And Then I Start to Steam

Fri Mar 29 2024
AML 3.0 treatment - Day 11

This is a venting post. Plain and simple. In my last entry I shared a quote on Gratefulness, and I'll tell you... yesterday I failed miserably at practicing it.

Here's the thing when you're sick: you can try to make a plan... you can think you have a plan, but you don't. Because one little thing can happen and then everything spirals to shit.

So yesterday was supposed to be this relatively easy day. Labs at 9:30a and then nothing for the rest of the day. "Labs" essentially means a blood draw. Takes about 30 seconds. So my "plan" was to do the blood draw and then take a slow (but strenuous -- for me) walk up to Easton Stadium. Why visit that field? Well, I'd visited Jackie Robinson Field the day before and this is another stadium, so I just wanted to see what it was, and to see how I felt walking a moderate grade... turns out Jackie Robinson is the Men's Baseball field and Easton is the Women's Softball field. But more on all this later.

I figured if the walk tired me out, I could just chill in the afternoon, watch baseball and hoops, and just rest/sleep if I needed to. When I went in for the blood draw, I had a feeling things might go sideways, I just had no idea how sideways. I guess the Phils' being rained out should have foreshadowed it all. The phlebotomist, who is excellent by the way, only had two tubes set to fill... my labs are usually 7 or 8 tubes. So I asked him, "Why only two tubes? That can't be right." He looked at the order and confirmed that it was only 2 tubes today. Rut roh. So, ok, whatever... he doesn't know, he just draws the blood.

* * * an hour later * * *

I'm sitting somewhere on the side of W Sunset Blvd taking a little break, ultimately making my way to Easton stadium when my phone rings with a UCLA caller ID. Why was I sitting? Well, my counts are so low that if I'm walking up any kind of a hill, my heart-rate sky-rockets. I can only walk for about 5 or 10 minutes and then I need to sit or I'll probably pass out. Probably not the best idea to be walking on a busy road by myself. Annnyhoooo... I answer like I always do: "Hi UCLA."

It was Amy -- my Nurse Practitioner. Short version: the labs were incomplete, so I need to go back to the clinic to re-do them and I might also need a transfusion... but hopefully that can wait until tomorrow... she'll call me back with details. I should have turned around right then, but I was stubborn. I'd gone this far and I wanted to get to the top of the hill and see this field. So I did.

All that work for this:

Turns out I could have taken a better route on a frontage road on campus instead of the main road outside of campus, but I couldn't really tell that from the walking directions on Apple Maps.

Anyway, I started walking back down through campus (which is amazing by the way -- Floyd are you reading this? Can't wait for you to see this place -- more pics below) when Amy calls back. I need both blood and platelets soon. No appointments for that tomorrow so gotta do it today. So Labs at 12:45p and three hours of transfusions at 1:00p. Sigh. Oh well, at least I should be back in time to watch hoops.

So I walked back down through campus, stopped at my room to change -- SPF hoodie not great for transfusions -- and made my way to clinic. Here are a couple campus shots.

Just walking up the stairs to take that last shot crushed me. No more climbs until my counts come back. Campus is empty -- must be Spring Break here.

So now I'm heading back to clinic... sure the Phils were rained out but I was representing:

... and here's where it gets fun. I show up right around 12:40p. Labs are done by 12:50p. I'm back in the waiting area to be called for the 1:00p transfusion. Around 1:15p I ask the guy at the desk if he knows what's up (since they usually call you pretty close to your appointment time.) Turns out my transfusion appointment was moved to 3:00p.

Glad I asked... otherwise, I would have just been sitting there waiting, and waiting... so I went outside and sat for a bit, watched half an episode of Reacher, and went back in around 2:30p. Wound up being there until close to 6:00p. Met a nice couple who were UNC fans in the infusion center. She was being treated with experimental chemo since she's not responding well to normal treatment for her breast cancer. Have I mentioned how much I fucking hate cancer? I adjusted my laptop so they could see the Arizona game.

On top of everything else, yesterday was just plain disastrous for me sports-wise. Travis and I both got knocked out of our survivor pool, bad beats on other college hoops bets, both of kids' baseball teams lost (in horrible fashion), and the Phillies were rained out. At least the Giants lost their opener. Minuscule consolation.

Sooooo.... this would-be-full-afternoon-off turned into 5 hours in clinic with pricks and pokes and IVs and just an all-around death vibe. It's just so hard to be in the transfusion center sometimes.

Oh... why did my appointment move from 1:00p to 3:00p you ask? Well, remember that 9:30a lab snafu? Well, they didn't do a "type and screen" which is required for any kind of transfusion, and that takes 1.5 hours to complete, so they just moved my appointment back. Of course "type and screen"s are valid for 3 days, and I definitely had one within that time window, but apparently they didn't check for that, so they just pushed it back... yeah. Awesome. 

The cherry on top?  I found out that there are no rooms available at any of the UCLA lodging places on Friday April 12 because of Bruin Day. So not only do I have to find myself a place to stay that (and maybe the next) night, but 4/12 is smack dab in the middle of Heather and Floyd's stay down here. As of a few days ago, I thought I was all set for accommodations and I would simply book another room for them wherever I was staying. No dice. Also, I don't even know if my current stay (which originally was slated to end tomorrow) has been extended.

I'm not getting much assistance solving this, so after I post this, I'm going to talk to the front desk about my immediate comms and scope out a couple places recommended by my trial coordinator for mid-April. My current thought is to just find a place for us all to stay those 4 nights (paying out of pocket) and then just return to a UCLA property after Heather and Floyd head back home. I haven't started my car since I've been down here, so I probably should take it for a spin anyway.

I'll keep y'all posted.

Lastly, here are a couple pics from my Wednesday long walk to Jackie Robinson Field. It was closed up but I was able to get a good pic through a fence. Hopefully I'll be able to see a game there at some point. Need blood, platelets, and herb? Looks like this is your one-stop-shop:

iwkiaaaa.