Time Is On My Side

Tue May 7, 2024
AML 3.0 treatment - Day 50

As I start this post, I’m flying from SFO to LAX to begin Cycle 2 of treatment. I don’t think I’ve ever been to SFO twice inside of 48 hours. Absolute whirlwind of a week since I last posted. Not even going to try to describe all of what I experienced in NOLA — this is a blog not a book. :)

So we’ll do a bit of the health-related/energy stuff, a few musical highlights from NOLA, a couple links, some shout-outs, and some extreme gratitude. If any of my music-head friends wanna go deep on the JazzFest music, text me and we can try to make it happen. Who played? Check out the second weekend cubes (scroll to page 5) and the second weekend grids.

Oh, and let’s not even talk about basketball. Baseball? Sure!

OK, so as you may remember from my last post, the combination of being off chemo and my counts stabilizing made this trip possible. JazzFest Weekend 1 would not have worked, but we had tix for Weekend 2, so all good. Dougie and I chose Weekend 2 because of the Stones and it totally worked out schedule/treatment-wise.

Let’s start there for a moment.  Here’s me and Dougie hangin' with the Bojon crew (krewe?) — more on them later — during the Stones set on Thursday night. 

In short, Mick and the gang were awesome.  Here’s a cool review with great pic and links to some YouTube vids of songs.

One thing about JazzFest is that you never know who’s going to show up or what’s going to happen. Read the part of that article about Irma Thomas and check out the Time Is On My Side video. Truly amazing moment.

One more pic (from this Facebook post) of Dougie and me picking up our bikes after the Stones. Taste the rainbow!

Back to health… we all hoped the counts would continue to increase last week (which would, in turn, drive my energy up). Well, yesterday’s blood draw revealed that 2 of the 3 counts I charted in the aforementioned post did increase (Platelets and ANC (absolute neutrophil count)) — so that’s good — but Hemoglobin fell a little bit. That drop (plus lack of sleep) probably explains why I started feeling a little weaker toward the end of the week.

Still, Dougie and I were able to do 100% of what we planned including 3 days of Fairgrounds — arriving early enough to see all the bands we wanted to see each day, unlike some of the folks in our group… you know who you are 😀 — a 9:00p show, an all-night-into-the-morning two stage rager, and a 2:00a (Sunday morning) show. 9:00p Friday show was JRAD at the new NOLA Fillmore. What a show and what a venue! Got to see and hang with (the other) Doug and Jessica Simon there. A few pics on this Facebook post. Gotta include one here because it's just stunning. No chance I was doing floor. Gotta have seats when you're old and battling AML! We were 4 rows up from the board. Perfect.

None of this was easy. At the end of each night I could barely walk. Each morning, I had to stretch legs for 10-15 mins just to be able to walk around the corner for coffee. These steps alone would be a good work out, but add in the dancing, the biking, and the heat... whoo doggie!

For Fairgrounds, I was dressed head-to-toe in SPF sun gear and was slamming water, but was able to indulge in a few non-water beverages (and these gummy things) a bit in the evenings. 

So yeah, I was able to fully experience this epic weekend and it wouldn’t have been possible without the help of a ton of people. So let me try to do a “gratitude roll call” of sorts here. 

1) Elise Curry of LLS. When this AML 3.0 bullshit first happened, I originally didn’t want to travel for treatment. But the more I looked into it, the more it seemed that a clinical trial was my only chance for survival. Elise, who works in the Clinical Trail Nurse Navigator group at LLS prepared an amazing list of trials including the one I’m in now. Not sure where I’d be without her. So how fucking cool is it that she came to JazzFest and we got to meet face-to-face?

2) My UCLA team: Dr. Wanxing Chai-Ho, Amy Jacobson, Bruck H, Carla, and the countless others who support them. When I first started the treatment, I told them that we needed to figure out how to make this JazzFest weekend happen. They thought I was crazy; they were probably right! But as Dr. Damon and Lisa McNey (of UCSF) know, this is how I roll. I beat the odds, find a way to survive, and do the life things that I want to do. So we mapped out the calendar, and worked the treatment cycles in a way that gave me a chance. The rest is history.

3) My family: Heather, the kids, and Gramma

Less than two weeks home between Cycle 1 and Cycle 2 and my awesome fam was supportive of my being gone for 5 days for JazzFest. Kids have been rockin’ their school and chores, Heather is holding down the fort, and Gramma is helping out a ton. She even made corned beef and cabbage for the one night I was home between JazzFest and LA. Thanks, Gramma!

4) The amazing San Rafael Community: friends, baseball dads, coaches

Big thanks to everyone who has given rides to Floyd and Orion — lifesavers! Huge kudos to SRHS and Juniors coaches (Aaron and Josh) and to Tory and Gavin for running SRHS GC.

5) Team Guidewire. Huge thanks to Mike, Diego, Gal, Glenda, and Team PROCOR for the flexibility of fading into and out of work as I’m able.

6) The Bojon crew (krewe?) at JazzFest. What a wonderful, magical experience to be fully welcomed by this amazing group of people, some of whom have been doing JazzFest for 25+ years. Thanks especially to Andrew, Caroline, Scott, and Patricia for allowing me to join the Marin contingent of Bojon and for inviting Dougie and me to the Thursday dinner. Thanks to Tommy (T. Haan) (co-)founder(?) of Bojon, who was on my flight, did the majority of the heavy lifting for the Fairgrounds, and was equally as welcoming. Thanks to Snake and Sharon for allowing me to tag along for Sunday brunch. Thanks to Igor, Maté, the Major and a bunch of people I’m forgetting for… well… just being awesome people. And wow… Casey Leach! A WebLogic blast from the past.

Here's a pic of me and T. Haan from the Fairgrounds and the Thursday group dinner at Fritai.

* * * that’s it for today — will continue on Wednesday * * *

Wed May 8, 2024 — happy 5/8 day, everyone!
AML 3.0 treatment - Day 51

Wow, we’re right back into it. And unlike Cycle 1, everything started today. Aza (in the form of shots, not an infusion, thankfully), Venetoclax (full on 70mg, no ramp-up), and the Zifto (the trial drug) -- just got all three in the last couple hours. Can’t tell if I’m feeling a little woozy because of the drugs or if it’s all in my head.

The good news is that my counts are all up (on their own!) compared to last week (pre-Fest) and even compared to two days ago, so the downtime between cycles was definitely the right call. And hopefully, I won’t feel quite as shitty on this round of chemo since my counts are starting reasonably high. We’ll see. Here are the charts including today’s labs. Only the most recent transfusion (from 3 weeks ago) is highlighted.

So the plan is: 7 more days here in UCLA (for the Aza shots), then back home for the final 3 weeks of this 4 week cycle since the Ven and Zifto are oral. I’ll keep y’all posted.

* * * time passes * * * 

Hate to end on a sour note (literally and figuratively) but it wasn't all in my head. Day 1 of chemo crushed me.  Puked a few times this afternoon and just feel overall blah. Same thing happened on Day 1 last time (from just the Aza) so hopefully this won’t be an every day thing. I think I just need to wait several hours after Aza to eat. Couldn’t really do that today because of the Zifto and Ven schedule but should be able to tomorrow.

OK, we can’t end on that. So here’s one more… I just found out that Dr. Chai-Ho is clearing me to book a trip to Portland for Floyd’s travel ball tourney in June. This will either be just before Cycle 3 begins or we’ll do a shorter pause between C2 and C3 so that I can be done with the C3 Aza before the trip. Scheduling real life around treatment is not easy, but you gotta try. If I hadn’t pushed, there’s no way JazzFest would have happened. 

iwkiaaaa