Wishing on a Blue Star (41 page)

As the saying goes, “Nice guys finish last” and that often seems to be true, except in that greatest race of all called life. There, the nice guys seem to finish up well in advance of the assholes. I can think of a number of oldsters whom I would consider assholes-- mean, ill tempered, unpleasant people for whom everyone else is a stepping stone, or a toy, or something of a sport perhaps. They are as healthy as a horse and look like they’ll be around for decades more. Yet there I sat, not even fifty years old, too damned tired to get into a chair, and not at all guaranteed I’ll see my next birthday. In the words of every five year old who’s skinned his knee, “It’s not fair.” Unlike the five year olds, I *am* old enough to know and accept that life rarely is fair, though. Doesn’t mean I like it though.

As I sat there, cross-legged and contemplating my options, I realized that the weight I thought I was steadily gaining since stopping that drug was nothing more than fluid filling up my legs again. Shit. So much for the illusion of improvement, and so much for thinking I have any options at all. There’s simply not enough meat left on these not so old bones to lay back and rest up without paying a heavy price later on, and not enough gas in the engine to get me back where I belong.

So, grab the phone (there’s a reason why I take the damn thing with me wherever I go) call Papa, and ask if he can give me a hand.

What he must have thought, opening the door and seeing me on the floor I can scarcely imagine, but it can’t have been good.

Papa is not a demonstrative man. He was raised in a time which was not conducive to physical touch, yet as I sat there head down, my eyes closed in a futile attempt to ward off shame, he puts his hands on my shoulders and asks in a quiet voice, “What can I do.”

No preamble, no exclamations of surprise or fear, no fuss or muss. No
anger
as a cover to hide his feelings of frustration. Just a simple question, and at the sound of his voice, I lose it. (Hell, I can barely recount this without rubbing at my eyes. I’m *still* losing it.) :)

“Can you help me get back into my chair? I’m sorry, I’m sorry, sorry...”

“It’s okay. Do you want me to lift you?”

“Yes,” I sob, unable to keep from thinking of all the times he (and I) did the exact same thing for Mom in her last year, and hating myself for being a reminder of that horrific period in both our lives.

Without a word, he lifts me high enough to get my feet back under me and stands close while I sit back down in my chair. I can barely look him in the eye when he asks what else I need.

I ask him for something to eat, it’ll be the first I’ve had all day, and a refill on my water glass. I scarcely ever ask him to prepare anything for me like that, and having to do so now only adds insult to injury.

He brings me a bowl and a cup a few minutes later, plus the pillow the kids stole from my room when they were here the other night, (it’ll soon be necessary because my chair has no more cushion than I and my butt was already sore from sitting on the floor) and stands by while I pull myself together. He asks if there is anything else I need and when I shake my head and thank him, he walks away, closing the door behind him.

That last part bears repeating because its the crux of this whole story.
He walks away and closes the door behind him.

How that must have cost him, Papa, who spent every moment of his time with his wife while she failed by inches. He knows I am as fiercely independent as she once was, and I know full well it is his respect for that *need* to be independent that turned him around and put the door between us-- to preserve as much of my dignity as possible, despite the fact he more than likely wanted to stay, to help, to do whatever else he could.

I have never been as close to the man as I was to Mom so I can only guess at his thoughts as he walked down the stairs. I know my situation bears a striking resemblance to Mom’s and that must have been on his mind. Knowing that I’ll eventually become as she was, and who could blame him if he perhaps thought “Oh crap, not again.”?

But if I were betting dimes to donuts, I’d say
that
thought didn’t cross his mind. I can only hope he felt something like gratification at finally being able to
do
something to help. Gods know I don’t make it easy on that score, always insisting I can manage the way I do.

That’s something I came to understand oh so slowly, that once in a while, regardless of what it cost me, other folks need to feel useful, like they have some slight measure of control over the situation. Maybe it’s to lend a hand, listen to me rant or wail, or even simply make sure the water pitcher is full.

I realized how important it is for them because when you get right to the very end of things, it is the people who remain behind after we leave who pay the ultimate price. They only have memories and grief to hang on to afterward. It therefore falls to me to make as many good memories as I can to overbalance the loss, even if it means my sense of self takes a shot in the arm, or a shot in the chest.

For Papa, the gem I found when I hit the bottom of the barrel, I’ll take any blow that comes, and it’ll still never be enough to repay the man a fraction of what I owe him for that one simple act of walking away.

Thanks Papa. I love you.

Happy Father’s Day.

Patric

Tuesday, June 22, 2010

I feel good

(Editor’s note: Blogger wouldn’t let me in for far too long, and part of this entry should have been posted several days ago.)

I had a brief conversation with Papa last night where we discussed my situation, what it really means to stop taking vorinostat in the long term, and general financial issues.

I’m making the transition to a fixed income, which for some might sound scary or bad, but given the sporadic nature of my career for the last twenty years, having a definite, reliable, consistent amount coming in is like manna from heaven. :)

I suppose, in a way it is, though the cost is awfully high.

Anyway, he went to bed and I got to work on another audio book, and as I listened for background noise, stumbled or misspoken words and whatnot, I came to a stunning revelation:

I feel good.

Such a simple thing, that. People say it all the time when their world goes the right way, when someone give them a birthday card, or just because the sun is shining. In my case, nothing hurt (drugs are so handy for that) I didn’t feel particularly stupid (from said drugs, for which they are NOT handy) and I had nothing hanging over my head, like how to pay bills until the government finally gave up and paid out. Moreover, I was confident Papa completely understood the ramifications I had explained, and what that most likely meant for the long term, just as I understood them. His understanding and acceptance, as well as the rest of my family and friends is huge.

It’s funny what we walking dead guys grab hold of to fuss about, though in retrospect I suppose worrying about how others will get along after we are gone isn’t so strange after all.

Anyway, the net result of all this was a feeling I can only describe as ‘contented’. The feeling of not having anything nibbling at the back of your mind except how nice the feeling is.

Some might say this is a very self absorbed post, and in an earlier time I might have thought the same thing, but now it matters that I mention how I feel because so many people who read this and have followed along are almost as deeply involved in all this mess as I am. I could wish it weren’t so, for their sake, but I do understand it, at least. So it is for you who read and follow and care that I post this, in the hope that you can feel good too. :)

Addendum:

Several days have passed since I had that revelation, and a few things have happened along the way. One is that I continue to improve physically, albeit slowly, and I can pretty much eat whatever. Occassionally, I am even hungry. :)

Another is that I sent an update message to Doc, catching him up on what all has happened since we last spoke, etc. I got a reply from him this morning, pretty much confirming what I already believed; that we are at the point where all we can do is watch and wait, and see what happens. I had mentioned the idea that I had come full circle, meaning that once the last vestiges of the harmful effects of the vorinostat were finally gone, I’d be a few months shy of the point where I was a year ago when I first met him. Fever cycles are rare, (none, in actual fact, for the last week) just beginning to retain water, and so on.

His email confirmed my suppositions, and we agreed to simply watch and see. This gives me time to recharge, so to speak, and when (if?) the cancer progresses to a point where it seriously affects my ability to function, then we can look at the “traditional” chemo again. I’m fairly certain we both agree that it’ll only ever be a holding action, a way to add a few more quarters to that proverbial parking meter, but as I said in the past, I’m good with that.

The third thing, and this is actually the more important of all these events, is that my sister and I talked for several hours this weekend. We got a number of things sorted out and the end result is that I can look forward to her visiting from out of state. Never mind that the thought scares the shit out of me because I no longer look like how she undoubtedly remembers me. That part has ever been a huge consideration because I remember how upset she was when she saw mom for the first time in ages, well into that point where she had become frail.

For as much as my sister has always defended and championed her quiet, not-a-fighter brother, I know full well I’ve always been her rock, and to see the rock a bit crumbly cannot possibly be an easy thing.

All in all, for the first time in a year, I finally feel like I have all my ducks in a row. My family and most of my friends have come to quietly accept what will happen far too soon, I am almost free of the constant hassle of dealing with insurance companies, and paying bills, I’m on track with my doctor and myself, and the sun shines more often than not, now.

The net result? I
still
feel good. :)

Now if you’ll excuse me, I’m sort of hungry. I gotta go find something to eat.

Cheers!

Patric

The Better Part

Clare London

Let’s face it, memories of school days are meant to be precious things, like winning the football cup, or discovering more to maths than a scrawl of ant’s poo over the page, or setting fire to the desk in Chemistry with such a blue flash that you finally –
finally
– get Billy Dean to look over and notice you…

Not the memory of nearly pissing your pants in front of the school bully.

I was a short, weedy eleven-year-old, with glasses that sat awkwardly on my skinny nose and nothing much going for me except my sense of humour. And a rather dangerous one at that.

When we spotted Tod Baxter snatching a quick ciggie around the back of the science block at the end of the school day, I made some smart comment about his thickset, shaven head bobbing between his cupped hands as he nursed the illicit hit. Something about looking like a prick with ears. And rather more unfortunately, I said it aloud.

Baxter swung his bulbous head around and stared right at me. My friends dematerialized like the smoke from his cig. The wind keened around the abandoned wall of the block, cold and mocking.

Well, I could have run. Should have. I was never going to win any Rocky contests, but I should have reached the other side of the playground faster than a hungry whippet. Then maybe found some kind of schoolboy Witness Protection scheme. My gut was churning, my bladder threatening to embarrass me at any second. My legs were like jelly and my eyes were stinging already from the tearful anticipation of pain.

But instead, I squared up to him. Made my small sweaty fists and stared back at him. He looked astonished. For all of five seconds, before he began to lumber towards me.

“Charlie, you stupid prick,” someone murmured, quite cheerfully. It wasn’t Baxter. He wasn’t known for being articulate, just homicidal. I hesitated.

And then another kid appeared. Not just appeared, but snuck up behind Baxter. I couldn’t see exactly what he did, but he must have kicked him in the back of the knees or something. I saw the big guy’s eyes roll and his legs buckle. Even as he crumpled down heavily with an ‘oof’ of pain, I heard “Run,” hissed in my left ear.

I leapt around Baxter and ran like blazes, all the way home. I didn’t pause until I was on my own front step, and I knew he wasn’t following. And then realised the other kid was beside me as well.

“Thanks,” I panted. I rubbed my damp palm on my trousers and stuck out my hand. “Charlie.  Chas.”

“I know,” he said, but he shook my hand anyway. “Adam.” He hadn’t broken a sweat at all.

“What you said back there.” I grimaced.  “I
was
a stupid prick, right?”

“Right.” His grin just made me want to join in. “It’s not as if you’re any match for him right now. You’d better sign up for those boxing classes after school.”

“What classes?” I said. But I’d been looking at the call-up notice on the board before the start of school that day. Didn’t know someone had been looking over my shoulder.

Rather surprisingly, Tod Baxter never bothered me again. And that was when Adam started looking out for me on a regular basis.