My biggest fear in life has always been losing my mind. From the age of two until the age of four my grandmother with Alzheimer’s disease lived with us, and she terrified me. She didn’t know who we were. She didn’t know where she was. She didn’t know when it was. She would escape. She would have fits. It was a lot to process for a small child; I can only imagine what it must have been like for her, and then she died. For many years after her passing, I lived in fear the same thing would happen to me.
For the past few months I have been seeing a neuro-oncologist and a neuro-psychologist. For more than a year I have been experiencing what feels a lot to me like brain-damage, but only after a CT scan, where they identified a mysterious lesion on my brain, was I referred to specialists.
My two biggest cognitive concerns are that I can’t read the same way I used to, and my short term memory seems to be on the fritz.
The medical term for this is ‘chemo brain’. This name feels reductive to me because it recalls the playful nomenclatures that describe what happens to a woman when she becomes a mother—‘pregnancy brain’ and ‘baby brain’. I did experience lapses in short term memory when pregnant and transitioning into motherhood, and the cause of this could be linked to pregnancy hormones and lack of sleep. But after my daughter was born, and I started getting six hours to eight hours of sleep in a row, things went back to normal.
Chemo brain is an animal of a different species. My brain that once felt sharp now feels slightly mushy. I regularly experience lapses in memory, and when I look at a page of text my eyes panic like they don’t know where to look.
My memories used to record in HD picture and sound, but now they are like a Super 8 film with chunks of the reel missing.
I spent five hours undergoing rigorous cognitive testing, trying to push my mind to the limits—testing my memory, reading comprehension, physical dexterity, math skills, visuospatial intelligence, language ability, and the diagnosis was that I am “a very smart lady” with an “organized mind.”
Not helpful.
Because I tested either “above average” or “off-the-charts” in every category the doctors could not find anything wrong with me.
But as a teacher, I know standardized tests are horsefeathers. I have always been good at tests and I’ve taught students who could barely speak English how to pass their end of grade tests because taking a test is a skill.
Also as a teacher, I have learned to give myself modifications such as reading out loud or using something to underline the text I’m reading line-by-line. I also ask Siri to give me so many reminders that my daughter refers to her as my “robot friend.”
And even though I’m adapting, I acutely feel the loss of my former brain, and I don’t know when or if I will ever get her back.
Very little is known about chemo brain. The brain, being a universe unto itself, is difficult to study. They don’t know what causes it and therefore it’s not easy to treat. They have had some luck treating people with chemo brain using drugs used to treat ADD, but unfortunately that’s not an option in my case.
So here is my appeal to scientific researchers:
1) Please continue developing targeted treatments so cancer patients can stop poisoning themselves with chemotherapies.
2) Find out what causes chemo brain.
3) Find a way to either stop it from happening or to cure it.
4) And when you have a moment, please, think of a better name for this condition—something slightly more sciencey.
And lastly, my advice for other chemo brain suffers:
1) Make friends with the robot inside your phone. If you ask Siri to remind you of things, she will do it.
2) Take lots of notes.
3) Keep your calendar updated and check it every day.
4) Reduce the number of distractions when you are doing something that requires concentration.
5) Make a conscious effort to pay attention.
6) Talk to your doctor. They might help you benefit from cognitive therapy or medication.
7) Talk to the other people in your life about what you’re going through so they can support you.
8) Don’t be hard on yourself.
Do you suffer from chemo brain? Do you have any tips or tricks to help manage it?
