Chemo Brain: Losing Another Piece of Who We Are
Last updated: July 2023
My initial cancer treatment, back in 2017 when we thought I might be Stage II versus Stage IV, was the combination of Cytoxan and Adriamycin (also known as the Red Devil.) I had four 4-dose dense treatments spread out every 2 weeks. While I moved onto other medication once we discovered I'd been Stage IV from the beginning, I had a nagging sense that something was off, that I never really "recovered" from that experience.
Noticing chemo brain issues
For anyone who knows me, and if you've read any of my contributions on this site, I think it's rather apparent that words are really important to me. I've been a writer in various contexts for as long as I can remember and am a voracious reader (come follow me on Goodreads if you want and I'm always interested in book recommendations). My parents gifted me a shirt for my birthday recently that read "I'm silently correcting your grammar" and I'm sure the silently part was a bit of a suggestion.
I say this to help you understand that when I started experiencing the typical "chemo brain" issues (searching for words, inability to multi-task, executive functioning dysfunction, etc.), I was quietly terrified. I've been a trial attorney for several decades and my ability to think on my feet, communicate with clarity, and advocate for myself and others is a pretty core part of who I am. Cancer and the treatments take so much of who we are and how we define ourselves.
A test to pinpoint the problem
I didn't say anything to my team about these struggles, but consistently checked the box for memory loss and cognitive dysfunction on the checklist I filled out each time I met with my team. It wasn't until I was seeing an orthopedic doctor to address a sprained ankle from a fall that I was asked about these symptoms I'd been reporting. I hadn't hit my head in the fall, I think it was just part of his questionnaire to ensure that I hadn't harmed myself otherwise.
That ortho doc referred me to a neuropsychologist for neuropsychological testing. I can't fully or adequately explain how relieved I was that there was an actual test that would help them pinpoint and hopefully find some objective data to explain what I was experiencing.
When I asked the rest of my team, particularly my medical oncologist, why I hadn't been referred earlier, she looked me in the eye and told me that they hadn't seen any deficits despite my dutiful reporting about this symptom. I didn't realize how much I'd been able to hide.
A loss of functioning from chemotherapy
That neuropsychological evaluation was in a few different parts, so it took some months to complete. I'd been tested in the educational setting when I was much younger, so I had a general idea of what my IQ and other measures might be. I was nervous but did my best.
The report came back demonstrating a 20 point IQ loss in those areas of executive functioning that are typically affected by chemotherapy.
Now, I'm no genius. I don't qualify for Mensa or any of the organizations that cater to people who are super smart. Twenty points is a LOT of functioning that I'd lost. And, to make matters even more complicated, this loss of functioning had happened when I needed to be able to function better, to get a handle on this metastatic breast cancer thing.
The results were heartbreaking but also confirmed that I hadn't imagined the deficits I'd struggled with for so many months.
So, what did we do about it? Stay tuned for the interventions and outcome!
Advanced breast cancer is an isolating and lonely disease.