You get your chance to try in the twinkling of an eye

Eighty years, with luck, or even less

Tue Sep 10, 2024
AML 3.0 UCSF stem-cell transplant - Day +19
Blogging tunes: Grateful Dead - Copps Coliseum 3/21/90 and 3/22/90

I can’t believe it’s been more than two weeks since my last post. I’m really sorry about that. I truly thought I’d be able keep small posts going, but I haven’t been able to do much of anything until yesterday. My counts just starting coming up 4 days ago (on Day +15) but even two days ago I felt absolutely awful. In fact I made a little selfie video for family and close friends. I’ll share it with y’all substack peeps here.

A few days prior, my good pal — fellow AML survivor, Phish fan and sports nut — Pete posted an update on Facebook. If you haven’t seen it, it’s worth a quick read.

So what have these two weeks of hell been like? The fevers, the chills, the infections, the pain, urinary issues (requiring a PrimaFit at night), mouth sores, zero appetite, finding the balance been opioid-based pain meds and depression, not being able to even get out of bed… yeah, fuggedabouddit. Not writing that shit up here. Don’t want to think about it. But, if some of you, say those on the UCSF ride docket, want the gory details on the rides to and from clinic, we can talk about whatever you want. That docket will be getting going soon. Stay tuned.

For now, let’s talk about last week, this week, and when I’m getting out of here. As Pete posted, last week was the “bottom” and “waiting game” and it’s by far the worst week of the 4.

This week is all about count recovery and preparing for discharge. Here’s where we are count-wise.

This is the full width chart showing everything since admit (Day -7)

Anytime platelets got below 10, I get a transfusion. That’s 6 since they first dipped below 10 on Aug 31. Hemoglobin has held more steady. HGB transfusion threshold is 7, so I’ve only needed 2 on Sep 5 and Sep 7.

Much more importantly, if my white counts (WBC and ANC) continue to double (like they have been), it’s possible that I’ll be able to go home Friday. I think they were originally thinking Thursday, but based on some complications (e.g. bacteria in the blood), it may take an extra day to get everything buttoned-up. Will def need some Blood and Platelets before I go too.

Here are two zoomed in pics the numbers and the chart) with the WBC/ANC focus.

Today is really the first day I feel like I actually might be coming out of it which is just amazing. When you have two solid weeks where simply getting a(n assisted) shower and getting back into bed feels like a 25-30 mile ride, even the simplest things seem daunting.

Yesterday I did 2 laps with OT. It. was. so. hard. Today I did 4. Still pretty tough, but I just gotta do it. I got off just about all of the pain-killers too so my brain is coming out of a fog. Just gotta stay positive and get over this big hump so I can go home.

That’s it for now. iwkiaaaa