The only constant is change. I had appointments at Mayo on Friday. Just labs, a visit with my oncology team, and an immunotherapy infusion. I’ve been gradually perking up over the last couple weeks after a somewhat rough patch. “Rough” is pretty relative – I wasn’t laid up, I was still working and functioning, etc., but feeling pretty draggy. I think I definitely underestimated the Covid recovery time, for one. And we hadn’t dialed in my Gabapentin dose, which has subsequently pretty much stopped my hysterical nerve pain. I also skipped a few weeks of acupuncture and energy healing, due to schedules and travel (mine and theirs).
I continue to be fascinated about the effect these alternative treatments have on me. I pretty much feel nothing during or right after an acupuncture session. I’ll come out of an energy healing feeling calm, but not really noticing any physical change. I could easily assume these treatments are doing nothing – but then, if I pay attention, later I’ll notice both subtle and profound changes in my mood and how I’m feeling. My energy improves, a nagging pain goes away. The treatment in both cases is very straightforward – what symptoms are presenting today? Then we focus on that, by clearing blockages, sending energy, or placing needles (which could also be clearing blockages and sending energy). Both of these practitioners treat my full recovery as a fait accompli, tell me not to worry. It’s very positive and comforting.
Anyway, all this to say that for any number of reasons, I’ve been back to feeling quite good these last few days. On Friday, I brought no complaints for my oncology team. I asked how many people were on my trial at Mayo – I was surprised to learn I’m the only one left, as everyone else had to drop out because they couldn’t get their blood pressure or diarrhea under control. There are other participants around the country, but I’m currently the only one at Mayo. This news made me feel like a badass.
Then the oncologist came in (not my lead doctor, but someone on his team) and told me that my liver bloodwork was concerning, and starting immediately, I was to stop all of my cancer treatment and start taking prednisone to try to get those numbers under control. I wouldn’t be having an infusion that day, and I was to stop with the oral drugs. I need to have bloodwork drawn every other day (can happen in Mpls) and report back at Mayo on Wednesday to meet with their toxicity team. The assumption is that some part of my treatment is causing liver inflammation, and that’s bad.
I’m really quite surprised that this news isn’t stressing me out. I have questions, sure, like what does this mean for starting treatment up again. (I did confirm that this slight detour won’t disqualify me from continuing in my trial, if we get the numbers under control.) I’ve been thinking through anything that could have all of a sudden tipped the scales after months on these drugs. The numbers started trending up prior to my Covid diagnosis, so we can’t blame that. They said Gabapentin wouldn’t do it. It’s a mystery.
I’m rolling with it. I’m flushed and a little jittery from the steroids. My schedule has once again been completely destroyed, but luckily, we’re flexible. I’m hoping for the next couple weeks or as long as I’m off the cancer drugs that some of my drug side effects will improve, and maybe I can enjoy some good Thai food and sparkling water without intolerable mouth pain. That would be nice.