Everything Changes - The Guide to Young Adult Cancer

Soon into my cancer care, I somewhat unintentionally started developing small, mundane rituals around my house.

After my first surgery, I had a daily pattern.  When I could muster up the energy, I would sit in a warm bath and listen to Patsy Cline.  The bathroom was a world away from the rest of my studio apartment where my mom and I were living side by side.  Getting into the tub felt like a vacation, and a major accomplishment.  My world had become so small, so boring, so comparatively unproductive that taking my Patsy Cline bath everyday felt like a tangible accomplishment.

I typically despise routine, schedules, and predictability.  But so many things that I could formerly count on, like having a social life, working, paying bills, were thrown out the window when I became a young adult cancer patient.   I wanted just a shred of something I knew I could count on;  I needed to become a tame control freak.

During my second treatment, I instituted four hours of alone time each day.  I sent my mom packing, unplugged the phone, powered down my computer, and sat on the couch looking out the window.  I simply stared at the bare tree branches for four hours each day.  My mom probably thought I was totally depressed.  But I just needed time to myself.  It was my anchor.  Everyone around me had places to be at certain times – work, class, dates.  I needed a schedule to my day so I wasn’t just floating through the murkiness of unmarked time.

A lot of people I interviewed in Everything Changes had ways that they needed to spend time during and after their cancer.  Greg spent long stretches of time alone just working on his boat.  HollyAnna loved to go up to the mountains, sit, and watch the water flow down stream over rocks and stones.  When Wafa’a lived with her parents, she’d retreat to her room, lit candles, listened to Nina Simone, and read Milan Kundera.

Do you have any little rituals that get you through the hard times?  Have you ever felt compulsive about them?  Do you do them even during times when you are well?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about how I coped with staying sane during cancer care.

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?