I met with this lovely young coordinator before I started chemo. She gave me a whole battery of tests: How many words can you think of that start with a particular letter? If I list a bunch of unrelated words, how many can you repeat back to me? How quickly can you connect dots according to a progression of letters or numbers? How well do you analyze little Lego-like shapes drawn from different points of view? I think these are the same kind of puzzles given to someone who’s being tested for Alzheimer’s.
The brainteasers take about an hour and a half. I took them again during chemo, then six months after chemo, then a year after. I’m now 18 months past my last chemo infusion, so it’s time for memory games again. I have no idea how I’ve done on the tests; I agreed not to know when I signed the study consent forms. But I hope it will help give the researchers what they need.
Because I bet there isn’t a cancer patient in the world who has gone through chemotherapy who wouldn’t ask this: How could you NOT think chemo-brain is real?
Of course, doctors insist on data, on evidence. They want answers to specific questions like these: Does the mental fogginess come from the chemo, or the cancer? Or might it just be a result of the stress of having cancer? Does chemo create physical changes in your brain that make it hard to think? Can other physiological changes linked to thinking problems be linked to chemo drugs? Which chemo drugs? At what doses? So far, the results of scientific studies have been mixed. Chemo-brain turns out to be very difficult to measure.
My own experience is just what researchers would call “anecdotal,” but I gradually became a bubblehead as I slogged through my six infusions of Taxotere and Carboplatin. Just before I was diagnosed, I had started writing a complicated magazine pitch about nanoparticles, teeny-tiny things being incorporated into consumer products. I tried to pick the proposal up halfway through chemo, one day when I was feeling ambitious. I could barely understand what I’d written. It got worse: By the last cycle of chemo, I was too tired and too fuzzyheaded even to read. By the time I got to the end of a paragraph, I couldn’t remember how it started. So I just sat dumbly in a recliner, sleeping, watching TV, or listening to NPR.
Things are much better now: I just finished a big, 5,000-word magazine piece based on that nanoparticle pitch. I’m sure I wouldn’t have understood a word of it while in treatment, much less been able to write it.
Today, I came across a small, recent study from the Cleveland Clinic. Dr. Halle Moore of the Clinic’s Taussig Cancer Institute recruited eight pairs, each composed of a chemo patient and a healthy friend. She gave the study subjects the same kind of tests that I’ve taken, but then she also measured the subjects’ brains with an “electroencephalogram” (EEG), a scan that measures brain function.
In June, at the annual meeting of the American Society of Clinical Oncology, Dr. Moore reported that her team had found significant changes in the brain activity of the subjects receiving chemotherapy. The EEG showed “high amplitude;” that is, more brain activity, when doing cognitive tasks. In other words, chemo patients had to work a lot harder to think.
If you’re going through chemo now, your reaction is probably a Homer Simpson, “Doh!” But to these researchers, I say, “Bravo.”
Hopefully, this will be the beginning of a body of evidence that proves chemo-brain is real. And that will lead, I hope, to insurance guidelines, workplace policies, and disability policies that recognize that cancer patients aren’t shirking when they plead chemo-brain.
What do you think? Have you suffered from chemo-brain? How does, or did, it affect your work and your life?