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Sunday, March 14, 2010
Gleevec Brain a.k.a. Chemo Brain
There's a little secret that all of us- who have been on some sort of chemo-have, and that is chemo brain. It's interesting, the reaction I get from my friends who are cancer survivors-we talk about it in a very hushed voice-nobody wants to admit to it-but we all live with it-and "it" chemo brain-is the "new us". The docs didn't tell us we would be fighting this too along with everything else. Once we start the conversation, and we have confirmed for each other that we are experiencing "chemo brain" there is the huge sigh of relief-finally-somebody else understands.
One of my friends hipped me to this website-a wonderful resource-please share it with anyone you may know who is struggling with chemo brain http://www.chemobraininfo.org/
Once I got to the website, and saw the books my friend wanted me to see, I immediately got in touch with my local library-one they had-the other they're getting from another library.
I started perusing thru their articles, and found the first 2 from the NYTimes......
This one "The Fog That Follows Chemotherapy" by Jane E. Brody http://www.nytimes.com/2009/08/04/health/04brod.html?emc=eta1 talks about the symptoms of "chemo brain", one of them I had to laugh at-"inability to follow instructions when cooking or knitting"-ha! I tried to re-learn crocheting, I wanted to make a baby blanket for a friends first baby, and I got as far as the first chain, then I completely lost it, couldn't follow the directions, became dizzy-I gave up. (and yes, I had crocheted a baby blanket before...)
The second article "Taking Steps To Cope With Chemo Brain" (same author) http://www.nytimes.com/2009/08/11/health/11brod.html?emc=eta1
talks about coping mechanisms-all of which I do except for the ask for help part-although-just this week I had arrived to the conclusion that there are things that I just can't do anymore, and that I would need support. That's a very difficult place to get to and to be in.......but I think the fact that I recognize that now, will help me move forward.
Many folks laugh this off-but I take this very seriously. It's not just about making sure you pay your bills on time, do errands, remember passwords etc. etc.-all of that is remedied by making lists (which I did months and months ago-lists upon lists-and still use).
But it's having conversations, creating art, engaging in life. When those neurotransmitters are on the blink, the light goes out, and all of a sudden I'm in a void.
Many people have this experience after emotional or physical trauma and that rings true for me too. But I'm still taking my "chemo", and the drug is still affecting me in this way-on top of the emotional, physical trauma, and all of the drugs that I had in the hospital and all of the xrays, and cat scans.......
Somehow I think there is a different answer to all of this. How interesting would it be for everyone who has "chemo brain" to just say "okay-I don't really fit into the life I had before, so I think I'll create a new one-one that allows for "chemo brain" . Why are we as a society so insistent on making sure everything goes "back to normal", when in reality, there is no normal, there just "is"-in fact-I wrote a blues about that back in the 80's called "It Is", because that's what our lives are about-whatever "it is" at the moment.
I'm interested in reading about the what's and why's of chemo brain in these books, and maybe I'll have a different viewpoint when I'm done. But my opinion is that "reality" is what is in my mind at any moment in time, and if my mind is experiencing "brown outs and black outs", then I have to go with that.
Or more literally-flow with that.....