These Are Days

Tue Mar 19 and Wed Mar 20, 2024
AML 3.0 treatment - Days 1 and 2

TL;DR: Lots of folks texting wondering how I’m feeling, how it’s going, etc. It’s Day 2 and it’s already crazy. First would-be 5-6 hour day turned into 10 hours yesterday. Started two chemo drugs and my body is like  “WTF are you doing to me?” I’m 100% on my own, walking from place to place — 5300 steps Tuesday — and even though I’m completely exhausted, so far, so good. Just a lot less energy than I thought.

How's this for a cool shot!?

Read on for more...

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Tue Mar 19 - Day 1 - 11:40a

I might as well start documenting some of what’s going on in the hopes that it will somehow turn into a blog post. In all likelihood this will just be a mishmash and stream of consciousness, as opposed to my normal chronological style. Apologies in advance.

I’m sitting in a hospital-style room in the Clinical Research Center which is in the basement of a large building on the UCLA campus. I just got my first IV chemo dose — the “Aza” or azacitidine. They gave me a little anti-nausea dose of Compazine before the Aza. The Compazine completely knocked me out… insta-15-minute nap.

I’m still tired but I don’t want to sleep more. I also feel pretty fidgety and unsettled… and it’s hard to concentrate. Not sure if that’s a side effect of one of the meds, but I’ve had something like this before. I think it’s the Aza.

Getting here today was nuts. First I had to walk to the Speciality Pharmacy at the Med Plaza to grab a med… was supposed to grab two but only one was there — long story. Then I had to walk to this research center which was really hard to find. Apple Maps walking directions just took me around a big block and ultimately to some abandoned parking lot next to a courtyard. I later learned that an entrance to the Research center was directly across the street from the Med Plaza. Duh.

I left myself all kinds of extra time, so when I finally found it — after asking 3 different people; each of whom pointed me one step in the right direction — I was still 5 mins early. Yay.

Been here since about 8:55am. We’re waiting on the Venetoclax which I should have taken a couple hours ago. Hopefully it will come soon because I (apparently) need to get a blood draw *6* hours after taking it… and it’s already 12:09p. This facility closes at 6:00p, so… 

The drive down yesterday with Brown was long and tiring but really nice. Was great to get that catch up time with my oldest and dearest “SF friend.” Here’s a pic of us in our matching Duke & Duke shirts when we stopped for lunch at In and Out Burger.

Dave and I met in June 1999 at BEA/WebLogic. 6 years later he married Heather and me.

There's a whole lot of nothing for most of I-5 but as you approach LA, it sure is gorgeous!

Despite his staying in the city and our moving to Marin, we’ve remained best buds. 25 years. Wow. Dave and Laura even came to the Chum gig last Friday in Albany. The gig was truly unbelievable. So much support from friends, fans, former co-workers. So many people attended… at least 6 that I counted took a plane (and that’s not counting Eric (our guitarist) who flew from Sweden!)

Not gonna recap much else about the show but here some links:

• archive.org (audio of the show)
• Facebook post (setlist and more)
• Pickles' post (with some vids)
• Matty’s album (includes pics and vids from show and other stuff from the weekend)
• art of the awesome t-shirt that Chad, Eric, and Malin came up with

The band in the shirts.

The Salesforce crew pre-game dinner. What a surprise!

Here's a pic of me (in the the shirt) and my awesome nurse practitioner (and friend) Lisa at setbreak.

Meanwhile, my buddy ejs was taking a set break nap!

Speaking of nurses, still no sign of the nurses with the Venetoclax. I’m getting very antsy. We need to get this going. :|

What else? Oh yeah… lodging. 

So I was supposed to be staying at this place called the Tiverton House. It's a ~100 room hotel just on the edge of UCLA campus and is designed for medium to long-term outpatient folks like me. It’s a no-frills place but it has a bunch of amenities helpful for people in treatment, like a nice size fridge in the room, a common area to make meals and even a 24 x 7 coffee and tea station.

Apparently there weren’t six contiguous weeks for a room available so for at least my first 12 days I’m staying in this fancy-schmancy hotel and conference center on the UCLA campus. It’s super nice, and don’t get me wrong, I’m not complaining, but it’s a bit more work for me to take care of myself at this place. My support team is contacting them to see if they can bring a little fridge to the room that will help with things like leftovers and having juice on hand etc.

On the plus side, this place has room service, I’m just not sure how much of that will be covered by the budget of the trial or whether all that stuff will be out of pocket. Ralph’s + fridge for most meals is a bit more economical, so hoping to make that happen.

Here's a pic of my room and the view from the window from the night I arrived.

This morning I got a cool panorama while this bus was slowly moving in the little loop right outside my window. Made for a nice shot.

1:16pm. Still no news on Ven. Man, this Aza is making me so jittery. Not a good combo.

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Wed Mar 20, 2024

AML 3.0 Day 2

The rest of day 1 was a big fuzzball whirlwind. We finally got the Ven around 2:10p. I had fallen asleep — the Aza crushed me — and I was pretty out of it when the Ven arrived. Got the whole big Ven packet (since I’m gonna have to take a lot of it on my own in the coming days/weeks) and a workbook log. Since a lot of this will be totally out-patient, I need to log the exact date and time of the doses I take every day.

We needed to do a blood draw 4 hours after I took the Ven so that kept me there until 6:15p. Also, 4 EKGs spread out throughout the day. I wound up falling back asleep for 90 mins — Slept. So. Hard. — and got up just in time to watch Floyd’s varsity baseball game against Novato. He pitched 6 2/3 innings but wound up taking the loss. He exited with the score tied 1-1 and 2 on, 2 out in BOT7. Lazlo came in and the next batter hit a walk-off homer. That Novato team has some real bats. That Floyd only allowed 1 run (before he exited) was just incredible. Super proud of you, kid! Most of the Novato starters were kids he played on Stings/Volt with (e.g. Cohen and J.P.)

You’d figure with that 90 minute nap it’d be hard to sleep, right? Just the opposite. I slept from about 8:30p to 6:00a without any kind of sleep aid. I guess the chemo really does wear you out.

As I was dozing off this crazy loud announcement came over the room speaker asking the “unlawful congregation” to disperse. 

Things were still barricaded off this morning so I asked the cops what was up. They said that there’s some 2-day conference of the UCLA Board and students tend to come out to protest, sit-in, try to block it, etc. Hooray college!

So now (Wed 10:30a) I’m back at clinic, just got a blood draw, and I’m sitting out in the waiting room. This old guy is being loud as fuck on his phone, even though there’s a big sign telling everyone to use earbuds. Ah, finally a nurse came out and told him to STFU. So he got off his phone but his text tones are still as loud as I’ve ever heard. What is it with some people?

Anyway, with no port (PICC or Hickman) it’s a lot of vein pokes. I’m used to it at this point though. I bet I’ve had over 1000 of these over the course of my treatment. The results of the blood draw should be back shortly. Yesterday my platelets were around 23. Hoping they don’t make me get a transfusion today. I’ll need one — a lot more than one actually — at some point… just hoping it’s not today. 

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Day 2 - 1:30p

Just had a mini-snooze, and I’m going to try to wrap this up and post. Counts continue to fall but no transfusion needed. I left my water bottle in the exam room. Hopefully Bruck finds it. After leaving the clinic, I walked to Ralph’s to get some lunch and to scope it out for parking later. Now that I have a fridge, I’m going to go food shopping. Not today though. The protesting is still in full swing, and while I’d be able to get out and back in with my car, it’ll be easier tomorrow.

This is what it looked like when I got back.

“What do we want? Fair contracts! When do we want it? Now!”

OK. I thought I'd have time to post this before my return appointment, but they just called me and asked if I could come back sooner. So ima walk back down to the medical center now and post this a bit later.

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Day 2 - 6:00p

Back in the room after my Aza infusion and another walk to Ralph's. This time I grabbed a couple days worth of staples. Only enough so that I could comfortably walk with one grocery bag in each hand. My goal is to walk to everything, as long as I am physically able. I would rather walk to Ralph's every day and just get a little here and there than have to get in my car. There are still things I want to get (e.g. V8 and other juice) but that'll have to be tomorrow.

Lots of steps over the first two days. Gotta keep it up.

Oh, and potentially good news... according to my infusion nurse today, it's likely the Compazine that made me all jittery yesterday so we skipped it today. So far no jitters, so that's good, but I am feeling a bit nauseous. Time for an Ativan.

OK, gonna listen to Orion's team hopefully close out this game. Let's go SRLL Juniors Red!!

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