Wednesday, April 1, 2015

A tale of two pities

My old friend multiple myeloma and I crossed paths a couple of times this week.

First, I lost another friend to the disease. She was a sweet woman, mom of friends of ours, and became my own friend in the end. I was able to meet her a couple of times and we were able to talk about multiple myeloma and what a dastardly disease it is. Dolly had it for four years and in the end it just seemed to wear her out. She couldn't get relief from the pain and stay active in any way, so her doctor and family made her as comfortable as possible until she passed away.

The second instance began with someone approaching me in the grocery store and saying, “You must be Jim Arnold.” Now, if you read my column last week, you can see why there might have been a time when I answered that question with greater caution than I do now. When I worked in newspapers, I was never sure whom I may have upset, so I always wanted to get some sense of why they wanted to know.

Ever quick, with handy rejoinders to spare, I would usually ask, “Why do you want to know?” Quick, right? Solid? No doubt. This was usually followed by some disjointed blah, blah, blah and we'd go from there, for good or ill. So, “Are you Jim Arnold?” Maybe. Why do you want to know?

Nowadays, people usually link me to this column and want to talk about that. And, since my picture is run with the piece each week, admitting who I am seems like the only way to go.

As it turns out, it was a friend, a fellow multiple myeloma sufferer. I didn't recognize him because- surprise- we had never actually met, but communicated online and through email. He knew me from the aforementioned photo with the column.

“You must be Jim Arnold. I'm ...”

“Oh, yeah. Great to see you.” I can be pleasant, you know. I can actually, albeit only occasionally, craft the socially correct response in a social situation.

Anyway, there we were in the baking aisle, and we started talking. It was funny to be in the middle of the store, sort of blocking the aisle a little bit, having a conversation with someone. Just like I see people doing in the store all the time. Wow.

I suppose anyone seeing us, and having to maneuver past us to get their items, would assume we were talking sports, probably college basketball, given the time of year. We weren't, though, we were talking about multiple myeloma.

After all, in theory, one shouldn't run into too many people who have it that you can talk with. It affects just 6.1 per 100,000 people in the U.S., and constitutes only 1% of all cancers. We need to take every talking chance we get.

So, there we were, talking about the disease. I had come to know him when he sent me an email about his condition, which had, at the time, just become active. He wondered if I would be willing to talk with him about it, which of course, I was, and did.

Amongst the flour, the chips of many flavors and a wide variety of decorating doo dads, we compared where we were in our treatments. He's part of a trial study comparing, I think, people who have stem cell transplants early in their treatment, as opposed to those who wait until a more conventional time. But, that is his story to tell, or not.

As we stood there, with people walking around us filling their baking needs, we ended up focusing on the crux of the matter: both of us are doing quite well, right now, my other issues not withstanding. But with multiple myeloma, more than with most cancers I would suppose, we know it's going to come back at some point. Yeah, it can go into what we describe as remission, but, since it's incurable, it is, almost by definition, going to come back. What do you do with something like that? Good question.

I initially imagined it would be on my mind constantly. Each month as I went to have blood work done and my bone density treatment applied, I figured I would be worried right up till the moment my blood work results were declared positive.

It hasn't turned out that way. Be it God, my family, my friends, my big brain... I hardly ever think about the outcome, even when I'm having my blood work done. I know. It doesn't seem possible, right? I can't tell you why I'm not consumed by it, I can only tell you that I'm not.

My friend struggles with it much more. Partly, I'm sure, because he hasn't been living with the whole idea as long as I have. His worries now are exactly what I thought my worries would always be. Again, though, that's part of his story to tell. Our bumping into each other in the store, though, brought me back to a place I had been- one where I thought I would still be living, and gave me the chance to consider what has happened.

My friend from the grocery store, my late friend Dolly, all of the other 6.1 per 100,000 and I have to come to grips with multiple myeloma in general, and, perhaps, this aspect of it more than any other. And despite all the support we have, at 3 am., when we are most alone and vulnerable, that's when we need to find something that works... for each of us. I can't do it for them and they can't do it for me.

That's why I have to take advantage of running into friends in the grocery store, or receiving a note or email from someone. What we share at those times makes the darkness at 3 am. less dark, less foreboding. And maybe, just maybe, we can help each other put our strategies in place to come to grips with our sneaky little disease.

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