Thursday, July 24, 2014

But I don't want to have to learn this stuff again

This whole... having cancer... is a tricky business, partly because it wont stay where you put it.

Some days, you wake up and feel like everything's good. The discomfort overnight was certainly manageable and a good night's sleep helps deal with the challenges. You put your cancer in the hopeful drawer.

A couple of days later, you feel crappy. Sheri asks for specifics- physical pain? Mental challenges? And you don't know. Some of each, usually. Put it in the days to be endured drawer.

The mental challenges of living with an incurable cancer, 24/7. can be severe and I don't like to give them any more time in the fresh air than is strictly necessary. They don't play well with others and they can easily wreak havoc on your overall well being. Put them in the later gator drawer.

But, no matter what I want to do- where I want to put things- there's always the whack-a-mole factor. You've played the game at carnivals and fairs, right? You get a mallet, and the playing field is made up of holes out of which moles pop at varying times. The idea is to hit the mole and get it back in its hole. Fair enough. But when you do, one pops up from somewhere else.

For me, cancer has been like that too. As soon as you think you've whacked all the moles there are, that NOW you can start focusing on improving your health, there's more whacking to be done.

I've long thought the only way to win at whack-a-mole is to unplug the game. Unfortunately, the deluxe, special cancer edition whack-a-mole does not allow that strategy. Too bad, so sad.

So, you leave the thing plugged in, take an occasional whack, and try to ignore it the rest of the time. I have enough to do, frankly, trying to walk the line between hope and denial, to give it too much attention. The drawers are there, the whack-a-mole is there, the walk is there. Deal with it.

But here's the thing: lessons I learned back at the end of last year and the beginning of this are having to be relearned. For the longest time, we've known exactly what the course was- follow the treatment plan, take the pills, endure the bone densifier, sit through the chemo, have the transplant, get home and begin a long recuperation period. Got it. Can do.

But now this new thing has come up, popped up if you will. I have these pains in my abdomen that just won't go away. I've had many different kinds of tests done, and all we know is what it isn't. Don't get me wrong, that's good. My major organs seem to be unaffected, my blood work is good and so on. The obvious things we might have to worry about, we don't. So what's up, doc?

Now, how big a deal is this? I do not know. And that's part of the worry. My doctors aren't exactly sure either. We've done all these major tests, and now we are starting to look at things that seem less likely, but still have to be addressed.

There's the chance that my new stem cells are causing some sort of irritation in my system, thus creating the pain. By the way, if you haven't noticed, what I write should in no way be considered medically correct, or in fact accurate, even if it concerns my own health. Sheri and I both listen during appointments because there are things she doesn't want to hear and there are things I don't want to hear and between us, we usually get it right. Still, we hear what we hear.

Anyway, the current treatment means heavy doses of steroids on a sliding scale: four days at 100 mg per, two days at 60 per, and so on. Most of you know steroids cause me all sorts of side issues, but, at the same time, they also seem to do a good job settling whatever it is we aim them at. Once that treatment's done, I guess we take another look, poke, prod, and see where we are.

The thing is, of course, that this could all be nothing; a mere bump in the road that I've managed to make into one of the cavernous potholes you find around here in the spring. If so, good for me.

In a couple of days we'll be checking my cancer for the first time in a long time. The process has been focused on my transplant and recovery from that, and we haven't, because of the nature of the beast, been able to even look at what the cancer is up to. We assume it is in remission, but we do not know. We should find out then.

You'd think that would be my focus right now- finding out where we are with the disease that started it all. But here's the other thing: I know about my cancer. I have lived with it and been aware of it and absolutely aware of what it is and how we are treating it. It's a known.

This other thing... this unknown. I don't know how to fight what I can't put a name to. Man, this sure seems like a huge pile of manure I'm working my way through.

There are a variety of versions of the story that gives this blog its name. The pony is the constant in all of them. A man is on his way to a party when he comes across a young boy shoveling ass over tea kettle at an enormous mountain of manure. The man asks the child if he wouldn't rather go with him to the party than shovel all that poop. The kid says, “No way man. With all that poop... there must be a pony in there somewhere.”