7/6 still in here

Still in here.  Been having a bit of a rough time. Many episodes of Grade 1 CRS (cytokine release syndrome) with fevers almost nightly and sometimes during the day. Some of the early days, I slept so poorly because of the fevers and the dexamethasone, I couldn’t do much but lay in the bed and try to get some sleep the next day. My liver inflamed at 48 hours and that meant stopping the drug over night until things improved. They did, but according to protocol, a greater-than-4-hour-stop requires another steroid assisted start.  So another 20 mg dex and we continued forward. I transitioned to the higher dose of Blina on time, but almost instantly had more high fevers. At this point I was still hopeful that the fevers would leave and I would get out on the 3rd. That turned to 4th, and then the 5th. Then I accepted my fate and knew it was gonna be more like the 8th or 9th. The silver lining is the CRS reaction is the body’s response to killing leukemia cells. So it’s proof that something is happening

The other main component to this hospital stay is that I’m on droplet isolation because of rhinovirus. Unrelated to the cancer things, but pretty much having a cold is the story of my life this last year. Alpen in school is the vector and my young immune system hasn’t seen much stuff yet, so it struggles to fight off anything.. Droplet means I can’t leave the room. And visitors, nurses, and doctors gotta wear gowns when they’re in here. The no walking is really annoying, but got better when PT delivered bike pedals yesterday. A two week hospital stay is tough enough with having to catch up on all the life stuff you put on hold, but then when you add in trying to recover muscle mass, it gets challenging.

We had two wonderful visitors just leave today. Mike and Myra came up to say hi and help out. It did get a little crazy in this room when all four of us and Alpen were here. Alpen found a good time in shooting hoops into the commode chair though and that occupied him for a good while. Bree is celebrating the union of our friends Jenny and Brian tonight. Something I obviously would teleport to if I could.

Been able to watch a lot of soccer and Wimbledon. Looking forward to the WWC19 Final tomorrow morning.

The hospital stay is likely coming to an end here pretty soon. I think on Monday i should be set free. No promises in this game though. I’ll blog again when I’m out.