Ether Tuesday

Tue Apr 2 2024 - 11:00am
AML 3.0 treatment - Day 15

When you hit rock bottom, there's nowhere to go but up, right? I'm going to declare that Friday was rock bottom in terms of my mood and today is rock bottom in terms of my counts. Of course time will tell on the latter, but it can be as early as "mid week 3" when you start coming out of the nadir. "Mid week 3" is in a couple days, so there's a chance that my transfusions later today will bridge the gap.

So today... I just had labs and a great appointment with Amy -- the Lisa of the South -- where we went over everything from my current counts, to the plan for the rest of the week, to the plan for next week (when Heather and Floyd come to visit), to the transition plan to get me back to the Bay Area, and beyond. We also talked about expected energy levels which will help inform exercise regimen and even re-engaging with work.

Assuming things go well, I could be out of here several days before we originally thought, which could give me a full week at home before potentially going to NOLA. Yes, JazzFest is still a real possibility.

Looking ahead to future cycles, it seems possible that I'll only need to come down to UCLA for 1 day every 4 weeks and then just do everything else in SF/Marin. How many cycles will we need? That's a huge unknown and is one of the most important questions for Dr. Chai Ho when we meet next week. It might be as few as 2 but it could also be as many as 5 or 6. No way to tell until we do the next BmBx.

Before I go any further, let me just say that it is just unbelievably gorgeous here. Spring Break is over and the campus is hopping. I'm sitting on this little hill with my back against a tree just taking it all in. I'm feeling much less alien than I did last week. Maybe that's a sign that my counts are starting to come back.

[2:00pm update: nope counts are super-low... I guess transfusions today are the right call after all.]

Here's the current sitch.

It's been a long time since I've just hung out on a college campus. UMass was nice in the Spring, but this place is on another level. I guess a thing here is to BYOH (bring your own hammock) and set it up between two trees.

There are now a total of 5 hammocks in my immediate view. Since I've been writing, this woman set one up in the two trees right in front of me. Took her a good 10 minutes, but now she's just chillin' enjoying her burrito and rocking back and forth. No, I'm not going to take a pic.

Woah, a little 6-wheeled tiny robot just rolled by on the path right in front of me. Kinda reminds me of the robots that used to bring blood to patients' rooms on 11-Long. I wonder what it's doing.

Anyway... I hope everyone had a nice Easter. My Easter (Ether?) Sunday was amazing. I didn't have to go to clinic at all. Instead, I got to have brunch, take a walk, and just generally catch up with my favorite niece, the original LAG-dog herself, Lauren Amanda Greene!

I'd heard something from my brother about her moving to LA, but had no idea that she lived within scooting distance of UCLA. Stupidly, we didn't take a single selfie. Duh. Next time.

We got to FaceTime with Heather and the boys (who were at the Friesens for Easter brunch with our San Rafael crew). Even though we are 350 miles apart, we all got to have a great "family" experience.

Back to the present... it was getting a little chilly and uncomfortable sitting on the ground, so I walked back to the Luskin to get a little snack and write some more. Here's the Strava of my (not quite) 1-mile walk today.

It was still pretty tiring, but I think I saved some energy by taking yesterday off completely. Yup, I didn't do shit yesterday. Just total recovery day. Less than 1000 steps! Far cry from those two 10k days last week and even the two 5k days.

The only other thing I wanted to mention is that I got our accommodations squared away for Floyd and Heather's visit next week. Not gonna go into the details, but I personally visited 3 places -- which was exhausting -- but it paid off. The three of us are going to stay at a great place that's got everything we'll need and is within reasonable walking distance to clinic. Moving out of the Luskin and then moving back in is gonna be a royal pain in the ass, but I'll deal.

[3:30p update] I'm on the 6th floor of the Bowyer oncology building and my platelets just started. Once that's done, I need two bags of blood because my hemoglobin is so low. I'm gonna be here til around 7:00p. I wonder if I'll have a walk to Mr. Noodle in me then.

More in a few days.

iwkiaaaa