Wishing on a Blue Star (49 page)

And never mind that with the help of such generosity in others I could almost literally stop the world; to return or go elsewhere, or do anything I chose.

It was that moment, that precise instant when so many variables and choices and possibilities and circumstances coalesced into a
memory
, no different from any other, that was lost. Forever. I would never again be able to re-create that exact instant no matter how hard I tried.

How many other moments have I let pass all unheeded in my lifetime? How many times did I briefly pause to notice something interesting only to set it aside thinking I would come back to it later?

How much time have I let slip away while I was girded within the impenetrable armor of health that demands we believe nothing of ourselves but our own immortality?

The thought hit me so hard I would have been driven to my knees were it not for the metal railings of the stairs we descended. The stairs I discovered when I returned home that Papa helped build. (If I were not already a firm believer in irony, that discovery alone would have served as a full blown course of study.)

“My God, it’s beautiful here!”

Dear Sean, completely unaware of my moment of existential epiphany, exclaimed as only he could; with a loud, gravelly voice that serves to mask a heart larger that the mountains which surrounded us. The comment was Sean’s way of trying to make me think he wasn’t waiting for me to catch up. Never once did he become impatient or irritated because of my slow, careful pace as I navigated the rocky terrain. Never once did he gasp and tell me to be careful as I stepped across a narrow gap, or ventured too close to an edge.

Never once did he remind me that I was sick.

And I latched onto that moment of understanding and tucked it away for the future, just as I had my earlier revelation. The
moment
may have been lost, but the memory and the appreciation would remain. Forever.

“No kidding! C’mon, lets go down to the river.”

I was again as I had once been; alive and full of eager curiosity, recalling the fact that my most favorite outdoor activity of all was to explore the nooks and crannies and the hidden swirls and depths of a river. And yes, I could
feel
his brief flash of panic as I climbed over the retaining wall to get to that place all the signs marked as “Danger!” but Sean held to his nature and said nothing. Instead he followed me, and not even so close that he would have been able to catch me if I had slipped and tumbled into the swirling water. Another lost moment held forever.

We played and explored, and rested, and explored a bit more until I ran out of juice, and as we ascended the steps back to the car and something cool to drink, I realized I had been a fool.

Not unexpectedly, once I was told (or rather when Doc confirmed what I already suspected) that my time was limited, I started grabbing at every little thing, trying to hold on to them against the coming loss, desperate to keep and treasure every ounce of life that I could. But as I climbed those steps, thinking of what I had just seen and felt, I realized it was all too easy to lose what I already had in hand in favor of grasping for something just out of reach.

Yes, treasure every moment, lost and held forever, but not at the expense of trying to *make* new moments. That’s the trap, all to easy to spring for folks like me, that is the real danger. It’s not unlike ignoring the beauty of Winter in favor of longing for Summer. Something I have done in the past.

Needs must I hold on to what I have and let whatever will come, come of its own accord, without any frantic grasping on my part.

Put another way, I have to stop fretting that someone wants to take my picture and just let them, regardless of how much I hate being in front of a camera. By doing so, I’ve given someone else what they want, and got that flash of a pleased smile in return.

It’s my reward for not fretting the little stuff that in the end, doesn’t really matter anyway.

So, dear friends who read this blog, and those who come to rescue me from time to time, and anyone else I have yet to meet. Take my picture. I’ll grumble as is my nature, and try to hold still as best I can, and in doing so we’ll both have created lost moments we can treasure forever.

Cheers!

Patric

Monday, August 23, 2010

The Times, They Are A Changin’

I woke up with a fever this morning.

The same as I did yesterday, and the day before that.

If you’ve been following along since the beginning, you’ll recall that I had such repetition just before I met with Doc for the first time. In the month that followed while a variety of doctors tried to arrive at a diagnosis, those fevers “spiked” repeatedly.

By the time we started chemo, I’d bounce between 97 and 102 degees as many as six times a day, and that same pattern is forming again.

In short, the final countdown has begun.

In nine days, it will have been exactly one year to the day that I met Doc for the first time, and as I think back on the last year, I am startled to discover how much my world has changed. How much *I* have changed, really.

In a nutshell, I am no longer content to sit back and let whatever happens, happen.

The circumstances of my life, within the context of my condition, have changed enough for the better that I find myself wanting more and more to stick around, to do something useful with the time I have, and get my grubby paws on even more time if I can.

Put a few more quarters into the meter, as it were.

To that end, I sent a message to Doc updating him on my current status, and we will meet in a couple of weeks to determine whether or not I can survive another round of chemo. Unfortunately that’s not just a bit of over dramatization when I say ‘survive’.

We know the chemo was at least partially effective against the cancer a year ago, but we also know that the further into the regimen I went, the less I was able to recover between cycles. Recall that being the reason why we stopped at six, rather than the planned eight.

That was a year ago, when I weighed fifty pounds more, and I was unarguably stronger. I had
reserves
back then.

Now those reserves are gone, consumed by the horrific effects of the Vorinostat in conjunction with the still unidentified stomach problem that all but destroyed me. Without those reserves, even a lesser dose of chemo in fewer cycles might do for me as surely as the cancer.

But then again, it might not, and that is at least a chance I don’t have if I do nothing at all.

To me, it’s a chance worth taking. :)

I told Papa about all this mere moments after I read Doc’s replies, and asked him if he had any objections to my attempting the chemo. He looked startled for a moment, and replied in an almost indignant voice, “Of course not!”

It was the reaction I would have expected, but strange as it sounds, I needed to make sure he understood the ramifications and the effect my actions would have on him. As I explained to him, there is every likelihood I wont be able to be as self sufficient as I was the first time, and the burden of my care will fall directly on him as a consequence. Not only because he is the closest at hand, but because he is the *only* one I trust not to make me pay for it in favor of their own feelings and considerations.

“Well, I’m down with it as long as you’re sure, or you believe it will help you,” he says.

I puzzled over that for several minutes before I understood (or think I understand) his comment. He was basically saying “As long as it doesn’t kill you faster than the cancer does.”

Oh yeah. Begin the waterworks. :)

“Well, that’s definitely a consideration,” I say. “Obviously I’m not as strong now as I was the first time, but that’s why Doc wants to meet with me to assess the situation, and really, when you get to the bottom if things, at least it’s a chance.”

He nods and goes about making his breakfast while I slip away, neither of us quite able to look the other in the eye. We are far too butch to watch the other snivel. :)

Shortly after, we continue our day. There is a propane tank to be refilled, and new glasses I ordered (because I can see enough of a future to warrant the purchase) to be picked up, and errands to run, and once the damn drugs kick in, it’s a good enough day to do them.

As we drive around, him patiently waiting between stops while I make various calls about insurance and schedule appointments and such, I am overwhelmed by how lucky I am to not only die with such selfless company, but to
live
with it too, for however long I can.

Some fourteen hours later as I finish this post, the drugs have worn off and with the sickness I haven’t felt in almost a year slamming through my body like a freight train, I know damn well the road ahead is going to be bloody hard to travel, but I am *still* grateful that I can walk it at all.

Somebody please remind me of that when in some future post I am whining and bitching about barfing my breakfast and losing my hair. Minor shit in the grand scheme of things when you think about it because the key word here is future. It may be short, and we may not be able to make it longer, but I still have one. :)

Cheers!

Patric

Sunday, September 5, 2010

Transitions

“I never lie.”

This is a statement I have made, and stood by, ever since I crawled my lumpy ass out of the closet and stopped insisting I was straight. I looked behind me the day after that door slammed shut and realized I had been
living
a lie most of my life.

Until recently, I was convinced of my veracity. But reading back through this blog, and the comments made by so many people, I came to realize that sometimes, under certain circumstances, an omission is as good as a lie.

Oh, I don’t mean that I willingly or consciously, deliberately held my tongue, it’s just that I didn’t pipe up and temper the statements made about how “good” I am.

Laugh... Already this is sounding like some existential examination of self worth, and I suppose there *cough*
might
*cough* be some merit to that. Tomorrow I will meet with my oncologist to decide if I am physically capable of withstanding another round of chemotherapy. If I can, and it works, I get to stay on this rock yet a while longer. If not, well, I still have a few quarters left in the fabled parking meter. If there were ever a time to be existential this would be it. :)

At any rate, any number of generous, thoughtful people have read this blog, read the messages I post in various groups, and even listened to me prattle on face to face.

Each has formed an opinion, just as anyone would do while getting to know someone, and almost universally, the consensus is that I am strong, brave, insightful, and even inspirational. In short, folks seem to think I am a good person.

While I
try
to be a good guy, I can’t say they are wrong because I respect other people’s perceptions, but I can’t say they are right either because I know about the other half of myself. That darker, less pleasant collection of parts I generally don’t show off to the rest of the world.

I am cynical, opinionated, judgmental, moody, and cranky more often than not. In short, I am just like everyone else. :)

That means while I can *be* all those things folks say about me, I am also quite capable of storming and ranting and acting decidedly unpleasant. In other words, I can be an asshole.

Why does any of this matter?

Because I need it to be clearly understood that while I might be put on a pedestal, and even with reason perhaps, such a lofty elevation is not my natural habitat. Not only is it sometimes difficult to breathe up there, but by seeming to be something I am not, I lose the freedom to express myself fully, to bitch about the things that piss me off or frighten me, or gods forbid, preclude me from living what’s left of my life *AS* my life, and not that of some impossible ideal.

I also like being able to say “I don’t lie.” :)

Now, with all of that said, we come to the reason for this particular post and that a growing awareness that my perceptions are changing right along with my physiology.

I originally started nattering in this blog to update the myriad queries of how I was doing when all this started. When that leveled off and the answer was pretty much always the same, it then became a place to gripe and bitch instead of letting the shit bottle up inside and eventually explode all over the people around me. Finally, the intent of this blog is to give insight into what it is like to be terminal. Something no reasonably healthy person can truly understand unless they are already “there.” Not even a close association with someone who’s time is limited can really reveal all the things that have changed.

Since I have a rather deplorable habit of finding something good in most rotten situations, these posts began to feed that pedestal raising concept of being brave and “inspirational.” Not necessarily a bad thing, but I came to realize (or believe, whether its actually true or not) that if I were to suddenly fall back into grumbling about things that I might somehow let others down. Intellectually, that should be nonsense, but I have never been *only* intellectual. Emotions play as strong a part in my world as anything else, and I am just as susceptible to fear as anyone else.