Wishing on a Blue Star (40 page)

Mitch smiled, reached out, and took Aldo’s hand. “Let’s find out.”

Friday, June 4, 2010

It’s the little things...

For the last three nights, I cycled around the 10:00 pm hour, which tells me that what once happened early in the morning when no one could see is now wide open for Papa and whoever else to witness first hand.

I’m no kind of martyr to dutifully suffer in hidden silence, believe me. I just know firsthand how horribly
useless
one can feel when confronted with a situation like that. No words or touch can make the pain go away, no suggestions of going to the ER will keep my stomach from doing its level best to exit my body, and no amount of crying with frustration will give me the strength to withstand another cycle. Better for everyone concerned to keep that hidden away when it happens, if I possibly can.

If there is anything good to be found in the unfortunate timing, its that those around me can see firsthand the
relief
when its finally over. It ain’t much, but like I said, it’s the little things. :)

Which, happily, I got a handful of last night when I *didn’t* cycle on schedule. Add to that the receipt of a missing paragraph in an audio book I am editing, plus finding and installing a truly nifty off-line back up and sync program (my inner geek is over the moon!) and I felt, for the first time in a very long time, actually *human*. Especially when you consider that I managed to eat an early morning snack, breakfast, lunch, and dinner, (albeit in small quantities) and kept it all right where it belonged! That last bit was the best news of all, until about 12:30 am last night...

... when another cycle started up.

Mind you, these things happen in a very specific, very consistent pattern and the trick is to catch them *before* they get a foot hold. If I can do that, if I can get enough drugs in and working before the pain gets out of hand, then I end up with a wholly manageable, “news from a distant country” thing that leaves me feeling twice as relieved. And I cannot begin to express how good that feels. :)

I’m always going to cycle, and if the experimental drug fails they will increase in frequency, but knowing I can arrest them at least sometimes, is an immeasurable load off my mind.

Enough so that I might once again feel like a real live human boy, and not a puppet cast about on the strings of cancer.

Whoo hoo!

Patric

Thursday, June 10, 2010

Well... Shit.

I got a call this morning from the assistant at Doc’s office telling me to stop taking the vorinostat. As a recap, that’s the experimental drug he’s chosen as a last ditch effort to combat my cancer.

One of it’s known side effects is the possibility in some patients for the drug to screw up the body’s electrical timing, for lack of better words.

In my case, according to the EKG I had a couple of days ago, and comparing it to the base reference we took before I started the drug, my QT Intervals are too long now.

A brief cursory search reveals that “QT Interval” refers to the time between the start of heart beat and the end. As I understand it, as the heart contracts (pumps) it dumps its electrical charge. Then there is an amount of time necessary for the muscle to recharge so it can contract again. If sufficient time hasn’t passed, or the time is too long, and the heart tries to contract again even though it isnt ready, you end up with ventricular arrhythmia.

In a nutshell, I run the risk of “sudden heart attack” if I continue the drug.

Trouble is, if I don’t take the drug (and it actually works for me) then I run the near certain risk of dying from the cancer.

Which as I see it (unless Doc can find an alternate solution) pretty much means I can either die fast, or die slow.

Which would you choose? :)

Patric

Monday, June 14, 2010

The Regard of Strangers

As I sat down to write this post, I was suddenly stuck by which part to start with; my good news, or the generosity that prompted me to write in the first place. It took barely a moment’s thought to realize the gift was far more important because it represents how good others, even strangers sometimes, can be. And damn me for being too cynical, but that sort of thing never fails to impress me. :)

Several days ago, Papa and I were headed home from yet another “fill the prescription” excursion. Because these are narcotics, they cannot be refilled over the phone. Instead, a new scrip must be written each time. That means a trip to Doc’s office to get them, a detour to fill them, and whatever else we can squeeze into a trip to town.

As we sat a few cars back from a busy intersection, watching lights change, a pickup started forward when his side turned green, and Papa starts shouting.

“Hey! Whoa! Watch it mister! You’re gonna... Too late.”

I surface from my usual internal fog to see what he’s hollering about, sort of tickled that he’s actually yelling at all because there is no way the driver can hear him. The pickup in question apparently dropped it’s load just as it started forward, leaving some kind of heavy siding splayed out behind him.

In an earlier day I’d have been one of the first to pull to the side and go help the guy re-load. Now-a-days that’s wholly out of the question of course, and the knowledge immediately made me sad because the driver was an older fellow with his elderly wife (presumably) and he’s already starting to yell at her as he gets out of his vehicle.

It’s easy to presume he’s embarrassed and cognizant of the impatience of the traffic behind him, most of which will simply swerve around him (and more often than not dangerously) to put his problems as far away from themselves as they can.

It’s a more or less recent development in human nature, this “me first” attitude, that makes my skin crawl and sometimes makes me glad I’m not long slated for this world.

So of course the driver yells at his wife, right? Meh. The poor thing is maybe five feet tall, and her hair is as white as snow. No way my heart couldn’t go out to her, and oh gods above, is that a grandson getting out of the cab into traffic as well? Shit!

As I sit, trapped by the failure of my own body, unable to help and
too
able to imagine what might happen, I am startled to see two hulking bruisers
running
through the oncoming traffic to get to the helpless driver and his predicament. Two twenty-something guys had pulled over and got out to help, and all I could think, beyond the sheer surprise that anyone *would stop* is that they are gonna get clobbered.

Instead, they make it to the driver and one immediately take charge, tossing the material back into the truck while the driver and his wife get out of the way. I hope to hell Grandma had the little boy tucked safe. I couldn’t see because still others stopped to help, all while the cross traffic, including a city bus, squeaked by within inches to get around and go their course.

I noticed the panhandler on the corner, mere feet from the event, did nothing except wave to his cronies (they rotate working that corner) and point to the problem. That right there is all the reason I’ll ever need not to give those bastards a nickle. (Remember my aforementioned cynicism here.) Yes, he had a cane which he use to do the pointing, but at the very least he could have stood and redirected incoming traffic with it. If he can stand on a corner all day and beg, I should think that wouldn’t have been beyond him.

Papa and I were in the far left lane, so we had to wait for our oncoming traffic to clear and as it did and we turned and drove away, I was left with the real regret that I’m literally physically unable to help as I once could, but that feeling was overshadowed by the fact that
someone else did help
, against all hope or expectation. Several someones, in fact, and it made me think there might yet be some reason to hang around a while longer on this dusty mudball full of greedy, insensitive people.

Case in point:

I got a call this morning from a friend of mine, asking if I had any problems or reservations about someone else utilizing their cash and resources to send take down notices to a few pirate sites on behalf of my books. Piracy is theft, no matter how one tries to justify the futility of fighting it, and I hate it despite my inability to send the notices myself when they come to my attention. It doesn’t take much time to do, individually, but it can literally become a full time job if you are energetic enough, and I flat don’t have the steam anymore.

Anyway, it seems an author I know but have never read is incensed that *my* books are being pirated, in light of my situation. No doubt they are as adamant about any piracy, but they asked my friend to contact me, not wanting to “bother” me themselves, and see if I was okay with their efforts.

Wow! First off, I had no idea they even knew I existed beyond the occasional message in an authors group, much less them keeping an eye on my titles, and you could have knocked me over with a feather.

“Yes, of course I’m fine with it, though I admit them spending money on my behalf makes me a bit uncomfortable,” I say. I also add, “I had no idea they even knew who I am.”

My friend laughs and says “They said the same thing. They figured you didn’t even know who they are.”

There is a lesson in there, somewhere, that speaks of how small our great big world really is, and how too often we wrap ourselves in our own little piece of it, unaware of how we might overlap or influence others wrapped in theirs. It’s a lesson I knew only peripherally, which has now been brought fully home due to the regard of strangers, who aren’t so unknown to me after all.

So let me take this moment to thank the strangers who read these words, comment on them or not as their proclivities demand, and those who are not so unknown to me, for your unexpected generosity, kindness, and regard. It is a reminder to me that there is yet reason to fight and squabble and rail against the unstoppable while I sit in my quiet little corner and reach for another day.

And on that note, recall that I stopped taking the vorinostat. Remember too that it takes several days for anything like that to leave your system, and if it caused any damage, still longer to recover from it. This last week was evil. I have no better word to describe how I felt, and if anyone were bold enough to ask, I would have said at the end of them when things were at their absolute worst that I wouldn’t live to see August.

Since then, the vorinostat is gone and I am recovering from the originally very subtle and increasingly debilitating side effects of the drug. With today’s improvement I am now all but certain it *was* the drug causing the latest round of problems, and for the first time in ages I am hopeful that I can at least gain enough weight and resolve the dehydration issues to once again find quality, rather than mere subsistence in my days. Already I’ve been able to drink more than a liter of fluids yesterday, and even eat a little bit, and keep it all down. That alone is a huge win.

Naturally, without the experimental drug, and until poor Doc find another last ditch effort ( if he even can) I can look forward to my original year longer instead of just a few weeks, and that’s something I am quite happy about because I’ll have all the strangers, and not so strangers, friends and family, to live with . :)

Patric

Friday, June 18, 2010

The Bottom of the Barrel Hides a Gem

Caution: Pure, unmitigated sniveling ahead. Proceed at your own risk.

Yesterday, I got a taste of what it’s going to be like near the end, and it was all the worse because it was so unexpected.

For some strange reason, sleeping almost always heralds a transition; from bad days to good, from good to bad, and all points in between.

And of course, sleeping is unavoidable.

I woke up, still fatigued as usual and didn’t think much of it. Aside from the mental clouds caused by the narcotics, fatigue is the single most debilitating thing I have to deal with on a daily basis, so its not all that odd to fall asleep shortly after I wake up in the morning.

Only yesterday, each time I dozed off or formally went to sleep, I’d wake up even worse than I was before. I haven’t a clue why, unless it’s because I missed taking my morning dose of morphine. Whatever...

By the time ten p.m. rolled around, I’d been awake maybe four hours out of the whole day, and I was flat exhausted. I took the nightly round of morphine, tried to get back to my bed, and ended up on the floor.

Laugh if you will, but it is impossible to describe what its like to not have enough juice to stand up out of a chair. As I sat there, wondering how in the hell I was going to either get back in my chair, or get all the way over to my bed (a whopping ten feet away) I realized that this is what I have to look forward to in the final months.

People are forever telling me I have a great attitude, that I’m an inspiration, whatever, and I suppose to a degree there is truth there, but like anyone, I too can be caught up in that most unanswerable of questions:
Why me?

I have spent my life actively trying to be nice to others. I don’t hurt animals, I don’t ridicule people (much) I don’t bully anyone, and I always put others first. All the things I was raised to believe made one a “good person.” I *like* being nice.