Day 59

Chris asked me today if any aspect of this experience is making me uncomfortable. I honestly know what he was asking, but all I could think was I can't believe that I may die because I can't receive treatment. That was the one thought that came to mind and maybe it's strange that I could associate that thought with being "uncomfortable."

At the onset of this entire affair, I never once thought that I'd be racing around a building in a wheelchair because I was too weak, or too tired, or my joints hurt too much to walk. During my first week here I had to start using a wheelchair because I was too tired and nauseated to walk unassisted. I had no idea that you could lose so much muscle tone in one week. It literally took me 15 minutes to walk 100 feet from the end of the hall to our temporary apartment. I can't imagine how many miles I walked in a regular work day, or the number of times I had to climb a flight of stairs. I can barely make it down a single flight without stopping and leaning on the banister every few seconds. Sometimes I catch myself shuffling instead of walking and I have to make a point of picking one foot up and placing it in front of the other. I never thought I'd have to make the conscious effort to walk.

I never thought that I'd be taking a bus to the hospital almost every day to receive treatment. We're lucky in that the complex we're living at charters a bus to MDAnderson Monday through Friday. You purchase tokens and are guaranteed a ride from 6:30 am until 7:30 pm every half hour. You start to recognize other patients and they recognize you in turn. I never thought that I'd be making cancer small talk with other people on a bus. It's just one of those random things that never occurs to you.

When Chris and I first started going to the Leukemia clinic, we'd notice certain people. I'm sure we were also noticed. We'd see the same people every week. They'd be sitting in the exact same spot in the waiting room, like a high school cafeteria. We started to learn the people who had been coming for a while and who were new like us. I start to get worried when I don't see someone for a while. You start to take a certain comfort in seeing familiar faces and knowing that these people are moving along just like you. There are a few missing faces that we wonder about, but then there are a few that have moved on to BMTs and are probably in isolation. I've started to notice newer patients observing us like we used to do to other patients. I wonder if I should just walk up and talk to them, or if they'd rather be left alone. On most days I'm not feeling up to a full conversation and it can be a little difficult to understand me when I'm wearing a mask.

I never thought I'd have to rely on a piece of engineered paper to protect me from the microbes floating free in the air. Chris is militant about me wearing a mask when I'm in public. I absolutely do not mind. I find it hard to believe that more patients don't wear their masks in public. Things that I could fight off could kill me now. In the past, if I got a tickle in my throat, I'd go in and get an antibiotic and that would be the end of it. Now I have to take antibiotics and antivirals just in case I might contract something. I can't walk around in bare feet just in case I step on something. It's disturbing to think that I used to check the mail in bare feet or flip flops.

I can't believe that some of my conversations start with, "Do you honestly think the insurance company thinks implanting my ovaries in my arm isn't experimental?" There are about a thousand medical procedures that have been lobbed around since I started receiving treatment that I had no idea existed. I've learned the difference between "standard of care" and "experimental". Standard of care is receiving a proven treatment. Experimental is receiving treatment that hasn't been extensively published. Organ transplants are now standard of care in most instances. This wasn't the case ten years ago. Maybe I'm making that up, or I'm just hoping really hard.

On a happier note, Dixie is feeling better. I won't be reassured until we know what's going on, but I'm encouraged that she's eating and her cough doesn't sound quite so horrible. We don't have any appointments on Monday and my fingers are crossed that we don't have to go to the ER for a transfusion. I'm pretty sure that I'll be going into the hospital Tuesday night for chemo round four. We'll keep everyone posted.