Wednesday 31 July 2013

Like a minefield, or something

I couldn't focus on anything today. Life is really boring when you can't concentrate on anything long enough to enjoy it, and life is really depressing when you can't forget about the horrors within it because you're unable to distract yourself from them.

I've come to the conclusion that living life in remission with such an incredibly aggressive cancer must be what living in a war-torn country is like. You wake up every day, and you worry if you're gonna get blown up or shot when you leave your house, 'cause the odds are NOT in your favour.

I dunno, does that comparison even make sense? I think it does. At least it does to me. For now, anyway!

Monday 29 July 2013

Mighty Morphine Power Ranger

I ended up back in the ER this past weekend with TERRIBLE abdominal pain--like, seriously, I couldn't even walk. They put me on a morphine drip while they ran tests to try to figure out what it was (they were worried it was my gallbladder) and OMG BEING ON MORPHINE ALL DAY WAS TOTALLY THE BEST THING EVER. Not only did the pain go away instantly, so I had that experience of going from excruciating pain to blissful peace, but I was SOOOOO HAPPY. It was such a happy feeling! But it made me SUPER-sleepy too, and to say I was 'out of it' is the understatement of the century. Omg, I was in and out of the most pleasant, goofy sleep ever all day long. They sent me for X-rays and an ultrasound and during the ultrasound I fell asleep and the poor technician had to wake me up...hahaha. I remember babbling to her about SOMETHING but who knows what it was! Also, I remember at one point I woke up in the X-ray/radiation hallway on the stretcher with my bags and thought, screw this, I've had enough of sleeping, I'm gonna read some manga! Yeeeeaah! So I sat up and started fishing through my bag looking for my Zelda manga and then all of the sudden--BOOM! Next thing I know, I was on my back again, staring up at the ceiling. I had LITERALLY fallen back asleep while looking through my bag. I was so surprised and amused. Nothing like that has ever happened to me before, not in my entire life!

In the evening I got more morphine and then benadryl as they gave me some blood transfusions, and I slept and I slept and I slept and I felt just so incredibly happy. The next day though, it was not so fun! The pain had completely gone away, so I didn't need any more morphine, so I was stone-cold sober in a tiny little isolation room in the ER and very uncomfortable--and I had a bad reaction to my last blood transfusion, a fever of 39.9! O_____O Luckily, they were able to give me some tylenol (I say 'luckily' as sometimes I'm not allowed depending on how they're monitoring my fevers and/or white blood cells, etc.) and my fever went down and I got a visit from one of my hemotologists and he said I was able to go home, soooo in the end I didn't have to stay TOO long the 2nd day and I was discharged by the mid-afternoon.

Oh, and the horrible abdominal pain? We never figured out what it was. Our mutual best guess is that it was a pulled muscle/charliehorse, a result from the horrible way I sit at my computer.

Thursday 25 July 2013

Getting used to missing out on summer

I've been so out of breath today. My counts are at zero (it sure took long enough!) so from here on there's nowhere to go but up, but I'm sure I'll be neutropenic for awhile; apparently you're neutropenic for longer and longer each time you get chemo, and that certainly seems to have been the case thus far. I can't believe it took this long to get to zero! It's going to take forever for them to come back up again, certainly. Especially considering how I was neutropenic last time I got chemo. Man...so house arrest continues, as usual, but it hasn't been all THAT bad; I'm getting used to missing out on every social event there is, and to not seeing anybody, and missing the whole fucking summer. Anyway, I've been watching tons of anime, playing lots of video games, and reading lots of novels, so it's not like I haven't been staying entertained. Today I've been feeling just awful though (physically). Really out of breath, like I mentioned, and dizzy, and seeing stars..so far I've gotten three transfusions this week. My doctor changed my appointments so that instead of going to the day clinic at the hospital twice a week for blood tests (and transfusions if I need them), I now go three times a week, so that they can keep a closer eye on my bloods. It's annoying having to go back & forth so much, but it also feels safer, as I'm under closer watch (which is the point). I've been kind of on edge lately, as the day after tomorrow it'll be five months since I got diagnosed. Why this bothers me is because I'm terrified of relapse; AML has a high relapse rate (this is where those dreadful percentages come in to play) and I somehow gotta make it to three years without a relapse to be considered 'in the clear' (and even then....). A friend of mine on Facebook posted a mind-blowing comic from the wonderful XKCD about this very subject when I was worrying about it on Facebook, and it made me feel sooo much better and less alone. Here's the comic:



Wednesday 17 July 2013

DONE!

Chemo's done! I was discharged yesterday. :) It went relatively really quite well, I didn't get anywhere NEAR as sick as I did the other times. I am so relieved, and that's an understatement. So, that's it, then. Nothing left to do but rest and recover, and wait for them to find a donor. It's weird. This is it! That's all there is. I gotta keep going in for blood tests, but as the months go on, they will apparently be less frequent. I still have to go to them, because that's how they keep an eye on my blood cells to make sure I don't relapse. I hope I don't relapse. Ohhhhh I hope I don't relapse! I can't live my life being afraid and anxious with every blood test I take, but I haven't figured out how to put that into practice yet. Think good thoughts for me! xoxoxo

Sunday 14 July 2013

Oh yeah, I'm back in hospital again

So I'm microwaving food innocently in the family room which I have to myself, of COURSE people have to come in, and some lady (NOT a patient or hospital staff) comes up to me and says in a SUPER-cheery voice, "hi, how are you?" and I don't answer cuz I don't feel like talking to a random stranger. So she switches to French and asks me the same thing. So I felt bad and mutter "hi" which she took as an invitation to keep talking and ask how I was doing. I'm just warming up my food bitch, that's how I'm doing. I just very quietly said "good." WTF. You wouldn't wander up to a stranger in a mall or on the bus and do that, what makes you think you can do it in the hospital? "Oh, I'll go brighten a cancer patient's day a little!" No, you're not, you're bothering this cancer patient a little. I'm not your good deed for the day, FUCK OFF.

I dunno, I've always hated random strangers talking to me and it's the main reason I've always, always, ALWAYS worn earphones in the public for the past ohhhh 15 years or so. (Some people STILL don't get the hint.)

5 years

After all these years, I still think EVERY DAY about what a luxury it is to walk around my own home in bare feet and feel the wooden floor b...