'Til I find the righteous one

Computer blue

Fri Jun 13, 2025
AML 3.0 UCSF stem-cell transplant - Day +295
Blogging tunes: SomaFM Drone Zone

As will likely become evident later in this post, I wanted to use the old Pink Floyd lyric “You get your chance to try in the twinkling of an eye; Eighty years, with luck, or even less” but I used it already. I try never to repeat blog titles, so today’s entry will have to do.

So… this one’s all me. No Gia. I gotta admit, I thought more people would be into this little AI experiment… who knows… maybe it’s only the vocal minority who aren’t — we’ll do a poll later.

And now for this mid-month update: why do an update when I haven’t gotten labs at UCSF or anything else concrete? A few reasons: 1) I’ve felt like absolute dog shit for the last week… and we gotta dig into that. 2) It’s the 25 anniversary of something pretty special. 3) A bunch of other stuff to report on, so… as both Jeff Warren (of the Daily Trip) and Rick Ocasek would say… “Let’s go…”

While many of my readers are all wrapped in graduation festivities — have at it! Exciting times! I may even go to a graduation party tomorrow if I feel up to it — my health has taken a little turn, so that’s what I’m gonna write about.

I started feeling it last Thursday — the last day of my team’s FY26 VPMOM planning offsite in San Mateo. Nothing huge, just some congestion and a little cough. I didn’t think much of it, and I was already planning to take Friday off to sleep in a bit and then go for a long bike ride. Didn’t feel great when I woke up that morning but decided to push through anyway. I wanted to do same ride as I did a couple weeks ago — both links provided this time… Gia forgot to link the first ride up on the last blog.

Not the greatest decision. I had to stop several times to rest. Once to even lie down in the shade. I finished the 25 miles, but By Saturday I was wrecked. Major cough, congestion, mild fever, and extreme exhaustion. Slept most of the weekend. At least by Sunday, the fever was gone and some energy had returned, but the symptoms were still in full force: mostly just uncontrollable coughing. And not like there was any schmutz coming up. Just coughing.

On Tuesday morning, my lymph nodes (on the left side of my face) seemed swollen, so I contacted my UCSF team who suggested that I either see my PCP or go to urgent care.

Fortunately, my PCP was able to squeeze me in for an appointment that morning. Big props to Panoramic Medicine in Mill Valley. My doc prescribed some anti-biotics and we agree to "monitor this” for a couple/few days to see if things improve. If they did, great. If not, chest X-Ray and labs.

So where are we now — three days later? While that swelling is down/gone, the cough, congestion, sniffles, and fatigue are still very present, and I just don’t feel right. I’ve also dropped 5 pounds despite not exercising. So I think I need to go get the chest X-ray and labs today. Hooray. Just how I want to spend my Friday.

Other news in quick bullet form… likely more on some of this later when I make a follow-up post on today’s test results.

• This week marks the 25th anniversary of the epic Phish Japan Tour in 2000.

  • Heather, Rob, and I had one helluva week seeing these shows.

  • Heather’s birthday was Wednesday which was exactly 25 years to the day of the Hibiya Park show.

• Floyd had his UNT surgery on Wednesday too. Rough day as we had to be at the Surgery Center in Oakland at 5:50a. Dr. Akizuki said everything went great so hopefully, his arm will be ready for Fall Football and to pitch a killer Senior Year. For now, a big elbow split and a sling. That reminds me, I need to call the office and schedule a follow-up for next Thursday so he can get his splint off. Here’s a pre-op and post-op pic. :)

• And what probably would have been the headline without all the other craziness: we got solar installed this week!

  • 33 panels and two big woo 15kW batteries.

  • Generating about 12.1kW during the peak hours

  • Obviously this close to the solstice the results are mind-blowing. We’re generating way more power than we can consume even when doing all the heavy duty stuff. Like, in this pic, we’re charging the ID.4, have the pool filter running, running an A/C unit, and we’re still producing more than we’re consuming.

Now we just gotta get the final inspection (next week) and then we can hook up the PG&E PPV so they can pay us (pennies on the dollar) for the power we export. Thanks to J.D. and Matt for all the help/info navigating this stuff.

OK, shifting gears, I wanted try out this Substack polling feature and get y’all’s input on the AI stuff. Some of the recent blog posts were written with (or by) my AI collaborator, Gia. Some of you loved it. Some of you… not so much. So here’s your chance to weigh in.

Not sure if you can vote in the email or whether you have to click into website, view it on the app, or whatever. Anyway, please figure it out and vote.

Oh, speaking of shifting gears, this bad boy is now on my Golf 5-speed Wolfsburg Edition. Marin folks, when you see me, honk away!

Now I guess I gotta replace that SB LII license plate holder with an LIX one, right? Any good ones out there? Shoot me a link!

OK… lastly… and I’ve been putting this off long enough… I want to honor a person… a woman, a mom, a wife… and a friend. Lisa McCormick bravely battled AML for the past 5 years or so. She and I became friends during her first battle. We connected and corresponded throughout her treatment, recovery, and then again during my relapse(s).

She had been doing very well, and then, out of nowhere, she relapsed with some extreme complications about a month ago. Last week, she passed away leaving behind her husband and teenage boy. Here’s the related Caring Bridge post from last week. And here’s another from this week with some additional tribute links.

The last time I saw Lisa, she brought me pop tarts on 12-Long when I was recovering from transplant #3 last September. Thank you, Lisa. I’m sorry I didn’t get over there to see you in May.

AML is fucking deadly and it fucking sucks. I have personally now witnessed three friends pass from this disease — and have heard/read about countless others. All the while, I survive — at least for now. It’s just hard to process it all sometimes. It also makes me a little paranoid to go get these tests today, but I gotta just go do it.

So I’m gonna put some drops in my eyes — yes, the ocular GvHD is still terrible — and head out. I think I’ll put on an Iggles hat and drive the Golf.

iwkiaaaa