Thursday, May 10, 2007

One Year Out

He said I was in my early 40's,
With a lot of life before me,
And a moment came that stopped me on a dime.
I spent most of the next days, lookin' at the x-rays,
Talkin' 'bout the options and talkin' 'bout sweet time.
Asked him when it sank in, that this might really be the real end.
How's it hit ya, when you get that kind of news.
Man what ya do.
--Tim McGraw, Live Like You Were Dyin'

"Ninety percent I'll spend on good times, women and Irish Whiskey. The other ten percent I'll probably waste."
--Tug McGraw (Tim's father), after signing a $400,000.00 free agency contract, circa 1976.


Well the years start coming and they don't stop coming
Fed to the rules and I hit the ground running
Didn't make sense not to live for fun
Your brain gets smart but your head gets dumb

So much to do so much to see
So what's wrong with taking the back streets
You'll never know if you don't go
You'll never shine if you don't glow

Hey now you're an All Star get your game on, go play
Hey now you're a Rock Star get the show on get paid
And all that glitters is gold
Only shooting stars break the mold
--Smash Mouth, "All Star"

365 days under my belt. Since what? Since the diagnoses of lung cancer on May 10, 2006.

To refresh a few of you who have been around since the beginning (and to inform many of those who have not), I was first diagnosed with oligodendroglioma (brain cancer) in late 2002. It is technically not cancer, because it doesn't spread, the problem is that the skull is of limited size, and the "benign" tumor begins pushing the brain into the hard skull, and that causes all sorts of mean and nasty problems. So I had surgery, and my surgeon was able to remove about half of the baseball (6cm *5cm *4cm) sized tumor. The rest had to stay because of its location along the motor strip, which controls the body's ability to speak, and move, etc.

I was encouraged by the radiation oncologists to have the remainder radiated. My surgeon was non-committal. After much research and soul searching, I decided to defer radiation. This is because there is a problem that they have given the rather innocuous sounding name "delayed radiation necrosis" . This essentially means that the radiation itself as opposed to the cancer, rots your brain and kills you. These problems don't show up until 7-10 years down the road, which didn't used to be a problem, because they really weren't able to identify cancer soon enough (i.e. before stage IV) to do much good. Find the cancer radiate, and 9 months later you were dead. Thanks to advances in knowledge, imaging equipment, etc., this is no longer the case. They discovered mine at Stage II(C) maybe early stage III, so I had a decision to make. The radiation oncologists all say, well, we're targeting radiation now, but when you ask them to point you to a study (from any country), and they can't. So I deferred, and we monitored the brain with MRI's and the occasional CAT scan for the next 3 years or so. In late 2005, we were informed that the tumor was growing and it was time to radiate.

I underwent 37 (38?) fractions between January and March 2006, and then started on an oral chemotherapy pill (Temodar) after that. I wasn't doing too bad at this point. Hell, my life expectancy was still between 2013 and 2016, and who knew what scientists might be able to come up with by then?

I had this cough I couldn't shake throughout April, and Melissa insisted that we get it checked out. She thought I had walking pneumonia or something. Isn't that just like women??!! Well, as she was right as it turned out . Lung Cancer. Stage IIIB, maybe stage IV. The hits kept coming. Inoperable. Life expectancy of 12 -18 months. 31 more fractions of radiation. Chemotherapy. when you get down to being a short timer, like I am now, I didn't hear the 12 months part, only the 18 months. I figured, well , so be it, November, 2007. So in June 2006, I took a leave for disability from my job.

Still, after 69 fractions of radiation, and a couple of rounds of chemotherapy, the hits just kept on coming. January 8, 2007, learned of brain cancer metastases. Stereotactic radiation surgery. New drop dead date of July 9, 2007.

And the hits are still coming. May 4, 2007. New metastases. May 8, 2007. Another stereotactic radiosurgery. And here I am. I've still have my friends, my family, my boys, and best of all, Melissa. 60 days. Bet the over. I am alive and kicking.

What you gonna do when things go wrong?
What you gonna do when it all cracks up?
What you gonna do when the Love burns down?
What you gonna do when the flames go up?
Who is gonna come and turn the tide?
What's it gonna take to make a dream survive?
Who's got the touch to calm the storm inside?
Don't say goodbye
Don't say goodbye
In the final seconds who's gonna save you?

Oh, Alive and Kicking
Stay until your love is, love is, Alive and Kicking
Oh, Alive and Kicking
Stay until your love is, love is, Alive and Kicking
--Simple Minds, "Alive and Kicking" (1985)

6 comments:

Anonymous said...

Over the top, over the rainbow, over the curve.... I've been betting the over on you all your life. Why stop now!

the uncle

Anonymous said...

I am betting the over, and I intend to meet you at your little sister's wedding this summer.

Amy from Chicago

Anonymous said...

Thanks for telling your story Tom. I am learning much about life from you. Proud to be your friend.

By the way, no one should know how to spell oligodendroglioma!

Anonymous said...

love you Tom, see you this weekend.
the little sister, who is addressing wedding invitations tonight :)

bertieronbob said...

Hi there. I've just discovered my dad has been diagnosed with oligodendroglioma, so it's interesting and comforting to read someone else's story out there - i'll keep an eye on your progress. Good luck!

Tom Clarke said...

With my birthday and all, I meant to respond to you earlier, but I forgot. (See today's blog for additional excuses). Glad to have you on board. Happy to answer any oligo questions you have; however, the main focus of this blog has kind of shifted to lung cancer and brain mets, since it now appears those things will kill me rather than the oligo.

Tom