The return of Chemo Brain
I had my final appointment with my oncologist recently. He is great - very intelligent and caring, if a little bit socially awkward at times - but sometimes his biases are obvious.
"So, how are you feeling?" he asked.
It's a pretty standard question and to be fair everyone I have seen recently has asked me this same question in one form or another. I think it springs from an abundance of caring about me (or about others in general) coupled with recognition that I have come through some pretty harrowing stuff to get where I am today. I respect the people who ask me this question too much to not be honest.
"Physically I'm doing pretty well," I told him. "I have a little bit of neuropathic tingling in my hands and feet and some loss of dexterity but my energy level is good and I'm back at the gym. My brain is not recovering as quickly though; I have frequent lapses in memory and cognition."
"Well, you've been through a lot this year - physically, spiritually, and emotionally..." he started, but the look on his face told me there was a but coming.
I didn't have to wait long.
"But there's no evidence of chemo brain as a thing, despite how many patients claim to experience it," he concluded. That's one of his biases, I realized.
"Okay," I responded. "But I know how I feel and I wouldn't feel safe doing my job with the way my brain is working."
That's the real crux of the matter, you see. I can do a lot of things pretty well and most people that talk to me would have no idea that there are big, black holes in my mental landscape that open up without any warning.
For example, I wanted to make some soup for myself one day. I went to the pantry, got a can of soup, then went to the kitchen drawer where we keep the can opener and retrieved that.
Hole. Big, deep, perfectly black hole.
I held the opener in my left hand and the can in my right hand and could not figure out what on e had to do with the other. I knew what each of the items was called and what their purpose was, but the connection between them was just... missing. I put them down on the counter and sat down for a few minutes, playing a mindless puzzle game on my phone until the connection was made.
I encounter these holes when I'm assembling words into a sentence as well. I get a subject, then a nice, juicy verb and maybe even a matching adverb to spice it up, and then I start to assemble the predicate... and then I encounter another one of those holes. There is a word - maybe a small and simple word - that I know belongs after the words I've just said, and there are words after that word, but for the life of me I can't even guess what the word that is missing might be. And where I would previously have thought laterally and come up with a different word or just changed the way the sentence ends, I just... STOP.
Full stop. Nothing after the missing word exists, even though I know that words do and I even know what they are. But the hole has become a deep, dark chasm, stretching to each side as far as my mind can conceive. The hole is a wall and I can't break through it, so I stand there looking into someone's eyes as I wait for my brain to either fill in the hole (or break through the wall), or to just give up and change the topic.
Yeah... that's the way my brain works these days.
"I've had other patients like you," my oncologist explained. "Intelligent, high achievers. You know - doctors, lawyers, researchers. I think that people like you are just more sensitive to slight changes in the way your brains work because you are so good at using them."
Cool. So he thinks I'm intelligent - that's nice. But he still doesn't think that what is happening with my brain is a real thing, even though he says he's had other patients like me who have the same complaints. That makes my brain hurt, all on its own.
But it doesn't really matter what he thinks - I know what's going on with my brain.
Take writing. I've mentioned this before (I think), but writing a brief blog like this would have taken me half an hour before I received chemo. Now? I've been trying to write this for ten days now. I've probably spent six hours writing these thoughts, way more time than I would have taken previously.
But at least I can still write. I haven't been able to read for about six months.
I mean, I can still read - I just can't read stories. I can recognize letters and identify words and can even read a whole paragraph and (more or less) recall everything in that paragraph. The next paragraph... is a struggle. I can read the first sentence, but when I start the second I forget what the first sentence said. I re-read it and then forget what it said before I can read the second sentence. I persevere though and can get all the way to the end of the second paragraph... by which time the first paragraph might as well have been written in ancient Greek.
By the time I get to the third paragraph, the words just look scrambled on the page. I become mentally exhausted and have to put the book down. It would be pretty hard for me to read medical articles and write therapeutic summaries if I can't even get through the first paragraph!
This sucks. But just like I've said about everything in this blog, it could be so much worse.
I'm still alive. I can still enjoy so many things in this world even if I can't read and struggle to write. And my brain will recover, but even if it doesn't I'm still alive.
So I have chemo brain, no matter what my oncologist thinks about whether it even exists. And it may be frustrating, but it won't kill me. I just need to be patient and exercise my brain as much as I can. But if I'm talking to you and I seem to blank out, be equally patient with me as I work my way through it.
"So, how are you feeling?" he asked.
It's a pretty standard question and to be fair everyone I have seen recently has asked me this same question in one form or another. I think it springs from an abundance of caring about me (or about others in general) coupled with recognition that I have come through some pretty harrowing stuff to get where I am today. I respect the people who ask me this question too much to not be honest.
"Physically I'm doing pretty well," I told him. "I have a little bit of neuropathic tingling in my hands and feet and some loss of dexterity but my energy level is good and I'm back at the gym. My brain is not recovering as quickly though; I have frequent lapses in memory and cognition."
"Well, you've been through a lot this year - physically, spiritually, and emotionally..." he started, but the look on his face told me there was a but coming.
I didn't have to wait long.
"But there's no evidence of chemo brain as a thing, despite how many patients claim to experience it," he concluded. That's one of his biases, I realized.
"Okay," I responded. "But I know how I feel and I wouldn't feel safe doing my job with the way my brain is working."
That's the real crux of the matter, you see. I can do a lot of things pretty well and most people that talk to me would have no idea that there are big, black holes in my mental landscape that open up without any warning.
For example, I wanted to make some soup for myself one day. I went to the pantry, got a can of soup, then went to the kitchen drawer where we keep the can opener and retrieved that.
Hole. Big, deep, perfectly black hole.
I held the opener in my left hand and the can in my right hand and could not figure out what on e had to do with the other. I knew what each of the items was called and what their purpose was, but the connection between them was just... missing. I put them down on the counter and sat down for a few minutes, playing a mindless puzzle game on my phone until the connection was made.
I encounter these holes when I'm assembling words into a sentence as well. I get a subject, then a nice, juicy verb and maybe even a matching adverb to spice it up, and then I start to assemble the predicate... and then I encounter another one of those holes. There is a word - maybe a small and simple word - that I know belongs after the words I've just said, and there are words after that word, but for the life of me I can't even guess what the word that is missing might be. And where I would previously have thought laterally and come up with a different word or just changed the way the sentence ends, I just... STOP.
Full stop. Nothing after the missing word exists, even though I know that words do and I even know what they are. But the hole has become a deep, dark chasm, stretching to each side as far as my mind can conceive. The hole is a wall and I can't break through it, so I stand there looking into someone's eyes as I wait for my brain to either fill in the hole (or break through the wall), or to just give up and change the topic.
Yeah... that's the way my brain works these days.
"I've had other patients like you," my oncologist explained. "Intelligent, high achievers. You know - doctors, lawyers, researchers. I think that people like you are just more sensitive to slight changes in the way your brains work because you are so good at using them."
Cool. So he thinks I'm intelligent - that's nice. But he still doesn't think that what is happening with my brain is a real thing, even though he says he's had other patients like me who have the same complaints. That makes my brain hurt, all on its own.
But it doesn't really matter what he thinks - I know what's going on with my brain.
Take writing. I've mentioned this before (I think), but writing a brief blog like this would have taken me half an hour before I received chemo. Now? I've been trying to write this for ten days now. I've probably spent six hours writing these thoughts, way more time than I would have taken previously.
But at least I can still write. I haven't been able to read for about six months.
I mean, I can still read - I just can't read stories. I can recognize letters and identify words and can even read a whole paragraph and (more or less) recall everything in that paragraph. The next paragraph... is a struggle. I can read the first sentence, but when I start the second I forget what the first sentence said. I re-read it and then forget what it said before I can read the second sentence. I persevere though and can get all the way to the end of the second paragraph... by which time the first paragraph might as well have been written in ancient Greek.
By the time I get to the third paragraph, the words just look scrambled on the page. I become mentally exhausted and have to put the book down. It would be pretty hard for me to read medical articles and write therapeutic summaries if I can't even get through the first paragraph!
This sucks. But just like I've said about everything in this blog, it could be so much worse.
I'm still alive. I can still enjoy so many things in this world even if I can't read and struggle to write. And my brain will recover, but even if it doesn't I'm still alive.
So I have chemo brain, no matter what my oncologist thinks about whether it even exists. And it may be frustrating, but it won't kill me. I just need to be patient and exercise my brain as much as I can. But if I'm talking to you and I seem to blank out, be equally patient with me as I work my way through it.
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