Thursday, March 17, 2016

It's National Myeloma Awareness Month

Happy National Myeloma Awareness Month.

No. Wait. That can't be right. Yes, March is National Myeloma Awareness Month, but I don't think it should be noted with a declaration like that.

I can tell you this, and from first hand experience, I think making the nation more aware of myeloma is a terrific thing to do. I know I was clueless right up to the time I found out I had it.

Here's how bad it was: When my family doctor sent me to have a CAT scan as part of my treatment following an attack by ground wasps that left me with 15 stings and sore ribs, the technician, during the pre-scan process, asked a bunch of questions, including, “Do you have multiple myeloma.” I had never heard of it and in what has to be one of, if not the, most ironic remarks in my own personal history, I said to him, “If I don't know what it is, I guess I can't have it.” And the Universe laughed.

He asked, by the way, because the normal dye enhancement used to improve the imaging shouldn't be used with myeloma patients. I'm not sure why, but it has to do, I think, with where the dye settles and how it is apt to throw off subsequent tests. Of course, given what I actually know about it, it could also be because left to its own devices the dye could spell out “Kilroy was here.”

There are times in writing this column, that I start down one road only to end up on another. As I write, if I'm as honest as I can be, things will pop up in my writing that I didn't even know I was thinking about.

In this case, I thought I was going to write about how my eating habits have been impacted by my disease, but...

While searching online for some information regarding dye and multiple myeloma, to try to bring some actual facts into this, I inadvertently misspelled dye as die. Or did I? I still got the types of sites I was looking for, but also these links: how do patients with multiple myeloma die; what is it like to die from multiple myeloma; how does one die from multiple myeloma; death multiple myeloma; dying multiple myeloma.

I don't think this is what was meant by multiple myeloma awareness month. The temptation to click on one, or more, of those things was strong. Way strong. I chose not to. Well, I chose not to... yet.

Why? As always, a good question. I'm sure denial is part of it. Fear? You bet. But there is also the truth that knowing any of what those links could tell me, wouldn't help me deal with the day in, day out struggle that living with multiple myeloma has become. It probably won't shine any light on why I feel so nauseous on so many mornings. And there probably wouldn't be anything on why certain areas hurt like heck some days and not at all on others.

I guess that's what my doctors are for. But they'll be the first to tell you they don't have all the answers because sometimes the answers don't currently exist.

I suppose web sites that focus on cancer, multiple myeloma in particular, could probably help. But I chose not to go on them. Frankly, it makes me feel bad to see so many bright and caring people talking about their disease, about how much they've learned about the disease that is so seriously impacting their lives. They all seem so... earnest.

In comparison, I just sit here and wear my ignorance like so many rags. With this blog, this column, I have the attention of thousands of people that I could inform, educate... enlighten.

Instead, I take pot shots at my multiple myeloma. Information? Give me the Joe Friday- just the facts ma'am. I don't feel bright, or informed and certainly not earnest. I know that in Space, no one can hear you scream, but, tell me, when you hide your head in the sand, does it make a plopping sound?

There is a high likelihood that I will die from multiple myeloma. I don't need the information in those links, or any others like them, to tell me that. But, what the heck, you've got to die of something.

I just can't force myself to take in knowledge that has nothing to do with changing that fact. I'm content with what I know about multiple myeloma and what it is doing to me. I'm glad that the bright, informed and earnest people on the web sites are bright, informed and earnest. I just know that looking at them makes me feel like I should be doing more when the fact is that I'm doing all that I possibly can.


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