Tomorrow is a busy day with pretty much full re-staging of my myeloma. Various blood tests have suggested that tumor response is far ahead of schedule, so I’m feeling more optimistic than I have in years. Platelet and neutrophil counts remain problematic, so I’m still on some restrictions, but I feel better than I ever have at this level of anemia and look forward to further improvement.
Nancy’s looking forward to relief from the 24/7 responsibilities starting in just a few days.
Home yesterday!
Saturday ultimately went so well that they had no problem releasing me on a Sunday. The last 24 hours has been a series of little reminders of how good it is to have my own soap, my own shower, my own bed, a decent diet (chicken-fried steak/country gravy on bread!), no attached wires, etc. – and of course my own family right there without them having to drive 30 minutes each way.
We return to the Mayo MWF for lab tests and confirmation that Nancy’s checking for fever and any abnormal (compared to my usual) behaviors or thought patterns at least twice/day. Today’s labs were quite remarkable. Despite all the bloodletting my Hgb is slightly recovered, renal function is better than we’ve seen in years (so much improved I suspect lab error), and the chemical evidence is plain that there’s a war being waged (and won) somewhere in my body even if I can’t feel it happening. Which is pretty much our ideal result though the progress is ahead of schedule. We won’t do an actual formal restaging evaluation of the myeloma until the end of the month. The whole team is elated.
Wednesday was Day 10 and my discharge orders were written, but early that morning I began spiking fevers accompanied by a variety of signs and symptoms I’d rather not recall in enough detail to list them here. Suffice to day it was a horrible day. Thursday not quite as bad. Friday just low-grade fevers but blood tests suggesting the general inflammatory process was still expanding. It’s clear I’m here for the weekend.
This morning is more positive, though. No fever. Getting some blood which always improves things. I’m even contemplating eating something. Cautiously optimistic about Monday, which was actually the originally-projected discharge day.
Boring is good. There may not be many more posts because we’re told that CRS seems to be less of an issue with myeloma patients, appearing an average of 9 days in. I probably won’t have much to report. Which is good.
We’re calling the day of CAR-T infusion Day 1. It was busy. After much paperwork and baseline evaluation they finally brought in the big liquid nitrogen Dewar and pulled out my New Jersey ninjas. Warm water bath for them, then a very rapid infusion before a surprisingly large audience at 13:00. There was a massive and fairly unpleasant DMSO rush but within minutes all was fine.
With neuro exams every four hours things will not be particularly restful the next ten days. On the other hand the hospital food is somewhat improved from last visit. Somewhat. The mantra is “Boring Is Good.”