Brain Fuzz

I’m participating in this clinical trial that’s supposed to measure whether chemotherapy affects cognitive function. Of course, this study follows rigorous scientific protocols.

I should email the researchers and let them know that my “observational study” of one, myself, has conclusive results: Yes, chemo messes with your brain, or rather, with my brain. I would tell the researchers all about it, if I could find the binder where I put all the details about the study. What was I writing about now?

Oh yeah, my brain: Sometimes, I think I’m really OK, really I am. Then I fire up my computer and realize that I have completely forgotten about an appointment for an echocardiogram. This is a test to make sure that the Herceptin, the monoclonal antibody I’m taking, doesn’t damage my heart. You’d think I’d remember something important like that. But I don’t.

I have an appointment to have lunch with a friend, then forget to confirm.

I tell myself several times that I’m going to return an empty dish that used to have lovely lasagne in it. Friends have been fabulous about the casserole delivery. Then I walk out the door and drive to the friend’s house, without the dish.

I can’t really focus. So I wander around thinking things like, “Where am I going?” “Why am I holding this pencil?” “What was I going to do today?” “Where do these towels go?”

I make a commitment to do a VERY modest task for a charity blanket drive at my daughter’s school, then keep forgetting and forgetting, and end up doing it at the very last minute and delivering the fliers just moments before they’re supposed to be distributed at Monday drop-off. (Full disclosure: Journalists often do things at the very last minute—very little would ever get written without a deadline—but we scribblers usually do it consciously, not unconsciously.)

I start to tell stories, then forget the point halfway through.

Luckily, I’ve had these kinds of symptoms before, when I had Lyme Disease for a few months in the late 90s. I’m reasonably sure this will pass, since it did once before.

But I can hardly wait to do all those clinical trial cognitive tests post-chemo: trying to remember random words and numbers that have just been recited by the clinical coordinator, exciting stuff like that. I’m sure I’m going to ACE the test. Not.

At least I won’t remember to be embarrassed.

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About leftbreast

I have had breast cancer. I was diagnosed at 47, and am now 49. I have finished "active treatment," two surgeries, chemo, radiation, monoclonal antibodies. These days, I only take a drug to suppress my uptake of estrogen, since my tumor was highly reactive to that hormone. I have been married to my husband Pete for 21 years. I have a stepdaughter, Maureen, 30, and a daughter, Erin, 10. I've been a freelance magazine journalist for 20-plus years, covering everything from Chinese foreign policy to Catholic nuns to endangered species. I have had a great life. I have lived in Asia and all over the United States. I have spent nights with tree-sitters in Oregon and with astronomers at the Mauna Kea observatory in Hawaii. I've been to a cocktail party on the poopdeck of a British destroyer docked in Shanghai. I've taken the bus to Tibet, and tramped through the cloud forests of Panama with biologists. A magazine sent me on a raft trip down the Colorado through the Grand Canyon; another sent me to cooking school for a week. I have spent time with celebrities, presidents and heroin dealers. I love my work. I have a loving, supportive family and more friends than I probably deserve. I have had the space and time to camp, ski, cycle, garden, cook and spoil my pets (an Australian shepherd, a German shepherd and a tabby cat). If it all ended tomorrow, I would have to say that it has been a really, really good ride. When I was in thick of treatment, I was simply fighting for more time. Now, I'm trying to connect the experience of cancer with the rest of my life, with the time that's been won. I hope the cancer never comes back, but if it does, I'll be ready. That's what this blog is about.
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7 Responses to Brain Fuzz

  1. I follow your posts and would like ask if you would be willing to write a guest post for http://www.noboobsaboutit.com on what many survivors refer to as chemo brain. I am especially interested , as would my readers be, in the testing you have agreed to take post chemo.

    For a long time chemo brain was not really recognized as a reaction to chemo. I am glad the medical professionals have gotten to the point where they are testing about it!

    If you would be interested in sharing a guest post, please contact me at jean@noboobsaboutit.com.

    Thanks!

    best regards,

    Jean

    • leftbreast says:

      Jean,
      I’d be glad to do so. Will contact you via email.
      Heather

    • To you Brave Women: I participated in a Screening clinic in Atlanta, GA. Heather knows all about HANDLE but for clarity’s sake, it’s a non-drug treatment for neurological issues. In the screening clinic I met a woman who knew about HANDLE because her friend used it to help with “chemo brain,” a very real phenomenon that I have seen a loved one go through. The HANDLE program helped her find her keys, remember appointments and a whole host of other very small but important things. Heather: try the basics like Face/Skull Tapping, Crazy Straw, Blowing, Seated Clapping Game. Call/write me and I can help you more. For anyone reading this struggling with this often ignored side effect, some simple exercises can really help. Visit http://www.handle.org for more info or contact me at katie@handlecare.org.

      • leftbreast says:

        All- Just wanted to let you know that my daughter Erin did two years of HANDLE work and her early struggles with school (lack of focus, difficulty reading even though bright and not dyslexic) have all but vanished. She is now reading chapter books and reciting her times tables like a champ. She loves school now. HANDLE is non-traditional – most inter-disciplinary/holistic approaches to problems are – but it is based on actual science and it works. So if your “chemo brain,” or whatever, interferes too much with your life check it out.

  2. Wendy says:

    Heather, some of the cognitive stuff can be due to the stress you are under, which I think you minimize. But it’s scary when that kind of thing happens. I remember getting a bit scared by some cognitive problems after starting a new, very strong, medication, and the docs were very dismissive when I told them I was walking into traffic and forgetting where I was, telling me I was stressed—I wanted to make them try the medication themselves and tell me how sharp they felt! But there is a stress factor that can be at work in some of what you describe, so go easy on yourself.

    • leftbreast says:

      Wendy, You’re right, I don’t realize/acknowledge the stress. Was the same way when my Dad was dying of lung cancer. Just head down and barrel through. I’m writing this on the couch, pretty close to collapse. Last chemo tomorrow. Can’t come too soon.

  3. bklyn76 says:

    just wanted to send you lots of strength on your last day of chemo. and to let you know i’m constantly suffering from the same kind of forgetfulness. i just call it *mommy brain*.

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