Alive At Both Ends

But a little dead in the middle

Tue Jun 25, 2024
AML 3.0 treatment - Day 99 (Cycle 3 Day 1)
Blogging Tunes: Genesis - A Trick of the Tail | PHI@DET

In the first cycle of treatment, I spent 5+ weeks here in LA. In Cycle 2 it was 8 days in LA, the rest at home. This time: one day in LA. Maybe my last day at UCLA ever... I mean, unless one of the boys comes here for school. :)

Today is Cycle 3 Day 1. I landed at LAX at around 1:00p and taxied directly to the UCLA Bowyer Medical Center. If all goes well, I'll be back at LAX 20 hours after I landed for my return flight to SFO. Then I'll swing home for a quick nap and then to Marin Cancer Care for Day 2 of Azacitidine. So, yeah... one day in LA this time for labs, appointment, and Aza, one night at the Luskin, and then home in the morning. Day 2 to 7 of hell week will continue in Marin. Starting with this cycle, I can do everything but Day 1 remotely. This would be true for subsequent cycles as well, but we're only doing 3 cycles in this “Phase 1” of treatment. More on that later.

Why not fly back tonight? Well, my Aza infusion won't end til around 5:30p, so I'd be probably be looking at an 8:00p flight at the earliest. That's a long day when you're getting chemo. Also, in the previous two cycles, I got pretty sick in the evening of Day 1 Aza. Dr. Chai Ho is prescribing a stronger anti-nausea this time, but do I really want to risk getting sick on a plane? I don't think so.

So what's happening now? I just picked up my oral chemo from the Pharmacy, got my blood drawn, and now I'm sitting at a little table outside the Medical Center waiting for my return appointment. Despite being on the MedGuest Wifi, I can't seem to get reliable internet, and my hotspot sucks, so I'm starting this post in a plain text doc on my lappie. Here's the scene so you can picture it.

In about 40 mins, I'll walk back to the clinic for my appointment with Amy. I'll get the oral med from the trial -- the Ziftomenib -- we'll talk about the details and results of my latest BmBx, do an EKG. and whatever else is on her (and Dr. Chai-Ho's) mind(s).

In between now and then, the results from my labs will become available in my MyChart. Of course I can't plot new graphs without internet so I'll do that later. I'm guessing not much has changed with my blood and platelets, but I'm expecting ANC to be way up. Hope so, because I've been eating all kinds of sushi, salads, raw veggies, etc. Couldn't do that for “munce” so I kinda binged last week. Need those neutrophils to do their thing in case there's any unwanted bacteria on the raw stuff.

Speaking of which, here's the ridiculous sushi special Floyd and I got at Bamboo Sushi in Portland on the eve of his baseball tournament last week.

I also enjoyed my first (and only) drink of the month. Maybe one day I'll feel energetic enough to imbibe more regularly again, but not today.

The Bamboo we went to -- there are 3 in Portland -- is in this cute little neighborhood a few blocks from my good buddy Joe. Was great to see you, G, and the girls, bro!

So this is it... the Last cycle: 1 week of hell followed by 3 weeks of more chemo (still harsh but not as bad as week 1) then 3 weeks of recovery. That'll be it for Phase 1.

Think of the Cycle 3 recovery weeks kind of like intermission or halftime. These three cycles are to prepare me for Phase 2: stem-cell marrow transplant #3 at UCSF. Admission date for that is August 12th. Transplant date is set for August 19. Then, if all goes well, there'll be a long, grueling recovery that will take the rest of year. What happens if it doesn't go well? Don't ask.

Ding. Right on time... labs are back. Let's see... wow! Hemoglobin up a bit to 10.5, Platelets hanging in there at 84, and... drum roll... ANC up over 2! 2.03 to be exact. I'll add these to my sheet later and include the new overlay graph at the bottom with an explanation.

OK. Trick of the Tail album just ended. Perfect timing as I need to head back to clinic for my appointment with Amy. Big question of the evening will be... do I chance it with Mr. Noodle or eat something lighter? And if lighter, what?

* * *

OK. Appointment done. Aza infusion done. I'm definitely feeling tired and a little spacey from the combo of the Ativan, the IV anti-nausea, and the Aza, but I *think* I feel good enough to try Mr. Noodle. Gonna walk down there now. I think I'll start with a small War Wonton Soup and see how I feel.

* * *

Definitely made the right call to stay over tonight. I'm exhausted. After my soup, I just got a little side salad and walked to the Luskin. Can't keep my eyes open.

* * *

Wed Jun 26, 2024
AML 3.0 treatment - Day 100 (Cycle 3 Day 2)
Blogging Tunes: Genesis - Abacab | PHI@DET (box score only on plane)

Continuing this entry on Wednesday... I'm at 32k feet en route to SFO from LAX. Crashed early and hard last night. We couldn't start the Ven and Zifto yesterday, so I started this morning. Same schedule. Zifto at 5:30a with water only, Ven with food 2 hours later.

After I took the oral meds, I spent a few minutes updating the Cycle overlay graphs. Then it was time to pack up and skedaddle. I'm still writing this offline. When I get home I'll add the charts.

Cut it pretty close with my flight. Uber took 12 mins to grab me even though the app said 6, and there was construction in Westwood. God Bless TSA Pre. Uber guy dropped me at the Departures curb about 40 minutes before departure time. Once I saw the short TSA Pre line I figured I was good, but my gate was super far away, the pit stop for green juice and croissant took longer than it should have, and my legs weren't happy with the (virtually non-existent amount of) stretching I did this morning, so my pace was kinda slow. Plus I was beaten down from the chemo. Was kinda cool to just walk on to the plane with no line, sit down, and everything started going. I might have been the final passenger to board.

Wow, that was quick. We're starting the descent into the Bay Area. Reminds me of a dumb joke I heard the other day: "What do you call a criminal landing a plane?" (Answer at the very bottom). Time to put my lappie away. Will author the final section of this entry after my afternoon appointment (and Aza infusion) at Marin Cancer Care.

* * *

Ugh. Second day of Aza crushing me. I'm just so drained. What a complete 180 from just a few days ago. I guess that means the chemo is working. Uy vey. I need to rest. Time to paste this into Substack, add the pics and press publish.

Here are the Hemoglobin, Platelet, and ANC charts.

The big takeaway here is that all my counts were higher at the beginning of Cycle 2 vs Cycle 1. And, awesomely, the counts are even higher at the beginning of Cycle 3. See the little orange line on the pics. Hopefully that means I won’t need any transfusions at all this time around. As long as the orange line doesn’t approach those blue line nadirs, we’ll be fine. Time will tell.

A few more pics and vids before I publish this. Floyd’s travel team got to play on this awesome minor league field in Hillsboro, OR. Home of the Hillsboro Hops. Was really cool to see the team play in a real stadium. Here’s a vid of the field.

Here’s a pic of the boys chillin’ between games.

I didn’t take much video of the games since it’s all on GameChanger, but I just happened to capture Floyd getting plunked.

Lest you think that loud sound is the ball hitting his bat, it’s not. It’s hitting his shoulder bone. Yeesh. Here’s a scrub.

OK. That’s all I got. Gotta just try to survive this hell week. Heather’s finally out of the COVID woods, so hopefully I’ll just be able to hide myself away and rest (when I’m not going to daily Aza infusions).

Oh yeah, the joke punchline: "Condescending"

iwkiaaaa