Chemo Brain--To the Edge and Back

Patient Expert

Beth's blog this week riffs on last Sunday's New York Times article on chemo brain, titled "Chemotherapy Fog Is No Longer Ignored as Illusion." Like Beth, I was happy to read that doctors and researchers are now taking very seriously this disheartening loss of brainpower that some of us undergo after chemotherapy. The Times article, quoting Dr. Daniel Silverman, a researcher at U.C.L.A., noted "Until recently, oncologists would discount it, trivialize it, make patients feel it was all in their heads" Now there's enough literature, even if it's controversial, that not mentioning it as a possibility is either ignorant or an evasion of professional duty."

I was lucky in so many ways when I was treated for cancer five years ago, and the opportunity to participate in clinical studies was a big one. I was one of the first subjects in one of the first chemo brain studies, directed by Dr. Tim Ahles, noted in the Times article as "one of the first American scientists to study cognitive side effects." Dr. Ahles is now director of neurocognitive research at Memorial Sloan-Kettering Cancer Center in New York; back then, he lived up here in Vermont, and did his research at our local cancer center. My son and his were playmates in elementary school; years later, out paths crossed again when I volunteered to take a battery of tests over the course of a year or so to track my mental acuity after chemo. When I saw the ad in the doctor's office requesting participants, I thought, why not? Maybe someone can tell me this fog that's filled my head isn't "all in my head"

The neuro-psychological tests showed I was still performing at a high level. But I knew something awful had happened. If your mind is a blackboard, chemo brain is the eraser. I couldn't remember my phone number, my mother's name, the street I lived on" not always, but frequently enough to be scary. I didn't know which way to turn a water tap, to make it work; my vocabulary evaporated like a summer shower on hot pavement. Heck, when I forgot my phone number I couldn't even look it up in the phone book, because I couldn't figure out what order the letters of the alphabet went in-THAT'S chemo brain.

I lived with chemo brain for four years; I made my peace with it, and developed a bunch of coping strategies that worked pretty well (lists, lists, lists!). But now, in the past six months or so, I've realized I'm getting better. I still struggle to find certain words-and that's an issue, when you're a writer. But I seldom forget my best friend's name, my son's address at school, or the difference between left and right. Things are looking up; the sun is starting to clear the fog from my head.

So, for any of you "chemo brains" out there wondering if you'll ever be as sharp as you once were-there's hope. Perhaps you won't get back everything you lost; menopause, age, and the emotional stress of cancer are all players in this game, not just chemo. But don't give up; the sun may come out again, as it has for me.