personal
Journal 8.2
I haven't written anything in awhile. I have less energy than I did before. You go through 5 rounds of chemo and keep up daily posting.. I'll tip my cap to you. Apologies to anyone who thought maybe I bit the dust last week. No, I'm still here. Hanging on. But for all the shit I've gone through, the lymphoma is on its last legs and that's what counts.
Journal 7.14
Just a bare-bones update this time. I didn’t journal for a few days because they were shitty and I wasn’t up to it. A couple of them involved fevers. Lots of nausea. The odd throwing up of a meal. You know, the usual.
Journal 7.8: Setbacks
Last time I wrote, I was optimistic about going home tomorrow. This morning, the doctors informed me that the lymphoma has regrouped and that I need to start a brand new round of chemo today. I'm currently getting my premeds. Here are some words to describe how I'm feeling:
-pissed
-depressed
-demoralized
-cheated
-shocked
-violated
-deceived
-bitter
This was totally unexpected. This was supposed to be the time that I ACTUALLY got to go home, to recharge my mind and regroup for the months of long battles ahead. But no, instead I'm in the same bed waiting to get more death chemicals that will make me feel like shit for the next week, give me fevers and nausea and take away my appetite and force me further toward addiction to the pain meds. I'm floored. The rug has been pulled out from under me. Again.
Journal 7.6
I’ve had about four days of calm. More than that, improvement. As of yesterday, I have an immune system again, albeit a vulnerable one (my doctors made an analogy calling it a “baby immune system” since all the cells are completely new and not all that strong). I also have enough platelets in my bloodstream that if I got shanked in a bar fight, I could probably make it to the ER if my friend drove fast enough and didn’t make any wrong turns. I’ve also gained a few pounds, my eyes are looking better and I just feel stronger overall. It’s hard to believe I’m the same guy who vomited all that bile in the trash a few days ago.
I’m probably going home Wednesday. No, really this time. It’s not a tenuous thing… it’s something the doctors are planning on. They just want to see me stay as stable as I am for another day or two and wean me off the pain/nausea medications before they let me go.
I’ve been hospitalized since April 28th (except a day and a half in early May) and now it’s July. When I went in, if I recall correctly, gas was still under $3.50. Now… … yeah… well, I don’t expect to be driving for awhile, anyway. That “baby immune system” of mine isn’t quite ready for many public places yet, and my colitis is still completely out of control. Since I’m only going to be home for a maximum of 10-15 days, tops, there’s just not opportunity for much travel. But that’s ok. I have plenty to do at home and hope to have a lot of visitors.
Journal 7.2
Just a quick update since there's really nothing good to say. I've been running a fever for 2 days now, topped off at 103 last night. My white blood cell count is extremely low. I also have a possible strep infection in my pic line, so they might have to take it out and put me back on regular IVs. That means getting stuck with more needles. Last thing, my ulcerative colitis has been raging and I've been losing a lot of blood, so the doctors have put me back on the TPN diet, which means I'm no longer eating food, but rather getting calories through a line. I threw up twice today.
Streaks of White
6/6/08
Every morning look outside the window
Watch the ants a marchin down the freeway
Almost wishing I was them 'cause I don’t have the choice
But only 'cause I don’t have the choiceWhen everything you know gets ripped away
In the time it takes to read the doctor's face
Wondering if I will live but trying not to cry
Trying not to cryHear strangers screaming out into the night
Wonder what dark things they must be facing
Every night it's something else, the pain is in the walls
The pain is in the wallsBut then I started seeing miracles
In all the things I used to take for granted
Saw vibrance where I once saw grey, and light in everything
Light in everythingSaw friends I hadn't seen in years and years
Reaching out so scared with blind compassion
Feeling how they wish me well, I want it even harder
I want it even harderAnd I will live today the best I can
So each tomorrow greets me like a bonus
Day by day I will survive 'cause I'm not done with life
Oh, I'm not done with life
Journal 6.26
I had a couple horrible days but the last two I've been pulling out of it. Thanks again for being there for me, I feel all the warmth and even though I haven't been able to reply to everything, I'll never forget you and if you should ever find yourself in a situation like this, you can bet your ass I'll be there for you as well.