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:
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:
- 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.
- 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.