Gold Star!

November 8, 2023

I think I get a gold star for the past couple of weeks.

Last week I completed my COBRA paperwork; did my disability claim (including a cover letter all about my illness and why I should get disability); attended a zoom training; went to north Baltimore for a cardiac test; went to Baltimore for two CT scans and a physical exam; had another bone marrow biopsy, you know, one of my favorite things to do ever; and had the mother of all blood tests where they took (and I am not making this up) more than 30 vials of blood. This week I went to Baltimore with John so that he could get all of his pre-donation testing done; I met with the radiation oncologist; and sat down with one of the nurses in the transplant unit to be educated about what to do and not to do. I’ve fielded multiple calls from the billing departments that my insurance is being denied. I patiently explain that my COBRA will kick in really soon and cover everything. Today was the pulmonary function test (surprisingly claustrophobia inducing if you haven’t had one!). John and I toured the apartment complex on the hospital campus, and David and I visited long-term stay hotels near the BWI airport. I’ve hit my move and exercise targets everyday by walking literal miles on the Johns Hopkins Hospital campus; lost and not lost. The list continues, but that’s a snapshot of what I’ve been up to lately.

An incredible bright spot is that David and I got to visit Andrew in Philadelphia last Friday/Saturday. We had a “spectacular” view from our hotel room, and just looked outside at the city and talked. Cheesesteaks were involved, but not the one with all the instagrammers. The Sixers won! We’ll pick another bagel shoppe next time. Again, we walked miles, but I was between two of my best guys. (OK safety first, have you walked around Philly lately?)

I got all my pre-transplant appointments set, passed most of the tests, and I’m ready to go. I’m a lucky one that qualifies. We’ve met so many on this path that were not eligible and I was in that space for months. This is everything I wanted and prayed for since my diagnosis. I'm one of the lucky ones.

As with all the misdirects in my blogging, you may have already realized this really isn’t about what I have been doing since you last heard from me. It’s about how much I don’t want to do any of the carefully enumerated activities listed above (except the Philadelphia trip, I do want to do that). I don’t want to do any of this. I don’t want John to have to get belly injections; I don’t want him to need a red sharps container; I don’t want the belly injections they will give me; I don’t want to pick someplace to live based on least bad option; I don’t want to be a champion of knowing the Hopkins map or garage; I don’t want to remember to get gas so when I leave at 6:30 in the morning I don’t need to stop first; I don’t want to wait for test results just to find out if this worked. This list continues, but I don’t want to write about more. There is a limit on semi-colons per blog. I get through the days by focusing on the next appointment the hospital app shows. Tonight, I need to get my bag ready for tomorrow’s early appointments and top off the emergency pretzels. (I get hangry, OK? These are long days in the hospital already.)

What I realize when I don’t just focus on what I am doing next, the bone marrow transplant becomes super real. I must really have leukemia; only people who have leukemia or some other serious disease get a bone marrow transplant. You may be surprised, but I don’t feel like someone with leukemia or someone who needs a bone marrow transplant. I feel like I’m sort of a normal person with some medical things going on. I raked leaves over the weekend! I thought about running (and quickly decided that wasn’t going to happen). I make jokes about pirates – and the fact that the pirate/Halloween decorations are still up! (What makes you a pirate? How did you get into that line of work?) I don’t understand this illness thing, I don’t ever want to understand this illness thing.

I don’t need a gold star, I probably just need a hug.

The super helpful chart from the nurses show that my treatment starts in earnest next week. Four days of Chemo start November 22, radiation November 27, and the transplant itself is November 28 – Day Zero. I’m required to stay in Baltimore until at least Day 60 and will be “released” when my blood counts recover.

[Note this was written last Wednesday, I’ll do another quick update shortly.]

[Picture with Andrew in Philadelphia waiting for the aforementioned cheesesteak.]