“You're a whole
different person when you're scared.”
Warren Zevon
So. The plot thickens.
I had my consultation with the
oncologist who will be overseeing my stem cell transplant at Boston's
Dana-Farber Institute this week. Since Sheri was still sick, my
friend Bob drove me down and, the doctor was happy to initiate and
teleconference so Sheri could participate. Excellent.
First off, we talked about me as a
candidate for the transplant. It turns out I am an outstanding
candidate for the transplant. Yeah, baby. Best one in my row... as
usual.
Odd thing about the transplant: All the
health professionals I've talked to describe the process in words you
don't usually hear from health professionals- “brutal,”
“arduous,” and I think I heard at least one “horrible.”
Okay. But I'm a Mainer Lite, don't forget. When something is going to
be wicked hard, we call that a good starting point. Besides, the same
professionals all say it's completely worth it and can make a huge
difference in remission time and quality of life.
Right. I'm in. When do we start?
Well, says the doctor, you have a rare
and serious genetic disorder that impacts your multiple myeloma in a
big way that we nee to talk about, My first thought was, “Of course
I do.” My second thought was, 'Roh roh.”
I'm still sitting there thinking that
I'm the best one in my row, so I might have missed part of what he
said. I did not miss “rare,” “serious” or “disorder.”
Normally when I write about the actual heath aspects of my journey, I
don't give a lot of detail. Remember... what I know about human
anatomy I learned from the song “Dem Bones.” Anyway, I need to
live in the solution, not the mess, and what I really need to know is
what will help me do that.
In this case, though, I really was
completely unprepared for a whole new set of issues. Turns out I have
chromosome deletion 17 p. We're really just beginning to deal with
it, but the doctor is fairly sure it was inherited from my parents.
Now, there was a time in my life when I blamed anything and
everything that went wrong in my life on my mother and father. Yeah.
I know. But, that's how it was.
Now that I've moved beyond all that
crap, there's no one to point a finger at to say, “You did this to
me!” Nope. Poop happens and sometimes it happens to you. I do miss
the occasional finger-point though.
Obviously, when you hear something like
this, it takes time to process. I'm usually a pretty quick processor,
but this is taking a bit longer. Its also a complicated issue and my
chemistry skills are not really up to it. Again, I find myself
wishing I'd paid more attention ins school. Hell, I had take
chemistry twice and still barely passed.
So, as far as I can tell, the impact of
this chromosome deletion in cases of multiple myeloma is that it
generally cuts survival rates in half. Also, the stem cell transplant
will still be effective, but the rate of remission will also be
reduced . I think part of the problem is that so few people have this
chromosome deficiency and multiple myeloma, researchers are
hard-pressed to find sufficient data. So my head is wringing and I
country see Sheri, but she was very quiet so I knew her brain was
also working overtime.
But then... But then,,, We got to the
good bits. My DNA includes a broken chromosome that is going to
cause us a lot of pain and very tough time. Fair enough. But my DNA
also has a strong no quit gene, that I think I also got from my
mother. Sheri has the same and I could tell the doctor made three.
The new treatment plan is being
formulated now. First, what we have been doing has been so remarkably
successful, that we continue with most of that. Again, the things I
have read about this say the best treatment is to add a powerful
intravenous chemo, to the mix, along with the chemo pill I've been
taking, which is what we're going to do. There is still an impact to
the transplant, and chances are very good that any remission will not
last as long. However, it should last longer than if I didn't have it
done. Again, sign me up.
Some of the treatments and medicines
I'll be taking are relatively new. The Dana-Farber doctor said that
all of the things we are trying and doing are, basically, to buy us
time. New treatments are in various stages of development, and no one
knows when/if a cure will be found.
I have a tremendous amount of gratitude
around what's happening to me and my family. There's hope, you see.
It isn't false hope, or wishing hope, it's just good old-fashioned
faith of our fathers hope .Give me that, the amazing health
professionals who are working on my behalf, my wife, our three girls
Jennifer, Alison and Kristie, and all of you who have been so
supportive... I'm reminded of a line from “Ghostbusters,” right
after they thought they'd won: “We came, we saw, we kicked its
ass!” Of course, it wasn't quite over and there was a lot more
screaming and crying before it did end. Details, man, details. I'm
looking at the big picture on this one.
As we were wrapping up, the doctor gave
me a hug and said, “Jim...multiple myeloma is incurable in January
of 2014.” That, brothers and sisters, epitomizes the hope I feel as
we head into the latest stage of our journey together.
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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