I remember the first time I heard the term chemo brain. I was at work having a conversation with a colleague. We were discussing a project, and I had an unexpected lapse of memory. It was a quick little hiccup, something that happens to people all the time. My colleague, who had evidently seen a close relative experience cancer treatment, smiled at me and chirped, “Chemo brain?”
Oh, no. Not even close!
Into the Fog
Several years ago, I underwent a high dose chemotherapy regimen for systemic lymphoma called CHOEP. It had a number of side effects, one of them being chemo brain. You may already know or have surmised this refers to a reduction in brain function due to cancer-killing chemicals roaming around your body. Some describe it as a fog. That’s fairly apt, I suppose. Fog, sluggishness, forgetfulness, etc.
They tell you in the handouts not to make any major life decisions shortly after chemo. I definitely agree with that! You don’t want to be buying a house or making large investment decisions in the throes of chemo brain. If you can avoid it, I wouldn’t make any big decisions until after treatment has ended. I know that isn’t always an option. Still, ….
A Blanket of Dullness
From my perspective, the chemo brain experience felt odd and mildly disconcerting. That’s the best way I can describe it. The symptoms weren’t painful. It felt a bit like a blanket of dullness settled into my head. Thinking took longer, and sometimes didn’t work as I knew it should. Words could get lost temporarily. Reactions were slowed. These symptoms were especially prevalent during the first few days following an infusion. It’s funny. I was well aware things weren’t normal, but there was nothing I could do but wait for it to wear off.
On those fuzzy days, I remember spending quite a bit of time sitting on the couch watching bad television. I think it was bad TV. I HOPE it was bad TV, because I can’t remember the details. I’d hate to have wasted a good show or movie on chemo brain.
As a result of my fuzzy mind, I didn’t go to work during the first few days after my infusions. I wouldn’t have been any good to them. They’d probably have had to redo everything I worked on, anyway. Even so, I was lucky my employer was flexible and willing to allow me the time.
If you have that option, I’d take it. After several days, I was back to almost normal function and able to be a productive member of my work team once more. So, for the duration of my regimen, I took off a day or two every three weeks. That’s how often I received treatment.
Given the reduction in my physical reflexes from the chemo brain, I was pretty sure it wouldn’t be safe for me to get behind the wheel of a car. At the same time, I didn’t want to be a burden to my caregiver – my partner. And, if I’m being honest, I prefer to be self reliant whenever possible.
Now, I realize this isn’t available everywhere, but we have a well-developed public transportation system in our area. I used that to get to and from the infusion center. Don’t worry! My caregiver came with me at first to be certain I was able to manage the return trip. And anyway, I live only a couple of blocks from a subway station, making it easy. It was also pretty much a straight shot on one subway line – no changing trains in crowded stations, etc.
A Trip at the Grocery
Early in my chemo regimen, I decided it would be a good idea to stop at the grocery store on the way home from the clinic. (Did I mention you shouldn’t be making decisions right after chemo?) The first time I stopped in, I ran across an acquaintance from the neighborhood. I saw him, said hello, smiled, but no name would come. I mean my brain couldn’t even deliver a hint as to what his name might be. Seriously! I decided, then, to just keep smiling and walking, hoping he would forgive me later. He did look confused when I didn’t stop to chat, but he hasn’t asked me about it.
On my second visit to the grocery store after an infusion, I had a list ready to be sure I didn’t forget anything, groceries that is. The list included mustard. I made my way to the condiments aisle where I promptly got lost. Yes, that’s right – lost. Actually, it would be more accurate to say my consciousness left the building while my body stood in front of the condiments.
Suddenly, I found myself coming to out of some alternate plane still staring at the mustards. Realizing what had happened, I pretended to really scrutinize my choices (luckily there were quite a few). Then I picked one and walked calmly away as if it were completely normal for a person to spend a long time lingering over condiments. I hoped my demeanor conveyed that discriminating shoppers take care in such matters rather than what I was actually thinking which was “What the heck just happened?!”
I honestly don’t know how long I was standing there in a stupor, but nobody seemed disturbed by my behavior. Thank goodness! That was, however, the last time I visited the store immediately following my chemo appointment.
A Change of Pace
It wasn’t just names that became difficult to remember. Words of all kinds were sometimes out of reach just as I wanted them. I was usually able to find an acceptable synonym, but the situation had a definite effect on my conversational skills. That meant email and text was an easier way for me to communicate, especially if it was important. I could take my time to find the words I needed before hitting send.
At home, though, email and text weren’t realistic options. So, the pace of our chit chat over dinner, for instance, slowed considerably. As the weeks passed, I could see my partner becoming more and more impatient with me when I sometimes struggled to get the right words out, not just any words.
Finally, my partner lost his struggle with patience and began finishing my sentences for me. That was NOT a good development. As well as he knows me, he still isn’t a mind reader. After enough wrong guesses on his part, we had to have a serious heart-to-heart! I managed to impress on him how important it was for me to finish my own sentences, however long that might take. Just because I had a temporary, chemically-induced foggy brain did not mean I couldn’t communicate. This was an adjustment neither of us expected but was necessitated by the treatment.
For better or worse, though, we’re now back to our old conversation speed. It took a few weeks for the fog to clear fully, but it did. Overall, the experience with chemo brain was, as I said before, odd – sometimes frustratingly, sometimes hilariously so. I’m glad it’s over, but I’m also glad the chemo successfully beat back my lymphoma. It left me in remission, and that was a very welcome result.
So, that’s my chemo brain experience in a nutshell. I know not everyone is affected in exactly the same way, and different regimens have varying side effects. What about you? I’d love hear your thoughts on chemo brain.