I don't talk round corners

Tue Sep 16, 2025 - Blogging Tunes: SomaFM DroneZone

I keep saying to myself that I’m going to blog and then I keep not doing it. Why? I’m honestly just too tired. I keep waiting for that one day — maybe the day after transfusions — where I’ll feel somewhere close to where I did a month ago. Then I’ll write. Oh, and that’s if I can keep my eyes open for more than a few minutes at a time.

Alas, that day will never come. So I’m just gonna power through as much as I can since — currently, anyway — my eyes aren’t bahdding me that much and I feel like I can sit here with my lappie, a couple o’ puss, and do a combo of typing and voice-to-text.

It’s hard to describe the decline, but make no mistake, that’s what this is. Without the twice-a-week transfusions, there wouldn’t be anything to write about. My body just can’t manufacture what it needs in terms of blood. It’s more than that though. The weekend before last, on a day-before-transfusion-day — when my counts were near their lowest — I wanted to make myself an iced-mocha. There are several steps, but it’s really not that tough…. for you. For me? I had to sit down and rest for a few minutes twice during the process just to catch my breath and make sure I didn’t pass out. It was one heckuva mocha though.

Basic, normal stuff just crushes me now. This morning, when I finally made my way downstairs — yes, I can still go up and down the stairs myself, though we’re intentionally limiting the number of trips per day — I walked around the living room and the kitchen and opened 4 windows. I then immediately sat (more like flopped) down on the sofa and checked my heart rate… who new the Metronome Pro app could be so useful? 128bpm. That’s not good. Yes, I need to move around physically, but letting the heart rate get that high? Too risky.

So what does life really look like right now? What can I do? What can’t I do? I’ll try to describe as best I can.

1. Sleep. I generally sleep from about 8:00p to 9:00a — except on transfusion days where we need to get to MGH for labs by 8:00a — and then nap at least once a day. When I wake up, I don’t feel well-rested. It’s very hard to get out of bed. Sometimes this is exacerbated by a sleep aid hangover, but I’m not taking them every night.

2. Walking. I can walk around the house as needed. I walk to the car (i.e. from the house to our car port out back) and can usually (albeit slowly) walk the necessary steps to get to the Lab and the Outpatient Infusion Center at Marin Health. But I have to walk really slow. Can’t let that heart rate get up there. Remember those days when I was walking the jetty and getting 8k-10k steps in? No longer possible. I bet you can guess which were transfusion days.

   

3. Basic Self-Care. I can still shower — we’ve always had these ADA style handles/railings in the shower… now they are coming in handy — and all the basic other normal stuff, but showering takes a lot of out me. It’s usually right before bed. If it’s any other time, I’ll need a nap after. We might need to resurrect that “shower chair” I used to use post transplant #3.

4. Eating. My appetite is actually still pretty good most of the time. Some days are better than others. I’ve lost a lot of weight — some fat, some muscle — but I can’t really worry about that. Both leukemia and chemo tend to cause mouth sores which just adds another level of difficulty (and annoyance) to dealing with it all. Soft food, small bites, and not too spicy, is the general guidance. Fortunately, this past Sunday was a good day. Beeks (aka Beeker, aka Brown, aka Uncle Dave) came up from SF to watch PHI@KC with Floyd and me, and we got some yummy wings++ from Flatty. Womp womp Travis Kelce. Go Birds! Watching Eagles and RedZone with my kids has been a highlight of the past two weeks. Sometimes family time just equals sports.

Oh, and the MealTrain has been wonderful. Thanks, all.

OK, all this said, this chapter is about trying to help me be as comfortable as possible, right? So how are we doing with that? I’ll give it a C+. I mean, there are good moments, where I can go out back and nap on the patio furniture in the shade… and we have a pretty good setup in the living room with blinds and blankets over the windows (since my eyes are not getting any better esp with bright light) so I can half watch the Phils… and there’s something just so satisfying about sleeping in my own bed (with Heather and Katniss).

Heather has just been amazing with the overall caregiving: taking me to Marin Health, making up my meds, backrubs, neckrubs (and other rubs… hey now!) but there’s only so much she can do. On top of this eye craziness, I’m constantly dealing with stuff like chronic neck pain, low grade headaches, and just massive fatigue. Note: I’m seeing an eye specialist Friday so hopefully we can increase the comfort there somehow.

There’s also this internal tug-of-war between piece and anxiety. Ativan is helping with that as is meditation (and this nice Phillies run). But sometimes the reality of likely not seeing another Super Bowl (let alone not seeing Floyd graduate from high school) really hits hard and the emotions just flood in. Or even something as simple as the fact that my Phish Tribute band is playing The Ivy Room this Friday, but not only can’t I play, I’ll likely be too tired to even make an appearance. Y’all should still go, though. Josh (from The Great Divide) will do a bang up job as Phake Page and proceeds will go to LLS/BCU.

Plus, while the transfusions do make me feel better, I don’t have my PICC line anymore, so each transfusion day is a little prick for the blood draw and then a major poke for the IV for red blood and/or platelets. It’s also car rides to-and-from Marin Health and hours of lying in an uncomfortable bed. I’m not complaining about OPI (Outpatient Infusion), the ladies there are amazing. Shoutout to Sheila, Sheetal, and Bong. Sheetal calls me jaggu dada. :) Most of the time, I get my own room where they draw the curtains and make it as nice as it can be for me.

So at what point do we transition to palliative to home hospice? i.e. stop chemo, phase out the blood transfusions, etc.? We talk about this weekly with our palliative care doctor, Natalie, and every other week with (Dr.) Jerry (Lee.)

There are multiple factors at play and they change all the time. I have this milestone of wanting to be around for all of the baseball playoffs — as silly as that might seem to some of you — so that’s what we’re shooting for now. After that, we’ll just have to evaluate week by week. At some point, the leukemia will likely cause all sorts of secondary and tertiary problems, and things could go south quickly.

One fun bright spot these last couple weeks — in addition to Philly sports — I think it was George K. who commented on a Facebook post recommending Phil Collins’ autobiography audio book. I’m about 3/4 through it and it’s amazing. If you’re even 1/2 as much of a Genesis/Phil/Peter fan as I am, definitely give it a read/listen.

OK, I’m getting really tired. Need a nap. But first a quick word about visits. My brother is coming for a few days this weekend and then my longest childhood friend is visiting for a few days as well. That will likely take me up to the next chemo cycle.

That’s prob all the LD visits I can handle, but short afternoon “sits” are still possible here and there. Feel free to text. I might answer, I might not.

Go Phils! Go Birds.

Oh, and I wanted to give big props to Matt Chick. In my previous post where said that everyone had to listen to Entangled, this guy went all out.

Wellllll, thanks to our kindness and skill,
You'll have no trouble until,
You catch your breath and the nurse will present you the billlllllll.

-jg