Wednesday, February 26, 2014

Sometimes the joy's in the journey; sometimes it's not

You know the best thing about thinking too much? It's... ummm. Well, you can... It lets you... Nothing, actually. Nothing is the best thing about thinking too much.

But as surely as a blind squirrel will occasionally find a nut, sometimes all that thinking can produce a thought that actually works. For example, when I started writing about having cancer, I struggled with how to position what I was doing. I didn't want to talk about following my illness, or my disease; I wanted to write about more than that. I didn't want to use “fight against cancer” because the idea of me fighting cancer suggests more control over the situation than I could ever hope to have.

I settled on “my journey through cancer” and that seems to have been the right choice. It certainly is a journey. At first, the fact that I had cancer didn't mean much; not really. I didn't feel any different, I didn't have to make too many changes to my lifestyle. Yes, I knew I had cancer because my doctors told me so, but “What did it mean?”

I've said before, I imagined you could physically feel the malignant cells chewing their way through your system, like some ersatz Ms. Pacman. Well, no, that wasn't the case.

Even the treatment was not what I'd expected. Yes, I was on chemotherapy, but I took it in pill form. Granted, the instructions that came with the pill said should the capsule spill its contents for some reason, DO NOT touch if with your bare skin. The instructions did not suggest a hazmat suit, but I don't think the manufacturers would object, should you decide to go that route. Also, when I have to order a new supply, I have to go through three different people at three different places, each one asking numerous questions about how I've been taking the drug. The questions are always the same and so are my answers, but “same as the last (expletive deleted) time” is, evidently, not an acceptable answer.

So, that process is annoying, but still, it is not sitting in a chair with an IV dripping into your arm. But wait, there's more.

My first oncologist retired and his replacement- remember it's a journey- deemed me an excellent candidate for a stem cell transplant and who was I to say no?

As the journey continued, my doctors discovered a rare chromosomal disorder called chromosome deletion 17p which has a tremendous impact on how my cancer is treated. I believe it is by the grace of God that the doctors I have working with me are actually well aware of this issue and are confident they know the best way to attack it in order to lengthen the remission I gain from my stem cell trans-plant.

Now, to address the chromosome issue, I do sit in a chair and have chemotherapy presented through an IV, as well as taking the pills.

As for the transplant itself... We can save that for another day. I don't even know how much of it you would find interesting. It involves taking some of my own stem cells, freezing them, subjecting my system to very harsh chemotherapy, then putting my own stem cells back, after defrosting of course. Since my life literally depends on taking care of those stem cells, I guess it's only natural to have had a couple of Far Side moments around it. The comic panel shows a liquid covering the bottom of a refrigerator and two doctors looking at it: “Geez George. I thought it was your turn to make sure the fridge was plugged in!” Tacky, I know. I won't even tell you about any of the others. No reflection on my actual care, since numerous redundancies are built in, and my care team is wonderful. It's just the sort of thing my brain will cook up just for its own amusement.

Even though it doesn't begin in earnest until the middle of April, the transplant looms large in our lives, like the elephant in the room that no one talks about it. Except we do talk about it, constantly. So technically it's just like an elephant in the room; too big a thing in too small a place (my brain). We have so much preparation to be done, arrangements to be made, financial concerns to be addressed... it is... daunting, to say the least.

And here's the thing... I still have time to put a stop to it all. If I say I've changed my mind and don't want the transplant, the entire cottage industry that is Jim Arnold's stem cell transplant shuts down and moves on to the next case.

For better or worse, though, I can't do that; can't even consider it. None of my doctors have talked about... well, bluntly, how much longer I can live with what's wrong. But, one thing everyone agrees on: the stem transplant will extend that time and time equals hope; hope that a cure can be found for multiple myeloma. We'd still have the chromosome deletion to deal with, but without the cancer that becomes a whole different issue.

Anyway, this has been my journey to date. It's like the kid in Family Circus when it shows the route he took to get home and it wanders all over, but it gets him home anyway. That's my journey in a nutshell. It's taken me to places I never thought it would, but the goal remains getting home safe and sound, with my new pony in the yard. A guy can hope, right?

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.”