My Year of Healing

Reflections on My Year of Healing

2007-05-15T21:10:00.000-05:00

Today, May 15, is Clay's 7th birthday. It is, in a sense, a birthday for me, as well. One year ago today is when I first heard the words that would change my life forever.... "You have breast cancer." Actually, Dr. D didn't use those exact words. I can see her now, standing by the ultrasound screen, pointing at a large spot on the image of my right breast saying something to the effect of, "This is definitely cancer that we are dealing with." She was so certain in her delivery of this news that I never doubted for a second while we awaited the biopsy results that she was correct in her diagnosis. And she was.

Wow. It's hard to believe it has been a year when I can remember the details of that day as if it were yesterday. So much has happened. So much has changed. I have changed. Sure, I have two fewer breasts than I did at this time last year and about 1/100th of the hair. (I also have hot flashes I never had before, as I was just reminded. Woo! I also have chemo brain big time!) The biggest changes, however, are not the ones you can see with your eyes (or that cause the flushing or forgetfulness.) The real transformation occurred not within my body but within my spirit. That day symbolizes a rebirth for me, an awakening to life. That day marked the beginning of my year of healing.

Last year when I created the name of the blog, I think I was referring solely to the physical aspects of healing I was about to undergo, as I knew the treatments would be nearly a year in duration. What I didn't know and couldn't really even begin to comprehend was all of the other forms of healing that would occur. I also now understand that my year of healing was just the beginning of a lifelong journey of healing, an opportunity for continued growth and awareness. I deliberately picked pink as the background color for the blog. "How appropriate," I thought, never knowing how sick of pink I would become!

My beloved yoga instructor, Joy, interviewed me for a newsletter several months after my diagnosis, and I remember her asking something along the lines of, "One year from now when this is all behind you, what do you want your life to be like?" I remember my response being something like, "I don't want to forget the lessons learned from this experience and the overwhelming sense of gratitude for just being alive."

Early on, my brother, John, asked a similar question . "When this is all over, do you think that you will just consider it to be a part of your past that you dealt with and that you will resume your normal life, or do you think that you will be forever changed by it and live your life differently moving forward?" At the time, I answered that while some people probably couldn't wait to get their old lives back, I didn't want life to ever go back to "normal." I was already beginning to experience the gifts that come from staring death in the face and telling it to go take a hike.

I have asked myself the question, "If someone could wave a magic wand and make it so I never had cancer, but at the same time, the lessons learned from the experience would also disappear, would I want the wand waved?" That's a tough question, but in all honesty, I think I would have to say "no, thank you" to that offer. I could, however, put the wand to good use for some other purposes... and I wouldn't ask for much... a villa in Tuscany, a live in massage therapist (actually one in Tuscany and one in Toano), and hair. Otherwise, life is good, and I am so satisfied!

At the time I began the blog, I couldn't even begin to imagine where I would be one year later, but I do remember having total faith that I would not only survive, but that I would be entirely healed of the disease. And I have been. Just by virtue of its name, I don't think I intended to maintain the blog beyond one year. I have been giving serious thought to discontinuing my ramblings as my first year of healing draws to an end this evening. Afterall, I am now only updating it every couple of weeks. Nonetheless, I believe there is still value for me certainly, and perhaps for others, in continuing it. As I embark upon my new mission to save lives by educating women about breast cancer, I may be able to use the blog as a tool in that endeavor. Besides, the fact of the matter is, I still have a lot left to say! I have to tell you about all of the lessons I learned. I would say more tonight, but it is late, and one of the lessons I learned is to take care of your body and it will take care of you!

A Morning Song

2007-05-01T09:27:00.000-05:00

It’s early in Scottsdale, but the birds have been singing their chorus of morning greetings since before the sky began to lighten. My internal clock is still on East Coast time, so I have been using the stillness of these moments as the day gently awakens to reflect.

I am here for the annual conference for my business, the Entrepreneur’s Source. Last year at this time, I was at my first conference with the Entrepreneur’s Source, and I was completely unaware of the journey upon which I was soon about to embark. I almost just wrote “blissfully unaware”, but there was nothing blissful about the way I was living my life. Not only was I unaware of the cancer that was growing in my body, in many ways I was just plain unaware. I was living, and it was an active, busy, full life, but it was also a life of unawareness.

I found the lump right before I left for conference last year. It felt different from anything I had felt before. I had my share of lumpy breast tissue, but this lump, it was noticeable within the rest of the lumpiness of my right breast. Nonetheless, I was getting ready to go out of town, and I was busy, and I dismissed it. After all, I had just had a mammogram a month earlier, and that was fine. Sure, I have a strong family history of breast cancer in my family, but that didn’t mean I was going to get it. Besides, I didn’t have time for this. And so, I left for the conference and didn’t give it another thought... then.

But I did give it another thought later. Last year’s conference was in Palm Springs. My friend, Charity and I would begin every morning with a hike on a nearby mountain. It was beautiful, and I relished these walks and our talks. The days were filled with conference activities, and the evenings were filled with dinners with colleagues and hanging out at the bar or poolside. I was distracted from the lump, but now that I was aware of its presence, this knowledge would intrude into my thoughts at random moments. I remember telling Charity about it, and in her sweet, optimistic way, she assured me that it was probably nothing more than a swollen lymph node as this had happened to her in the past. Uh huh. Yea, I am sure that’s all it is… But in the deepest recesses of my consciousness, I knew. It’s just that the more accessible part of my consciousness wasn’t ready to absorb the truth yet.

It still wasn’t ready when I returned home from the conference, but ready or not, I wasn’t going to be allowed to dismiss it for much longer. The week I got back from the conference, Bo felt it. “What’s that?” he asked. (Deep sigh.) I scheduled an appointment that same week with my ob/gyn. I guess you could say that the rest is history.

So here I am, almost a year later. Yes, here I am. I AM HERE! I am.

Those birds are singing a song of celebration this morning, every morning, and I am listening now. Each day is a celebration. I know there are really crappy days, and I would be lying if I told you that every single moment of my life is now blissful. What I can tell you is that every day presents us with so many things worth celebrating… a call from a friend, a decadent piece of chocolate cake, a gentle breeze on your face, the scent of a flower, apples, a smile from a stranger, the sound of laughter, a ladybug, a pretty picture, a sweet caress from your partner, a song, tears, a beautiful sunset, tickling, a white puffy cloud in a blue sky, thunder, a cup of coffee (or organic green tea for me), a good book, a long soak in a tub, hair (!), a butterfly kiss....

Many of the things worth celebrating are forever there and are always available to us despite the good or the bad that is happening in our lives. Some days we can't just can't see them due to the clutter that can consume our day to day existence, but it's not because those wonderful, celebratory things aren't there... It’s all about being aware.

Doctors, Doctors, and More Doctors

2007-04-11T22:48:00.000-05:00

Thanks to all of you who reached out to me after my last posting to let me know that you are still out there and that you care! I am happy to report that I haven’t been angry for the last two weeks, just busy again. Expressing my emotion through the blog was very cathartic. I imagine that I will continue to experience periodic episodes of anger, but I believe they will diminish in intensity and frequency with the passage of time. I’ll just have to ask Dr. H to warn me when he is going to be on the evening news again.

Speaking of cathartic… I had a colonoscopy this past Monday. (The reason for the colonoscopy is that I am now at greater risk of colon cancer due to my history of breast cancer.) I didn’t realize until a couple of weeks ago that I had scheduled it for the day after Easter, and by the time I did realize it, I was just so anxious to get it behind me (pardon the pun!), that I didn’t bother to reschedule it. For those of you who have had the opportunity to experience a colonoscopy, you will understand why this Easter wasn’t my most enjoyable. I had to stop eating after breakfast that day (no raiding the kid’s baskets for candy), and I had to begin my prep that evening.

My procedure was scheduled for 11:00 the next morning at the hospital. I received one drug to relax me and another for its amnesic affect. As the nurse was administering the drugs through my i.v., I asked her how I would know the drugs were working, and she said that I would fall asleep. The next thing I remember, I was awake, and the procedure was over. Considering that this procedure is the most invasive I have received in the past year, I would have to say that fasting and prep aside, the colonoscopy was actually one of the easiest tests I’ve had since this whole health crisis began. The results were available immediately upon wakening, and… I have a very healthy colon, with souvenir pictures to prove it. Because of my increased risk, I will be put on a five year schedule, instead of the customary ten. It was so nice to actually have 100% definitive and conclusive happy test results. It has been awhile…

That brings me to another test I had in the last month. It definitely qualifies as the least invasive and easiest medical test I have ever had, and that’s not even because I was asleep during it. I was conscious, drug free, and able to remain fully dressed. I didn’t have to consume radioactive potions, forfeit any type of bodily fluids or get poked, prodded, or probed. I merely had to lie down on a platform while an imaging device assessed the density of my bones. The test was done to establish a baseline for the condition of my bones prior to my beginning tamoxifen treatment. While very effective in reducing the risk of recurrence of estrogen-receptor positive breast cancer, tamoxifen is notorious for adversely affecting the bones.

The test showed that I have osteopenia, a precursor to osteoporosis. I actually have slight bone loss in my right hip. Dr. P. ordered additional testing, so it was back to her office for more bloodletting. This time, it was to evaluate the level of Vitamin D in my body. The normal range is 40 to 100. Mine was 18. Dr. P put me on a very high dose of Vitamin D, and this time it is truly a vitamin, not a euphemism. I am taking a 50,000 IU capsule once a week for six weeks. Then I will be tested again, and if all is well, I will continue with the 50,000 IU capsules once a month for the next year. I will then receive another bone density test that will hopefully show no further bone loss. If there is additional bone loss, I will need to start taking a real drug, like fosamax.

It is interesting to note that over the course of my research during the past year, I learned that Vitamin D deficiency is associated with breast and other types of cancer. I don’t know if the studies are mainstream and accepted by traditional medical practitioners; however, I believe it to be true and will ensure that I maintain healthy levels of Vitamin D moving forward.

As I mentioned at the end of my last blog, Dr. P also confirmed that the blood work she ordered to assess my thyroid and pituitary glands indicated that no intervention is necessary, merely patience. My glands are fine, and there really is no explanation, other than chemo detox, for the slow and sparse hair and eyebrow growth. It is coming, but it is very thin. Nonetheless, I was actually complimented on my short "hair cut" not too long ago. That’s progress!

I also had a few doctors’ appointments last month. I saw my surgeon, and that visit was pretty uneventful. Of most significance is the fact that I don’t have to go back for six months. Similarly, I had my six-week, post-radiation, follow up visit, and it was also run of the mill. Again, I don’t have to go back for six months. It is funny the events now considered worthy of celebration in our household, but graduation to six month medical appointments does qualify!

I am still going, albeit sporadically, to physical therapy and am receiving regular massage therapy (my favorite treatment!) for ongoing issues with my neck, shoulders, and back as the result of the double mastectomy. No one warned me, and I guess I just never thought that the removal of my breasts would affect anything else. I never realized that my breasts were so relevant to everything else in my upper body. I am hopeful that some day I will be back to “normal”, minus the breasts, of course, and that I will regain full flexibility and movement in my arms and shoulders. I still have numb areas, especially on the right side where the lymph nodes were removed. My surgeon said that those sensations may not change, but how my body responds to the sensations will change. A little slow when it comes to these matters, I now understand that I have experienced a pretty significant trauma, and I must be patient (uh, that word again!), as my body heals.

In preparation for a flight next month, I was fitted for a compression sleeve last week. This is a precautionary measure to prevent the risk of lymphedema due to pressure changes in the cabin. I also went to the dentist for the first time in a year. I wasn’t able to go while I was undergoing chemotherapy because of the risk of infection during what would normally be a routine cleaning. I received a clean bill of dental health. So that is the complete medical update. I think that all I have left now is the eye doctor… My insurance company should be pleased, but no one will be happier than I am to get to a point where a medical appointment is the exception and not the rule in my life!

Authentic Anger

2007-03-29T00:07:00.000-05:00

I don’t know if anyone out there is still reading this as I have been “off the air” for a couple of weeks. Everything is fine though – great, in fact. It is just that as “normal” life resumes, I find myself getting busier and busier even as I try to hang onto the lessons learned last year. And I am incorporating many of those lessons into my daily life, but it does take more than just awareness. Continuous conscious effort is critical.

If you are still out there, prepare yourself for this posting. You may want to step back from the computer. Tonight I was going to give a medical update, but I am too mad to do that. In order to sleep, I must relieve some of this anger, and the best way to do that at this late hour, I believe, is to write. Bo did listen to my tirade for awhile and then fell asleep! In his defense, he had a long day of physical labor. Also, it’s not like he can offer up any solutions, as men like to do. There are no solutions, just acceptance.

I have been really pissed off for a long time now - going on a year almost. Most of the time when the anger surfaces, I acknowledge it and then suppress it again, because truly, there is no changing the past. I have never written about it before now. I have alluded to it, but I have never shared the anger on this blog before. So why am I angry, and at whom is my anger directed, and what set me off tonight after having a very pleasant day? Good questions!

My surgeon was on the news this evening. It’s not even October, and breast cancer is getting a lot of media attention lately. Sheryl Crowe was testifying before Congress about the need for more breast cancer research, but the publicity is probably more attributable to Elizabeth Edward’s news of last week. Several people told me that they thought of me when they heard that her breast cancer had returned. Yeah, I thought of me too. My “support group”, now known affectionately as Beyond Boobs, met on Sunday, and we talked about how it made us feel when we heard the news, and our feelings were pretty universal - empathy and dread. I was actually in the car on the way to the massage therapist when I heard the issue analyzed on NPR for its political ramifications. I felt like I had been kicked in the stomach. While my heart first went out to Elizabeth, I then felt a stab of fear for myself. What if mine comes back?

While I am able to go for longer and longer stretches without thinking about my breast cancer, obviously hearing about recurrences in other women who had breast cancer drives the reality home and suggests that the unthinkable is indeed possible. (What’s the big deal about it coming back? Well, as Dr. P explained to me and from a strictly medical standpoint, breast cancer is only considered curable the first time. If it recurs, it becomes merely treatable. In other words, I used my one get out of jail free card.) So then I have to talk myself off the ledge, remind myself that I am a unique individual, that the statistics are in my favor, that I have done everything I can and continue to do everything I can to minimize the risk of recurrence. I, just as anyone else, have the gift of the present, and I have so much goodness in my life to celebrate. And so it goes, and I am back on solid ground until the next time.

But tonight, it’s not about fear, it’s about anger, so I will get back to my story. So I was getting ready for bed after a really nice day, and my surgeon was on t.v. explaining the importance of MRIs for women newly diagnosed with breast cancer. The images obtained with MRI are far superior to those obtained in traditional mammograms and help the surgeons determine the best way to proceed with surgery. Then, the news segment went on to identify women who should have routine breast MRIs, and it included women with a family history of breast cancer. Family history is considered two or more close relatives who had breast cancer or one close relative who had breast cancer before the age of 50. HELLO!!! Who does that sound like???? Let’s try two close relatives diagnosed way before 50!! Wouldn’t it have been really nice if someone had told me that useful little piece of information before I was ever diagnosed with probably Stage III breast cancer, and therefore, before I ever experienced the need to undergo five months of poisoning my entire body with chemotherapy and causing God knows what kind of permanent damage, chopping off both boobs and messing up all kinds of nerves and muscles in the process, and subjecting myself to intense doses of radiation!! Dammit! Dammit, dammit, dammit!

This didn’t have to happen. Not the way it did, anyway. Maybe I still would have gotten breast cancer, but it certainly could have been caught before there was ever lymph node involvement and the need for such drastic measures... Before it spread and increased my risk of recurrence... I was so high risk. I know that now.

My family doctors and ob/gyns had an obligation to help me. It’s not like I didn’t ask every year when I went in for my routine physical with my ob/gyn. I would remind him of my family history. I would ask him what I should be doing to be proactive about early detection. I even asked about genetic testing. “Just get your annual mammogram,” was the consistent message I received every year. Well, that is the same guidance that would be given to any woman over the age of 40. Yet I wasn’t any woman over the age of 40. My risk of getting breast cancer was greater than my risk of not getting breast cancer. Doctors are supposed to know that! It’s their job! But you know what, it’s not their lives. So, yes, I am mad. I am mad at the doctors, but I am also mad at myself for not taking matters into my own hands and educating myself about my risk and my options. After all, it is my life.

So what should the doctors have done for me? At a minimum, I should have been having mammograms and ultrasounds at least every six months, especially since calcifications (considered to be pre-cancerous) were found in my breasts over six years ago. And not just any mammograms either. I should have been getting digital mammograms because of my dense breast tissue (which also put me at greater risk, by the way, but no one ever bothered to share that little tidbit either.) I also should have been referred for genetic counseling and testing. Now, of course, the MRI has been added to the arsenal of early detection devices, and since that is a fairly recent development, I don’t hold the doctors as accountable for their failure to offer that procedure to me. I just hate that all these tools were out there, and no one ever instructed me to use them.

So what to do with all this anger? Well, there is the creative outlet. It helped to use the posting this evening as a form of release. Thank you. Then there is the forgiveness outlet - I have actually considered writing a letter to my former ob/gyn, the doctor I feel let me down the most… In this letter I would explain my anger at his negligence, or ignorance, as the case may be. I would ask him to learn from me and not make the same mistake with other women. And I would forgive him. Then I guess I would also have to forgive myself. Hmmm… That one may take more then a letter! Of course, there is always the physical outlet. The kick box aerobics sure is useful. Those targets can absorb a lot of anger. I also have the altruistic outlet available to me. While my past can’t be changed, I can be responsible for changing the future of other women. I can help educate women to take control of their health and to avail themselves of the medical technology that is available. I have started doing that, and it does help.

I don’t know though. Just as I have my momentary lapses of fear, and momentary lapses of sadness, perhaps I will continue to have these momentary lapses of anger. Maybe it’s “normal” – especially if I don’t let it wreak havoc in my life. Most days, I honestly do see cancer as a gift, but there are certainly moments when, if I had a gift receipt, I would be standing in line at the Customer Service Department of the Life Store ready to return this gift!

I have to laugh. I started this blog by saying that everything is great, and then I go off on this tirade. That’s okay. I am being genuine and authentic. Life is great, but that doesn’t mean I can’t allow myself a little anger every now and then. My acceptance of myself for all I am is probably the first step towards forgiving myself…

I will save the medical update for another night, but rest assured that all is well, and Dr. P has me on the one night stand treatment option.

One Night Stands and Other Late Night Thoughts

2007-03-12T21:19:00.000-05:00

I called Dr. P's office last Tuesday to find out the results of the blood work taken the Thursday prior. Dr. P was out of the office for the week, but someone called me back to communicate the results to me. I didn't know what tests Dr. P had ordered, but they apparently had something to do with my hormone levels, and other than showing that I appear to be menopausal, the test results were within normal ranges. So I guess that is good news? I will have to wait for Dr. P's return this week to find out exactly what it means and if the recommended treatment is patience or thyroid medication, I mean vitamin. While patience is probably the greater challenge for me, in this case, I prefer it to the alternative. Patience requires a short term commitment. Popping a daily pill (or whatever it is!) requires something along the lines of a lifetime commitment, and since I intend to live a long, long, very long, life, thats a lot of commitment. Hmmm... I guess you could compare it to a one night stand versus a marriage... and in this situation only, I would have to vote for the one night stand!

You know, it's all about the hair. It has always been about the hair, but not for the reasons you may think. It has absolutely nothing to do with vanity. I don't care if people think I am attractive or not. I used to care, but I had to get over that last year or I wouldn't have ever left my house. I have actually gotten used to the mod look, and I have been making public appearances sans chapeau now that the weather is warming up. Besides, everyone who cares about me loves me regardless of the amount of hair sprouting from my crown. Rather, it has everything to do with camouflage. I don't want to be instantly recognizable as someone who had cancer. It's like the Scarlet Letter, but instead of an A branding me as an adulterer, I have a sparsely covered head branding me with a big C. I just want to blend in. That's not to say that I have banished the experience to my past. To the contrary, cancer has helped sculpt me into the person I am today, and I celebrate me! Also, I do want to use my journey to help others, and to accomplish that, I will quite willingly identify myself as a cancer survivor. I just want to blend in!
As I have mentioned in past postings, I want to find opportunities to educate women about breast health and to speak to others about using the challenges life presents as gifts for growth. I am not sure where that road will lead, but I am setting out in that direction. A local newspaper contacted me a couple months ago. Word of my blog had reached the community editor for the Daily Press, and she had a free lance reporter contact me about writing an article. The article appeared several weeks ago. I have included the article at the bottom of this posting.

It's actually strange to be described as a cancer survivor, and to see those words in print, no less! I guess I just haven't yet integrated that terminology into my sense of self even though I have certainly assimilated the experience into my identity. When I spoke with my Dad about the gap between my experience with cancer and my identification as a cancer survivor, he described the experience of having cancer as soul searing. How true, and that could explain why my conscious self is still trying to get catch up to my soul!

How apt, that expression. Soul searing... I wondered how he could know, having not personally experienced cancer himself. How completely self-absorbed of me! Of course he experienced the soul searing nature of cancer, as does anyone and everyone who deeply loves a person with cancer. In his case, it was both wife and daughter. Obviously I was painfully aware that my illness affected all those who care about me, but I guess I didn't really comprehend to what degree. I just recently read an article stating that the most stressful life event is a serious illness. It's not a personal serious illness, as you might guess; rather, it is the serious illness of a loved one. A personal serious illness actually ranked third. (Don't ask me what the second thing was - chemo brain effectively erased that one from my memory. In keeping with my one night stand and adultery theme this evening, it was probably divorce!) Another lesson learned... one that I plan to incorporate into my mission going forward.

So here's the article. Just so you know, Bo took exception to this article. I will tell you what I told Bo. I wasn't holding back about my dear, sweet husband to the reporter. I talked to Muna for nearly an hour, and Bo's name came up quite a bit, in fact. I even told her that Bo doesn't read the blog -he says he is waiting for the book to come out. I guess stories of bloggers with husbands don't sell papers!

Cancer survivor shares her journey

A Williamsburg woman's online diary of her experience fighting breast cancer is now helping others like her.

BY MUNA KILLINGBACK
February 22, 2007

Talk with any group of women these days, and everyone knows someone who has had breast cancer. Chances are high that someone in the group has had it herself.One survivor, Mary Beth Gibson of Williamsburg, wrote a blog recording her day-to-day feelings and experiences through a whirlwind of medical tests, treatments, surgery, and recovery. Her online journal, titled "A Year of Healing" is now helping other cancer patients and their families cope with this experience.

Diagnosed with breast cancer in May 2006, Mary Beth spent the next nine months vacillating between despair and hope. The flip side of her illness, she says, has been a new awareness of what is important."It has been a life-altering experience for the positive - a wake-up call - like someone kicked me in the behind and said, 'You need to enjoy your life a little more and slow down.' It is unfortunate that it took cancer to do it, but it's been a gift."

Mary Beth had a family history of breast cancer and knew she was at high risk. Still, she didn't panic when she first found a lump in her breast during a self-exam, but continued on to a planned work conference.She had had a problem-free mammogram only the month before. However, on her return, a visit to the doctor led to another mammogram and cancer diagnosis on the same day.She'll never forget that day in May 2006: "I cried a lot, thinking, 'I don't want to die, I'm too young and I want to see my kids grow up.' The hardest call was to my father."

When friends and family heard the news, the Gibsons' home, business, and cell phones started ringing off the hook."I am very fortunate to have a lot of relatives and friends, but it became very time-consuming telling each person about the latest test results," she said. "I considered sending group e-mails, and a friend suggested that I start a blog."I'd never blogged or even seen a blog before."

Her entries track her feelings, observations, medical procedures and encounters with an array of specialists. Her story puts a human - and often humorous - face on the medical processes.Mary Beth believes the blog will help women diagnosed with breast cancer and their families and friends as well."It is helpful for the relatives to read about the experience through the eyes of someone who had it themselves - especially if the family member isn't discussing a lot," she said.

It's been helpful for her, too."I discovered I had a sense of humor," she said. "What I write is what I feel. If I'm feeling crappy, I write that, but most of the time, I'm feeling happy."Some people cope by not talking about it, but I feel better when I'm talking about it with people. It helps me process."Actually, the whole cancer experience changed my perspective because everything is so minor compared to potentially losing your life," she explains.

No longer does she say she'll do something "someday." For example, she is signed up to ride in the 2007 Pan Mass Challenge along with 12 relatives and friends in August. This bicycle tour raises funds for the Dana-Farber Cancer Institute supporting cancer research.

Her father, Bob Morill, who lost his wife to breast cancer, found his daughter's writing expressive and compassionate."Often it is more difficult to talk through these things - it is less emotional to read it than to hear it," he said. "You can also go back and read it again. In an age when people are distant, her blog helped us to stay in touch."

Jenn Crippen, a friend of Mary Beth's, found that the blog kept her informed about what she was going through medically and helped her to be a better cheerleader."I wasn't wondering how she was doing or what I should do because I knew. I could focus on being a friend."

An alumna of William and Mary with a degree in psychology, Mary Beth has lived in Massachusetts, Florida, and Georgia but kept coming back to the Williamsburg area. A mother of three and a small-business coach with The Entrepreneur's Source, she has also committed herself to helping others with breast cancer."One of the things I've wanted to do since I was diagnosed is to find a way to reach out so that what happened to me doesn't happen to other women," she said.

For women at risk for breast cancer, Mary Beth has some advice: Don't rely on mammograms alone, which could lead to a false sense of security. Be your own advocate. Learn about treatments and options. Keep up on the latest research. Ask questions, and don't just rely on what your doctor tells you.

Mary Beth's blog can help anyone undergoing any life challenge, as Jenn Crippen observes: "I really appreciated Mary Beth's blog because her humor and openness actually cheered me up!"The words in her blog have been inspirational to me in my life. I have shared it with others, and I believe that anyone who is dealing with breast cancer or any illness in their life, whether directly or indirectly, could be uplifted by her example of strength and endurance and faith."

A New Tension Tamer

2007-03-01T22:41:00.000-05:00

I reported to the oncology office this morning to have more blood drawn, and then I headed over to Erica's for physical therapy. I wasn't my usual positive, upbeat, rose-colored glasses, Pollyanna, cheerful self. I know the thyroid thing isn't a big deal, and I know it could be worse, but when it comes to my health, someday soon I would like to be able to replace, "It could be worse..." with "It couldn't be better!" While physical therapy is her stated occupation, Erica's just as proficient at the mental therapy. She listened patiently while I filled her in on the latest medical news. I also gave her a completely unbiased update from the home front where the entire Gibson family is adjusting to Bo's return to work. She sent me on my way with some good advice and a great big hug.

I finally listened to the message that Dr. P left yesterday afternoon, and it made me feel much better. Dr. P mentioned that one of the thyroid tests was a "smidge low, just a teeny bit low." The endocrinologist she called thinks it is just a smidge low because the pituitary gland that affects all the other glands in my body may have slowed down as a result of all of the treatment I received. They wanted to do a few more tests to see if they could "boost me along." I am hoping "boost me along" means something more temporary in nature than "quick fix" ended up meaning. She did say that everything else looked really, really good. It couldn't be better!

I also received two e-mails from two women who had read my blog and both reported having been diagnosed with low thyroid. One of them is in my "support group" and is a recent young cancer survivor who was diagnosed post-treatment. That makes me wonder how common this ailment may be following radiation and chemo... The other is a friend from high school who was diagnosed ten years ago after the birth of her second child. She writes:

"Low thyroid is no big deal. And the medication, truly, is not even a medicine. It is the same substance that your body should be making, but isn't because of the low thyroid. I coincidentally just had a conversation with a doctor about this 2 weeks ago. He REPEATEDLY pointed out that he doesn't even consider thyroid medication to be a true medication because it is literally the same substance produced by your body. You'll probably get a script for synthroid or levoxyl. One pill, every morning, on an empty stomach with a glass of water. The doctor did tell me that it is very important to take on an empty stomach with only water, because the dosages for thyroid medicine are crazy low- they're written in micro grams. So it's important to make sure your body is getting its best chance at absorbing all of the medication since it really is such a tiny amount.

Seriously, I don't even consider myself to have any kind of "illness" and I've been taking levoxyl for over 10 years. It is really no big deal. Don't worry yourself one bit about it! As your doctor said, it's just one of those things. It happens, not because of anything you've done or not done, but just because sometimes things don't work as good as they could. Consider yourself lucky, if this is the problem, that it is something so benign and easily fixed!!

I appreciated their outreach. By the end of the day, Pollyanna was back, and the world was again rose (not pink!)

Thursday is usually yoga day, but Joy had to take a couple of weeks off, so we didn't have class tonight. I have been going with two friends, Krissy and Kim. We all agreed that we couldn't possibly go another week without some way of releasing tension, so we found an alternative to yoga for this evening... kickbox aerobics! Talk about tension release! It felt so good to kick and punch the targets. (Next time I am leaving my boobs at home. They were getting all lopsided as I was punching and kicking.) It would appear that I am carrying around some anger and aggression of which I wasn't previously aware. I love my yoga, and I will continue my weekly practice, but I am also going to regularly attend the kickbox aerobics. The combination of the two will either give me a sense of balance or a split personality!

Do I Need Patience or a Thyroid "Vitamin"?

2007-02-28T21:32:00.000-05:00

I went to see Dr. P., my oncologist, for a follow up visit yesterday. She began by asking me how I felt. For the most part, I feel very good, with two exceptions. I do have a lot of joint pain. Everyone in my "support group" has acknowledged experiencing joint pain. Initially, it was most noticeable in my knees, but now it has moved to my shoulders, and is worst at night. Dr. P. indicated that she is seeing a lot of this ... arthritis-like symptoms following chemo, especially in young women. She said it should resolve itself in months, or a small number of years...

Next I mentioned that I am still going to physical therapy twice a week to improve my range of motion. I feel very bound up and my movements are still pretty restricted, especially on the right side. (Erica, my physical therapist observed last week that while we have made significant gains in resolving the scar tissue and "congestion", the muscle was pulled really tight during surgery, and she is not sure if I will ever regain 100% of my pre-surgical movement.) Dr. P. noticed that there is still a lot of edema on the right side which will take awhile longer to dissipate. She agreed that the muscle is tight and said that after the fluid is gone, we can do a chest MRI and see what we are dealing with.

I mentioned that my hot flashes seemed to be on the decline and asked if that could be a sign that my periods may be returning. She said that was a possibility. I said, “Do we want my periods to return?” She responded, “For estrogen receptor positive breast cancer, we don’t. For heart health and bone health, we do.” Lovely. The future is bright - breast cancer with awesome bones and a reliable ticker, or cancer free with brittle bones and a feeble heart. Well, forgot that. To the extent that I can control it, I intend to be cancer free with strong bones and a healthy heart!

To prevent the recurrence of breast cancer, I will shortly start taking a drug called Tamoxifen. I will stay on this drug for two years. If my periods return, I will continue on the Tamoxifen. If my periods don’t return after the two years, I will be put on an aromatase inhibitor, which has been shown to be more efffective at preventing recurrences in post-menopausal women than Tamoxifen. Dr. P. said that most young women don’t experience many side effects from the Tamoxifen. (Dr. H. told me at my last appointment that the most common side effect is severe hot flashes. A dangerous, but highly unlikely side effect is blood clots.) I prefer Dr. P’s briefing of the medication as she obviously subscribes to my theory that ignorance of possible side effects reduces the likelihood of expperiencing the side effects. Prior to the Tamoxifen, I will have a bone density scan to provide a baseline measurement of my bone health.

I showed her my hair and remarked on the lack of progress. Instead of telling me to be patient, she agreed that the growth was not what would be expected nearly five months after the completion of chemo. Oh great. “Well, what would cause that?” I asked tentatively. “Low thyroid,” was the immediate and matter-of-fact response, an answer I wasn’t prepared to hear and certainly didn’t want to hear. She said that the lack of growth on the outside of my eyebrows was another possible sign of low thyroid. Yeah, I was wondering why my eyebrows hadn’t filled back in to their pre-chemo fullness....

I automatically slipped into interrogation mode. I asked her what would cause low thyroid and if there was any connection to the chemo. She indicated that it was an auto-immune response and that the chemo would not have triggered it. “It’s good if that is what it is,” she said, “It’s a quick fix. You would just go on medication.” I eyed her suspiciously. She knows of my disdain for any form of "unnatural" medical intervention. (Yes, I know that chemo, radiation, surgery, and tamoxifen definitely fall into the unnatural category, but I was compelled to make some exceptions in light of the diagnosis and my unwillingness to put my life on the line with unverifiable natural treatments.) “It’s just giving your body what it needs, like a vitamin,” she assured me. Still skeptical, I asked if this quick fix was a short-term thing or a long-term. “Long term,” was the response, as in the rest of my life. My disappointment was obvious. “You’ll just need to take a vitamin every day,” she said trying to reassure me.

“Well, what if it isn’t my thyroid?” I asked. “Then it’s the chemo,” was her answer. I asked her for other symptoms, and she mentioned fatigue and dry skin. I have a little of both, but then so does almost every working mother with three young children whose husband just returned to work after being home for eight years and who now has to do everything he did plus run a business, during the winter months while living in house with very dry heat. That didn’t help us much. She ordered two additional tests to be run with the other blood work.

We discussed how I would be monitored moving forward. She said that after my next six week visit, I would graduate to three month appointments for a period of two years. Then I matriculate to six month appointments. At each appointment, I’ll have blood drawn to monitor blood counts, bone and liver enzymes, salts, and other “stuff” to determine the presence of cancer. Instead of mammograms, I will have chest wall MRIs to detect a local recurrence of the cancer.

I then went somewhere I wasn’t sure I wanted to go, but I did anyway. A few weeks ago I was explaining the staging of breast cancer to my aunt and cousin and referring to a chart that was given to me int the beginning. It suddenly hit me that the presence of tumors in three quadrants of my breast seemed to fit the criteria for Stage III. I felt sick about it and was quite concerned about it for my customary 24 hour worry period. I thought about calling Dr. P because I wasn't sure if I could wait until our next scheduled appointment to learn the answer even though knowing the answer wouldn't change anything. I finally talked myself off the ledge, but when I saw Dr. P today, I just couldn't help myself, and I went there.

I told her that knowing the answer wouldn’t make a difference in what we had done or how we would proceed, but that I still felt the need to know. It's just the way I am, and I shouldn't try to analyze it beyond that. The initial staging of my breast cancer put me at IIB due to the size of the tumor and the lymph node involvement. I asked if the post-surgical pathology showing that the cancer had spread into breast tissue beyond the primary tumor bumped me up to Stage III? She never really answered the question. She said that she would have to review the lab report. She did mention that what they do know for sure is that any node involvement of more than three has a significantly higher rate of recurrence. I had two. After chemo. So we will never know. How many were positive. Before chemo.

I know that staging is imprecise, and I know regardless of how we choose to label or categorize the breast cancer that was, ultimately, the outcome will be whatever it is going to be. I also know statistics are on my side, and when doubts creep in, as they occasionally do, statistics are how I choose to reassure myself. (Kind of ironic for a gal who found no comfort from statistics while enduring that class in college.) So I left without the specific question answered, but it doesn’t matter. I won’t ask again. She understood the real question I was asking, and she responded in the way I needed.

Dr. P. asked me if I was depressed. I told her that contrary to what she may have observed during this appointment, I am generally very happy. The thyroid announcement certainly didn’t do much for my mood. Also, if one is ever able to conveniently forget about having had cancer, a visit to the oncologist is a sure-fire, slap-in-the face, alarm-ringing reminder! It’s difficult to have real positive associations with that office, so psychologically and emotionally speaking, just walking into the office can be a downer! We also discussed the feelings that accompany the completion of treatment, the kind of disorientation I described in my last posting. All things considered though, I feel really good, and I am happy.

So, I left the office and felt like crying. Low thyroid? Come on! Do you know how frustrating that is? I have altered my lifestyle significantly. I gave up coffee, for God’s sake, not to mention, alcohol, meat, stress, soda, and dessert (most of the time.) I exercise at least four times a week. I do yoga and meditation. I make sure I get at least eight hours of sleep. I am boring! And for what? I thought I was on the road to great health! I wasn’t sure whether to go to a bar or to Starbucks to drown my sorrows. I just feel that I deserve to be healthy now!

So what did I do? The boring thing, of course. I hit the treadmill and pounded out my frustrations in a productive way. I also did what I have been doing for as long I can remember when I needed to talk (excluding the turbulent adolescent years when he went through a stage when he really didn’t know what he was talking about)…. I called Dad. We talked for most of my 45 minute workout on the treadmill. Dad helped me release my emotions, and the treadmill helped me release endorphins, so I felt much better afterwards. I didn’t race to the computer to google “low thyroid.” I decided not to worry about it until such time that I received a more definitive diagnosis. If and when that happens, I will go into research mode and develop a comprehensive list of questions for the next doctor in my future.

As usual, it took about 24 hours for me to absorb and adjust to the new information. I wasn’t completely surprised or alarmed when the phone rang this afternoon and the oncology office's info appeared on the caller id. Dr. P's assistant said that Dr. P had left a message earlier. (Dr. P must have called when I walked to the bus stop to get the Cole and Clay, so I hadn't heard it.) The assistant was calling to tell me when I needed to come in to the office in the morning to have more blood drawn since one of my tests was abnormal.

I felt like I had been kicked in the stomach. “Which test?” I asked. “One of the thyroid tests,” was the reply. "But the cancer tests were all fine," I asked. I felt a huge sense of relief when the response was, "Yes." Thank God it is only the thyroid! (It’s all about perspective, isn’t it?) One of the thyroid tests came back normal, and the other was abnormal. A call to an endocrinologist resulted in a recommendation that I return for more blood work. I have an appointment for 9:00 a.m.

I almost called this posting "Approaching the last straw," but I don't want to tempt fate, and truth be told, I am far from the last straw. I have far more goodness in my life than, for lack of a better word, crap, but I sure would appreciate fewer items appearing in the crap column. No, I don't want to have thyroid issues on top of everything else right now, but if I do, I will deal with it. For one, I really don't have much of a choice. I can only control how I choose to respond to the latest challenge. Second, if it is my thyroid, all I have to do is start popping those vitamins, and I'll finally get my hair back!

Freedom?

2007-02-20T00:31:00.000-05:00

It has been two weeks since my release. Release from what, you ask? Well, in my last posting, I likened the end of my radiation sessions to graduation from breast cancer treatment. Not! Although I did receive a humorous certificate of completion from the radiation staff (turns out the toaster was merely a carrot), there was little to distinguish this day from any other. There was no pomp and circumstance, zero, nada. I am not sure what I expected to feel or to happen as I departed the facility and put an end to this chapter. It seems as though fireworks should have been exploding, confetti flying, champagne bottles breaking (or flowing), and bands booming, but instead, it was strangely and unexpectedly anticlimactic. (I still haven't really done anything to celebrate or mark the occasion, but that is probably because I see each and every day as a celebration now.)

So, I discovered that the experience probably better correlates to being released from the state penitentiary - not that I would know what that feels like, but I imagine the feelings must be similar. You have probably seen movies where the prisoner dresses in civilian clothes for the first time in ages, stands before the opening gates of the penitentiary, and then pausing for a moment, walks through the gates into the great unknown. Yea, that’s what it feels like.

In so many ways over the last nine months, my life has not been my own. Rather, my life has been controlled by the medical community telling me where to go, when to be there, how I can expect to feel physically and emotionally, what treatments to follow, what drugs to take, what foods to avoid, etc. I was tethered to Williamsburg and couldn't wander too far away, especially during the radiation treatment requiring my presence five days a week. For the last nine months, while the rest of the world revolved around me, I had one primary focus – my health. Now, I have walked through the gates, and I find myself asking these questions: Where do I go? What do I do? Where do I start?

My life will never be the same again, and that’s fine. I don’t want it to be. That’s not to say I didn’t love my life before cancer (BC). It’s just that my BC life was full of so much beauty and abundance and goodness, and I failed to see much of it. I stressed myself out over things that seemed so important at the time but were so insignificant that I can’t even dredge up the faintest memories of the anxiety producing stuff now. Stress free life zone, that's my mantra now. And really, compared to facing a life threatening illness, most other stuff is pretty insignificant; although, unfortunately, it often takes the life threatening illness to make one realize this fundamental truth.

While getting out of bed each morning is still a challenge for me (once a night owl, always a night owl?), I try to greet each day with gratitude and recommit myself each day to spreading joy and love through my actions and interactions. I try not to take things for granted; although it is difficult to have awareness of all your gifts until they are absent. (For example, how many of you are consciously appreciative of your eyelashes from day to day? Be honest! Now how about if you didn't have them anymore? You would appreciate them, right?) I try to see beauty in everything and everyone and to experience and enjoy each moment without always thinking about the next task to be checked off the "to do" list or the next activity on the calendar. I try to live in awe of life, not in fear of death.

So, yes, I would say that my life after breast cancer is better than life before breast cancer, but that being said, what now? My physical health must obviously always remain a priority for me (as it should for everyone), but now, like the newly released ex-prisoner, I find myself struggling to establish a new identity in a world that just lost its structure and focus. What will life be like as a breast cancer survivor instead of a breast cancer patient? How will I relegate the breast cancer experience to my past while embodying the lessons I learned in the present? Will I be able to release, or at least manage the fear of recurrence in my future? (And am I getting way too dramatic?!) I guess time will tell, but I am not stressing over it. I just intend to enjoy the next leg of the journey as the road unwinds ahead of me.

While eating out with my friend, Kim, last week, I came across the following saying painted on the wall of the restaurant: “Yesterday is only a dream and tomorrow a vision. Yet each day well lived makes every yesterday a dream of happiness and tomorrow a vision of hope. Look therefore to this one day for it alone is life.”

Those words describe better than anything I could ever write, the gift that breast cancer has given me. That quote is how I plan to approach the journey that when examined in retrospect is the compilation of our life - one beautiful day at at time.

Butterfly Kisses

2007-02-06T14:10:00.000-05:00

What happened to the month of January? It flew by. It took me so long to tell my tale of radiation that I didn’t touch on some of the other events of the last month. Not to mention, I usually write my updates in the evening, and I found myself pretty well drained by the end of each day. Instead of getting my second wind and tackling all of the tasks I usually reserve until the kids have gone to bed, I found myself just hanging out. That weariness was probably attributable to my daily sessions on the “tanning bed”. I am still getting zapped daily, but I seemed to have regained my “normal” pre-radiation energy levels. This is a relief as I was really becoming quite unorganized and wasn’t able to stay on top of simple, but important things like getting the bills out on time and writing thank you notes. Anyway, I am starting to get caught up again, and I will use this posting to give a quick summary of some of the highlights of the past month.

I saw Dr. P, my oncologist, in January. I told her about the rather negative experience I had during my initial visit to the radiation center, and how I felt both scared and diminished following that particular appointment. What was the sense of urgency about the radiation? Had I missed some important detail along the way? Should I be worried? I thought the radiation was merely insurance to reduce the risk of recurrence. Dr. P assured me that the radiation was just “icing on the cake” and postulated that the radiation doctor was probably just anxious to keep me on schedule. Phew! Dr. P truly understands how much of her role of healer is as mental as it is physical…

She said I looked “fabulous.” Nine months ago when this saga began and all of my body parts were still intact, I would have responded with, “Thanks. You are very kind.” and I would have thought, “But you are out of your mind!” BC (before cancer) I reserved the term fabulous for women far more attractive than me and with much better figures than mine. Now I have long, purple scars where my breasts once were, and I am still quite challenged in the hair department, but you know what? I do look fabulous! When I look in the mirror, I am so grateful for my body. Cellulite? So what! Stretch marks? Badges of honor! Long purple scars? Symbols of victory! Scraggly hair? Signs of health, vitality, and healing. I love my body! As I return to health, I truly am grateful for my body and will never take it for granted again.

I also had a visit with Dr. H last month. It was actually the first time I had seen him since the surgery as he had to have surgery himself shortly after my operation. He said he had just returned from a meeting where results of recent studies from M.D. Anderson (Cancer Research Center) were presented. What I understood him to say is that aggressive tumors responded better to chemo; however, the long term prognosis (15 and 20 years out) was better when there wasn’t a complete response. I had a partial response to the chemo, probably because my tumor was a less aggressive type (well-differentiated and estrogen receptor positive), and that bodes well for my long term prognosis. (I remember being a little concerned that I hadn’t had a complete response to the chemo, but now I am glad I didn’t!) He cited a recurrence rate of 15%, and Dr. P had told me about 10%. Either way, I can live with that - literally!

My brother, Jeff, came for another visit, and I am happy to report that my “chemo brain” is apparently on the mend. At least, I won a few of the many Scrabble games we played that weekend. Although a recent study reported that the effects of chemo can remain in your brain up to ten years... I guess I have a legitimate excuse for forgetfulness and other mental deficiencies for the next decade, and after that I can blame any cognitive weakness on hitting my 50s!

I haven’t talked about my hair for awhile so indulge me for a few paragraphs. I am still wearing hats, and not just because it is cold outside (20 degrees Fahrenheit today, in fact). I was just a tiny bit discouraged at my last “Tea and Talk” gathering. One of the women stopped chemo about a month after me, and instead of wearing her customary scarf, she was proudly displaying a head full of short, beautiful, new hair. I have a hypothesis: she had four chemo treatments, compared to my eight, so her body may be detoxing more quickly than mine. (I am evolving, but patience is still not one of my virtues, especially when it comes to my hair!) Of course, I was so happy for her, and she looked absolutely radiant!

My hair is returning slowly, and as I have reported in previous postings, in the same male pattern baldness manner in which it departed. The sides and back of my head are actually pretty well covered, but the top and front is still sparse. There is more head visible than hair. My widow’s peak has been the last to see any new growth, but it, too, is finally sprouting finely textured, kind of wavy, mostly pepper colored hair, with some well-deserved salt thrown in for contrast. My hair used to be so thick and coarse that I always selected shampoo that would at least claim to make an effort at taming it. Last week when I was scanning the shampoo aisle for just the right product to coax my hair back to its former glory, I found myself again paying careful attention to the labels. This time it was the one promising 70% more volume that found its way into my grocery cart!

Chemo has a real twisted sense of humor, so naturally the hair on my legs has reclaimed its territory, so I am back to shaving on a regular basis. My eyebrows are starting to fill in, and the very fine, very light "fuzz" on my face is also back from its hiatus. I remember looking in the mirror and thinking how different I looked while I was undergoing the chemo treatments, but I couldn’t quite put my finger on it. Certainly my color was a little off. Of course, my eyebrows were barely there, and my eyelashes were just plain AWOL, but. that fine down departed with so little fanfare that I never noticed it was gone and how its absence contributed to the “chemo look” until it returned.

My eyelashes are short but full! I have tried mascara a couple of times, but it gives them a kind of spiky, blunt look instead of enhancing them. No biggie there, but the following moment was a biggie. Clay, my six year old, and I were cuddling one evening, and he leaned over to give me butterfly kisses on my cheek. He loves giving and receiving butterfly kisses. Over the past several months, he had frequently asked why I couldn’t give him butterfly kisses back, to which I would matter-of-factly respond, “Because you need eyelashes, and I don’t have any, silly!” Well, I can now give butterfly kisses to my precious son again, and what a celebration that is! And, look, no smudgy mascara on occasions like that when the eyes well up with happy tears .

Many of you have been asking about Bo. After having an MRI, x-ray, ultrasound, CAT scan, and all types of blood tests, Bo still does not have a definitive answer as to why his right leg is filling with fluid every night. Dr. #4 thinks that he may have had a blood clot that has since dissolved but is continuing to affect him. That doesn’t explain many of the other symptoms, but at this point, Bo has given up on getting any more of a diagnosis than that. The good news is that between the four doctors and the forty gazillion dollars worth of tests, all the “bad” stuff that Bo could have had has been ruled out.

Bo went back to work yesterday for the first time in over seven years. He has been a stay-at- home Dad since shortly after the birth of our first son, Cole. It was so great that he could be around for me and for the boys last year during the drama that we found ourselves living. My diagnosis occurred only two months after I had just launched a new business, and obviously my priority shifted from growing a business to one of pure survival. I put the business on the back burner where it belonged and focused on my physical health. As a result, our financial health kind of went into cardiac arrest, so we are now taking the necessary steps to resuscitate it. Not to worry though. We were fortunate to have very comprehensive health insurance and that my conservative approach to money in the past ensured some financial stability during this crisis. We were also blessed to have extremely generous family members, and even friends, standing by and offering to assist if/when we needed it, so we never had to worry, as many people do, about our finances while we were concentrating on more important things, like life! How lucky are we! I am so grateful!

Bo had mixed emotions about returning to work - outside the home, that is. (It would be crazy to suggest that caring for three young boys was not serious work!) He is ready to return to a paid position, but he also knows how much he will miss spending time with the boys. The timing is good as I finish all treatment this week, but there will be adjustments for all of us, as we move into this new phase our lives as a family.

I am off to pick up that toaster. Today is my last dose of radiation, and in another hour, I will be a bona fide graduate of breast cancer treatment!!!!!!!!!!!!

Answering the Call

2007-02-02T11:11:00.000-05:00

As you may have gathered from reading previous postings, my life is forever altered as a result of the journey of breast cancer. Aside from the obvious, and to me relatively unimportant physical alterations caused by the double mastectomy, are the less visible, but far more significant changes to my approach to life and consideration of what is meaningful. I have mentioned in previous postings that I want to use my experience in ways that will help others, whether that is advocacy, education, or support. A couple of opportunities presented themselves this past week...

My friend, Kathi, sent the following e-mail to me.

So I was watching the Today Show this morning while I was getting ready for work and they were doing a thing about the Susan G. Komen Foundation (probably had something to do with their new initiatives...) and they had their house doctor Nancy Schneiderman on debunking common breast cancer myths. And the first one was that breast self-exams were important for catching early cancers. The doctor was saying there is no data to support that doing self exams was at all advantageous in catching cancers any sooner, and that mammography was much more adept at catching cancer.

So Ann Curry kept asking her “but it’s still a good idea to do self-exams, right?” and while she never would come right out and say that she was encouraging people not to do them, she just kept saying there was no data to support their effectiveness and that if women weren’t comfortable doing them, that they shouldn’t worry, just make sure they got their mammographies. I just thought that seemed so odd... it would seem that it couldn’t hurt, and there are going to be women who do find cancerous lumps before (or a month after!) a mammography, and it seemed counter productive to basically advocate against self exams! Anyway, thought you might find that interesting.

Well, I did find it interesting, and I found it shocking as well, so I jumped on my high horse, I trotted over to my computer, and I sent the following message to the Today Show cyberspace Pony Express e-mail.

I was disappointed and concerned to hear that Dr. Nancy Schneiderman was downplaying the importance of self breast exams for detecting breast cancer on your show last week. Although I didn’t see your show that day, a friend of mine was left with the following impression after watching your show: Women who aren’t comfortable examining their own bodies for lumps shouldn’t worry about performing self breast exams as long as they are getting regular mammograms. (Dr. Schneiderman based her comments on studies that do not confirm a conclusive link between self breast exams and early detection.) While Dr. Schneiderman’s comments were surely made in the spirit of alleviating women’s anxieties about self breast exams, and while she was citing actual studies, I believe Dr. Schneiderman’s comments were at best, irresponsible, and at worst, potentially life threatening to your women viewers.

For one, studies aren’t flawless, and follow up studies often report conflicting data. Second, mammography is not 100% accurate. In fact, for young women and women with dense breast tissue, conventional mammography is about 70% effective in detecting tumors. Furthermore, as reported on your website, studies show that dense breast tissue, in addition to being more difficult to examine with mammography, is actual more prone to cancer. (If this isn’t a strong message for self breast exams, I am not sure what is!) Additionally, about 20% of tumors are detected between mammograms, so mammograms can actual give women a false sense of security that they are good to go for another year. Then, there are the women who, for whatever reasons (including finances, accessibility to clinics with the equipment, or time constraints), do not get mammograms on a regular basis. Self breast exams are cheap, quick, and easy.

Instead of encouraging women to rely on imperfect medical technology to detect illness in their own bodies, shouldn’t we instead be teaching women how to become comfortable with their bodies and how to own their health? Afterall, who knows her body better than the woman who occupies it?

I am not a medical professional. I am just a breast cancer survivor. Last year, at the age of 41, I found a large tumor in my breast one month after a mammogram detected nothing. I actually had breast cancer in three quadrants of my breast, and the mammogram showed nothing. If I hadn’t felt the tumor myself and had instead waited another year for my next mammogram, my prognosis would be far different than it is today. I have encountered many women in the past year who also detected their lumps themselves. I am confident that I could fill your studio with women who found their breast cancers through self breast exams. Maybe we are anecdotal, but study or no study, we are living proof that self breast exams work.

I am wondering how many other women walked away with the same message my friend did and who may now feel it unnecessary to monitor the health of their breasts and ultimately their bodies. Since my experience with breast cancer, I have made an effort to educate women about the importance of early detection through both self breast exams and the latest medical technology. Your show is watched by so many women (and their husbands, partners, sons, fathers, etc.). It is unfortunate that the opportunity to urge women to take control of their own health was lost. I may be just an anecdote, but if you wish to communicate a message of empowerment to women, I would be happy to tell the world, via your show.

I received the expected and customary form e-mail response thanking me for my comments and advising me that they receive hundreds of e-mail responses a day and while all e-mails are read, all e-mails do not receive a personalized response. Nonetheless, I felt better for having gotten it off my chest, what's left of it anyway. (Smile)

Also this week, I received a call from the "Tea and Talk" founder, aka the Good Health Fairy, about a young woman in Williamsburg who was just diagnosed with breast cancer two weeks ago at the age of 34. I called the woman, and we spoke for awhile. She has already had a lumpectomy, and two lymph nodes were found positive, so she will begin chemotherapy this month. I offered to meet with her in person and then asked if her husband might benefit from talking to my husband. She thought he would find it helpful, so we are all getting together. I am excited that they are both coming over for dinner tomorrow night and bringing their young daughter as well. The woman is also very interested in joining "Tea and Talk", our informal support group for young breast cancer victors, and now she will have at least met one of us before our next gathering.

While I have a strong desire to turn my breast cancer experience into a positive for others (and for myself as well), I think the challenge moving forward for me is twofold and will require establishing balance. I mustn't allow my newfound passion to interfere with the time and attention that I need to devote to an income producing business. Second, I must take care not to turn this passion into my identity. I am not breast cancer, and I don't want that one chapter of my life to dominate my future. As always, a work in progress I am.

Am I Glowing Yet?

2007-01-23T10:02:00.000-05:00

No, I am not glowing, but I am decorated with beautiful purple magic marker art all across the right side of my chest from my clavicle down to my ribs and under my arm. (How did they know purple was my favorite color?) I have solid lines, polka dots, and dotted lines. While I was getting dressed at home one day, Clay walked in and saw the canvas that my chest has become. His eyes got wide, and he said, “Mom, has Lance been drawing all over you?!” No, but it sure does look like it. As a result, I have been limited to wearing turtlenecks these past few weeks. Thank goodness it is winter. In the summer I guess you just have to go around looking like your three year old went to town with the magic markers.

And, while I am not glowing, after two weeks of being zapped almost daily, the radiated area has started looking sunburned, and it feels kind of sensitive. I have also developed a rash below my collar bone that is quite itchy at times. I was told initially to use only vitamin e cream, and the radiation techs also gave me some aloe vera gel to help alleviate the irritation. If this is as bad as it gets, I can’t complain. I see a doctor once a week, and during my last visit, the doctor told me that my skin looks better at this point than it does on most patients. I always find this type of information encouraging. I guess it’s nice to be “above average” even in radiation treatments. .

When I first began the radiation treatments, they gave me a pale blue card with a bar code and my picture on the outside. On the inside is a grid with lots of boxes. This card has three purposes. When I first get to the office, I wave it in front of a scanner at the reception desk, and it lets the techs in the back know I have arrived. (I guess my strong, bubbly personality isn’t enough to announce my presence, so this technology is necessary.)

Second, the picture ensures that I don’t send an imposter in my place to take my treatments for me. Seriously! Like I could even find people to voluntarily submit their bodies for intense beams of radiation in my stead. (Like I would even want to.) It actually is to prevent medical fraud, and while I don’t understand how you would go about stealing someone else’s medical i.d. to receive medical care, with the cost of medical treatment these days, I definitely understand the motivation!

The third reason is record my progress. Every day, a radiation tech documents the date and initials a box. It actually looks like one of those cards that restaurants give you. Buy five sandwiches, get a sixth free. I asked Noel if the 28th treatment was complimentary, and he said that I get a toaster. I guess that’s quite appropriate since they are literally toasting me every day.

There are usually two techs (most often Noel, Becky, or Liz) in the room with me each day, checking measurements, positioning me on the platform, aligning the machine, playing connect the dots with the magic markers, measuring me some more and then departing the room to push the button on the toaster. They have to come back two additional times to reconfigure the machine as three different fields are radiated each day, beginning with my clavicle. (During that initial appointment from hell that now seems like forever ago, the doctor explained to me that breast cancer advances in a very predictable pattern. It first spreads to the axillary lymph nodes under the arm and then on up to the lymph nodes near the clavicle, so radiating this area will destroy any cancer cells that may have spread and that may have survived the chemo.) Next they do the area under my arm where my axillary lymph nodes once were and also my chest wall. Every other day, they cover me with someone called a bolus that acts like a layer of skin. It causes the radiation to affect the surface of my skin, rather than penetrating more deeply as it does on non-bolus days. The techs work quickly and efficiently, and I am usually in and out of the radiation center in about 25 minutes. I enjoy talking with them, but I keep it brief as I don’t want to distract them and end up having the wrong body parts subjected to the radiation.

Occasionally, there is a student from MCV, Christina, who is also in the room with us. (I feel like my chest has gotten more exposure this past year than a Playboy centerfold!) Noel was explaining to Christina one day how these lines converge here while these angles diverge from these points. Then he would throw in some numbers every now and then for effect. I said to Christine, “I sure hope that you understood what he said because it was totally Greek to me.” The technology is pretty sophisticated, but then they will pull out a little plastic white ruler to double check the converging divergences. I do feel like I am totally at their mercy because it is not like I can check behind them to make sure they are radiating the right spots. (Torture for a control freak!) Not to mention, math was my worst subject, and there is a lot of trigonometry (or is it geometry?) going on. I guess they are pretty accurate – the proof is the huge red radiated rectangle on my upper body.

As you can see, the radiation experience has improved significantly since that visit back in December. My sense of humor is restored. Just as important, it no longer hurts to stretch my arm back behind me while I am on the radiation platform. (Erica, my physical therapist friend was amazed at the progress I made following that simulation appointment. Yea, that’s what 45 minutes of torture will do for range of motion.) Also, the radiation room feels like the tropics compared to the simulation room. When I was originally told I would need 28 treatments, I thought it sounded like an eternity. Since I go every week day, those boxes are filling up fast, and that toaster is almost mine. Today was treatment #19, and yes, I am counting!

As I close, I would like to ask all of you to keep many people in your prayers at this time:

My Auntie Shirley died yesterday at the age of 72 following a three year battle with ovarian cancer. I understand she was courageous throughout the whole experience and gave strength to those around her.

I also lost a great aunt yesterday as well. Aunt Betty was 95 years old and lived a long and remarkable life.

Today, Bo and I found out that an acquaintance of ours was just diagnosed with Stage 4 lung cancer that is also in her bones and liver. She is only 37 years old.

Finally, my almost sister-in-law and great friend, MaryAnne, learned recently that her mother's breast cancer had returned. In speaking with my Dad today, I understand that MaryAnne's mother is hospitalized and is not doing well.

Thanks for keeping all of them and their families in your prayers.

A Tale of Radiation - Part III

2007-01-14T19:54:00.000-05:00

So there I sat in the parking lot in front of the radiation center unable to hold back the tears that had been building not just for the last hour and a half, but probably for the past seven months. It wasn't one of those "why me?" or "poor me" moments. Rather it was a "this really sucks!" kind of breakdown, and it lasted about 15 minutes. Bo listened patiently and sympathetically as I explained what happened, words interupted with tears about every other sentence. Finally, I finished my story, managed to locate my temporarily misplaced composure, and declared myself fit to hit the road and resume my Christmas preparations. Nonetheless, the rest of the day, I was pretty much a basket case, and the slightest anything would summon more tears.

Why the waterworks? Well, I have my theories, but before I get to those, the most basic reason was that IT HURT LIKE #@$!%!!! I was sore the rest of the day. Pure physical pain aside, the rest is theory: The surgery had created a kind of euphoric condition since I was instantly and finally free of the dreaded cancer. I also had had a nice break from any form of medical intervention since the surgery (not that I was ever able to stray far from reality with my companion of six weeks, the drainage appendage). The events that unfolded in the radiation center were a painful reminder that the journey wasn't over yet. Additionally, I really had expected only a brief consultation with the doctor before being sent on my way to enjoy the holidays, so I wasn't psychologically prepared for the "sim". Then there were all the assurances that radiation would be a breeze compared to everything else. Who would have ever suspected that this would end up being the worst appointment since treatment began back in June? Certainly not me.

I am sure the doctor didn't know I was perceiving her as insensitive. I don't believe doctors understand the power they hold over their patients. The doctor/patient relationship by its very nature is out of balance from the get go as you are to a great degree at the mercy of these professionals who have the knowledge and who control the medical treatment plans. Besides, knowing you have a very serious illness tends to make you feel more vulnerable and also puts you in a weakened psychological and emotional state. Then, if you are able to overcome all that, the actual circumstances of the appointments can perpetuate the imbalance of personal power. I actually felt weak and diminished as I lay on the plank half naked while even this very petite doctor towered above me. Not to mention, it is virtually impossible to feel self-assured and project any amount of confidence when everyone else in the room is fully dressed and you're not!

Her adamance that I get my arm into position regardless of the obvious physical pain didn't help things. Even though she didn't ever say these words, what she did say (and didn't say) and her actions made me feel like we had already lost valuable time and that the consequences would be dire if we didn't get the treatment going immediately. I couldn't help it that my body had separation anxiety from the lymphatic fluid, and if time was of the essence, why was the appointment with her scheduled a full week after the drain was removed? My imagination starting getting the best of me. "Is she worried because I had two lymph nodes test positive and she's afraid that the cancer has spread?" I was especially concerned because this was the same doctor whom the plastic surgeon had consulted several months ago when I was considering implants, and at that time, she said it would be okay to delay radiation for a couple months while the expanders stretched my skin. Had something changed in my prognosis that I didn't know about?

In addition to the pain and the mind games and the vulnerability and the over-sensitivity, etc., I guess I just needed to have a good cry. It had been awhile, the pressure had probably reached a point where it needed to be released, and the whole experience in the radiation center was enough to blow off the top.

I had two more conversations with Noel that day. He called back to let me know he had spoken to the doctor and they had found a way to get the necessary calculations completed by next Wednesday. Consequently, I would need to come back for the remainder of the "sim" on Wednesday, and radiation would begin next Thursday, not the following week as we had originally discussed. (Typical conversation with myself ensues: "See? My condition is dire, afterall!" and "No, it's not, they are just anxious to complete your treatment. Relax.")

I asked about treatment times again, and Noel reitereated that he only had middle of the day appointments available, but that other times may open up as we progressed through the treatments. I wasn't very nice. For the first time since I was diagnosed, my frustration got the best of me. I said, "Well, unfortunately, I don't have the luxury of being retired. I have to work, and the middle of the day just isn't very convenient for me." Noel explained to me very calmly and patiently that most of the patients do work and that is why the early morning and late afternoon slots fill up. Not to be deterred from my momentary descent into ugliness, I said, "Well, whenever I am at your office, I only see old people." (Ouch. I regretted it almost as soon as I uttered it.) He agreed that most of their patients were older but many were still working. He also explained that some of the morning slots were taken up by patients who had radiation first followed by long chemo treatments next door at Dr. P's office. With that sobering piece of information, I relented. My dominant personality, the nice one, finally returned. He gave me several time slots, and we agreed that 2:45 p.m. would be my treatment time.

But is wasn't over. I thought about it and then called him back to see if we could do 2:30 p.m. In addition to working, I explained to him, I have three young children and also need to work around their school schedules. I apologized for being difficult. I know he was probably thinking, "This is her life we are talking about, and she's getting all particular about the time of day." That thought served to remind me that I shouldn't get hung up on inconsequential things, but it also became apparent to me by my behavior that day that maybe I was just starting to get worn down by it all...

I decided to get on the treadmill when I got home. That always makes me feel better, right? And it did until a particular song came on my IPOD, and then there I was sobbing on the treadmill. (Remember Rick Astley from the 80's? Cry for Help is an awesome song but can be quite emotional depending on one's state of mind.) Luckily, the sound of the treadmill covered up the sound of my boo hooing, so the boys and Bo were oblivious to it all.

That was the day my brother, John, and his gang arrived, so when we finally got all five boys in bed, and John and I had a chance to sit down and talk, I filled him in on the day's events. He told me that it was okay to cry. He said that I didn't have to be strong for everybody else and that I didn't have to be positive all of the time. It reminded me of something my friend, Betty, said when I was first diagnosed. She told me that I didn't have to be the perfect cancer patient. (She obviously knows me and my pursuit of perfection well.)

It isn't so much that I am trying to uphold an image or that I am trying to be the perfect cancer patient or that I am trying to be strong for the people around me. In fact, I have learned to let go of a lot of things, and I continue to work on this. (Obvious by the state of my house - total disarray!) I have also learned that I can't do it all by myself, that it is okay to receive help from others, and that people actually want to help. This doesn't make me weak; it makes me human. I know all that at one level, but old thought patterns are hard to break, and I am a work in progress. So in spite of all of this newfound, very rational information lurking in my brain, I still can't help how I feel. The main reason I don't want to cry or be sad in front of other people is that I don't want to make anyone else sad. As John and I were having this conversation, his eyes were welling up with tears for me, and this made me cry more. I just don't want to cause anyone else pain. (The other reason I avoid public displays of teariness, and it is a very strong second - I just don't like how I look or sound when I cry!)

But all that being said, the truth of the matter is that 99% of the time, I am not sad. I don't think I am putting on a front for others or for myself. I honestly would rather be laughing and smiling than crying. I would rather celebrate what I have than mourn what I have lost. When I start to feel sad about losing my breasts, I guess I could follow that path and see where it goes, but I think it would lead to sorrow. And that is perfectly okay. The healing process probably does require some time for grieving and the amount probably varies by individual. It's just that when I do start to feel a little sad, like when I see my scars and miss my breasts, my natural reaction is to automatically turn my thinking to how much I love my life, and how blessed I am. It is almost effortless, and for that I am grateful. I will continue to wake each morning with gratitude for a new day, but I'll try not to hide the tears when they need to flow either.

I'm off to radiation. Treatment #12 already. It took me so long to write about the initial experience day that I have since breezed through (really!) the first two weeks.

A Tale of Radiation - Part II

2007-01-07T21:27:00.000-05:00

Sim? What is a sim? I soon found out. Noel, lead me back to a room behind a door with the big radiation warning symbol. The door should should have also had a sign advising unsuspecting souls of a severe climate change. The room was kept at frigid, sub-arctic temperatures. Noel explained that the room was kept at a low temperature to protect the medical equipment (never mind the poor ailing patients!) I had to undress from the waist up and lie down on a hard platform. Noel put a blanket over my lower body and was able to partially cover the left side of my upper body, but I was so cold my teeth were chattering and I was literally shaking.

The purpose of this suffering was to perform a "sim"ulation of the radiation and to obtain some films using a CAT screen. Noel asked me to put my right arm above and behind me. I couldn't do it - my arm just wasn't ready to comply with this request. Noel expressed the importance of getting my arm out of the field of radiation, and I certainly understood this, but try telling my arm that. I asked him if he encountered unreasonable arms frequently, and he said it really wasn't very common. Then it dawned on me. Of course he doesn't run into reluctant arms very often. Most breast cancer patients have surgery, then months of chemo, and then radiation. Consequently most breast cancer patients have at least six or seven months to recover range of motion in their arms. I had only had seven weeks. This insight didn't help matters, but it made me feel better about my inability to comply with the seemingly reasonable request.

Noel seemed stumped so he retrieved the doctor. She stood above me and told me that I just had to get my arm to go back. She squinted at me and twisted her mouth and repeated questions I had just answered not 30 minutes earlier, "Now when was your last chemotherapy session again?" I meekly responded, "October 4." "And when was your surgery?" she continued. "November 1" I replied as if this was something to be ashamed of. "Well, we really can't wait any longer. You need to get your arm back." I told her that I, too, wanted to get the radiation started but that I could only force my arm back so far.

She stayed in the room and tried to help Noel situate me in such a way that my arm wasn't in the field of radiation. I gritted my chattering teeth and pushed my body to the limits of my pain threshold. (I told myself that if I could have three babies without a single epidural, I could endure this, but at least when I was in childbirth, I was rewarded each time with a beautiful baby boy. I actually tried to employ some of the pain management techniques I learned in Lamaze class.) I finally got my arm out of the "hot" zone. The doctor departed, and Noel sympathetically told me that he would go as quickly as he could.

I was probably in the North Pole about 45 minutes, and for that entire time, my arm was screaming out for mercy. I was rearranged a couple of times, decorated with magic markers, tatooed with two tiny dots of black ink, mechanically propelled in and out of the CAT screen machine, photographed, and constantly reassured that it wouldn't be much longer. Finally, I heard the best news I had heard in a really long time when Noel informed me, "You can put your arm down and get dressed."

Back in a temperate climate, Noel and I discussed next steps. I was to come back next Thursday to complete the sim. At that time, they would continue to take more measurements and would give me a third tatoo. Since they didn't want to do radiation for just one day before the long New Year's weekend, they would begin the actual radiation treatments the following week. Okay, now I am not the brightest person in the world, but wasn't the doctor just making it sound like I was knocking on death's door if we didn't get radiation started immediately? I posed the question a little differently to Noel. "The doctor seemed to have a strong sense of urgency about getting the radiation treatments started as quickly as possible. Why the delay?" I asked. Noel explained that some calculations had to be completed before I could come in for the next step and that due to the holidays, the necessary information wouldn't be available until next Thursday. We also talked about available appointment times for my radiation treatments, and I told him that none of them were very desirable as they were in the middle of the day and would interfere with my work. He said that as other patients completed their radiation treatments, different appointment times would open up. We confirmed my appointment time and wished eachother a Merry Christmas

So almost two hours after I had entered the office for what I thought would be a simple appointment, I made it back out to my car. I called Bo, and the second I heard his voice, I lost it. I broke down into tears. These weren't gentle, delicate tears, daintily trailing down your face tears. This was an all out red and swollen-eyed sob fest right out there in the parking lot.

To be continued...

Lighting Up the New Year - A Tale of Radiation - Part 1

2007-01-04T21:09:00.000-05:00

I went to yoga tonight for the first time in nearly three months. It truly rejuvenated mind, body, and spirit. I didn’t realize how much I needed it until the hour and a half was over, but I walked out feeling much better physically and emotionally than when I walked in. My whole body has been out of whack since the surgery and I have all kinds of residual aches and pains as a result, even in parts of my body that weren't directly affected by the surgery. After yoga I felt less constricted and bound up. I am confident that my body will fully recover its physical capabilities because I want it to, expect it to, and will do whatever I must to ensure that it does. I continue to go to physical therapy twice a week, but the yoga seemed to help in ways that even physical therapy hasn't, so I will definitely put yoga back into my weekly routine.

At one point, as I was face down on the mat, I couldn't help but remember the last time I was in that position on my yoga mat, I was lying on my own breasts. (Tonight I was lying on my prostheses, and despite the latest and greatest technology, silicone is just not as comfortable as real live flesh. Next time I think I will leave my breasts at home.) The thought made me a little sad, but I didn’t dwell on it for long. Yoga isn’t about the past (or the future); rather, it is about turning inward and being in the moment, so that is what I did.

I have been so tired this past week. I haven’t even felt like writing in my blog. Even though my holidays were stress-free, I think they were exhausting, nonetheless. Also, I am sure I was not the only one who wasn’t really looking forward to this past Tuesday morning and going back to work. As much as I endeavor to use my new awareness of the preciousness of life to celebrate each and every day, the reality is that I still have days here and there when I really don’t want to get out of bed! I am still a work in progress but I think the solution to this apathy is to find ways of creating more meaning to my life. My new awareness has made me question my current occupation, but until the universe reveals the appropriate alternative, I will continue. Who ever know cancer could cause so many repercussions?

Anyway, I guess yoga combats both fatigue and apathy because after tonight's practice, I was anxious to come home and resume my blog updates… so let me bring you up to speed on my radiation experience…

Everyone has told me what a breeze radiation is compared to everything else one endures during treatment, so the Thursday before Christmas I went in for what I thought was a simple in and out consultation with the radiologist. I thought she would review the information she had discussed with me back in the summer and then we would schedule my sessions. Well, I should have gotten a clue when even my arrival didn't go very smoothly...

My appointment was at 11:00 a.m., but they asked me to get there early. I arrived at 10:50 a.m. (which is very early for me, a long-time sufferer of chronic lateness syndrome). There was no one at the reception desk, so I signed in on the clipboard and sat down in the corner to read magazines. It was probably about 20 minutes later when my cell phone rang. It was Bo, and he said the doctor's office was wondering where I was. Where I was? I was exactly where I was supposed to be - in their lobby, darn it!! I went up to the receptionist and told her that I was there. She probably had figured it out when she heard my half of the conversation on the phone, but she didn't seem very amused by this little mix up and proceeded to hand me a bunch of papework to complete. I reminded her (nicely, of course) that I was the same Mary Beth Gibson with breast cancer that had been seen earlier in the year and had already completed all of the necessary forms. She then informed me very dryly that she would let them know I was there.

Well, the first half hour went pretty much as I expected. The doctor explained that the intent of the radiation is to cause the skin to have a sunburn-like reaction. She said that the new machines work better on internal tissue, but since I had a mastectomy, I have no tissue left between the skin and the chest wall. They have found that they achieve better results in mastectomy patients by burning the skin. When she discussed the side effects with me, she underlined the part about “irritation of the skin with rare blistering or bleeding.” Other side effects include possible scarring of the lung underlying the chest wall, temporary fatigue, and lowering of blood counts. I was instructed to purchase vitamin e cream and to put absolutely nothing on the right chest wall area except for this cream -no deodorent, no lotion, no soap, no perfume, nothing.

I was asked to sign a consent form acknowledging that the doctor had explained everything to me. I read the form before signing it, and I noticed it said that the alternatives had been discussed with me. Alternatives? What alternatives? So when the doctor returned to the room, I asked her what my alternatives were. “You have none,” she said. Oh, okay. Then she added that some other forms of cancer do offer a couple of treatment options. I also asked her about the long term side effects, and she said that there really aren’t any. I do know, however, that the radiated tissue changes in texture and composition permanently, and that is why I can't have reconstruction with implants following radiation treatment. I also know that a family friend who had radiation following a mastectomy years ago has lingering lung irritation that still manifests itself in a wicked cough when she gets sick. All that being said, it’s not like I have any alternatives except to decline radiation, and I continue to welcome any treatment that will increase my odds of never having to do battle with this disease again.

We came to what I erroneously thought was the end of my appointment.

Naïve thought bubble: Okay, well thanks for all of the information, Doctor. My brother and his entourage are arriving shortly, and I have to run some errands, pick up some last minute gifts, grocery shop, go home, do a little bit of work, and cook vegetarian chili. So I guess we can start next week. Merry Christmas.

Thought bubble interruption:

Doctor to the tech, Noel, “Is she scheduled for a sim?”

Noel to the doctor, “No.”

Doctor to Noel, “Well go ahead and do her today.”

To be continued….

Stress-Free Holiday Zone

2006-12-30T22:55:00.000-05:00

I declared our home a stress-free holiday zone this year. In fact, I put a sign on the front door stating:

Stress-Free Holiday Zone

All Ye Who Enter Must Leave Ye Worries at the Door

Prepare for Lots of Noise, Chaos, and Commotion

Also in Great Abundance Are Love, Joy, and Gratitude

One thing I have learned this year is that compared to cancer, everything else is pretty insignificant. It's all about keeping things in perspective. Also, I believe stress is a condition we create for ourselves either by the expectations we put on ourselves and/or others or by how we choose to react to the circumstances around us. These insights I hope to carry with me for the rest of my life, a life that will be more richly and fully lived as a result of these and the many other lessons learned this year from breast cancer.

It was probably the busiest Christmas I can remember, but the happiest, too. Between the sign and my new attitude, this Christmas was also the least stressful of my adult life (even though it had many elements known for contributing to stress). Since we knew I would be starting my radiation treatments sometime in December and wouldn't be able travel out of town, my family made the decision to celebrate Christmas in Toano this year. My brother, John, his partner, Eric, their nanny, Janine, and my two nephews, Kyle (5) and Daniel (2), arrived from Massachusetts the Thursday before Christmas and stayed with us until the following Thursday. My other brother, Jeff, and his wife, Julie also came from Massachusetts for the week, but the inn was full, so they stayed with Julie's parents. My Dad and Laura visited every day that my brothers were around.

A proponent of "The More the Merrier" philosophy, I extended an invitation to Bo's Dad's side of the family on Christmas Eve, for a grand total of 25 of us. On Christmas Day, we invited Bo's Mom's side of the family over for a grand total of 26 people. I had lots of helpers, and everyone brought food, so I really only had to delegate and coordinate. I also realized (after a mere 41 years) that I am not responsible for everyone else's happiness. I provided the venue, but it was up to everyone else to manage their own respective moods. This newfound knowledge has been very liberating and went a long way towards delivering a stress-free holiday - for me, anyway.

On a few occasions, family members had to remind eachother to go read the front door, but for the most part, it was just one fun week of eating, cooking, shopping, eating, talking, laughing, eating, Scrabbling, playing, and just enjoying being together... eating. I was sad to see everyone go, but Jeff is coming back to visit next month, and the family will be together again in April for my Dad's and Laura's wedding. Not to mention, we will all be together for the Pan Mass Challenge in August.

While I look forward to all of these events in the future, I learned another important lesson this year - enjoy each and every moment of NOW, even the most routine, as the present is all that any of us are guaranteed. So now that everyone is gone, it is back to our routine, and that, too, is nice.

To B or Not to B

2006-12-22T23:44:00.000-05:00

One of the many positive outcomes of this cancer experience has been having so many wonderful people walking beside me along the journey. Of course my friends and family have been with me every step of the way, but I have also met a lot of new friends along the way. Alice, one of Bo's landscaping customers and a breast cancer survivor herself, is one of my new friends. Ever since she heard about my diagnosis from Bo, she has been doing so many things to support both me and our family - from sending cards, books, and gifts, and baking blueberry pies (my favorite), to arranging dinners to be prepared and delivered by the ladies of the Stonehouse neighborhood for the entire month following my surgery. This week, she scheduled an appointment for me to go to Richmond to get fitted for my prosthetic breasts. (Alice had a lumpectomy and didn't a prosthesis; however, she had visited this particular store for wigs while she was undergoing chemo.)

Alice picked me up promptly at 10:00 a.m for my 11:00 a.m. appointment. I wasn't sure what to expect. How is one "fitted" for a breast prosthesis anyway? I was soon to find out. It is, I imagine, much different than being fitted for an artificial limb prosthesis as basically, the "fitter", Linda, just asked me what I wanted to be, an A or a B. What happened to C and D, I wondered??? My guess is she was trying to avoid the Dolly Parton look. I, without any hesitation, said B. Afterall, I was a B before the surgery, so of course, I was just trying to replicate to the extent possible, my God-given attributes. I am thinking that I was much easier to fit than most mastectomy patients as she wasn't trying to match a prosthesis up to a remaining breast.

Linda showed my a variety of bras. My insurance reimburses the cost of the prostheses and "basic" bras. If I wanted the upgraded bras, I would have to pay the difference between what the insurance reimbursed and the cost of the bras, and that difference usual amounted to around $13.00, she said. Wow! What a bargain. I haven't paid just $13.00 since I was in training bras. She said that due to her inventory being so low at the end of the year, she wouldn't charge me the difference so even though I selected very basic looking bras, I don't know if they were the upgraded ones or not. I have never been that particular about bras, and I am certainly not going to start now. I just didn't want industrial strength looking lingerie which many of them were. There was a black shiny one that kind of resembled leather, and I asked her if it came with a whip. It didn't. I think she knew I was kidding. (I didn't select that one, by the way.)

Linda instructed me on proper care of my new prostheses, advising me to be cautious when handling them, especially with sharp fingernails, to avoid pricking them with pins, and to wash them regularly. Not entirely different from real ones. Then she stressed that they needed "rest" and should be placed upright when not in use. Okay, now that is getting a little high maintenance for silicone. The insurance company will allow me to replace them every two years, and will reimburse for new bras every year. The shop even carried bathing suits that accommodate the prostheses. (I hadn't thought about that... Finding a bathing suit just got even harder than it used to be. Luckily, it is not an essential part of my wardrobe.) They also had mastectomy sports bras and camisoles. I left with just a couple bras, with another one order. Linda only had one B at that location, so after lunch and a little bit of shopping, Alice and I headed over to their Southside location to get the other half of my new chest.

I didn't try on my new breasts until the next day when I had the occasion to get dressed up in something other than a sweatshirt and jeans and go somewhere other than my usual Walmart run. When I put them on... VAVOOM!! I guess before surgery I was barely B, like a B-. Now I am like a B++. (In Bo's opinion, and he is certainly the leading expert on the appearance of my breasts, they aren't that different from the originals, but I definitely think they are more prominent.) I briefly considered trading them in for some As, but I think they are fine. As Laura said, I earned these. I kind of feel fraudulent, like its false advertising, but since Bo is the only one who'll ever be "using the product", I guess its ethical. Besides, as my friend Erica reminded me, how many women these days truly are misrepresenting themselves through the use of plastic surgery? Our culture's whole obsession with breasts (and external "beauty" in general) is a topic for another day, but I personally don't want to get caught up in it at this point in my life.

The prostheses are actually fairly comfortable; although, I have heard they do get hot in the summer. I feel "natural" again when I am wearing them, compared to the foam inserts for my camisole that were neither comfortable nor authentic looking. The inserts liked to wander, and I would look down only to realize I was lopsized and misshapen. I would inconspicuously try to rearrange myself, but it was hard to be subtle. Linda asked me if I was planning on reconstruction, and I am still not inclined to go that route. At this point, I am satisfied with my body as it is, and I now have the option of "accessorizing."

I am grateful for Alice. If she hadn't scheduled the appointment and physically transported me there, I don't know when I would have gotten around to it on my own, and I really am glad I have the prostheses now. Plus, she really helped make a fun day of it for me, treating me to lunch, buying me a new winter hat, and just spending time with me. We gabbed non-stop from Toano to Richmond and back. I guess since she has "been there", she knows even better than I do what I need, so she doesn't wait for me to ask. (She probably also understands that even if I did know what I needed, I may not ask.)

As I was laying in bed that evening, the prostheses "sleeping" on my dresser, I couldn't help but think, sorrowfully, about how I am now the third generation of women in my family to wear a breast prosthesis... God willing, I am the last.

Royal Update

2006-12-18T23:03:00.000-05:00

The drain is history. I evicted it. I frankly got fed up with the extra appendage and willed my body to dry up, and it did! (I wish my kids would listen so well.) After five weeks of shower deprivation, limited mobility, wearing loose fitting clothing reminiscent of my immediate post-maternity days, and twice daily sessions of draining and measuring the seemingly endless supply of lymphatic fluid, I had a serious conversation with myself. It may sound a little “out there”, but that’s where I’ve been hanging out for the last six months or so anyway. I do believe in the body’s ability to heal itself, and I felt very empowered after reading Deepak Chopra’s latest book (compliments of my friends, Carrie and Melissa). Within two days of having THE conversation , I went from 80 cc’s to 50. The following day, I was 20 and the next, 10. Never underestimate the power of a motivated woman!

I was already scheduled for an appointment to see Donna so she could check out the wound but she was actually able to perform the final drain removal. There wasn’t much fanfare, but I walked out feeling so excited and happy that I had my body back. I had been deliberately limiting my movements as to not dislodge the drain, and it feels so good not to worry about that anymore. I would like to say I got my “groove” back, but I don’t think I ever had it to begin with…. Nonetheless, last weekend, I put on that funky music, and the kids and I had a dance party in our family room.

I had promised myself a drain-removal celebration shower of extended duration, but when I finally was able to take a shower, I was running late (story of my life), and I had to cut it short. I made up for it the next day, however. It’s such a simple thing, I know, but the next time you are in the shower, pay attention to the sensations. Pleasure can be found even in the routine when you take the time and make the effort to just be aware.

I have an appointment to see the radiologist on Thursday, and I guess at that time, we will schedule my six to seven weeks of radiation treatments....

Bo is finishing up his latest round of medicine with minimal improvement to his symptoms. He is scheduling an appointment to see a rheumatologist friend of ours after the holidays. Of all of his symptoms, most noticeable to me is his impaired short term memory, but since I am still experiencing major chemo brain, this is not a bad thing. Our conversations go something like this: “Bo, was it you that I was telling about the – insert whatever story here – or was it someone else?” Blank look on Bo’s face. “Oh, well you wouldn’t remember anyway, so I will just tell you again.” I think we are having the same conversations over and over again but neither one of us can be certain. It’s best that way.

King of Pain

2006-12-07T21:41:00.000-05:00

I haven't provided an update on Bo lately, and it's not because I only think about myself (really!) but rather because we still don't have any answers. If you will recall, earlier in the year he experienced what I affectionately called a sympathy cyst under his left nipple. He had a mammogram and an ultrasound and was diagnosed with something called gynecostomia. Following a battery of blood tests ordered by his urologist, the cause was still undetermined, and his primary care physician, apparently puzzled beyond her capabilities, just kind of gave up on him. Since then, Bo's symptoms have increased to include joint pain, swollen lymph nodes, fluid retention around his ankle, blurry vision, headaches, and probably a few more things I can’t recall at the moment. (chemo brain) That reminds me, memory loss is also one of his symptoms. He switched primary care doctors, and his new doctor sent him for physical therapy for his hip. (We are on the “family plan” at Erica’s practice which is a little kinky if you think about it….)

Erica suspects something is wrong with Bo’s back while his latest doctor suspects Bo’s hip is the problem. The doctor ordered an MRI for the back and hip, but the insurance company would only approve the MRI on the hip. (Deep sigh of frustration and resignation.) So last week Bo had dye shot into his hip and experienced the melodic (deafening), cozy (claustrophobic) MRI machine. (How many couples can say they both shared the experience of a mammogram and an MRI in the same year? It’s not a distinction to which we aspired, but bonding opportunities present themselves in unusual ways sometimes.)

So about $4,000 later, and to no one’s surprise, except apparently the doctor’s, we officially learned that there is nothing wrong with Bo’s hip. At least I had a diagnosis, and although I didn’t like the diagnosis, I was able to work with my doctors to develop a treatment plan to combat my illness. (I never thought I would enjoy using the past tense so much. I didn’t even derive this much pleasure from putting my first marriage into the past tense!) Bo, however, is caught in a physical and emotional purgatory. Not only is he experiencing troubling physical symptoms, he is anxious about the lack of a diagnosis, and consequently the inability to develop a plan of action to combat whatever illness is causing his problems.

So what to do? Visit the internet, of course. After researching his symptoms and talking with a friend of ours who has Lymes disease, Bo is pretty certain he has Lymes. It makes sense for an outdoorsman such as Bo. He gets tick bites the way “normal” people get mosquito bites. Doctor #1 did give him antibiotics earlier this summer after Bo reported he had recently pulled a couple of ticks off of himself. (I got the privilege of removing the one that set up shop in Bo’s belly button. Now that was quite a sight to see – Bo standing in front of me, with me on my knees trying to yank that thing out with tweezers. I don’t know who giggled more –Bo because it was tickling him so badly or me because the scene was so utterly ridiculous.)

Bo presented a list of Lymes symptoms to his current doctor, and after acknowledging that Bo does exhibit a number of them, the doctor agreed to treat Bo for Lyme disease with another round of antibiotics. If the antibiotics don’t eliminate Bo’s symptoms, the doctor will refer Bo to a rheumatologist to continue investigating his mysterious ailment. In the spirit of financial, uh, prudence, I told Bo to advise his doctor that we really needed to get this thing figured out by the end of the calendar year since we have already met the family deductible on our medical insurance for 2006! Bo knew I was (mostly) kidding and that my primary concern, despite my fiscally conservative nature, is first and foremost, his health. (Really!)

Queen of Drain

2006-12-03T20:02:00.000-05:00

I am not sure what the world record for post-mastectomy drain duration is, but I am certain I must be in the running. In fact, my drain has applied for permanent residency. I had the opportunity to visit with Santa a week or two ago, and while I was perched comfortably on his lap, he of course asked me what I wanted for Christmas. At the time, I told him my hair. If asked today, I would request a drain-free body. (Actually, I want both!) Thirty ccs is the magic number, and I am still draining in excess of 70 ccs in a 24 hour period. At the rate I am going, I may have a full head of hair before I have a drain-free body. If hair grows at a daily rate of (y x 3 - ab), and lymphatic fluid drains at the rate of (x + 5)(y + 2), and Santa's sled leaves the North Pole five hours later, which will arrive first?

I called Donna, the nurse practictioner, last week to see what, if anything, I should do/could do. She suggested I give it one more week. She asked me how much I was moving around and when I admitted that I was probably a little more active than the average mastectomy patient, she strongly suggested I take it easy. Well, I did take it easy for me, and I definitely reduced my activity level, and still, I drain in large quantities, darn it! Well, it is mostly just an annoyance, and as long as it doesn't mean that something is wrong, I can be patient... for now.

I began physical therapy last week. One of my friends, Erica, happens to own a physical therapy practice. Erica and I became acquainted when I was dating Bo. Her husband and Bo had met on the mountain bike circuit, and when Erica and I were introduced to eachother, we immediately hit it off. Ten years, two husbands (one apiece), two dogs, and six kids later (she has three also), I find myself on her physical therapy table and under her gentle and capable care. We always bemoaned the fact that our lives were so busy that we weren't able to get together as often as we would have liked. I told her that it was pretty sad (and extreme) that it took cancer for us to see eachother on a regular basis, but getting to spend time with Erica and having her involved in my healing is one of the many gifts that has presented itself along the way.

She measured the range of motion of each arm. We are aiming for 180 degrees. On the left side, I am at 140 degrees. On the right side, I am at 117 degrees. She sent me home with four exercises I can do on a daily basis. As my body heals from the surgery, I guess it is the scar tissue that I feel tightening things up, kind of like cement drying. It doesn't hurt, but my movements certainly are restricted, and if I move my arms too much in a certain direction, it does hurt. Erica says to do my exercises only to the point of feeling the stretch, not to the point of feeling pain.

I told Bo yesterday that my breasts hurt. He asked, "What breasts?" Oops. Oh yea. I meant where my breasts used to be. The incisions are healed, but the area is sensitive to the touch, to the point that the foam inserts (my temporary shape) can cause discomfort. I do not want to wish my life away, but I am looking forward to the day when the surgery site is completely healed, I feel no pain, and I can move my arms the way I used to. Not having had surgery before, and not having fully discussed recovery with Dr. H, I don't know if this is a realistic goal, but realistic or not, it is certainly my objective.

One evening right after the surgery, several of us were sitting around the dining room table, doing what we do best, eating and talking. I mentioned that I had read that some women report "phantom pain" following mastectomies. As happens with people who lose limbs, these women actually feel pain in breasts that no longer exist. Jeff, ever the family wit, suggested that maybe I would get lucky and feel "phantom pleasure." Hee hee.

Let the Healing Begin

2006-11-22T13:32:00.000-05:00

Bo and I went to see Dr. P yesterday for my first post-surgical visit. Armed with my newfound knowledge of lymphedema, I asked her to write a prescription for the compression sleeves. While she had the pad out, I also asked her to write a prescription for a right and left prosthesis and for the mastectomy bras. Now I just need to go get fitted for all of the above.

I asked her when my hair should start coming back full force, and she said that six weeks following the last treatment, the chemo drugs should pretty much be gone and my body should begin healing as it regenerates the different types of cells that were killed by the chemo. (It has been seven weeks since my last treatment, so now I keep looking to see if my hair is squeezing out of my hair follicles like playdoh out of the fun factory, but the growth isn't quite that dramatic.) It's funny, but because I didn't really experience any other physical effects from the chemo, I forgot that the drugs did also take a toll on other parts of my body and that the regeneration involves more than just hair. I feel so great now, that I expect I will feel really incredible once my body truly has healed, inside and out. As proof that I am "normal" again, I received a flu shot while I was there. Yea! My immune system is no longer compromised! Ahh.. to be a able to celebrate a flu shot is a wonderful (and weird) thing.

Of course, I still have radiation to get through, but she said that I should breeze through that. I had heard that it will make me tired, but she doesn't think that will be the case. "After six weeks, the cumulative effects may make you yawn around 4:00 p.m., but I doubt you will really be affected," she assured me. First, I have to get the last drain tube removed, but once Dr. H gives the go ahead, my sessions with the "burn" doctor will begin. I also asked Dr. P when I could begin exercising and she sees no harm in me returning to the treadmill, as long as I don't work the upper body. Yahoo! Another thing to celebrate - getting on the treadmill.

She did a physical exam and was impressed with the surgical site. She said it looked really good. Uh huh - for a skinny chick with no boobs and two huge scars, maybe. Donna, Dr. H's nurse practictioner, had said the same thing, and I wasn't quite sure how to take this. I mean, it doesn't look that bad to me, but it doesn't look that great either. I, of course, don't really have a basis for comparison. Dr. P said that some women have bumps and lumps left after the surgery and that it can be really uneven. She also said that since I was so slender I didn't look out of proportion like many women do after losing their breasts. I haven't really struggled with body image since the surgery, so I think I am going to be okay leaving things just as they are. I do want to have the prostheses for when I have the urge to look more shapely and less, uh, concave.

I had come prepared with my copy of the pathology report, so we spent a few minutes discussing some of the terminology I didn't understand. She was just so positive about my entire response over the past six months that her enthusiasm was contagious. "You have responded phenomenally well, and like you told me when you first came in here, there is no reason to expect that you will ever have to deal with this again." She did caution that this is the time that depression may set in because I won't be coming in to her office regularly for visits and treatment.

I think if this happens it will be more likely to occur after the raditation is completed, but reflecting on the past couple of days, I affirmed that, "Yes, I can sense that it may be starting to settle in just a little." (She said she could tell, but I am not sure what she was picking up on because I thought I was being my usual, cheerful, optimistic self...) I related to her that I had just read an article on menopause and it had explained the effects of decreased levels of estrogen. Since estrogen promotes feelings of nurturing, as the levels decline, women may become less likely to bite their tongues when they'd rather speak their minds, may be more inclined to express anger, and may start taking better care of their own needs than they had in the past and not be as focused on the needs of others. With visuals for affect, Dr. P agreed that I may start feeling like drop kicking family members soon.

It sounds like I have all kinds of emotions and new feelings and behaviors to look forward to (and Bo too) - some attributable to the chemical changes within my own body, and some the result of me redefining myself and my life following the diagnosis. Bo told Dr. P that he had been dodging the frying pan at home, and Dr. P offered to be on call to stitch him up as needed. The frying pan story is a bit exaggerated as violence isn't my thing (and the article didn't mention estrogen-deprivation may make it my thing), but Bo and I have had some heated exchanges in the past few days, a rarity for us. And he thought PMS was bad!

It would be unrealistic to think that such huge event in our lives would leave either of us or our relationship untouched. I guess our marriage can be compared to my body. My body has been through a lot, and I have the scars to prove it, but I have chosen to take the necessary actions and make the necessary lifestyle changes to be even stronger and healthier than I was before the cancer. Bo and I have a choice to make too. We can use this experience as an opportunity for our marriage to grow, and we can apply the effort necessary to build an even stronger, healthier relationship than we had before... or not. I know our marriage was already pretty fit and healthy before the diagnosis, so now we just need to commit to working together and taking the actions necessary for us to heal, regenerate, and grow even better than we were before. The long term prognosis is very good. I will keep you posted...

Tea and Talk

2006-11-22T11:30:00.000-05:00

Back in September, my friend Angelia, gave me a wonderful gift. She signed both of us up to attend a retreat for breast cancer survivors, an annual event organized by Dr. D, my radiologist. (The psychology of it is kind of strange… I had seen the flyer at the Women’s Imaging Center, but because I still had the tumor in my breast, I didn’t consider myself a survivor yet, and so I wasn’t planning to go to the retreat.) Angelia, knock on wood, hasn’t had breast cancer, but has spent a fair amount of time at the Women’s Imaging Center. When she saw the flyer, she immediately called me and asked if she could sign us up.

I am so glad we went. The retreat was wonderful. The day was spent with 20 other women who had had breast cancer or who were currently undergoing treatment for breast cancer. We were treated to yoga (by my instructor, Joy), a chair massage, a drumming circle, tea with the doctors, discussions with a counselor who works with individuals dealing with serious illnesses and their families, and really yummy food. The day also offered the opportunity to spend time with others who could really understand and relate to the shared experiences of breast cancer as well as an opportunity to hear each other’s unique perspectives.

It was at this event, I met Renee, a woman who was diagnosed with breast cancer in her early 50s and decided her approach to overcoming the disease would be humor. Thus, her alter ego was born. An instructor at the William and Mary Law School by day, Renee becomes the Good Health Fairy when a different kind of assistance is in demand. This attractive and dignified women dons an elegant evening gown and tiara, ties her pink high top tennis shoes, and armed with wand, goes where smiles are needed. It is not just our heroine’s costume that elicits smiles, but her own bright countenance and sincere concern for all. Her presence can’t help but warm the heart and spirit.

Due to the nature of breast cancer, and its typical onset being later in a women’s life, most of the other women at the retreat were in their 50’s, 60’s and even 70’s. There was a woman who was 35, and another who was 39. I began to talk to Renee about how many wonderful breast cancer survivors had reached out to me in love and support, but before that day, I hadn’t found any in the Williamsburg area around my own age. She agreed that breast cancer at any age is a scary experience, but that younger women may be dealing with different issues, like raising small children. Thus the seeds for “Tea and Talk” were planted.

Our heroine collected names and e-mail addresses and shortly after our initial conversation, sent an invitation to five young breast cancer victors to meet at her home on a Sunday afternoon in October for tea and talk. Our second gathering was this past Sunday. Three of the original five of us were in attendance, and we were joined by a lymphedema specialist, Amy, from one of the local oncology practices.

Amy was great to share both her Sunday and her extensive knowledge of lymphedema with us. I became a little overwhelmed by the information, and as I expressed my initial response to it all, “This really sucks!”, my voice began to quaver, and my eyes became watery. Renee went in search of tissues. You survive the cancer and its severe treatments, you think everything is going to be fine and that you can return to your pre-cancer state of health (or better) and then you learn that you have to deal with the risk of lymphedema the rest of your life. It does suck, but how wonderful that I could be in a room with three other women who could understand my pain and frustration and who could both validate my feelings and encourage me.

Like all the other times on this path when I received new information that wasn't what I may have wanted to hear, I just needed a little bit of time to absorb, adjust to, and accept what I heard. Here's the lowdown in one paragraph or less: Because most of the lymph nodes on my right side have been removed, my lymphatic system is compromised. This puts me at risk for severe swelling of that arm if the lymphatic fluid isn't able to drain properly. I should wear a compression sleeve and glove from this point forward when I fly or when I am exercising. I shouldn't go into hot tubs or saunas. I shouldn't lift anything heavy, even grocery bags, on that side, or carry my purse on that shoulder. I have to be careful not to get any cuts, bug bites, sunburn, etc. on that arm, hand, or surrounding area. If I go for a full body massage, I shouldn't have the arm or surrounding areas massaged. (Alas, this last one will have little to no impact on my life.) When I write it down now, it doesn't sound that bad, and it really isn't in the grand scheme of things. Afterall, I am alive, and that is the most important thing, but it is still just a big pain in the butt, a lifelong health consequence of the cancer I thought I could put behind me.

Amy mentioned some of the symptons that would warrant a call to your doctor. "Which doctor?" I asked. "I have one who poisons me, one who burns me, and one who slices and dices me." Ironically, while it is the radiation and surgery that puts one at risk for lymphedema, it is the oncologist who pretty much coordinates the various components of treatment, so Dr. P is the one I would call. The overall risk of lymphedema is pretty low, but one of the woman in our group does have it and was able to relate her experiences. The good news is that I am now armed with information and can take the necessary precautions. I left the group feeling a little depressed but also buoyed by the strength and support of my new friends.

A Return to the "Routine"

2006-11-18T20:52:00.000-05:00

This past week saw our lives return pretty much to their pre-surgical routine. After nearly two weeks with company, our last guest departed last Sunday morning. My brother, Jeff, stayed with us for nearly a week at the time of the surgery, and even though he wouldn't do windows or wounds, he was still handy to have around for entertainment purposes. The boys love to wrestle with their Uncle Jeff, and he complied with their frequent requests. Jeff and I played countless games of Scrabble, most of which he won. (In our family, when it comes to Scrabble, there is no mercy shown, apparently not even for the recently hospitalized or body part-deprived members.)

Shortly after Jeff's return to Massachusetts, my friend, Ann, arrived from Blacksburg for several days to keep me company. She was one of my Mom's best friends and is like a second mother to me. The boys know her as Nanny Ann, and I refer to her as their Irish Memere. Then, another dear family friend, Patrik, aka Blue Toenail (I think there is great potential for a band names here), visited over the weekend. He lives in Sweden but was in Kansas on business and figured since he was "so close", he would stop by to see us. I am very glad he did. We hadn't seen him in the three years since his last visit to the states. Nothing much has changed except he has more hair than me now, but not by much!

(I haven't obsessed over the topic of hair lately, so I may as well provide a little update: It only took a week to fall out, but it sure is taking its sweet old time coming back. When it fell out, I noticed it departed in the male pattern baldness manner - first in the front and top and then on the sides and back. Its return is much more gradual, but in the same manner. I have noticeably more growth on the sides and back than in the front and on top, but even if the "comb-over" were possible, I just don't think it's me. The hair is thin, but what is coming in seems to be kind of curly, as I have heard it might be. There is more gray mixed in than I would like, but as Bo reminded me, "It is hair." Good point. There is not much progress on the eyelash or eyebrow front, but I am sure that once the chemo is fully out of my system, which should be very soon now, I will have a flurry of new growth everywhere. Due to the blatantly unjust nature of chemo, the one place where the hair seems to be making a quicker comeback is on my legs. Last place to lose it, first place to regain it. Well, if that is a sign of my hirsute future, I will take it, and I will never complain about being hairy again!)

I took two more days off before returning to work on Wednesday. Since I have a home-based business, returning to work wasn't a significant event. It merely meant commuting from my bedroom to my office sometime during the morning hours and getting back into the routine of work. I was able to catch up on e-mails and phone calls, and I went to my weekly networking meeting on Friday morning.

Of course it wouldn't be a routine week these days without a visit to one of my many doctors, and this week, it was back to the surgeon's office on Friday. I saw Donna again, and she removed drain #3. For some reason, it didn't hurt that much this time - maybe because I knew what to expect. For the first time ever, I went to the office without Bo (he was working), but Sharon, one of the nurses, graciously allowed me to squeeze her hand during the drain removal process. I also had fluid build up on the left side, where the drains had already been removed. It looked like I was growing another breast, but it was quickly "deflated" with a syringe.

Donna mentioned that she had spoken to Dr. H, and he said we definitely needed to proceed with radiation. I asked if Dr. H was otherwise encouraged by the pathology report, and she said, "Well, he would have preferred no positive lymph nodes." Yea, me too. I always seem to leave that office in such a funk. Dr. P focuses on the 25 lymph nodes that aren't positive. Dr. H focuses on the two that are. It is fascinating to observe first-hand how the different attitudes of the doctors can have such a dramatic effect on a patient's own attitude. Both doctors have all of the same clinical information about me specifically and about breast cancer in general. From my very first visit with him though, I have felt like Dr. H has been much more doom and gloom about my situation than Dr. P. Interestingly enough, also from the very beginning, Dr. H has emphasized the importance of maintaining a positive attitude, so I am confident that he is unaware of how what he says or doesn't say has a negative effect on me. (I probably tend to read more into things than the average person though.) That all being said, I am glad he is my doctor. He is an excellent surgeon, and I have never doubted for a single moment that he is 100% committed to my health and well-being.

I am still draining copious amounts of fluid from that last drain, so if I am able to give thanks for its removal prior to Thanksgiving, I will be surprised. I am anxious to be drain-free for several reasons. While the weight of this last drain no longer drags my "shape" south, it does limit my movements somewhat. I can't exercise yet, and I really miss the mood enhancing endorphin release I was getting from my almost daily appointment with the treadmill. I still have to be careful how I sleep, too. Also, I haven't been able to take a shower or real bath in over two weeks! It's not as bad as it sounds though. I am able to get in a bath tub with a few inches of water and use a wash rag to clean up. I don't seem to be driving people away in droves, so I guess it is working. Nonetheless, I am looking forward to a long, hot shower, or a deep, luxurious, bubble bath one of these days soon! It is so easy to take for granted these simple pleasures in life. It is a lesson I hope not to forget once all of "this" is behind me.

The Pathology Report

2006-11-10T08:59:00.000-05:00

Bo and I returned to the surgeon's office on Thursday, and I was able to have two of the four drains removed. I asked Donna, the nurse practicioner, if it would hurt, and she said she doesn't get many complaints. That is because people are apparently speechless after stifling back their screams of agony! She first had to wrestle with the tight stitches Dr. H had placed to hold the drain tubes in place, and after she was finally able to snip those, she then pulled the drain mechanisms, all six inches worth, out of my body. Ouch! I didn't want to be among the few complainers, so I just grimaced furiously and squeezed the daylights out of Bo's hand.

I have an appointment on Monday to remove the other two, provided the amount of fluid draining from each is fewer than 30 ccs in a 24 hour period. At this point, it looks like I am going to have to reschedule as the drain tube closest to the area where the lymph nodes were removed is still draining in excess of 60 ccs daily. I have mixed emotions about that appointment. I want those suckers out for sure, but I just don't relish the removal process.

When I first arrived and as the nurse's aid checked my blood pressure, she mentioned that the pathology results were back. Then Donna walked in, and I was trying to read Donna's demeanor and expressions as she was doing her thing with the drain tubes. Was she artificially cheerful or just her characteristic gregarious self? Did she seem nervous or was she just intent on causing me as little physical pain as possible as she removed the drains? Here I was driving myself crazy, making interpretations about the pathology results from Donna's behavior, and it turns out that Donna didn't even know they were back. She was seeing the results herself for the first time as she read them to me and Bo.

Basically, Donna's summary was that the cancer had responded to the chemo and that I had two out of 27 lymph nodes test positive. I had some questions she was unable to answer, and I asked if I could see Dr. H. She said that he was busy preparing for a big presentation and that he was soon undergoing surgery himself and as such would be unavailable for awhile. She said because my case was an unusual one (not a distinction one wishes to have at time like this), that it would most likely go before the tumor board again for review, but she was thinking radiation would be in my future. (By unusual, I believe she was referring to the seemingly sudden onset and aggressive nature of the cancer. ) She offered me a copy of the pathology results and told me she would call me about the tumor board, as she didn't know who would present the information in Dr. H's absence.

So, I walked out of the office, report in hand and nerves on edge. Remember that whole new attitude thing I wrote about a couple of days ago with such bravado? It had completely disappeared as I read the report and interpreted the medically terminology as negatively as I possibly could for reasons that defy explanation. Despite my generally optimistic outlook, in the absence of information, I have this debilitating habit of always assuming the worst. I was approaching the ledge, and Dr H was not available to pull me away (or push me over).

It was about 4:30 p.m., so I called Dr. P's office, knowing that if I didn't reach her that afternoon, she wouldn't be available again until Tuesday. I couldn't go the whole weekend applying my own interpretations to the report. The receptionist told me that she would relay the message to Dr. P but because it was so late in the day, she didn't know if Dr. P would call me back. I left my cell phone number, optimistic that Dr. P would sense my state of mind and respond in her usual competent and compassionate fashion. I also called my brother, John, whose good friend is an oncologist, to see if I could fax the results to Joe in the morning for deciphering. Then I waited.

The report pretty much confirmed much of what we already knew about the type of cancer: Infitrating ductal carcinoma, well differentiated, estrogen receptor positive, progesterone receptor negative, her-2/neu negative. It also indicated, among other things, the following: there had been prominent therapy effect, two out of 27 lymph nodes tested positive for metastatic carcinoma (largest focus 7 mm), the margins were negative for malignancy, the size of the invasive component was 1.8 cm, the tumor was multicentric with multiple foci of residual infiltrating ductal carcinoma in upper outer, lower outer, and lower inner quadrants.

See what I mean? What exactly does all that mean? What I did know is that the tumor at the time of the initial diagnosis, measured 3.5 cm. by ultrasound imaging. After the first four chemo treatments, it was 2.6 cm, and it was now measuring 1.8 cm. so I interpreted that favorably; although, I wish it had totally disappeared. There were other suspicious areas found by the initial ultrasound, but they were never biopsied since I was having a mastectomy, and from a treatment standpoint, it really didn't make a difference if they were cancer or not. Turns out they were cancer afterall. (I keep going back to how a mammogram in March could have possible missed multiple tumors that had infiltrated three out of four quadrants of my breast! I guess we will never know.) I took the word "residual" to be a positive thing, but again, I wish that the cancer had been limited to the one quadrant and that it had disappeared altogether.

I was very discouraged that I had two lymph nodes test positive, even after all that chemotherapy. I wasn't sure how to interpret that since only one lymph node was detected during the initial ultrasound and it had tested positive, but the subsequent PET scan and MRIs had detected no lymph node involvement. Had it spread while I was undergoing chemo?

The pathology for the left breast showed microcalcifications and atypical ductal hyperplasia - aka - precancer. We make a number of significant decisions in a lifetime. Many times we never know if we really made the right decision. Many times we convince ourselves we made the right decision because things turn out okay and we have no way of ever knowing how things would have ended up if we had taken a different course of action. In this case, I have validation that I absolutely did the right thing and that my intuition was right on. I don't think I ever would have second-guessed the decision to prophylactically remove the left breast, but it sure feels good to have confirmation that I most likely averted a second trip of this life changing journey I plan to travel only once!

My cell phone mercifully rang during dinner, and it was Dr. P. Thank God for her! She did a very effective job of pulling me back from the ledge. In fact, she was enthusiastic about the results, saying that we had "nuked" the cancer and that what remained was "swiss cheese." As many times as I read that report, I never saw the words "nuked" or "swiss cheese", so I really appreciated her interpretation. She said that it would have been great to have a complete response, but we knew that wasn't the case all along. She was glad to see that only two lymph nodes tested positive, stating that the risk of recurrence is much lower when fewer than three lymph nodes test positive. She mentioned two former patients with inflammatory breast cancer, a more serious type of breast cancer, who both had two lymph nodes test positive following neo-adjuvant chemotherapy, and years later, are still cancer-free. She also believes the cancer is affected by estrogen and that hormone therapy will be very effective for me.

I felt so relieved after speaking with her. I have a large list of questions, as she has come to expect, for my next appointment with her on November 21, but for now, I am content just to hear that the pathology results were encouraging to her. So my kick-butt attitude was restored during our second course of dinner that evening, as its vulnerability was also acknowledged.

A New Look

2006-11-08T14:31:00.000-05:00

I am so anxious to hug my boys as they get off the bus. It has only been a day since I last saw them, but we have much to celebrate. The first thing Clay says when he greets me is, "Hey, Mom. Can I see your breasts?" Oh my. "Honey," I respond, "I haven't even seen my breasts yet!" That was remedied the following day when Bo and I went back to the surgeon's office for the bandage removal. I wasn't sure what to expect or how I would react, but when Donna was finally able to peel off the sticky bandages and I caught the first glimpse of my new look, I looked at Bo and said, "Oh. It's not that bad, is it?" He agreed. It wasn't shocking or disturbing or gross or disgusting. It just was.

I have about an eight to ten inch incision on either side, running diagonally from under my arm and down towards the center of my chest. Those are stitched and covered with clear tape. I also have four clear drainage tubes emerging from holes below where my breasts used to be. These are used to drain fluid from the surgery site down into these rubber grenade looking bulbs. I feel like Doc Ock (Spiderman's nemesis) with these 12 inch tubes dangling from my chest. Luckily, my handy dandy surgical camisole has little pouches on either side to hold this equipment.

Before we left the hospital, a nurse's aid had shown us how to clear and empty the drains and had instructed us to do that several times a day, recording the amounts each time. On Friday, Donna, the nurse practicioner, reviewed that procedure with us and also demonstrated how Bo should swab the drain openings with alchohol and antibiotic cream once a day and apply new dressing. This is our newest form of intimacy! Before the surgery, someone from my networking group asked me if Bo would be able to handle dressing the wounds. I responded to him, "This is a man who guts deer. I think he will be okay with it." And he has been. In fact, the doctor ordered home health care service for us, and I declined it because we have been doing fine on our own.

I am scheduled for another visit to the surgeon on Thursday afternoon, and at that time, two of the four drains will be removed. The remaining two will be removed early next week. Luckily the weather is now cool enough for sweaters and sweatshirts, so these "accessories" aren't that conspicuous when stuffed up under my shirts. They are merely a temporary inconvenience.

I showed the boys the results of the surgery, and they seem remarkably unfazed by it all. They were most interested in the huge deep purple bruise down my left side, how it got there, and if it would go away. At one point, Clay asked me if my breasts would grow back, and I explained that the capability of regenerating body parts is exlusive to a small number of creatures, human beings excluded. Ah, to be like a starfish....

Cole asked me if I was going to get new breasts, and I told him I hadn't made that decision yet. (I had mentioned to him months ago that I might get plastic surgery, and he wanted to know if my new breasts would be hard. Plastic surgery is such a misnomer. In fact, Dr. B, the plastic surgeon told me that the latest, state-of-the art implants are called gummy implants as they resemble the consistency of gummy bears.)

People have asked me if I am doing okay emotionally, and the answer is a definitive "yes". I guess the word that best describes how I feel is "relieved." The cancer is gone, and I have eliminated the possibility of ever getting it in the left breast. The probability of a local or distant recurrence is small. I feel lighter, both figurately and literally. Sometimes I wonder if I am in denial and that someday all of this will just suddenly register, but I think not. Life is good.

From a physical standpoint, I feel great, too. I stopped the Oxycontin and Percoset last Friday, as the pain was minimal, and I prefer not to take drugs unless absolutely necessary. I do feel a little tight around my chest area and under my arms, and while I have nearly full range of motion of my arms, if I stretch too far, it hurts a little. Once the drains are removed, I will be able to get physical therapy to help restore strength and flexibility, make the skin supple, and reduce my risk of lymphedema. I have a new appreciation for my body and am anxious to get it into top physically shape and care for my temple!

When I returned from the hospital, I was paradoxically ten pounds heavier than when I went in. I thought I would come home lighter because I would be minus two 34B breasts, but I hadn't counted on being pumped full of i.v. fluids. I couldn't even button my jeans so I had to retrieve a pair of my "big jeans" from my closet. I have been wearing Bo's flannel shirts because they are loose and comfortable and provide easy access to the drains. When I first looked at myself in the mirror fully dressed, I thought, "Whoa, I haven't been this flat since I was ten years old." Combine all that with no makeup and no hair under my headware of choice, the ball cap, I feel like a character from the old Saturday Night Live skit, Pat, whose gender no one could ever determine.

However, I don't think a guy would wear the cute little lady bug earrings I have been sporting since coming out of surgery last Wednesday evening. I had told Bo a story about Clay finding a lady bug at the playground the weekend before my surgery, and how it somehow ended up crawling around the brim of my cap. I took this as a sign of good luck, so Bo went out and bought a pair of lady bug earrings for me before I went into the hospital. I couldn't wear them during surgery, but I put them on right after.

The lady bug earrings needed some reinforcement on the gender identification front, so I decided to experiment with the "puffs" that came with my surgical camisoles to give me a little shape while I await either the prosthetic fitting or reconstruction (or maybe neither...) They are actually more like cushions and give me way more shape than I ever had before. The only problem is that the camisole is weighed down by the grenades, and I find my shape sinking towards my abdomen!

So my new look is evolving, and as the fluid rapidly departs my body and the ball caps gradually depart my wardrobe, what is left as my body returns to physical health is a new attitude, a new inner strength, a new level of confidence, and a new sense of self that has nothing to do with my appearance and everything to do with being a survivor on this life changing journey that is cancer.

I Don't Remember Signing Up for This

2006-11-05T08:28:00.000-05:00

Bo and I arrived at the hospital on Wednesday two hours before my surgery was scheduled, as instructed. Dad and Jeff followed us there. Before exiting the car, I carefully applied "Fire Down Below" on my lips. Bo said that they would probably me take it off (the pre-op brochure instructs you not to wear lotion, makeup, or nail polish) and that I should wait until after the surgery to put it on. I told him the book was not called "Why I Wore Lipstick After My Mastectomy" and proceeded to walk into the hospital, face naked and pale except for the bright beacon of color painted on my lips.

Betty was already in the waiting area, and we managed a quick hug before I was immediately ushered to the pre-op area where I was converted from "civilian" to patient in the 30 seconds it took to remove my clothing (and dignity) and don the infamous hospital gown, opening in the back. A nurse began the process of taking my vital signs, obtaining signatures on required paperwork, inserting the i.v., and explaining the day's events to me.

Since I had already been through the pre-op process for my porta-cath insertion back in May, I was somewhat knowledgeable of the protocol. This was a good thing since I found myself needing to be a more active participant in the process than passive. (Seriously, this had nothing to do with my control freak tendencies. The staff seemed busy or distracted or something. I was really, really nice about it though, of course.) For example: Dr. Hoeffer wanted the i.v. on the arm that was not undergoing lymph node removal (left side), but the nurse was getting ready to insert it on the right side, mistakenly thinking that the total mastectomy occuring on the left side was the more comprehensive procedure. I set her straight - no reason to subject my body to any more assaults than absolutely necessary. Also, for some reason, my paperwork did not include the porta-cath removal, so I had to remind the staff several times to correct this omission, and I was finally given corrected paperwork to initial. (I was not leaving that hospital with that thing in my chest!) Then, as they were getting ready to wheel me out, I pointed out that I hadn't received my Jiffy Pop hat yet. (It is a silver metallic chef looking cap that keeps your head warm during surgery in the chilly operating room.) They had forgotten both the cap and the slippers for my feet.

While I was supervising the pre-op procedures, I was also visiting. I was allowed two visitors in my "suite" at a time. Bo stayed with me the whole time, and Jeff, my Dad, Betty, and Jodie also came in one at a time to wish me well. Jodie brought me a coffee cup containing a big bag of gummy bears. She was afraid I would find the mug too irreverent under the circumstances and almost didn't buy it for me. I am glad she did. When I read it, I burst out laughing. It said "I don't remember signing up for this." The sentiment and the timing were perfect. When she left, I almost tried to sneak out behind her, but the tell-"tail" (pardon the pun) hospital gown distinguished me as a patient and prevented any escape.

Dad came in next, and he was very quiet and solemn. I know how hard this must have been for him - to be forced to relive what he had experienced with my mother 25 years ago. Also, I think when someone undergoes the transformation to patient, it almost seems to diminish the person and make them appear more vulnerable and weak. When you see someone lying on a hospital gurney, in a gown, with an i.v. stuck in hopefully the correct arm, you can't help but experience them a little differently from the night before when they were fully dressed sitting across a table from you engaged in a conversation about say, the latest political scandal... Plus, I am his little girl, and I am sure it has been painful for him to watch me deal with this diagnosis and its attack on mind and body, helpless except to love and support me. Nonetheless, he has been there for me every step of the way, babysitting the boys, spending time with me, listening to me, offering financial support if needed, helping me navigate through this latest challenge in my life, steadfast and unwavering in his role as my Dad and one of my greatest and most constant sources of strength.

Jeff was next, and he hung out for awhile. (Pre-op is an excruciating two hours of waiting for the inevitable.) While he was there, the anesthesiologist, Dr. M came in to introduce himself. The first time I caught a glimpse of him, I thought he must be fresh out of med school, but upon closer inspection, I was relieved to see some gray hair in the sideburns poking out from under his surgical cap. He said that Dr. H had reserved the operating room for three hours and 4o minutes, and that knowing, Dr. H, the surgery would take three hours and 40 minutes. "Dr. H. is very thorough," he explained.

I advised Dr. M that I believe in the power of the subconscious and that even though I would be under anesthesia, my mind would be able to hear what was being said. Therefore, would he please say only positive things during the surgery such as, "You are healthy" and "You are going to feel great when you wake up"? I told him that he could even throw in a couple, "You are beautiful"s, that Bo wouldn't mind, under the circumstances. I also informed him that my hypnotist had suggested I hear the message, "You will wake up feeling a little bit hungry." (She had explained to me that you can't feel hungry and nauseous at the same time.) He was very good natured about my request.

After Jeff departed, Betty came in, but she didn't stay long. She wanted me to have some alone time with Bo before they took me away. She assured me she would be there when I woke up, even if it was midnight.

Dr. H stopped by to see me. One of the pre-op nurses told me that if any of them (the nurses)needed surgery, Dr. H is who they would choose. This was reassuring to hear, although at that point, it would have been a little late to change surgeons. I had the power of the subconscious mind conversation with Dr. H during my last surgery when he "installed" my portha-cath, but I reminded him today and asked him to communicate positive messages during the surgery. He agreed that he would tell me that we had kicked the cancer's butt.

The three nurses who would be assisting in the operating room also came by to introduce themselves, and I advised them of my subconscious mind beliefs. They were all very nice, and one of them even said she absolutely agreed with me. The other two smiled at me kindly.

During the interminable waiting, I went ahead and signed the Living Will and Medical Advance Directive document. I selected Bo as the primary decision-maker but asked him to please get a majority vote before pulling the plug. I have never heard of anyone dying during her mastectomy, but the thought crossed my mind, "What if I don't wake up? I will never see my boys grow up. They will never know how much I loved them. Life will go on without me." These thoughts didn't really consume me, but when the nurses said it was time to go and administered a drug to relax me, I began to cry as Bo kissed me and I was wheeled away.

Evertyhing got fuzzy after that. I remember someone asking me to hoist myself up on the operating room table, and I had to stretch my arms out on these boards on each side of me. Then either the last thing I remember before going under or the first thing I remember when I woke up was feeling someone putting anti-embolism socks on my feet. Time and reality blurred for me then and there.

I woke up up in the recovery room. It was about 6:45 p.m. I asked how long I had been in surgery, and it was just about 3 hours and 40 minutes on the dot. Talk about precise! I stayed in recovery until about 7:30 p.m. The nurse observed that I was in pain, and I agreed with this assessment so she gave me something through the i.v. It flushed the pain right out of my system but only for a couple of minutes, and then the pain moved right on back. It was mostly under my right arm where the lymph nodes had been removed. I asked her if I could have more pain relief medicine, and she said that I could but that I would have to wait another 15 minutes in recovery to make sure I was okay. I was anxious to see everyone so I asked if I could just get something for the pain once I was in my room. She said "yes".

I asked if my family had been notified that I was done, and she said that Dr. H had already been out to talk with them. The nurse said that I could be released to my room as soon as Dr. H finished the notes on my case. I could see Dr. H sitting at a desk talking on the phone. At some point, he began dictating notes. I was trying to hear everything he said, but I was too far away and caught only the occasional word. Finally, he walked over and told me that everything had gone well.

The nurse had already called down to the waiting area, so Bo, Jeff, Betty, and my Dad were waiting outside my room when I was wheeled into the... maternity ward! (How appropriate. After all, I had just delivered... a tumor.) I was so thrilled to see them. I had a big smile on my face, and I waved as I approached them. I felt like I was on cloud nine. I don't know if it was the anesthesia drugs or just the sheer joy of knowing the cancer was out of my body, but I was exuberant.

Betty asked me what brand of lipstick I applied as it was still on my lips. I am sure I was quite a sight with the jiffy pop aluminum cap, bright red lipstick, and my round moon face, swollen and puffy from the i.v. fluids. I was oblivious to all that. I was euphoric! I was just so happy to be alive, happy to be back with my family and friend, happy to have this leg of the journey behind me, and happy to be on a maternity ward without having had gone through childbirth again!

The recovery room nurse advised Charlene, my night shift nurse, of the pain meds that had already been administered to which I responded, "and I am still waiting for something that actually works." (I was really, really nice about it though, of course.) Charlene advised me that I would have to wait until midnight before I could have anything else. Thought bubble: Hmmm.... wonder if they will let me go back to the recovery room for that dose I just passed on....

Tthe doctors and nurses must have honored the request to advise my subconscious that I would wake up feeling hungry because I was in the mood for food (or it could have been the fact I hadn't eaten in nearly 24 hours.) Dr. H hadn't left instructions for my diet, so Charlene called him. He said I could have clear fluids that evening and a regular diet in the morning. She managed to track down one popsicle for me which I promptly devoured. She advised me that if I didn't urinate within six to seven hours, I would need a cathether. I promptly began drinking water, juice, and ginger ale in quanitities sufficient enough to deliver the desired results. Whew! Another indignity averted.

She had also asked Dr. H about meds, and he authorized her to go ahead give me Oxycontin and Percocet. Thank you, Dr. H. I was wired and even with the medication, I couldn't fall asleep. I decided to call my friend, Ann. She had called me earlier in the day, before I had left for the hospital and was very worried about me. (She had been at the hospital when my Mom had her mastectomy, so she was having to relive the past with the next generation too.) I wanted to let her know that I was feeling great. She didn't recognize me at first because my voice was hoarse from the i.v. tube, but she was thrilled to hear from me, and her tears that night were prompted by relief, I hope, and not by worry, as the morning's tears were.

By this time, Bo was snoozing on the couch beside my hospital bed, my new pain meds still hadn't kicked in, and it was too late to call anyone else, so I resorted to the television, which less than a week before election day can be very annoying. The campaign ads were actually making my pain worse. The room was wired for e-mail and internet access, and I considered updating the blog, but the B on my keyboard was stuck, and I couldn't gain entry to the website.

Sometime after midnight, the pain fianlly eased up and I was starting to drift off to sleep when the nightly routine of hourly vital sign readings and other sure-fire slumber prevention techniques were employed. The morning was no better. First there was the shift change at 7:00 a.m. and three new nurses or aids to meet, and Anna, the nurse practicioner came by, once with Dr. H and twice without. Then Donna, the other nurse practicioner came by, breakfast was delivered and retrieved, the home health care advisor came by, followed by the actual home health care rep, and the cleaning lady.

Dr. H offered to let me stay in the hospital another night, and I appreciated this offer, but I decided I would take my chances at home where I only had to contend with three rambuctious boys. (Seriously, how does anyone heal in a hospital between the lack of sleep and the quality of the food??) Dr. H said he wanted to make sure I could keep food down and that I was able to get up and walk around before he would release me. He asked me to stick around until after lunch to see how I was feeling.

Dr. H told me that the surgery went well and that everything looked normal. He said it would be five to seven days before the pathology results would be back and that these results would tell us is if we needed to do radiation. He said that even though he had been advising radiation from the beginning, we would make that decision upon learning the results. I am not sure if he saw something (or didn't see something) that made him reconsider the need for radiation, but Bo said Dr. H had mentioned the same thing to him the night before. I had been planning on radiation, and I really want to do everything I can to ensure the best long-term outcome, so I am fine if radiation is the next step.

I ate lunch and then got up and walked around. I started feeling a little dizzy and nauseated, so I laid back down and was miraculously able to get in 1 and 1/2 hours of uninterrupted nap time. I tried walking around again and felt much better this time. My goal was to get back home to greet Cole and Clay at the bus stop, and we made it just in time. We actually followed the bus into the neighborhood, and I hopped out of the car so I could hug them as they stepped off the bus.

To be continued....

Boob Voyage

2006-11-01T07:33:00.002-05:00

The hospital called yesterday to let me know that my surgery was scheduled for 2:25 p.m. today. I wasn't thrilled with this time for three reasons. First, you can't eat or drink anything after midnight regardless of the time of your surgery. (I don't quite understand why this same rule applies to someone having surgery at 8:00 a.m. and someone having surgery at 2:25 p.m., but it doesn't bother me enough to take on the medical community to have it changed.) Second, it means I get to sit around for most of the day contemplating my fate. Third, I am probably Dr. H's last surgery of the day, so he won't be fresh, but as my friend, Heather, pointed out, I am also not the first surgery of the day when he is getting warmed up.

I had my pre-op visit last Thursday. At this time, Dr. H, and Donna, the nurse practicioner, did a pre-surgical physical. We also talked about the "procedure." I am having a modified radical mastectomy on the right side (the side with the cancer) and a total mastectomy on the left side. The terms are a little misleading as a total mastectomy sounds more extreme to me. Actually, the modified radical mastectomy will result in the removal of the entire breast and will involve an axillary dissection in which two of three levels of lymph nodes are also removed. The total mastectomy is "just" removal of the breast. Dr. H said the surgery will last about 2 1/2 hours.

He also felt compelled to remind me that it wasn't necessary to remove both breasts at this time and that many women wait to see how they do with the first mastectomy. Also, the likelihood of a recurrence is greatest in the first two years and after that time, the risk would not be as high for getting cancer on the left side. I told him I still wanted to proceed with both. Later on that day though, I did briefly revisit this decision in my mind. I still arrived at the same conclusion. From the first moment I learned I had breast cancer, I wanted to have them both removed - that same day actually! I obviously have had time to develop a more rational thought process that is also supported by data as well as intuition.

It is truly hard to know what I would have done, but the fact of the matter is that if I had known what I know now about my risk, the lack of reliable early detection mechanisms for me, and more about the disease itself, I may have opted for prophylactic removal of both breasts. Now I am armed with that information, so why wouldn't I opt for prophylactic removal of the left one? This way I will never face a day when I hear that the lump I just found in my left breast is cancer, and I will never have to wonder why I didn't have the breast removed when I could have it done it on my terms.

I will be in the hospital for one night. If I were having a single mastectomy, there is a good chance the surgery would be outpatient, also known as a drive through mastectomy. Advocacy groups are trying to require insurance companies to provide more comprehensive coverage. I wouldn't want to be in the hospital more than one night, but I am glad that I am not being released today after what I consider pretty major surgery.

I have spent a lot of time in front of the mirror these past few days gazing at my breasts. As a 34B, I always thought they were a bit on the small side, so I enhanced them with padded push up bras. I never flaunted my cleavage, but I realize now that I actually have some pretty decent cleavage going on. Actually, when you consider my petite frame, they are just right. (I think I am experiencing the "You never appreciate what you have until it is gone" syndrome.) Nonetheless, in purely biological terms they have served their utilitarian purpose - attracted a mate and nourished my children. Now they are ornamental and errogenous, and I do have other ornaments and other errogenous zones.

I have lived the last the fews days thinking of "lasts". My 20th year Willam and Mary reunion was this past weekend. As Bo and I were on the dance floor, I told him that he was dancing with my breasts for the last time. On a Busch Gardens rollercoaster last week with the safety bar firmly up against my chest, I couldn't help thinking, "This is the last time I will ride Big Bad Wolf with my breasts." Last night was my last time trick or treating with breasts. You get the drift... Since having breasts is a prerequisite for none of those activities, I believe these thoughts are just part of the mourning process for me.

Instead of sending the kids off to the bus this morning, I dropped them off at school, at their request. Clay wanted me to walk him to his classroom and Cole took off with his friends before I could embarrass him with hugs and kisses and motherly proclamations of love. I have talked to them several times over the last few days about what is happening today. In fact, when I asked the kids last night what I would be coming home without, Clay said "Cancer." Great answer! I was thinking breasts, but leave it to him to get right to heart of the matter and remind me of what is really going on today.

Am I scared? Well, I guess I am a little nervous about having surgery in general and being put under. Also, like most people, I am not really into pain. Otherwise, I am just very anxious to get it over with. I have had five months to think about it. I have had five months of living with the knowledge that there is a tumor in my breast and obsessing about what it is doing in there. When I wake up later on today, I will be cancer free. Bo, my Dad, and Bryan will be able to remove their pink bracelets.

Am I scared? I am reconsidering my answer because Bo just asked me if I had a living will. Now why did he have to go and ask me that? Actually, I was thinking the same thing yesterday, and I do have the paperwork, so I am going to go ahead and sign it this morning. But no, I am still not scared. There are some things out of my control, and I am not going to waste time worrying about them. Besides I know I will be fine and all of my family and friends have been telling me the same thing. We can't all be wrong.

My brother, Jeff, flew into town to assist this week. He, my Dad, and Bo will be at the hospital with me. My friends, Jodie and Betty will also be there. Mama (my mother-in-law) and Laura (my future step-mother) will watch the boys. I hope to be able to talk to Cole, Clay, and Lance from the hospital tonight. I have my bag ready to go, and the lipstick is packed.

I want to thank everyone who is been calling to wish me well and for all of the cards and gifts. I greatly appreciate your thoughts and prayers and your love and concern. You are all very special to me.

It is a spectacular fall day - clear blue skies, mild temperature, beautiful foilage. Jeff, Bo, Lance and I are going to go for a short walk and enjoy this incredible day.

Why I Will Wear Lipstick

2006-10-26T22:23:00.000-05:00

The movie, "Why I Wore Lipstick to My Mastectomy" by Geralyn Lucas was on the Lifetime Channel this past Monday night. For anyone who may have missed it or who didn't know even anything about it, you have another opportunity to see it this Saturday night. The Lifetime channel is rebroadcasting the movie at 9:00 p.m.

I first learned about this book about two months ago when I was out shopping one afternoon. A woman in her early 30s, who recognized my telltale signs of chemo, approached me to share her own personal story of breast cancer. She recommended this book, but I never did pick it up. Then this past Sunday, I learned during my Young Breast Cancer Victors (YBCV) gathering that the book had been turned into a movie and was being aired Monday evening. A couple of people even called me to let me know about it. (Thank you, Ann and Auntie Jo!) My sister-in-law, Julie also mentioned it in her blog comment on Monday.

Jeralyn was only 27 when she was diagnosed with breast cancer. When I think about what a total basket case I was at the age of 27, it makes me really appreciate the courage, emotional capacity, and sense of humor this woman had to deal with her diagnosis at such a young age. Okay, I wasn't a total basket case, but I certainly didn't have the inner strength, maturity, and benefit of life experience I now have, nor did I have the entire, incredible support system that presently surrounds me. I admire all of the very young women who are forced to face a disease that is likely to be more aggressive and serious when it strikes women in their 20s and 30s.

Bo and I watched the movie together, and he enjoyed it as much as I did. There were many moments that elicited tears and just as many that elicited laughter. I could relate to much of what Geralyn experienced such as feeling like a fraud while wearing a wig. There were other things she expressed that I didn't ever encounter such as thinking of herself as damaged goods and fear that her husband would leave her as a result of this imperfection. The whole strip club visit never crossed my mind; although if it had, the closest thing we have to that type of establishment in Williamsburg is the oh so controversial Hooters. I also haven't done the wet t-shirt prance in front of the construction workers, but... hmmm... I still have six days left...

This movie reinforced for me that while many women may share the common experience of breast cancer, we all have our unique responses to it, our own ways of processing through it, and our own paths to healing.

So why will I wear lipstick to my mastectomy? Because Julie told me to. Today when I returned home from my pre-op appointment with Dr. H, there were two packages waiting for me. Julie had sent me a copy of Jeralyn's book. She had also sent me at tube of brilliantly red shade of lipstick called "Fire Down Below" with a note, "Wear lipstick to your mastectomy." I laughed, and I got a little misty eyed too. I loved the message of support, encouragement, and pure spunk that Julie was sending to me through that tube of undeniable, kick ass, red lipstick. So I will wear "Fire Down Below" next Wednesday for me and for all of the other women in this sisterhood of breast cancer. Cancer may take our breasts, it may take our hair, it may even someday take our lives, but it will never steal our spirits or the fire deep within all of us! You go girls!!

I wonder how many women will go to their mastectomies armed with lipstick as a result of Geralyn...

You Won't Find This Camisole at Victoria's Secret

2006-10-23T13:01:00.000-05:00

Well, the surgery date is fast approaching - a week from Wednesday. It doesn't seem to be bothering me that I have only nine more days to spend with my breasts. I am sure if that means I am in acceptance mode or in total denial...

Last week, a woman from Sentara Home Health Care called to discuss the surgical camisoles she had ordered for me and that would be delivered to my hospital room on the day of surgery. She asked if I would be having reconstruction. If not, the camisoles could be worn for four to six weeks until I could be fitted for a prosthesis (or two as the case may be), and she would be available to help me with that process, if necessary. The camisoles even come with "puffs" that can give my figure a little bit of shape in the meantime. She was very kind, but at that moment, the reality started to sink in, and I felt tears begin to well up. Then I reminded myself that the surgery, while making me breast-free would also make me cancer-free, and they were, afterall, just breasts. The moment passed.

Dr. P, my faithful and beloved oncologist called to say she had been in touch with Dr. B, the "boob dude" or as he may prefer to be recognized, the plastic surgeon. Dr. B is not a proponent of what I have dubbed the "saddlebag" flap surgery (the medically correct name is the Ruben flap) and told Dr. P it leaves patients with a lot of pain. So Dr. P said we are back to the following two options:

Option 1: I can have tissue expanders placed at the time of surgery on both the right and left sides. It would take about three months for the tissue to expand to the point where implants can be inserted. This would delay the radiation treatment by several months. Then I would run the risk of damage to the right implant when it is radiated. Dr. B says in his experience, the damage is infrequent and isn't anything he couldn't fix. Both Dr. P and Dr. G (the radiation doctor) do not feel it is a problem to delay radiation. (When I asked Dr. G she said it wouldn't impact the efficacy of the radiation either.) It does make monitoring of the chest wall more difficult, but Dr. P said, when asked, my risk of local recurrence is in the single digits. Nonetheless, Dr. H, my surgeon was quite opposed to this option.

Option 2: I can wait six months until after surgery and then have an implant on the left side. (The left side is not undergoing radiation; therefore, there will be no damage to the tissue and it can be stretched at that time.) An implant will no longer be possible on the right side as the skin will have been radiated and will no longer be e-x-p-a-n-d-a-b-l-e. Dr. B can then do flap surgery using the lattisimus muscle from my back shoulder. This will result in significantly reduced strength on the right side and a large scar down my back.

Now if you are wondering, as I was, why my options are so limited, here's the deal: Most women have either a lumpectomy with radiation and therefore, don't need reconstruction, or they have a mastectomy without radiation so they don't have to worry about radiation damaging the implant (or if they do have a mastectomy with radiation, most women have enough abdominal tissue to do flap surgery.) Because I had lymph node involvement and because of my young age (yes, 41 is still young - especially when dealing with breast cancer), my doctors have advocated the most aggressive treatment plan possible, and I have chosen to follow their recommendations. Back to THE DECISION ( or at least the latest decision).

I have used all techniques at my disposal to make a decision:

I have applied rational thought and extensively considered the pros and cons of each option, listing them in alphabetically order on an 81/2 x 11 sheet of paper.
I have applied emotional thought about how it will feel to be without breasts and to have scars where my breasts once reigned, poised ever so slightly over the rest of terrain.
I have prayed for the solution and listened for a quiet voice to tell me what to do.
I have thrown the question out to the universe and waited for the answer to appear on a billboard or tatooed on my forehead.
I have posed the question to my subconscious before going to bed, hoping to awaken with the response immediately apparent to my conscious mind.

To no avail... nine days out, and I still don't know what to do which I think means that I do know what to do. I am going to wait until after surgery and see how I am. That will pretty much eliminate option 1, but it doesn't make reconstruction in the future an impossibility. Okay, I feel so much better now that I have written that down. Barring any tattooes mysteriously appearing on my forehead, THE DECISION is made. Can you hear the deep sigh of relief I just released?

Now, back to the conversation with Dr. P. When she told me my risk of local recurrence was in the single digits, I asked her what my risk of distant recurrence was. After I asked, I wondered if I could take the question back, and as she took her time responding, I almost told her I didn't want to hear the number. Afterall, I am not a statistic, I am unique, and I already know that I will not have breast cancer again.

Nonetheless, I was pleased to hear the answer she gave after she gazed into her crystal ball (punched some data into a computer program): With a mastectomy only, 40 out of 100 women with my situation (size, lymph node involvement, grade, etc.) will have a recurrence. Once combined with chemo and hormonal treatment, however, only ten out of those 40 will have a recurrence. I felt very comforted by the statistics even while recognizing my own individuality and my unique DNA.

Now that I have made my decision about holding off on reconstruction, and I think about what else to write before I conclude this posting, I can't help but wonder if the universe did speak to me earlier today, or if my prayers were answered through a quiet voice...

Clay awoke last night complaining about his legs, arms, neck, and abdomen hurting. He was running a slight temperature this morning, so I took him to his pediatrician. It turns out the one part of his body that wasn't hurting was the one creating his illness. He has strep throat.

I hadn't seen this Dr. G since my diagnosis, but Bo had told her about me the last time he was there with Lance. At that time she shared with Bo that she had had a double mastectomy. She asked me how I was doing and I brought her up to speed. She had her surgery five years ago and never had reconstruction. She spoke openly her experience, and I appreciated her honesty, candor and genuine concern. She mentioned that the only time the prosthesis is really uncomfortable is in the summer when the weather gets hot and sticky, and then the prosthesis gets hot and sticky. However, there is now a new and improved version that has a fabric lining, and this helps. She recommended Nordstrom's for all my post-mastectomy needs. Most importantly, she shared that for her, breasts aren't her identity, and that her attendance at future graduations, weddings, etc. is what is really important.

And so as I reflect back on this event, I realize I received a subtle sign, this message from a very successful women who is so self-assured, yet comforting, confident, yet calm - our hearts, minds, and souls embody the true strength and spirit of womanhood, not our breasts. Maybe this "sign" isn't as dramatic and blatant as a billboard broadcasting "Don't go with option 1," but it is far more powerful.

I Am Back!

2006-10-13T09:08:00.000-05:00

... from my unintended blog break. It has been over a week since my last confession, I mean update.

No, this last round of chemo did not kick my butt. It has been like all of the others, pretty mild. (Although my fingernails have come pretty close to abandoning their beds. Darn that Gloria for ever mentioning this particularly undesirable side effect. Luckily, while not pretty at the moment, my nails are apparently as resilient as my last three eyelashes, and are staying put. The chemo gods have been merciful.)

And no, I am not recovering from too much celebrating. In fact, I have pretty much given up alchohol, except for the occasional glass of red wine. (I have read studies that women with a history of breast cancer should avoid alcohol.)

And no, chemo brain has not completely drained me of all of my "intellectual" capabilities. While my short term memory is pretty shot, my writing is fairly intact. Did I mention that my writing is fairly intact?

Instead, my temporary departure from blogging is due to an overactive calendar. I have actually been way busier than usual between family, friends, work, volunteer activities, and medical appointments. The stars must have aligned in a certain way for all these activities to converge in the last two weeks, but it is all good stuff!

The day after my last posting, my brother, John came to visit, along with Eric, my two nephews, Kyle, and Daniel, their beloved Nanny, Janine, and a soaking Nor'easter. They visited for five days, except for the Nor'easter which only lasted for two days and but still managed to back up our septic system. With ten people in the house, we had to improvise, which wasn't that difficult when eight of the ten are male! Five of those eight were between the ages of two and eight, so it was a little busy around our house. We did fit in a day at Busch Gardens and a movie, and lots of good meals, of course. John and I played as much Scrabble as we could squeeze in!! It was great to see everyone and saying "good bye" was made a little easier by knowing they are returning to spend Christmas with us.

Then Bo and I took off for a little trip of our own. We just returned from Delray Beach, Florida after a much needed and incredibly enjoyable weekend spent with some of my (and by extension, Bo's) very closest friends. Dad and Laura graciously agreed to move into our house and watch the boys during our absence, so we were able to spend the weekend "sans enfants". (Intellectual diminishment? Ha! Obviously not!) We actually ate our way across South Florida from Boca Raton to West Palm Beach while enjoying the company of the many special people from my former Office Depot days.

Upon our arrival, we were greeted by John and Lori and treated to dinner at a very good Mexican restaurant. (While Bo and I lived down there, we searched fruitlessly for decent Mexican food, and I went about a year with regular salsa fixes!) In addition to being a very good friend, Lori was also one of my first clients. She will soon be leaving corporate America for the exhilerating world of business ownership.

Carrie and Melissa opened their home, hearts, and refrigerator to us, as usual. They had a few new toys for us to enjoy including Carrie's self-confessed mid-life crisis car, a Honda S2000 convertible and a fun little scooter for "cruising" Atlantic Ave. They promised to give us a ride in their restored 1923 Model T Ford when we come visit again. They prepared an awesome dinner followed by a decadent desert of chocolate fondue. I had told Carrie that I have pretty much given up dessert except for fruit but that chocolate is always a good choice. Being the great friend she is, she managed both in one dessert. Also present for that dinner were two other friends, Janet and Elizabeth.

Bo and I also squeezed in lunch at my favorite Italian restaurant on Atlantic Ave. We knew we were back in South Florida by the cars we saw, a Lotus here, a Ferari there, a Bentley over there. Oh yea, that would be Tim's car (my former boss). We got to see Tim, along with another one of my favorite bosses, Tom at happy hour one evening at Boston's on the Beach.

Yes, we were quite full by then, but it was on to Jill and Greg's for brunch and our first ever visit with Dylan, their ten-month old son. He was full of smiles for us, and just thinking about his happy little face planted joy in my heart for the rest of the day.

We tracked down a Yugoslavian family we had met and had befriended while we lived Florida. They invited us over and much to our surprise, served us a delicious dinner of Yugoslavian food. It was so wonderful to catch up with them after several years without contact. They gave me a special gift - a picture and blessing of one of their saints who is known for her powerful intervention for women in need. (Sounds like a good one to have on my side at at time like this - and always. I have embraced the prayers from all faiths and believe they are contributing to my overall emotional and physical health while I heal.)

From there, it was on to Vicki and Shawn's, hostess and host extraordinaires, for a party in our honor and our second dinner of the day - a Mexican taco bar with all the fixin's. In addition to the friends I have already mentioned, Judy and her husband, Ken, and Michelle and her significant other, Brian, were there. (Judy, also a very accommodating friend for food preferences, brought fruit and a decadent chocolate cake for dessert!) The group presented me with a special Brighton breast cancer awareness bracelet and a Louise Hay book on healing. I was really touched by the outpouring of support I continue to receive from all of these friends.

I definitely felt the love that night and the whole weekend. It was just what I needed, and I knew that time with these friends would reinforce me and give me the strength and energy that come from being around people who care about you. (I just didn't think it would give me additional poundage - maybe that abdominal flap surgery will be an option now!) The trip was a great escape for me and Bo, and for much of the weekend, I was able to forget about having cancer and the impending surgery. On the other hand, I was also able to have really good conversations about this journey with Carrie, a recent cancer survivor herself, and that was very helpful and healthy for me too.

We arrived home Monday afternoon. When Lance raced over to me and jumped into my arms as soon as he saw me, and Dad and Laura welcomed us home with hugs, I was instantly reminded that I was now back among another group of people who love me. How beautiful and blessed is my life!

As soon as we got settled in, I headed upstairs to... the treadmill, of course!

10-4, Over and Out

2006-10-05T21:12:00.000-05:00

Yesterday, October 4, was my last chemo. It is over, and I am out of there! (Out of the drip salon, anyway. My next visit to the office will be a post-surgical appointment with Dr. P in November.) I marked the occasion by baking a coffee cake for the staff and thanking them for the compassionate and competent care I received during my chemo. I won't miss my weekly visits to the office for labwork, shots, or chemo, but I will miss the people, both the staff and other patients.

When I first began chemo, I was put in a private room. Gloria, the oncology nurse told me she wanted to make sure I could behave on my own before putting me in a room with others. Well, I guess it took seven visits to convince her I could play nicely. My last visit today was in a group room. One of the woman I run into frequently was also getting her treatment. She is bravely battling a recurrence. I also met a new patient, Margeaux, who was on her second visit. She still had a full head of hair, so we discussed the merits of hats versus wigs. Bo patiently read the latest issue of one of his deer hunting magazines while we women shared our stories and compared notes.

I was saddened to hear that one of the patients I bumped into frequently, Paula, passed away today from a rare form of ovarian cancer. When I saw her just two weeks ago, she told me that she was going into palliative care. I brought a card in for her today and was going to ask the staff to address it and mail it for me. I was too late....

I had an appointment with Dr. P while I was there. She is still very confident that the tumor has responded to the point that what is left feels like fibrocystic disease, but time will tell. She said that it will take probably take a couple of weeks following the surgery to get the results back and that is when our next appointment will be scheduled.

I asked Dr. P how long before all traces of the chemo are out of my body. She said it takes about six weeks for most of the residual effects to go away. In three months, it should be a distant memory, and in six months, I am back to "normal". I am already seeing the results of the milder form of chemo, Taxotere. My peach fuzz is evolving into a dark fringe. I have heard all kinds of stories about how the hair comes back in differently following chemo. The good news is that it is not coming in blonde. I know from the experience with the blonde wig that looked far better on Bo than me that I do not have the coloring to be blond. It made me look green actually. I also have three new eyelashes coming in to join the valiant four that never deserted me.

While the hair is returning, however, my brain capacity seems to have been diminishing. I have been experiencing chemo brain a lot lately. My memory is the pits, and I sometimes have difficulty gathering my thoughts and communicating coherently. I am confident the fog will lift, but it is good to know I can use the chemo brain excuse for a few more months. It is such a relief to know that with this treatment, I will be experiencing the side effects of chemo for the very last time. You know, I have welcomed the chemo into my body and have never considered it to be anything other than strong medicine on a targeted mission to destroy the cancer, and I can't help but wonder if that helped me tolerate the chemo as well as I did...

Dr. P and I also discussed reconstructions options. She mentioned a patient who is going to New Orleans for flap surgery that uses tissue from the saddlebag area. (She used the correct anatomical terminology, but I don't recall it and you get the picture anyway.) Now that would kill two birds with one stone. She tried to call Dr. B while I was there to see if this may be an option for me, but he was out of the office today. I really appreciate her willingness to help me track down answers for all of my questions. From the very beginning, she has always given me her full attention and a generous allotment of her time. I believe the relationship with your doctors is critical to the healing process, and I know Dr. P has contributed to mine.

After the visit and chemo, I almost danced out of the office. I was on cloud nine in a way that I haven't felt since this whole experience began back in May. Bo and I took the kids out for dinner to celebrate this milestone in my treatment plan. Life is good.

November 1 - The Final Demise of the Cancer

2006-10-03T21:10:00.000-05:00

I had an appointment with Dr. H's office last Thursday, and we were able to schedule my surgery for Wednesday, November 1 which is exactly four weeks from my last chemo treatment on October 4. - two dates worth celebrating!

I saw Anna, the nurse practicioner first, and she seemed very encouraged after feeling the tumor. She announced that I have definitely had a response. It is still obviously there, but it feels different and smaller, and she too, said that it is hard to determine what may be dead tissue or inflammation and what may still be viable tumor. I envision it to be all dead. I told her that it has been hurting near the site of the tumor and under my right arm and asked her what that meant. She said that she didn't know but said the dying tissue may be causing the pain. Good. That is what I have been telling myself.

One reason for neo-adjuvant chemotherapy (chemo before surgery) is for prognostic purposes. Women who experience a partial or complete response, are more likely to have a better long-term outcome. A complete response (when the tumor becomes undetectable) is better than a partial response, but any response is a good thing. As Anna pointed out, if the chemo is reducing the size of a fairly large tumor, imagine what it is doing to any microscopic cells that may have settled elsewhere in my body. "Besides", she said, "You will have a CR (complete response) on November 1."

Then Dr. H arrived. He also did a physical exam. He very solemnly said that he recommended a mastectomy due to the size of the original tumor (large) and the size of my breast (small.) His rationale for that recommendation was communicated in a slightly more professional and technical manner, but I just condensed it down to the basics. I told him that he didn't have to try to talk me into a mastectomy because that had been my position from the moment I learned I had cancer. "In fact," I announced, "I want both removed."

Upon hearing this news, he exchanged glances with Anna, and actually pulled her in for reinforcement. "Well, Anna will tell you that the women we see who have bilateral mastectomies have a very difficult time." I asked, "Physically or emotionally?" The response from Dr. H was "Both."

I thought about that for a couple of seconds and then said, "Personally, I think I will do better emotionally if both are removed. Obviously early detection doesn't work really work very well for me." Dr. H said that we would use MRIs to monitor the left side. Hmmm... I tried to envision my future under this proposal, and what I saw were deafening semi-annual dates with the big claustrophobic-inducing metal tube. That isn't even the bad part. What I would really mind is having to return to the biopsy table for the inevitable false positives (or not) and the agony of waiting. Talk about emotionally difficult! I reminded him of the recent study that concluded that 40% of breast cancer patients with a family history of breast cancer develop cancer in the other breast. He said he thought that number was a little high.

I told him if I have both removed I never have to worry about back trouble as a result of being unbalanced. Anna appreciated my positive take on the matter, but Dr. H didn't seem amused. Regardless, I know what I want. I mean, think about it. What good is one going to do me anyway? It is not like I can wear low cut, revealing clothing after the right one is removed (not that I ever did.) My days of nursing infants are over. And Bo is a self-professed derriere man. Leaving one gains me nothing, but having a bilateral mastectomy delivers some peace of mind. I cannot eliminate the possibility of a distant metastatic recurrence in my future, but I can eliminate the possibility of ever developing the same or different type of breast cancer in the unaffected breast by removing it. As far as I am concerned, it's a no-brainer.

I was actually surprised that I wanted a more aggressive approach than he did, but I think his position was to hold off on putting myself through a double mastectomy until we have a pretty good idea that the cancer has not mestasticized elsewhere in my body. Generally, the risk for that is highest in the first 18 months following the initial cancer. How utterly depressing - I just don't think that way.

I received an equally uplifting response when I asked him if he could remove the portacath (used for administration of the chemo) out of my chest at the same time he performed my surgery. He said he could but said that some patients liked to keep it in for awhile in case they needed it again. I looked straight into his eyes and told him that I wasn't going to need it again - ever.

From there, I moved onto the topic of reconstruction, and the conversation didn't get any better. This whole reconstruction thing is still kind of confusing to me, but I will try to explain. I had met with Dr. B, the plastic surgeon, a week earlier. Sure enough, I don't have enough abdominal tissue to do the flap surgery (which uses abdominal muscle, fat, and skin to replace the breast). That seemed to leave implants as my only viable option, but implants require tissue expanders at the time of the mastectomy. This enables the skin to stretch enough for the implants to be inserted later. Since radiated skin won't expand, Dr. B said I would need to postpone radiation for four months until the skin is sufficiently stretched and the implants are ... well, implanted. Dr. B actually discussed this option with Dr. G, the radiologist and Dr. P, my oncologist, and both of them felt the delay wouldn't have any effects on my longterm health. I relayed all of this to Dr. H who said that was an unacceptable option because the radiation damages the implants.

He also did a physical exam and asked me if I had been experiencing any back pain or headaches (signs of mestastacized cancer, I assume), and I said "no." (Reflecting on that question later in the context of the whole visit, my masochistic mind started wondering why he asked that question. Did he know something I didn't? Are there other signs it may have spread? I told my overactive imagination to get a grip, and then I just reminded myself again as I often do that the odds are in my favor for beating this cancer and never having a recurrence. It would be nice to hear him say that though.)

So other than finally getting a date on the calendar for surgery (which my still very structured, anal-retentive self had been long awaiting so I could plan my life accordingly), I left his office feeling incredibly deflated about the entire visit. (I am getting depressed all over again just writing about it!) Even Bo said that he didn't have a very good feeling about things after the visit, so when we left, we went and ate - lunch. Food - the universal anti-depressant! There isn't much a good dose of salsa won't help.

When I returned home, I called Dr. B and told him about the conversation with Dr. H. Dr. B said, "Well, I told you that it wasn't an ideal option, but it's about the only one we have. It is true that radiation damages implants about 50% of the time, but that means 50% of the time, it doesn't damage them. It can be fixed. Of course, there is a more complex form of flap surgery that you may be a candidate for, but no one in the area performs it, so you would need to be referred out for it." He offered to call Dr. H and discuss my situation with him, and I accepted his offer, but I haven't heard back from Dr. B yet.

While I had been on the fence about reconstruction, I was actually leaning towards it after my initial consultation with Dr. B. I got especially excited when I asked him if I could pick the size and he said, "Yes." Then he paused and said, "Well, with some limitations of course, but I could give you a pretty good C cup." I am going to do a little more research before ruling out reconstruction, but I think I will be okay if that popular schoolyard expression "Flat as a board" is used to describe me, as long as it is accompanied by the adjective "HEALTHY".

A Wider Audience

2006-10-01T20:22:00.000-05:00

Ever since being diagnosed with cancer, I have tried to make draw meaning from the experience, to learn and grow from it, and to find ways to help others as a result of it. (I believe this one one of the good "symptons" of cancer and many people develop it. For instance, Art, one of the frequent contributors to the comment section of my blog, now runs marathons to raise money for the Leukemia and Lymphona Society following his own experience with lymphoma. This weekend, I had the pleasure of meeting The Good Health Fairy, a women who had breast cancer several years ago and now visits breast cancer patients through the Reach for Recovery Progam. So much of the fundraising, awareness, legislation, resources, support groups, organizations, etc. for cancer, are due to patients and former patients becoming activists.)

I have been searching for my own way to contribute to the cause and have decided that building awareness of the disease and how women need to be advocates for their own health is a good start. Last Monday, I sent an e-mail to the editor of a new, local weekly newspaper and told her a little bit about myself. I offered to assist her with any efforts she may have had planned to cover National Breast Cancer Awareness Month in October. She e-mailed me back and asked if I could meet with her the next day. She told me that she had actually been "googling" over the weekend to find out what was significant in October and discovered that is was National Breast Cancer Awareness Month. She was in need of a story for the next edition of the paper and knew she wanted to cover that topic. I don't believe in coincidences anymore. The universe conspired to bring us together, and the results of that conspiracy are available at http://www.toano-norgetimes.com/too_much_pink.htm I am grateful to Rosemary for giving me the opportunity to tell my story and for helping me in my quest to help others in any way I can.

Too Much Pink

2006-09-25T09:52:00.000-05:00

I was going to write about my visit to the plastic surgeon last Wednesday, but that can wait. Two things happened last week that prompted me to write the following instead:

I am aware of it now, more than ever. I see pink everywhere I go. Pink ribbons printed on Virginia license plates, pink metallic ribbons affixed to cars, pink plastic bracelets, pink ribbon jewelry, pink ribbon decorative flags in yards, etc. Every time I see pink, it represents someone who has fought/is fighting breast cancer or someone who knows and supports someone who has fought/is fighting breast cancer. There is too much pink.

When I first started writing this blog, I tried to mention the people I encountered who either personally experienced breast cancer or knew someone who had. One of Bo's customers had it. Another customer lost a sister to the disease. My friend's sister-in-law is battling it. Another friend's neighbor is battling it. My cousin's colleague is battling it. My colleague's wife had it. Two former colleagues from Social Services had it. A teacher from my sons' school had it last year. A young woman, apparently noticing my absence of hair under my now signature ball cap, approached me while I was shopping one afternoon to share her story of breast cancer and to offer her prayers for me. I gave up trying to include all these and the many more references in the blog. There is too much pink.

Last Tuesday, I called my buddy Max, the classmate from The Entrepreneur Source who arranged for the caps with my initials in pink to be passed out to our academy class back in June. I was calling to check in and to ask his guidance with a client. He sounded pleased to hear from me and we spoke briefly about business. He said things have slowed down for him lately and then proceeded to tell me that his wife had just been diagnosed with breast cancer. There is too much pink.

On Friday, I had a touching encounter at Pizza Hut, of all places, and I submitted the story to our local paper which has a very popular feature called "The Last Word." Readers are invited to (anonymously) share their thoughts on any topic. It is quite entertaining and offers interesting insights into others' perspectives on living in the "burg" and life in general. Below is my submission:

"My friend and I were enjoying lunch at Pizza Hut with our three year old sons when one of the waitresses walked over and said, “Someone wants to buy your lunch,” and she pointed out a man who was dining alone. My first reaction was to say that we appreciated the offer but that it wasn’t necessary, and she relayed this message to him. I reconsidered and went over to speak to him. I explained that I have a hard time letting people do nice things for me but that if he wanted to buy us lunch, we would really appreciate it. He said he wanted to do something to help me with “the fight.” (I was wearing a baseball cap with nothing underneath, and he assumed, correctly, that I was undergoing chemotherapy.) He asked about the two boys at the table and said that his grandchildren kept his wife going during her five year fight with breast cancer. He said he was still getting over her loss. I hugged him tight and told him I would keep him in my prayers. He bought our lunch. We were two strangers brought together for a brief, but profound moment by a common thread – breast cancer. He got into a pickup truck without a front license plate (indicating he is not from Virginia), so I don’t think he will ever read this, but I wanted to share the story. Life is full of opportunities to connect with others in simple, brief, but meaningful ways. I thank that gentleman for reaching out and touching my life." There is too much pink.

The American Cancer Society reports that over 200,000 women will be diagnosed with breast cancer this year in this country. That means that every three minutes, a woman will hear the life-altering words, "You have breast cancer." Over 40,000 women will die this year die from breast cancer. While I have seen various statistics, most frequently cited is that one in nine women will have breast cancer during their lifetime. There is too much pink.

The month of October signifies the arrival of fall and it's traditional palette of reds, yellows, and oranges, but since October is also National Breast Cancer Awareness month, we can expect to see a lot of pink too. The fact that pink represents awareness is a positive thing. There will be a flood of information coming from a multitude of sources, and we will also see many products marketed where proceeds of the sales will benefit breast cancer organizations. The effort is certainly there to wipe out this disease, but until a cure is found, early detection is key. If I could ask you to do just one thing, it would be: Women, please perform your monthly breast exam and schedule regular mammograms. Women and men, please encourage the women you know to take those actions. And iff a woman has a family history, she should consult with an oncologist and a genetic counselor. Let's make pink nothing more than a pretty color!

Mirror, Mirror on the Wall

2006-09-19T20:55:00.000-05:00

When I spoke with Dr. P last week, I mentioned that I was anxious to see a dermatologist due to my fair skin and a history of blistering sunburns from when I was child hanging out at the neighborhood pool all day, every day during the summers. It hasn't been that long ago, but I don't believe they made sunscreen back in the 70s. I have vague memories of the Coppertone billboard with a dog pulling down the back of a little girl's bikini, but I seriously doubt that product was a broad spectrum, high SPF sunblock like what is available today, if it even was any type of sunscreen at all. There certainly wasn't the awareness of the dangers of sun exposure, and now we have the whole ozone depletion thing contributing to the problem too...

When I was a teenager, I remember broiling under the sun during its most intense hours, baby oil glistening on my pale skin. When I turned 19 or 20, I finally realized that no matter how extreme my attempts to obtain a bronzed skin tone, I would never exceed ivory. Since then, I have tried to be careful in limiting sun exposure. Nonetheless, I am a greater risk than the general population due to my history and fair skin.

I had actually brought this concern up a couple of months ago when I first began seeing Dr. P, and she suggested we wait until I got through the breast cancer treatment. "Yes," I had agreed at that time, "Let's deal with one cancer at a time." I am not becoming a hypochondriac, I just want to take the appropriate actions to safeguard my health. As you can imagine, early detection is very important to me these days.

Last week, I showed her a little spot on my upper lip that wasn't healing. She said it was most likely a solar keratosis, and she went ahead set up an appointment for me with a dermatologist. I went to the dermatologist on Monday, and sure enough, the spot on my lip was an actinic keratosis. The dermatologist froze it off because left untreated, it could have turned into squamous cell carcinoma. He did check the rest of my body, and I told him to take a really good look at my scalp while he could because it would soon be covered with hair again - permanently. He found no suspicious areas there or anyhere else on my body. He asked, out of curiousity I guess, if the loose skin on my abdomen was due to weight loss as a result of the cancer. "No," I said. "That would be due to three babies." Other than that forgiveable faux pas, I liked him and will add him to my stable of doctors. I need to return in three weeks for a follow up.

Over the last few months, I have had lots of practice at reducing whatever tendencies I have had towards vanity. Today, I attended a networking luncheon with a group of women I had never met before. Not only did I show up obviously bald under my hat, I was also sporting a huge blister on my upper lip (the former site of the actinic keratosis). You know what? I am actually beyond self-conscious now, and I mostly forget that I look different on the outside than I used to. I just act the same way I always have towards people, and in return, I get the same response I always have. It has been a tremendous learning and growth opportunity for me and is very freeing. That being said, I will be very happy when I return to my former look. I said I was reducing my tendencies towards vanity, not eliminating!

Seven Down, One to Go

2006-09-14T20:42:00.000-05:00

Yesterday was my seventh chemo treatment. You can't imagine how good it feels to know I only have to undergo one more treatment. Even though the effects have been minimal, I am anxious to drop this routine from my everyday life, to have the toxic chemicals out of my body for good, and to be able to move on to the next stage.

I didn't sleep very well on Tuesday night, and it finally dawned on me that I develop insomnia around the time of the chemo sessions. I wake up at 3:00 a.m. and am unable to go back to sleep usually until dawn, and by then it is time to get up. I know I can be a little slow to connect the dots at times, but I still can't believe it took seven sessions for me to figure it out. The only constant has been one of the anti-nausea drugs, a steroid. (That's what I get for not reading the pamphlets describing the side effects!) Both Gloria and Dr. P confirmed it was the "roids" causing the insomnia, and Dr. P said it was okay if I didn't take the drug anymore.

I had an appointment with Dr. P during this chemo session. As usual, she spent quite a bit of time talking with me and Bo. She said she supported my decision to have a double mastectomy, especially in light of my family history. Even though I don't have the known genetic marker, I am still at increased risk for it coming back in the "contra-lateral" breast. She said a double mastectomy would eliminate the need to monitor the remaining breast through mammograms and ultrasounds. Amen to that; although, I will miss my new friends at the Women's Imaging Center.

She asked me what I planned to do regarding reconstruction, and I told her that I hadn't made a decision yet. She thought my options were limited due to my size. I guess there are generally two options: implants or using abdominal tissue. She observed that I don't have any extra abdominal tissue. I told her I could eat more to increase the abdominal tissue. (I have also had several offers from friends since to use their spare tissue!) She offered to set up a consultation with a plastic surgeon so I could at least get some information. She provided the name of one surgeon who she said "makes the best breasts in Williamsburg." If that is not a glowing endorsement, I don't know what is! I have an appointment scheduled with this awesome breast creator next Wednesday.

I told her that I wasn't necessarily considering reconstruction from a vanity standpoint. As I have said before, breasts have never been a huge part of my identity because mine just aren't that noticeable to begin with, and they are not one of the physical attributes I have chosen to play up. It is just that if I don't have the reconstruction surgery, I am not sure that I can stand to look at the scars in the mirror every day. I remember my Mom's scars, and they were so disfiguring.

Dr. P said that it is easier to monitor the chest wall for a recurrence if I don't have reconstruction. Wait just one minute. You mean to say that even after I remove the breast tissue, the breast cancer can still return locally? Dr. P's answer was that yes, it could return to the chest wall, and that is one of the reasons that I will receive radiation, to reduce the likelihood of any cancer cells remaining after the surgery. So, I guess I really do need to get more information on the pros and cons of reconstruction and evaluate the risks accordingly.

I asked her once I have completed all of the steps of my treatment plan, what happens next? She said that I will be put on Tamoxifen to reduce the risk of recurrence. Breast cancer is only curable the first time you get it, so you definitely do not want it to come back. I will also be monitored regularly, the extent of that monitoring to be discussed when the time comes. It is kind of weird to think I have one chance to beat this thing, but in reality, that doesn't put me any closer to mortality than anyone else. It is just puts the concept of mortality more in my face and a part of my consciousness than it is for most people.

Her guidance from the very beginning has been to treat the cancer as aggressively as possible, and then to live my life. She's right. The rest is out of my control, and I don't want to spend the rest of my life, however long that may be, worrying that it may come back. In fact, I intend to spend the rest of my life affirming that I am healthy and that is isn't ever coming back. I intend to live the rest of my life with a greater appreciation of life than if I hadn't experienced cancer. There are too many valuable lessons, too many positive experiences and outcomes to be gained from this journey for me to ever go back to the way life was before cancer. (If I even could... I wonder if anyone can do that...) I want to use the experience to continue creating positive change as my life moves forward. Okay, time to get off the soap box.

After answering all of my questions, Dr. P conducted a physical exam and said that the tumor was 1,000 times better than when I originally "presented". She believes it is smaller than the last time she felt it too, and if she didn't know differently, she would think that I just had fibrocystic changes going on in the breast. (I have been not been able to detect a change lately and was actually imagining it feeling bigger. That's why I will be so happy to have this thing removed once and for all so I can stop obsessing over it once and for all!)

She also said that it is quite possible that some of what we are feeling is fibrous tissue (I think is what she called it) that may now be surrounding the tumor, so the tumor may even be much smaller than what we are feeling. She said she couldn't wait to see the "path" report on it following surgery. Me too! She wasn't even able to find the one swollen lymph node under my arm that she originally described as the size of a lima bean, and then as the size of a pencil eraser, and now I guess, is so small it defies detection and description. She also said that my breezing through the chemo in is probably a good sign that the cancer has not spread undetected to other parts of my body.

I asked her if she felt that we had really pursued the best course of action by delaying the surgery and continuing the chemo, since at one point, she had been so adamant about having the surgery. (Not that we could go back and change anything now, but I wanted to know her honest opinion, and she respected my need to process through all of this stuff.) She said that once she saw a reaction to the chemo, she felt very comfortable continuing the chemo and is glad that I did get the Taxotere up front. Her affirmation was what I had been looking for and what I needed to hear.

All in all, it was a very positive and encouraging appointment, (other than the unpleasant recurrence part of the conversation) and I walked out feeling better than when I had walked in. I went back to the office this afternoon for my $7,000 shot. I can feel my white blood cells increasing as I write this. Since the "roids" should be out of my system by now, I am looking forward to a insomnia-free night.

Peach Fuzz

2006-09-11T20:42:00.000-05:00

We survived the first week of school. All of the boys did really well, and we didn't have any adjustment issues with any of them this year. It was actually a very short week since Labor Day was Monday, Tuesday was half a day, and school was cancelled on Friday. It turns out that a water main burst in James City County on Wednesday. (The problem was attributed to Ernesto.) The general public was notified Thursday afternoon, and at that time, a boiled water advisory was put into effect for the entire county. The schools were closed on Friday as a precaution. By Saturday afternoon, the boiled water advisory was lifted, and things were back to normal. It is kind of funny that they were trying to protect us from something to which we had already been exposed for 24 hours, but it appears that there were no problems as a result of the main break.

Bo Update:

Bo went to the urologist today, and Dr. V ruled out testicular cancer, so that is a very good thing. He confirmed that Bo has some type of hormonal imbalance and that the imbalance is probably causing the lump in his breast. Dr. V ordered an additional blood test, and he is trying to determine if Bo needs to see another specialist - this time, a neurologist. At least we know it is nothing serious, and luckily it isn't causing Bo any real pain or discomfort. Nonetheless, I know Bo will be relieved when/if they figure it out.

Lance Update:

We have been keeping an eye on Lance's lymph nodes, and they definitely seem to be diminishing in size. We are going to wait another week or so before deciding whether or not to bring him back to the doctor, but at this point, I really believe that he is fine.

MB Update:

I was brushing my teeth a couple of nights ago when I happened to notice something growing on my head. It looks and feels just like peach fuzz, but it is beginning of the end of my hairless period. Bo wants to use his clippers to cut the few remaining longer strands closer to the scalp so everything will be the same length. He doesn't understand why I left those few strands after everything else fell out. I explained to him that they were the survivors, and if they could withstand some of the most toxic chemicals available for medical treatment, I wasn't about to cut them off! I am okay with trimming them now that they will be back among friends.

I never completely lost all of my eyebrows, but they thinned significantly, and were a little uneven and patchy. I had very full eyebrows to begin with, and one of my friends said she thought I had just had them waxed. (By a legally blind cosmetoligist???) I can now see right below the skin where the new eyebrow hairs are about to emerge though.

Things are looking up - on the vanity front anyway. Now, when we can just get the chemo behind me and this tumor removed once and for all, then what a happy day it will be!

So, if I know Jeff well enough by now, I sense a new band name - perhaps the Legally Blind Eyebrows...

Visits from Family, Friends, and Depressions

2006-09-06T20:33:00.000-05:00

I like to update the blog a couple of times a week, but for a variety of reasons, I have had to put the blog on the back burner, and I have had to force myself not to feel stressed out about putting the blog on the back burner. Afterall, the blog is part of my healing process, and stress is not allowed in that process. Removing stress from my life has been a huge challenge (second only to losing my hair), and while I believe it is impossible to remove all stress from our lives, this Type A, control freak, perpetually seeking challenges woman has done a pretty darn good job of that - most of the time.

The last week of August, my Uncle Frank and Auntie Lenny came to Virginia to visit my Dad and Laura and to spend time with us. It was great to see them, and we had a number of opportunities to get together while they were here. They headed back up to Massachusetts on Thursday, in time to miss Ernesto's arrival on Friday.

By the time Ernesto visited Williamsburg, it had been downgraded to a tropical depression, but it still packed a powerful punch. We received about ten inches of rain, and the wind blew down many trees. At one point, 40,000 of the 45,000 local residents lost power, but fortunately we were one of the 5,000 that had power, and we never lost it. We had several limbs down in our yard, and the front passenger side of my Taurus was quite waterlogged, but that was the worst of the damage for us. Unfortunately, Bo's Mom and Richard lost their boat when the storm surge caused it to sink beside their pier. We are all hoping that is the worst of the hurricane season for us this year, but Florence is brewing out there now...

Ernesto left in time for our very good friends, Heather and Rob, and their eight month old son, Mattie, to come up from Charlotte to visit us for the Labor Day weekend. Their son is beautiful, just like them. I had forgotten how much work an infant is though!

They left on Monday, and another depression came to visit. This one too packed a powerful punch, but I was about the only one who felt it, with a few exceptions. I can't really attribute the depression to any one thing. I think it was just a combination of things that built up to a point that I needed to release some pressure in the form of tears. Although the chemo has had minimal effects on me, I am sure whether I acknowledge it or not, the toxicity is taking its toll on my body physically and emotionally. Also, the demands of trying to launch a brand new business and the accompanying financial pressure of supporting a family of five are hard to ignore. Additionally, I feel like I haven't been able to stay on top of things around the house. And, after a long weekend, I was dreading going back to work to a business that is still so uncomfortable for me. I think I was also mourning the passing of summer as the kids prepared for school on Tuesday. (You would think this is one summer I would be so glad to have behind me!) It could have also been hormones, but since I don't have periods now, just hot flashes, I don't know. Oh yes, then there is the whole I have breast cancer thing, too. I could keep listing contributing factors, but if I do that, I will get depressed all over again.

My brother, Jeff, called to check in Monday afternoon, and he just happened to be the one present when the depression struck, and the tears spewed forth. This was a fortunate thing because anyone else probably would have been crying with me. I was pretty pathetic. Not Jeff, though. He is way too rational for that. That's not saying he is cold-hearted - quite the contrary, in fact. He is very compassionate, generous, and loving, but he just has a very logical approach to working through crises, including mine. (He is also very creative at generating names for rock bands.) He let me cry and walked me through the storm by helping me figure out what would help relieve some of the anxiety.

I felt much better after talking to Jeff, and I didn't cry again for a couple hours. Then the storm struck again. This time, Bo experienced the effects. We talked about ways he could help take some of the pressure off of me, and of course, he wants nothing more than to support and help me. I recognize that some of the pressure is self-imposed and that I must give up my need to control everything. I am a work in progress, as we all are, but I am extremely motivated to progress to a state of good health and remain there.

The depression passed fairly quickly with occassional squalls on Tuesday, but today, I am feeling much better. I have way more things to be happy about than to be sad about, and I choose to focus on the happy. That being said, I am human. I don't have to be Superwoman. I know I am entitled to feel crappy, and when I do, I just need to go with it, knowing that it is okay to feel yucky, and that it will pass, just like Ernesto.

P.S. I was kidding about the hair - kind of.

I am a Taurus, and You?

2006-08-30T18:54:00.000-05:00

I had another ultrasound today. Dr. P is using the ultrasounds as a way a gauging the effectiveness of the chemo in reducing the size of the tumor. Today's results showed no change in size since the last ultrasound three weeks ago. This actually surprised me a little bit because I can definitely tell a difference, and my intuition is telling me the cancer is dead. It is harder to feel a solid mass now than it did several weeks ago. Delores, the ultrasound tech today, and the one who has been with me since this saga began on May 15, did confirm that the tumor is less defined now and that some of the tissue may be necrotic. It is impossible to tell without another biopsy, and at this point, they will just wait until the surgery to biopsy the tissue. I did not walk out discouraged. Again, the good news is that the tumor is not increasing in size. Also, it did take a couple months for the Adriomycin/Cytoxin to kick in, so it may take a couple of months for the Taxotere to work its magic as well.

I headed over to Dr. P's office for my weekly needle jab, I mean, lab work. You know how I feel about the $7,000 Neulasta shot, but man, does that stuff work! The house is still a mess, and we had to take the car to the dealership to get the oil changed, but my white blood count was fully restored. I asked to speak to Gloria. I start to miss her twisted sense of humor if I don't see her at least once a week. I shared the results of the ultrasound with her and asked her to please let Dr. P know that I wasn't concerned, as I can tell the tumor is changing/responding. If Dr. P was concerned, however, I asked that I be notified that mine was a false sense of security and that I needed to adjust accordingly. She agreed to tell Dr. P and to have Dr. P call me in the event that the results needed to be discussed in any detail. I didn't hear from Dr. P today.

Bo, after waiting over a week, finally has an appointment scheduled with the urologist on September 11. Although Dr. S wanted Bo to have an ultrasound, the urologist wants to examine Bo first to determine if Bo actually needs an ultrasound or not...

We had Lance at the doctor's office yesterday. He has a prominent swollen lymph node in his neck. It has been swollen for months, and when we had him checked out last week during his three year old check up, Dr. G said it wasn't anything to be concerned about. (Yes, I know he turned three over two months ago, but the corresponding annual exam slipped our minds at the time.) Well, this past weekend, we found another lump behind his ear. Anyway, I am not a worrier by nature, even with my kids, but I have always insisted on having lumps checked out.

This time we saw Dr. A, a new addition to the group of pediatricians we use. She checked out the lump behind Lance's ear and said it was also a swollen lymph node. (I didn't even know we had lymph nodes back there.) She also found swollen lymph nodes in his groin area. She said he appears to be fighting some type of infection as the nodes feel reactively swollen. She said if it would make me feel better, she could order blood work. I asked what she would be testing for with the blood work, and she emitted medical jargon for the next 2o seconds. Once she reverted to English again, she recommended that we wait a week or two and if the lymph nodes didn't shrink that we do the blood work at that time. If I would sleep better though, she was happy to order the blood work but she had interned in hemo/onc and she really didn't think it was leukemia. Whoa - who said anything about leukemia? That thought had never crossed my mind until she mentioned it, and now that she had, maybe sleep would be elusive...

Actually, I honestly believe Lance may just be a lumpy kid. My motherly intuition is telling me that nothing is wrong with him, and I am comfortable waiting a week or two. I wondered, however, about my husband, aka, Mr. Worrier, (and I say that with complete affection - one of us has to worry about things or our relationship wouldn't work as well as it does). I made an executive decision that he wouldn't mind waiting a week either - especiallly if he didn't know about it! Then I promptly went out to where he was waiting in the van with Cole and Clay and told him what the doctor had said. (Communication - another component of a healthy relationship.) The information caused Bo a few moments of anxiety, but I think he knows intuitively that Lance is fine too. It's just that now we have added yet one more family member to the medical limbo club. Hopefully Lance's membership, and Bo's as well, will be short in duration, and I will once again have the distinction of exclusive membership.

I really liked Dr. A, but she appeared young, and I got the impression she had just been released from the halls of academia to practice medicine. One clue: After a few minutes of discussing Lance she casually asked me, "What's your malignancy?" She said this in the same way you might ask, "So, what's your sign?" Maybe that's how they talk in hemo/onc. I wasn't offended. It takes a lot to offend me, and besides I know she was just curious. I can honestly say I have never been asked that question before, and I doubt I will be asked again - especially once my hair returns to its rightful places!

Bo's Update and More About Me, Too

2006-08-24T21:06:00.000-05:00

Bo went to his doctor on Tuesday to discuss the results of his blood tests. All the tests results were fine except his testororone level was low. (That's what being a stay-at-home Dad for seven years does to you!) One of the causes of gynecomastia is hormonal fluctuations, but Dr. S isn't sure what is causing the fluctuations. There are some other issues going on as well, but I will spare you all the sordid details. I am sure Bo will also appreciate not having his sensitive health matters exposed to the world, so to speak. Next steps for Bo: an appointment with a urologist in which couldn't be scheduled until the middle of September and an ultrasound to rule out testicular cancer (a highly remote possibility). Thanks to everyone who called to check in on Bo and see how his visit went. He was quite relieved and will feel even better following the appointment with the urologist.

I had my sixth chemo treatment yesterday, and I only have two more to go. Woo hoo! I am 75% of the way there. In six weeks, I will be done with these toxic, yet life saving chemical drips. I have another ultrasound scheduled for next Wednesday, and I am hopeful that the tumor continues to diminish in size. As has been the case all along, I feel great. My energy level is normal, and I have been able to maintain a strenuous exercise schedule. I have not experienced any nausea either. I am truly fortunate. I do believe I am suffering from chemo brain, however. I went to yoga tonight and forgot to bring my yoga mat in, so I had to go out to the car to get it. As I was driving home after class, I realized I had left the yoga mat on the floor. Oh well. It's better than throwing up!

My son, Clay, the six year old, I am certain is destined for a career in drama (or a life of drama - one or the other!). I say that for a number of reasons including his active imagination, his creativity, his theatrical tendencies, his sensitivity, and his very loud voice which projects for miles. We were in Walmart shopping in the meat section one day when he bellowed in a voice made for the stage, "Mom, do you still have breast cancer?" Out of the mouths of babes... "Yes, honey, I still have breast cancer, but I am going to be just fine," I responded in my usual, soft-spoken voice. I didn't look around to see who witnessed this exchange, not that it mattered to me, but I didn't want anyone to feel awkward.

It didn't dawn on me until weeks later that if I had had the surgery first, I would have been able to answer that question differently. If I had had the surgery first, I could say that I had cancer and was now just receiving treatment to ensure it doesn't return. By having the chemo first, I still have cancer and will until the day of the surgery. Remember I said I would be celebrating on October 4, the day of my last chemo treatment? An even bigger celebration will occur when I awaken from the surgery and know that the tumor is gone. Then I can say that I had cancer.

Yesterday I asked Gloria, my oncology nurse and now good buddy, when the surgery would be scheduled, and she said it varies by surgeon, but it is usually anywhere from three to six weeks after the completion of chemo and is dependent on the blood counts. My preference is for the three week timeframe, so I will have to have a conversation with Dr. H about this. My preference should count for something!

I had to go back by the oncologist's office today for a shot of Neulasta since my white blood count last time didn't recover as quickly without it as was desired, and they want to keep me on schedule for treatments. Now that I know how much the shots cost, I feel that they should make the earth move under my feet, clean my house, and change the oil in my car, at a minimum. Alas, it just hurt going in as usual. I guess I will have to settle on just a speedier increased white blood count.

The Great Getaways

2006-08-21T10:40:00.000-05:00

We were only gone for three days and two nights, but our little mini vacation was enjoyed by all. We stayed at the Virginia Beach oceanfront, and while the beach stretched for miles, the boys preferred the indoor pool at the hotel. That worked out well since I am supposed to avoid the sun while undergoing chemotherapy anyway. We also took the boys on a pirate cruise where they dressed up as pirates, fought Pirate Pete with water cannons, searched for treasure, and drank grog. We visited the Virginia Aquarium and saw an IMAX movie about the deep sea. The boys would have preferred to have seen Superman Returns, but unfortunately (?) there were no showings scheduled in the IMAX theater that day. I began training for next year's Pan Mass Challenge! I got in my first "official" training miles - six of them. We rented one of those family bikes and rode along the boardwalk, and Bo and I pedaled while Cole, Clay, and Lance fussed about who got to sit in the middle. It was a really nice getaway that I think we all needed, and I am glad we were able to squeeze it in before school starts in two weeks.

There's not much news on the cancer front. I have been watching my appearance undergo another transformation as my eyelashes and eyebrows fall out. I was hoping to have dodged that bullet, but no such luck. I am not sure if it is the cumulative effects of the chemo treatments or if the taxotere is removing the hair the adriamycin/cytoxin cocktail didn't. When I lost my hair, it all came out in one week, and what was left after that week, hung on - literally. (I have noticed that since the Taxotere though, my almost bare head is comes a little closer to approaching totally bare each day, but we're not quite there yet.) I was hoping the same thing would happen with my eyelashes and eyebrows - that whatever was going to fall out would make its departure within a week and that the rest would have the good graces to keep me company until the others returned. Each day, however, I lose more and more. My normally full, thick eyebrows are thinning rapidly, and I sense an eyebrow pencil in my near future. Between both eyes, I have about 18 little lashes left between the top and bottom, but their days are most likely numbered.

To commemorate my absent hair, eyelashes, and eye brows during their getaway, I have come up with the following advantages of having none of the above:

I save money on:
shampoo,
conditioner,
styling products,
hair cuts,
hair color,
hair accessories,
mascara, and
eyebrow gel.

I no longer have to worry about getting eyelashes stuck in my eyes.

I no longer have to pluck my eyebrows, and sprouting a uni-brow is a total impossibility now.

There is nothing blocking the view to my green eyes.

I no longer have to sweep up pounds of hair off the floor every week as was the case when I was endowed with a full head of hair. (Actually, I never did sweep it up, Bo does the sweeping.)

I no longer have to scoop the pounds of hair out of the shower drain each day as was the case when I was fully endowed. (Actually, I did do this chore myself.)

I no longer have to wonder whether to buy black mascara, brown mascara or brown/black mascara. Blue was never a consideration for me.

I don't have bad hair days.

I don't have to wash that gray right out of my hair anymore.

I get great scalp massages each morning in the shower - there is no hair in the way to block the streams of water.

I get to wear lots of cool hats.

I am sure I could come up with more advantages, but that's enough to keep me going until the hair, eyelashes, and eyebrows make their joyful return to my eagerly awaiting head.

Ever Wondered How Much a Shot of Neulasta Costs?

2006-08-16T19:56:00.000-05:00

The blood test and the shot I received this morning are the only medical procedures scheduled for the week. Gloria asked if my mouth was feeling better, and did the mouthwash help? Oops. I forgot to pick up the prescription, but I told her I was back to eating salsa without any discomfort. The thought of suspending my salsa consumption never crossed my mind. For me, it is one of the primary food groups. Also, I seem to be craving it more than usual, and since tomatos are loaded with all kinds of healthy substances, my body may be telling me something. Who am I not to listen?

My white blood count is still very low, even though it has been two weeks since my chemo. It is higher than last week but still quite a bit shy of what it needs to be to receive chemo next Wednesday. Not to worry. Gloria said we had two options: At the time of my treatment they can give me a shot that will boost the white blood count very quickly or they can adminster the chemo and then give me the shot of the Neulasta the following day knowing that the Neulasta will elevate the count.

If you will recall, when I was getting the Adriamycin and Cytoxin every two weeks, I received a shot of Neulasta 24 hours following the chemo to raise my white blood cell count before the next treatment. Since the Taxotere is given every three weeks, the thought is that my white blood cell count has a longer period of time to recover and that the Neulasta is not necessary - and it may not be necessary. We will know next week.

According to Gloria, Dr. P. was thinking because I am young (At 41 I don't hear that word used to describe me much these days, but I will take it!) that my blood count would recover quickly on its own. I asked Gloria if there were any natural methods I could use to raise it, and she said to eat white vegetables, like potatos. It was a joke.

Of course, as flattered as I am by her confidence in my youthful regenerative abilities, Dr. P's decision not to give me Neulasta may have nothing to do with my age at all. I received a bill from Dr. P's office last week. (The mailman delivers bills on a daily basis these days, and Bo has a few thrown in now too for variety.) It was four pages long, and I couldn't decipher it. It could be totally wrong, and I would have no way of knowing. One thing caught my attention, however, and I did call the billing office. "Hello, this is Mary Beth Gibson, and I was just reviewing my bill. I wanted to make sure that breast cancer isn't affecting my eyesight. I see a charge for one Neulasta shot, and it says that it costs $6892.00." "Yes, ma'am, that is correct." "You are sure the decimal is in the right place?" "Yes, ma'am." "There aren't extra numbers in that figure?" "No, ma'am." Whoa - thank God I have excellent health insurance, but what about all the people who don't?

Speaking of Bo, he has an appointment with his doctor next Tuesday morning. He called last week to find out the results of his blood work. They were running eight different tests. Dr. S said that some of the tests came back good and that she would discuss the results with him next week but that he shouldn't be concerned. Of course, he has been concerned ever since that conversation. "What does she mean by 'some of the tests?'" "Does that mean some of the tests haven't come back yet or that some of them came back bad?" I am hoping he gets some answers next Tuesday because his imagination comes up with possibilities that are probably far worse than the reality. Hmmm.... sounds familiar. Yes, I know, but it's different when I do it!

The family is headed to Virginia Beach tomorrow for three days and two nights of rest and relaxation. Okay, with three boys there may not be much R & R, but we will have big fun. The summer has really gotten away from me, and while I haven't been able to work full time, neither have I taken any vacation time. Since I am now my own boss, I gave myself a couple of days off.

Hats Galore

2006-08-14T20:16:00.000-05:00

My sister-in-law, JoLynn, sure knows how to throw a party. This past Saturday was the day of the hat party. A few people told me that they had never heard of a hat party before. Well neither had I, and it is something I wouldn't have minded going a lifetime not having, but if you have breast cancer, you may as well have a party!

We had the gathering at my mother-in-law's place down on the Rapahannock River, close to the Chesapeake Bay. It is one of my favorite places in the world to go. During one of my hypnosis sessions, when Andi told me to imagine a place of peace and relaxation, the loveseat on Mama's screened in porch, is where my mind took me. Charlene, my other sister-in-law calls that loveseat my happy spot. It really is.

It was a beautiful day. Even though it is the middle of August, the savage heat of summer had retreated, at least for that day. Being on the river, we were caressed by a nice breeze as well. At one point, I actually had to borrow a sweater. Ann and Abbie, two of my Mom's friends (and mine too) who traveled from Blacksburg for the party, said that I looked so much like my Mom at that moment. (My Mom was always cold and was never without a sweater, until hot flashes entered her life.) I have noticed the same thing as I get older. I will catch glimpses of myself in the mirror and see my Mom looking back at me. I can't help but think it must be bittersweet for my Dad...

Guests were asked to bring a hat and wear a hat. Everyone looked so great in their hats. I don't know why we women don't wear them more often. I am having so much fun with them that even after my hair grows back, I plan to keep wearing them. (I have only worn a wig once, and it just looked and felt so unnatural to me that I went right back to the hats.) I do intend to donate some of the hats to the Hat Trader to loan to other women who are experiencing hair loss as the result of chemo.

After chowing down on the yummy munchies that JoLynn and Mama had prepared, and following the serving of the cake that was in the shape of hat, we all settled down on the screened in porch so I could open all of the gift bags containing hats, hats, and more hats. Most of the guests also gave me the hats they wore to the party. I was overwhelmed by it all.

As I opened the bags, I tried on each hat. The first time I bared my head for all to see was a little uncomfortable (for me), but I knew I was among friends and family who didn't care about my almost bald head. Afterall, that was why they were all there - to support me during this time. I never thought I would be so self-conscious about it, but I don't really think you can understand how traumatic it is to suddenly lose your hair until you actually experience it.

I received so many beautiful hats in many different styles and colors. The predominant color of the day was pink, in various shades and patterns. Some hats were made from fabric, others from straw, and still others from paper that looked kind of like fabric. My Dad had picked out a very attractive wool hat during his recent travels throughout Nova Scotia that will be perfect when the weather gets cold. (By my estimates, I probably won't have a full head of hair again until late winter, maybe February or so...) The hat was from him and his signficant other, Laura, but because no men apparently wanted to endure the hat party, Laura brought the hat over by herself. (Mama sent her husband, Richard, upstairs to his room for the party, but I am sure he would have retreated there on his own had he not been banished.) I also received some scarves and maybe someone can help this fashion-challenged woman figure out what do do with them. Volunteers, anyone?

In addition to the more sophisticated hats, I received baseball caps in every color of the rainbow. Some were plain, a couple had fancy monograms, and one was even adorned with a huge plastic crib hunched on the bill with springy legs clicking away. (This was not indicative of my disposition but rather a reflection of this region which is known for its crabs). Charlene, who knows every one within a fify mile radius of the area, had collected caps from many of the local establishments, including J & W Seafood, and the Sandy Bottom Market and McCauley's Welding. (As I was cleaning up the house earlier that morning, I was trying to figure out what to do with all of the boy's caps, including, Bo's. I was thinking we may have to get rid of some of them. Now we definitely have to get rid of theirs - to make room for mine. I have more caps than the four of them combined!)

I was so touched by the effort that Bo's family (and now mine) put into the party, the generosity of all of the partygoers, and the love and support I continue to receive from everyone who was there and everyone who would have been there if they could have been. After all the hats were packed back into their bags, I told everyone how much fun I had, what a great party it was, and that I hoped that I, nor they, ever had to attend a hat party again! That being said, I would do the same thing for any friend or family member who had to undergo chemo. It was a special day.

Abbie and Ann came home with me and spent the night before returning to Blacksburg on Sunday. Abbie had breast cancer 17 years ago. She was diagnosed at 45, and her situation was similar to mine. She is an inspiration, and I really enjoyed the opportunity to talk to her about her experiences. It helps me to talk to long-term survivors since my closest experience to breast cancer is my mother's, and my mind can't help but visit that place occasionally, even though I refuse to have her outcome.

I happened to receive a PMC care package from my cousin, Kathy, that day, and it contained, of all things, a fluorescent, lime green Pan Mass Challenge baseball cap. The one color of the rainbow I was missing... While I haven't spoken to her since last weekend, she obviously survived her 90 mile bike ride to raise money for cancer research. She had called me the night prior to the ride to let me know that she would be thinking of me during the ride. I will have to check in and see how her fundraising is going.

If anyone needs to borrow a hat... I am your lady!

Confirmation

2006-08-09T21:02:00.000-05:00

I was back at the Women's Imaging Center this morning with ultrasound films in hand. Of all the procedures I have experienced in the last few months, ultrasound has become my favorite because it is the least invasive procedure and involves no noisy or claustrophia invoking machines, sharp instruments, consumption of mysterious and nasty tasting cocktails, radioactivity, or side effects. Also, the results are available immediately. What more could you want in a medical procedure?

After the ultrasound tech took the measurements, she printed off the films and brought them to the radiologist on duty. Dr. D wasn't in today, and I had never met the other doctor before. He popped into the room long enough to share the results. On May 15, the day of the original ultrasound and the day I first heard I had cancer, the larger mass measured 3.5 centimeters. Today, that same mass measured 2.6 centimeters. The tenacious entity isn't as tenacious as I am! If the MRI is to be believed, that means the tumor has done all of its shrinking in the last two weeks. Ultrasound certainly isn't as accurate as an MRI; nonetheless, there is now confirmation, beyond just physical touch, that the tumor is diminishing in size.

I felt relieved and happy as I left the Imaging Center and headed over to the oncologist's office for my lab work. Gloria, my oncology nurse took a peek at my mouth and speculated that the chemo is giving me a sore throat, thus, the salsa effect. I have no evidence of mouth sores. She called in a prescription for a mouth wash that should help. I told her that I don't really feel tired, but I think the chemo may be catching up with me a bit. When I was on the treadmill yesterday, I was able to do my 45 minute workout, but it wasn't at my usual intensity. She said that the effects of the chemo are cumulative, so with each treatment, I may experience more side effects. Good thing I only have three left! My last one is October 4, and you all will be able to hear me celebrating all the way from Williamsburg!! Not that the chemo has been terrible for me. I have been very fortunate in that respect, but it will be one stage of the process I will be glad to have behind me so I can move on to the next, and be that much closer to cured.

My white blood counts were low, so Gloria told me to be aware of my weakened immune system and to take the appropriate precautions. She said that Dr. P did not want me on the Neulasta since my treatments are three weeks apart now, and the counts should recover in time for my next treatment.

After completing my medical appointments for the day, I headed over to Busch Gardens to meet up with Bo and the boys, his sister, JoLynn and her husband, Eric, and a friend, Marcie, and her young daughter, Casey. It was a beautiful day and was only in the 8os, compared to the triple digits we have been experiencing. Of course, that meant many other people wanted to enjoy the park as well, so it was very crowded. For me, it was a nice change from the usual work and/or medical appointments that have filled my days this summer.

The Second Opinion

2006-08-08T20:10:00.000-05:00

Well, I guess the effects of chemo brain were demonstrated this morning. I arrived promptly at the Women's Imaging Center for my 9:00 a.m. ultrasound, only to find out that I was a day early. Oops. They were going to squeeze me in anyway (one of the perks of being a regular), but then they realized that my previous ultrasound films were at MCV for my second opinion appointment, and so there would be no basis of comparison for today's films versus the original films. We agreed that I would bring the films home with me this afternoon and return in the morning for my actual appointment. It worked out fine because if I hadn't shown up unexpectedly this morning, I wouldn't have known to bring the films back with me. The universe moves in mysterious ways.

Bo and I dropped the kids off at two different friends' houses this afternoon to disperse the energy output of three boys to a manageable level for our friends. We may need to call on them again! Then we headed for Richmond, about 45 minutes away. The Medical College of Virginia is a research hospital and as such, it was far more impersonal and much more institutional than my own doctors' offices. Everyone was very professional and very kind and compassionate, but I kind of felt like I was waiting for my number to be called at the deli counter. I shared this observation with Bo later, and he said that he had the same feeling. I didn't see it, but he said one of the rooms in which we waited had a sign, "Patient, please take a number."

Dr. B, the surgeon, said that since Dr. P had called him about me so he was already familiar with my case before my information was presented at the the "tumor conference" earlier this morning. Many doctors use a tumor conference to bring the various disciplines together (surgeon, oncologist, pathologist, radiologist, and the radiation doctor) to review and discuss their patients and determine the best treatment options. My surgeon, Dr. H, also engages in this practice.

Dr. B actually conducted one of the leading studies on neo-adjuvent chemo (chemo before surgery), and he confirmed that there is no data to suggest that neo-adjuvent chemo versus chemo following surgery has an effect on survival rates. Because the chemo can frequently shrink the tumor, it is often used by women with inoperable tumors or women interested in breast conservation. I have always known I was deploying the big guns (mastectomy), and so breast conservation has never been an issue for me. I'll trade my breasts for my life any day without a second thought about it! He also said that neo-adjuvent chemo also 1) allows the doctors to gauge the effectiveness of the chemo (although I need to ask my oncologist the significance of this data point), 2) helps facilitate the surgery if the tumor does, in fact, shrink, and 3) may promote early menopause and thus, cut off the estrogen supply. He said since the tumor does now seem to be responding to the chemo, it makes sense to continue the Taxotere.

Dr. B measured the tumor and thought it was about 2 cm by 2 cm. This is not a very precise method, but nonetheless, encouraging. When I had my first appointment with Dr. H back in May, the measurement was about 4 cm by 3.5 cm. Some of that was undoubtably bruising and inflammation from the biopsy, but even so, it is smaller!!! He asked me if it felt softer (it does) and indicated that softening is usually the first sign of response.

He then asked me what I intended to do about the other breast. That's easy. I am having a bilateral mastectomy. Take 'em both, and I'll start from scratch. This time around I can pick the size, and maybe I'll even let Bo have some input... Actually, Bo said he'll support whatever decision I make about having one or both removed and about whether or not I choose to have reconstruction. He has always been more of a derrierre man anyway.

Seriously, after learning that my genetic test results were inconclusive and that I did have some type of mystery mutation, I knew a double mastectomy was the best course of action for me. Bo is also of the opinion that I should have both removed - he doesn't want to go through this again anymore than I do. Dr. B said he had just seen a study that found women without the known genetic markers but with a family history such as mine had a 40% chance of getting breast cancer in the second breast. So there you have it. He just confirmed my decision. If I opt for reconstruction, he recommended I postpone reconstruction until after radiation because 50% of implants are damaged by radiation and end up being replaced or that I go for the reconstruction that doesn't involve implants. I will deal with all that stuff when the time comes.

A medical oncologist also dropped in and spent a few minutes with me. He said that he and Dr. B had discussed my case at length earlier that day and that he felt that continuing on the Taxotere was appropriate, especially since I was tolerating chemo very well. Well, yes, I am tolerating it well, except for the salsa effect. He was actually a little surprised that I was having any issues with my mouth on Taxotere as it is much more common with the other chemo drugs. He suggested that I suck on ice chips during the next treatment, and that will help minimize the effects of the chemo on my mouth. (A former colleague at the Department of Social Services who had breast cancer several years ago had recommended this tip to me, so I will definitely try it. Until then, I am eating only mild salsa. Green Mountain Gringo is particular yummy!)

It was reassuring to hear from two other cancer specialists that my course of treatment is appropriate and consistent with current knowledge (with the caveat that treatment is not an exact science). It was confirmation that nothing has been missed, and I am good hands with Dr. P and Dr. H.

My Rollercoaster Update

2006-08-06T20:28:00.000-05:00

The week kind of got away from me, so it is now Sunday evening, and we are preparing for a new week at the Gibson household. Before I get too far behind, I wanted to write about my appointment last Wednesday with Dr. P, the oncologist. I also had my fifth chemo treatment on that day, and they started me on a different drug, Taxotere. It is my understanding the drugs I received during the first four rounds were supposed to attack the DNA of cancer cells. I believe Taxotere attacks the structure of the cancer cells. The two different sets of drugs, in conjunction with eachother, are supposed to produce a greater response than either used alone.

I ended up going alone because I didn't know until Tuesday afternoon that I would even be getting a treatment, and by then, I didn't try to get a sitter for the kids. My Dad is still in Canada leading a group of teachers and students on an unforgettable trip through Nova Scotia, so he hasn't been available for babysitting for a couple weeks. I am sure any of our friends would have been happy to do it, but at this point, it isn't a big deal to go solo. I know what to expect, and the staff keeps me company. I read a book one of the nurses wanted me to read entitled, "Not Today, I am Having a No Hair Day." It was written by a woman who had breast cancer. Like me, she also found out on her son's birthday that she had breast cancer. The book was amusing and reinforced the importance of keeping a sense of humor. She wrote it because at the time of her diagnosis, there weren't any humorous books about cancer. I doubt there are too many more now, but I haven't looked. It obviously isn't a funny topic, but I can tell you from personal experience, there are plenty of opportunities to laugh about it if you choose to.

Dr. P probably spent 45 minutes with me. We discussed the latest research. I had printed some articles off for her, and she had printed some studies off for me. She told me that she had reached out to three research institutions, including Duke and MCV, upon hearing my MRI results last week in order to discuss my case with colleagues who specialize in breast cancer. (She actually spoke to the surgeon whom I will be seeing for a second opinion on Tuesday.) I really appreciated her reaching out to others because it just reaffirms for me that she is truly advocating for me getting the best treatment.

After consulting with them, she said she was okay holding off on surgery as long as the tumor didn't increase size. She said that the fact I experienced no decrease in size means the disease is considered stable. She believes my tumor will be very responsive to hormone treatment (tamoxifen), and for that reason, she is anxious to get me started on that. Hormone treatment can't begin until after chemo and following surgery. Overall, she was encouraging, even though the tumor hadn't responded as we hoped, and I felt better after speaking with her.

Then, she did the physical exam. When she felt the tumor, her eyes got wide, and she looked at me. She said, "The tumor is definitely responding. It is responding!" I was so happy to hear her say that because for the first time ever, I really thought that the tumor did actually feel smaller this week. Then I started doubting myself because I just had the MRI one week ago, and it showed no change. Could it really shrink in a week? Apparently so. Her theories: We didn't give the dose dense chemo (every two weeks as opposed to the more traditional every three weeks) time to show a response. And/or since my periods have stopped because of the chemo, the tumor is no longer getting its needed food supply of estrogen. Who cares why or how? I am just thrilled that I am not imagining things. Chemo brain, I can handle. Delusions are another matter.

Dr. P literally skipped down the hallway, announcing, "It's responding! It's responding!" I was excited because 1) she really cares about what happens to me and 2) it is obviously a very good thing that it is shrinking or she wouldn't have been that enthusiastic about it.

Since then, the tumor continues to feel like it is shrinking. The location actually throbs almost continuously, so I can't help but think the Taxotere is doing quite a number on the tumor. I am going for an ultrasound on Tuesday, and another one at the end of the month to track the size. (MRIs are too expensive and cannot be ordered frequently because the insurance companies won't keep reimbursing for them.)

I have now had five of the eight rounds of chemo which means I am over half way done. Woo hoo!!!! The taxotere treatments are spaced three weeks apart which will bring me to the end of September. As has been the case with the preceding treatments, I am feeling great. My finernails feel very sensitive though...

Gloria, the oncology nurse, before she understood my personal theory on side effects, or because she felt obligated to inform me anyway, managed to blurt out before I could silence her that Taxotere can actually cause the nails to separate from the beds in some people. Ouch!!!! Ever since, I have been engaged in an active discussion with my subconscious that my nails are just fine. In fact, I took my mother-in-law to a day spa yesterday and treated us both to a manicure and a pedicure for her birthday. Now if spending over $60.00 on my nails is not communicating a clear message to my nails that I intend for them to stay firmly on their beds, I am not sure what it is.

I have also noticed increased sensitivity to hot water when doing the dishes. My mouth is not quite as tolerant of the hot salsas I can usually handle with ease. There are other little things like that going on that just feel a little different or strange, but certainly nothing that I can't handle. Because taxotere has fewer serious side effects, I no longer need the shot of Neulasta to promote white blood cell growth. I also don't have to take as much anti-nausea medicine. While I am obviously taking advantage of all of the medical treatments available to cure my cancer, I prefer to minimize the number of drugs I have to take. One of the most frustrating parts of this experience has been trying to get help with developing a holistic approach to the healing process. More on that another day. The rest of the house is asleep, and I am going to join them.

The Rollercoasters Continue

2006-08-02T21:36:00.000-05:00

First Bo's roller coaster: His primary care physician, Dr. S (none of the doctors among our growing collection has the same last initials as any of the others so far, but at the rate we are added them, that may change), called him yesterday and said she wants to see him as soon as he is off the three weeks of antibiotics she prescribed for an infection. She also said she needs to send him for some blood work to see if she can determine the underlying cause of the gynecomastia. Although he is anxious to find out what is causing the swelling, he was quite relieved that it wasn't cancer.

Dr. S called back today and said that she had been thinking about his situation some more and wants to get him over to a urologist because of one of the underlying causes of gynecomastia is.... testicular cancer. Here we go again. My worrier of a husband now has another form of cancer to worry about. It is funny because each one of us is sitting here telling the other not to worry. Yea, right!!! I am still confident his situation is caused by something much less benign, but he now joins me in the test results waiting game.

He also made the mistake of reading the side effects for his antibiotics. Big no no. He is now experiencing three of the symptoms. Call me weird, but I am telling you from experience, never read that little pamphlet! Once the seeds are planted, they can trick your subconscious into creating reality from the possibilities. I told him that if I could keep my body from having side effects from the red devil chemo (except from the hair loss that was already planted so completely in my subconscious as inevitable that even hypnosis couldn't help that one!), he could certainly keep from experiencing side effects from wimpy little antibiotics. But then, he isn't quite the tenacious entity that I am. It is why we get along so well.

I am going to save my own rollercoaster update for tomorrow, but after the past week's uphill climb, I am back on top of the unnerving Breast Cancercoaster ride after my fifth chemo cycle and a very encouraging appointment with Dr. P today. It is nearly 11:00 p.m. though, and I am ready to call it a day. (By the way and for whatever it matters, the posting time on this blog site is not on any time zone I have been able to figure out. I posted last night's blog sometime after 11:00 p.m., and it is showing 1:09 p.m. )

My Husband Had a Mammogram!

2006-08-01T15:09:00.000-05:00

We spent two hours at the Women's Imaging Center yesterday, and Bo doesn't have breast cancer! I knew he didn't. The universe just doesn't work that way. He was diagnosed with something called "Gynecomastia" which is a benign enlargement of the male breast. Now that they have ruled out cancer, his doctor will have to run tests to determine the underlying cause. I wonder if there is a test for sympathy... He had my sympathy because in addition to the ultrasound, they decided to do a mammogram. He said that it smashed what little bit of chest he had. Yes, I know exactly what he means!!

While I was at the Women's Imaging Center, I did meet with Dr. D, the radiologist, regarding my MRI results, and she showed me the actual images from the two MRIs. Sure enough, even to my untrained eye, there was no noticeable difference. That was the first time I have seen images of the tumor, and it was pretty ominous looking. It was one larger mass, with two smaller masses branching out from it. Dr. D considers it to be one tumor, and at its largest point, it is nearly 4 centimeters in diameter.

Dr. D told me that Dr. P, my oncologist, was supposed to call me last week and asked if I had heard from her. No. She then shared with me that Dr. P wants to go ahead and proceed with surgery. Dr. D was aware that Dr. H, my surgeon, wants to continue chemo and then do surgery. I expressed my concern and frustration that my two primary physicians were in conflict, and what kind of position that put me in - total limbo. Cancer is hard enough to manage, never mind managing the physicians! In their defense, however, treament is not an exact science, and there is no right anwer. She was sympathetic to my situation and when I asked her if I should get a second opinion, she said that was certainly an option and mentioned a couple of surgeons I could call.

I left feeling very discouraged and decided the best way to express that emotion was to let the tears flow. So I did, and then I got over it and took action. I can work a plan, but ambiguity is very difficult for me. It was time for a plan. I called my brother, John, who I knew was vacationing in Provincetown with a friend of his, Joe, who is an oncologist. Joe was very encouraging and said that even though the response wasn't what we wanted, the tumor didn't grow, so it doesn't appear to be chemo resistant. He also reiterated that the tumor may in fact be dying but that the MRI wouldn't show be able to show that. Additionally, some tumors, because of their composition, dissolve faster than others. Joe specializes in cancers of the blood, but he called an colleague who does nothing but breast cancer oncology. She recommended continuing chemo...

From the very beginning, Joe, has recommended that I get a second opinion at the Massey Cancer Center at the Medical College of Virginia (MCV) in Richmond, and John has really been pushing me to do the same. I felt the time had come to do that. It is not that I have any doubts about my doctors or about the care I am receiving. They are top in their fields in this region, and I know they are all committed to curing me. It is just that if they can't agree, a new and different set of eyes may help me evaluate the options. Afterall, I only have one life (depending on your religious beliefs), and no one cares about it quite as much as I do. (Bo says he does, and I know he does. I also know he would trade places with me if he could, but I wouldn't let him, even if I could.) So, I went ahead and made an appointment with a renowned oncology surgeon at MCV, Dr. B. I meet with him next Tuesday. He recommended I continue my chemo in the meantime.

Dr. Hoeffer called last evening, and he made his case for continuing chemo. If I heard him correctly, he said that there is a 10% response rate among women to Adriamycin and Cytoxin, but when you introduce the Taxotere, the combination of drugs results in a 44% response rate. The question he couldn't answer, because no one knows the answer: "Is the tumor's response, or lack thereof, indicative of the response to the cancer that may have spread beyond the breast?" No matter. The tumor responded because it isn't bigger, so that means, if it is anywhere else, that responded too!

I finally spoke with Dr. P today. She said she had tried to reach me on Friday but didn't want to leave a message. As I had already heard, she feels very strongly that we remove the tumor now and get me on hormonal treatment as quickly as possible. She doesn't even think that we should continue chemo following the surgery, just radiation. She discussed this course of action with her colleagues at Duke, and they were in agreement; although, I think she said that they didn't see any harm in continuing the chemo either. She did come up with a compromise that really put my mind at ease for the first time since Friday afternoon when I received the MRI results.

I am going to go in tomorrow for my fifth cycle of chemo which will be the Taxotere. She will measure the tumor at that time so we can evaluate if there has been any response at my next appointment. This means that I am receiving some sort of treatment while I am waiting for my appointment with Dr. B. I feel so much better because the tumor will again be under attack. Reinforcements are on the way to aid the pirahna with chainsaws!

With all that being said, I researched and confirmed with the doctors, that there is no statistical difference in survival rates between chemo prior to surgery (neo-adjuvent) versus chemo after surgery (adjuvent). Don't you think that would make me feel a little better that either way, I have an equal chance? Actually, it kind of does, but I still want to evaluate the options and understand the rationale behind each. It's that whole control thing I have going on - cancer hasn't cured me of that... yet!

Pirahna with Chain Saws

2006-07-30T20:38:00.000-05:00

I didn't feel like waiting until Tuesday when Dr. P was back in the office to learn the results of the MRI, so I called Dr. H's office on Friday. Anna, the nurse practicioner, got on the phone, and she sounded surprised that no one had been in touch with me as the results had been available and discussed among my various doctors on Thursday. She thought Dr. D, the radiologist, was supposed to call me. I guess no one wanted to be the one to tell me that the MRI detected no visible difference in the size of the tumor.

Anna immediately told me not to get discouraged. She said that Dr. H is not fazed at all by this. (Oh sure, but it isn't his tumor or his life.) She said he still wants me to continue chemo and do the surgery at the completion of the chemo. I asked if it had grown, and she said, "No." She also reminded me that the MRI could not distinguish between live and dead tumor cells. We won't know for sure until the tumor is removed. I asked her if leaving the tumor in the breast increased the likelihood of it spreading, and she said since there was lymph node involvement, the cat was already out of the bag on that. She mentioned that my tumor was fast growing, and I said, "Isn't it the fast growing cells that are supposed to respond to the chemo." I could tell by her slow and deliberate responses that she was carefully navigating the minefield of questions I was making her walk through. "Yes," she said. "That is the theory, so we may be dealing with a more... uh... tenacious entity than we originally thought."

What about the hand with 30 years of experience that was confident my tumor was shrinking? I didn't ask that question (and if I had, I wouldn't have worded it quite that way), but Anna brought it up herself. She said that when she and Dr. H first saw me, it was right after the biopsy. The biopsy probably caused inflammation and swelling that made the tumor feel larger than it actually was. That explains why everyone who hasn't felt it for awhile thought it was smaller, while I couldn't really feel a difference recently from day to day.

She kept telling me not to get discouraged. She said that we have just begun attacking the tumor and that we have a lot more stuff in the arsenal. She mentioned that many women (40%) have either a partial or complete response to the Taxotere, which is the next chemo drug that I guess I will begin next week. I reminded her that Dr. P has to order the chemo, and she promised to call me on Monday after she had a chance to talk to Dr. H and Dr. P about my schedule. If I am going to continue chemo, I don't want to lose any more time waiting around for the doctors to figure out who is going to call me. (Ouch! Am I getting a little touchy?)

So what does it really mean that there hasn't been a noticeable reduction in the size of the tumor? Maybe something, maybe nothing. Despite Anna's frequent reminders not to get discouraged, of course I got discouraged. Of course I created meaning, and of course it was unfavorable meaning. I allowed myself to shed a few tears that night. My brother, John, said that while this may be an emotional setback for me, it doesn't change the outcome which we know will be my victory over breast cancer. I told him that I guess I was going to have to get more aggressive than the pirahna, to which he responded, "What is more aggressive than pirahna? Pirahna with chainsaws?" Yea. When I was doing my visualization that night, I had a really difficult time figuring out how the pirahna would hold the chain saws though...

By Saturday morning, the moment of despair had passed. At this point, I am starting to get a little p----- off actually. I didn't lose my hair for nothing!! Tenacious entity? Well, so am I! I spent a couple of hours on the internet researching breast cancer on Saturday. I had previously resisted taking this action because I was afraid of what I might learn. Sometimes ignorance is bliss, and I was deliberately avoiding information like survival rates. When doing battle with a tenacious entity, however, one must be fully armed.

I visited reputable sites, like the Susan G. Komen website. It was a wealth of information and cited many recent articles on breast cancer research. I learned a lot. It was encouraging to see that the treatment I am undergoing is supported by recent studies. I do have confidence in my doctors and that they are current on the latest treatment modalities. Nonetheless, I developed a list of about 10 questions to ask them based on the studies I read. What is very apparent: there is still so much that remains unknown about breast cancer and so there is still much guesswork. The doctors are doing the best they can with the data that is available.

And by the way, I did stumble across the survival rates on one of the websites. For Stage II, it is about 80%. (I am assuming that it is the five year survival rate, but it didn't specify.) Of course, I am in the 80%. Also, I have decided to give meaning to the MRI results. The chemo is working because the tumor has not grown larger.

Sweet Potato Pies and MRIs

2006-07-26T21:30:00.000-05:00

Bo brought the boys to visit Papa on Tuesday, and they took him to lunch. I am happy to report that Papa is doing very well. They returned with a real gift. Before she died, Big Nanny had made some sweet potato pies for Bo and the boys and had frozen them. We baked one of them Tuesday and put the other back in the freezer for a special occasion. I don't think Bo has ever savored a pie as much as he did this one. When I was in my office yesterday, Bo and the boys were having pie after finishing up lunch. I overheard Cole say to Bo, "I wish that Big Nanny was still around to make sweet potato pies for us," Bo agreed and responded back, "She's up in heaven making sweet potato pies for God, and all the angels, and everyone else up there, and they are all going 'Mmmm, mmmm, mmmm! This is the best sweet potato pie I have ever had!'" I will have to ask Papa if he has the recipe so that Big Nanny can live on through her pies. I'm not sure I can live up to the legend, and neither is Cole, but I would like to try.

Now for a Bo update. It has been three weeks since he visited his doctor for his "sympathy cyst", and it hasn't gone away, so the doctor scheduled an ultrasound for him this coming Monday (July 31 - my Mom's birthday). He will be going to the Women's Imaging Center, my new hangout. Even though his doctor and Dr. P don't think it is anything to be worried about, Bo went on the internet to WebMD, and what he read really concerned him. He said that breast cancer is men usually occurs as a lump directly behind the nipple, which is where Bo's lump is. I know it is absolutely NOT breast cancer because that would be so statistically improbable, not to mention just way too freaky. Of the two of us, Bo is the worrier, so even though I hate to wish away time, for his sake, I can't wait for next week so we can know for sure that it is nothing that ominous. So Bo will be at the Women's Imaging Center for an ultrasound on what would have been my Mom's 66th birthday, and I was there yesterday on his Mom's birthday for my second MRI.

For five years, we have lived on a lake, and for most of that time, I didn't pay any attention to it, even though I love the water. Ever since the diagnosis, I have made an effort to notice and enjoy my surroundings. For most of my life, I have not eaten breakfast because I just never felt like eating in the morning. Ever since the diagnosis, I have made an effort to nourish my body with healthy food throughout the day. So yesterday morning before I left for my MRI, I was eating my bowl of fresh fruit on the deck overlooking the lake. It was a typical Southern summer morning - the humidity that would rule the later part of the day was just beginning to make its presence known, but it was still very pleasant and comfortable.

I was contemplating the shift in my life from blissful (?) ignorance to a waiting game predicated on test results. (That's not just for the short term either. Once I am cured and officially enter the survivor category, I will be continue to be regularly tested for many years into the future to ensure there has not been a recurrence.) These thoughts, while obviously not uplifting, weren't depressing either. It just reinforced for me that life occurs in the everyday existence between all of the big events, or in my case these days, between the tests. So while the boys departed to the movie theater to watch Curious George, I headed to the Imaging Center determined to enjoy the experience! (Okay, that's a stretch, but at least not be counting the minutes until it was over.)

In the waiting room, I was greeted very cheerfully by the MRI tech, a young woman named Jamie who led back to the MRI area. As Jamie and I were talking, she told me that she had lost twins last year. One died at a day old and the other at 23 days old. My heart went out to her. Early on, I had said that my worst nightmare came true when I was diagnosed with breast cancer, but I nearly instantly reversed that thought once I had voiced it because truly my worst nightmare would be for something to happen to my boys.

When she so cheerfully greeted me, I could have easily let myself think that here is someone who doesn't have a care in the world, and I would have been so wrong. We really don't know what is going on in people's lives, but what I am beginning to really notice is that people you would think have every reason to be gloomy are far from it, while others who seem to have so much to be happy about aren't.

I guess since I knew what to expect this time, the MRI wasn't a big deal. It was still noisy, of course, but I just kind of meditated through it. Joe, the tech from last time, again asked me type of music I would like to hear during the procedure. I told him that I really enjoyed the top 40 station I didn't hear last time over the din, but that I would let him pick the station that I wouldn't be able to hear this time. He picked classical. In one of my more brilliant moments, I asked Jamie if the disposable earplugs they gave me were wireless and picked up the radio stations. She looked at me very kindly and said, "No, there are speakers over your head when you are in the machine."

We were all hoping the test results would be back today, but Dr. P's office called and said that Dr. D, the radiologist, hadn't read them yet, never mind transcribed them. I know I am not their only patient, but I was hoping Dr. D would expedite them. Dr. P doesn't work Fridays or Mondays apparently, so that means I must wait until Tuesday. Then she and Dr. H must hook up and consult. If the decision is to continue chemo, I want to resume immediately so I can get it over with. Plus, I don't like the idea of the tumor sitting around with nothing attacking it but the pirahna! Ideally, I would have started the next round today. Well, I am not going to let it interfere with life between the test results!

I Have a Way You Can Help the Cause

2006-07-22T08:40:00.000-05:00

When Bo and I were in Dr. P's waiting room last week for my lab work, I discovered "Cure" magazine. Can you believe there is a magazine dedicated entirely to cancer and for people who have cancer? Well, it makes sense when you consider this statistic contained in one of the articles: 46% of men will have cancer during their lifetimes, and 38% of women. Those are pretty sobering percentages. Even if you manage to dodge this particular bullet, many people you know and love, will not. The encouraging news is that, as implied by the title of the magazine, cancer doesn't have to be a death sentence.

Treatment for cancer has come so far. Take my situation, for example. Breast cancer is no longer a one-size fits all diagnosis with a standard course of treatment. In fact, since I embarked upon this journey, I have spoken to many women who have breast cancer or have had it, and none of them have or had the same protocol as I have had. The plan is really customized to the specific type of cancer. Is the cancer infiltrating ductal or lobular? What was the age at diagnosis? Is there a family history? Is it estogren/progesterone receptor positive or negative? Is it her2neu positive or negative? How large is the tumor? Is there lymph node involvement? The answers to those questions will determine lumpectomy versus mastectomy, chemo before or after surgery, the duration, frequency and type of chemo, the drugs that will be prescribed during treatment and for years after, radiation or not, etc. That's just for breast cancer. Other types of cancer have very specific protocols also.

The medical community has the benefit of years of extensive research now, but anyone who has cancer benefits the most from that research. I am confident that if my Mom had been given the same type of treatment plan used today and had had the latest drugs available to her, breast cancer would not have claimed her life and robbed this family of this beautiful, gentle woman who truly enjoyed life and people (and dining and dry manhattans).

I am the recipient of advances discovered through hundreds of thousands of women before me, many who unfortunately did not survive breast cancer and many more who have. The survival rates continue to improve for all types of cancer, thanks to the research that is ongoing.

One of the country's foremost cancer research facilities is the Dana Farber Cancer Institute in Boston. Every year, a bike-a-thon, the Pan-Mass(achusetts) Challenge (PMC) is held to raise funds for that institute's "Jimmy Fund", and over 4,000 cyclists participate. My cousin, Kathy, is one of them. She first began riding in the Pan-Mass challenge back in the late 1980s in honor of my mother. (My mother was the sister of Kathy's Mom, my Auntie Jo.)

Kathy is a month younger than me, and her two sons, Tyler and Andy, are both a month younger respectively, than Clay and Lance. We are bonded through multiple parallel pregnancies and through a strong family connection over the years. Plus, we just plain like eachother! Kathy is truly a phenomenal woman, but even wonder women have their limitations. While Kathy focused on family and her career at Middlebury College in Vermont, her participation in the Pan-Mass challenge was put on hold for a decade. She began riding again last year. Kathy wrote in her recent fundraising appeal to friends and family, "This year is particularly meaningul for me in that 2006 marks the 10-year anniversary of the death of my aunt for whom I began riding in the late 1980s, and it is the year that her daughter (my cousin) - Mary Beth Morrill Gibson- was diagnosed with cancer."

When Kathy and I spoke a few weeks ago, she suggested that I do the challenge with her sometime in the future. I committed to do it with her next year when I am cancer free as "living proof" that cancer research makes a difference. Bo, my two brothers, Jeff, and John, my sister-in-law, Julie, my Dad, and my hiking buddy, Jenn, have all committed to participate with me and Kathy in 2007 as well. Consider yourself warned that next year I will be making a personal appeal to each of you to support my victory ride. Anyone else who wants to boost their "hiney parts" on a bicycle for ninety miles is more than welcome to join us! Just let me know.

In the meantime, Kathy is riding this year and must raise a minimum of $2,300 to participate in the first day of the challenge, a nearly 90 mile ride from Wellesely, Massachusetts to the Bourne Bridge at Cape Cod on August 5. She has, however, set an aggressive goal of $6,000. Last year, the challenge raised $23 million of which 99% went to the Jimmy Fund for cancer research. This year, the goal is $24 million.

Many of you have repeatedly told me, "If there is anything I can do to help you and your family out, please let me know." The outpouring of love and support in all of its forms has been more help than any of you realize, but if you want another way to assist, I would ask that you consider making a donation to Kathy's fundraising efforts. Your help will have far reaching benefits beyond just my personal situation.

If you are interested, donations can be made on-line via credit card payment through her (secure) personal PMC web page. It is https://www.pmc.org/egifts/giftinfo.asp?eGiftID=KF0072

Her personal PMC profile page may be viewed at http://www.pmc.org/mypmc/profiles.asp?Section=story&eGiftID=KF0072

While the PMC is a prominent annual event in Massachusetts, outside of that state, most people aren't aware of its significance. A compelling article about the PMC was published in Newsweek last summer can be found at http://www.pmc.org/articles.asp?ArticleID=223

Although Kathy is riding on August 5, donations will be accepted through early October. I have contributed to Kathy's ride each time, and this year will be no different except that for the first time, it is not just for my Mom, it is for me. It is also for Big Nanny and you too, Carrie. Thank you, Kathy, for riding for us and everyone else impacted by this disease now or later, either personally or through people they love. Here's sending pedal power your way!

Back to Perky

2006-07-20T20:08:00.000-05:00

Well, I was able to talk myself back to a good place this week. Most of the time, it has been required minimal effort for me to remain optimistic and enthusiastic, but there are times, like this week, when I have really had to remind myself of and focus on all the wonderful reasons I have to be happy with my beautiful life. I do love my life, and that is probably why when thoughts of my own mortality intrude, as they can't help but doing these days, I do feel sad. I don't fear dying. I just have too much living to do, so I am going to. Something will get me someday, but it will not be breast cancer! Dammit!

I had an appointment with my surgeon, Dr. H. this morning. If you will recall, Anna, his nurse practicioner was diagnosed with breast cancer a few weeks before me. We were both sporting our bare heads and expressing our gratitude that we still had eyebrows and eyelashes. She reminded me a little of Sigourney Weaver in "Aliens." (Incidentally, I was told last week while donning one of my very fashionable hats from the Hat Trader that I looked like Demi Moore, and not in her G.I. Jane role either. Made my day!) Anna is also doing quite well, and it was nice to be able to share experiences.

Dr. H. got up to speed on my situation. I told him that Dr. P. scheduled me for an MRI next Wednesday to assess the tumor's response. He had already felt the tumor. He advised me that he had an equally reliable, far less expensive tool for assessing the response, and held up his hand. "Plus," he added, "this tool has 30 years of experience, and it tells me that your tumor is responding." Woohoo!!! Must have been the pirahna! He also was unable to locate any swollen lymph nodes this time (I had one last time) which he takes to mean that the chemo is working. I was so very happy to hear him say that.

He said to go ahead and get the MRI but that it may not be able to distinguish between the morbid tumor cells and live tumor cells. He is strongly and adamanantly of the position, that unless the tumor has grown, we continue with the chemo and then schedule surgery. His reasoning is this: No one dies from cancer in the breast. Women die when the cancer spreads to other parts of the body. The chemo is now killing any cells that may have spread undetected. The surgery would only be targeting the tumor in the breast and would delay the chemo which is the more systemic treatment. That makes perfectly good sense to me.

I then had to go to Dr. P.'s for my lab work. From the very beginning, Dr. P. has been more inclined to consider surgery sandwiched between chemo. I was discussing my schedule with her office staff and mentioned that Dr. P. will need to consult with Dr. H. on the MRI results next week but that Dr. H. was of the opinion that I should continue chemo. "Oh great," said Pam. "That means we may have phones being thrown around next week." When I asked if the two doctors really get into it like that, she said, "Yes, sometimes. Dr. H. likes to think he is an oncologist, but he is the surgeon." Hmmm.... Well, in the interest of preserving the phones, I hope that the MRI results are not at all ambiguous.

Both doctors can and will make recommendations, but ultimately, the decision is left up to me. Since I am chronically decision averse, I hope there is consensus on the part of Dr. H. and Dr. P. If not, I guess each will have to present a case for their position and provide data that will allow me to come to an informed conclusion about the best way to proceed. I would much prefer to get the chemo over with and then deal with the surgery in the fall. Otherwise, I have to wait a month to recover from the chemo before having surgery. Then I have to wait a month to recover from surgery before resuming chemo. By then, I may have a full head of hair I have to watch fall out again. No way!

More to come...

Lots of Stuff Going On

2006-07-17T08:37:00.000-05:00

I try to update this blog every couple of days, but last week really got away from me, and this blog may be longer than usual as a result. Thursday was a hectic day. My brother, Jeff, and his wife, Julie came to visit us last Sunday. Julie flew home to Massachusestts on Tuesday, and I drove Jeff to the airport in Richmond on Thursday morning. We had a great time with them, and I hated to see them go. As soon as I returned home from the aiport, I grabbed lunch on the go, and Bo and I headed to the oncologist's office for my fourth chemo treatment.

We put a movie in the VCR, but we didn't end up really watching it, so I can't give any stars this week. I tried to get caught up on thank you notes, and Bo caught up on some ZZZZs. I am now 50% of the way through the chemo treatments. As you may recall, the first four treatments have been adriamycin and cytoxan on a dose dense schedule (every two weeks instead of every three weeks). The adriamycin, "affectionately" referred to as "the red devil" (it looks like red kool aid but packs a powerful punch) traditionally has the most side effects. In order to combat one of the side effects, extreme nausea, I took a pill called Kytril twice a day for three days after the chemo treatments. I will no longer need this drug. Good thing too. Can you believe, that even with insurance, the pills were $20 apiece? Withouth insurance, they were over $50 apiece! I guess they were well worth it though. I never experienced any nausea and have been able to eat just about anything I want. Since I have tolerated the adriamycin and cytoxan so well, I should do well with the Taxotere.

The next four treatments will be taxotere on a three week schedule; however, I am not sure when those treatments will begin. Dr. P. came in again to feel the tumor. She still thinks it is smaller, but I am scheduled for an MRI (ugh, not that noisy thing!) on July 26 to determine how well the tumor has responded to the chemo. She and my surgeon, Dr. H, will consult, and if the tumor has not responded well (has not diminished in size), surgery to remove the tumor will be scheduled next. Chemo will then resume following the surgery. If the tumor has responded as hoped, the chemo treatments will continue, and the surgery will be scheduled for the fall. One way or another, the breast will be removed, it is just a matter of when.

Remember Bo's sympathy cyst? While we had Dr. P. in the room with us, I asked her if she wouldn't mind feeling Bo's chest. I am sure she preferred it actually! Bo and I have now had both of our breasts palpitated by Dr. P. How many couples can say that?? She thought that it was awfully nice of Bo to show support for me in this manner. She seems to think that it is just a cyst that has developed from his weight training. She wasn't at all concerned about it, but she did agree that it wouldn't hurt to have an ultrasound done on it.

After we left the office, we scooted back home so I could change. This time, I grabbed dinner on the go, and we headed off on the hour drive to King William County for visiting hours at the funeral home. We left the boys with Bo's mother (Mama). Many people came to pay their last respects to Big Nanny and to show their support for the family. Everyone is doing well.

Friday was just about as busy. I had my weekly networking meeting in the morning and then my final hypnosis session. I told Andi, the hpynotist, that we need to get more aggressive with the tumor as it hasn't shrunk as much as I would have liked, so she incorporated pirahna engaged in a feeding frenzy into my tape this week.

For the last time this week, I grabbed a meal on the go, and this time the whole family headed to the funeral home. Dad went with us too, which was nice. Cole, Clay, and Lance were able to see Big Nanny one last time, and this was important to them. I have been fielding lots of questions from Cole and Clay. The are wondering about where is she now and will she come back.... Don't we all wonder? Following the funeral service where the minister spoke about sweet potato pies and butter beans and a woman who always spoke her mind, we proceeded to the church (and cemetary) in King and Queen County where she and Papa had worshipped early on in their marriage and where Big Nanny's parents are buried.

From there, it was on to their present church in Hanover County where members of that church had prepared a meal for family friends. (we traversed five counties in Virginia on Friday!) This concluded the funeral events. Again, my heart goes out to Papa, as he returns to an empty house and must find new meaning to his days. Please keep him in your prayers.

Saturday, my friend, Jenn, and I were finally able to get together for the walk we have been talking about for a month. I know Jenn from the Development Office at William and Mary. We usually grab a lunch together on a regular basis but thought a brisk hike would be a nice change of pace (pardon the bad pun). She drove down to Newport News with me first. Due to the funeral, I was unable to get my shot of Neulasta yesterday as normally scheduled at4:00 p.m. , so I had to find another way. (The Neulasta is important because it promotes the white blood cell count.) Thank God I do not receive my chemo at the oncology clinic in Newport News! It was so depressing. There was a huge room with probably twenty chairs and i.v. stands set up around the perimeter. It was like assembly line chemo. I much prefer my private room #6 at Dr. P.'s office. I told them just to put up a sign, "Mary's Room." Actually, I prefer they don't because after my eight chemo treatment this year, I NEVER intend to go back to that room.

Jenn and I hiked a great trail along the marsh at York River State Park. We got in a good aerobic workout and were able to catch up on a month's worth of happenings. It was a beautiful morning all around.

I would have to say that this weekend is the first time in the past month or so that I have felt a little down about things. The doctors have told me that many women respond so well to the chemo that it virtually melts the tumor, and in some cases, there is no trace of the tumor. Mine is still very prominently and unmistakeably there following four treatments. Of course, we won't know the effects for certain until I have the MRI next week, and I do believe it is smaller, but I was just hoping for a more dramatic response. Also, from a long term outcome perspective, I don't know what the implications of are. Whenever I try to go there with Dr. P., she tries to keep me focused on "one step at a time." That is probably not a bad thing, but anyone who knows my anal-retentive, need-to-know, planning and organizing (control freak) type of personality, can probably understand how difficult this is for me. It is also my nature to take limited information and create meaning with it, and it doesn't help that I am more inclined to jump to worst case scenario.

If that's not enough - I used to be able to track hormonal fluctuations on the calendar like clockwork, and I would know if I was feeling a little teary because I was "PMS ing", (which is quite honestly the only time I ever feel teary. Well that and sappy movies and t.v. commercials.) Chemo, however, has the effect of launching you into the uncharted territory of an early menopausal-like state. I think I am experiencing hot flashes in the evenings. Since I usually always run cold, the fact that I am checking the temperature on the air conditioning and then lowering it means that something is up! This may be contributing to my mood. Of course, being surrounded by the experience of losing Big Nanny has kind of put the whole concept of death right out front and center this week. So, I imagine that it is a combination of all of these things.

That being said, I haven't been all all despondent and depressed. I just wouldn't be have been honest with myself and with you if I didn't admit I was a little sad about things this weekend. I know I have every reason to continue to be optimistic though, and I understand that attitude is everything. I love my life, and I see every new day is a gift. I plan to continue living life to the fullest each and every day - that is all any of us has.

This One is for You, Big Nanny

2006-07-12T08:14:00.000-05:00

Bo's grandmother passed away last evening from ovarian cancer. She was originally diagnosed with ovarian cancer back in 2000 when Bo and I were living in Florida, and she had surgery at that time. I remember thinking that she probably wouldn't be around for long because ovarian cancer has such a high mortality rate. Also, she had been in poor health with a weak heart ever since I had been a part of the family. Nonetheless, it was never mentioned again and she was fine until several months ago. Then they discovered the cancer was back and that it was pretty widespread. About the only thing that could be done this time was palliative care.

She went into the hospital last Wednesday, and we visited her on Friday and again on Sunday. On Sunday, we were allowed to bring the boys in to see her, and she was alert enough to interact with them. Bo and I also visited her yesterday afternoon. I knew the end was near, but I didn't know as we left that I had kissed her and said "I love you" for the last time. As Bo and I were waiting by the bank of elevators on the third floor to go back downstairs, we could observe the nursery and see all of the activity around the little newborn babies. We were both thinking about the circle of life. Big Nanny was 83 years old and had a full life. That doesn't make it any easier to say "goodbye", but it is comforting to know she lived a good life and that she is no longer suffering.

She was never called, just "Nanny". We always called her "Big Nanny." The reason escapes me because she couldn't have been five feet tall, and she probably wasn't more than 120 pounds soaking wet. Bo thinks the nickname started as a joke. While her physical stature wasn't big, her presence was. Her health may have been weak, but her will was strong, and she was the family matriarch.

She wasn't the real touchy-feely type of grandmother who smothered you with hugs and kisses, but you always felt loved. She often showed her love with food. Almost every time we went to visit, we left with a sweet potato pie (Bo's favorite since boyhood) or some other type of homemade treat. She was known for her butter beans. She used a pressure cooker and a little bit of margarine (pronounced margareen), but her secret was to add a little bit of sugar when cooking vegetables. Her mama taught her that. Every year, she insisted on having family holidays at her house, and we didn't mind. She would put out quite the spread for us. Several years ago, we all thought it would be easier on her to have it somewhere else, and she reluctantly agreed. I volunteered our house. She still cooked just about everything she normally did and brought it over to our house. She then commandeered my kitchen, and showed me the right way to make mashed potatos and whatever else I was preparing. Anyone else, and I may have been a little put out. Nanny and I got along just fine though. Bo thinks it is because we were so much alike and appreciated eachother's strengths.

Even though the past couple of months were very hard on her, she was always thinking about us. She remembered Lance's and Clay's birthdays and sent cards with the usual $10.00 enclosed to buy a toy. She was very concerned about me and was always asking how I was doing. She lived a life of service and generosity, and of compassion and concern to others up until the very end.

Bo's father told him that last evening, Big Nanny's breathing had became quite labored. She took two deep breaths and then she held up her hand and it looked like she waved. That was the end. I would like to think she was waving goodbye. It would be just like Nanny to depart this world with that last little bit of gumption.

Bo is holding up well. He met his Dad and his grandfather at the funeral home this morning to begin making arrangements. Big Nanny and Papa have been married 63 years. It would have been 64 on Halloween of this year, so I cannot begin to imagine what Papa must be feeling. He is a wonderful, kind man. He has spent so many years caring for Big Nanny that he probably won't know what to do with himself. Cole said last night, "We should all take turns going to sleep with Papa so he won't be alone."

Please keep the family in your thoughts and prayers, especially Bo's grandfather and father. Thelma Gibson's spirit will live on through us in the many ways she touched our lives. We love you, Big Nanny!!

Weirder than Weird

2006-07-07T04:50:00.000-05:00

Bo and I celebrated our wedding anniversary on July 5 - nine years of matrimonial bliss. Okay, that may be a little bit of stretch. It has been nine years though, and probably 8.75 of them have been pretty content and the remaining .25 have been only a little frustrating. Regardless, we are happy. I would attribute this to our acceptance of eachother for who we are. Bo did this from the day we met. He has always loved the woman I am, flaws and all, and hasn't tried to change me. It took me a little longer to get there. I joke that I was perfect when our paths first crossed back in June 1995 and that he still needed work. The truth is, I was the one who needed a little bit of work to realize that love isn't about shaping the person into who you think they should be or who you want them to be - it is about helping your partner grow in the ways important to that person. I love my husband!!!

So what's weird about that? Nothing, but this is. I am sure you have heard of sympathy pain. Well, Bo seems to have taken that to an extreme. Bo has developed a hard mass under the nipple on his left side. He went to the doctor yesterday, and the doctor isn't exactly sure what it is. She doesn't think that it is anything to be concerned about though. Nonetheless, she said that if it doesn't go away in two to three weeks, she wants to send him to Dr. D ( my radiologist) to have it checked out. Men do get breast cancer, but it is extremely rare. Only 2,000 men are diagnosed each year with breast cancer, compared to 200,000 women. We are not worried about it, but we are hoping that it does go away on its own so that it is one less thing we need to think about.

I went for my labwork yesterday and all of my counts were acceptable. My red blood count was still a little low, but I received medicine after my last chemo treatment to help raise it and boost my energy level. Energy level really hasn't been an issue though. I haven't noticed any decline and have even been able to maintain my regular treadmill routine.

I am meeting lots of other cancer patients during my visits to the oncologist's office. It is actually a little scary how routine the conversations about cancer have become for me. Yesterday, we were discussing treatment options and side effects and exchanging tips on coping. Even though the journey is very personal, I understand now that I have become part of a very, very large circle of people who are experiencing similar things. One of the women mentioned that she had seen a t-shirt that said, "I have chemo brain. What is your excuse?" What will they come up with next? (Chemo brain, I am told, is inability to focus or concentrate, loss of memory, etc. Shoot. I have had those symptons since I started having kids, so I doubt I'll even notice that!)

I had a couple of very nice visits this week. John, a former co-worker from the Department of Social Services, and his wife, Margaret, joined us for dinner Monday night. John has the distinction of being my first professional mentor upon my graduation from William and Mary 20 (ugh!) years ago and the ensuing introduction to the world of work. Our families have remained close over the years. My friend, Pam, and her daughter Kristin, took me to dinner last night. Pam is also a former colleague from my Social Services days. All this attention is very nice and very appreciated, and I want everyone to know that I hope the increased focus on friendships and making the efforts to see eachother to continue long after I am cancer free! It is so easy to get caught up with the day to day aspects of living that we forget that life is all about the relationships we nurture and the way we touch others.

Feeling Wonderful

2006-07-02T07:58:00.000-05:00

I am three days into my third chemo treatment and I am still feeling great. When I hear from others about how much the chemo affected them, I consider my own response to the treatment to be a small miracle and a most appreciated miracle. I told my wonderful oncology nurse, Gloria, on Thursday that I was actually a little concerned that the only noticeable side effect I have experienced from the chemo has been losing the hair on my head. Was the chemo working? She said that the two have absolutely nothing to do with eachother and that I am just very "resilient." (I like that word.) My so-called resilience has been a blessing because the impact of my treatment on the family has been minimal. There has been no disruption to our normal routine.

My friend, Angelia, came over Friday afternoon to help me style my wigs. Angelia, is a former co-worker from way back to my APAC Customer Service days. She has a family member for whom she has styled wigs for many, many years and had offered to help me. As she was working her magic on me, I told her that I never envisioned when we first met back in 1996 that she would be styling wigs for me. I guess that is what makes life such an adventure. You never know what the future holds. I also suggested she add "cranial prosthesis technician" to her resume. People may think she performs brain surgery! Those of us in human resources feel that way sometimes anyway.

Under Angelia's expertise, the six wigs transformed from offering a pelt-like appearance to providing a chic and stylish look for the occasions when I am inclined to wear hair. I have been quite comfortable with hats, and yesterday I was running around with just a Wiliam and Mary baseball cap. I do have a very fine fringe of hair left. Dr. P. said these were "keepers," so I guess they are there for the long haul. When I am wearing a hat, you can see hair peeking out, so it is fairly natural looking. No matter. I don't cringe when I look in the mirror anymore. I took Max's words to heart to look more deeply, but also, like most change, it just takes a little while to adapt to something new.

Speaking of which, the kids have all adapted too. We celebrated Lance's third birthday with a small party at Pizza Hut last Tuesday night. Cole and Clay were encouraging me to show their friends my hair, and I obliged. The world did not stop. Cole informed me that he has gotten used to my hair now, and when I ask Lance if he likes me hair, he had been saying, "No, not yet." Now he answers, "Yes." They all like to reach over and pat my head. Bo made some comment about having six women to choose from now... Seven if we include the blonde wig, but that one is for when I want two men to choose from!

Pending Testing Results Are All Back

2006-06-29T20:55:00.000-05:00

Well, I had my third chemo treatment this afternoon. The movie of choice today was "Soapdish", a comedy from the early 90's that neither Bo nor I had seen before. It was a parody on soap operas, and it appealed to my sense of humor, and Bo enjoyed it too. Three stars.

I actually had an appointment with the oncologist today, so she came into my treatment room for the exam. The genetic test results had come back. About 10% of breast (and ovarian) cancers are hereditary which means that a person has inherited a mutated gene from one or both parents. (Actually half of all women who have the mutation inherited the risk from their fathers, which sounds surprising, but from a genetics perspective makes total sense since half of the genetic material comes from the father.) It doesn't mean that the person has inherited cancer, it means the person has inherited a higher risk of developing that particular type of cancer. (Women with a BRCA mutation have a 33 - 50% risk of developing breast cancer by age 50 and a 56 - 87% risk by age 70.) Testing negative doesn't mean there is no risk, just that there is no increased risk, based on family history. A simple blood test analyzes two specific genes, BRCA1 and BRCA2 for the genetic changes or mutations. These two genes are known to help prevent breast and ovarian cancers by suppressing abnormal cell growth, and the mutation inhibits the genes from doing their intended duties.

I must pause here and give credit to the pamphlet "Beyond Risk to Options" published by Myriad Genetic Laborotories for the information contained in the above paragraph.

In my case, my grandmother and mother were diagnosed with breast cancer at the age of 40. I had just turned 41. We all had cancer in our right breasts. In a way, I had always thought of breast cancer as my fate. (The metaphysical implications of all this are quite intriguing...) So, I was stunned to learn today that I did not have the known genetic marker for either the BRAC1 or BRAC2 genes. Whoa! Wait! What? You mean? Huh?????

Okay, so what does that mean? Well, from a treatment standpoint, I now have a decision to make. Had the test come back positive, the recommended course of action would have been a double mastectomy and ovary removal. Now, it is more ambiguous. I will follow up with my doctors and will research data myself to better understand risk of recurrence in the other breast and the probability of ovarian cancer following a pre-menopausal breast cancer diagnosis. As my friend, Angelia, put it tonight, "The good news is that at least you have a decision now." Ahhh, yes, but I don't like making decisions. Decisions can be soooo hard to make sometimes. Just ask Bo what Friday nights at our house are like when we are trying to decide where to go out to eat!

The other good news is that I can stop beating myself up for not being proactive and having the genetic testing done earlier when preventative action (prophylactic breast removal) could have been taken prior to getting cancer. I have done a really good job of not looking back and instead focusing on the present and what needs to be done to ensure a healthy future. Nonetheless, I am human, and I have put some blame on myself for not having been more of an advocate for my own health when it came to breast cancer. And as my yoga instructor, Joy, pointed out this evening, tongue-in cheek, of course, "Why miss a good chance to flog yourself?" My thoughts exactly! You will be happy to know I stopped flogging myself on that particular issue at 3:30 p.m. today. (Ever since this experience began, I have really done a good job of reducing the self-flagellation in general, too.) Had I had the genetic testing, it would have shown I didn't have the mutations, so I would not have had my breasts removed, and I would still be where I am today (metaphysics aside). It may have even given me a false sense of security about it that may have reduced my own vigilance.

Now what is very interesting is that I did test positive for an unidentified mutation on the BRCA2 gene that has only been found in 19 other families among all the people tested by Myriad Labs. I am an anomoly! I am special. I am a special anomoly. (Dr. P. asked me if I had any mystery ancestry in my genes because 48% of those 19 families were of Latin American or Caribbean descent... Since I am from Massachusetts with French Canadian ancestry, I doubt the possibility of skeletons in this family closet.) Dr. P. couldn't offer any other information on this, but did say it doesn't necessarily mean that I was at an increased risk for breast or ovarian cancer; they just don't know what the relevance is at this point. For that reason, the mutation is being studied, and Myriad offered to test my Dad for free, if he was willing, so they would have more data. I spoke to Dad tonight, and he is going to have it done. The Myriad pamphlet states, "It is also important to note that while BRCA mutations are associated with most hereditary breast and ovarian cancers, there are other genetic causes of these cancers, too. Some are known, some have yet to be discovered." So I guess I will research the other genetic links and use what I learn to help me when I am at the point of making the DECISION.

The second test we had been awaiting results was the FSH (fish) test which indicates whether or not the cancer is the aggressive type or not. An initial test came back earlier which showed I did not have the aggressive type, but Dr. P. wanted to confirm that result with a more accurate test. The outcome of the test determines if the patient is placed on Herceptin, a drug that has shown very promising results in women with the aggressive form of cancer. The great news is that I again tested negative for the aggressive form. Woo hoo!

The next piece of positive news came when Dr. P. actually felt the tumor. She believes it feels softer and is shrinking. I thought so too, but I have been feeling it every day, so the changes are less obvious to me. I had told Bo I thought it was smaller and softer, but I wasn't sure if that was wishful thinking on my part or not. Some women respond so well to the chemo that the tumor actually disappears. It would appear that mine is responding well after the first two treatments, and Dr. P. said the surgical outcome is much better when this occurs. Big sigh of relief. She is going to schedule me for more imaging (either ultrasound or MRI) following the next treatment. If those results confirm that the tumor is shrinking, then I will continue with chemo for four more treatments before I have surgery.

So there you have it. Since the time of initial diagnosis when the lack of information painted a potentially grim picture, everything has come back very positive. I attribute that to a few things, but especially to all of the love, prayers, healing thoughts, and positive energy that is coming my way from all over the country from family, friends, clients, and complete strangers in churches and prayer circles from Florida to Massachusetts. My friend, Linda, has advised me that she has her entire church in Georgia praying for me, and knowing Linda's, ahhh... persuasiveness, I believe this. My friend, Judy, has also assured me I now have the Jewish connection taken care of. Thank you for all helping me heal, and in in ways beyond just the physical. But those reflections are best saved for another posting.

Last Blog About Hair, I Hope

2006-06-26T20:14:00.000-05:00

Well, apparently I am way more computer savvy than I give myself credit for. (not really) I was able to get the internet access back up and running. Apparently the router wasn't fried... at least not completely. My VOIP business phone lines still aren't working though. After he spent two hours on the phone with me, a very nice Customer Service Rep from Vonage, named Anthony (the patron saint for lost causes, by the way), finally acknowledged that my situation had him totally stumped and that he was putting a new router in the mail to me. It is a proven fact. I have that effect on computers and all things related. Mother Nature may have contributed this time though with the lightning. St. Anthony wasn't sure about that.

So now I can blog again, and I will pick up where I left off. I graduated from Phase II Academy on Friday and am now certified to coach people to achieve their dreams of owning their own businesses. Right before the graduation ceremony, Max, my classmate, (the big gruff old teddy bear of a guy) handed out baseball caps to the class that had been purchased by the corporate office of The Entrepreneur Source (TES) upon his suggestion. Ours was the 46th class to go through the Academy, so the front of the caps said "46 Rocks." On the side of each cap, embroidered in pink letters, were my initials MBG. I was so touched, it brought tears to my eyes. Much hugging and kissing commenced. It was a special end to the whole TES training experience which began several months ago under very different circumstances for me. Three months ago when I entered Phase I training and first embarked upon this new business venture, life was good, and I worried about everything. Now life is still good, and I worry about almost nothing.

I spent the night with my friend Ann and her family in Hartford. I was a little nervous about exposing Ann's children (Seth, three, and Brianna, five) to my look, especially since they had seen me on Sunday when I was still sporting my usual over abundance of hair. Ann assured me that it was fine. We made a game of it though. The hats and wigs came out, and we all tried them on. Even Ann's husband, Brett, tried on a wig. Brianna, who I believe was coached a little by Ann, told me that my new hairstyle was beautiful. Even if she was coached, her sweet little face and beaming, precious smile conveyed the truth. I am beautiful to her because she loves me for me. The hair is MY issue, I know. I really didn't anticipate that it would be such a big issue for me. In a way, I derive more of my identity from my hair than I do my breasts... Well, we won't go there, and it's probably good for a few sessions on psychotherapists' couch if I were so inclined, but instead, I will just get over it. Actually, as each day passes, I do become less self-conscious about it.

I drove home Saturday. It took about ten hours, but I enjoyed the drive. I caught up on phone calls to friends and family. I think I broke the law in New Jersey because I didn't have an ear piece for my cell phone, but I felt like I had company along for most of the trip. I was very happy to see the Bo and the boys after being gone for a week, and it was a great feeling to put the suitcase away and know that I will not have to do any business travel again until next year.

Okay, I know I said I was getting over the hair thing, but you do want to know what the boys thought when they first saw me, right? Of course you know what Bo said. He told me I was beautiful and sexier than ever. Luke, our dog, displayed his usual affectionate greeting, whimpering and wagging his tail so much his whole body shakes. Cole looked the other way and asked me to go put on one of the wigs. Lance just kind of stared. Later he told me that he didn't like my hair, and on another occasion, he wouldn't stop crying until I put my hat back on my head (he needed a nap). Clay told me that I looked great. Since then, we explained to Cole that it is a good thing my hair is falling out because it means the medicine is working. He was playing with his gameboy at the time, but we saw signs that made us think the message got through anyway. Lance still doesn't like it, but he doesn't cry any more.

I have been walking around the house without a hat or wig, and we are all getting used to it together. I will be glad when my hair is completely gone because I just shed everywhere. Charity, my classmate, and I looked like chimpanzees last week during training, as she groomed me by pulling loose hair off of my clothes. Yesterday when I got in the shower, I told Clay I was trying to get some more of the loose hair to come out. Clay announced to Bo, "Mom's getting balder." The image that comes to my mind when stepping out of the shower is of earlier times, as in the neantherdal period. Wet hair is plastered everywhere! Luke and I had an ongoing competition for years over who shed more. Cole proclaimed me the victor this week. We've declared a truce for the next several months, but I will be ready to compete again soon.

So, there you have it. I promise I have come to the end of my hair tales, unless something really noteworthy occurs and I am compelled to share it.

Lightning Strike Fried My Router

2006-06-26T08:40:00.000-05:00

Lightning struck a tree in our backyard on Friday afternoon. It apparently took out my router, modem or both, and I am unable to access the internet. Even though I managed to get the wireless network set up originally, I fear I am in over my head now. I called someone from my networking group who owns a computer company, but he may not be able to come out until Tuesday or Wednesday. I am typing this from a friend's office and must let him get back to work. Please look for more updates once my computer is up and running again.

I Left My Hair at the Cornucopia

2006-06-23T05:03:00.000-05:00

It is another beautiful morning in Connecticut, and as I sit in my little attic room of the Cornucopia, I can see an apricot colored sun rising in the sky over the trees. I have been awake since 5:30 a.m. I am not sure what exactly caused me to evolve from a night owl to an early bird over the last month or so, but it seems to be more consistent with what nature has intended. I believe our bodies speak to us and tell us what they need in terms of rest and nutrition and activity, but most of the time, most of us just aren't listening. I have begun listening. Our bodies truly are temples since they house our spirits, and our spirits make each of us who we are.

I have had to remind myself of that this week as I watched my beautiful, thick, head of hair diminish over the last several days to a thin,wispy, inadequate covering of stray locks. It really wasn't my desire or plan to ever see my naked head, but then life has a really great way of just throwing things our way, and we deal. So I am dealing, and in the big scheme of things, it really isn't a big deal. I was telling my classmates that the hardest part has been when I look in the mirror and I don't recognize the person looking back. One of them, Max, a big gruff teddy bear of a guy, offered , "Well then, you just aren't looking deep enough." He's right, of course.

I guess the other hard part has been that the hair loss has been the first outward physical sign of the cancer. Before you couldn't look at me and tell I had cancer. Now I feel like a walking billboard for chemo treatments. It will be interesting to see how or if people react differently to me. Will they feel sorry for me? Will they avoid me or avoid the subject? Probably all of the above at some point over the next few months.

I will be departing the Cornucupia soon and heading off for my last day of training. It has been a really good week. I have reconnected with my classmates and gotten a renewed sense of commitment to my business and helping others become self-sufficient through business ownership. I am ready to get back home to the family, but first, another day of learning awaits, and I must go pick out a hat to wear.

More Great Test Results

2006-06-20T04:50:00.000-05:00

The wireless internet access at the Cornucopia at Oldfield in Southbury, Connecticut is working just fine up in my nice cozy, little attic room. I arrived late Sunday night at this bed and breakfast after picking up my friend, Charity, at Bradley Field in Hartford. As I was hanging up my clothes in the closet, I noticed that the entire back wall of the closet contained shelves filled with book and materials on breasts, more specifically, breast feeding, but nonetheless, breasts. The owner was formerly a lactation consultant for 21 years, so breasts were her business. It was kind of ironic, and I guess served as a good reminder that I have three healthy sons, all of whom I was able to nourish as infants through breast feeding. Breasts are a beautiful thing.

Both the imaging center and the oncologist's office called me Monday to let me know the biopsy results. I can't say enough about how great the medical staff has been everywhere in terms of reaching out to me. As soon as tests results are accessible, they have been in touch with me so I haven't had to keep calling. The biopsy results on the left side came back fine, as I had suspected and of course, hoped. Nonetheless, it is a huge psychological boost to have confirmation that the cancer is contained to the right side.

Remember my multi gate acquisition aka the MUGA? Well, it showed that my heart is operating at 73%, and normal would be about 60%, so I am in awesome shape to withstand the chemo. Must have been all that walking on the treadmill...

I am still feeling so good physically. I have been listening to my hypnosis tape every night before I go to sleep, and it reinforces the message about being healthy and feeling healthy, so apparently my subconscious is listening to that part. My subconscious, however, has ignored the healthy hair message. My hair is coming out a lot less gracefully now. If I pull a comb through my hair, the result is as if I used thinning shears. I believe I have probably lost what would be a head's worth of hair on most people, but my hair is so thick, it isn't really noticeable yet.

Well, it is a beautiful day in Connecticut, and I am looking forward to all the day has to offer. May yours be the same.

Still Feeling Fine, but the Hair...

2006-06-17T10:36:00.000-05:00

I am two days into my second chemo treatment, and I feel really good. In fact, if I hadn't personally experienced three hours worth of toxic chemicals dripping into my body, I wouldn't know it from how I feel. Now how I look, specifically in the the hair category, well that's a different story. I had heard it would start falling out about two weeks after my first treatment, and sure enough, it's starting to go, but quite gracefully so far. If just run my fingers through my hair, several strands come out each time. But you know what? It's okay because that means the chemo is working. Chemo works by killing fast growing cells, which cancer cells are. Our bodies, however, have other rapidly dividing cells, like our hair, that aren't immune to the effects of the chemo. While some chemo drugs do not cause hair loss, the ones they administer to breast cancer patients, pretty much universally do.

Luckily, I had my appointment yesterday, with the Hat Trader. Suzy is a wonderful woman. She had breast cancer several years ago and now collects hats, wigs, and scarves to loan out to women undergoing chemotherapy. She had quite a collection, and I left with four wigs and about 20 hats and scarves. My sister-in-law, JoLynn, accompanied me, and we had a lot of fun trying on the hats. They were very helpful in determining my best hat look. It appears that wide brim is very flattering, while the turban look is most definitely out. JoLynn is planning on having a hat party for me in July. Everyone wears a hat and brings a hat.

Before scooting home for my date night with Bo, JoLynn and I went by Fantastic Sam's so that I could get my hair cut again. I got it cut very short several weeks ago, but I went ahead and got it cut super short. That will make it easier as it thins. Bo will appreciate the drains not clogging up, and for some reason, short strands falling out aren't quite as dramatic as longer short strands falling out.... The sytlist was great, and her name was Angel. I took that as a very positive sign.

We also went by the doctor's office for my shot of Neulasta, the white blood cell promoting drug. The nurse checked for my biopsy results from the left breast, but they weren't in the computer yet. I should know something on Monday. At this point, it won't have any impact on the treatment plan, but it sure would be reassuring to know that the cancer is confined to the right side.

I am feeling well enough to go to Phase II training for my new business next week. Not to mention, for the first time in a month, I have no medical appointments or procedures scheduled for next week. That's progress! I spent nearly two weeks with the seven other participants earlier in the year at Phase I training, so I will be among friends. If I don't have any postings next week, it will only be because of inaccessbility to the internet. I am sharing a suite in a bed and breakfast with a classmate, Charity. It will be very pleasant, but I am not sure about the computer access there.

My friend, Betty, drove to Williamsburg from Richmond this afternoon, and we ate lunch outside at my favorite restaurant in Colonial Williamsburg, the Trellis. It was a beautiful day, and we enjoyed strolling through through the colonial area. We have been doing that together for the last 20 years that we have been friends. She said she likes my new style better than any haircut she has ever seen on me! Well that is good, because it sure won't take long to achieve this look again once my hair starts coming back in later this year!

I have to admit that it is very disconcerting to watch your hair start to fall out. While I wouldn't say I have been in a state of denial about my situation, the hair loss certainly reinforces the reality of it, even more than the many medical procedures I have been undergoing. Well, as I mentioned earlier, it means the chemo is working, and my hair will be back.

A Day of Healing Activities

2006-06-15T20:30:00.000-05:00

My first appointment of the day was with Andi, the hypnotist. This was my first experience being hypnotized, which is really just being put into a deep state of relaxation (alpha and theta brain frequency.) When you are in this state, you are better able to communicate with your subconscious mind about important things like healing and feeling good. She walked me through the whole process of getting my body into a relaxed state, and taped the session. I have a half hour tape to listen to each day. I will let you know how it ends up working for me, but so far, I am pleased.

My second appointment of the day was for my second chemo treatment. I have a total of eight, so two down and six to go. Woo hoo!!! The first four treatments involve two different drugs, adriomycin and cytoxin and will occur every two weeks. The last four treatments will be taxotere, and I will receive that treatment every three weeks. (My spelling of the drugs, and possibly even other words, may be slightly off, but I haven't been able to figure out how to use spell check on this blog site. Oh well. Part of my personal therapy program has been to stop worrying about everything being perfect all of the time. I hope you can accept my typos and whatever other ways my rejection of perfection manifests itself.)

This particular protocol of drugs and timing has been found to be most effective in treating my type of cancer, based on lots and lots of historical data. I am lucky to have breast cancer in the year 2006 because there is so much more data available, and there have been tremendous advances. It is not a one size fits all approach to treating breast cancer. The treatment is really customized to the type of breast cancer a woman has and other individual factors at play.

Again, Bo and I were there for over three hours. That's how long it takes for the various I.V. bags to drip. It really is a good excuse to sit though, since I actually don't have a choice. That's not a bad thing since being a Mom of three young boys limits my sitting time anyway. We watched another movie. This time it was Austin Powers, which we hadn't seen in years. I am definitely gravitating toward comedies these days. Call me an intellectual/artistic lightweight in my movie going habits, but I've never been much for the intense drama and conflict type films anyway. These days, especially, I really just want to laugh and feel good.

I am hoping the side effects of this treatment will be like the last treatment - very minimal. It's been almost ten hours since it begand, and so far so good. I receive anti-nausea medicine in the I.V. Additionally, I take anti-nausea pills for the first three days following the treatment. Last time I didn't have much of an appetite, but I never felt sick. I also felt just the slightest bit tired, but I think tired for me, is normal for most people, so I just started to go to bed a little earlier each night, like normal people.

My white blood cell count was very high, due to the shot of Neulasta I receive every two weeks. A high white blood cell count is a good thing because it means my immune system is functioning well. That meant I got to eat raw unpeeled fruit and vegetables today without worrying about succumbing to pesky parasites. I ate a whole quart of strawberries tonight!

My last structured healing activity today was yoga. Unlike the last time, the blackboard's announcement of beginning yoga actually corresponded to the level of the class. Last week I was supposed to be in beginning yoga but all of the advanced students showed up, and I unknowingly participated in an advanced class. What a difference between the two classes. Tonight I actually left feeling very relaxed. The instructor was a woman named Joy, and I really liked her. She was very helpful as I learned the positions and was very soothing. She actually works one-on-one doing yoga with cancer patients and knows the value it can provide.

Joy also has a family background of breast cancer. Her mother was also diagnosed pre-menopausal at the age of 42. Joy is 44. I asked her what she was doing in terms of "surveillance", and she said her doctor has her going for mammograms every six months. I was going every year. The mammogram I had on March 21, 2006 showed no abnormalities. I found the tumor myself in early May and was diagnosed on May 15, 2006, less than two months later, with breast cancer. The tumor was there in March. It may have even been there last year when I had my mammogram. The mammogram didn't detect it. I have learned a lot since then, and I will write about that at another time, but I have taken it upon myself to help educate women that for many of us, mammograms just don't cut it.

A Day of Tropical Storms and More Tests

2006-06-14T21:34:00.000-05:00

It was another beautiful day in Williamsburg, just very, very wet. We received the remnants of Alberto during the night and throughout the day.

Today I went for yet another scan. This one was called a MUGA, and for all of us medical novices, that is simply the Multiple Gated Acquisition. Oh yes, that test, of course, the multiple gated acquisition. Actually it can be described best as a heart efficiency test. It required more radioactive "stuff" to be injected into my veins. (The syringe in the lead box gave it away, not to mention those darling little yellow radioactive signs everywhere again.) Like the other scanning machines, this too involved a very large piece equipment, but it was quiet, and efficient, and once again did not require me to disrobe. It captured images of red blood cells circulating about my heart. Some of the chemo drugs can damage the heart muscle, and these scans will monitor the condition of my heart.

Then it was a race across town (while eating lunch in the car) for my next scheduled appearance which happened to be at the imaging center. I had an ultrasound on Monday to locate the "areas of suspicion" detected in the MRI. Today, a biopsy of the areas was done. Dr. D., the radiologist, declared one to be a cyst. She took core biopsies of the other one, and I should have the results by the end of the week. I am confident that it is not cancer. I asked her how many women get cancer on both sides, and she indicated about 5%. It is more common with lobular cancer, and I have infiltrating ductile cancer.

The staff at the imaging center has been really wonderful. Dr. D. has patiently answered my many questions and concerns and has been so thorough with my care. The techs have all been so warm and concerned and attentive. They have literally held my hand, supplied me with tissues, consoled me, and encouraged me. One of them reminded me that if I end up having a double mastectomy, that I will never have to submit to another mammogram! Hmmm... I never quite thought about it that way, but you gotta keep focusing on the positive. I told them I would come back and visit anyway.

Bryan (my sister's ex-husband but more like my big brother), left today after having spent five days with us. We enjoyed the visit, and I think he went home feeling very relieved to see that I really am doing well, and that it is pretty much business as usual at the Gibson household. We welcome any and all visitors, but I need to let you know, Bryan cleaned windows while he was here. The bar has been set, but it can be raised.

About the Rest of the Family

2006-06-11T20:18:00.000-05:00

Facing a life threatening illness certainly has a profound impact on the individual, but it also affects the entire family (and everyone close to the person). Many people have been asking me how Bo and the kids are doing so I thought I would write about someone other than myself for a refreshing change.

It will surprise no one that Bo, who has always been a pillar of strength for me, who has supported everything I have ever done or wanted to do, who has loved everything little thing about me, imperfections and all, is securing his nomination for sainthood. He was holding my hand when the radioligist told me I had cancer, and I know he will hold my hand forever. He has accompanied me to every medical appointment or procedure and will continue to do so. He wears a pink breast cancer awareness wristband that he plans to "sport" until I am cancer free. When I went for my first chemo treatment, he confidently announced, "This is the beginning of the end of the cancer." He has said that our first and only priority this year is to get me well. (Hmmm... I wonder if that means he will forego deerhunting this fall.)

Bo came into my life, via my front yard and wielding a weedeater, during the last year of my Mom's life. I didn't think I needed anyone, we "independent" women never think we do, but Someone knew better. Bo helped me in so many ways before, during, and after my Mom's own courageous struggle with breast cancer. I was grateful that my Mom was able to see me genuinely happy for probably the first time in my entire life, and that she died knowing that her daughter was loved deeply by a very good and kind man. I believed at the time that Bo was heaven sent, and I know it now to be true. I cannot imagine being on this journey without him, but the beautiful thing is, I don't have to imagine it. In sickness and in health, Bo, is by my side.

Bo is holding up very well. We talk about everything together, and he also has close friends with whom he is able to share his feelings. I have encouraged him to maintain all his activities and to continue plans to go bear hunting next spring in Alberta, Canada. One of the many positive things that will come from this cancer experience will be an even stronger marriage, and for that, I am grateful.

We told Clay (6) and Cole (7) that I have breast cancer and that I will get better. Lance (3 later this month) doesn't understand what is happening but is definitely aware of the changed dynamics. He has been left with family and friends a lot during the last few weeks while Bo and I have scurried from one medical appointment to another. He has become quite clingy and will not leave my side when he has any choice in the matter.

Cole's biggest concern is that I am going to lose my hair. For some reason, he doesn't want that to happen even though I told him that Mom and Dad would now match. Clay pulled out his guitar one evening, and while casually seated on the bed, strummed a song for me. It had several lines to it, but all I remember is "My Mom has breast cancer, and her hair is going to fall out." If their most dramatic memory from the upcoming year is seeing my bare head, I will be so happy!

A new friend, Peggy, a breast cancer survivor with whom a client put me in touch, sent a wig and an assortment of bandanas to me last week. It was a nice cranial prosthesis, but too light for my coloring. When Bo put it on, Lance walked into the kitchen and did a double take, and Luke, our white lab, went into defensive mode. It was the first time I had ever really seen Bo with hair, and aside from the surfer dude image (or maybe because of the surfer dude image), it looked way better on him than me! Truth be told, it was actually kind of cute and sexy! Clay and Lance both tried it on, so I was able to get a glimpse of what a little Gibson girl may have looked like. Cole, as much as we cajoled, refused to submit to the wig wearing antics, but we all laughed a lot that morning. I have pictures!

So all in all, the entire Gibson family is doing really well. Love and laughter will see us through.

Another Doctor's Appointment

2006-06-07T20:43:00.000-05:00

Today, Bo and I met another member of my recently assembled medical team, the radiation oncologist. Dr. G. was quite a treat to meet, and even though she won't be my regular radiation oncologist (he was out of the office this week), she reviewed my history and discussed the proposed treatment with me. There are still several missing pieces of the puzzle with my situation, so even though chemo has begun, some of the proposed treatment is subject to change based on test results. In that regard, she didn't tell me anything I hadn't heard before, but I will summarize the main points below.

What we do know:

I have a clinical diagnosis of Stage IIB breast cancer - this is still considered early stages of breast cancer. It means my tumor is between 2 -5 centimeters with metastatic involvement of ipsilateral (same side as the breast cancer) axillary lymph nodes (moveable) and no distant metastasis. In my initial biopsy, only one swollen lymph node was found, and it did turn out to be cancerous.

The pathology staging of the cancer can only be done after surgery when the lymph nodes are removed and a biopsy completed, but the CT/PET scan did not indicate lymph node involvement, so I am hopeful that it didn't spread beyond that one that showed up in the initial biopsy. (and yes, one of my questions is - if it showed up in the biopsy with cancer, why didn't it show up in the CT/PET scan? Donna, the nurse practicioner told me on Monday that the lymph node is so small, the fine needle aspiration that was performed during the biopsy may have removed all of the cancer cells.... That question is still on my list for the doctor though.)

The tumor is estrogen receptor positive, which means it is more like normal breast tissue, and that, I am told, is a good thing. I believe this means it should be more responsive to treatment. It would be even better if it were progesterone receptor positive also, and it isn't, but one out of two isn't bad.

What we don't know and are waiting to find out:

The initial pathology results showed the tumor was HER2/NEU negative, but the oncologist requested a second, more accurate test, called a FISH test, to confirm this finding. We want the initial findings confirmed because HER2/NEU negative means it is a less agressive form of cancer. I ask for this test result everytime I am on the phone with someone who has access to my records, but so far, the results are still pending.

Due to my family history (both my grandmother and mother were also diagnosed with breast cancer at the age of 40), there is a strong likelihood that I am genetically predisposed to breast cancer. They are currently doing the genetic testing to determine if this is the case. So, why does that matter now that I actually have it? Well, if I do have the gene, the most aggressive form of treatment for me would include, in addition to a mastectomy on the right side where the cancer is, a prophylactic removal of the left breast. It would also include prophylactic removal of my ovaries. I have a ton of questions on that, so more to come. They told me it would take a couple of weeks to get those results back.

The ultrasound and biopsy of the "area of suspicion" in the left breast that showed up in last week's MRI is scheduled for this coming Monday. I am confident that the results will be favorable and that we are just dealing with the one tumor on the right side, but we will know for sure by the middle of next week.

Dr. G. discussed the radiation process with us. It is generally done four weeks after surgical recovery. I will need to go five days a week for 6 to 6 1/2 weeks. The side effects are pretty much limited to fatigue. In the past, radiation was performed on women who had four or more lymph nodes involved, but two very large clinical studies showed a benefit to post-mastectomy radiation in women with any lymph node involvement. I am all for that then!

It has now been almost a week since my initial chemo treatment, and I am happy to report that I still feel pretty darn good and mostly "normal". I actually went to my first ever yoga class tonight. My instructor, Joseph, is 51 and claims to have the flexibility of his 18 year old daughter. By some of the moves he was doing, I believe him. It was supposed to be a beginner's class - at least that is what the chalkboard said. I felt like I kept up pretty well, but I kept waiting for relaxation mode to kick in. All that stretching and bending and breathing was hard work! After class, Joseph confessed that he customizes the class to his audience, and tonight, all of his advanced students showed up! I will probably be feeling it in the morning!

More Tests to Come

2006-06-05T21:16:00.000-05:00

Bo and I drove down to Newport News today to meet with Donna, the nurse practicioner, so that she could take another look at the porta-cath site and to review last week's test results with us. Unfortunately, Dr. H. was tied up in a meeting, and Donna wasn't able to answer some of my questions about the MRI and PET/CT scan. Overall, of course, the news is very positive because the PET/CT scan didn't detect any metasteses and also didn't detect lymph node involvement. The only ambiguous finding was the suspicious area in the left breast, and Donna was going to discuss that with Dr. H. and get back to me. She called this afternoon and said that Dr. H. wants to go ahead and have biopsy done on the left side so that we know exactly what we are dealing with. Amen! Dr. H. is very thorough, and I really appreciate that about him. So, I am scheduled for my ultrasound and another biopsy next week. In the meantime, I keep adding questions to my list.

I also met with a volunteer representative, Terry, from the Look Good...Feel Better Program. (Terry is also in my networking group, and she had an experience a couple years ago with a pre-cancerous tumor in her breast.) This is a program sponsored by the American Cancer Society to help women with their appearance during chemo treatment. I received a large bag of makeup and lots of tips on how to tie scarves. Terry was doing all these little neat tricks behind her back, creating beautiful rosettes, and weaving in color coordinated scarfs among the folds. I told Terry to just plan on coming to my house each morning because I have never had scarf tying aptitude skills and doubt I will get them now. Perhaps Bo can learn... or perhaps I will just use headwear that only requires one action - place on head. I was also able to try on a variety of wigs, and I can tell you if there ever was a doubt, I was not meant to be a blonde.

I set up an appointment with a woman known as "The Hat Trader." She lives inWilliamsburg and is a breast cancer survivor. She collects hats, scarves, wigs, etc. and loans them to women undergoing chemotherapy. She and her husband depart tomorrow on a cruise to Alaska, so I won't be able to see her until a week from Friday, but I should still have hair by then. If not, my great friends, the Todisco's, sent me a NYPD cap in the mail today. It may not have rosettes, but it's got attitude!

Great News!!!

2006-06-02T20:48:00.000-05:00

Today I received the best news I have heard in the last three weeks since this medical drama began for me. The MRI, CT, and PET scan results came back today. One of the nurse practicioners from the surgeon's office, Donna, was checking the computer throughout the day for me, and mercifully called this afternoon so that I wouldn't have to wonder all weekend. The MRI, of course, confirmed cancer in the right breast. There was a area of suspician on the left side that may or may not be cancer. They had performed a biopsy of several sites and a lymph node on the left side two weeks ago and everything came back normal, so it may very well be nothing. If it is cancer, the chemo will take care of it.

The absolute best news was that the CT and PET scans came back fine which means the cancer has not spread to other organs. Hallelujah! I literally cried with joy and immediately called my Dad and brothers and sister (and as many other friends and family members I could fit in this evening) to share the good news. Now, if you had told me a month ago that I would be relieved to only have breast cancer with lymph node involvement, I would have called you all kinds of names. Now, when put in perspective, compared to what I could be dealing with, I am thrilled! Thanks to all of you who have kept me in your thoughts and prayers during this time, and please keep them coming. I know what I have is very serious, and I am facing five months of chemo, then surgery, and then radiation, but this news makes the battle easier. I will meet with Donna on Monday to discuss the results in detail.

On a less medical, more.... hmmm.... well, new-agey kind of note... I had a consultation with a hypnotist today. Her name is Andi, and I met her in my networking group or otherwise, I probably wouldn't have even thought of hypnosis. Even if I had thought of it, I wouldn't have known what to do with the thought, but there she was, and I don't believe in accidental encounters. Andi gave me a brief history of hypnosis, and "new-agey", besides not even being a word, is also not an accurate descriptor. Hypnosis actually has been around for more than a hundred years and was first recognized as being practiced by a guy named Mesmer (as in mesmerized). It has been recognized as having a legitimate medical application but has come in and out of accepted medical use for a variety of reasons, none related to the efficacy of hypnosis. It is beginning to come back into favor.

Now those of you who know me well probably don't have a hard time believing that I just cannot relax. (Although, you may have a hard time believing that I am finally admitting it and am committed to doing something about it!) Well, I have been very anxious lately. The anxiety began earlier this year with my new business, but it has now obviously been replaced with a different anxiety. I figure I have enough foreign "stuff" entering my body these days, so if I can learn to relax naturally, then I don't have to rely on more chemicals. Andi needs a release from my doctor in order to work with me because of my medical condition, but I don't think that will be a problem. My surgeon, Dr. H, has a pretty holistic approach to healing. Andi is going to be able to help me sleep better, meditate, use visualization techniques, and just plain relax. For those of you have come to know and love, or just plain endure, my driven personality, I promise a new and improved me; although, I am not sure what that looks like yet.

By the way, I have not experienced any side effects from the chemo yet that I can tell, and I feel "normal." I have been so out of sorts lately, that I am not exactly sure what "normal" feels like anymore, but I do feel the same way today that I felt before the chemo, so that's normal for now. When I went to receive my shot of Neulasta this afternoon, the nurse, Olivia, told me I could expect my hair to fall out in the next two to three weeks, so I need to get a move on with finding my "cranial prosthesis." I, too, was blissfully unaware of this medical terminology until recently, but cranial prosthesis is a highly techical medical term that when written on a prescription pad and signed by a member of the medical community, may compel insurance companies to pay for a wig.

One last thing before I sign off, the shot of Neulasta is administered 24 hours after the chemo is given and promotes growth of white blood cells. That is a good thing - especially since it represents the last time I am poked, probed, or pricked this week! Yes, a very good thing.

First Real Posting

2006-06-01T20:34:00.000-05:00

This posting will be longer than I plan in the future, just because there was a lot of activity this week, and I am just now getting around to writing everything out.

I worked on Tuesday and managed to squeeze in a radical new hair cut. My hair is now the shortest it has been in many years. Bo says it makes me look younger, but you know, Bo. He always says the right thing. I cut it in anticipation of losing it by the end of the month. My sister-in-law, JoLynn, is going to look for wigs with me next week. I always wondered what it was like to be a blonde... but I am sure my more traditional side will win out, and dark brunette, I will remain.

Wednesday, I ended up at an impromptu visit with the nurse practicioner, Anna, at the surgeon's office in Newport News. They surgically implanted the porta-cath in my left chest (for receiving chemo treatments, taking blood, giving medication, etc.) last Friday. It had grown tender and swollen overnight, and sure enough, I had a hematoma where blood had leaked into the cavity. They just drew off the blood and sent me on my way. (Anna was just diagnosed with breast cancer herself about six weeks ago and is also undergoing chemo. She is very upbeat and very inspirational.)

It was back to Williamsburg where I experienced my first MRI. They scanned both breasts - it is part of the staging tests. I ask lots of questions and got a brief physics lesson in the process. Basically, what I learned is that this big monstrous piece of claustrophobic equipment that emits very louds noises for extended periods of time somehow moves the hydrogen around in my body in order to give the radiologist a good image of the inside of my breasts. Test results will be in early next week.

I also went to the oncologist's office for my "chemo training." On the way to that appointment, I stopped to grab a sandwich at Subway, and honest to God, this really happened. I asked for a turkey sub on wheat with all the vegetables they could possibly put on it. The young guy behind the counter said, "Oh, so you are trying to prevent cancer?" I paused, trying to find just the right response, and I finally said, "No, it's too late for that. Now, I am just trying to beat it!" I have decided in the future not to blurt that information out to strangers because that poor guy probably kicked himself all day, and that is absolutely not what I intended - really! I bet he never makes that comment again though...

So, back to chemo training. The nurse, Gloria, spent an hour with me going over the possible side effects. I decided to consider that information in the same way I consider the one page of side effects you get from the pharmacist whenever you get a prescription filled. It happens to some people but not all people, and I intend to feel as good as I possibly can. Besides, the drugs they give you for side effects now have come a long way. The only disappointing news was that I shouldn't eat any raw fruit or vegetables that can't be peeled. What? In the summer - season of bounty? They don't want me to get parasites, and when you put it that way, I don't either, so what's five months of eating cooked unpeelable fruits and veggies? No biggie. Now I probably won't be back to Subway any time soon either for that turkey and veggie sub.

Today, I went down to the hospital in Hampton for a CT scan and PET scan. For the CT scan I had to drink barium, a big styrofoam cup of barium. I told the receptionist it would taste better if mixed in a blender with ice and presented with a little umbrella upon serving. She laughed, but I don't believe my suggestion will go anywhere. I asked if they adjust for body size, and they actually don't which doesn't make sense to me. Next time, I am requesting a smaller cup, since I am down to about 112 pounds and don't think it is good for me to absorb the same amount of barium as people twice my weight.

I went outside to the parking lot to what looked like a big book mobile, but it was actually a imaging lab on wheels which contained another monstrous, claustrophobic piece of equipment. First, I received an IV with radioactive sugar. Before they administered this stuff (for lack of a better word) to me, they removed it from a lead box in a safe with signs screaming "Radioactive" everywhere. Hmmm... Then the nurse, Frances, left the room and said she was closing the door to protect herself from the radioactivity. Hmmmm.... All in the name of my future health, I guess. (and by the way, I am not claustrophobic, and none of the scans has been at all uncomfortable.) Also, Frances' Mom is currently undergoing biopsies and other tests for breast cancer - her results are still inconclusive.

The difference between the MRI and the CT scan and Pet scan were the sound effects. The CT and Pet scan were mercifully quiet, and I actually got to hear the music playing in the room. Also, the CT, PET scan machine took me for a little ride. The "bed" would automatically move me through the cylinder as the machine scanned different parts of my body. Finally, for this procedure, I was actually able to keep my clothes on too, which these days, is a good thing!

Again, I asked a lot of questions. The PET scan can show cancer at the cellular level, so they will be able to find out exactly where the cancer is in my body - eyes to thighs, anyway. The CT scan will also pick up things that shouldn't be there.

Then it was back to the surgeon's office so they could check the porta-cath again. I was good to go, so we quickly headed back to Williamsburg for my first chemo treatment. Bo was with me. We were there for about three hours. They had a nice reclining chair for me, and we actually watched a movie we hadn't seen before, a remake of The In-Laws, and ate Taco Bell. The movie was cute and pretty funny. I would give it three stars. It was the best quiet time Bo and I have been able to have for the last several weeks! I feel fine. We all went for a walk tonight. I am calling it a day and will write again when I have more updates.

First Posting

2006-05-30T21:39:00.000-05:00

Hi. Betty sent me a link for setting up a blog, and now I am just trying to make sure it works. Here goes...