Thursday, November 30, 2006
Up, Down, but Mostly Up

The last few weeks came with its own set of highs and lows and without further delay, I bring you the last few weeks in bullets:

  • My mom (and her church crafting group) was honored as the donor of the year at a state developmental hospital for ten years of making and donating hand made Christmas gifts to the clients
  • My mom went into the hospital for pneumonia the next day
  • I spent four nights at the hospital with her (sheesh, they never let you sleep there)
  • One of my long lost friends called me while I was going to the hospital and offered to keep me company on the night shift (I told him to stay home, but the gesture was so thoughtful. Who does that?)
  • My mom came home from the hospital
  • We had a visit from my nephews John and Mark and Mark’s wife Kristin
  • We enjoyed a lovely and relaxing Thanksgiving holiday
  • My doggies were thoroughly spoiled for four days in a row
  • I met with my plastic surgeon and scheduled nipple reconstruction (signifying the beginning of the end of reconstruction)
  • My mom’s doctor proclaimed her lungs clear
  • I was appointed to an advisory council at a local community college
  • One of my dearest friends called to tell me he is flying in for a Christmas visit
  • Today my mom celebrates her 84th birthday

There are quite a few milestones there. I have had much for which to be thankful this season, but they all pale in comparison to the joy of celebrating my mom’s 84th year. She is an amazingly strong woman who continues to give of herself in every way possible. She is my hero, my inspiration, my friend, and one of the best huggers around. And darn it, she can still solve the word jumbles faster than I can most days!

Happy Birthday, Mom. Here’s to many, many more.

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Tuesday, November 28, 2006
Embracing the Pink
For a long time I was not part of the pink ribbon club. I have blogged about the big pink marketing machine known as breast cancer awareness, whether it comes in the form of a month or as a surprise attack throughout the year. I have shared how I struggle with the marketing aspect and that I find the month uncomfortable at times. Many of you did too and I was right there with you, even though I am indeed part of the breast cancer community. Do you understand? I. was. right. there. with. you.

This year, I tried to find peace, a middle ground so to speak. I learned about all the advances that breast cancer research lends to other cancer treatments including lung cancer, head and neck cancers, and others. This helped me to realize that the fifty cents from M&Ms resounded throughout the entire cancer community. Not such a bad deal when you consider how those fifty cents add up over time and across many vendors.

Since October I have read one too many pieces about how other cancers are slighted because they don’t get the same attention, how lung cancer is actually the number one killer among women and should get more attention, and blah blah blah, wine, wine, cry. Well now, all of my anti-pink friends who I am lovingly calling the bitchers and moaners in the blogospere, you have pushed me over the edge. Let’s examine the facts:

1. First, we are a nation obsessed with breasts. No, let me restate that. We are an international people obsessed with breasts. There is nothing sexy about lungs. Nothing sexy about your pancreas either. No one (except perhaps your doctor) will judge you or promote you or ask you out to dinner based on the appearance of your liver. Who wouldn’t want to save the breasts? Hell, I still wish I could have saved my own. There is even a line of t-shirts dedicated to the cause.

2. This is serious (any time I use stats I’m serious). According to the National Lung Cancer Partnership, 82,000 women will be diagnosed with lung cancer this year and 68,510 will die from the disease. Yes, the mortality rate is deplorable; however, according to the Komen Foundation, 212,000 women will be diagnosed with breast cancer in 2006 and 40,970 will die from this disease. While the mortality rate is lower, the rate of diagnosis is two and half times greater. And guess what? The mortality rate was MUCH higher when we weren’t raising funds for research, treatment, and early detection.

Put these two items together and what does it mean? There are a whole lot more breast cancer survivors out there to raise awareness and be the squeaky wheel. And while yes, we are alive to tell our stories, we have also been through hell. In the seventies and early eighties, mastectomy was the only way to go and everything was removed down to the chest wall muscle. Women were left visibly deformed and ravaged with no insurance benefits for reconstruction. Many of us know the lifelong side-effects of chemo, but in the early days of chemo the patients suffered even greater. Through research and clinical trials we have become smarter. Lumpectomies are performed when possible and chemo and radiation are limited in duration to what is known to be effective.

We have taken these experiences and brought them to light and the corporate community responded to our pleas for help. Sure, it helps them too, but it helps us all. If contributing to breast cancer awareness were not profitable for the vendor, it would not continue to occur. Whether you embrace the pink or not, somebody is out there buying up the Campbell’s Soup faster than you can schedule your annual mammogram.

Next time you are complaining about breast cancer awareness, remember that when you or someone you know is being treated for ovarian cancer or head & neck cancer that the drugs that are being administered were developed to fight breast cancer and through research found to be effective for other cancers as well. Next time you complain about the color pink remember that research for breast cancer resonates through the entire cancer community. Next time you complain about the barrage of products on the store shelves, remember that one of those 212,000 women diagnosed could be you or your mother or your sister or your wife. Next time you complain about how your cancer doesn’t get the same attention as my cancer, remember that all cancers are our cancers and any contribution we make to one effects us all.

And next time you complain about any of this, remember that you made me cross over to the pink side.
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Tuesday, November 14, 2006
What's the Big Hairy Deal?
A quick trip through the history books and we know as much about a woman’s hairstyle as her historical contributions. Whether it is Cleopatra’s seductive bob, Marie Antoinette’s up do, or the flowing locks of Botticelli’s Venus, a woman’s hairstyle is synonymous with her personal style and identity. What’s the big deal? It is only hair. Well at least that is what I have been telling myself for the past two years.

But can’t we tell a lot about a woman by her hairstyle? Hmmmm . . . how many Playboy Playmates have short hair (or not blonde hair for that matter)? Flash back to Three’s Company and you will know which one was the sensible one and which one was the playful one by the hairstyle. Let’s flash back even further to Gunsmoke’s Miss Kitty with her upswept saloon girl do versus the conservative hardworking Ma Ingals of Little House on the Prairie. Hairstyles reveal things quicker than Lady Godiva can cover them up.

There was only one thing on my Christmas wish list in 2004. I had finished chemo in November and was recovering from surgery in December. I was joyous from a clean pathology report, but there was still something missing. On Christmas Eve I awoke to a crown of soft, tiny grey-brown hair. An arched shadow above my eyes would give way to brand new eyebrows. Tiny little points of eyelashes were just beginning to emerge. It was indeed a Christmas miracle for Santa brought me the gift of hair growth (cue the angel trumpet blasts and the rays of light from the top of my head).

Not that I am trying to perpetuate the importance of hair, but I couldn’t help reminiscing about the hair journey. In these last two weeks I have finally felt like my hair was getting to an acceptable length and style. Not since birth have I had short hair and these past two years of awkward hair lengths and “growing out” styles have been a challenge, not to mention the changes in texture and body that have taken place. It has been yet one more thing that made me feel less like me during this cancer chronicle.

But what is it about feeling my hair brush against my neck or being able to put it up in a clip that makes me feel more me? Or is it simply being able to once again have control over how I look? I’m not sure of the answer, but I do know that losing one’s hair is a significant step in the cancer battle.

As I wrote in August 2004,
“This has been quite a week. I think I have experienced more emotions and feelings this week than in any week since beginning this journey. And oddly enough, the one thing I thought I was most prepared for was the one thing that brought me to my knees. . . Breast cancer and its treatment have an impact on the feminine aspects of a woman, though it doesn’t attack her womanhood. What is an outwardly physical sign that I am a woman? Is it my breasts? My softly curled flowing locks of hair? Is it my soft skin and nicely shaped fingernails? If my breasts are damaged, my hair erased, my nails and skin dry and flaking, am I still a woman?”
Losing my hair was a turning point. I was beginning to outwardly wear the badge of cancer. As good as wigs are nowadays, look closely enough and you can tell (yes, even on today’s pop princesses). With the exception of a daft colleague at the university who thought my new hat fetish was cute (not real perceptive, that one), my baldness was easily identifiable. What’s worse, I felt bald . . .bare . . . exposed, even when covered.

In much the same way, feeling like my hair is finally at a length I can appreciate is also a turning point of sorts. I feel like I am back. Life is becoming more comfortable to me again and I am feeling more at ease with things. Perhaps the team of specialists exploring various body parts (and not finding cancer) has given me reassurance. Perhaps its simply the passage of time dulling the cancer pangs. Maybe, just maybe, it’s the sweep of my bangs, the wispy tickling of hair against my shoulders, and the way it frames my face that lets me know that the cycle of life is still moving forward. As am I.
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Monday, November 06, 2006
But what is it?
Thank you to everyone who emailed me or left a comment (Thanks, Keri!) asking about the biopsy results. The biopsy came back as not cancer and not a drug reaction. Iam extremely grateful and relieved that it is not cancer related. All of the information I read on that subject was very dismal to say the least. So now, what is it? I have done exhaustive and extensive research on this issue. I have no delusions of being a doctor, but I do know I am a researcher. The doctor respectfully listened while I shared my research about the link between the horrid itchy leg rash, hormone (likely progesterone) imbalance, and thyroid condition (all worsened by the chemo and ongoing Tamoxifen). I even described how I can chart the itchiness with my cycle (peaking when the progesterone should be at its highest). When I was all done sharing my research I waited patiently for his response.

*crickets*

That is it. He simply looked at me while his mind raced feverishly through his encyclopedic dermatologic knowledge. I think even the street traffic below stopped and the earth fell totally silent (with the exception of the crickets apparently). My primary care doctor had the same reaction. It is a reaction that says, “She may have something here, but it is totally over my head” (or as we teach our students presenting their research, “That is an excellent point, but unfortunately it is outside the scope of my research.”). He paused, turned his head in such a way that the sun coming through the window glistened against his radiant and seemingly ageless skin, and told me to continue using the ointment for one more week then taper down to three times a week and then as needed to keep the condition under control. Oh, and don’t forget to moisturize. Oh ye of perfect skin, thank you for trivializing this persistent sanity challenging condition with a reminder to moisturize. Why didn't I think of that?

I know, I know, it is a lot of drama for a rash when babies are starving in India and getting HIV in Africa. I am just tired of living with it and having to hide my legs. It is one more thing keeping this cancer experience from being in the past (tsk tsk, when will I learn that it will *never* be a thing of the past?). As I told the doctor, I am seeing a primary care doctor, a dermatologist, a gynecologist, and an endocrinologist and I don’t know which one will be able to put all the pieces together and figure this out for me. Three down, one to go. My concern is that if this condition persists and we simply treat the symptoms, then I remain somewhat vulnerable since I had hormone sensitive cancer.

Anyone know a good medical researcher? At this point I’ll just settle for a good bartender.
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Thursday, November 02, 2006
Um, No Mamm.
Fall, a time for enjoying the crisp air, giving thanks, and enjoying a veritable smorgasbord of medical professionals. While the biopsy results await me tomorrow, I did see my new gynecologist. Much to my appreciation, this father-daughter ob-gyn practice is not a happy baby office. I did not see one issue of Parenting magazine nor did I witness one pregnant woman mindlessly caressing her protruding belly. Don’t get me wrong, I love the miracle of life and appreciate the beauty of pregnant woman. I just don’t love to be tossed in the middle of it all when I am there to examine the reasons why I will never be part of that elite group.

The office was fine; the doctor was okay. I may not necessarily make a lifetime connection with this doctor, but it works for now. I was a little disappointed with the conversation during the breast exam portion.

“So, when was your last mammogram?” the doctor asked.

“In 2004 just prior to the cancer diagnosis,” I replied.

“You haven’t had another one since?” she stated in disbelief.

“No, as you can see, I no longer need them.”

“You don’t?” she said, half asking and half questioning my personal care choices, and in a somewhat accusatory tone.

There was no mistaking the scars and the implants. How could a gynecologist not know that you don’t need a mammogram after a bilateral mastectomy? Given the number of women who have breast cancer and the number of women who have prophylactic mastectomies for genetic concerns, I would assume that a practicing gynecologist might know this. I simply looked at her while she quickly examined me and said,

“Uh, no. You see, I have no mamms to gram.”


A hush fell over the room. Within moments I was off the table and picking up a referral for a pelvic ultrasound and follow-up appointment. The fun times just keeps on rolling.
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Name: Jeannette
Location: Southern California, USA

This is my story about being diagnosed with breast cancer at age 39. I thought I was out of the woods, but four years late it came back. This is my quest to be a two-time survivor.

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