Chemo Brain

Chemo Brain. So many of us (maybe even most of us) have gone through it, and some of us – like me – never get rid of it. The words that used to be there but aren’t any more. The inability to give clear directions over a route you know well or to negotiate obstacles without bumping into them. Forgetfulness. Even trouble gluing together a broken plate.

I have been telling my doctors about my problems for years. They don’t pay attention. The most troubling issue to me is not being able to find words. I am a writer and translator; words are my tools. If I can’t find my tools I can’t work. But the doctors don’t take me seriously. One friend has suggested that because I use words professionally my baseline function may be such that a deficit is simply not recognized in the casual attention of a twenty minute oncology appointment or seven minutes with the GP.

The results of what is described as a “large meta-analysis” were published in a September 4th press release by the Moffitt Cancer Center and reported in the print and online media. I’ve waited two weeks to write about it because I was so annoyed. I was annoyed because I’ve been told that I was imagining the deficits or that they are just part of aging (I am fifty-seven, for goodness sake, not eighty-seven!) or some sort of middle-aged lady hypochondria (“To be expected, dear, after what you’ve been through”). No one took me seriously enough to refer me to neuropsychological testing. The condescending responses to my complaints were sufficient to stop me from pushing the point or from pursuing testing through my own connections. My name is Knot Telling and I am a wimp.

According to the press release,

“Our analysis indicated that patients previously treated with chemotherapy performed significantly worse on tests of verbal ability than individuals without cancer,” noted co-author Paul B. Jacobsen, Moffitt senior member and associate center director of Population Sciences. “In addition, patients treated with chemotherapy performed significantly worse on tests of visuospatial ability than patients who had not had chemotherapy.”

“Breast cancer patients treated with chemotherapy who have subsequent cognitive deficits should be referred to a neuropsychologist for evaluation and management of the deficits,” Jim said. “Management usually involves developing an awareness of the situations in which their cognitive difficulties are likely to arise so that they can come up with strategies to compensate. Research shows that such strategies can make a big difference in daily life when cognitive difficulties do arise.”

So it looks as though even if I had been taken seriously and given an official diagnosis, there would not have been any real change. I would still be dependent on management strategies, probably pretty much the same ones I use now. It is painful, though. I am diminished. This is more of the “we had to poison you in order to heal you” story that is cancer treatment as I experience it. Would it have been less painful if I had been advised of this possibility in advance?

To tell the truth, I’m not sure it would.