It Came From The Porch : All About Me

Leukemiatic Thoughts : these are just written down as I think them, in progression, not all at one time.

zoeyglass7 (6:40 PM): is it active or is it something that comes and goes?..i know nothing Aahzekiel (6:41 PM): it's chronic and it's here all the time. It's a chromosomal defect. My body doesn't know when to stop producing white blood cells, so they sort of clog my blood and my spleen. Aahzekiel (6:41 PM): makes my blood not work very well Aahzekiel (6:41 PM): doesn't move oxygen and nutrients around well Aahzekiel (6:41 PM): I'm on medicine that makes me basically normal... Aahzekiel (6:42 PM): but it won't stay like this forever. Aahzekiel (6:42 PM): I've gotta have a bone marrow transplant to be cured. zoeyglass7 (6:42 PM): and it causes you to lose hair.. Aahzekiel (6:43 PM): no Aahzekiel (6:43 PM): chemotherapy does that Aahzekiel (6:43 PM): I'm bald by choice. :) zoeyglass7 (6:43 PM): how long have you known about this or how did you find out zoeyglass7 (6:43 PM): are you undergoing chemo now? Aahzekiel (6:44 PM): found out on september 24. Went to the doc cause I had lower back pain... turned out my spleen was so swollen it was pushing my organs around. Aahzekiel (6:44 PM): I'm on a pill form of chemo. Aahzekiel (6:44 PM): it sucks. zoeyglass7 (6:44 PM): wow..this is recent zoeyglass7 (6:45 PM): 5 months or so Aahzekiel (6:45 PM): oh yeah. the site is part of an attempt for me to deal with this. Aahzekiel (6:45 PM): they want to hurt me a lot to cure me. zoeyglass7 (6:45 PM): are you afraid? Aahzekiel (6:45 PM): bone marrow transplant ain't gentle. Aahzekiel (6:45 PM): of course. Aahzekiel (6:45 PM): about a 30% chance I'll die in the process. zoeyglass7 (6:45 PM): is this terminal? i mean even with the tansplant? Aahzekiel (6:45 PM): and it's gonna suck regardless. zoeyglass7 (6:45 PM): wow..have you been reaing alot about this Aahzekiel (6:45 PM): the transplant will cure it, but if I didn't do anything about it I'd be dead in five years. Aahzekiel (6:45 PM): no, not really. zoeyglass7 (6:47 PM): is that with all cases zoeyglass7 (6:47 PM): when do you have to do this? zoeyglass7 (6:47 PM): i bet youre tired of pople asking about this all the time Aahzekiel (6:47 PM): not really Aahzekiel (6:47 PM): I think about it all the damn time, may as well talk about it Aahzekiel (6:48 PM): I need to do it ASAP. I skipped my last appointment with the docs, had a really REALLY bad night with my girlfriend the night before the appointment, got shitty drunk, couldn't go in. zoeyglass7 (6:48 PM): do people ask you about it all the time? Aahzekiel (6:48 PM): so I'm rescheduled in march. I've gotta decide when to do it then. THAT fucking terrifies me. Aahzekiel (6:48 PM): no Aahzekiel (6:49 PM): part of why I announced it on the net. If I talk about it, it's more real, I can't ignore it. I was trying to ignore it. Aahzekiel (6:49 PM): that's not good. Aahzekiel (6:49 PM): gotta deal with it zoeyglass7 (6:49 PM): nope..i bet it isnt good for you to stay drunk alot either zoeyglass7 (6:49 PM): is it apinful now? zoeyglass7 (6:49 PM): painful zoeyglass7 (6:49 PM): i mean is that why you smoke all the time zoeyglass7 (6:49 PM): i doubt it but i just thought i would ask Aahzekiel (6:50 PM): not at all... I'm much more healthy than I've been. I've had it for a year or two, and it'd been making me progressively sicker. Aahzekiel (6:50 PM): now that I'm on medication I'm much MUCH more healthy. The chemo makes me feel like shit sometimes. Aahzekiel (6:50 PM): helps to smoke. Aahzekiel (6:51 PM): I'm on antidepressants, and the drinking directly counteracts those, so I've GOT to stop drinking, or the antidepressants won't work... Aahzekiel (6:51 PM): and things suck enough as they are. zoeyglass7 (6:52 PM): hmm..how do your parents feel about it? Aahzekiel (6:52 PM): they're freaked. zoeyglass7 (6:52 PM): i bet they are zoeyglass7 (6:53 PM): i would be..that is hard to deal with for you and them Aahzekiel (6:53 PM): I mean, they're good to me... zoeyglass7 (6:53 PM): or anyone that cares about you....unconditionally Aahzekiel (6:53 PM): I moved back in with them when I first got sick. That lasted about two months. It was pretty bad. Aahzekiel (6:53 PM): I needed it at first, but we couldn't hit that fine line that would let us live together during a stressful time. Aahzekiel (6:53 PM): My mom especially freaked out. zoeyglass7 (6:54 PM): why? Aahzekiel (6:57 PM): guess she couldn't deal with her oldest kid being potentially fatally ill. Don't blame her, but I didn't like it. zoeyglass7 (7:03 PM): was she ugly to you? Aahzekiel (7:03 PM): well... Aahzekiel (7:03 PM): ok, dig this:3 Aahzekiel (7:03 PM): (sorry bout the 3, it's next to my enter key! I keep slappin' it) zoeyglass7 (7:04 PM): oh i thought it was a funny looking nose zoeyglass7 (7:04 PM): or something Aahzekiel (7:04 PM): when I moved back in, I made it really clear that I did NOT want to do that. I REALLY didn't want to be living off of them. Aahzekiel (7:04 PM): I make my own money, pay my own way. Aahzekiel (7:04 PM): (or try to!) Aahzekiel (7:04 PM): so one night I kinda freaked out... Aahzekiel (7:04 PM): was crying and freaking, saying that I was bummin' off them and hated it... Aahzekiel (7:05 PM): she got down on her knees next to me and swore over and over that it was not a problem, would nerver BE a problem, Aahzekiel (7:05 PM): that I was to put it out of my mind and get well. Aahzekiel (7:05 PM): That they NEEDED me there. Aahzekiel (7:05 PM): So I calmed down. Aahzekiel (7:05 PM): Two months later, the first fight we had, she immediately hits me with "You don't pay the bills around here!" Aahzekiel (7:06 PM): It hurt more than a little. zoeyglass7 (7:06 PM): lol..you gotta love that.. Aahzekiel (7:06 PM): oh yeah. I freaked. Aahzekiel (7:06 PM): I left. zoeyglass7 (7:06 PM): my mom is just like that Aahzekiel (7:06 PM): I got the apartment at 2005 right about then. Thank god. Aahzekiel (7:06 PM): Of course, her reaction was "What? I thought you were going to live HERE!" Aahzekiel (7:06 PM): and my reaction was "Yeah, and I thought you were gonna treat me decently." Aahzekiel (7:07 PM): oh well. Rob went over and talked to my parents. zoeyglass7 (7:07 PM): so you havent lived there that long.. Aahzekiel (7:07 PM): no, but Rob and Sid have been there for a long time. Aahzekiel (7:07 PM): And I hung out a lot before I moved in. Aahzekiel (7:08 PM): So basically, it boils down to this: I love my folks, they're good people, but we simply can't live together. zoeyglass7 (7:08 PM): oh...well i know the feeling..

This leukemia thing kinda sucks (he says with a twisted smile). Well, duh! It's fucking with my emotions in a bad way. I can see intellectually what needs to be done (read: get my ass to Birmingham and let them hurt me a lot and complete the bone marrow transplant) but I gotta tell ya, friends and neighbors, it ain't something I'm looking forward to, and I have a strong tendency to ignore things I don't like. I'm trying not to, but meanwhile it's whacking me. I think I said that. Anyway, I'm working on it. People have generally been great to me about it, putting up with these mad changes of mood and my increasingly erratic behavior. So huge thanks out to all who've put up with my ass - you know who you are.

Write it, write it all.

I'm having a hard time with my parents on this one. They're not pleased that I'm being so frank here... or frank about certain things, I suppose. But the things that I talk about - that they'd rather not hear about - are part of my life, part of what is happening to me. Life is hardly a series of unrelated events. It's all connected, and needs to be viewed holistically. To see the whole, you have to see the parts as they relate to one another. Remove or hide one element and suddenly the relationships you perceive between events or emotions are clouded and inaccurate. Garbage in, garbage out - an old programmer's maxim that applies equally to any situation where you're trying to create a cohesive picture from the available data.

The Only Constant Is Change

Things have settled down a bit. The Paxil is really helping, and the while the whole shock of having cancer is still very much there, it's such a steady thing that I hardly notice it. The people around me aren't as freaked out as they were, and believe me, that was hard to deal with. For quite some time, it seemed like every day I had to tell someone new that I had cancer. Don't know whether you've ever thought about it or not, but that is an incredibly draining thing to have to do, to tell something horrible like that to these people I care about . I get the joy of watching horror and sorrow flit across their faces, watching them search themselves for the correct response. Guess what. There really IS no correct response. I'm not sure I want to live in a society where you have a correct social answer for what to say when your friend tells you they have leukemia. That implies that it's such common occurance that the correct response been incorporated into daily usage.

Most people kind of freak because I'm almost always extremely cheerful when I tell them. I think it helps to confuse them a bit with my seeming happiness... it doesn't let them sink into pity or get too far in their own imagination about what it must be like. I constantly hear "You're dealing with this so well," and while it's not really true, it's fine with me if they think that.

So things are a little more settled. I'm more or less (gulp) ready for this transplant in June. I want it to be over, I want to get on with my career and Dogwood and Mobile. I feel like I've got so much to do.

I really hope I don't die. It's not moving on to another state that bothers me, and frankly I am a bit excited about the prospect of a totally new experience, but there's stuff here I want to do before I am ready to move on. I just got started, dammit. Life's a bitch, but it's beautiful just the same. My life is rich right now, and like I've said before, in a way that scares me. I believe in a balance, and if the balance is swinging towards me right now, giving me so much richness in the space of a few months, it makes me feel like that may be to compensate for it soon being cut short. I certainly hope not. I do not want to die in a hospital bed.

note: my doctor thinks I am MUCH too fatalistic, so I may be kind of out of line here.