July 22, 2023
The Good news is that I get to go home from the hospital today. It’s been 29 days, and I’m ready to go. I’ll miss the ability to order meals on my phone and have them magically show up within 45 minutes, but I won’t really miss the stiff bed, limited menu or the multiple wake ups in the middle of the night, and various other unmentioned things.
You might be thinking, but Kathleen, you said you would be in the hospital for a long time with this next chemo, right? Yeah, that’s the bad news. I started the HiDAC chemo about 11 days ago now, and my blood counts are going up, when they should be going down; I’m not responding to the HiDAC as they would want. The chemo should wipe out all my blood counts – including the leukemia - so that everything drops to near zero, and then we build them back up with the good cells. However, we haven’t seen the expected drop. Again, that’s not good news because it appears that I am not wiping out the bad leukemia cells.
I’ll meet with the doctor on Monday on the next plan for chemo. There are options, but we are in some kind of trial world at that point. There is no established plan of treatment if you don’t respond to the courses I’ve had.
I’m fine physically, but still have greatly reduced immunity. I’ve kept somewhat busy, with my laps around the unit and some light work here in the hospital. The Tour de France has been keeping me entertained, and I lack for no streaming service, movie or tv show. The last time I counted (when I thought the next blog entry would be lighthearted) was 6 books. I’m up to at least 8 now. Thanks for the Dolly Parton book, Bossypants, Lessons in Chemistry, and the National Parks coloring book; I’ve tackled you all. Next up, my semi-closeted love for Clive Cussler books. I might have ordered three; Amazon makes things so easy!
My main struggle now has just been reconciling how I feel outwardly (fine!) to what they tell me is going on inside that I can’t see (really bad!). I trust the biopsy results and the blood tests that the leukemia resides just underneath and we need to crush it prior to the bone marrow transplant, but I feel so good, it feels like the transplant should be right there. Why not now! I should move to phase 2 of this process, but I’m stuck here waiting for this next, next chemo to work. (I understand we need the leukemia to be in remission prior to the transplant so that relapse chances are minimized.) Some days are harder than others to be hopeful that I get to that phase 2, but that’s the only way forward.
Kathleen, I have a large collection of Clivr Cussler… you may have them …no shame :)
do you recommend reading "Lessons in Chemistry" or waiting for the TV show?