May 31, 2024: jgwkia has moved to substack


JGWKIA (jg will kick its ass) has moved to substack. You can access (and subscribe to) it by clicking here.

The full URL to my substack is http://jgwkia.substack.com/. There will be no more new posts here, and eventually jgwkia.com will point there, not here. Bye bye Blogger!




Three is a Magic Number

Tue May 22, 2024
AML 3.0 treatment - Day 65 (Cycle 2 Day 15)
Blogging tunes: SomaFM Drone Zone

Big stuff to report on today, so set yourself as "away" on Slack for 5 minutes and settle in.

Those who are following along know that my Aza/Ven/Zifto treatment cycles are 4 weeks -- exactly 28 days. The first week of each chemo cycle is literally a Week of Hell. The good news is that by the middle/end of Week 2, it seems the hell is over. Major fatigue and sluggishness are still there, and I still need periodic blood and platelet transfusions throughout each cycle, but I'm able to function much better, re-engage work a bit, and take care of some basics around the house.

After Cycle 1, Dr. Chai-Ho wanted to do a two-week break before Cycle 2 began. I lobbied for a 3 week break so that I could go to JazzFest and she agreed. In the past few days we've learned the following two very important things:

  1. The 4 week cycle followed by a 3 week break will be the standard for the remaining cycles.
  2. Initially, we thought that I might need 4 or even 5 cycles, but based on how I'm responding to treatment, the teams agree that 3 cycles will be enough to ready me for transplant.

So... today is: Cycle 2 Week 3, Day 1 (aka C2 D15). Expand this pic, grow out your window (or pinch/zoom on phone), and try to take it in because we now know what the next few months (and beyond) will look like.


Here's how to parse it:

  • Purple square = today
  • Green circles = start of 4 week treatment cycle (SCx) -- Cycle 1 not pictured
    • first week of each cycle is hell
    • by middle of second week it's a little better
    • third and fourth weeks I'm at about 50% energy
  • Red circles = end of cycle (ECx) -- 4 weeks after the corresponding green circle
  • 3 weeks recovery between cycles
    • start to feel a lot better during these recovery weeks
    • by the third week I'd say I'm close to 80%
  • Blue rectangles = (hopeful) family events
  • Orange is (likely) time in LA (either for cycle start or BmBx)
  • Pink dates in August = in-patient for stem cell transplant begins at UCSF
Why is week 1 so hellish? For starters, I get three shots of Azacitidine -- very intense chemo -- in my stomach for 7 days straight. That's 21 shots. And here's what it looks like (feel free to scroll past it if you're squeamish) a week after the shots ended! All the discoloration is from the shots. Sheesh.



Looking more closely at the pink (TWSS! - thanks, Ben)... August 12th will be "Day -7" -- the admit day to UCSF -- with transplant targeted for August 19th. That means, if all goes well, the family will be able to go to Zion (as planned last fall!) the week of August 5th.

Oh, and I probably should have mentioned this from the get-go... UCSF found a 12/12 match in the donor database -- yeP! it's a 12 point scale now -- so that's very promising. We don't know anything about the donor other than that they are from Europe. If the donor is from a different part of Germany, we could have some serious problems with Bundesliga rooting interest, right Martin? 😂

Typical hospital stay is 3 weeks post transplant... so that'd be "Day +21" or -- if my math is right -- September 9th. Assuming the transplant works I'll get discharged right around then and will be in major recovery at home for the next several weeks.

I'll also need to go to UCSF twice a week in Sept/Oct (post discharge) so will be calling on the community (and folks who helped last time) for rides to and fro. I'll reach out separately to the folks who drove last time. Your chance to see jg!

So what's on tap for the blue rectangles? Well the one at the beginning of May was JazzFest. The ones in June and July are travel baseball tournaments for Floyd that require air travel. He's actually got 'em just about every weekend of the summer. Most are reasonably local (like Sac and Stockton)... for most of those, I'll be sending him with one of the team dads.

First week of August is Zion and Bryce. This is gonna be a stretch any way you slice it, but it's been planned for a long time and we really want to do it, even if it has to be low key. The last time we went was Spring Break 2023, so we couldn't do The Narrows. Floyd really wants to do it so that's why we booked August. Since that will be the last week of C3 "recovery" I should be up for The Narrows and some moderately strenuous hiking. Angels Landing again? No way.

What else? On Saturday the 3 other Chum guys and another keyboardist played a house party in Oakland. I felt well enough to pop by and sit in on a couple tunes. So awesome not to have to schlep any gear or deal with setting up or breaking down. :) 


This single beer is the only drink since JazzFest. And check out the Bojon koozie. 

But it was Chad's 7-year old son Quincy who stole the show sitting in on drums for a few tunes. Here's a vid!


iwkiaaaa

Comments

  1. Dude - only 3 cycles is YUGE news!!! Only one more cycle to go!

    Martin’s got a potential Deutsche-bro-sibling with that 12/12 match. Woot! The JG collective is growing. Are you achieving assimilation of unity consciousness yet? LOL

    That’s wild. Are they basically matching Martin’s immune system for that 12/12 at this point or is it still some kind of other match to some other core JG-ness?

    I expect you to wake up speaking German. Genau.

    ReplyDelete
    Replies
    1. Brand new donor search. No clue if he/she/they are German. I'll be able to find out 2 years after transplant if all goes well.

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  2. Hi John,

    You probably don't remember me, but I was one of the people at Salesforce that was diagnosed with AML twice. After suffering for 5 years with my 2nd transplant, things finally stabilized and Ive been living what I would consider a stable life for the last 2 years. Today, I ended up getting a little sick, which for some reason made me think of you, and so I found this blog again and was shocked to hear about your 3rd bout with AML. John, you are such an inspiration, I cannot imagine how you are able to find the energy to do the things that you do, in the situation you are in. I'm sure that you will once again kick it's ass, you're the toughest AML survivor I know. I'd wish you the best of luck, but that doesn't seem necessary as you seem to be the kind of person who makes his own luck.

    ReplyDelete
    Replies
    1. Of course I remember you! So great to hear from you. Glad you've stablized and hope your recent sick has NOTHING to do with that fuck-terd AML! I'll take the good luck wishes! Transplant #3 is no joke.

      Delete

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