The only reason I’m writing this is because I need to stay upright for a few minutes. I skipped the ondansetron (anti-nausea) this morning thinking I would be just fine…
And I was wrong about that.
On Monday I saw the oncologist and learned that I am not on a 28-day course of temozolomide. She would actually like to see me stay on chemo indefinitely.
“Like 5 years?” Were her exact words. She was wearing a mask, but I could tell by her eyes she was smiling. Her voice was upbeat. I appreciate that about her. She sees cancer patients all day long, and she can still pull off hopeful every time I see her.
I don’t know if I can do chemo everyday for five years. But I do think I can do it every day until November when I have my next MRI and re-evaluate. Maybe, as she suggested, we might have to lower the dose. I’ve also wondered about the possibility of having the weekends off at some point down the road. So I have something—anything—to look forward to.
I also said, “Maybe I’ll be able to tolerate it better after my body adjusts.” Honestly, I think I was possessed by the ghost of toxic positivity when I said that though.
As I tweeted earlier today, one of the things that keeps me going is knowing that I have chosen chemotherapy (at my oncologist’s recommendation) and I can unchoose it at any time. Any morning, I can just wake up and say “Not today, Satan.”
But I do sort of need to not live the rest of my life in bed. I tried to Zentangle yesterday, and it didn’t go well. My hands still don’t have much in the way of grip strength and the weakness leaves me with shaky, uncontrolled lines. The double vision also frustrates me. So I don’t know… I want to get back to posting the occasional video on my YouTube channel but I will have to figure out something. Because the old way of doing things, with significant editing, just isn’t going to work for me right now.
In other, happier news, I am kind of excited to report that I’m getting this robot vacuum tomorrow. I am fully embracing that I can’t vacuum anymore. And I can’t expect Dan to do #AllTheChores around here. As I’ve mentioned he has a disabling chronic condition too. So fingers crossed the vacuum will help us out some. I don’t get any peace at all looking around the house and wishing I had the energy to make it cleaner.
So how does a couple living off of one person’s disability income afford a robot vacuum, you ask? They don’t. They get help from people who care. My sister-in-law did the research on which one might work best and cost least, and then she and my brother contributed funds to help me purchase one, which gave me the guts to push my GoFundMe and Amazon wishlist again, and you know what? People always come through.
A lot of how I adapt to being on chemo long-term is wrapped up in me finding solutions to make things easier. In non-pandemic times, that might look like me hiring a cleaning service. But on active treatment in a world where people think wearing masks infringes on their freedoms more than them not wearing a mask infringes on my freedoms? Robot vacuum it is.
Anyway, I am once again getting too tired to keep thinking of words. If there’s something you want to know, ask me in the comments. Until next time. If you’re in the U.S., Happy Labor Day weekend. I hope you have some time off to relax.