Cold As A Razor Blade
Thu-Fri Jul 28-29, 2022 -- Day +224 +225
Blogging tunes: Phish - Wantagh, NY 2022-07-27
Just poured myself a nice vodka tonic -- probably my third drink in as many weeks -- and sat down in the gazeebal area (as we call it) out back to write. I'm two songs into last night's show which sounds unbelievable on my outdoor sound system (Thanks, Casey!)
The Phish 4.0 Summer ’22 sound is just so big and airy and LivePhish mix is just perfect. Page’s hammond sounds as big as any organ I’ve ever heard. Everything is so clear. It’s really amazing. A couple friends have done the past few shows and consensus is that last night was probably the best of the tour. Psyched to check it out while I write. Before I get into it, check out this poem by Rumi. We'll get to this later in the post.
Can't believe it's been almost a month since my last post, but I guess it makes sense. I've been super busy ramping up at Guidewire (see previous post for more on that) which, despite a surprisingly high level of chaos, is going pretty well. And there's been baseball tournaments every weekend. In fact, I'd be driving to Mistlin on Saturday if not for an elbow injury -- Floyd's, not mine -- but we'll get to that in a bit.
I feel incredibly lucky to have landed a solid position at a stable company when I did. The tech market has gotten crushed lately, many companies are slowing the hiring, and based on the lack of any openings whatsoever at my former place, I think I made the right choice by getting out of there when I did.
That said, I (kinda stupidly) didn't realize how much energy the ramp up of a full time job would really take. During the first stages of my recovery, I was fortunate enough to only have to work part time. And once I decided to bail from Vineti, there wasn't much point of busting my ass. Had I not gotten COVID in May, maybe I'd be better by now... after all, I've been off the Tacrolimus for almost two months.
But while things are going incredibly well as far as my UCSF team is concerned, I am still really fucking tired, all the fucking time. If I want to feel anywhere close normal, I need to sleep 8.5 to 9 hours a night and nap for 20-25 minutes in the middle of the day... more if I do anything even mildly strenuous. 6.5 to 7 is probably plenty for you and it used to be plenty for me. So that's essentially 2.5 hours of each day that's just gone. So what's getting left out? Everything: exercise, music, social time with friends. It's all been curtailed.
Really hoping for some rest, general catch-up and focused music time this weekend since there's no baseball tourney. Chum has a gig in 3 weeks (and another 4 weeks after that) so I have about 35 songs to learn/dust/polish in the next few weeks and I'm only about 1/3 done. I used to be able to put on the headphones any night I wanted starting around 9:00p. But with my work day often starting at 7:00a or 7:30a, I need to be lights out by 9:30p, sometimes earlier. And I'm usually so beat after dinner that I just wanna watch The Feud and then wind down. Steve Harvey really is the man.
So wait... no baseball tourney? With two kids in Summer travel ball? How is that possible? Well, Floyd threw out his elbow last Sunday. He was locating perfectly and looked to be on his way to a dominant win, but something felt off after his 4th strikeout (after only 1.2 IP) and he had to come out. We don't know how serious it is -- MRI pending -- but for now he's shut down for 6 weeks minimum.
Here he is pitching before the elbow problem:
And a pic from the seats at Billy Herbert field in Stockton -- taken before I got booted for going all Kyle Schwarber on the travel ball equivalent of Angel Hernandez.
So yeah, that sucks pretty hard. Silver lining? I don't have to drive to Mistlin, CA this Saturday for more 95ºF baseball.
At least he got to get his favorite fast food chicken after the games Saturday night:
OMG, more shitty baseball news. I parlayed the Phils -1.5 and OVER 7.5 tonight. This looked like the lock of the week, and I even predicted an 8-1 final. Well, it was 8-2 going into BOT9. The final? 8-7... and my parlay is a loser. Even 8-6 would have been fine. I've never been so disgusted with a win. Talk about a bad beat. Jeez'l peez'l. We suck, eh, Travis?
OK, kidding aside, last weekend crushed me. I had an LLS Board meeting (that I attended via Zoom) at 5:00a PDT Saturday morning. I managed to get a little nap before driving out to Stockton but the lack of sleep, the hot sun, and the atrocious umpiring was just too much for me. I realize that I've been trying to live my life as if I haven't been through the ringer. Well, that's just stupid. This relapse.... this treatment... this recovery... the anxiety and pressure of needing find a new job in the middle of it all... ramping in the new gig... and all the while trying to just act like everything's normal... well that's not a recipe for success, gratitude, or happiness.
Now I've mentioned this before... and I have absolutely no ill will for Dr. Damon... quite the opposite... I literally love the man. He and his team (and Martin and DKMS and marrow.org and LLS) saved my life. But, he also said in 2017-2018 that I was cured and that "chance of relapse was nil." Now I took that to heart. I was cured. I was in great health. I was going to live a long, healthy, active, energetic life.... where 6.5 hours of sleep per night would be plenty. This relapse turned my world upside-down and I really haven't properly dealt with it.
This came out pretty clearly when I kicked off the LLS Board meeting with the "Mission Moment" -- it's something we used to do to start meetings and the new Chair is bringing it back. He asked me to do it this time -- i.e. give an update on my journey -- and of course I said yes.
Now when I'm asked to tell my story, I never rehearse... I just wing it. And it's usually all up-beat, rah-rah, kick its ass, Light the Night, Big Climb, yada yada. Well this time it went to a pretty dark place. After I gave the basics of my health, counts, meds status, etc., I started talking about how absolutely bizarre combination of knowns and unknowns was maddening and how I feel now that I'm (mostly) on the other side. What do I mean?
When I went through this shit the first time, I had this whole "let's kick its ass" attitude -- I mean, it's still the name of this blog, right? And that was the right thing... then. I was 40, my kids were 2.5yrs and 6mo old. I had no idea what I was going to be facing... my UCSF team knew... it was known to them, but it was going to be an unknown journey to me... an adventure.... a shitty adventure but an adventure nonetheless... and one I was determined to power through.
[Phish note: Great show.... first set was money -- It's Ice flubs and all -- and what a fun second set so far. Don't Doubt Me was a surprising treat and the segue into Golden Age (and eventual the drop into the correct key) was awesome... and I'm not even up to the Fluff > Weekapaug!]
When I relapsed, no one could believe it. They didn't think it could possibly happen. OK... that's not a great place to start. The brightest minds in the field and they were floored? So they didn't know why it happened, but they knew the treatment... i.e that we would have to go through the whole process again (chemo, chemo, chemo, stem-cell marrow transplant, recovery, recovery, recovery) and that process would basically be the same -- though the induction regimen would be a little different based on some of the advancements over the last 10 years.
While they didn't know everything -- e.g. they didn't know if we should use the same donor, search for a better match, etc. -- it is was mostly known to them. The difference is that this time it was also known to me! The moment I saw the blood test results a week after I got back from Dick's last September, I was like "holy shit, the next year+ is going to totally suck... and that's the best case." But again, I was like "let's just plow through. Let's kick its ass."
The biggest unknown... what would be the result of this treatment? After some detailed analysis and research, they were pretty confident that going with Martin as the donor was the right call and that, based on my first battle, the treatment would be successful. But what does successful mean? A cure? Another x years? Is x known?
So how did this play into the LLS Mission Moment? The darkness was essentially my assertion that if this treatment only buys me another 10 years, and there's no major advancement in treatment between now and then, that I likely wouldn't go through it again. My (left-brained) rationale? I'd be 62. The kids would be grown and out on their own. Why put myself through all that shit again when I can just chill and be comfortable on the way to whatever's next?
This led to a really interesting board discussion about the role LLS could/should play in the mental/emotional health of survivors. One of the board members essentially said: "Did you hear what jg just said? He said he'd rather die than go through the treatment a third time. Wow!"
Wendell had an interesting take on this on Tuesday. He basically pointed out to me that it seems like I'm just trying to "put this behind me" and "get on with normalcy" without really taking any time to acknowledge or process my feelings. Sure I need to take care of the essentials, but how am I carrying the weight of my experience? How am I working through the anger and the grieving? The analogy he gave was what if someone really close to me had expectedly died? Is surviving a nasty cancer (a second time) really all that similar to the anger/grief you'd feel if close friend or family member died unexpectedly? I hadn't really thought about it that way.
Essentially, his point was that: I've been through a shit load and I haven't really gone through all the phases required to really heal. Not just the leukemia healing but the whole body, mind, and soul healing. You can't be like: "ok, let's just get this fucking treatment over with... bring on the chemo... the transplant... all the meds... ok get off the meds" and just resume life like nothing happened. And as a result of not really processing all this stuff, I have some big unresolved feelings that have been coming out in all different ways and it's been (negatively) affecting my outlook on life... present and future.
So I gotta figure the right balance between work, rest, exercise, fun (e.g. music), and what I really need to do in terms of healing. I'm open to suggestions. :)
The poem by Rumi, which Tamara used to close out the Daily Calm I happened to do the day after my latest Wendell appointment -- and which I shared at the top of this post -- seems to line up nicely with how I need to proceed. If you've made it this far, scroll up and read it again.
On a lighter note, Heather, Orion, and I went to The Stranger Things Experience in San Francisco last week. Super fun. We even had dinner at one of our old favorite tapas places in the Mission. Just doing "normal" things feels really nice.
You need 3D glasses for the last one (which I wasn't supposed to take a picture of.)
Oh and we got a new kitty (mostly because Mr. Palmer never came back). Her name is Freya but we're all just calling her Frito. She's a crazy energy ball.
... and she loves chasing her tail: