One kind of freedom

I've been taken off my IV machine. I can't explain what it feels like after being tethered to it for an entire month. It's going to take a long time to get used to. But omg I feel so freeeee! I keep trying to adjust/move around wires every time I get up and then I'm so pleasantly surprised when I realize I don't have to. It feels great. It feels AMAZING. I can't find the words to describe it.

Earlier this afternoon Alex was here (before they took me off the IV machine) and he took this picture of me pretending to kick it. What perfect timing that turned out to be, since I can now use this as a celebratory picture! :P

The bathroom feels SO much bigger without this stupid machine taking up most of the space. Just the act of going to the bathroom is sooooo much easier without having to drag a stupid machine with me each time.
Moving around my room is a DREAM.

Speaking of dreams, sleeping tonight should be interesting without that damn machine. Ah, dreams. That's an entry for another time. That'd be a long entry to write. The crazy-ass dreams I've had since I've been in here....wow! Although I haven't had any since the doctor switched my sleeping pills, and this makes me sad.

Biopsy time!

I'm finally feeling a LOT better physically. The fevers, the mouth sores, the dizzyness, the zoning out...they're all gone. I feel way better today. Except for the headaches and the pain in my back from the bone marrow extraction yesterday morning, though dilaudid helps take care of that.

Right, the bone marrow extraction. So that was done yesterday morning and they gave me ambien, which they told me to put under my tongue so that it would dissolve instantly. It did, which was really weird and tasted awful. They then gave me a shot of morphine, so I've now had all three opiates that I'm offered here as an AML patient in this hospital (codeine, dilaudid, and morphine). The extraction was done differently than last time, administered by different doctors who gave me different drugs. What pissed me off a lot was that I lay super, SUPER still, but every once in awhile, the doc would hit a part of bone that would make my body jerk forward--not because I wanted it to, but as a total reflex. And he kept reminded me not to move, to which I kept replying I couldn't help it, it was a reflex. Like a hammer hitting a knee. At one point he finally said, "Maybe we should just give you another shot of morph--" "YES!" I didn't give him a chance to finish his sentence and everyone in the room laughed. I got my second shot of morphine not even 2 minutes later and damn it felt good once it kicked it. But getting that shit injected into you? HOLY HELL. When the nurse was injecting it, she said, "it's going to burn, OK?" and I kind of scoffed, I was like, "Oh, this is nothing," to which she replied, "...it's not finished yet." She took the needle out and I was like, "Oh, that wasn't so ba--aahhhHHHH OOOOOMG!", it felt like little sunburns in my veins! But I was laughing too, from being so cocky.
Anyway, the bone marrow extraction sucked (HAHA, pun not intended), actually I asked to see what my bone marrow looked like as Mike was here for the first one and he said it looked like mangled noodles, but I couldn't see as I was face down on the bed for that one. So they showed it to me and you know what it looked like? A little line. A straight little line. So boring! Oh well.

Anyway, they're gonna biopsy the shit outta that thing and give me the results on Tuesday. And so far ALL the doctors seem SUPER positive about it. They all come to see me all excited, saying, "Your white blood cells, they're back! You're doing good, you're looking good, eh? We wanna send you home next week!" And I'm just like "....well, assuming the results of the biopsy are good, right?" To which they always just say, "hmm, yeah!"
Do they know something I don't know? Why are they so super optimistic? They must have a reason to be; they've been doing this for awhile, they know what they're doing. Ahhh, I don't want them to get my hopes up for nothing! What do they know? In the words of the glorious Elaine Benes from Seinfeld, tell me! Telllll meeeeeee!!!!

This is what they call a catch-22, right?

Oh FFS, my doctor just spent 30 minutes listing all the horrible, horrible ways a transplant can kill me and how the first year post-transplant has a mortality rate of 25%. And, during that time the leukemia has a 20% chance of returning. And, I found out my sister's NOT a match. And, if I don't get the transplant, I'm very likely to die within the next year or two. And, lots of other fun info. Upon my learning this, a perky woman came into my room asking if she could perform reiki on me and it took ALL I HAD to not tell her to FUCK RIGHT OFF. REIKI. ARE YOU FUCKING KIDDING ME. Where's the apothecary in this damn place?! 

Mortality

ARGHHHHH FML. I've learned it's not the best idea to read about other people's leukemia battles, but sometimes they're shoved in my face without my asking (like on TV, etc) and the results are often the same: people MY AGE (or younger) who all die within a year or 2. FUCK THAT. Fuuuuck that shit.  I'm not posting this for sympathetic comments or false hope, I just had to get this off my chest as if I don't cool down soon I'm going to lose my fucking temper and trash this room. I am so angry, so upset and angry I can't quite find the words to express it. I know some people survive, but I've read about WAY more lost battles than success stories, and it fucking sucks. I've read so many other people's blogs and Facebook pages where their friends are all like, "yeaaah you can do this!" and they're like "Fuck yes I can!" and then they even get better...only to have a relapse and die a year later.

I don't like these odds. Some days I feel more positive than others but something I saw mentioned on TV tonight during a hockey game about a 29-year-old who lost her battle with leukemia...I don't know, it was kind of like the last straw, the one that really made me fear for my own mortality. But I feel anger and frustration moreso than fear. It's hard to explain. I don't want to fucking die!

Oh, and today already sucked as I spent it with a fucking fever that went up and down, blood cultures, and more x-rays. Yay.

Seriously? FML.

Wheeeeeeeeelchair! :P

I got a new mouth ulcer last week and FUCK does it hurt. Today the pain was just unbearable but as I'm neutropenic, the nurses can't give me anything except painkillers. I got a shot of dilaudid and it worked for about twenty minutes, after that it hurt like hell to talk so I just mimed and whispered and wrote on paper. I was high as all hell though (well, this IS dilaudid we're talking about) and I had to go get an X-ray, so the transport guy had to bring me via wheelchair down to the 4th floor to the X-ray ward and let me tell you, getting pushed around on a wheelchair while strung out on dilaudid is a LOT of fun. You know those dreams where it feels like you're flying? It was kind of like that. Good times!

Well, when I came back from my X-ray my mouth was still hurting, so they gave me lidocaine in a little shot glass. I'm going to try to remember to take a picture of the next dosage as it truly does look like a shooter of some delicious type of alcohol. Anyway, THAT finally worked, but boy does it feel weird, as it numbs your entire mouth, tongue included. o_O But whatever. It works. I can take it every 4 hours, so come 10:30, damn straight I'm having another!

ARGH!!

I am so angry! In my Dead Celebrities post, I wrote this:

The other performer is Minako Honda, an 80s pop star who turned into a very successful Japanese Broadway actress. She was diagnosed with acute myelogenous leukemia (so, NOT the same kind as mine) in January of 2005 after feeling short of breath (well well) at a concert. She kept getting treatment and kept having relapses and died seven months later. She was only 38.

I found out today that acute myelogenous leukemia is the same thing as acute myeloid leukemia, so it IS the same type as mine! I am SO ANGRY from finding this out. Not scared, not worried, but ANGRY. So pissed off. I hate being angry in the hospital, there's NOTHING to do with my anger. Well, except write, I guess. It's better than nothing.

Dammit, Minako-san! No offense lady, you were AWESOME, but I am NOT having remotely the same fate as you. I REFUSE. >:/

Slight headache? HAVE SOME OPIATES!!!!!!! o_O

lol, I had the following conversation with my (awesome) nurse through the bathroom door (which made it weirder somehow):

My nurse: Hey, how's your headache? I can't give you tylenol because it might mask symptoms of an infection. We can give you dilaudid instead!

Me: Uhhhh....wow, no, that's really quite OK! My headache's really not THAT bad, I'll just wait it out.

Nurse: Oh, you don't have to do that! How about codeine? Have you ever tried that?

Me: Wow, these are really strong meds. My headache's really not a big problem. It's OK.

Nurse: Oh, codeine's really not that strong. It's fine. I mean, your body will turn it into morphine, but it's OK!

Me: ..............I think I'm OK for now. But if it gets worse can I let you know?

Nurse: Of course! You can change your mind at any time.

Now it's been a couple hours since that conversation and my head still hurts quite a bit so I'm thinking, fuck it, I'll just take the damn codeine. I think I need to make a list of all the new meds I'm trying. lol having cancer is gonna turn me into a druggie. :P