While I blog and chemobrain is at the heart of this blog, I am the Lou Costello to Idelle Davidson's Bud Abbott. She asks the hard questions and I joke about the silliness. She is able to unravel the confusion and has come upon the best and most practical advice all of which is in her book, Your Brain After Chemo.
Idelle has graciously invited me to guest on her blog. We are “swapping” blogs for the day. Her appearance here comes at an appropriate time. Research information on two important studies was publicized in recent weeks. It may have gotten lost in the Ho Ho Holiday season. And now, Idelle:
May I be Rude? Cancer and Chemo Brain, GET OUT OF MY FACE!
By Idelle Davidson
When you write about “chemo brain” as much as I do, you’re bound to notice other blogs on the same topic. That’s how I lucked upon AnneMarie and this wonderful blog. Ours are different though. AnneMarie’s blog is more personal. She’s funny! When I read her posts, I laugh and applaud at the same time (does that count as multitasking?) whereas I write a bit less about myself and a bit more about the research and I share other people’s stories.
In fact, I’ve never been all that comfortable even acknowledging I had cancer. That may seem ironic, considering I’ve written a book on the subject. But in fact, my initial reaction upon hearing the diagnosis was that technicians in the lab certainly mixed up the samples and they were in big, BIG trouble!
That denial quickly morphed into anger. I was more than furious, I was insulted! How dare the cancer beast insert itself into my life! No one invited it there. I’m not a violent person but I wanted to rip cancer’s head clear off, I wanted to tear out its guts, I wanted to…I wanted to….well, I think you get the idea.
So I trudged along, fought through the fatigue and continued to work as a journalist. But it wasn’t easy. Cognitively I was a mess. Beginning shortly after starting chemo and continuing for months, I felt like a fog had taken over my brain. I couldn’t think straight. I couldn’t remember phone numbers, people’s names or calculate the tip on a restaurant tab. Whereas prior to chemo you couldn’t shut me up, I now spoke cautiously, fearful I would not be able to retrieve the words I needed. Things were off kilter spatially too. I got disoriented at shopping malls and bought a GPS when neighborhood streets suddenly seemed unfamiliar.
Yet, I never missed a magazine deadline. I’m kind of proud of that. I chalk it up to pure, unadulterated stubbornness. Cancer had done enough to my body, no way was it going to destroy my mind! And so I persisted, even though the stories that used to take me 20 hours to write would now take me 40 as I pored over my notes and agonized over every word choice, making sure the transitions between paragraphs made sense.
My oncologist discounted my concerns. It’s just stress, he said, don’t worry so much. But I did worry. Was this the beginning of Alzheimer’s disease? Was I losing my mind?
It wasn’t until I joined the Cancer Support Community (formerly the Wellness Community), that I realized I wasn’t alone. At the time – this was six years ago – the term, “chemo brain,” wasn’t taken seriously. People used it, but it was kind of like a throwaway joke. “Oh, I lost my keys again,” someone in my Thursday night group would say, “must be chemo brain!” We would all nod our heads and chuckle.
But there would be other stories too, ones that weren’t funny or cute or harmless: the mother who forgot to pick up her kids from school; the retiree who left something cooking on the stove until his kitchen filled with smoke; the college student who could no longer take notes and listen to his professor at the same time and worried his grades would suffer; the wife who said her husband ridiculed her because she repeated herself; the lawyer who found himself unable to write a coherent memo; and the film editor who retreated socially because she couldn’t follow the thread of a conversation.
And then something truly amazing happened, something that validated what I had experienced.
In the fall of 2006, three independent groups of researchers reported findings connecting the dots between chemotherapy and cognition. Reporters picked up the story and articles appeared in major newspapers worldwide.
One group out of Japan used MRI (high-resolution magnetic resonance imaging) to show that regions of the brain involved in learning, intuition and reasoning had shrunk significantly in women who had chemotherapy.
A second group from the University of Rochester in New York directly linked chemotherapy to brain cell death in humans and rodents.
The third group, led by Dan Silverman, MD, PhD at UCLA, used PET (positron emission tomography) scans to show that women who had received chemotherapy five to ten years earlier had decreased brain metabolism. This affected their ability to perform memory tasks.
When I dug further, I learned there had been an even earlier study out of MD Anderson in 2004 that was just as significant but had not been publicized the same way.
For me, this was all an “Ah ha!” moment. I realized this information needed to get out beyond the medical journals and newspaper science columns. And so I contacted Dan Silverman whose university office was near my house and invited him to co-author a book with me. Long-story short, within two years we had completed, “Your Brain After Chemo: A Practical Guide to Lifting the Fog and Getting Back Your Focus.”
How is my cognitive health these days? I am happy to report that I am about 90 percent back. I still have some issues but I practice what we preach in our book in terms of nutrition and lifestyle and I’ve tried some experimental things as well, such as neurofeedback. I’m pretty sure that researching and writing the book helped too.
It has been quite a journey. Although I haven’t quite gotten to the acceptance stage, I’m not as angry anymore. I have to say, I’m mindful of the improvement.
Thanks, AnneMarie, for sharing your blog space!
Idelle Davidson is co-author (with Dan Silverman, MD, PhD at UCLA) of the highly acclaimed “Your Brain After Chemo: A Practical Guide to Lifting the Fog and Getting Back Your focus.” She is an award-winning journalist and the recipient of the 2009 Pillar of Strength Award from the Cancer Support Community. See her blog and website at www.YourBrainAfterChemo.com.