My Year of Healing

In May 2006, at 41, I was diagnosed with Stage IIB breast cancer. I have used this blog to share my journey of healing with friends, family, and anyone who wished to read my story. The blog has helped me heal, and I thank all of you who have used it to stay abreast (smile) of my progress and who have supported me along the journey. I love you all! To learn more about my latest project, please visit

Tuesday, May 15, 2007

Reflections on My Year of Healing

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!

Tuesday, May 01, 2007

A Morning Song

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.

Wednesday, April 11, 2007

Doctors, Doctors, and More Doctors

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!

Thursday, March 29, 2007

Authentic Anger

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.

Monday, March 12, 2007

One Night Stands and Other Late Night Thoughts

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.

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."

Thursday, March 01, 2007

A New Tension Tamer

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!

Wednesday, February 28, 2007

Do I Need Patience or a Thyroid "Vitamin"?

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!