Archive for August, 2009

Surviving is a Journey

Posted in cancer, Cancer Life, testicular cancer with tags , , , , , , , , , on August 31, 2009 by lawler

*I wrote most of this post a couple of weeks ago. It never felt quite right at the time, so I didn’t post it. But…when is my writing ever quite right?

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Satisfied

Oh, I didn’t die

I should be

satisfied.

I survived

It’s good enough for now

Wilco, “Sky Blue Sky”

I heard these lyrics the other day in the car. I’ve heard them before, of course, but sometimes such things stand out — or we hear them in a way that seems as if they should stand out. Anyway, the sentiment sounded about right. Over the last two years life has taken on a new meaning. When someone (preferably a medical doctor of some kind) tells you that you have cancer, you react in a perfectly natural way, asking and acting on a basic question: how do I survive? No time for splitting hairs over the meaning of life, or what you have to live for, really. You just know you want to live and go about finding the path that will take you to the place where life goes on.

Once you’ve found that place things get complicated again. I’ve spent a lot of words here on this blog and elsewhere espousing all sorts of ideas that cancer has either given me or forced me to consider. And now that I’ve emerged cancer-free (for the second time) I find myself struggling a bit to hang on to the ideals that I discovered were of paramount importance to me when I was sick. [The other day I forgot one of the three things I pledged to accomplish this year — what was it again? Get Healthy, successfully launch Wisconsin Story Project, and…and….oh yes, Live Purposefully–I actually had to look on my own blog to remember that third one. Yikes.]

The thing is that it’s not easy living up to your own ideals once you’ve actually had to say to yourself some version of “this will not kill me, I want to live.” Because saying that — if even to yourself — is the same as saying that there is not only something to live for (that’s easy: love, sex, beer, ice cream, et cetera), but that life itself is embraceable, that it’s not only worth it, but that it’s going to be good, that it’s going to bring happiness and something more valuable than what you’ve found in sickness — comfort, perhaps. Contentment.

What follows is a kind of greed. A demand that things be better than ever, and an inability to overlook the areas of life that bring dissatisfaction or somehow don’t live up to the ideal you settled on while sick and proclaiming life so worth living that you would endure a walk across the surface of the moon barefoot — even if it were paved with broken glass.

I’m sure this is a common ailment with a clinical description. No matter. For practical purposes it is simply another area of life to stare down.

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Prognosis: Negative

[sorry, couldn’t resist a bad Seinfeld reference there]

Recently, in our exploration of adoption, I asked my oncologist here in Madison to write a letter for our dossier that stated whether or not I was healthy enough and had a good enough prognosis to be the adoptive father to a child.

This is, in part, what he wrote:

Letter

Dawn and I looked at this brief letter and asked, in a bit of amazement, “Fifty to seventy percent?!?”

“Those aren’t great numbers,” Dawn said.

I haven’t had a chance to ask Dr. Arbaje about this specifically — frankly, I’m unsure how to do so. “Are you sure you aren’t confusing me with more typical bone marrow/stem cell patients,” I might ask, “like those with Leukemia and Lymphoma?” I will see him again in a few weeks, and plan on asking him.

We now have a letter in hand from Dr. Einhorn. His specific expertise in testicular cancer as well as his familiarity with my “difficult” case (difficult is not my word — it has been used about my cancer by more than one expert) has given us a clearer picture of my ability to be an adoptive father, and a much better prognosis:

Einhorn Letter

Right off the bat, this letter attests to a current cure rate of 80% — already higher than Arbaje’s stats. It goes on to state that as of the first anniversary of my first bone marrow transplant, my cure rate sky rockets to 95%. Am I being defensive? Your gawd damned right I am. I have put my trust in the hands of medical professionals to a great degree over the last two years, and I have a funny feeling that one of those people didn’t do his homework. That bothers me.

Perhaps needless to say, this is the letter we have passed on to the adoption folks.

When we asked Dr. Arbaje earlier this month (in person) what he thought of our interest in adoption he said a few things and then asked Dawn point blank, “Are you prepared to be a single mother?”

We were stunned. We have always had the utmost respect and admiration for Dr. Arbaje, but recently feel as though he has lost some of his ability to properly filter. Although we have appreciated his frankness in the past, the latest information coming from him regarding adoption seems overly pessimistic. Is he trying to protect us? Does he believe that we are too optimistic or are simply unprepared for parenthood?

Okay, so how do I wrap this all up? I should be working on a paying writing gig as I finish this up, so why don’t we end on a…

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Happy Note

Wisconsin Story Project and our Cancer Stories production are moving assuredly along. We have tentatively reserved performance dates for May 2010, and I will keep everyone posted on exact performance dates and times very soon! We also hope to have an art exhibit up in the Overture Center that is tied into Cancer Stories that will run much longer…keep you posted on that too. Thank you to everyone who has supported WSP and Cancer Stories in anyway — and if you haven’t shown your support, there is still plenty of time! Go to wisconsinstory.org and have a look around — find out about the company, Cancer Stories, our upcoming podcast series, and check us out on Facebook and Twitter while you’re at it!

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