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Tuesday, September 14, 2021

The fog has just lifted revealing the gray

 Blogging Tunes - SomaFM: Drone Zone

We're all just in shock... and honestly, it's going to take a little while to get back into the "kick its ass mode." Right now, I'm just angry (with bouts of sadness) but I'll get there.

Looking back, the last 4-5 weeks feel pretty similar to Sept/Oct 2010 (minus the night sweats and the mouth sores.) Maybe that means it's not exactly AML... that it's some other major bone marrow dysfunction that won't need as aggressive treatment.  

Still, it all lines up: increasing fatigue; little signs of energy loss escalating to full blown shortness of breath; increasing heart rate at rest; inability to work out; the whole nine.  Now I can't even walk around without feeling like I'm going to pass out.

Still, back in 2018, we were told "chance of relapse is nil".  No one else relapses 8 years out (let alone 10) from a successful BMT, right?

Yet here we are.  My blood counts are fucked.  Everything is low -- well except iron-related stuff.. that's all high.  The condition is called PANCYTOPENIA.  What does it mean?  What causes it?  How do you pronounce it?   How do you treat it?  You can find all that out here.

So what now?  Well, on Saturday I was admitted to Marin General for an emergency platelet transfusion where I stayed for a couple nights.  Gotta say, the new building is amazing.  Nicest hospital I've ever stayed in.  They found blasts in the blood so it's looking like some kind of leukemia.

So based on those results, yesterday I had a (very long and painful) bone marrow biopsy.  You really don't want one of these if you can avoid it.  Hey, at least I "tolerated it well!"  πŸ™„


After the BMB they sent me home, so I'm getting to enjoy a little bit of beautiful San Rafael weather and some time with the fam.  

We'll start to see some results from the BMB tomorrow and then I see Dr. Damon at UCSF on Thursday.  What we don't yet know is... will that visit be an "appointment" or will I be "admitted" so we can start whatever the hell we're going to need to do.  If I do get admitted:

  1. @Lisa M, ima come lookin' for ya on 11-Long or 12-Long or whenever you are!
  2. @Benji, we're going to be seeing a lot more of each other, I guess.
  3. @Brown @Raffi, depending on visiting rules, it would be great to watch Eagles/Niners with one of both of you this weekend.  Actually, now that I think about it, maybe better to watch TNF with Brown and Iggles with Raffi.  #amirite?
  4. @Schiff, you missed round 1 of this shit, you can make up for it now. :)

I'll post frequently here with updates. So check back often.

If nothing else, maybe we'll get the fundraising cranking for this year's Light the Night.  Heather and the boys just got a fundraising page started, it seems.  Thanks, love!

Speaking of Schiff... Hey Chum bandmates: at least we got the Dick's shows in, right guys?

Ha!  I even got super tripping dreadlock dude in one of these selfies!  See yellow arrow in second pic.  🀣






Here we go again, gang....


30 comments:

  1. I am so sorry to hear this JG. Sending you lots of love and positive vibes! You got this (again)! XO

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  2. We’re just a few steps and a text away.

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  3. Well shit. That sucks dude. I'll do all the positive vibes and keep y'all in my thoughts and I hope this ends up being a doddle. Kick its ass dude... kick its ass!

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  4. stay positive JG, I'll be rooting for the Eagles this season too, thinking of you.

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  5. Fuck! Pulling for you JG. πŸ‘ŠπŸ»

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  6. We are rooting for you John ! Staying positive and sending healing light your way. All our Love , The Contini Family

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  7. Thinking of you and your family! I know you’ll kick it again!

    Peace and love,
    Maxey

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  8. There are no words. Just sending massive heartfelt positive vibes your way.

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  9. Oh man! That sucks!!! Sending you and the family lots of positive vibes and healing thoughts from Thousand Oaks!!! No doubt you'll kick its ass again!

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  10. Sending positive vibes your way, John!

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  11. WTF?? You’re a fighter Jaggu. If anyone can beat this, it’s you. I know you’re going to KIA. Will be following your updates and sending you good vibes every day!!

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  12. Sending you so much strength and healing wishes, JG. You've got this.

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  13. Stay strong. We love you. You got this!

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  14. So. Much. Love. To you Heather F & OG.

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  15. Sending you so much strength and love JG!

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  16. Will be here to support you just have you have done for me.

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  17. I was really sorry to hear the news, but I have no doubt about your strength! Keeping good thoughts for you and your family!

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  18. Good job TOLERATING the marrow drilling.

    You got this meng!! πŸ™ŒπŸ™Œ
    Jxn

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  19. You got this ❤️

    Show that shit who's boss!!!!

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  20. Hi John! Sending lots and lots of positive thoughts/vibrations and lots and lots of healing energy!! I love you very much! Mom

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  21. Oh, no. I am pulling for you. Sending you every kind of good wish that I can.

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  22. Thanks all. Fun times. So.... how can so many people be commenting as "Unknown" when the blog setting requires a google account? Weird.

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  23. The Kushner-Ng fam is rooting for you as you once again kick some ass, JG. Thanks for sharing your journey here so we can follow along and offer our support.

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  24. JG you have mountains of people behind you and the estebez family is sending all possible healing vibes your way.

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  25. Ima be here when you come-a lookin, on 12. Would be funny to see you sneaking up the stairs with your IV pole. A hell of a lot more fun though, would be a gathering at a bar with real pals and not these G-damn Trans Pals.

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  26. I'm in shock. I'm so sorry you are going to have to kick its ass all over again, and will be so happy when you do.

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  27. The Tjernlund-Barr family is thinking about you and your family, JG. You got this! Thinking about you and your appointment today. Tricia & Anders

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