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The San Francisco Light The Night Walk is on Thursday October 6, 2022. Please help me reach my fundraising goal so we can end blood cancer!


Who Knew a Day Would Turn Into a Week?

Friday January 7, 2022 - Day +22

Blogging Tunes: SiriusXM Phish Radio: 12/31/2021

Howdy friends, supporters, and blog readers.  Apologies for the lull in posts.  This week has been dominated by extreme fatigue.  I finally got a solid 10.5 (mostly uninterrupted) hours of sleep last night, so I'll try to use this little bit of morning energy to get something posted here.

And how perfect... SiriusXM Phish Radio just started a re-broadcast of the 12/31/21 show which Heather and I streamed (and loved) the night I got home.  yeP!, as expected (and mentioned on the last post) UCSF discharged me at around 10:00a on 12/31/21, getting me home in plenty of time to get settled and stream the NYE Phish show (from the Ninth Cube, since MSG was canceled.) 

 Here's a live-stream-jumping-kitty action shot:

Streaming Phish 12/31/21 - Katniss jumping!

Seeing Phish live on New Years Eve was a tradition in '90s.  I think I saw 8 of the 10 NYE shows that decade starting with 1990 in Boston (with Chucklehead!) Of course, I missed Big Cypress (with the famous midnight to sunrise set) since I moved to California in Spring '99.  In fact, I was working the Y2K shift at Weblogic while Phish was playing in Florida.  I think we all got $2500 bonuses for working that 8:00p to 4:00am shift, right, @Gaurav?  😂

Since the kids were born, the tradition has been the webcast.  When the kids were younger, being awake for "Happy New Years" was the goal.  This meant staying up til 9:00p PST which is when New Year's would occur during the Phish Stream (since the shows were always at MSG in New York)

It's hard to describe how comforting and grounding the show was for Heather and me... and the band really put on a nice show.

For comparison, here are a few from NYE 6 years ago.  :)

Phish 12/31/2016 (1 of 4) - Floyd dancing

Phish 12/31/2016 (2 of 4) - Orion fading

Phish 12/31/2016 (3 of 4) - not a bad scene

Phish 12/31/2016 (4 of 4) - Fun with Orion 😂

Of course, being home with family and the cats is priceless... the isolation of the hospital takes its toll in so many ways.  Here some other joys of being home:

  • Sleeping in my own bed
  • Taking a real shower in a real bathroom (and not being connected to an IV!)
  • Taking a walk around the block in my neighborhood
  • Eating non-hospital food!  (appetite and taste buds are so-so, but better than December)
  • Hugging (and hanging out with) my wife and kids
  • Hugging my cats (well, one in particular)
Never have I loved a cat as much as this darling girl.  Sorry, Romeo.


So the hard part's over, right?  Things will be returning to normal soon?  Not so fast.  Obviously, the transplant itself is a key milestone, as are the "counts starting to come up," no fevers, etc., but this is just the beginning of the recovery which can take as long as 12-18 months to fully get there.  So what does that mean both in terms of daily life this month and the next few months?  This detailed web page covers just about everything you'd want to know.  With respect to returning to work and normal activities, it says:

"The earliest you can go back to school or work is about 4 months from the time of your transplant. This time frame can vary from person to person and depends many things. 

Making the transition back to your usual lifestyle can be hard. Some people have talked about feelings related to changes in their appearance, such as hair loss. Others have trouble concentrating or maintaining their attention span. Many can’t keep up their former pace."

With respect to this month, here's what it looks like:

Pills pills pills.  I have to take so many meds, a normal AM/PM pill box isn't enough.  I have a 7x4 one like this (though mine's not as pretty) to keep it all straight.  Why so many meds?  Essentially, it's all related to the Tacrolimus which I need for immunosuppression so that the new immune system doesn't come online too quickly.  So as long as I'm on the Tac, I need to take a ton of other stuff.

Then there are the UCSF visits twice a week:
  • I go to UCSF Mon/Thu for labs and then meet with Dr. Damon (or delegate) to review where things stand.  Based on the numbers, we'll tweak the meds or not
  • BTW, thanks for all who signed up for rides in Jan.  All dates are now filled!
  • There will likely be opptys to drive (and catch up with!) jg in Feb too.  If you want to get involved, just text or FBM me.
Here are the labs from 1/3 and 1/6 (and some previous numbers from the hospital for comparison)


The counts all look fine.  Only thing mildly concerning is how far off the ANC is compared to the 3.99 spike from 12/31.  But that big jump is from Neupogen the shot I got on 12/30.  ANC takes longer to come back than the other labs, so the 1.47 result wasn't available when I met with Dr. Damon on Thursday.  I guess I'll find out what he thinks on Monday.  RBC and Hemoglobin holding steady and platelets slowly rising.  No transfusions anticipated.  If all goes really well, we can hopefully reduce the appointments to once a week in Feb.

UPDATE: Dr. Damon just emailed me back.  He's not worried about the ANC at all, especially since platelets continue to rise.  As I suspected, the spike was from the Neupogen shot.  Whew.

IV magnesium every day:

  • Every day I need to be hooked up to an IV for 3-4 hours to get a bag of magnesium oxide
  • Nurse Heather gets it all hooked up, the mag flows, and I get really tired as it's happening
  • I still have a permanent port with three lines hanging out of my chest, so it's pretty easy to do blood draws and IV stuff.  I'll spare y'all the pic.

    IV mag and Katniss

    In other news, Heather's mom arrived yesterday and will be staying with us for a few weeks to help out around the house and give Heather a much needed break from essentially being a single parent while I'm going through this.  Thanks, Gramma!

    Let's see... what else... people have been asking about the next phase of Meal Train.  I'd say, keep checking the site every week or so.  We're gonna hold off on that while Gramma is here, but will definitely be picking it back up in late Jan or early Feb.

    Also, a little more info on The Big Climb.  My fundraising page is actually live right now if you wanna get a head start, though it's not customized at all.  A friend and I are still working with LLS to figure out how we're going to arrange the teams, etc.  Once that's figured out, the page will get some love -- probably early next week.  Big Climb info will be updated periodically on the blog header visible on each blog post.

    Now, as you can imagine, during this whole AML 2.0 thing, I've been in constant contact with Martin.  He recently buzzed his hair and sent me this pic where I think he looks like a total bad-ass. 😍

    My blood brother, Martin

    But what would make Martin's bad-ass-self even MORE bad-ass?  The same shot with his Eagles beanie (and a little more fierceness in his expression!) 😂

    💚 My blood brother, Martin, the super-duper-bad-ass! 💚


    And lastly (but certainly not leastly), huge shout out to Troy (of LLS) and Rebekah for sending some Philly love in the form of Cheesesteaks, Halva Babka, Rugelach, and Donuts.


    Unbelievably generous and super thoughtful.  Now the question is, do we eat them tonight (like the instructions say) or 'fridge 'em for a day and have 'em during the Iggles game tomorrow night?

    Long road ahead.  One day at time.  Go Birds!  Go Martin's cells.  Go JG's energy (slowly but surely.)

    iwkia...a

    Comments

    1. Love these updates. Happy to help with rides! Martin is a badass. And so are you. Keep trucking.

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    2. Thinking about you JG. Every day. Keep kicking ass you inspirational MF.

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    3. Eagles beanie shot is, indeed, bad ass, as is kitty action shot ❤️ Orion passed out mustache look is too :) xo

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    4. Dude - love the smile in the IV mag and Katniss pic. :) Sounds like a full time job just to recover. You got this.

      Great to see you at home! 🤗

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    5. Badass blood brothers powers IGNITE! :-)

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    6. You are incredible so glad you are home and have your amazing family and fur babies around you!

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    7. Thrilled to see you on the mend JG! And that action shot is epic!

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    8. I'm so glad to see you back at home, and with cats! Keep on going, my friend - you're amazing.

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