Saturday, March 31, 2012

Bucket List...? Geek Please



On the 26th of February, 2012 I was initially diagnosed with Stage 4 cancer of the Larynx.

Diane was told to take me home and make me as comfortable as possible until the end...and that end would probably be soon.

I wasn't surprised.  In fact, I knew what it was before the first test was taken.  After Diane demanded a second opinion from and Oncologist instead of an ENT specialist, things changed.

The only thing that did surprise me is that after it was MRI'ed, CT Scanned and x-rayed a second time, it was downgraded to stage III and had not involved itself via lymph nodes nor had it spread, despite its advanced stage.  Lungs, bones, brain, pancreas, liver, kidneys, and testes were all clear.  No metastasis as far as the testing could see.

So I caught a break...but here is how I dealt with "the talk" between myself and my Oncologist.

I knew when he walked in with clipboard, that I was going to be given the prognosis and treatment plan.  Many of you know that I've seen and heard this before.  Before he could start, I held up my hand and told him what was on my mind.

"Dr, I know you have information on my condition and probably a prognosis.  I don't want percentages, I don't want the expiration date if there is one.  I simply want to know if I have an even-money chance of beating this thing.  All I need is a yes or no answer."

He looked at me for a full 15 seconds before he answered.

"Yes Mr. Starks, you do."

And that's all I needed to hear.

I did not want mental or psychological limitations put on this fight.  I didn't need any restrictions on my recovery.  I just wanted a 50/50 shot.

I wanted a fighting chance of beating this thing.  And now I have exactly that.

Funny though....the way some people change in the way they treat or approach you once they find out you have cancer.  Sometimes it's barely perceivable...sometimes it's an overt and almost painful change...sometimes it manifests itself as pity, sometimes even anger.

"How can you do this to me....I need you."

And that's actually an honest reaction because in my case, this is a self-inflicted wound.  Too many years of smoking, drinking and not taking care of myself.  Never thinking that there are people counting on me...counting on me to be there for graduations, marriages and births...their life.

Selfish.  I was selfish.

And still through it all, there are a surprising many that did not judge.  And really, what does that accomplish in the long run?

Guilt?  remorse?

I have plenty of that and then some.

What took me by surprise mostly were the comments, emails and phone calls that took a particular bend.  I will paste a couple small excerpts from the correspondence received....you will get the picture.

"Ken, listen.  I know you have every expectation of beating this thing, and so do I.  but if, God forbid, things go wrong, well, what is it you want to do?  I mean, I know that sounds morbid but just think about it and let me know.  I love you man..."

Well, I guess I love you too but I'll reserve the final "love you too" until I can find out which anonymous you are.  ;-).

Hey Ken, I don't want this to sound like it came out of the movie "The Bucket List" but if there were anything you ever wanted to do because you were too busy with HeliOS or just could not do for any reason, what would that thing be...?"

I don't know...I've really never thought about it in those terms.  I mean, to be honest here, screw a "bucket list".  I have no intention of approaching my illness and recovery shaded in that expectation or outcome.

What has driven my thoughts and energies is getting The HeliOS Project back on track and putting computers into the hands of those that need them most.  I mean, that IS my life.

The combination of the disease, the radiation treatments and the chemotherapy haven't exactly been conducive to getting this done.  Fact is, it's kicking my ass.

Diane read some of the emails that took on this particular flavor and posed the question herself.

And surprisingly, once I actually thought about it, it came to me without effort.

See, I am an ex-player, a fan and a student of the game of Baseball.  It is the one real passion I have outside of my work.  I was a catcher from the moment I walked onto my first little league field up until my short-lived but glory-filled days in college.

I've felt the sting of too-tight shin pads, the impact of a foul tip smashing itself into my mask, the blinding pain of a broken thumb when I tried to smother a slider-gone-bad, and the thrill of facing a player barreling down the third base line and all that stood between him and a one run lead was me....all 140 pounds of me, crouching between them.  Some I won... most others I got splattered like a kitten facing a speeding 18 wheeler.

And I experienced the absolute triumph of throwing out a season-high 58 percent of the idiots trying to steal second base on my watch.  I had a devastating move to 2nd and I could smell a suicide squeeze coming from a mile away....

well, 90 feet away to be exact.

I have a dear friend of mine that shares my passion.  We don't exactly share much else. Our political beliefs could not be more polarized and our individual baseball teams are miles apart, and not just geographically.

It's our shared love of FOSS, Linux and community that makes all those other differences between us make absolutely no difference at all.

See, his team, the San Francisco Giants are the 2010 World Series Champs.  They had a Cinderella season while my guys, the Houston Astros, well.....they sucked all season....and there seems no relief in sight for said suckage for several seasons to come.

But none the less, they are my team.  They are my boiiiyyyyys.

So what....what is it I would like?  I don't know that it could ever happen, but if I could have one thing that I probably could not achieve myself, I would want the opportunity to attend a three game series between the Giants and the Astros with my friend Larry here in Houston on the 28th of August.

It was just a month ago that I was initially told I would be dead by then.

Unfortunately, I cannot travel far due to having a trach tube....my friend Larry Cafiero would have to travel here.

Late but important edit:  I completely blind-sided my friend Larry with this and did not mention it to him prior to publishing it and the last thing I want to do is put a good friend on the spot.  He isn't involved in this in any way except in being a victim of potentially having to sit with me through three ballgames in Houston.  My apologies if I've caused him any discomfort. 

But you asked...and that is what I would like to happen.  It would probably cost at least 500 bucks and by that time, I might have the money and be able to make it happen.

I will more than certainly let you know if I am able..

No Disneyland, no exotic trips to India or the Mayan Ruins.....not even a ride in a NASCAR at Daytona.

Just a few days in the sun, watching baseball with a good friend.

So anyway, there it is....that is the entire contents of my "bucket list".  Pretty sad huh?

For what it's worth.

Ken