Thank you to everyone who came out to THE BIG CLIMB on 4/30/2022 at Kezar Stadium! It was a a great event. The Team Greene page and my personal fundraising page are still accepting donations if you'd like to contribute.




One Foot On The Brake and One On The Gas

Monday January 17, 2022 - Day +32

Blogging Tunes: SomaFM Groove Salad

We're just over a month after transplant... so what's going on?  In this post, I'll cover my energy level, provide a health update, report on sleep challenges, talk about food/appetite situation, and discuss my state of mind throughout.  In addition, there's a special surprise at the end, but only for some of you.  Oh, and thank you Niners for beating the Cowboys.  Seeing the Cowboys lose like that really takes the sting out of the Eagles loss.  

My energy level has been pretty consistent over the past couple weeks... and it's consistently low.  Just plain low.  Any kind of exertion -- be it physical or mental -- is very tiring.  Still, I'm walking outside just about every day.  Though after the walk I need to rest (or just sit) for 30-60 minutes.

Today, Heather and I got out reasonably early and headed to the Loch Lomond jetty.  I almost made it the whole way, but decided to rest on a bench for 5 mins -- while Heather walked down to the end and back -- so I'd have enough energy to walk back.  Here's what it looked like from where I was sitting:

View of the San Rafael / Richmond Bridge from the Loch Lomond Marina

The walk back was tiring but I made it.  Probably about 1.75 miles total.  It's hard to describe the mixed emotions I feel during a walk like this.  I'm grateful to be alive, to have the privilege to get the medical care I receive(d), and to be able to take time off from work to focus on my health and recovery.  And I'm grateful that this beautiful walk is practically in our backyard.  But it's hard to deal with the reality that a short, slow, lazy walk wrecks me like I'm some 85-year-old.  I see people flying down the street on their road bikes and wonder if I'll ever be able to do that again.  So yeah, lots of ups and downs there.

In addition to walks, I managed to get on the Peloton a couple days ago.  It was the first time since I've been home.  I did a 20 minute scenic ride and my output was 80KJ.  That was about 15 minutes in Zone 1 and 5 minutes in Zone 2.  Like the walk, it felt good to do it, but was also a little demoralizing that a few minutes in Zone 2 made me feel like I was gonna pass out.  

Oh, I've also been doing a little bit of light arms with 3-pounders -- not Peloton classes, just on my own.  I can only do about 1/4 of the reps I was doing pre AML 2.0, but a little something is better than nothing.

I know, I know... with all of this stuff I need to take it one day at a time. My energy will return, it's just going to take awhile.  How long?  That's based on two big factors: Tacrolimus and red blood counts.  So let's move on to the health update.

Since the Neupogen shot on 12/30 (that artificially jump started my counts) we can see many of the counts trying to find their new baseline.


Dr. Damon said that the flip-flopping WBC, RBC, ANC (Neutrophil), and Hemoglobin over the past four appointments isn't anything to worry about.  In fact, it's the Platelet Count which tells the best story about how the engraftment -- Martin's cells settling into my bone marrow and starting to build the new immune system -- is going.  We just need a couple more data points to trend all this stuff.  My appointments are usually Mon/Thu, but this week they are Tue/Fri, so we'll how things are looking tomorrow.

So how does all of this relate to my energy level?  Here are the main factors:

  1. The higher my RBC, the more energy I'll have.  The "L" and "H" next to the counts means low/high.  Normal range for RBC is 4.4 - 5.9, so we're still quite low there.
  2. How much Tacrolimus I'm taking.  Tacrolimus suppresses the new immune system so it doesn't come online too quickly and start attacking things it should.  The more Tac you take the more tired you are.  Plain and simple.  Ultimately, we need to get it to "zero."  I think this took 12-15 months for AML 1.0 -- I'd need to look back at my old blog entries to be sure.  Since the 2.0 transplant, I've been taking 2mg per day.  But as of last appointment, Dr. Damon reduced the dosage to 1.75mg per day.  To be technically correct, I'm actually doing 2mg one day followed by 1.5mg the next, since we only have 0.5mg and 1.0mg capsules.  But this first "Tacolimus taper" is significant.  It's hard to tell, but I think both "1.0mg + 0.5mg" days have been slightly higher energy that the "1.0mg x 2" days.  Hopefully in another week he'll reduce to 1.5mg every day.
Another positive is that as of last Friday -- touch wood -- I'm done with the IV Magnesium.  This is so huge as I don't have to be tethered to a pole for a few hours a day.  As long as the Mag (and the rest of the) counts are good tomorrow and Friday, it likely means they can remove my Hickman line soon.  These are all small but important steps in the recovery process.

That said, I'm still taking a ridiculous amount of meds.  Mostly to make up for what the Tacrolimus is preventing my immune system from doing.  Here's what my 7x4 pill box looks like:


OK, next topic... sleep.  My sleep has been really inconsistent.  The are multiple factors: do I take any melatonin or Ativan?  Do the cats (or does something else) wake me up?  When I inevitably wake up, is my mind calm enough so I can get back to sleep quickly?  Some nights I'm up for hours, other nights it's not so bad.  On the nights where I'm up a lot, the next day is really tough.  I'm consistently in bed by about 8:45p and my goal is to sleep through til 7:00a.  When I'm able to come close to that, I'm much higher functioning the next day.

Onto food.  My appetite (and ability to eat consistently) is continuing to improve, albeit slowly.  My taste buds are still a bit off and some days I'll realize that 8-9 hours have passed and I haven't eaten anything, but it's much better than when I was on heavy chemo and getting <= 800 calories a day.  My GI system is still a bit challenged, but again, better than pre-transplant.  More on that later.

Some quick shout-outs... thanks to Jen Conde for making (and Kevin for bringing over) some amazing carrot/ginger soup and quinoa salad!


Also, YASO (yet another shout out) to Troy for sending one more installment of Philly love.  It couldn't save the Iggles from laying an egg, but it sure made the weekend better.  Just wet the pretzels, add the salt, and re-bake 'em for 5 minutes.  Just like South Philly!


That takes us to the surprise section. I honestly thought I'd never author this, but my good ol' buddy Rob can be pretty persuasive.  Please stop here if you're not interested in (literally) hearing details of a problematic GI system.

But, if you're like me (and Rob) and find humor in flatulence, by all means, keep reading.  Here's a pic of Rob, Lauren -- his wife, and my lifelong friend... like since we were babies -- and me from their wedding in May 1996.


Ok, so Rob is a big time farter.  Like, if he really wanted to, he could have gone on Howard back in the day and competed with Will the Farter, but alas, he tends to keep a low profile.  So when I told him how gassy I was from all the weird GI tract side effects of the chemo, etc., he said that I needed to share this aspect of my journey with my blog followers.  Call me a kid at heart, but I've always thought that farts were funny.  And when you're recovering from your second bout with AML, a little humor goes a long way, right?  So, without further ado, here's a compilation of just some of the gaseous insanity that has occurred over the last month+.  View at your own risk and enjoy.  


iwkia...a

Comments

  1. 1) I’m all about fart humor so appreciated the video (gross!); 2) what did, however, make me cringe, was the thought of wet South Philly pretzels (I was raised on those.); and 3) any thought about trying trazodone again for sleep, even a half tab? Works like a charm for me when I really need to not wake up. Xoxoxoxoxo

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  2. Ha ha! Loved the video, JG. You should send to Tesla to add to their fart app. ;-). Big question is, are they smelly??’

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  3. I’m super happy about the e terrain lent of farts. And I understand your frustration of weakness but yes, it will improve. Your mind certainly is still very much intact! So much medical knowledge! I’ll be home tomorrow so can help with drives, meals, etc. Keri truckin!

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  4. Thank you for taking the time to update and inform your friends and followers. Love you and look forward to seeing you!

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  5. I am all about being a kid at heart! So fart away:) Love you and remember to cheer on Green Bay this weekend. GO PACK!

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  6. Captain! We have detected a gaseous anomaly... Well, in this case, more of a uniformity.

    Never thought I'd say this, but it's good to know that swampass persists.

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