In September 2004, after ignoring an annoying throat for months and attributing it to way too much time on planes doing the corporate law gig, I was diagnosed with Stage IV squamos cell carcinoma of the head and neck. The tumor started in my left tonsil and the cancer wrapped itself around the palate and jumped over to the right side eventually circling around the jugulars and carotids and taking a ride through the lymph nodes. The treatments were brutal. I received chemo and radiation for five months, lost seventy-five pounds, lost my hair, had feeding tubes and TPN infusions hanging out of me, and quickly tired of the constant nausea and the mucositis and sores that stretched from my lips to my colon. My neck was raw and singed from the radiation (like overcooked microwave popcorn that gets tossed away) and I could no longer swallow. At one point, after a long and particularly brutal chemo session in which I went into anaphylactic shock, I actually gave up. I figured – what was done, was done. My wife, who had been driving me to my radiation session with the reckless abandon of a NYC cab driver while pleading on her cell phone for the radiologists to stay late as she battled particularly suffocating NYC rush-hour traffic, pulled the car over and yelled at me as if I was five years old and had just asked how long the ride was going to be because I had forgotten to use the restroom before we left. She said it was no longer about me – it was about all the people that were dropping off meals at our front door, the people that were leaving religious relics and prayer cards in our mailbox, the people that were lighting candles and saying prayers for us around the world, the people that were shuttling our three kids to school and to their sports and music activities, and the third grade class that had committed to eating broccoli once a week as a sacrifice in my name. She was right – it was about them. She is always right. So, I went to radiation where I swallowed my own vomit for fifty minutes while clamped to the table under my Hannibal Lecter-like chemo mask with thoughts of brave (yet squirming) third graders eating broccoli filling my head.
I’m told there was no medical explanation for my surviving that battle, but I did. After all the surgeries and treatments, I lost much of the shape to my neck as well as my jugular veins (I’d be great in a knife fight). More difficult than the physical challenges I faced post-treatment, were the mental challenges. I had so many questions. What was next for me, I wasn’t sure. Was I supposed to just suck it up and go back to work? Join a commune? Become born-again? What did it all mean? Where was I going? I had no idea.
When I was in the hospital during treatments, I spent a lot of time trying to figure out why things happen. All I figured out was I wasted a lot of time trying to figure out why things happen. Also, as I lay in the hospital bed I would hear the families of the cancer patients crying – either around my bed, the next bed or down the hall. They were crying for elderly people that were far too tired to keep battling. They were crying for young mothers that were far too young to be battling for their kids. They were crying for children that were far too innocent to be battling for their lives. The patients didn’t cry during the day in public. I’d hear them after visiting hours were over. They (really, we) cried in silence – long and hard. When we were home, we’d cry alone. But we’d never let the families hear us – we’d stop when the families came back. No one tells you how to deal with that. You quickly realize that you weren’t supposed to survive and the medical community, miracle-workers that they can be, don’t know what to do with you post-treatment. It’s kind of like when your parents pat you on the back and put you on the school bus for the first time in kindergarten – after all your parents’ obsessive research about buying the safest car with air bags and child safety seats, the bus pulls up with some Ted Nugent lookalike contest winner at the wheel and the last time anyone used a seat belt on the bus was probably when they were tested at the factory. Your parents just sort of stand there half-smirking while giving you one of those Queen Elizabeth type waves as you drive off with your nose pressed to the window realizing quickly what prison bus rides to Sing Sing must sound and smell like. Your parents have no idea if you’ll be ok, but what else are they supposed to do – home school you until you’re twenty-two? Same with the medical community – post-treatment you get the “atta boy” pat on the back and you’re out the door with a subscription offer to CURE magazine and a reminder to take two Aleve and call if there are any problems – despite the fact you’re in a daze and have no idea what the hell you’re doing.
The only advice I received post-treatment was from one of my surgeons who said, “You have a beautiful family and a beautiful life. Now go live it.” Easy for him to say – he probably still had both of his jugulars, the skin on his neck didn’t look like some Thanksgiving kitchen disaster where the turkey got way overcooked, and he probably didn’t suffer horrific neck and esophageal spasms every time he swallowed food. What the hell did “living” mean anymore? I had no idea. But slowly over the next few months and years, with my family, friends and faith at my side, I did just that – I got back to living. Running helped me leave dying behind.
On and off throughout my life, I have been “running” from something. Not sure why I’ve been given this lot in life, but I have a theory about my “running” and my life and where it takes me: I run down the path in front of me because that’s God’s plan. I run without slowing down. If I’m slowing down, I’m not running. If I’m not running, I’m catching up to all that is chasing me. If I’m running, I’m not stopping for directions or reading any signs. I don’t want to know what they mean or where I’m going anyway. If I’m running, I’m not stopping at any of those free water stations either where Good Samaritans stand there in the elements and offer sustenance. The need for sustenance makes me weak. I don’t mind being vulnerable – in fact, I welcome it – but I hate being weak. Sometimes I run in groups, but if I’m running in a group, I’m not running, we are. So I leave the group when we approach a fork in the path. Then it’s just me running again. Running down no particular path other than the one in front of me. But I’m taking notes as I run, otherwise I’m doomed to keep turning left. You can’t keep turning left (hint – you run in circles if you do).
Fast-forward to August 2011 – my wife, three kids and I entered a 5-K run on the eastern part of Long Island to help raise awareness for some beach-related environmental issues. My wife and kids all run – the kids do so competitively for their respective schools – my wife does it for the peace (mainly from me). This day was supposed to be a “fun run” for our family – despite the knowledge that once the gun sounded all pleasantries would be tossed aside and we would aggressively elbow each other for position and compete to see who would have the fastest time. A funny thing happened on the way to the finish line, though…. Soon after the race started, I was gassed and couldn’t run up the first hill. In fact, I couldn’t run much at all. I finished last in our family and even lost to kids no older than thirteen years of age that ran part of the race backwards. I’m no Frank Shorter by any means and my wife and kids are really good runners, but we all knew something was up. It sure was – late stage non-small cell squamos cell carcinoma lung cancer is what was up. I had a very large tumor in my left lung that was in a bad spot, had spread to the trachea and was pressing on my pulmonary artery. The cancer had also spread to the surrounding lymph nodes and outlying areas. After completing chemo sensitivity and resistance assays, the doctors surmised it was a twin primary tumor from eight years ago that somehow hid itself, survived the prior treatments and was now rearing its ugly head. That’s the funny thing about cancer – it hides until it’s ready to come out and once it does, it’s often at an advanced stage, especially with lung cancer. Surgery was not an option for me because it was too dicey. Four months of chemo and radiation ensued. But I never gave up running. Running was my coping mechanism. Running was my escape. Running was my way to keep going as I was going through hell (to borrow a battle cry from Winston Churchill). Running was my way to get back to living again. Running was my way of leaving dying behind again.
As a result of the disease and related oh-so-enjoyable treatments and surgeries, I have now lost most of my left lung and am learning to live life in NYC on one lung (i.e., by less audibly bemoaning each new horrible Knick signing and Mets loss as well as each new Michael Bloomberg pedestrian mall and ban on personal vices). And, I’m still running.
Throughout this most recent part of my journey, I needed a focus. I needed to turn the conversation from sickness to health, from worse to better. I needed a new path to run down. I needed a challenge I could control – instead of the cancer, the treatments and the doctors being in control. I needed to get back to living again. And, I needed it to involve running. Everest? No – I’ve never heard of anyone running up Everest, let alone on one lung. Running with the bulls? No – I’ve been gored enough by my surgeons and I run to get a seat on a train and fight for walking lanes on sidewalks every day with NYC commuters, who are much more threatening than any bull. What then? I’m a New Yorker. There’s nothing bigger or more challenging or more majestic than NYC itself. And, there’s no better way to conquer NYC than by competing in the streets among the people. The ING NYC Marathon would give me the opportunity to do just that. I’m was in. I’m was all in.
A funny thing happened on the way to the Marathon, though…my wife pulled the car over again. After my doctors approved my running in the Marathon, my wife said it couldn’t be about me. It had to be about something else. That something else became the LUNGevity Foundation.
The LUNGevity Foundation and its mission to “have a meaningful and immediate impact on improving lung cancer survival rates, ensure a higher quality of life for lung cancer patients, and provide a community for those impacted by lung cancer” connected with me. So did Tom Labrecque’s story from the “Run as One” movement. Running the Marathon under the banner of the LUNGevity Foundation and the Run as One movement would allow me to honor those that have fought the fight before me and to raise funds for lung cancer research. There’s no reason people shouldn’t learn from my journey. There’s also no reason for those battling medical challenges to spend their time as if they were a living portrait of Emmett Kelly with sadness dripping from their veins and darkness lining the tracks of their tears.
In addition, anyone that sponsors me and donates to the LUNGevity Foundation will have his or her name written on the shirt I wear while running in the Marathon. After riding their backs for the past eight years, it’s time I carried them on my back (well, their names anyway). And, carry them I will – all 26.2 miles to the finish line.
So train every day I will. No jugulars. One lung. Another round of aggressive chemo that will last through December 2012. No sweat. I don’t worry about death. I don’t worry about how much time I have left. I don’t worry about being in control of that time. I just live. Oh, how I live. And, I’m going to enjoy the walk as I begin the run down the path – wherever it takes me. I finally found my path – it’s the one to mindfulness and grace. It took a long time, but I know I’m there. And, I have plenty of sustenance for the journey – a lifetime full of faith, love, music, dance, red wine, black and white images, sunsets and wet sand.
I still got this.
To support Jack’s efforts please click here http://events.lungevity.org/site/TR/2012TeamRaiser/General?px=1705406&pg=personal&fr_id=3520