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!




I Hear the Sweet, Sweet Sounds of Heaven

Tue Apr 30, 2024 (would be my dad's 97th bday!)
AML 3.0 treatment - Day 43 

Super quick update. We're officially on treatment break between treatment Cycle 1 and Cycle 2. All critical counts are recovering to the point where my team has blessed my trip to NOLA -- some charts below.

Approximately 51 hours from now, The Rolling Stones will take the main stage at JazzFest. Dougie and I planned this trip 6 months ago. No way a little thing like AML 3.0 was going to get in the way.


If y'all haven't checked out the new album, you should! And the big question... is Lady Ga Ga going to make an appearance to do her song?

Of course I'll be covered head-to-toe to minimize sun exposure similar to the Bader Field Phish shows in 2012 (a year+ after first transplant). This time I have lightweight SPF 50 hoodies!


So gonna do some work today, maybe a low-impact Peloton ride -- my legs have been somewhat messed up since the relapse and I need to make sure I can bike in NOLA -- pack for the trip, and go to Floyd's baseball game. Then off to MSY tomorrow, back Sunday, then UCLA next Tuesday for Days 1 to 7 of Cycle 2. Remainder of Cycle 2 can be done at home with support from UCSF and Marin Health.

I've been stretching, walking a lot, even treading water -- yeah, pool is open! -- but legs still seize up and hurt from time to time. Gonna be like 20k steps a day in NOLA plus cruiser biking. Legs, don't fail me now!


Here are the deets of the counts. The takeaway is: my counts are rising on their own. The red circles and squares on the Hemoglobin and Platelet charts indicate where I needed transfusions during (and just after) treatment. You can see that the transfusions gave me a boost but the counts started falling shortly after.

Conversely, my counts from yesterday show that the Hemoglobin and Platelets are recovering on their own. This is exactly what we wanted. 



We were hoping the Absolute Neutrophils would be up to 1.0 by tomorrow -- looks like maybe we'll be at 0.6 -- but 0.4 is much better than 0.1.


Peloton ride complete. It was a 5km Scenic Ride.  It's quite a bit less than that each way from our NOLA hotel to the Fairgrounds so I thought this would be a good test. I barely got out of "Zone 1" but who cares. I did it and my legs feel ok, so... onward and upward!


That's it for now.

iwkiaaaa

Comments

  1. HELL YES!!!! Enjoy the hell out of NOLA and we’ll look for updates about MUSIC in your next post! ;-) Love ya bud - Nabib

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  2. Have an amazing time! Love to see the numbers improving- make sure you post pictures!!! Love ya❤️❤️

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