Chemo Brain – what it is really like
I have been asked many times about chemo brain, what it feels like, how long does it last and how do I cope with it. In a nutshell, it is debilitating, overwhelming and deflating and can last forever. It consumes an otherwise perfectly normal functioning brain and turns it into a haze covered, word searching, memory losing organ that can be flabbergasting and embarrassing. The following is my journey with chemo brain.
On September 9, 2017 I received my last drop of chemotherapy. I had completed four grueling rounds of what my doctor referred to as the, “nuclear bomb” of chemotherapies, Hyper CVAD with Rituxin (R-Hyper CVAD). It is a brutal concoction of numerous drugs dripping for a period of 5-7 days per round. To understand how awful this regimen was, I would check into my local oncology floor at the hospital on a Monday morning and would be discharged on either a Friday evening or Saturday morning. I did four rounds of the nuclear bomb following 8 months of a trial drug used in combination with an immunosuppressant drug. My body and my brain were fried following that year.
But what is chemo brain? And more importantly, what does it feel like?
Chemo brain is among other things a depletion of oligodendrocyte precursor cells in the white matter of the brain that lead to a persistent deficit in myelination and cognitive deficits. That’s the clinical answer, the more understandable answer is a feeling of being in a fog, unable to remember what you were doing or what you had for breakfast an hour after you finished eating, and in my case it also meant the inability to recall or form words.
For me, I likened chemo brain as to what I thought a person might feel like after suffering a stroke. I could not, for the life of me get my words from swirling around in my head to hit my tongue so that I could speak them. I had trouble at times making sensible sentences and would draw a blank over complex and easy words that I had used my entire life.
My brain would get tired causing severe fatigue requiring me to take lengthy, daily naps. I would forget what I was talking about mid-sentence and simply stop speaking, hoping to have some words fall to my lips, nearly breaking out in a sweat when they didn’t.
I found myself speaking the words I swore I would never rely on, “Sorry, chemo brain.” And try to laugh it off when in reality I was mortified that I had succumbed to that depth. Nothing I did would make my words flow better or my memory more reliable.
I started isolating myself, perhaps not noticeable to some, but it was to me. I didn’t want to have to try to remember people’s names when I was out in public – I was embarrassed and didn’t want my friends to feel bad or pity me. People looked familiar and I could sense I had long history with them, but I could rarely connect a name to a face.
My job suffered as I could not recall clients, cases or conversations. Working in a law firm it was critical that I kept exceptional records and that mistakes were rare. I became fearful of being able to keep my job due to my disabilities.
My family was supportive but I could tell there were times when even my husband and kids would get frustrated with my inability to articulate what was on my mind or remember things about the recent past. There was a time when my husband tried to encourage my memory by not telling me things I should remember, “No, I’m not going to remind you what we watched last night.” “You should remember what we had for lunch.” Fortunately, this tactic was very short lived as it was painful to me and I sunk lower in my confidence. It seemed that I had decent long term memory but my short term memory was nearly completely amnesic. I was sinking in all respects of speech and memory.
How I combated my chemo brain
I had worked through my entire treatment, bringing my laptop, iPad and phone with me to all my appointments and hospital stays; it helped but it still didn’t curtail the chemo brain in its entirety. I had learned that what happened to the brain during high doses of toxic drug use was that the neurons and synapses were affected causing weakened connections or misfires. What this meant to me was that I had to somehow re-wire my brain to get my function back to where I wanted it.
No one told me this, I have simply been a persistent researcher who was unwilling to let this foggy, lack of memory and inability to speak become my new norm. I started putting together puzzles and doing crosswords. I read as much as I could until the fatigue would take over. I wrote important names and numbers, dates and information on sticky notes and plastered them to my computer and in files at work. I would play little memory games of whose number was on the caller ID at work, or what client matched with what accident date (I work in a law firm doing personal injury work). And I learned to ask leading questions when I couldn’t place a person or event, finding that the more elaborate answers I could elicit the better chance of me connecting who the person was.
I stopped giving myself the excuse of “Sorry, chemo brain” and just accepted my lapses in memory and speech. I learned to pause when I would get stuck; remembering that the person listening to me very well might think it was intentional.
Where am I now?
I still receive immunosuppressant infusions every two months but have not had chemotherapy now for 18-months and my progress is coming along nicely. The fog has lifted completely. I am not sure when, and no surprise, I actually cannot remember it lifting I just know that one day I looked back and it was no longer with me. Perhaps that was a benefit of the short term memory loss. The haze that once covered everything around me had simply vanished as quickly as it came on; I didn’t care to ever think too much about when or how it actually left, just that it did.
My memory is coming around with my long-term memory still being intact and my lack of short term memory being less of a burden. It is still noticeable, most prominently when I am tired or stressed, both of which I try not to allow. I insist that I get a minimum of 8 hours sleep every evening and I usually get an hour or two nap in after dinner. It’s weird to do that but it is necessary for my cognitive health – it is my new normal.
As for my speech, it is back with flying colors. I still stumble at times, again more noticeably when I am tired or stressed, but for the most part it is really good. Interestingly enough, I actually think I am using better words that I did B.C. (before chemo). I am not sure if it is because when I retrained my brain I did it with adult types of books and literature, as opposed to when I was first learning to speak as a child and learned on a childish level. Regardless, my vocabulary, which was always good, is much better now. I feel I have a clear, articulate and vast selection of words at my disposal and I smile every time I use them. Sometimes I even applaud myself out loud when I use an exceptionally good word.
For the most part I have come through my chemo brain fairly well with most of my faculties intact and the deficits being less and less. I have read that retraining the brain after a stroke is only successful for about the first two years; I will be curious to see if my self-proclaimed retraining after chemo brain tapers off the same way.
I know I will also have some continued deficits; it seems that where my words are rallying my short term memory recovery is slow and my fatigue is lasting. But it is who I am now, my new normal. I have learned to take my stumbling in stride and not to be too harsh on myself. And those who know me and know what I have been through seem to give me a pass; we generally just laugh when I goof up on a word or cannot seem to remember how to pronounce something. And my husbandnis still my biggest supporter and stopped his “tough love” regarding my memory as he could see it was not working.
Life with chemo brain is a real roller coaster and unfortunately it is a disability that cannot be seen. As a person who is afflicted with it I can say that all we need from the rest of you is your patience and understanding, and an occasional nudge with a word or two.