Chemo Brain: The Elephant in the Room

A toilet tank lever is not rocket science, and replacements come with directions. To fix one last week, I photographed how the broken part was situated. At the hardware store, I reminded myself of my mother who, early on with dementia, made shopping lists of labels cut from products. Then, new lever in hand, I figured out how to install it. Et voilà! I did it.

I repaired the lever on my toilet. And why is that something to brag about? For the same reason that I assembled a bicycle from a box of parts shortly after I finished one of the most important books I have read in this lifetime, “Your Brain After Chemo: A Practical Guide to Lifting the Fog and Getting Back Your Focus” by Dan Silverman and Idelle Davidson.

Chemo brain is real. If it is something you get to experience as part of the journey that cancer brings, you will negotiate your own relationship with it as it touches you. You will laugh, you will cry, you will make checklists and visual aids to stay on task.

Sometimes chemo brain goes away. Sometimes it does not. Then there is the middle ground. It goes away, but it shows up when we are tired. Or is that natural aging? Fatigue? Most of all, experiencing chemo brain in overdrive, even for a few months before things get better, is daunting. Perspective helps to build patience.

However, it was difficult for me to put chemo brain in perspective when I was in the middle of it. In the same way people do not talk about the elephant in the room, I did not talk about chemo brain. Mon dieu! I shied away from the topic even with the closest of friends.

My mother is the main reason I was hesitant to talk about chemo brain then, and she is one reason I have taken so long to bring it up. Zut alors! My mother had dementia of the Alzheimer’s type in later years. While I was going through cancer treatment and experiencing chemo brain, her dementia made me more self-conscious about chemo brain. Chemo brain is not dementia. But then again, it is not smooth sailing. Was mine foreshadowing?

A second reason I did not want to talk about chemo brain was my job. I could teach until the cows came home while fatigued, recovering from surgery or wearing pretty scarves. When I experienced a lung collapse, I lectured in a whisper. But what if, I wondered, I forgot a student’s name? (I invented visual rolls.) What if I forgot what I was saying mid-sentence? (I created PowerPoint lecture outlines for the students and for myself.) In my office, for all the administrative tasks I had to keep track of, I crafted color-coded checklists.

Being an absent-minded professor without cancer may be an OK stereotype. Being one with cancer who knows she needs to do her job well, and needs a focused brain to do that, is challenging — especially if you want to appear to be gliding through cancer treatment. Acting as if you always have your act together is hard.

Still, life goes on. While undergoing chemo, I wrote a book of poems, developed a new course, chaired my department and did a million other things, including managing my mother’s care and final days. While I may sound as if I am bragging here, chemo brain taught me to overcompensate. If you were to peer into my journal from the early days of treatment, you would see evidence of misspelled words, deteriorating handwriting and odd sentences with the words out of order. Fear not. There is always an elephant in the room.

This past summer, I participated in a study of cognition after chemo. I might as well have thrown myself off a cliff and climbed back up without the right gear. Can I memorize a list of ten words and repeat them back in the same order? The jury is out on that skill. I felt smart sometimes, taking the little tests, even above average, whereas other times I felt as if I needed a math degree to succeed.

All is not lost. I can repair a toilet, teach a complicated concept, face a new knitting challenge, reconnect with the French I learned in college, and make (even now) color-coded checklists. There is so much to accomplish in any given day. Thankful for each of these days, I trod on. Why not? La vie est belle.