Oct 1st: Day 10 to Day 14 2nd weekend in the hospital

Things picked up on Friday, Day 10. After being distracted in the morning by dropping off Alpen at his new daycare for his first half-day, I headed to the SCCA for routine labs. I started the morning with lengthy labs and a lengthy dressing change, that was making me antsy that we hadn’t done vitals yet. When we finally got there, the nurse and the PA now in the room, they weren’t normal. My temperature was 38.2 C one tick below the “true fever number.” We tried another thermometer from a mobile unit: 38.3. That’s all we needed to see. The PA turned my way, “how do you feel about spending your Friday afternoon in the hospital.”


Mixed emotions. Obviously going to the hospital on a sunny Friday in Fall is nobody’s idea of a fun time. But I was all the sudden energized, relieved that this was the best proof so far the t-cells were doing something. I wasn’t feeling feverish, I felt the same I had the day before. I sent out some texts to the family and they saw the awkwardness in the news too: “is this good news now?” It was good news to me, but it was also still a fever, and some times these fevers can turn into severe CRS, which we want to avoid. It’s like asking for a little rain, but knowing what you’re asking for could bring floods.  There was an empty feeling when I got to the hospital though: the goal had been reached, so now what? I felt I was back into the unknown a scary path that no one knows where it will end or long it will go on for. My last feverish experience in the hospital was uncomfortable, but not terrible. How will this one be? It’s turned out this one has been the same thus far. They always ask how I’m doing, and I say “fine,” cause besides feeling tired and maybe a little chilly or warm I did feel fine. I certainly didn’t feel like I the temperatures they were gathering during vital check and blood products--temperatures in the 39’s and 40’s (103s and 104s).  I peaked at 40.4, a shocking-to-me 104.7. I didn’t feel awesome, but I felt better than what I thought someone with that temperature would feel like. I the ability to not recognize fevers is wrapped up in my neutropenia--with an ANC at 300, I just don’t have that many white cells to be circulating around getting whipped up.

The protocol the doctors have come up with for CRS is at the end of 72 hours of fever they do an assessment: is the fever gone? Are blood pressures stable? Any other symptoms? If any of these are a no, they move to a few doses of dexamethasone to tamper things down. But the catch of course, is that they don’t want to interfere if they don’t have to, since steroids might affect the efficacy of the treatment. At hour 64 (4 am last night) I was still feverish, feeling like crap, barely slept thus far, just had a major shart, stumbling into the bathroom and thought to myself: I’m ready to be done with this. I’ll take the dex if they offer it today. But 10 hours later when the team came by, my fever had gone away and I was generally feeling better and was able to keep down a half portion of oatmeal. So the attending decided to keep the course and not intervene. In her experience, my inflammatory markers should level off in a couple days and after that things so start moving back to normal.