Jane is a ten-year survivor of a very rare form of cancer Myelodysplastic Syndrome. She has enjoyed several exciting careers including a librarian, counselor, teacher, and writer. She loves to write about surviving cancer, overcoming hearing loss, and her hearing ear service dog, Sita.
Yes, some of it is. For years before chemo, I have gone into a room and forgotten why I was there. I have never been good with names, and it has gotten worse. But chemo fog is different.
I was leaving the drive through at Wendy’s and glanced down at the passenger’s seat. My drink was in the cup holder, but where was my taco salad? I groaned as the person working in the drive through knocked on my window. I asked her where my “stuff” was. Alas, I couldn’t remember the word for “food.”
She answered that I had left it on the shelf and forgotten to pick it up. She retrieved it for me and I thanked her profusely before driving off feeling embarrassed.
Before chemo fog, I would have laughed this whole incident off. It had been a long day, because I had flown from Boston to Cleveland, got into the airport late, and then had an hour drive home. But now I knew it had a lot to do with “chemo fog,” also known as “chemo brain.”
Think of all the mental processes one goes through at a simple drive in transaction — pulling up to the order screen, deciding what you want, driving up to the window, getting out your wallet, taking out your money, putting your change and money away, then remembering your drinks and meal. All this sounds simple, but it really is not.
Add to this a chemo fog, where every simple action is being done slowly, like a dense fog has covered your brain. You have to think of each step without skipping any, like driving off without your meal!
Another time, I was at the bank with a manager and we were trying to access my account. I couldn’t remember my own cell phone number! The manager who helped me was kind, but I am not sure he believed me when I explained about the chemo fog. How one does forget a simple item like a phone number that you give out several times a day? When I got home, I fixed this by putting my own cell phone number in my phone.
I worked as a counselor with people who had been diagnosed with TBI — traumatic brain injuries, sometimes named THI – traumatic head injury. They had typically suffered a stroke or accident which affected their executive functions due to frontal lobe damage in the brain. They would forget appointments, events and sometimes people. I would work with them on writing down appointments, keeping a notebook and consulting the book several times a day with the places listed they needed to be. I thought I understood what they were going through, but I didn’t until it happened to me.
I am convinced that as more research is done, the experts will find similar repercussions of THI and chemo on the brain. The research is just beginning, and hopefully there will be more to come. Almost everyone notices chemo fog that undergoes doses of chemo, no matter which kind. For years afterwards, cancer survivors say they don’t feel the same. For persons with blood cancers like mine who are on it forever, the consequences are even more serious.
Please do not tell me that this is all age. Yes, some of it is. For years before chemo, I have gone into a room and forgotten why I was there. I have never been good with names, and it has gotten worse. But chemo fog is different. It is truly a chore to process every single step. It is like a gray darkness, is covering you all the time. You search for words you always knew (like where is my food rather than stuff). And when you are tired the grayness is much worse.
We can work at solutions, however. We will always miss the brain the way it was before. But we can compensate by writing down appointments, making lists even for one or two things at the grocery store, and setting off alarms for important events. I have a calendar I look at every single day.
I do have to accept that being on lifelong chemo; I will never be the same.
However, this is not fatal. I can share the story with my family and friends about driving off without my food and laugh. I went home, enjoyed my taco salad with the chili and felt better. After all I was alive to enjoy and eat it!