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
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