Of all the thing I've lost, I miss my mind the most. -Unknown
It's been 4 years and I still struggle with my memory. I'll never forget being in the hospital getting my first week of chemotherapy and feeling like my brain was complete mush. I forgot things as soon as they entered my head. When I mentioned it to the nurses they just sort of giggled and said, "Oh that's just chemo brain".
Because they laughed it seemed like it was just a small problem but I was horrified. I assumed it was only temporary but as I looked into it, it seemed to be less and less so. I spoke with a woman 2 years post transplant and she kind of lightheartedly laughed about it too. She told me that it hadn't really gotten better, she had just learned ways to cope with it.
I was not impressed.
When I was zipped off to my new life in the hospital, I was in the throws of academia... now I apparently can't even spell academia right.
Some people get angry when they are told after chemotherapy that they'd never be able to have children. Well, they told me that and I wasn't bothered. I was, on the other hand bothered that I wasn't told that my mind would be altered. It was like a little joke of an after thought.
Even as I write this it makes me really angry. I realize there wasn't a choice, I needed treatment or I would have died but really?
*crack out the violins because I'm going to whine*
My mind was my greatest asset. I am smart. My memory was like a steel trap. I could learn thousands of facts in a day and ace a university exam that afternoon. My grades in my classes were at the very lowest %92. Usually I was %96 and higher and I worked hard for it. I often wondered how high my grades could get if I wasn't single handedly raising my three sons at the same time. I excelled under pressure and had honed my skills to ace the GMAT exam, I wanted nothing lower than %100. I was a multi-tasking Queen.
My memory made me feel powerful.
After my three rounds of chemo before my transplant, I retrained my brain to be able to read again. At first my eyes couldn't focus and I was reading the words blurry eyed but after a few weeks I was reading at a normal speed again.
After the transplant is another story. I received the highest doses of chemotherapy possible to prep my body for the stem cell transplant and my mind went with my old immune system.
When I was home and it was still early days I watched an episode of Judge Judy where she was yelling at someone, "would you rather be stupid and have your morals or smart and no morals?" I was so scared and unsure of whether I had either.
Things have gotten a lot better since then but my memory is still lacking. On my journey of finding out about chemo brain and it's effects I saw a neurologist who MRI'd my brain. I was not leaving anything to chance, I wanted my highly functioning memory back. She told me that there was no obvious damage... yet here I am.
She explained that they think it's like each cell in the brain being a little dehydrated. As a whole it's fine but each cell is just slightly withered.
I also learned that the effects of chemo on the brain was discovered by educated women who weren't happy about their diminished cerebral capacity. They complained and they complained hard and finally someone took notice. Everyone I spoke to assured me that it was real and not in my head. My inner response was, "Duh!" There's no need to convince me, but I guess the medical system was just catching on that chemo brain is real.
So, as I wait for the medical world to catch up, I constantly walk around in circles wondering what the heck I was looking for, or what the heck my post was going to be about?
Oh yes, my new coping mechanisms. Currently I am sticky noting a wall. I review that wall as I sit at my computer because I feel as if I have lost my head. I have personal theories that chemo brain is also wrapped up with early chemical induced menopause, because why else aren't the men complaining? For me, I know it's also tied into not being able to sleep but that's a whole other post. You can't make memories without sleep.
Shame on the medical community for treating this as a joke. My super powered, previously high achieving brain does not appreciate it. And comments like, "welcome to everyone else's world", when I lock my keys in the car for the hundredth time and kill my car battery because I left my lights on for the zillionth time, don't help either. Ditto to, "you're getting older, that's what happens".
So this has created new depth to that old saying, "Of all the things I've lost, I miss my mind the most."
I really, really do. And I'm really not sure what I'll do when that sticky noted wall has reached capacity.
*I'd love it if you could post your personal coping strategies for memory loss in the comment section. Then we can all benefit by sharing*