Thursday, June 2, 2016

Ups bad, downs good, kappas rule

The story's in the past with nothin' to recall
I've got my life to live and I don't need you at all
The roller coaster ride we took is nearly at an end
I bought my ticket with my tears, that's all I'm gonna spend

The Cyrkle

I had been in this country only a few months and I didn't really know what a roller coaster was. It was sort of like when I took my first spelling test in an English class in this country and was asked to spell sophomore. Spell it? I had to ask what it was, much to the amusement of my classmates especially since we were all in tenth grade at the time.

So, just a few months later, the opportunity came to ride a roller coaster, I wasn't about to ask questions. I mean, this was 1964, so it wasn't much compared to what a roller coaster is today, but still... It was very high and looked scary. Questions might have been good, and I might even have asked one or two despite the sophomore fiasco, but, just a day or two after the spelling test, we had a quiz in health class and were asked to name a poisonous American snake. I knew it was cotton something, but classmates' laughter told me it wasn't cottontail. Oy.

The roller coaster... My friends said I should sit in the very front of the very first car because it would be less scary. Right. That wasn't true and the ride I took explains why the sum total of all the roller coaster rides I have taken in my 67 years is one.

It's ironic, then, that I've been thinking of my experience with cancer as being a roller coaster ride. How would I know, right? One experience does not an apt analogy make. Well, I've never been to Hell, but when people use it as a measure of how hot it is, I get the idea.

I suppose it's egocentric to talk about my cancer as a roller coaster ride. How often have you found yourself in situations where you're on top of things one minute and at the bottom shortly thereafter. I mean, that's life, that's what all the people say, riding high in August...

I hope you'll indulge me, though, in my use of the analogy. It's just so apt. If I were to chart the peaks and valleys of my nearly three years with multiple myeloma, joining the dots would create a pattern that has been typical of roller coasters since the country's first roller coaster ride opened in Coney Island in June of 1884. (I actually looked this up. It went six miles an hour and even I may have been tempted to pony up another nickel to ride it a second time.)

As I've mentioned before, one of the key measurements of the state of my cancer is something called kappa light chain proteins. Since December mine have been going up. The increments have been small, but consistently higher than the month before and, in this case, up is bad.

Let me pause for another bit of irony. In college, I did not pledge a fraternity nor did my academics earn magna cum laude nor summa cum laude status. Greek letters were nowhere to be found, though, as I think I've mentioned here before, I did graduate laude how cum. But I don't think that counts.

And, now, here I am tracking my kappas like my life depends upon it, which I suppose it does,

The last time I was at the clinic, the people who care for me and I were discussing changing my treatment because it wasn't knocking the kappas down. So... roller coaster alert... it came as yet another surprise that my latest blood work shows they actually have gone down. Granted, it was only from 20.5 to 18.3, but still... down is good. Eighteen point three whats? I don't quite know, but like so much of all this, I don't have to. I just need to know that up is bad and down is good and there you are.

So, are we going to change my treatment plan? Don't know. It is having a positive impact, but the chemo leaves me feeling really tired and often nauseous and the question becomes - is the latest impact enough to make feeling ill worth it?

Don't know that either. It's a roller coaster ride for another day, I guess.

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