Wednesday, November 28, 2012

Your Mind on Chemo

Mentioning chemobrain to a group of cancer survivors is the equivalent of yelling "FIRE" in a crowded theater.
             Yesterday it was impossible to miss the collective shouting when the Radiological Society of North America (RSNA) announced the results of a small study demonstrating the physiological process behind the symptoms that plague so many of us.
             Now there is a scientific explanation behind that freaky and disabling symptoms that make up the word "chemobrain." While sometimes used derisively, sometimes jokingly, sometimes teasingly, there is now no getting around the fact that administering chemotherapy causes significant and demonstrable changes in brain metabolism.
            Makes sense, you think.
            And it does.  But common sense isn't science; and even those medical professionals who listened sympathetically to their patients had little to offer in return.  Part of the answer came in the way the scientists approached the problem.
            Instead of studying chemotherapy's effect on the brain's appearance, Rachael A Lagos, D.O., and colleagues at the West Virginia Univeristy School of Medicine instead looked at its effect on brain function through an analysis of PET/CT brain imaging results utilizing special software.

             What a difference that made.  The proof was in the scans where "statistically significant decreases in regional brain metabolism" were noted.  Those changes were seen in areas associated with contentration and memory.
             Long story short:  your brain has as much difficulty processing chemotherapy drugs as the rest of your body does.

By now you all know that Robert Bazell, heath/science correspondent and author of The Making of Herceptin covered the story for NBC Nightly News and a crew came to talk with me yesterday morning about my chemobrain experience.
             My experience may have been different from yours.  Mine may have lasted longer. You may have had sypmtoms that disappeared overnight.  I don't know how much of the cognitive problems I encountered can be attributed to chemo or simply the totality of treatment --  radiation, multiple surgeries, and tamoxifen, the ultimate in brain scrambling medications.  But I don't need a study or PET/scan of my brain to say that definitively about Tamoxifen.  After seeing this short and doable demonstration from a radiation resident (the RSNA study was a poster session, mind you) from just ONE aspect of cancer treatment is more than enough for me.

Exercise works for easing chemobrain. Truly does.
Now where we need to go is to continue the discussion on working through the disability. That's why the crew filmed the additional segments that they did.  Those weren't random.  Both cycling and quilting were activities I took up AFTER treatment to help cope. There is no doubt that physical exercise, intense aerobic activity, is one of the best possible things you can do to cope with chemobrain, fatigue, and regain strength and vitality.  Taking up quilting involved learning a compelte new set of tasks, and yes, not seriously injuring myself or anyone else when using a rotary cutter.  A third way to help anyone suffering cognitive impairment would be assistance with organizational skills.  Anyone who knows me and looks at my waning organizational skills can attest to that. A good text on ADD probably woundn't hurt either.  Stress management is also key.

Quilting is something I took up after cancer's soemthing creative and stress managment all in one. Here I'm using English paper piecing of 3/4" hexagons. There's no way to machine piece them accurately.

With Debbie Strauss of NBC News.

          When I watched both the broadcast and web footage last night  I was reminded that for many of us, the cancer itself wasn't a problem but recovering from treatment WAS.  While we were talking I told correspondent Debbie Strauss that during those difficult months I remember staring at a blank piece of paper trying to write a simple paragraph.
           A paragraph.  Something I used to do in my sleep.  Something I could do upside down or inside out.  No, writing a paragraph has never been the same.  But never has the sense of accomplishment carried such a sweet ring, either. And that will always be enough.

More where this came from:
Reserarchers Find Evidence of Chemobrain
Healing from ChemoBrain Gradual

BoingBoing: Chemobrain....Isn't All in Your Head

Great blog on chemobrain  AnneMarie Ciccarella and this recommendation: Your Brain After Chemo, by journalist Idelle Davidson.

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njbookwoman said...

Interesting post and tv interview on an important topic and study results.
You did a very nice job!

I've been on chemo for 3.5 years (and I'm happy it is keeping me going.) It would have been nice to have some mention of what this all means for the metastatic population, particularly those of us with triple negative or those with resistant ER+ disease who have only chemo as a treatment option.

AnneMarie said...

Thank you again, Jody for the shout out! I love that the chemobrain segment (with your picture!) was in the intro. Great Job!

Nancy's Point said...

I don't need any more proof that chemobrain is real. I know it is, but it's wonderful to see it finally being taken more seriously. As you stated, now we need to help people work through the disability. This is yet another reason there should be survivor plans, more follow-up or whatever you want to call it. Thanks so much for sharing your experience on the NBC Nightly News the other evening. Awesome job!

Anonymous said...

Hi Jody
I agree with Nancy that I didn't need proof to know that chemobrain existed, yet I am so glad that it is getting in to the main stream news and that you did this wonderful interview so those who don't know about it especially going through chemo right now start to understand it. Thank you for doing such a great interview and sharing this with us!

itsthebunk said...

YES! Thank you again for everything you are doing, dear Jody, to shine the light on the entire cancer experience. I can't wait to find the link and watch the piece.

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Unknown said...

Hi Jody,

I can't believe I never commented on this blog post (please forgive the double negative!). I saw this segment when it first came out and meant to send you a note telling you 1) what a thrill it was to see you featured on NBC Nightly News, and 2) how much I valued your blog post on this subject. As usual, you've written about something that affects so many of us with insight and intelligence.

I really appreciate all that you do.

Unknown said...

...and thank you for the nod to the book!

Unknown said...

I am looking forward for your next post, I will try to get the hang of it!

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