RemissionMan

My perspective on cancer was always that it was something that happened to others. The sick, the elderly. I grew up one of those perfectly healthy kids who played every sport that I could sink my teeth into. I attended college on a soccer scholarship. I hung on the fringe of a pro soccer career and then played semi professionally for a number of years.  I lived clean and healthy.  I did the right things.

So I kind of assumed I of all people should get a free pass on disease like cancer.

I received my calling into the world of endurance sports in 1986 when a friend invited me to do a triathlon with him. I scrambled to borrow a bike. I wore a goalie jersey, baggy nylon sweat pants and a sky diving helmet and was immediately addicted to what I saw on race day. I was drawn in to the world of lycra, funky bike shoes and pedals, cool sunglasses, helmets and …STUFF.

I started gradually racing shorter races but it wasn’t too long before I worked my way up to marathons and eventually ironman triathlons. – And YES, I upgraded my gear along the way. More than a few times. I was healthy. I was happy. And I felt like I was setting good examples of healthy living for my kids who came to so many of my races and crossed so many finish lines with me. My racing buddies often ask if we can clone my wife because they think she is the most supportive being on the planet – and they are right. But no, sorry, we can’t. And part of what made it all work is that we’ve always made races family outings and made it about the whole experience and not just the event.  

That was my lifestyle for 20 years. – And it was a good one.

In 2005 things changed for me and our family. My father underwent major surgery to remove a huge tumor in his plural cavity. He spent 2 months in ICU before we lost him in August. While he was still in the hospital, but stable, I raced Ironman Lake Placid in NY. Obviously I was emotionally torn being away but could do nothing at home either and we felt the distraction of “normalcy” would be good. (If you can call ironman racing normal.) I raced wearing his WWII dog tags but did not have a good day. Something was off. I assumed I was just mentally preoccupied and emotionally drained but I’d later learn there was more to it.  

In December of the same year, my mom underwent triple bypass and aortic valve replacement surgery (successfully). Simply put, it was a bad year and we looked forward to flipping the calendar and a new and fresh start with 2006.

Except… In early 2006 I started having difficulty swallowing. I also started to notice the presence of a couple of enlarged nodes on the back of my neck. We tried a number of things –steroids, antibiotics, allergy meds, but nothing game me any sustained relief.  

Finally I made an appointment with an ear nose and throat doc who instantly ordered a tonsillectomy. This was not exactly not how I wanted to spend my 46^th birthday. And then the waters got murky when I got a call from the surgeon that my pre-admission blood work came back with an elevated white count and I was instructed to consult my oncologist. Now there’s a call you don’t get every day. And that’s not a number one typically has in their contacts, like AAA, or a plumber.

But we got an appointment with a great oncology doctor who then ordered every test and scan imaginable.  Dr asked if I had been getting tired and a few things started making sense like my race in Lake Placid as well as a few other instances I previously chalked up to my lifestyle.

And on February 24^th of 2006 my wife and I sat in the office of an oncologist I had known for all of 7 days and tried to wrap my head around what he was trying to tell me. I had Chronic Lymphocytic Leukemia (“CLL”). This would require several weeks of chemotherapy and then two years of follow up treatments. And even that wouldn’t “cure” the disease.

So a little confused, a little scared, and a little angry, I began the first of 4 one week long rounds of chemotherapy and I of course ran the gamut of every emotion possible. I hit some dark patches. Both physically and emotionally.  But they certainly weren’t all dark.

These patches were cyclical and things got better. My tolerance improved and treatment started showing signs of working. By the 3^rd round my blood counts were slowly returning to normal and I had reached remission.

We made a party out of chemo when we could. We made it an event. My wife, Mary Grace, came to every treatment. My kids occasionally skipped school to come hang out with us and we would often all each lunch together in the chemo suite. And I always needed to try to be the class clown to add a little levity to the situation. But that’s who I am in almost any situation. Oh and I had to be 1^st in line for treatment. Sometimes waiting 20 minutes for them to even open in the morning. On more than one occasion, a nurse would peak through the not yet opened receptionist window and spot me waiting with that “oh no, Steve’s already here” look.

As I reconciled everything that I was experiencing, I made a few key decisions that both kept me sane and at the same time changed my life. One was to practice the simple adage of controlling the things I could control. I couldn’t control the diagnosis. But I could control A LOT of how I reacted to that diagnosis.

Another was remain in motion.  I have learned through the years that I am ALWAYS happiest when I am moving. I’ve never known if I am running towards or away from something, but when I am moving, I am WHOLE.  It is more than just a way to stay in shape. It is how I have always coped and it is  my therapy. So I held onto that and kept up my training through my treatments – often running home from chemo. I made it part of a game. I challenged the disease back and made up some of my own rules of engagement. And that little game was FUN because I was winning.

The combination of good drugs, a smart doc, a good mindset, and a little luck allowed me to remain in some kind of shape and was back to racing sprint triathlons 5 months after my diagnosis and raced an ironman 7 months post diagnosis. I probably could have just as easily retreated and rested, but I needed to move.

The other choice I made was to sign on as a TNT coach and tie all of this together, sharing my passion for triathlon with people who are raising money for blood cancers. My blood cancer. Pretty good gig right?? It’s been a partnership better than words could ever describe.

And that is how I sailed through life from 2006 until …. last summer…

Keep in mind that this is a chronic form of blood cancer that I live with. We can manage it, with the goal of remaining in remission, but there is no true “cure” as we know the word today. If symptoms appear, we address them.

Symptoms appeared last summer and I needed a little treatment. But you can bet, true to form, I stayed in motion and kept racing and training throughout. Last summer I raced a couple of half ironman events in the middle and end of my treatments. Symptoms appeared again a few months ago and as we speak I am in the midst of a series of treatments. BUT, guess what? I am remaining in motion and am timing those treatments between the NYC marathon, Philly, and Yuma Arizona marathons. THAT’S my choice.

So you try your best to live ABOVE and not just WITH this thing which can either be considered a curse or an opportunity depending on perspective – and the choices you make. I’m in a good place. And I am convinced that in my lifetime I will bear witness to my magic pill that will make all of this a thing of the past.

But I won’t lie and pretend every day and every treatment is a day at the beach. All of this can be draining at times.

Two weeks ago I was with 50,000 friends racing the NYC marathon. This past Monday I was sitting in a chemo recliner for 6 hours doing a marathon of a different type with the drug Rituxan. Right now, I feel great. On December 9^th, I’m back in the chemo chair.

Some days you can’t figure out if you want to build a house – or – hibernate.

So I’ve learned a few things in my 25 years of racing and 7 years of living with a chronic leukemia. That equates to 23 full marathons, an ultra marathon in South Africa, 11 ironman triathlons, countless shorter races…. And …46 visits to the chemotherapy suite. Lessons tend to come out of that kind of stuff.

I’ve learned that crappy stuff does happen to good people – But so what. It’s OK because Belief, hope, positive thinking trump that crappy stuff EVERY TIME.

I’ve learned the size of the footprint you leave behind is much more important than the sound of your footsteps. Be proud but be humble with your accomplishments.

I’ve learned that we are nothing without our support teams of friends & loved ones. So even though as athletes and patients we may not always thank those teams enough – we need you.

I’ve also learned that “gifts” come in the oddest shaped packages. This leukemia has in a crazy way been a gift to me. This disease has given me more opportunities than it has taken away.

A few words about your race tomorrow –  

Take it all in and embrace everything the day has to offer. Keep yours eyes wide open for those little gifts. Be sure to thank the volunteers. They work hard to make your dreams come true.

One of the coolest things you can do on race day is take water from the littlest and cutest kid volunteer you can find (and make sure he’s a volunteer and don’t steal some poor kids juice box) and then thank him for making you run faster. It will make YOUR day. But will have a much greater impact on that CHILD.

Tomorrow when people all tell you that you are ALMOST THERE – you aren’t.

When people tell say YOU LOOK GREAT – you probably don’t.

But when people tell you that you are awesome and you ARE going to finish. And that you are beating everyone who didn’t have the courage to start. They are telling you the truth.

I want to leave you with this quote that I saw on the boardwalk in Ocean City.

Life shouldn’t be a journey to the end with the goal of arriving safely in an attractive, well preserved and maintained body with everything in its proper place.

Rather…

Life should be a journey in which you chaotically skid to the finish belly first, and late, with chocolate in one hand, a latte in the other, and a huge smile on your face as you triumphantly scream:    “Now THAT was a GREAT RIDE”!!