Chemo Brain: Losing Another Piece of Who We Are

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!