So Fast This Expedition, So Vast This Heavy Load
Blogging Tunes: Yes (artist) shuffle on Spotify
Not sure why I was in the mood for Yes, this morning, but this shuffle is the perfect match for my mood. So many Yes songs have uplifting energy. It's not necessarily the lyrics; it's more the (amazing) music and Jon Anderson's voice. So yeah, Yes energy matches how I'm feeling... I'm feeling pretty good and excited about where we are. Read on and you'll see why.
This post -- as I imagine most Monday posts might be going forward -- will be a long update. So if you don't have a lot of time now, come back later when you do. :)
Before we start going deep in counts, fevers, and travel baseball, I want to highlight something: one of the Vineti crew got me the greatest present. It's this pair of Bombas Slipper Grippers. Half slipper, half sock, these things are literally perfect for a hospital room. She even got a pair for Heather! Thanks, Birchie!
OK, so where are we on the health front? Today is Day 17. I'm going to start putting the Day # in the header at the top of posts to make it easier. That means we've been done with all chemo for 3 days. The vast majority of the chemo was done in 7 days, but unlike traditional 7+3 induction, my regimen -- FLAG-IDA plus venetoclax -- includes 14 days of venetoclax.
The FLAG-IDA plus venetoclax regimen is new and it's pretty intense. One thing that sucks is that venetoclax wasn't really designed for this use and therefore isn't available in IV form. For the first 7 days I had to take 4 big pills a day on top of everything else. That's not easy to do when you're constantly nauseous. The compozine only helped so much. So glad the first week+ is over.
Now we're done with all that and now it's just a waiting game. What are we waiting for? Well, ultimately, we need the ANC (absolute neutrophil count) to come up to (or start approaching) 1.0. It's intentionally < 0.1 now. That's what the chemo does... obliterates all the white blood cells (WBC) of which ANC is a subset.
Random: Nice! South Side of the Sky just came on. Always loved that tune. I remember in 1988 or 1989 seeing a band at a UMass house party and they played this song... I hadn't thought about that for a long time, but looking back -- I think they were called Hoobis Doobis... is that right, Matty? Jackson? -- they, and in particular the keyboard player, really inspired me to want to play more. Who knows, without my seeing this deep cut song covered live, maybe there would be no yeP! and no Chum. You just nevah evah know.
So here are my complete blood counts (CBC) as of today:
So all the stuff that's < 0.1 is what we're watching. These numbers mean I have no immune system. Sometime in the next 7-10 days (optimistic case), the WBC and ANC will start to rise. Once the ANC gets close to 1.0 -- an additional 3-5 days -- if everything looks good, I can go home. What's after that? That's a future blog post. :)
Of course, I still have to take a ton of pills, get red blood, platelets, IV drips for various anti-biotics, anti-fungals, a nupogen shot every day, and who knows what else -- annnnnnd of course the marinol -- but now we just hope things are uneventful.
I'm also doing laps around 11 Long every day (and other light exercising), trying to consume at least 1200-1500 calories -- I made that range up -- a day. It's not as easy as it sounds, but the marinol is helping tons. There's a spinning bike on the floor too. Not feeling up to it yet but maybe some real light riding later this week.
For the past few days it's been anything but... I've spiked 3 fevers over the last 4 days. You really don't want any fevers. Since, while most turn out to be innocuous, if the root cause is something bad, it can kill me as antibiotics and anti-fungals can only handle so much. Fortunately that finger problem -- did I spike a fever for that? -- seems to be about 90% fixed. Whew.
[switching to Peter Gabriel shuffle on Spotify]
So it's really gonna be a lot of me sitting in this chair for most of the daylight hours, mixed in with getting vitals taken, talking to docs, the aforementioned exercise and hopefully feeling relatively good. The room gets direct sunlight -- but only if you're sitting right against the window -- from about 8:00a to 4:00p this time of year. I may not have the view of the bridge, but I got sun and it's nice and warm!