Wednesday, June 4, 2014

After Cancer, Giving Back

As published on The Huffington Post

Resting anxiously on a retractable bed and about to begin the chemotherapy drug Cytoxan, I sent my mom for a chocolate iced glazed Krispy Kreme donut from the hospital cafeteria. During treatment there were just three times each day when I could eat: immediately upon waking, and before and after the infusion.

Mom returned with an original glazed. I yelled at her: "The chocolate would drown the nickel taste of the infusion, but I don't want this!"

"I'm sorry. That is all they had," she said with her usual patience.

Two hours later with the infusion complete, I asked for small cereal boxes from the heavy shoulder bag Mom lugged everywhere. She dug deep to find them, past the pretzels I sometimes wanted and waters I probably wouldn't but were there "just in case," as she would say. Later, my mom would visit the hospital lobby again to wait an hour at the pharmacy to pick up the thousand-dollar shots I'd receive nightly to boost my white blood cells.

I spent much of my adolescence at the National Institutes of Health (NIH) with my mother while being treated for Ewing's sarcoma, a bone cancer. NIH is the nation's medical research agency with its budget allocated by Congress. The American public paid for my treatment and medication; my parents paid for my donuts.

Treatment consumed my junior year of high school and when I returned for my senior year, my friend, Josh, and I estimated my treatment's total cost. Josh began calling me Million Dollar Man. It never occurred to me to estimate the total hours my mom sacrificed for me, or how many times I fussed. I survived by following a set of rules I created for myself, like "don't complain about treatment," so my agitation which could never be about cancer was instead about donuts. Keep reading, here.