I couldn’t take Propofol today. Propofol is an anesthesia that lets you wake up easy, with no misty haze and with a good feeling inside. However, the anesthesiologist said that there was a slim chance that Propofol could give pancreatitis. I said I had bad experiences with slim chances.

So now I’m in a misty haze and feeling dazed and confused. Oh well.

–Reid.

Today I get another dose of Vincristine, a chemo med that always makes me feel sick and sometimes makes me feel really sick.

I’m also having two procedures done at once. The docs are drawing marrow from my hip (or maybe my butt this time–I’ve lost 70 pounds) to check the status of the cancer. The other procedure is a bronchial endoscopy, where the docs look at the inside of my lungs with a tube camera to make sure the lungs are healthy.

Last night’s test with the bipap machine (I wore it to bed instead of my normal trach vent) went well in that I could breathe room air (no oxygen added) and I wore it all night. I hated it, but am told (by multiple sources) that once people get used to it, they love it.

The resident told me that because of my good performance, I can probably leave early next week, because they will have no reason to keep me and the insurance company will be breathing down their necks.

My trach was capped all day yesterday. I stayed between 94% O2 and 98% all day. I climbed a flight of stairs between two floors in the morning, and clocked in at 97%. My dad and I played pool and shot hoops last night. It was our first time in the Teen Lounge. It was like another work out for me; 96%.

I made brownies yesterday for OT and plan to eat them today. All of them.

Unless you’re nice.

–Reid.

Yesterday I spent half the day trach-less. Today I’m going to spend the whole day capped without a trach (I’ll be breathing on my own all day). My trach was downsized first thing this morning, so this has a feeling of permanence.

I’m going to use a BI-PAP for my nap this afternoon, and Cloy wants me to use it for bed tonight. I’m scared, but excited because it really gives me a feeling of leaving so soon. It’s nice to finally feel this way.

Looking at next Wednesday as the day I go home. Awesome.

–Reid.

I finally got to move to the big room at the end of the hall. It’s huge. I’d say “too bad I’ll only be here for a week to experience it,” but I don’t have it in me. I’m very ready to be gone. One more week.

I finally watched Juno. The cast was pretty damn amazing.

I’m having a marrow draw on Wednesday. My parents are planning on going out to the house first with my therapists to figure out what changes need to be made to the house for it to be more accessible.

I’m about to try a machine that will let me get decanulated (de-trached) within a few days. It’s called BI-PAP–it fights sleep disorders. It turns out I have a sleep disorder.

–Reid.

I’ll explain last week at some point, but suffice it to say, it’s hard to write just what I want to say.

Had a “Care Conference” today to discuss when I’m going home. Sounds like about two weeks. Sounds like I can go to Rachel’s graduation regardless.

Spoke to Matt and the other Machines on the phone last night. Damn I miss you guys in NYC.

Danny and Kadra, who are here every single night, are going on vacation tomorrow. I’m going to miss them.

Spoken to Amy every day this week. Been missing her since before she left two weeks ago.

–Reid.

Hey, just wanted to say I’m okay. I’ve had a rough few weeks, but I I’m back. I got to see Amy about a month ago. When trying to contact me, email is better than the phone. More later.

–Reid.

(I couldn’t sleep, and I felt like writing. I didn’t want to write about cancer, so I wrote this.)

I bet most people don’t consider how many Ks they have in their breakfast cereal. And if they do happen to take note of the Ks in their Alpha-Bits breakfast cereal, they probably don’t care.

I care. Someone is systematically taking my Ks away. Here I am, a normal adult male, eating my Marshmallow Alpha-Bits breakfast cereal and there are no Ks. I looked through the entire box. So I did what any rational person would do: I bought all the Alpha-Bits at my local Stop ‘n Save, and just to be thorough, all the cans of
Alphabet Soup too. So far: nothing.

I have not finished my breakfast cereals or cans of soup, but I am positive I will find no Ks. I am convinced there is a conspiracy against me. When I first sat down to type, my letter K key was gone. I looked all over the keyboard; above B, next to H, between T and U… but of course it wasn’t there. So I had to borrow one of Amy’s many K’s (she has a king’s ransom in Ks) to type this. I don’t know if this is an isolated occurrence, happening only to me, or if there are others out there losing their Ks or even their Rs, their Ps, or their Fs.

Whatever the case, watch your letters! You never know when an Alpha-Bandit may strike!

Damn, now I forgot what I was going to write.

Last night, Danny, Kadre, my dad, and I were playing Scrabble. As my nurse was injecting my painkiller, my dad picked his letters and for the first time I can remember, he showed them to me. They spelled out:

DILAUDID

The name of my painkiller.

–Reid.

I took a shower this morning (which I hate) because Amy is coming in.

While I was drying off, Amy arrived! She is now busy making my MacBook capable of running Windows and being a whirling dervish.

–Reid.

I was on C-PAP again today, as I will be all weekend.

First thing in the morning, we made it down to the hospital gym. It was empty, which seemed to reinforce my parents’ view that the gym should be open to family and staff (this was an issue because the ICU I was in was right accross from this gym).

Anyway, I worked out! I did two sets of five minutes on a recumbent stair-stepper. It’s a machine that makes you kick and punch at the same time, all from the sitting position. It was great.

In the afternoon, Cloy decided we deserved a reward, so we went for a stroll outside. It was in the 60 degree range. It’s supposed to snow this weekend. Awesome.

During our stroll, my mom suddenly called for us to stop. I wasn’t hooked to the oxygen tank. I must have been unhooked for at least 30 seconds and didn’t notice. I’m feeling good (though still a bit timid) about the room air breathing contest.

My dad and I watched Borat tonight. It reinforced his decision to have shaved his mustache.