Chemo brain
I hope this brief post makes at least a little sense. If it doesn't, well... look at the title and it might make sense why it doesn't make sense.
Chemo brain. If the Mayo Clinic calls it a thing, it's a thing. And although this post is short I wanted to share with you what it is like because it's kind of a hell of a thing.
I wasn't really sure whether I would get chemo brain, but on the Sunday after my first cycle of chemo (four days after my oxaliplatin and two days after my fluorouracil finished) I woke up at 10:30 AM, way later than I've been waking up. I walked out to the living room feeling like I was running the last mile of a marathon and sat in my chair for about ten minutes trying to figure out what I should do next. My stomach grumbled and so I figured I should eat something, but by the time I got to the kitchen (25 feet away), I had forgotten why I was there.
I looked around the room for clues. Dishes... okay. Food... right. Stove, fridge, microwave... this room has something to do with making food, right? For the life of me, the word kitchen would not spring to mind, and if it had I still might not have understood it.
"Would you like some breakfast?" my wife asked.
"Yeah. That would be great!" I said.
Together we made waffles and had strawberry sauce and whipped cream with them. They were delicious, but just standing for twenty minutes to make waffles exhausted me. I sat down to eat and I stayed sitting for the rest of the day.
I tried to take up my usual activities. Reading? I got through one sentence and realized I had no idea what it has said. I re-read it and still didn't know what it said. I put the book down. Writing? I tried writing a sentence in a short story I had started the day before. I forgot the protagonist's name and where the story was set. I went back to review what I had already written and came up against the same one sentence barrier I had with reading. Okay, so reading and writing were out.
Video games? No. Too much concentration.
Okay - watch some TV, right? Sure, except that all I really got out of it was some bright moving pictures that made as little sense as the first sentence of my book.
I was exhausted and my brain - sadly, probably my greatest attribute - was just no on board for the day. But as exhausted as I was, I wasn't tired, at least not in a sleepy kind of way. I closed my eyes and my brain sluggishly tried to process thoughts, stubbornly refusing to shut down so that at least time would pass with little fanfare.
Time did pass, and I went to sleep on Sunday night. I woke up Monday morning feeling a bit sluggish but better than the day before. Maybe 50% of normal whereas Sunday was at most 10%. By Tuesday I felt about 75%, and by Wednesday I was back to my usual energy (my new usual energy, that is, which is still not that great).
It's Saturday afternoon, three days after my second course of oxaliplatin and one day after my fluorouracil ended. Tomorrow could be an even bigger chemo brain day - I sort of feel it setting in already, earlier than it did last time.
The adverse effects from chemotherapy tend to get worse over the course of treatment. My bone marrow has taken a pretty major hit so far - my platelets and white blood cell count are down by about 50% from before chemotherapy and they will likely decline even further over the next six courses. The dysesthesia (tingling) that I experienced the first cycle were stronger this cycle, although the good news is that they didn't last any longer, still ending by three days after the oxaliplatin (which, according to my calendar, was this morning). So it's not really surprising if I get a little more chemo brain with each cycle.
I'm still not happy about it.
I haven't been bored in the five months since I underwent surgery. But I've been able to keep my mind engaged and focused on the task of getting better, and with chemo brain it's tough to engage my brain in anything. I was pretty bored two Sundays ago and I did not enjoy it.
Maybe I won't have much of an issue. Maybe... but if I do get chemo brain again I will just have to live with it for a day or two or three. And then I will get back to the important business of caring for myself. I'm still committed to doing everything possible to give me the best outcome.
But still... chemo brain. You don't want it - trust me.
Chemo brain. If the Mayo Clinic calls it a thing, it's a thing. And although this post is short I wanted to share with you what it is like because it's kind of a hell of a thing.
I wasn't really sure whether I would get chemo brain, but on the Sunday after my first cycle of chemo (four days after my oxaliplatin and two days after my fluorouracil finished) I woke up at 10:30 AM, way later than I've been waking up. I walked out to the living room feeling like I was running the last mile of a marathon and sat in my chair for about ten minutes trying to figure out what I should do next. My stomach grumbled and so I figured I should eat something, but by the time I got to the kitchen (25 feet away), I had forgotten why I was there.
I looked around the room for clues. Dishes... okay. Food... right. Stove, fridge, microwave... this room has something to do with making food, right? For the life of me, the word kitchen would not spring to mind, and if it had I still might not have understood it.
"Would you like some breakfast?" my wife asked.
"Yeah. That would be great!" I said.
Together we made waffles and had strawberry sauce and whipped cream with them. They were delicious, but just standing for twenty minutes to make waffles exhausted me. I sat down to eat and I stayed sitting for the rest of the day.
I tried to take up my usual activities. Reading? I got through one sentence and realized I had no idea what it has said. I re-read it and still didn't know what it said. I put the book down. Writing? I tried writing a sentence in a short story I had started the day before. I forgot the protagonist's name and where the story was set. I went back to review what I had already written and came up against the same one sentence barrier I had with reading. Okay, so reading and writing were out.
Video games? No. Too much concentration.
Okay - watch some TV, right? Sure, except that all I really got out of it was some bright moving pictures that made as little sense as the first sentence of my book.
I was exhausted and my brain - sadly, probably my greatest attribute - was just no on board for the day. But as exhausted as I was, I wasn't tired, at least not in a sleepy kind of way. I closed my eyes and my brain sluggishly tried to process thoughts, stubbornly refusing to shut down so that at least time would pass with little fanfare.
Time did pass, and I went to sleep on Sunday night. I woke up Monday morning feeling a bit sluggish but better than the day before. Maybe 50% of normal whereas Sunday was at most 10%. By Tuesday I felt about 75%, and by Wednesday I was back to my usual energy (my new usual energy, that is, which is still not that great).
It's Saturday afternoon, three days after my second course of oxaliplatin and one day after my fluorouracil ended. Tomorrow could be an even bigger chemo brain day - I sort of feel it setting in already, earlier than it did last time.
The adverse effects from chemotherapy tend to get worse over the course of treatment. My bone marrow has taken a pretty major hit so far - my platelets and white blood cell count are down by about 50% from before chemotherapy and they will likely decline even further over the next six courses. The dysesthesia (tingling) that I experienced the first cycle were stronger this cycle, although the good news is that they didn't last any longer, still ending by three days after the oxaliplatin (which, according to my calendar, was this morning). So it's not really surprising if I get a little more chemo brain with each cycle.
I'm still not happy about it.
I haven't been bored in the five months since I underwent surgery. But I've been able to keep my mind engaged and focused on the task of getting better, and with chemo brain it's tough to engage my brain in anything. I was pretty bored two Sundays ago and I did not enjoy it.
Maybe I won't have much of an issue. Maybe... but if I do get chemo brain again I will just have to live with it for a day or two or three. And then I will get back to the important business of caring for myself. I'm still committed to doing everything possible to give me the best outcome.
But still... chemo brain. You don't want it - trust me.
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