Disc cultivators at this fatalistic gala

Sun Mar 10, 2024
Blogging tunes: Phish Radio (SiriusXM)

Big update today covering a few topics:

• Student Visionaries Gala
• UCLA visit update, trial confirmation, visit ideas, and time off from work
• The JazzFest goal
• Ivy Room Chum gig  reminder: it's this Friday [details | tickets]

My blog post titles are almost always (and often Phish) lyrics, and while it wasn't explicitly fatalistic, the LLS Student Visionaries of the year Golden Gate chapter gala was last night at Fort Mason in San Francisco.

As expected, Floyd's team -- Ty and Henry's "Cancer's Collapse" -- won by a landslide. Floyd was the top overall individual fundraiser and won "Team Member of the Year." Many of you reading this made that happen. Thank you. 

He raised so much that they didn't even put the total on his slide as it was more than what each of the other teams raised. This award was so early in the program that every team would know that they had no chance of winning as the winner wasn't announced until the end. Way to go, Floyd! 

Oh, and advance notice... 2 years from now, Orion will probably be doing this.

I hope all you generous donors will contribute again. We won't stop until there's a cure!

Here are a few more pictures from last night:

As you can see above, the Golden Gate Chapter raised almost $500k. There are around 80 Chapters nationwide and some will raise 2+ million. All in, this amazing program will raise upwards of $75mil this year for research, advocacy, and patient services. Truly amazing. Thank you LLS for all you do.

OK, on to UCLA. Last Wednesday was quite the whirlwind. 9:00a flight from SFO and didn't get back til after 11:00p. In addition to getting a bunch of tests/screens (including another BMBx) I met most of the UCLA team including my primary UCLA doc, Dr. Wanxing Chai-Ho and the "Lloyd Damon of the South," Dr. Gary Schiller. Dr. Chai-Ho is amazing. We went through the specifics of the clinical trial and all the Q&A I'd prepared.

Here's what they extracted from my bones (with PII whited-out.)

Now for one of my tests, I had to go to floor "B1". Yes, I took the elevator, and no, I didn't find the "Records Room" nor did I run into Dr. Rosenpenis.

Since my return flight wasn't until after 8:00p, I had some time to explore the immediate area, including the mega-supermarket Ralph's and the Tiverton House which is likely where I'll be staying for the duration of the trial.

That's right... unless something goes sideways, this trial is entirely outpatient. While I'll have to go into the clinic every day -- so I need to be close by; hence the need for the aforementioned lodging -- the hope is that I'll never need to be admitted.

After a quick nap at the Tiverton House -- no one really noticed me slip in so I just found a couch and passed out -- and little tour of the place, I headed back to LAX.  I had an hour to kill as it was and my flight was delayed for close to an hour so I got in a little practice time.

OK, so now what? The current plan is for me to drive -- yes, drive -- to UCLA on Monday March 18th and start treatment the following day. My optimistic plan is to be there for exactly 5 weeks and 5 days (more on that later) and return home on Sunday April 28th.

So... out-patient? During intensive chemo? Yeah, it's a big question mark. I really have no idea how I'm going to feel during the treatment, let alone how bad the side effects will be. So simply getting to and from the hospital, making sure I have enough food on-hand -- there are fridges in the rooms and a common area to cook or microwave but it's still real work to buy food, bring it back, etc -- and getting daily exercise might be my full-time M.O. I mean, I hope that I'm feeling good enough to walk a lot. And walking the UCLA campus has got to be better than doing laps in 11 Long, right? :) But I really have no clue.

Still, I'm optimistic... and driving down means I'll be able to bring stuff like a little keyboard rig, my 34" monitor, a fat bluetooth speaker, and my weighted blanked. Not quite all the comforts of home, but some. 

Oh, in order to complete the paperwork for the trial, there's one more test I need: an echocardiogram. Unfortunately, despite my doctor's request for an "urgent" referral, the soonest I could get one -- at any UCSF location -- is this coming Wednesday... in San Mateo of all places. The irony? The San Mateo location is literally across the street from my office. Since the relapse I've been working exclusively remotely, so maybe I'll visit some co-workers before my appointment and before my impending time off.

Officially, I'm going to take next week and the entire (almost) 6 weeks of the trial off. That doesn't mean I'm gonna totally disconnect... I never seem to be able to do that. Right, Benji? Right, Phil? My hope is to still be able to meet 1:1 with my directs and attend my team's weekly meeting. Even if it's just an hour a day... staying connected is so important.

Now what about visitors? Well, you LA types (e.g. Markus, Lila, Hess) we've already started talkin'. Let's figure something out. But what about fam? Yeah, that'll be tough with the kids' school, so we're targeting part of Spring Break for Floyd and Heather to visit. I'm hoping to not only get some time with them, but also for Floyd to be able to scope out some LA-based baseball-minded college campuses. It's time to get that shiz started. Maybe even do some official campus tours. Gotta look into that. O will be on a D.C. trip. Gonna miss you, kiddo. Diana, thanks for holding the fort!

Above I wrote "Five weeks and five days" is my goal for being at UCLA. That would essentially be the first 28-day treatment cycle plus the first 10-11 days of the second cycle. Not gonna go into the details of how many cycles we might need and how it all works... the thing to know is that if things go well in the first cycle, I only need to be at UCLA for the first bit of subsequent cycles.

That brings us to the JazzFest goal. I always like to have a date circled on the calendar. Could be the next Chum gig, a Philly sports event, a family trip, a local party, a date night with Heather... really just about anything. Well, before my relapse, one of my best buds (Dougie Doodles) and I made plans to meet for the second weekend of JazzFest. We've been trying to get together for some kind of music thing since COVID, so we locked our sights on JazzFest 2024 and we picked the second weekend because the Stones are playing. Good thing, since, based on my schedule, the first weekend has zero chance. Remarkably, second weekend is still possible though.

I have a ticket to fly from SFO to MSY on Wednesday May 1st. So if I get the green light to drive back to SF on Sunday April 28th, I'll have two days at home before hitting NOLA. It really is a longshot, but my whole fucking life (well since November 2010) has been a longshot, so why not? Who goes to JazzFest after coming off a clinical trial with a menin inhibitor and two forms of chemo? Me! That's who!

OK, this got long, and I need to practice a little music before likely needing to sit and rest, so last thing for this post real quick. I know lots of people complain about Daylight Savings Time. I'll never understand that. Sure you lose an hour of sleep and it's dark in the morning for the next couple weeks but other than that it's just so great. The biggest plus? (Well besides kids' baseball games into the evening?) A Sunday sunrise walk on "spring forward" day.

Under normal circumstances, I'd do some trail with elevation to try to get to the top before sunrise. Not today. So just a slow, mostly flat, simple, 3-mile walk/hike close-to-home so I could catch a little of the late morning light. Here's a pic.

Looking forward to seeing many of you this Friday night at the Ivy Room for Chum [details | tickets].

iwkiaaaa