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Friday, March 9, 2018

Gonna Roll the Bones

...on my part I will venture all my winnings 
of tonight,
and throw in the world 
and everything in it 
for a side bet. 
You will wager your life, 
and on the side your soul. 
You to roll the dice. 
What's your pleasure?

-- the Big Gambler

"It's a bet," 
he said.

It's funny how one person's idea can lead you to another, then another, then finally something you incorporate into your own life. I've always been a big fan of the rock band Rush. One of their songs, Roll the Bones, is loosely based on this short story Gonna Roll the Bones by Fritz Leiber. It basically tells the tale of a washed up gambler, weary of his mundane life, heading to the local gambling establishment and taking on The Big Gambler himself in a game of craps (bones, dice).

I encourage you to take a bit of time and read it through.

I'm not a gambler, but deciding how (and if) to treat a cancer diagnosis can be a gamble. As much as we like to think Western Medicine has wrestled all the Big Problems down, it has not. Sometimes there are no clear directions, but only past events which can be summarized in statistical studies and converted into treatment protocols.

While I don't see a better way to do it, it's not always conclusive or instructive (prescriptive) when considering what to do next.

I had a friend who said, 
"That's why they call it practicing medicine."

What Decision?

You may ask, "what decision is there to make? Of course you do the treatments so long as the doctors recommend it, right?"

What goes into this decision? For me, to continue "maintenance" therapy consists of an every-two-weeks trip to the oncologist for a shot in the stomach. It's not so much the associated blood draw or the actual shot in the stomach that's so difficult any more. It's the side effects of the shot in the stomach that wear me down.

The stuff they inject me with is nasty. It often leaves a nasty bruise; plus it has other side effects. The side effects can vary (surprisingly) shot-to-shot. Sometimes I get "flu like" symptoms; other times I'm just plain tired. The one major constant is, however: worsening neuropathy. What is "neuropathy"? It's damage to nerve endings, primary in the hands and feet, but it can also affect, say, your digestive system or other areas. The drug I'm taking is "neuro-toxic". It's not "supposed" to contribute to worsening neuropathy (and I'm sure this is in the pamphlet or TV commercial), but it's wrong.

I've been taking this drug in this fashion pretty much since early 2015. They gave me this drug upon my first diagnosis back in May 2014, but in considerably higher doses via IV.

The problem is this neuropathy is a constant painful nuisance. It's actually more than a nuisance, it can keep me up at night, makes it difficult to walk. I take medicine for it, but it's not enough. It feels like my feet are asleep constantly, but on the verge of waking up, when the pins and needles and ache comes in. All the time. It's exhausting.

The other side effect is on my gut, my digestion. It slows it to a crawl or makes me really irregular. It's too-much-information, but I used to be extremely regular. I have more medicine(s) I take for this, but I can tell you: you don't want to take them. Let's just say it's also a painful nuisance.

And so that's the decision:

when does quality of life deteriorate 
enough to risk quantity (or lack) of life 
by skipping out on the treatment?

It's easy to tell someone else to continue, because you don't share their pain or context, you just want them to live. From my perspective, I certainly do not want to expire, but I also do not want to suffer every minute of whatever life-span I have left. I'm not here to be propped up so people can look at me, see that "I look good" and continue on the way.

The Game Table

This is one of those decisions you don't want to make, and believe me: the physicians will not (can not) make this for you, either, so in the end I'm in a familiar position: on my own. Forget the dialysis end of things, which has it's own large set of painful nuisances, too, and only think about the Big Cancer Ones.

For one thing I'd like to know if the "maintenance" chemo is actually doing anything. Strangely, this question can't be answered. It's just not known if remission is continued because of the maintenance or it just continues on its own. It's this not knowing that makes it difficult to know what to do.

The question is: if I can't take the side-effects any longer, do I (can I) stop the treatment? Always the doctors (and family and friends) recommend continued treatment, because "the data" shows it's better. Even though they can't say one way or another, in your particular case, the one case that actually matters to you, what will happen. Nor can they say the medicine is the actual reason my remission is holding.

How long can you stand in the fire
even while others encourage you to do so

Now you're rolling the bones. This is one decision you can't get wrong because it can kill you. Are you ready to take the Big Dive into the Cosmic Craps Table? Not to seem too dramatic, but that's a gist of it. The other problem is, if I relapse, certainly I will be off the kidney transplant list, and my quality of life will degrade more, possibly til the end.

So, what to do? Get out there and rock. And roll the bones. But it's not so easy, is it?