I have a hazmat suit in my home. To clean up any possible spills from the chemo pump I wear for 46 hours. I would have to put on the hazmat suit to clean up any spillage on the floor, counter, wherever. If it spills on the carpet or couch, the fibers will bind together and the item will be ruined. I imagine it would take the gloss off the flooring also, but at that point I didn’t ask. All I could picture was this stuff going into my veins.
I was given pages of physical side effects for each of the 5 chemicals I am being given. The chemicals are affecting every living cell in my body. Including my brain. But nowhere in the possible side effects is chemo brain ever mentioned. After all, it’s just a large organ in my body regulating my emotions and cognitive function… how I relate to the world. No biggie.
After the second chemo session, I asked to talk to a psychiatrist at the hospital so I could better understand what was going on inside my head. I was told that, sure, I could talk to a doctor about my brain, but insurance won’t pay a dime for that visit. I have great insurance. And I am at the premier hospital in the country for what I am going through. Doesn’t that just say a shit load about the healthcare industry in our country? Physical symptoms, you get a pill and tons of sympathy. But mental function? Ehh, don’t worry about it.
First issue to resolve was the TV volume. My husband glares at me and complains that I am going genetically deaf like my dad and uncles. But, no, that genetic gift hasn’t kicked in yet, just the chemo affecting the tonal quality of my hearing. If I am listening to TV and someone talks to me, the noise from each direction cancels each other out. I can’t understand a word being said. When I am around several people talking over each other, I sit quietly and smile, pretending to follow the conversation. I think about elderly people who stubbornly refuse to get a hearing aid and the joy they miss out on by not being able to follow a conversation.
Second and far worse for me is living in the dead zone. At least that is how it feels to me. I have no highs or lows for a few days after chemo. No sparks of joy from simple pleasures, but no crashing lows thinking about my own demise either. Just small panic that I might never come out of this zone, alive on the outside, dead on the inside. It doesn’t feel like depression, just a grey fog sapping me of my humor, and short circuiting my memory. This dead zone is the reason I haven’t written my blog lately. Instead of words and emotions flowing freely from my brain to my fingers, I get stuck… forgetting the point I was going to make… the next sentence I was going to write.
Chemo brain makes me feel as if I don’t exist for myself, just for others.
I have to stay alive so I don’t make others sad. It’s a weird way to live, but that is my life for about 10 days out of 14. When the emotions come back, it breathes life back into me. Yet the hearing stays muffled, the short term memory loss frustrating. But I am alive and others are happy.
Sometimes, I am happy too.
*I cannot emphasize enough that chemo affects everyone differently. This is simply my personal journey.
My granddog channeling Bon Jovi, “Half way there, Livin’ on a prayer,” to celebrate the halfway point in my first round of chemo. On March 25th, the end of my first round, I will be scanned to check if the tumors in my liver and colon have shrunk enough to remove surgically. Living on a prayer … and the doctor’s care.