So, I would choose to be
with you
That's if the choice were
mine to make
But you can make decisions
too
And you can have this heart
to break
And so it goes, and so it
goes
And you're the only one who
knows
Billy Joel
We...
Sheri, my daughters Jennifer, Alison
and Kristie and son Jason, and friends like not-his-real-name Walter
having been talking a lot lately about quality of life in face of my
new, groundbreaking cancer treatment.
Quality of life is just another one of
those things I totally got wrong at the beginning of my treatments
for multiple myeloma. If you've been with us since the beginning, you
know I've been spectacularly wrong in a lot of my assumptions about
having cancer.
Some were admittedly silly: being able
to sense the cancer cells running around my body like Ms. Pacman
gobbling up whatever it is that Ms. Pacman gobbles up. Some were
probably overoptimistic. I thought my stem cell transplant would have
had a far greater effect that it has done.
The truth is, though, that the
transplant was a game changer. It hammered the myeloma pretty good
and, if not for separate stomach issues, I would have been able to
enjoy a few months' respite.
But the thing with quality of life...
First off, I certainly thought it should be in capital letters- not
all caps, I hate that- but definitely a Capital Q, Small o, Capital
L, Quality of Life!
Big ticket items all around. Bucket
lists, living every day as if it were my last, expressing the love I
have for family and friends in big and important ways EVERY (O.K,
there the caps seemed necessary) day. And perhaps that's the way
it would have been if I had a definite prognosis with a fairly
dependable date of expiration. I mean, if I was told I had six months
to live and optimistically doubled it to nine to 12, I may have felt
more of an urgency to do those things. After all, a prognosis is as
apt to be wrong on the short side as on the long.
But, that hasn't been the case. From
the very get go Sheri and I, and my doctors, both here and in Boston,
have been adamant about the lack of a point in trying to figure out
how long I would have to live with this multiple myeloma. They
pointed out that almost every case of cancer is unique to the person
who has it, and probably even more so with a blood cancer like
multiple myeloma.
So, our considerations of the quality
of life in our case slowly but surely started to shift. For me, at
least it culminated in the past couple of weeks when two wonderful
things made an appearance on our own time line.
First, Sheri and I celebrated our 20th
wedding anniversary. Before we appeared before our family and friends
to exchange our vows in public, our wonderful pastor insisted on
meeting with us privately to go over those vows so we would be
perfectly clear on what it was we were pledging one to another before
God and our friends and family.
“When we're down there,” he told us
(as I recall), “you're going to be so worried about not
embarrassing yourselves, you won't really be aware of what you're
telling one another.” It was a serious moment. I was actually taken
aback with the weight of the decision we had made; the life we would
be entering into. Brothers and Sisters, I had no idea.
In sickness and in health, good times
and bad. Love and support and trust in God. Yeah, 20 years of that
and then some. That decision, and that journey with Sheri, has made
it possible for me to face cancer with the belief that the odds are
in my favor.
The second big event was the initial
results from my new treatment. After having gone up every month since
December (remember up is bad), my kappa light chain protein numbers
not only dropped, but plummeted from 71.2 to 1.01. Whaaaat? Everyone
was shocked, including my primary care doctor up here. Since the
procedure we're going through is so new, and there aren't a lot of
documented results in my clinic, we're not entirely sure what it
means. But, we do know it is wonderful. Amazing!
And this is when the switch in quality
of life in our situation really meant became rock-solid apparent,
once and for all. With two wonderful life events to celebrate, I put
in one of the worst couple of weeks I've had since we began. The new
treatment really knocked me on my butt and left me with very little
energy to enjoy the grand things happening around me.
See, the side effects of treatment are
really more of an issue most of the time, at least in how I feel on a
daily basis, than the cancer itself. And, in the grand scheme of
things, that's what the quality of life comes down to, isn't.
My one constant refrain when talking to
Sheri about this is: I would just like to go to sleep at night, or
during my daily nap, and wake up feeling not ill. Feeling good would
be great, but for me, right now, quality of life comes down to not
feeling ill, and even more so, not feeling so exhausted.
So in the meantime, the treatments
continue and Sheri and I move through our 21st year happy
to be together and sharing the vows our pastor made such a point of
our understanding. Thanks, Bill (his real name).
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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