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.

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11 Responses

  1. anonymous says:

    I’ve never had chemo, but I’m on a medication that is essential to my safety and independence. I’m convinced it has similar effects. As important as words are to me, I find the loss of words less objectionable than the loss of mid-term memory. There are moments, events, entire trips I have no memory of taking, and without photos and baby books I’d have even bigger holes. The neurologist says it’s not a reported side effect, so that’s that. I choose to believe it’s the meds regardless; I’m in my early forties, and the other possibilities are unthinkable.

  2. steve wethington says:

    i have had a noticeable drop in brain functions since my skull surgery in December 07. 1st the Dr.s said for every hour we have you under it will take 1 month for the brain to repair itself. so 8 months later why wasn’t i better.

    Memory can come and go too. i no longer can remember all those faces i see until after many repetitions. is that growing older or the surgery near / into the brain sac? i’m 61.

    let alone the meds.

    I’d suggest though that you lose the I’m a wimp deal. Your strength far exceeds mine and your blogging helps me no end……….

  3. YAPCaB says:

    So sorry you got this surprise. Seems once you start cancer treatment there’s no end to the surprises. That’s not really true, but sometimes it feels like it.

  4. Maxine D says:

    Not nice!! – through other (health) circumstances, not Alzheimer’s, DH is loosing/has lost some function, particularly sort term memory, and frequently can’t recall the word(s) he needs – and it is frustrating to us both. I can empathise. The visuospatial loss must be difficult too.
    Prayer and blessings

  5. Knot Telling says:

    Thanks to each of you for your comments. I’m so glad you are all walking with me.

  6. I have found that sometimes these lingering side effects are dismissed somewhat casually by medical professionals too. I know I have chemobrain to some extent. I’m grateful the reality of this is finally be recognized. It’s nice to have validation at least.

  7. YAPCaB says:

    Reblogged this on Yet Another Prostate Cancer Blog and commented:
    I haven’t had to decide if I’m going to have chemo yet. It’s disturbing that the medical profession seems unaware of some very important real costs of chemo.

  8. Andrew says:

    I also had and continue to have mild chemo brain and have also noticed sometimes harder to come up with the word I am looking for. Not to mention my proofreading skills aren’t quite as good. I did get cognitive testing as part of a research project; while objectively, my score was not bad, the researcher acknowledged that for people such as yourself and me, who operate at high levels, we notice the difference, that we aren’t as sharp as before, and that we need to develop management strategies.

    In the end, knowing this in advance would not have changed my decision to go ahead with treatment; after all, being alive and having reduced cognitive capacity is better than the alternative. But doctors need to acknowledge this and not dismiss it, mine were quite good in this regard.

  9. amyslifeblog says:

    The other day I couldn’t think of the words “revolving door”. Arg! I called it the round spinning door. Darn you Chemo brain!

  1. 13 November, 2012

    […] deficits are the “new normal” in the post title. I wrote about them in my post Chemo Brain. Some of them are more serious than others. Not being able to find words on demand, even in my […]

  2. 4 December, 2012

    […] might be one reason that chemo brain upsets me so much. I can manage the actual deficits with the little tricks and methods I spent my […]

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