Surfing with the Alien

Tue Mar 26 and Wed Mar 27 2024
AML 3.0 treatment - Day 8 and 9

Wed 7:00a - Prelude: I was going to post this on the evening of  Tue Mar 26, but things made such a turn (for the better!) yesterday late afternoon/evening that I decided to add more and post today.

First and foremost, thank you Heather for sending the cutest, snuggliest gifts ever. A ridiculously thick, fuzzy, oversized googly-eyed hoodie along with an-arms-outstretched cookie monster stuffie and cookie. Here's a composite sticker H made of me in the hoodie with Cookie Monster photo-bombing.

A few more:

These gifts, getting to watch Floyd's game yesterday, and being done with the Azacitidine -- more on that below -- feels like an inflection point regarding my energy. Only slept 8 hours last night and I actually feel somewhat-human today.

Floyd's line: 71 pitches (44 strikes) - 6IP 2H 2BB 4K 0R

And check out this nasty curveball.

Imagine you just got a fastball on the inner half, and now you get this!

* * *

Original post: When I was a freshman at UMass, a dude on our floor would crank Joe Satriani's Surfing with the Alien most afternoons and dole out the bong hits like they were going out of style. I've been fond of that song (and album) ever since.

These last couple days, it feels like I'm the alien. Each day I drag myself out of bed, assemble, take, and log all my morning meds, force myself to stretch a little, and walk from my hotel to the clinic or the research center. Life around me is blooming. Doctors, nurses, students... people of all sizes, shapes, and colors all doing their normal springtime college campus things. Today, it's absolutely gorgeous here and I feel completely out of place. I've got almost no immune system, my blood is FUBAR, and I'm doped-up on chemo. I'm walking at half normal speed and my heart rate is elevated.

It's like I got beamed down to this vibrant planet where everyone's alive with all this energy and I'm walking around just trying to put one foot in front of the other, get to where I'm supposed to be, and observe this foreign reality.

On Monday, I spent 9.5 hours in the research center. It's in the basement of this crazy-huge UCLA building. Within 30 mins of arriving, I got an IV in each arm because they not only needed to do frequent blood draws -- a requirement of Day 7 of the trial -- but I also had to get IV Aza, a blood transfusion, and platelets. Both IVs were essentially on the insides of my elbows. Any idea how hard it is to do something as simple as put on and take off a mask or take a bite of a sandwich when you can barely bend your arms?

So yeah, Monday pretty much sucked, but fortunately it was probably the longest day of the cycle in terms of being in the Research Center and now it's out of the way. Also, it was my last day of Aza (which is the only non oral med of this treatment) so the clinic visits (and all the pokes and pricks) are going to reduce from daily to every other (and possibly even every three) day(s). This means I'll have some free days. To do what? I just don't know. My hope is that I'll feel good enough to do a little work -- yeah, I'm thinkin' about you PROCOR crew -- explore the UCLA campus, find a piano to play, hell maybe even visit the beach one day or go to a baseball game (stretch goals!)

But the reality is, I've been so tired -- and the fatigue will probably continue through Week 2 into Week 3 -- that I barely have the energy to do the basics. So we'll just have to see. Every day is a new adventure. On Monday night I slept 11 hours and still felt like a zombie on Tuesday morning.

Making sure I eat enough is an issue as well. Almost nothing seems appetizing. Mr. Noodle is becoming the go-to place. Been there three times so far. Wor Wonton Soup and dumplings the first time, Pad See Ew the other night and Hot and Sour soup for lunch yesterday. Hoping not to need the Marinol (for "appetite stimulation") this time around, but I'll do it if I have to. I'm probably down about 3 pounds (in 8 days) so far.

As for now, I'm just trying to just be normal. Like channel normalcy any way I can even though I feel anything but. So, I'm sitting in the beautiful lobby of the Luskin Conference Center Hotel watching the SRHS baseball game (Floyd's pitching) on my phone -- thanks for streaming the video, Tory -- at this high top table and writing this blog entry. Both of my eyes feel like they have boogers but I can't seem to clear them. Hard to look at screens. This place has four flavors of "house made soda." I tried the "blueberry lime." Not bad.

It's not lost on me that part of the not feeling normal might be because I've been taking Avitan every afternoon... not because I need the Benzo but because Ativan is a pre-chemo-anti-nausea med and the normal one they give -- Compozine -- was making me feel jittery. Maybe that's making the mornings worse from a mood perspective. I guess we'll see... now that the Aza is done, there's no need for the Avitan so we'll see how I feel tomorrow. I certainly feel better now (6:00p.)

Wow. Floyd just got out of a 2-on 1-out jam with a huge GIIEDP.  But SR went quietly in BOT6, so now Floyd's looking for the complete game shutout. Come on, kid. You can do this! Oh, nvm, they're bringing in Marcos in to close. Hope that's just by design. Floyd's pitch count wasn't that high.  Bam! 1-2-3 TOP7. SR wins 2-0. Noice! Now I can listen to Orion's game. God bless GameChanger!

What else... yesterday was the first day of Zifto (the menin inhibitor which is the special drug on this trial.) The timing requirements for taking all of my meds is its own science. I'm basically going to have to set my alarm every morning, take the Zifto, go back to sleep, get up 2 hours later, eat something, then take the Ven and the Posa since the latter two require food and the former explicitly wants no food for 2 hours.

One thing that occurred to me is that maybe I could just take the Zifto before bed. I'll have to ask Amy (the UCLA version of Lisa) about that.

The other big time blessing here is the out-patient nature of this regimen. There is nothing more satisfying than a real hot shower in a real bathroom and a real comfortable hotel bed after days like this. I would be going absolutely bonkers in some shitty hospital room.

Regardless of the ups and downs, here's a good reminder of how to approach life:

I'm also feeling like I might be ready for some company soon. Markus, Hess, LAG, Winzie, I'll be pinging y'all shortly. If these next couple days go OK, I should be up for visitors this weekend. Chadwick, looking forward to seeing you too.

Lastly, I started a new show -- well new for me -- on Prime called Reacher.  I guess the Tom Cruise movie wasn't great but this Prime show is awesome.

iwkiaaaa.

P.S. From the Blogger stats, it seems that if I don't post on Facebook, views are way down. So a couple things: 1) if you didn't read the previous entry, and you want to, here it is. 2) I won't necessarily post on FB, so either FOLLOW (blue button above -- though some tell me they are no longer getting notified of new posts) or check back in every few days.