Part 4: Mechanical Pencils and Stevie Wonder

After the whole cherry pie incident, along with the countless other setbacks I had already experienced, you’d think I’d have “paid my dues” so to speak.

Think again.

I recovered from the gastrointestinal bleed, surviving possibly the most dangerous event since my diagnoses. I never thought I’d be so thankful to move from one floor of a hospital to another. I was back on 8A– my home away from home! With my familiar nurses and less-terrifying rooms. We had slight hopes of coming back to the floor and receiving a larger room (the one I had was incredibly small! It got the job done just well, but some extra space wouldn’t have been unappreciated.) Funny enough, when we came back to the Homefront we were placed in the exact same room. Which, I was pretty okay with. It was familiar, and had become a standard in my new concept of “normal”. Things were going pretty smoothly for a while (a couple days, a week? Who knows. But there was a period of time where things were good, and for that I was thankful. When the shit began to hit the fan again, it was because my next bone marrow biopsy showed that I still had leukemia cells. The first round of chemo had been unsuccessful. Since my previous bone marrow biopsy had gone so catastrophically terrible, we had the SWAT team attend to me for my procedures requiring sedation. The biopsy was rough again, initially at least. One of the doctors or fellows or whatever suggested I try taking a dilauded and an Ativan instead of using the sedation. I wrestled with the idea for a while, and finally decided I would give it a try. I wasn’t very positive about the whole situation, but I wanted to get it over with as soon as possible, and we would have had to have waited until the following day to have SWAT help us out. Well, as I should have expected, this biopsy was awful, but for different reasons. It still was painful, but less so than the initial one. They were unable to retrieve a sample, so I had to wait until the following day anyway to have them try again– this time with sedation. Oh! Actually I can’t believe I forgot this, but after my first biopsy they asked if I wanted to see the samples. They said that it was the size of a pencil lead, so I pictured the tip of a standard #2 pencil when the sharpener fucks it up and a chunk of lead falls out from the wood surrounding it. Nope. Nopenopenope. What they meant when they said “pencil lead” was actually like an entire piece of 0.5 MECHANICAL pencil lead. So, that was pretty great. It was actually the second time in my life I had managed to see part of my bones.

Intermission– I am currently in downtown Saline at Carrigan’s Cafe writing this entry as I enjoy one of my last days of pre-transplant freedom. I mentioned to mom what I was writing about, and apparently THE DUDE DROPPED MY BONE MARROW SAMPLE ON THE DAMN FLOOR!!! What. The. Fuck. I went through all that internal strife to do it without SWAT, and HE DROPPED MY FUCKIN BONE ON THE FLOOR!  Oh man, I’m a little bitter now. Fuckin’ fuck! FUCK! Mom said that she and dad noticed the oops at the same time, and that the room just stopped and everything stood still. Then he was like “well, we should probably have what’s-her-face come and do it, she’s the best.” But what he really meant what “oh fuck. Maybe I should have had what’s-her-face do it the first time around.” Not even “whoops sorry guys, just put your child through some pretty miserable shit and I FUCKED UP.” Actually, probably better that he didn’t say that. Subconsciously I probably would have heard and might have tracked him down and… Well, anyway. A pro of this experience? I was told I have strong bones. Might be shitty cause they gave me The Cancer, but at least they’re strong and osteoporosis isn’t in my immediate future! (I’ll take what I can get these days!)

Alright, back to the tale. So the next day SWAT came in and gave me the good stuff. I always enjoy watching my surroundings, trying to get myself to remember when the meds hit. They’ll tell me, “here comes the first dose…” Nothing. “Here comes the second dose…” Nothing. “Here comes the third dose…” Maybe things start to feel like a dream? “Here comes the fourth dose…” And then I wake up and it’s all over. In like five seconds. But god damn that is some of the best sleep you will ever get in your life. Totally get why people get addicted. It’s like… You die, go to heaven, shoot the shit with some good souls, have a few brews, and then before you know it you’re back, feeling like a million bucks. But I digress. When I came to after this particular biopsy, a doc was standing by my feet and asked how I felt. Completely serious, I looked at her and asked, “have you ever seen ‘How I Met Your Mother’?”… I don’t know what she said, because as soon as I asked, I got this far-away feeling like I was reminiscing on some good ol days and I stared dreamily out the window. Now, what was typically a view of Ann Arbor (go figure!), had turned into the New York skyline, complete with the bank that Ted Mosby designed. As I looked at the building, I raised my arm and pointed at this phantom scene, stating, “see that? Ted Mosby designed that building.” I turned back to look at the doc, and noticed that everyone in the room was looking at me, completely perplexed and possibly a little alarmed. This knocked me out of my first-ever hallucination as the sleepy smile fell from my face and I stated, “I’m not making any sense, am I?” I got a silent chorus of shaking heads in response. That was a pretty great time, though. I always thought if something like that happened I would spill some secret or something, but no, I just talk about HIMYM. I guess that works out alright.

Well, after this remarkable experience, things were pretty mellow for a while. Well, as mellow as it could be, being in such a situation. I began my next round of chemo (Oh, really quick, when I was in the ICU I was 8 liters ahead, meaning I had had 8 more liters of fluid pumped into me than I had had out. Remember this. It will be critical for a whole other part of this tale which I will revisit eventually. Sorry for the interjection, just remembering things here and there!). So chemo itself went great, and all things went better in the sense that hey, I wasn’t in the ICU. So cheers to that! But of course, it wouldn’t be any “fun” without some setbacks, right? Sure. At one point, my eyes started to get incredibly dry. It felt like I had sand lodged in those gelatinous marbles, which I’m sure many of you have experienced at least something similar to that at at least one point in your life. Well, things continued to get worse for those poor jelly-orbs. My eyes watered constantly, making it appear that I was sobbing without the frown. Or snot. So at least I had that going for me. For THREE STINKING DAYS I was “blind”. My eyes were shut 24/7, well, almost. Minus the few times I attempted to open them and try to see through the stinging blur. Those attempts were short lived. The ophthalmologist came in, maybe at day 1.5? And determined that I was producing low-quality tears (who knew that there was such a thing?! Not I!) so I was given drops and a Vaseline-like gel to smear into my eyes before bed. It helped, not immediately, but nothing but the onset of my leukemia and hospital stay had really been “immediate” during this experience. Then one night, when Tim came to stay with me (it was always so wonderful to have him stay the night. Visiting was awesome, too, but hanging out and being able to have him spend the night gave me a little sense of “normal” which I thrived on. Not to mention his company and support has played a major role during this whole thing. Alright, enough sappy-ness!) it must have been around midnight, (time means nothing when you’re in the hospital. And it’s fuckin terrible. No one has any respect for your sleep, or anything!) and we were still awake and hanging out, even though I was Stevie Wonder-ing it up, and I decided to try and open my eyes again. And this time, when I did, I could see! And the burning was much less than it had been before. I was so excited, I got Tim to assist me, and we went for a walk around the unit several times. I was so excited to be able to see! It never crossed my mind that hey, maybe I’ll never be able to see again. But looking back, I guess that could have happened. But a lot of things could have happened, and a lot of things DID happen.

Once the blindness dissipated entirely, things were pretty calm for a little while longer. However, eventually I began spiking fevers (which wasn’t uncommon, since my immune system was still shitty) and every time a fever occurred, cultures would be drawn to make sure that there wasn’t an infection in the blood. The cultures would be drawn from the PICC line, and also peripherally to try and determine where it was coming from. So, when my fevers started popping up again, cultures were drawn. I didn’t think much of it, since I’d already been through some shit I figured that hey, maybe something would go according to plan. Well, in this instance that wasn’t the case.

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