Chemo brain is one of the many side effects of chemotherapy that can affect us. If you have it, you may not even notice that you have it at first.
In July 2011 Barbara Carlos was diagnosed with stage 3 breast cancer. A resident of Hawaii, she works in administrative support at a college and has retirement as her career goal. Music keeps her sane, as side effects of chemo and radiation linger. Overweight since childhood, she keeps trying to lose the estrogen-laden fat that her cancer loves.
Chemo brain was one of the things I read and heard about as I was started my chemo. It seemed a ridiculous notion to me at the time. My brain was fine. I could think. In fact, I had recently spent a lot of time thinking about breast cancer and treatment options. True, my memory wasn’t what it once was, but we all reach a point when we occasionally forget where we left the keys. Chemo brain? What on earth were they talking about?
I had six rounds of chemo. About the third one, I noticed I was having difficulty thinking and making decisions. I chalked it up to being tired – really, really tired. I had difficulty sleeping starting with my surgery and lasting a good two years after radiation. Although I had cut back on my hours, I was still working my second job. I was also caregiver to my mother who had lung cancer and dementia. To me, my difficulty thinking and making decisions clearly seemed to come from pure exhaustion. There couldn’t possibly be another reason. Chemo brain? What chemo brain?
By the time my chemo ended, I had lists for everything, and I do mean everything. I had a list for my morning routine with a separate list for what I had to do to get Mom ready to go out the door to adult day care. There was a running list of general things to do and every day I would pick out two or three to go on another list of things I was going to try to accomplish that day. I had to set the timer on my phone to remind me to get the clothes out of the washer or the dryer, to take medicine, even to leave for an appointment. Multiple times a day, I would walk into a room and have no idea why I was there. I kept post-it notes in the car so when I got in I could write down where I was going for those times I forgot my intended destination while driving. Decisions were not easy to make. I am not talking about major decisions but simple things like whether to wear the black top or the white top that day. Cognition seemed to be a thing of the past. At work, I kept silently telling myself to focus, Focus, FOCUS, just pick a task, any task, get it done, and then try to decide on another task.
The scariest part of chemo brain was forgetting words. It happened a few times, just now and then. I have done crossword puzzles since I was a child. It was frustrating to read a clue, know that I knew it and not be able to recall the word. Sometimes the word would just pop into my head a day or two later which was just as frustrating as not being able to recall it in the first place. Then I started forgetting words in conversations with my boss, and with others at work. I thought I was losing my mind. Yes, it was chemo brain. It was only chemo brain. I knew it was chemo brain, but the rest of my brain was having panic attacks over the fact that I could not think, remember or decide. Living with my mother whose dementia meant she couldn’t think, remember or decide increased my fears severalfold. I don’t know how I got through some days. And since I couldn’t sleep anyway, I spent a good part of each night wondering about my ability to function as a contributing member of society.
Chemo ended. Radiation followed. Chemo brain stayed.
Short-term memory was the first thing to return. It took a few months, but I became better at remembering things. Words came next. A while after that, I was slowly able to focus more, and simple decisions became easier to make. I still use lists, but there are fewer of them now. I don’t forget where I am going when I am driving. I can think clearly, although there are occasions when I will have difficulty with a crossword clue. I am back to being decisive. My brain is working fine once again, but I feel at best it’s only 85 percent of its pre-chemo abilities. My attention span is getting better but sometimes, especially if I am the least bit tired, it’s a challenge to focus. My body still has side effects from chemo so why shouldn’t my brain? Over the last two years I have seen remarkable changes and healing in my body so it’s reasonable to think my brain will follow suit. I just have to be patient.
Recently, a co-worker who is on an aromatase inhibitor for her breast cancer told me that she has become forgetful and was blaming her medication. She asked if I had experienced forgetfulness when I started the aromatase inhibitor. I had to laugh. I started that medication in the short period between chemo and radiation. I had chemo brain then so I have no clue about the medication bothering my memory. I am still taking those pills and my short-term memory has improved over the last few years, so I would deduce that it didn’t/doesn’t affect my memory. But everyone is different, and whenever you take medication it is like you are conducting a science experiment.
The medical field isn’t sure what causes chemo brain. There are some who doubt its existence. I can assure you it is very, very real, as can anyone who has it. There are studies being done and more research needs to follow to come up with cause(s) and treatment.
Meanwhile, should you experience it, develop your own chemo brain work arounds. Recognize that it is part of your new normal, at least for a while. Deal with it like you deal with everything else cancer throws at you. Remember, this too shall pass.
And if you can’t remember that, just write it on a post-it note and put it in a place you’ll see every day.