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.

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.

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

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!