Please consider donating to Floyd and Orion's Light the Night campaign so we can cure AML (and blood cancer) once and for all.

Writt'n fire across the heaven, plain as black and white

Blogging Tunes:

  • 12U Steel (Orion’s team) vs East Bay Legends via GameChanger (Steel won 5-1)
  • Trey Anastasio Band - Sep 17, 2021 - Portland, ME - audio (welcome Dezron)
  • Alabama/Florida - video - 2T parlay: Alabama -13.5 / Over 60.5 (LOSE)

[Here you can see the blog post in progress on iPad, the Tide on TV, and the Bose speaker playing the TAB. Can you spot the Phanatic?  How about Dick’s tix?]

Warning: pics of very light surgery (PICC line installation) below.

…….

OK… strange IT problem to start the day.  Phone and iPad are fine, but MacBook and the WiFi aren’t playing well together.  So weird because last night laptop was great.  In fact, I was FaceTime’ing with my mom for over an hour watching Phillies/Mets and then the end of Giants/Braves — no issues at all.


Today, the behavior is: if the lappie is connected to WiFi everything is 100x slower than it should be… like internet apps take 2 minutes to launch.  If WiFi is off, apps launch in seconds.  Pinging the router with Terminal app just shows 100% packet loss.  Hard reboot and even OPT-CMD-P-R reboot didn’t solve. Could they be blocking my machine based on bandwidth used last night?  Feels like a lower-level problem. Hopefully we can figure this out before Monday or work is going to be a major problem.  IT ticket submitted.  Otherwise @Benji, gonna need your help. :)

It was nice to “hang with” my mom and watch the game.  I even got some “pub style” food for dinner: a really good turkey burger with fries.  Might as well enjoy it while I still have my taste buds, right?  So far, the food is *much* better than it was 10-11 years ago.

There’s a Chrome Book touch screen thingie for food ordering and other random stuff too.  UI looks like this:


Boom chicka bow bow!

Anyway, on to the real stuff.  I was admitted at about 3:30p yesterday and almost immediately got my PICC line put in.  This lets them draw blood or give me IV drugs whenever they want.


By this morning the PICC site was very sore.  Part of it is that my platelets are very low: 8 to be exact.

I also got some kind of a heart ultra-sound which went fine.  They just need to check the ticker before starting me on the poison.  No pics of that.

Next steps for today:

  • Platelet transfusion
  • Blood transfusion
  • Chemo begins
This whole thing is just so bizarre.  I’m seeing some of the same doctors as 10+ years ago and every single one of them is just floored.  Apparently the number of people on the planet with successful transplants for AML who relapse after 10 years can be counted on fingers (or maybe fingers and toes.) That’s like what… hitting a 20-team parlay?  @Travis, hook it up, brother. 

And this isn’t just the same thing all over again.  I mean… it kind-of is in terms of treatment — though this first round of chemo is going to be a little bit different — but it’s more about the emotions… my emotions, H’s emotions, the kids’ emotions.  There’s just no time to prepare.  It’s like, you go from “feeling a little off” to “not feeling well” to “in the hospital for 4 weeks of chemo now!” in only a few weeks.

How do I prepare myself?  How does H?  How is this going to affect the kids?  How bad will the chemo be this time?  Same as last time?  We just don’t know anything.  The outcome was great last time, but the process was a bitch.  Don’t let the rah-rah optimism fool you into thinking it’s going to be easy.  It fucking sucks — no two ways about it. Except this time it’s not all new.  I know the shit that’s coming and there’s nothing I can do about it except embrace it and fight.

Speaking of which, Heather recommended a great book that I’m reading — well listening to via Audible — called Miracle in the Andes.  A book of survival and inspiration is exactly what I need right now.  Thanks, babe. ❤️

Platelets just arrived.  McKenna’s gettin’ ‘em goin’ now.


IMPORTANT: I appreciate everyone who’s reached out to me (and Heather) via text.  We know everyone wants to express their love, offer help, talk, come to visit, etc. We’re all making a big adjustment very quickly… and as a result, we may not get right back to you (or get back to you at all.)  That doesn’t mean we don’t love and appreciate you.  We absolutely do.  And, please let us drive. :)

We’ll use this blog to keep everyone posted on what’s going on, and when we need help or support, we will ask.  ❤

Chemo starting soon.  Go Phils!  Go Giants (well, this weekend anyway.) Go Birds!

UPDATE: Woo!  Phils on regular TV!


I will kick its ass.

Comments

  1. Heather turned me on to that book as well, great read. Maybe you should use your phones mobile hotspot instead of UCSF wifi.

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  2. Our family definitely understands the emotions. Nothing to do but talk to them all as much as you can.

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  3. You've got so much on your platelet right now, but you can do this πŸ’œ

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  4. Ps. I'm reading this on my phone. Maybe I need new glasses, but - until I zoomed in on the photo, the phillies players looked like they'd been drawn as south park characters. And, really - they look so much cooler that way, imho.

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  5. I hate that you have to go through this again. Keep at it. Love you man.

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  6. JG - We only spoke once last year as I recovered from my own BMT.
    Felt a real affinity for you, and am reading every one of these posts to track your progress through this shitty time.
    Just want you to know there’s big love coming at you from down here in Sydney Australia.
    Josh

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  7. You got this, Chemosabe! πŸ™Œ✨πŸ™Œ

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  8. Fucking hate that you’re having to go through this again JG! Good thing you doubled up on the wings before that Turkey Burger! πŸ¦ƒ πŸ˜‚πŸ€£ - Jordan

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  9. Dammit! Alright, I'm with you on kicking this thing's ass JG! Thanks for the update, and let me know if I can help.

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  10. JG, Hey man, it's been a while. I really hate to see you going through this.

    ReplyDelete
    Replies
    1. well, I guess I should have logged in ;-) This is Spotswood

      Delete

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