Home again. Back in bed again. This time feeling less dreadful and dread-filled.
Another wheelchair ride into the cancer center this morning. This time Quentin was there and asked me what was wrong. I didn’t go into clinical details, but then a second later I had to because we again ran into Dr. S, radiation oncologist, who was seeing me chaired in twice in the same week and needed to know what was up. My mom heard his last name and started speaking Italian.
Today I didn’t have any doctor visit. I was on a fast track to the infusion floor and the nurses met me there. When they come down to a different floor for you that’s when you know you’re extra specially screwed. Nurse Practitioner R met my mom. So did Research Nurse C. I was steroid-crazed and cranky – so what’s new? It was still so, so good to have Mom there, even if I made her adjust the temperature of my drinking water about twelve times.
I wasn’t too badly dehydrated today, and I had even managed to eat an egg and a piece of toast this morning (which didn’t feel so good ten mins later) so I was able to stand for more than a millisecond. What a concept, verticality.
Today, the main goal was to STOP the colitis provoked by the ipilimumab. They did this with a drug typically given to Crohn’s patients called infliximab or, more charmingly, Remicade. The only thing about Remicade is, once you have it – it’s curtains for ipilimumab. I know I’d swallowed the ipilimumab sales pitch and I really wanted to stay with the winning brand. But it’s killing me!
And the fact is, there is more than one way to skin this cat. Once my gut stops roiling and I am feeling better, they will do another scan, probably in late December. At that time, they will see the size of my tumors and assess if I am even in need of further treatment at all. The tumors don’t just disappear right away (at least not usually – though my experience has been so singular that I do hold out hope for that kind of miracle to legitimize my suffering), but they can tell if they’re shrinking. If I do need more treatment, it will be with a newer cousin to ipilimumab, called PD1, or Keytruda (still not loving the naming conventions here), which apparently doesn’t pack quite as much of a wallop as ipilimumab, side effects-wise. It’s perfect for ipilimumab flunkies, like me.
I got a wonderful foot massage today. I managed to get my mom to order and eat a pastrami sandwich without feeling guilty about eating near me (“I am on another plane of consciousness right now” I told her). And best of all, a good long chat with the nutritionist, who gave me sensible tips for becoming an eater again without great pain and setbacks. My gut is basically like a newborn’s right now. It will take time to nurse it back to a state of omnivorousness. Tiny meals, tiny bites. I’m going to be obsessed with food in new and terribly unexciting ways. I’m going to learn how to stop poisoning myself while I am healing.
All this sounds good, but tapering off the steroids – the current main goal for the team, me, my brain, and the entire universe – is the main thing I’ll be attempting this week. Wish me luck for a seamless return to not-crazy.