Went back to Mayo yesterday to meet with the toxicity team: my liver bloodwork is off, and the assumption is that the immunotherapy treatment is causing inflammation in my liver. So we’ve paused treatment, and I’m now on prednisone to reduce that inflammation. My toxicity team (like my oncology team and palliative care team) is terrific. All of my teams live on the same floor at Mayo and actually communicate with each other. Common sense yet revolutionary: coordination of care.
I’m not noticing any symptoms of the liver inflammation. I feel great, had plenty of energy for navigating the Mayo campus. The toxicity team tweaked some of my medication to better protect me from and prevent some unwanted steroid side effects (as steroids can reduce my immunity, irritate my stomach, etc.). I have narcotics for occasional nerve pain; I needed to shift to something that doesn’t have acetaminophen in it, so they prescribed morphine. (The doctor talked about my beloved Vicodin as an old and somewhat ineffective solution for my nerve pain – it actually doesn’t work well on this. Bob pointed out they’re switching me to “modern” morphine…)
In talking through the plan, it was clear that this is a bump in the road, not a derailment of my treatment – it’s not uncommon for someone to be on immunotherapy medication and then all of a sudden have an issue with it. I’ll just keep doing weekly labs, weekly video appointments with the toxicity team, and we’re already reducing the dose of the prednisone. It’s assumed that we’ll be able to keep decreasing that dose until we get to a point when we can restart treatment. Maybe in about a month?
I felt good throughout all of this – physically good, very comfortable with the plan, heartened that this is all just part of the process. Mayo was hosting a walk-in flu shot clinic, so we decided to take advantage of that while we were there. No need for a Covid shot quite yet, as we had Covid in early September. We also celebrated with chocolates from the Abdullah stand (whoops, that should be Abdallah, totally different) in the underground mall that connects the Mayo campus. Bagels from Bruegger’s for the drive back to Minneapolis. Oh, I remembered I’ve been craving a cinnamon roll, and look, there’s a Cinnabon right there.
I had a little nap when we got home. Continued to feel terrific through dinner and evening TV time. Everything blew up at bedtime. Nerve pain clamped onto my shoulder. The myriad steroid side effects, confirmed that afternoon, all came out to play: heart palpitations. The feeling that there’s a light film over my eyes. Jangly nerves. Munchies. Irritability. I couldn’t sit still to try to sleep, so I packed into the recovery lair with the TV. I hadn’t picked up the morphine, so I was working, unsuccessfully, with Ibuprofen and Vicodin.
So I didn’t sleep. The pain and palpitations were nominally better if I sat and sort of rocked back and forth on the edge of the bed while watching veterinarian shows. I tried a heating pad on my shoulder. I tried ice packs. I read that heart palpitations can be caused by low electrolytes, so I mixed electrolyte powder into water and drank all of it.
I had plenty of time to think about mistakes I made, and other factors leading to me wandering the house like a lumpy ghost trying to find some relief. I assumed I might have some elevated response to the flu shot – but couldn’t have predicted it would be like throwing gasoline on a fire. Wonder if the carb and sugar car rave home from Mayo had anything to do with anything – probably not, right? (Probably.)
I was finally able to sleep for about three hours after a night of absolute bullshit. And the deep realization that pain eliminates possibility. Just that afternoon, Bob and I were planning trips; all night long, I was resigned to never leaving the house again. I could not see a path through this. I completely lost any possibility for a recovery. Hope, gone.
All for amorphous pain that has no definite source. There’s no axe wound, no broken bone, no tumor consuming my organs. Maybe a tiny lesion that happens to ignite a nerve that then sets up a chain reaction. I can sometimes distract myself from it; when I realize the pain has momentarily disappeared, I frantically try to think of something new and not pain related, because if I recognize its absence, the pain comes roaring back. I get frustrated that I’m unable to find the mental switch to reliably turn it off. In the moment I have little will to keep trying to figure it out. Pain is all consuming.
Today, I worked (working is an engaging distraction), I fired off a couple fairly hysterical portal messages to my toxicity and palliative care teams, and Bob retrieved my morphine prescription. I had a planned energy healing session. Long story short, I’m back, baby! Was able to sleep for a couple hours, and I’m back in the land of hope and possibility. And morphine. I am nowhere near needing strong drugs on a regular basis -- only to put out periodic fires when a chain reaction of ridiculousness starts. But they're sure great when I need them. I'll also keep working with palliative care on things like my Gabapentin dose and other strategies to prevent the fires in the first place.