Wishing on a Blue Star (36 page)

The procedure is as simple as it is gruesome: Surgeons remove the affected portions of the lining in his esophagus with the hope of removing all the cancerous tissue. Since they caught it so early, his prognosis is good, and while they wont know for a while (more of that wait and see business) they’ve a good idea that his cancer had not yet reached the muscle layer which means his chances for a cure are high.

He came home this afternoon in good spirits, looking as good as ever, armed with a plethora of painkiller cocktails (lidocaine mixed with milk of magnesia for example) and grumbling that he has to puree his food for a while. (This is a guy who likes to eat, so that’s the worst of it for him at this point.) :)

As I listened to him rattle off the list of prescriptions he was given for after care, it dawned on me that I had at least one valid, valuable reason for my situation: I’ve already been where he’s at.

Papa is not the sort of fellow to explore his condition, nor is he likely to puzzle out the “doctor-speak” of the medication inserts, but I am. Armed with the education I now have from dealing with my own medications, hospitalization, and what-not, I can pave the way for what he’ll face and best of all, explain things to him in a language he can grasp, without being overwhelmed or intimidated. Plus I can help him navigate the pitfalls of the so-called health care as his treatment continues.

It’s easy for me to wonder and lament at why all this has to happen to me, but I now have at least one answer that serves as all the reason I need. He doesn’t have to go it alone. Right now, there are no unknowns for him because I’ve already been there, and with that understanding, I can easily accept my situation as a way to ease his.

Looking at it that way, we’re both damned lucky.

Welcome home, Papa. :)

Saturday, May 22, 2010

Crossroads

I went to Doc’s office today to pick up a prescription. His place is in the Hospital campus and as I walked past the Admittance building, I was overcome by a surety that I was done with the place.

Not because I ate dinner last night and didn’t lose it, nor because breakfast and lunch stayed down today. And not because I’ve become fatalistic and given up, either. In actual fact, the reverse is true.

I am about a month shy of my one-year anniversary, the day I limped into a clinic for the first time with a lump on my leg and retaining way too much water because of it. Two dear friends quite literally strong-armed me into the place, each holding an arm so I wouldn’t bolt and run.

From that auspicious beginning, I’ve run a gamut (or a gauntlet, depending on your point of view) of doctors, clinics, specialists, free medical assistance, insurance companies, helpful and not so helpful state and government agencies, and ended up pretty much where I started from. I have a lump on both legs, and both are holding tens of pounds of water again.

I don’t think I’m being too dramatic by saying without that gauntlet, I wouldn’t be here now. Certainly not well enough to blog, at least. If nothing else, they’ve given me a year more. Perhaps with what I’ve learned so far, I’ll get still a few more. :)

In that year, I’ve learned that I am terminal. (We all are, actually, just with differing expirations on our respective meters.) Gallows humor aside, I learned to live with that. Surprisingly easy, that. At least when there is no other choice. I also learned a great deal about the medical industry; how it works, what it can and cannot do, and most importantly, who really makes the biggest difference in how my life goes:

Me.

I discovered that tests are specious at best for my situation, and I learned that many specialists are literally incapable of thinking outside the box. I also learned that if I am to have any time at all, any quality time that is, it’s gonna be up to me to find it and make it my own.

Don’t get me wrong here. Doc is aces, golden, an angel to a guy who doesn’t hear heavenly choirs when he sleeps at night. Doc always will be, regardless, and I cannot think of a soul I’d rather have at my back than him. It’s just that his hands are tied, by variables and constraints neither he nor I can control. There is too little information on my condition to make anything more than educated guesses, and too much likelihood that whatever he might want to try isn’t covered by insurance because it costs too much, isn’t in their formulary, or hasn’t been proved successful to a majority. No fault whatsoever attaches to him. Ever.

As I mentioned before, I’m about to lose the insurance given to me by the state for being disabled, BECAUSE I’ll be classified as disabled. (There is an irony there I will leave for others to ponder.) When that happens, I’ll fall back to the free programs and hate myself for it because they are limited resources that might be better spent on someone with a longer future. Yet I’ll be grateful too because it means I won’t lose contact with Doc. He generously lets me sound board with him sometimes, corrects my ignorant thinking and steers me to more salient answers, and doesn’t get paid for it. To a guy who has lived his entire life knowing that nothing is ever free, that’s huge. I can only hope that his experience will be a learning one for his future patients, and tht he can get something half as valuable out of it as I do.

I realized the other day that I’ve become exactly what I didn’t want to be; someone who lives by dint of the drugs he’ll take for the rest of his life. Setting aside morality and integrity, that means how long I live will depend solely on whether or not I can afford the cost of the drugs, and for how long. Since no one will hire the “walking dead guy” there is another irony in the fact that by being granted disability, the thing that will cost my insurance, I’ll be able to buy some of those drugs, and I’ll live yet a while longer.

That’s great, right? Anyone who knows me (and quite a few who don’t) will unequivocally say yes, but they are not totting up the real cost.

Quality versus quantity.

I’ve been adamant since day one (literally) that I refuse to live longer if life is only a subsistence. I’m simply not me if all I can do all day is lay in bed and drool because I am so loaded with painkillers, and I can’t see me changing my mind on that score.

I was thinking about this as I rode the elevator to Doc’s floor to get that precious little slip of paper that tells some pharmacy I have legitimacy in begging for pricey, not-always-effective narcotics. Those little blue and white and gray and orange pills that keep me functional from day to day. What would happen if I stopped taking them? What if I just chucked the bottles down the drain and said “screw it.” and walked away?

I’d go back to the condition I was in a year ago, have maybe six or eight months to get my affairs in order, and spend the rest of the time in hospice, laying in bed and drooling, loaded up on more white and blue and gray and orange pills until my body finally gave up and gave out. Plus I’d have the added benefit of watching people I care about become increasingly agitated as my condition declined. My niece, she’s pretty much my daughter, would collapse long before I did, Papa would get to watch his wife die all over again, my sister would be eaten away by guilt because she wasn’t around when Mom died, and people I never met would mourn a loss they probably couldn’t clearly articulate. I’ve touched too many lives with my writing, my email, my time online all these years, and with myself. Just being me.

Thinking about that pisses me off.

It’s far too late, even if it were possible, to roll back time and quietly expire as I could have done a year ago. I’d have the advantage of surprise on my side at least. No one knew I was sick back then, and there were far fewer to care.

So... Since I can’t go back, and I refuse to stand still, that leaves only one option to go forward.

Me.

The doctors have admitted outright that they cannot fix what’s wrong with my stomach. Doc has admitted there is no cure for my cancer. (And bless the poor man, I have a strong idea it hurt him a great deal to say that.) While I have it, insurance won’t cover the cost of the drugs that do work, sort of, and what I have now will run out sooner or later. And since I am the one living in this skin, there is no one better qualified to analyze, sift, sort, and extrapolate how best to resolve the problem(s). It short, it has to be up to me to fix myself, or failing that, figure out how best to deal with the situation for as long as I can.

I know the patterns of pain and fatigue from last year. I can monitor how much liquid goes in and out, and I can handle the inevitable fever spikes that will come soon. I planned ahead for which painkiller works best, and have held it in reserve by throwing away (use them first until my body grows too tolerant of them) all the expensive ones first.

What I have to do now is learn how much pain I can endure, how to endure it, and how to get past it. I’ll prevail upon Doc to help me understand various bodily functions, triggers, enzymes, and hormones when I can’t find the answers for myself, and I’ll create a situation with the tools I have at hand to manage the things I can’t change. Programs for assistance in buying painkillers, adjusting myself to whatever I can find that’ll be within my price range when assistance is unavailable, and even keeping my fingers crossed if that’s what it takes to live, and not just subsist.

People have said I’m smart, intelligent, call it what you will. I know I have a brain and I have relied on it heavily for all the years of my life. I like solving puzzles, and when you get right down to it, all this is just another kind of puzzle.

One I’ll either solve, or die trying. (Okay, that was gallows humor, I admit. Sorry!) :)

The point is, I’ve come to a crossroads and I’ve chosen my path. If I am to stick a few more quarters in the meter, if I am to live a few more years, it’ll be because *I* took the steps, *I* made the effort, *I* did what needed to be done, rather than sit around and wait for someone else to save me.

And you know what? I’m good with that. I’ve always, always done for myself for as long as I can remember. No reason at all why that should change now. :)

Patric

Tuesday, June 1, 2010

History repeats itself

I notice that Blogspot doesn’t have one of those little icon thingies to indicate mood like LiveJournal does, unless it’s an add-on widget, so I’ll just have to do it (gasp) manually.

Mood: Pensive, and a little melancholy.

Lately, I find myself resentful of people, in general. Not because they have done anything wrong or egregious, but because they are so unaware of what they have at hand.

Waiting at a stop light the other day, I saw a family eating hot dogs from a corner cart and I thought, “Damn, I wanna be able to do that.” Not the hot dog, necessarily, but just open my mouth, bite something, and not have to either force it down or wonder if I’ll see it again in a half hour. Eating is such a simple thing that we take it for granted.

Or the kids crossing the sidewalk at the same time. One of them tagged his buddy in the back of the head and bolted the rest of the way across the street, laughing as his pal chased him. Such a simple thing, to run a few feet, and yet, that’s beyond me right now.

I see stuff like this and I can’t help be annoyed with myself for all the times I’ve ever done something similar and took it for granted.

On a more intellectual note, I got a communication from a dear friend that was so far out of the norm for his usual messages that I was startled to silence. It was a rant over some truly minuscule subject and I couldn’t help think (to myself alone) that he needed a serious change of perspective. Or as my father might once have put it, “What does that matter to the price of eggs in China?”

But the thing is, to him it *did* matter, a great deal. His horizons are so vast that he can no more contemplate ‘the whole picture’ any more than I can sprout wings and fly. And because he is my friend, it had to matter to me, but only so far, and I felt bad that I couldn’t commiserate with him. Nor could I slap him upside the head and say “You aren’t going to care about this a year from now, Bud. I don’t even know if I will
be here
a year from now.”

In other words, I can’t dump my perspective on him. Beyond the simple courtesy of not making him feel bad for forgetting the now very real differences between us, it’s simply not fair to ask anyone to change themselves to accommodate me.

Conversely, there are any number of people who *do* remember, and when they indulge in the time honored tradition of “can you top this,” they always say something like “I know it doesn’t compare to what you are dealing with, but my old football injury is acting up today and my knee hurts.”

I’m honestly not sure which is worse; When folks remember, or when they forget. Both wrench my guts for very different reasons. The former for the knowing that by my very existence I’ve put them in a position to contemplate their own mortality, and the latter for knowing that they will take too much for granted and regret it later on, as I have.

Yesterday, I was answering messages, typing away as usual and when I stopped to pick up a bottle of water, my arm laying across the desk was wet with sweat. Ah, I remember now. I had to drape the chair and parts of my desk with towels at about this time last year because of the fever cycles and the constant sweating as each fever broke.

It was a very clear indication of just how far along the cancer has progressed. At a guess, I’d put myself about a month shy of where I was last year, before that first round of high dose chemo. Left unchecked, in about a month the fevers will spike to around 102 degrees and I’ll be changing clothes three times a day. The problem is, I hadn’t realized I was that far gone, and it’ll take roughly twice that to determine if the experimental drug is having any effect. Talk about a race to the finish line! :)