Treating my cancer is not just about
good doctors, good nurses and support staff, excellent facilities and
the right mix of medicines and procedures. It's also about money,
about cost.
Let me make this perfectly clear: I
have no complaints about what things cost. I look around me when I'm
at either of the facilities that are providing my treatments and I
see how much has been invested in order for me to receive the
terrific care that I do.
Not that we don't bitch about it, which
I suppose is the same as complaining, actually. We do. But it isn't
about the cost, really, it's about what we have to do to meet the
cost. Sheri and I have both been on the phone for hours in the past
few days talking about prescription costs, trying to find lodging for
the four to six weeks Sheri will have to stay in Boston, and so many
other seemingly minor details that each afternoon has ended with us
emotionally overwhelmed and in serious need of naps.
I must confess that I am not now, nor
have I ever been, a details kind of guy. I've been more the “I'm
gonna blow this off because it makes my brain hurt” sort of person.
Since I have generally surrounded myself with excellent people who
have accepted this about me, and taken care of the details for me,
I've had a fair amount of success throughout the years, despite
myself.
This cancer fight, though, is
different. Yes, there are plenty of resources to reach out to for
help; more than I would ever have imagined. But details are where
they live. Forms, paperwork, telephone interviews, questionnaires,
surveys... aaarrrgh. Sheri took care of much of the initial grunt
work, but there's just too much.
I am currently taking 15 medicines, not
counting the chemo for my chromosome deletion and the bone densifier
to repair the damage done by the myeloma. Only the acetaminophen and
St. Joseph's baby aspirin (yeah, I take baby aspirin. Wanna make
something of it?) are non-prescription. We have had to call numerous
sources to try to determine how much each of those medicines will
cost once we switch to Medicare; me in April, Sheri in May. You would
think the answers would be easy to find, we did in what we refer to
as our naïve period.
And none of this is blow off able, or
blow-offable, or blowoffable. (I have editors, known and unknown, who
read this and I have to at least act like style is a passing
concern.) It all matters because this is my life, we're talking
about. Is it overwhelming? You bet.
Is it emotionally difficult? Uh huh. Do we wish it was different?
Every day.
Sheri and I are in
this together. You who are regular readers know this. We have been
since the night my GP told me he thought I had multiple myeloma when
I thought I had suffered minor rib damage. But let's face it, when
people ask us about my cancer, the chromosome deletion, how we are
dealing with it, they don't always know what to say, but the genuine
concern and support they show, spoken or not, is an important part of
this journey.
But the financial
matters have been something we've just been dealing with on our own.
Honestly, who ever wants to hear anyone bitch about money? Not me.
Now,
I realize that I have pretty much blown that approach by blabbing
about it here. But I have always tried to write about what is
happening right now; what twists and turns our journey has taken. The
past few days have been about the financial aspects and they have
truly sucked, but that doesn't diminish its place in this journey.
I watch my wife
make phone call after phone call trying to arrange lodging for
herself, trying to nail down costs for drugs, filling out
applications for grants to help defray expenses, and there are times
I just feel bad for being the cause of all this. I know I know, that
makes no sense. I didn't ask for this. I didn't cause this. But there
you are. Think it I do. Well, doesn't that sound just a little
Yoda-ish?
Like most things
that enter my brain, that thought doesn't stick. Not only does Sheri
never complain (about this), she continually reminds me that we are
working at saving my life, so why wouldn't we work so hard at it?
Well, sure, when you put it that way.
Most of the work
has paid off, by the way. There are details to be completed, but
we'll manage. Sacrifices to be made? Yes. But they are sacrifices we
can make, and willingly. When all is said and done we still end up
with a tremendous amount of gratitude. There are so many people in
our situation who are just lost in this financial swamp. They've
already sacrificed so much, and it isn't enough.
As for Sheri and
I? This situation makes us uncomfortable, with a side order of worry.
But discomfort doesn't kill you and worry doesn't last because it's
exhausting. We don't have to have our friends organize fundraisers
for us. We just need them to continue doing what they've been doing.
Show their love and concern for us every day. Me and Lou Gehrig baby-
the luckiest men on the face of the earth.
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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