At first, I thought it was just the acute stress of my Triple Negative Breast Cancer diagnosis. February 7th … I was on a train heading home, leaning my head against the freezing rain splattered window and crying. My GP had called the day before and said they had an appointment for me to see the surgeon asap. But I had a job to do … and I did it. That was the last presentation I gave.
My world fell apart in a medical whirlwind … biopsies, surgery, tests, tests and more tests, PICC line, chemo x 16, hospitalizations x 2 with 5 days in Emerg, countless blood tests. Vomiting, diarrhea, exhaustion, hair loss … and memory loss.
Like a stealthy thief, the chemo must have crept through the blood-brain barrier. They – the medical establishment – says that doesn’t happen, but this isn’t just a stressed brain. This is a brain that doesn’t function half as well as it did seven months ago.
Some call it a fogginess, where I would classify it more like quick sand. It’s like trying to run in water. You rail against the resistance, but it doesn’t move away. It sucks you down.
It was disguised as fatigue. I couldn’t get out of bed. Then I didn’t want to get out of bed. Then all I could do was write in bed (ahem). Some days, I feel like it’s the only thing I can do … put one word after the other on a blank screen. Writing is the one task I can cognitively move forward. Anything else needing one foot in front of the other is incredibly difficult.
I would never call myself a perfect housekeeper, but I had my limits on how messy things could get. Dishes got done, laundry got done, bathrooms were cleaned, and endless vacuuming thanks to my Husky.
But my limits slipped. I just couldn’t. Matt did his best to care for me, the dogs, our home while working at his part-time job. And right through chemo, I had to get up and drive him to work and pick him up. So I figured my brain and muscle power got used up. I was in survival mode, so I didn’t notice what was going on around me.
It’s like lack of motivation coupled with … oh, wait … what? SQUIRREL! Take notes. Plan. I can’t even …
Matt asked me to go to Tim Horton’s before his shift at work so we left 10 minutes early. I had already forgotten we were going to Tim’s by the time we reached the corner. My 19 year old son gently reminded me “Mom, don’t forget to turn right so we can go to Tims.”
Oh ya. Right.
It never got better. It got worse.
I wasn’t really told much about it. In fact, I was pooh-poohed away from thinking it was a big problem. Brushed aside as no big deal and something that would get better over time.
But it hasn’t.
At first I thought my inability to kick start was procrastination. Depression? Anxiety? Fear? Frozen? Lazy? Stress?
As I posted in The Resilience Factor I have my share of stress. And it just keeps piling on.
What do I value most over my breasts, my hair and my hands? My brain. My brain keeps us afloat. My brain earns six figures. And now I started to wonder if I can even do my job.
I researched and read. And became horrified. What if this is my new normal?
Breast cancer patients complain the most about chemo brain, so perhaps it’s the virulence of that Red Devil. Research at Stanford studied MRIs of women with breast cancer who underwent chemo vs. those who didn’t do chemo. “The results showed that women with breast cancer who were treated with chemotherapy had significantly reduced function in the prefrontal cortex, the area of the brain responsible for skills such as problem-solving, working memory and multitasking. Additionally, the chemotherapy group showed more perseverative errors and reduced processing speed. There was a significant correlation between reduced left caudal lateral prefrontal cortex activation and higher disease severity and increased subjective executive dysfunction in the women treated with chemotherapy.” (1)
That study was done in 2009. So they should have more data and information available now. I feel like I should have been warned. But why worry the patient? Let’s not tell her how bad life will be with post-chemo brain damage.
From another study:
Unexpectedly, all four drugs caused a significant breakdown in brain cell proliferation in the animal model. A statistical analysis of cell regeneration showed a 15.4 percent reduction in new brain cells following fluorouracil, a 30.5 percent reduction following cyclophosphamide, a 22.4 percent reduction following doxorubicin, and a 36 percent reduction following paclitaxel.
“It could be that all of the chemo drugs cross into the brain after all, or that they act via peripheral mechanisms, such as inflammation, that could open up the blood-brain barrier,” Gross said. (2)
There it is.
22% reduction in new brain cells following doxorubicin (the Red Devil).
36% reduction following paclitaxel (Taxol).
I had both … and noticed a definite loss of cognitive function in the last 3 months while getting Taxol. While I merrily danced around my IV pole, Taxol insidiously crept inside my brain.
Chemo not only killed my cancer cells … it killed my brain cells.
So what IS chemo brain?
- Memory lapses
- Trouble concentrating (can’t focus, have a short attention span, may “space out”)
- Difficulty multi-tasking
- Slow thinking
- Taking longer to finish things (disorganized, slower thinking and processing)
- Trouble remembering common words and names
- Lasting for weeks, months or years after treatment ends.
The more I read, the more terrified I become. What if it doesn’t get better? I will have to find a job writing, because that is all I can do. I have no idea how I would certify on Linux and write code. It has terrified me enough that I have an appointment to see a psychologist specializing in oncology in two weeks. I need to figure out a strategy to get my IQ back.
I look like I function, but I can’t deep dive anything. I can just skim the surface. Planning anything is just too hard a hill to climb. I live. I exist. I function. But I am not myself. My laughter keeps my fear and pain at bay. Not to say the crazy moments weren’t fun … but there are also other feelings lurking … anger, desperation, fear, resignation. I have to fight to keep the determination, sense of humour and hope.
But some days I lose hope.
I pray I don’t have to do a second, third, fourth round of chemo … the effects are cumulative.
Please forgive me if I am forgetful and seemingly flaky, I don’t recall what we talked about and may have a puzzled look on my face.