Archive for July, 2006
Monday, July 31st, 2006
Wow, who’d have thought I’d write 40 damn installments of this crap?
Of course, there were times when I never thought I’d be this close to being done, either. Four months…124 days. Wheee-haaawwww.
So I’ve been on the lowered dosage for about a week. Overall, it seems to be better. I’m less fatigued, less weak, less cranky. I still have all those symptoms, but they’re not quite as bad.
Still, the biggest consistency is the inconsistency. One day a shot doesn’t bother me at all, the next day it leaves me sleeping for 18 hours and stumbling around like a drunk.
What the hell is that? I get all the drawbacks of being drunk and none of the advantages. That bites.
Anyway, not much to write about this go-round.
Maybe not having anything to say right now is good. Means there have been no truly terrible days, no trips to the hospital, nothing like that.
On the other hand, maybe not having anything to say is bad. Means it’s all become so routine, so daily, that I hardly notice it anymore.
Way back in December, when all this started, it took me a while to get used to ‘cancer victim,’ or ‘cancer patient,’ or whatever. I simply couldn’t get my head around having that attached to my name.
Now, it appears I have a whole new thing to get used to: ‘cancer survivor,’ or ‘kicked cancer’s ass long and hard and then spit on it.’
Again, a strange thing to hear after your name, but more cool than what I was hearing in December.
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Sunday, July 23rd, 2006
What a week!
Eating like a pig, exercising going extremely well, sleep doing okay, tons of energy, tons of really hy-sterical jokes. What a great week.
Sadly, tonight I’ll go back on the juice. I hate that, but the doctor decided we’ll lower the dosage again and see how things do. So I’ll go from 16 million units to 14 million. Last time he lowered the dosage, the result was like, as Steve Martin says, “discovering verbs…my novels really brightened up after that.”
Not much to say this time around. Everything is great and I love life again. Got some good writing done this week, got some good housework done this week.
Oh, stupid ass, almost forgot. I went to the hospital Tuesday and had some tests. The Doc was concerned about pain in my chest when I exercise, shortness of breath, and a slightly enlarged heart.
So I did the echocardiogram, which is like an ultrasound. The tech wouldn’t comment officially but said she’d been doing it awhile and didn’t see any problems. Then I went to the breathing test, convinced I had just about zero lung capacity. Well, turns out I was WAAAAAAAYYYY higher than the averages. Every test came up 109, 111, 113, 119 percent higher than normal. The breathing tech said that had nothing to do with any deviated septum, just lung capacity.
Anyway, the doc said both tests looked good. He’s convinced the enlargement is from the chemo, believes it’ll go away pretty quickly after I get off the chemo. So that was good news, and seemed to be borne out by the fact that only a week off the juice, my exercising was the best I’ve ever done.
I did have an interesting thought, though. Talking to my mama yesterday (after she ‘voiced concern’ about my exercising too much. I love her but she’ll always be the mama, you know?), she told it turns out my uncle Bud died of leukemia. No one even knew he had it and it wasn’t apparent until after the blood work got back days after he was dead.
A person’s normal white blood cell count is between 4,500 and 10,000. Uncle Bud’s was 42,000.
Holy White Blood, Batman!
Mom said the white blood cells were generating new white blood cells so fast that his red blood cells were getting squeezed out. Red blood cells, as we all know, carry oxygen to the organs and limbs and where ever. So his system was losing oxygen. The organ shut was down was so fast that even though he was in the hospital by midnight, he was dead by 8 a.m.
There were no other symptoms of the cancer.
Man, how scary is that?
Anyway, that got me to wondering. Are my oxygen problems — breathing during exercise — vaguely related to that? I know my red blood cell count is down a bit, though I’m not sure how much. Could it be that my systems aren’t getting enough oxygen when I push them a bit harder?
I wonder, too, if suddenly hitting the wall on the exercise a few weeks ago was where the oxygen depletion was. In other words, I did fine for a long while because I hadn’t hit the limit of oxygen in my blood yet; I still had room to improve. But I’ve improved so much now that maybe this is the best I can do until I’m off the juice.
Maybe that’s it…coupled with the juice, too, obviously.
Idle speculation. Doesn’t matter anyway. I’ll do what I can do, keep exercising because it helps me feel better (the endorphin rush is very cool) and because it helps my immune system. When I’m done with the poison, I’ll do better.
Actually, I feel pretty good about it all right now. It’ll be interesting to see if I still feel this good by mid-week when I’m taking the shots again. That depression that I know is chemo induced but that I can’t seem to do anything about might be back.
Piss on it.
Amy K had it right a few days ago in her comments.
“Suck it up,” she said. “By my calculation (it’s) 138 more days.”
Actually, right now, it’s down to 132 days, with one more little break end of September. It’s getting close…so close. Maybe I’ll start posting every day when I’m down to 100, just a constant daily countdown. Like a VH1 special: The 100 Greatest Days Until Chemo Free Countdown.
Shit, I should submit that, maybe make some money, help pay for the chemo.
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Monday, July 17th, 2006
Aaahhhhhhhhhh….
It’s like so many things, this being off the chemo for a week. It’s like the afterglow of really great sex. It’s like the perfect ice cream cone when the temperature outside is sweaty hot, but not instantly melting your cone hot. It’s like the perfect spring morning in the mountains when birds different from the ones heard in the city sing.
Mostly, it’s like having the black hood taken off my head.
Suddenly, I can see again. Suddenly, I can breath again. Suddenly I’ve got energy and an appetite and my jokes are funny again…okay, semi-funny.
What has been interesting to me, during this particular break, is the self-awareness of the depression. I knew, last week, I was depressed. I knew it was probably mostly chemo-induced, with touches of concern about my enlarged heart, about the last four months to go, about my exercise routine, etc.
This is going to be tough to explain so bear with me (and yes, those of you dying in this massive heat sink with no air conditioning can bare with me).
Intellectually, I knew — or was pretty sure, anyway — the depression and all of its effects were from the chemo. I believed I ought to be able to ignore it. If I know my life in general wasn’t the source, then I should be able to compartmentalize, to say, “I know what this is and it’s not me so piss off.”
But I couldn’t. Even as I sank further into depression, even as I knew what was causing it, I couldn’t stop it. And trust me, it was deeper than it’s ever been, stronger and more pervasive. Maybe that’s because I had the enlarged heart hanging over me, too, I don’t know. But this time, the depression scared the shit outta me.
Now, four days since my last injection, I’m fucking rocking, dudes and dudettes. Sgt. Atkinson even bemoaned his vacation schedule today, “I’ve got four days of you like this before I can leave the state,” or words to that effect.
‘Like this’ is energy-ridden, bouncing off the walls, singing pirate songs (”I am a swashbuckling pirate man. With a giant righteous gland and sword as big as a ship.” It’s my own creation, thank you, very much.), telling great jokes, being a general pain in the ass.
The depression lifted that easily, that quickly, and left me doing this odd navel-gazing analysis of the problem, of how self involved it was to think about the whole thing. It reminded me of that really great scene in Ocean’s Twelve where Julie Roberts, playing Tess, agrees to Tess’ impersonating Julia Roberts and then calls Roberts’ house, only to talk to…the ‘real’ Julia Roberts.
I know, a tenuous connection at best. But I think of it because of what thinking about the depression and its cause does to my brain. I know what it is so I shouldn’t think about it but I can’t because it scares me because maybe it’s not totally the chemo even while I know that when I’m off the chemo it won’t exist anymore blah blah blah.
Anyway, right now, today, I’m not even depressed about the time I have left on the juice. I’ll juice up again later this week, maybe this weekend, and I’ll go a couple of months, then take another little break for a writers convention, then be done a few weeks after that.
Last week, I was ready to blow my fuggin’ brains out because of four and a half months left. Today, hey, it’s what has to be done. That simple, that easy to digest. This is where I am, fair or not, do what I gotta do.
Can you tell I feel good? Hell, I’m writing my brains out on this damn journal and it’s not even all that interesting.
Hah, check back next week. I’ll be cranky and tired and depressed and moaning about the state of the world.
Yeah, can’t wait for that.
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Thursday, July 13th, 2006
It’s hard to explain how much I hate all this.
I find it difficult to dig up the right words, to make myself clear. Maybe I’m just a shitty writer, but maybe it’s because chemo keeps me generally foggy and muddy-brained. Regardless of the why, the right words just won’t come.
Maybe some of the details will help. Most nights, I’m in bed about ten hours. It’d be great if all that were sleep, but it’s not. Quite a few nights I only sleep for tiny snatches of time stuffed in between periods of being wide awake. All this in spite of wanting to sleep 24 hours a day. When I do wake up in the mornings I know — with absolute certainty — I’ll be tired all day or have a headache all day or be unable to eat. That knowledge is wearing.
Most days, I find myself sitting in my office or in the squad room at work or behind the counter at the bookstore with my head in my hands, my stomach roiling around while my legs and feet become heavy as clay. There is simply no energy to do whatever needs to be done.
As a writer, I tend to write pretty fast; couple of chapters per week. But with the new novel, I’ve done four chapters in six months. There is simply no motivation, even though I love where I am so far, to go work on the damned thing.
Who knows why I’m writing all this, I’ve gone through it before, over and over until I’m sure you’re as sick of reading about it as I am of writing about it. But what’s different, what has surprised me, is that I’d thought it would be great once I got better than halfway done.
It’s not great, it’s the same old drudgery. The tyranny of routine, I guess.
At the doctor this morning, Dr. Vukov was happy with most of the tests — blood work, chest x-ray, physical, etc — and said all my levels looked good and normal…normal for where I am, anyway. But he was concerned about my x-ray from a couple weeks ago.
“You’ve got a slightly enlarged heart,” he said.
Holy fucking crap.
He tried to assure me it was probably nothing, that Interferon does all kinds of strange things (and told me a story of a patient of his having massive kidney failure…uh, thanks, Doc, that picks me right up) but that once I’m done with the treatment, all that will fade back to normal.
Maybe it’s the chemo, maybe it’s a gathering of fluid around the heart. Maybe this maybe that blah blah blah.
Then he asked me about any history of heart disease in my family. “Uh, yeah. Grandfather dead at 30 of a heart attack, father had a heart attack at 32. Mine was at 34. So, yeah, bit of a history there.”
Between that and telling him that I have a bit of shortness of breath when I exercise (maybe it’s because of the double-deviation in my septum…maybe it’s because of the unremitting humidty the last few weeks…maybe it’s because of allergies…maybe this maybe that blah blah blah) I’m suddenly scheduled for an echogram and some kind of breathing test.
And oddly, I’m not worried about the tests (I think it’s the chemo’s fault), but I’m worried about how the hell I’m going to pay for all this crap. The bills have piled and piled until the hospital asked me if I wanted either a low-interest loan to get them paid off or an application to be classified as a charity case. In other words, go deeper into debt to pay the debt or be pathetic.
Thanks, I appreciate it.
Mostly, at this point, I just want a break. I want a two or three week break with no drugs and no tests and no inmates and no phone calls and no jobs. A medical furlough, I guess.
Sadly, not going to happen.
But, in a bit of decent news, the doctor has agreed to give me another break from the chemo. A week, anytime in the next few days, and then when I get back on, he might lower the dosage just a bit.
Not as much as I wanted, but more than I thought I’d get. I’ll take it.
And in the ugly news, yet another family member died recently.
My Uncle Bud Hamilton. I didn’t know him well but enjoyed his company whenever I found myself in it. Though he’d been sick in the past, he’d been fairly healthy lately. His death wasn’t as much of a shock as with William, but shocking none the less. Because of my general weakness, I won’t be able to drive the sixteen hours to go to his funeral.
Man, oh, man, I need a break.
December 2…december 2…december 2….
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Tuesday, July 4th, 2006
At first, I couldn’t tell what was going on. I was at the jail and LuAnn was in the lobby. Crying, very nearly hysterical.
“William is dead,” she said, burying her face in my shoulder.
“What?”
“William is dead.”
Then there was nothing but heartbeats, some hers, some mine, trapped between us and filling the lobby with a harsh thunder.
A car crash. Two sixteen-year old boys, neither wearing their seatbelts. They slammed into the back of a grain truck, left no skidmarks.
William, LuAnn’s nephew, drove, still giddy about recently getting his driver’s license.
No skidmarks. And going fast enough to tear up the back axle of the truck they hit.
No skidmarks.
They didn’t even see it coming. One minute they were gabbing, probably talking about girls, maybe changing one CD for another in the stereo. The next?
No skidmarks.
William was a good kid, had been as long as I’ve known him. Once, about ten or eleven years ago, LuAnn and I had traveled from Colorado to Illinois to see everyone. William, all of maybe five, had latched on to me and dragged me to a local park. We played on the swing and ran around, had a high old time.
Two days later, just before we left, I heard William on CB radio that connected my in-laws’ place with the farm a few miles away. “Little guy no go home. No, little guy no go home.”
I was little guy. To this day I’ve no idea where that came from, drawn up from the depths of a kid’s imagination, I guess.
A few years later, when the family came west to Denver to visit, William got a little crazed when it seemed like his dad was going to get on my motorcycle and take a ride. Didn’t want Daddy riding without a helmet, I think.
Wanted him to be safe, to survive the ride, come back still the Daddy.
And now Daddy is still here, but William is gone.
I won’t cry and yell and howl about how unfair life is. Life is what it is: fair, unfair, frequently ugly and sometimes beautiful. Maybe my Catholic mother-in-law is right and William is in a better place. Then again, maybe he’s no place.
All I know is, this place is less interesting because he’s not in it.
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Tuesday, July 4th, 2006
Okay, not that I’m obsessing about the days left on chemo treatment, but I’m now officially less than 5 months left. Wheee-haawwww!
Strange to think it’s been seven months since all this bullshit started. What’s more strange is that some of it — going to the treatment room, trying to sleep or read during the daily treatments, being hesitant and scared when it came time to give my first shots myself — seems like a bad dream. It’s kind of soft and fuzzy, like bad photos in a late ’70’s Penthouse magazine.
Here’s an odd detail. I’ve complained to people about my mouth, how it always feel coated and thick and nasty. I was sitting outside this morning, playing ball with the dogs, and I spit. What hit the sidewalk was solid white and didn’t evaporate in the heat.
Ooooohhhh, gimme some more of that.
No wonder everything has an aftertaste, huh?
But only five months left. Five months five months five months. Call it my new mantra. Some people have “Ohhhhmmmmm,” I have five months left.
Good news on another front, too. A writer friend of mine, battling cancer far worse than mine, and battling it longer than I have been, just got back from the Mayo clinic. He to see about a transplant. The doctors did some work, discovered things were slightly better than everyone had thought, and put the transplant off for a while.
I wish him all the best and for those of you who’ve said you’re praying for me, toss some prayers his way. He needs them, too.
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