Wednesday, November 18, 2009

When Cancer Muddles the Mind By KAIROL ROSENTHAL - from the New York Times

November 17, 2009, 10:23 am

When Cancer Muddles the Mind

I’ve become one of those people who, by the time I walk from the couch to the kitchen, can’t remember why I’m standing in front of an open fridge. Some people can laugh off these memory blips as old-timer’s disease. But I’m only 37. And it doesn’t feel funny staring into an abyss of cartons and containers unable to remember that I want a glass of orange juice.

Like many thyroid cancer patients, my memory decline began nine years ago after my first treatment. Usually a quite curable disease, my body doesn’t respond to the standard treatment. After multiple surgeries, I’m still living with two tumors lodged in my neck. My doctor does not expect I’ll be cured anytime soon. Nor does he think this will kill me. I face the luckier of two fates for young adult cancer patients: I will hopefully live for decades and decades.
I’m grateful to be alive, but not every moment. Long-term side effects have reconfigured my body and mind. I’m still learning how to adjust. I’ve grown accustomed to my thinning hair, gaunt physique and flimsy immune system. The cognitive side effects of my cancer, however, make me feel old before my time and have tanked my self-esteem.
I bumble through each day feeling my brain slip through my fingers. Before leaving my apartment, I check four times to make sure I have my keys. I have to reread a recipe eight times to grasp the order in which to add flour and milk to a cake batter. After reading a magazine article, I can’t tell you five minutes later what it was about.
I’m familiar with the argument that I.Q. tests aren’t accurate measures of intelligence, and online versions of those tests are supposedly even more fallible. Still, a few years ago, I sat at my computer and took one. I hoped a concrete score on the screen would help convince me that despite my mental potholes, I’m still an intelligent woman. Like any good vice, it was only a quick fix; I felt empowered by my I.Q. score for about 20 minutes. What lasted longer was the shame I felt about needing an online quiz to prop up my self-esteem.
I’ve turned to my doctors for validation. But, like dozens of thyroid cancer patients I’ve spoken with about memory loss, my doctors do not acknowledge my symptoms, much less explain the causes. Chemo is rarely used to treat thyroid cancer. So, is our memory loss caused by our radioactive iodine treatments? Is it the result of our therapeutically induced hyperthyroidism used to prevent cancer cells from growing? I grill my top-notch doctors and scour medical journals for answers. I have only found a 2003 study conducted at the University of Texas M. D. Anderson Cancer Center explaining that thyroid cancer patients reported more memory loss than other cancer survivors and that further inquiry was needed. I have hung it above my desk.
I’ve tried to mitigate the emotional stress of my memory loss. I’m sad that I will quite likely never enroll in grad school or a doctoral program because my brain can’t hack it. But I’ve adapted by becoming a writer and consider the book I wrote the equivalent of a diploma. I’m frustrated when arguing a point that I can’t remember all the facts. But I’ve learned to preface these moments with a disclaimer about my memory, which takes some heat off of the cognitive spotlight. Still, I’m not over the loss of having my brain turn to Swiss cheese in my 30s.
I can’t remember conversations I’ve had with friends a few months ago. But curiously, I have impeccable recall of social situations in which I flush red with brain fog embarrassment. Chatting at a cocktail party a few years back, I wanted to say “rose garden” but couldn’t think of the word garden. It finally came out as “rose gorden.” “Rose Gordon?,” a guy replied in an over-the-top, fake Brooklyn accent. “I remembah Rose Gordon!” Everyone listening cracked up. I’m known for my gift of gab, but that night I kept my mouth shut, fearing the incoherent garbage that might fly out.
Cancer survivors are often known for becoming risk takers and living life on the edge after getting a diagnosis. For me, life on the edge is continuing to put my thoughts and ideas out into the world even though I might fumble miserably and reveal to friends, colleagues and strangers my shoddy synapses. My big leap is not quite as glamorous as running a marathon or climbing a mountain after treatment. But it is hard work just the same. Exposing my rickety mind is getting slightly easier with time. Hopefully I’ll have decades to practice.
Kairol Rosenthal is the author of “Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s” (Wiley, 2009). Dana Jennings, who writes each Tuesday about coping with cancer, is on vacation.

1 comment:

Kairol Rosenthal said...

Thanks for posting this link to my article. I really appreciate all the work your blog does to bring awareness to thyroid cancer!