Everything Changes - The Guide to Young Adult Cancer

The notion of writing a letter to a body part of mine has always given me the heebie-jeebies. It reminds me of the scene in Fried Green Tomatoes when the gals crack out mirrors and befriend their coochies. Not up my alley.

But this request was different. It came from a fantastic website called Dear Thyroid, and there’s nothing cheesy or touchy feely about it: Two smart gals with thyroid disease toss out themes for reader rants that start with “Dear Thyroid.” Yesterday they posted my letter called Thycotic.

In my letter I asked my thyroid why after nine years people around me are still so curious about what caused my thyroid cancer. My suspicion is they want to know so that they can figure out how to not get what I’ve got. I wrote:

“If we truly understood the mechanisms that caused cancer, wouldn’t we be much closer to finding a cure? I’m not talking an RAI cure, I’m talking the kind of cure that makes you not get cancer in the first place. We are nowhere near there. Unexplained cases of thyroid cancer are skyrocketing (it is the fastest growing incident rate out of every kind of cancer in the United States.)

So my friends and family are going to have to shiver wondering if it will happen to them too. Because the truth is that it just might. Not cool news. But when you are facing nine years of thyroid cancer, the truth is less painful than sugarcoating. And I’m kinda learning to love life that way.”

I think from an epidemiological perspective it’s way important to study causes of cancer - environmental, genetic, and otherwise. But regarding what caused my individual case – it never really mattered to me. I’ve got what I’ve got. The question is what am I going to do with it?

Do you wonder what caused your cancer? Is it a curiosity, an obsession, have you done research? Do other people want to know what caused it? If your cancer is genetically based, what is it like to think about that?

For a great story about how Mary Ann handled her mom obsessing about the cause of Mary Ann’s lymphoma, read ‘It Girl’, Chapter 9 of my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

Also tune in this week to The Group Room Radio.  I’ll be a guest along with Dr. R. Michael Tuttle of Memorial Sloan-Kettering Cancer Center, talking about thyroid cancer in young adults.  Call us on air with your questions.

I read a med journal article yesterday about vegetarian teens being at risk for anorexia and it got me thinking about cancer survivors and eating disorders.

In my late teens and early 20s I was anorexic and slightly bulimic – no puking just herbal laxative tea.  A vegan, lola-granola, ballet dancer, I was afraid to eat rice cakes because they had .05 grams of fat.  I obsessively read labels and scrutinized every ingredient that entered my mouth.  I exercised like mad and couldn’t look at my body in the mirror. Reflecting on this, I’m damn proud that I figured out how to pull my ass out of such a scary starvation addiction.

By the time I was diagnosed with cancer at 27, I was eating normally, had hips and curves, loved French pastries and brisket.  So it was a jolting mind fuck when part way through my treatment I realized how much this disease could mess with my appetite.

With cancer, I wasn’t eating because I was dizzy and nauseous. My treatment protocol necessitated that I inspect for iodine every morsel I put in my mouth. I was bombarded by media images, books, and trendy articles telling me that if I ate vegan, avoided sugar, and subsisted on vegetables I could beat my cancer. My medication made me shed 18 pounds.  I looked and felt anorexic all over again, even though I wasn’t.

I had some serious in the mirror talks with myself to keep me on track and not let all the side effects, stress, and fashionable cure diets slide me back into my horrible habits of the past.  I’m still stick thin from my meds, but my mind is balanced and I’m aggressively trying put on pounds while eating healthily.  (Yes, you can add your name to the wait list of people who want my problem.)

Fifteen-percent of young women in the U.S. display some kind of eating disorder patterns, so I cannot be the only gal (or guy) who has dealt with young adult cancer and the memory of an eating disorder.  Yet, I never hear it spoken about.  Do you?  Did food, appetite, weight gain, or weight loss ever mess with your mind during treatment?  If so, how did you deal with it?  Do you ever take cancer diets to an extreme where it seems obsessive or unhealthy?  Where is the balance?