Wednesday, June 19, 2013

Ignore the Numbers – Fight Like Hell

We all make a lot of decisions based on the numbers and for most things, we have to weigh what the numbers are telling us in order to make informed decisions. Most of those numbers are routine things – how much we can afford, how fast we’re driving, how much time it will take, etc. These things tend to be routine and the consequences for screwing it up aren’t typically a big deal. Then there are other decisions that involve a bit of fuzzy logic. They involve feelings, a lot of unknowns, and probabilities. Those consequences?  Well, they have more oomph to them and screwing them up can cost money, relationships, or in extreme circumstances, your life!

Yeah...this is what it feels like when you get the
heavy diagnosis...and that little gerbil's tachometer
is definitely in the red zone and then...he stops and
spins until the wheel stops.
When a doctor hands down a heavy diagnosis, there are far more questions than answers; there are far more decisions than possibilities; and there are far more feelings than facts. The prognosis for illnesses gets progressively more complicated with the ailment of course; and as the word survival enters the picture, we want numbers. The kicker is that the numbers we really want are the ones that are always the difficult ones to estimate.  After all, everyone is different.  Everyone reacts differently to treatment and comes into that treatment in different condition and with different histories, sensitivities, and attitudes.  There are just a lot of variables that come into play and not even the best doctors can hone the number accurately. It comes down to their past experience, the results of studies that have similar demographics and the art of guessing. It’s not always reassuring, but it’s reality.

When I got my diagnosis and I found out the particular type of leukemia and then the specific stage it was classified, I started researching what my chances of survival were, based on published studies that were broken down by age and race from both the American Cancer Society and the Leukemia Lymphoma Society. They were stark and honestly not very optimistic, but my hematologist was able to factor in a couple of other things that the studies were not: I was in pretty good physical condition when I arrived and my attitude was positive. When I asked for the numbers, they were far better than those published in the ACS and LLS studies. On the other hand, the docs were quick to point out that the transplant docs were in a better position to make that all-important educated guess and a lot was resting on how I responded to the transplant, which is yet to come. Even though I was introduced to some new terms like GVH (graft versus host) disease and TRM (treatment related mortality), I remain optimistic.

It has been almost four months since my diagnosis and as I’m sitting up in a hospital bed with a nurse connecting me with another dose of chemo fun, I’m feeling fine. These consolidation rounds are nothing like my first three weeks as an inpatient during my induction where I have never felt so sick in my life.  I know the chemo is working internally and my body responds like clockwork so far.

The big unknown for me is the transplant.  There’s the waiting, how I’ll respond, how long it will take to recover and so on. Suffice it to say, the unknowns play a huge part in how we respond to the tough words a doctor may give, but I’ve come to realize that despite how we base our routine lives on numbers, this is an instance where numbers be damned, we have to fight like hell for ourselves.

I just finished reading Lance Armstrong’s story of his early years – It’s Not About the Bike – which specifically discussed his battle with cancer as a world class cyclist and then beating the odds and returning to world class status and ultimately winning the Tour de France for the first time. Regardless of what you might think of the man today, the story is compelling and courageous, especially considering the fact that his testicular cancer had spread to his lungs and his brain. He fought a difficult uphill battle with his cancer, but he won.  It wasn’t until the end of the book after winning his first Tour de France where his doctor revealed that his chances of survival were a mere 3%! Perhaps had he known this, he may have given up; or maybe it would have given him even more reason to battle on. That’s another facet of the prognosis the doctor cannot know – our resolve to fight or resign to mortality.

I’ve unwittingly overheard one of those tough conversations about a man’s cancer taking the turn toward terminal and his gracious coming to terms with his inevitable demise; I’ve also made friends with someone who laughs at his own cancer in the face; and I’ve known someone who received an identical diagnosis as his own brother, one of which made his remaining months those of peace and enjoyment and the other going out fighting. And every one of those situations ignored the numbers and fought like hell for themselves.  You see, fighting doesn’t necessarily mean that you seek out the best doctors, the clinical trials when conventional treatment doesn’t work, but it can! 

It all comes out to determining what the best course of action is. It may, in fact, mean doing a lot of footwork to find the right second, third, or fourth opinion to get the right doctor that has the expertise you need…or it may mean fighting with loved ones to let you enjoy your remaining time on this mortal plane with dignity and comfort.  It may mean winning the fight within your mind to find the peace with whatever decision you arrive. Numbers may mean nothing or everything, but ultimately making the decision you can live or die with is the one that gives settles you. And that’s why, my friends, I say, “Ignore the numbers and fight like hell” … for you.

Music for today – Tim McGraw’s Live Like You were Dyin’

He said, “I was in my early forties
With a lot of life before me
When a moment came that stopped me on a dime

I spent most of the next days, looking at the x-rays
Talking ‘bout the options and talking ‘bout sweet times”

I asked him when it sank in
That this might really be the real end
How's it hit 'cha when you get that kind of news?
“Man, what'd ya do?”
He said,

“I went skydiving
I went Rocky Mountain climbing
I went two point seven seconds on a bull named Fu Man Chu
And I loved deeper
And I spoke sweeter
And I gave forgiveness I'd been denyin’ ”

And he said, “Someday I hope you get the chance
To live like you were dyin’ ”

He said, “I was finally the husband
That most the time I wasn't
And I became a friend, a friend would like to have”

”And all of a sudden goin’ fishin’

Wasn't such an imposition
And I went three times that year I lost my dad
Well I, I finally read the good book
And I took a good long hard look
At what I'd do if I could do it all again
And then

“I went skydiving
I went Rocky Mountain climbing
I went two point seven seconds on a bull named Fu Man Chu
And I loved deeper
And I spoke sweeter
And I gave forgiveness I'd been denyin’ ”

And he said, “Someday I hope you get the chance
To live like you were dyin’ ”

Like tomorrow was a gift
And ya got eternity to think about what to do with it
What did you do with it?
What did I do with it?
What would I do with it?

Skydiving
I went Rocky Mountain climbing
I went two point seven seconds on a bull named Fu Man Chu
And I loved deeper
And I spoke sweeter
And I watched an eagle as it was flyin’

And he said, “Someday I hope you get the chance
To live like you were dyin’ ”

To live like you were dyin’
To live like you were dyin’
To live like you were dyin’
To live like you were dyin’