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And Tonight Mr. Kite is Topping the Bill

Blogging Tunes:
  • SomaFM Groove Salad
  • TNF
  • Giants/Padres

Summary

Here we are at Day 14 of my first AML 2.0 UCSF stay and things continue to change rapidly with developments day by day, if not hour by hour.  I'll try to provide a reasonably comprehensive update of everything that's happened over the last 48-72 hours and answer all of the questions you may have.  I'm sure I will fail.  :)

Other than 1 Venetoclax pill per day -- which ends today I think -- I've been done with the chemo for several days.  As a result, my counts are at rock bottom (good!) and now it's a waiting game to see when they start coming back up -- which could be as early as in a week or so.  If there are no complications, once ANC approaches 1.0, they'd release me.  Soonest?  Prob two more weeks.

Everything pointed to feeling worse in Week 2 vs Week 1, but it's the exact opposite.  Very thankful for this.

Food and Appetite

Ha.  This is an important topic to cover, but I certainly didn't plan on leading with it.  Alas... perfect timing!  My "room service" -- the food situation has gotten quite a bit better here -- just arrived.  For the first time in 2 weeks, I'm actually hungry.  Not like... ok, I'll try to eat... like.... I want a burger!  So how nice that my turkey burger just arrived... and 10 minutes early to boot.

So we've gone from lots of nausea, vomiting, feeling down, and awful diarrhea to full-on appetite and upbeat energy.  How?  Combination of things.  The chemo being done helps.  Better sleep helps -- I started taking a half dose of this sleep-aid -- Trazodone -- and it makes all the difference.  And as I briefly mentioned last time... Marinol.

Well, I think the Marinol is here to stay.  My gut and GI track is better -- not great but better -- my appetite is up.  My nausea is down.  My anxiety is down.  Is it harder to concentrate... and think... and yes, author blog posts!  But I need to focus on one thing and then one more: getting better... and getting home!

Somewhat related... I really wanted to work a bit more over these initial 4 weeks.  That's one of the reasons I resisted the Marinol... it makes me so high there's no way I'd be able to get anything done at all.  But working just isn't the right call.  If all goes well, I'll be home in 2-3 weeks, in remission, and able to ease back into work then.  For now, it's gonna be Marinol, rest, laps, and a shit-ton of playoff baseball watching for me.  Work can survive (and thrive!) without me for a while. Go #TeamVineti

So here's what I just finished eating:



It's pretty cool that you can order all the portions and items so specifically.  It's more apparent on entrees like "meatloaf".  In AML 1.0, you'd have to order the whole thing: entree with whatever side(s); and then either check a box for "smaller portion" or not.  Even the smaller portion servings were huge.  Here's an old blog post about it.  Apologies for some inappropriate content in that post if you click -- I was pissed.  Oh, looks like that was St. Marys, not UCSF. Annnnnnywhoooo....

Here, lets say you wanted the meatloaf... by default, you'd get "1" and it would be one little slice.  You can't tell this other than by the calorie count, but it's pretty apparent how it all works after a while.  Want two slabs, just increase the quantity on the Meal ordering UI like I did on the ketchup packets above.

Also, shoutout to Eric for bringing me a couple T-shirts and a boatload of Pop Tarts!  Good to see you, pal.


Right middle finger

So this continues to be weird.  Like even now, I'm avoiding using the finger when I type this. We think there's some kind of random little soft-tissue infection in the finger causing both bone/joint pain and the neuropathy.  Random shit going wrong like this is par for the course when you get this kind of chemo regimen. With no immune system, little nothing things that happen all the time and get cleaned up before you even know it, can cause major, major problems.  So I'm on some anti-biotic for it.  It's definitely better than yesterday, but changes throughout the day and night.  Heating pad made a big difference last night.  Tonight will be a big test for it.

[9:00p update while proofreading: I've been using the middle finger... it's def better than last night but I think I'm going to do the heating pad again.]

PFT WHN

Today I had a realtime PFT test which is some kind of pre-req for setting up my BMT.  I don't remember doing this test before, but according to UCSF I did during 1.0.  I don't really know how to read the results, but it looks like I did well on it.  :)



Oh, and I actually had to go to a different building -- connected via walkovers of course -- and to a lab (a couple floors up) that actually has a North view.


This is vs my room which has a... not quite as nice view.  

Shows

Been watching a few random things... can't remember if I've posted about this:
  • Finished Alice in Borderland Season 1 -- highly recommend
  • Finished Manifest (before this whole ordeal started but def worth a mention) -- psyched NetFlix picked this up and that Season 4 is going to happen. 
  • Started La Brea -- I typically love B-grade NBC/FOX shows like this (e.g. TerraForma, Revolution, Under the Dome, etc)
  • Watching Outer Banks Season 2 -- holy action, Batman!
  • Watching some random -- well, not random but the best of the best -- ST:TNG episodes
  • Watching some choice Looney Toones -- thank ya, Beeks!
  • And of course sports stuff as needed/tolerable :)
OK, this got long.  Platelets here.  Yes, I'm getting a platelet transfusion at 9:00p.

iwkia...a.

Comments

  1. Great to hear you’ve got more energy. Must be a relief! 🙌

    ReplyDelete
  2. Marinol for the win. So glad it's helping you through this. Sending more love!

    ReplyDelete
  3. Oh marinol... happy to hear its working and you're feeling better!

    ReplyDelete

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