I’ve committed to racing the 2019 TCS NYC Marathon in support of Autism Speaks. As some of you may know, our grandson Reed was recently diagnosed with autism. I’m determined to do anything within my power to help ensure Reed and all of the other Reeds in this world have the tools and resources needed to live happy, productive, loving, understood, and successful lives. You can help too!
As I continue to add 2019 races, events, and speaking engagements, I thought I would post this for reference. Click the link below and if I can be of any assistance to you or your organization, don’t hesitate to raise your hand!
It’s been nearly 13 years since I was diagnosed with chronic lymphocytic leukemia. Some people would have considered that diagnosis a curse.
I’m not some people.
My disease has opened more doors than it has closed and created more opportunities than it has robbed me of. And while I’ve needed to endure 54 rounds of chemo and countless rounds of steroids over that 13 year stretch, I’m now on a daily targeted therapy drug with zero side effects that is keeping me in remission. The opportunity to connect and work with like minded individuals and organizations over the last 13 years has been a gift.
Last night I was asked to say a few words at a wonderful community Prayer service. Below was the message I delivered .
The Power of Choice
When we first started these prayer services many months ago, as we all know, they were for my brother in law, Lefty Snyder. The intentions quickly grew to include me, Larry Kirk, Bobby DiLullo, Todd Monastero, and many others.
Some of you know my story and why I was added to the prayer list. But many of you don’t. For those of you who don’t know my situation, for almost 13 years I’ve been living with a chronic form of leukemia for which there is no cure – yet.
So for the last 4,718 days we’ve managed it with the goal of keeping it in remission. When it flares up, we treat it.
And over the years that has required 54 rounds of chemotherapy along with countless rounds of steroids to keep me in remission. While they’ve been successful…. those treatments can also be quite toxic.
However, since being added to this prayer list, since you have been praying for me, a newer targeted therapy treatment option has become available to me which I started a few months ago. I have ZERO side effects, it is keeping me 100% in remission, and it is now covered by my health insurance.
I now have a new normal and I thank God and you and your prayers for helping to provide that new normal. For me. And for my family.
One would assume that living with a chronic blood cancer for which there is no cure surely can’t be much fun. And the more typical reaction people have in this situation must be “GOD I wish I never had this stupid disease and everything that goes with it”
The truth is ….. The truth is my disease has opened many more doors than it has closed and created more opportunities than it has taken away. Because of the choices that I made along the way.
While I didn’t have a choice in the diagnosis that I was given, I had many choices in the things I did next. How I reacted, and how I responded to the diagnosis.
Among my choices were the tangibles like running home from chemo treatments, and continuing to race and train for triathlons in and around chemo. As well as getting involved with blood cancer organizations, and being visible and vocal with my journey so I could be a resource for others.
But there were also intangible choices that proved very empowering. Like CHOOSING HOPE. Like CHOOSING PRAYER. And like trying my best not to WORRY about what’s next and focus on being present and being where my feet are at any given moment.
We tend to overwhelm ourselves with all of the “what wases” and all of the “what might bes” of life. And the truth of the matter is the “what is” might not be that bad if we give it a chance.
Those choices have enabled me to view my disease as more of a gift than a burden or a curse.
I would also like to express our sincere gratitude for the outpouring of love, support, and prayers for my wife Mary Grace as she also recovers from brain aneurysm surgery.
And we can thank Lefty for saving her life. It was because of his aneurysm and its hereditary nature that all of his siblings needed to also be screened.
Unfortunately MG had a few that needed attention. But fortunately, we caught them early and were able to treat them before there was a potentially critical situation.
I’m happy to say she is on the mend and getting a little better every day. MG and I have felt your love and our collective prayers for her have been heard.
Before I go, I’d like to leave you with this. And in the spirit of being all inclusive, this is actually a Buddhist saying that’s very fitting for tonight that goes like this…
A happy person is happy, not because everything in his life is right.
A happy person is happy because his attitude towards everything in his life is right.
A happy person is happy because he CHOOSES ….. HAPPINESS.
Thank you and God Bless
I wanted to let you all know that after a fair amount of thought and soul searching, I’ve made the decision to step down as the Eastern Pennsylvania triathlon coach. Over the last 12 and a half years I’ve had the honor and privilege of coaching some of the most amazing people on this planet. And worked alongside some incredible coaches and staffers.
I’ve connected with hundreds of athletes who have raised hundreds of thousands of dollars for the mission and for that I feel very blessed, and thankful. I wish I could shake the hands of everyone I’ve met throughout this journey and say thank you for that opportunity.
I’ve always told people that this gig is so rewarding that I felt like I got back much more than I ever gave. Thank you all for being a part of that.
While I am stepping down as the tri coach, I am in no way turning my back on LLS. I will remain connected and will continue to help and support their efforts wherever I can.
It’s time. And I’m looking forward to turning the page and embracing whatever opportunities and challenges lie ahead.
No doubt I will continue to cross paths with most of you and I look forward to seeing you at the races or on the trails. Until then, train safe, race smart, and don’t forget to thank the volunteers.
Thank you again.
Quick update for those keeping score at home. Today is day 13 on my new daily chemo ibrutinib and I continue to see amazing results with virtually no side effects. I also had my 2 week oncolodoc check in today and he was equally pleased. My blood work is responding exactly as it’s supposed to. (Elevated initially but will normalize). For all intents and purposes my responses are text book perfect. If this is my new normal I couldn’t be happier. The truth is, for 12 years, I may not have known what true normal was. I’ve known what “better” is.
But since my diagnosis, even in remission, there has always been some trace disease within me. If I continue on this path, it gives me new nope for a true new “normal”. A healthier normal. As my doc continued to talk through my status and expected next steps, I interrupted him and asked him to dance with me. He said he would but he still owes me that one. I have a lot of respect for that man and the oncology team that has looked after me and cared for me for 12 years. Of course MG and I did our traditional happy dance in the parking lot.
I don’t need to check in again for two whole months. That’s huge. For now, it’s full speed ahead with my blessed life. A few things to remember; Trust God. Trust science. Be where your feet are. Understand the power of choice. And Don’t forget the chocolate.
My first full week with my new oral chemo had me feeling good enough to jump into the Ocean City New Jersey 10 miler. And I felt beyond great.
It was just a perfect day with much to be thankful for. Especially my wife Mary Grace for always being ….. everything. I could never do what I do or fully be who I am without her love and support. And thanks to the OCNJ Half Marathon 10 Mile Run/ Walk and 5K crew and all the volunteers for another outstanding event.
If I’m now seeing my new normal on ibrutinib, I’m extremely optimistic because this normal is better than what I thought normal was when I thought my old normal was good. Follow that? And who can’t love a well run race that’s 5 miles from home with free parking 20 yards from the start and 50 yards from the finish!!
The race itself is a crazy beautiful one that hugs the Ocean City coastline and boardwalk. It’s quite familiar territory that I run and bike on all the time. It was great racing there, feeling healthy, on such a perfectly picturesque morning.
For over 12 years I’ve lived with chronic lymphocytic leukemia. There is no cure for this chronic blood cancer today. When things go well, you strive to manage the disease and treat it with conventional therapies when symptoms become problematic. Remission is the perpetual goal. And for over 12 years, we’ve done just that. With 54 rounds of conventional chemotherapies and monoclonal antibodies, and countless rounds of high doses of steroids, we’ve kept my leukemia in check, and in remission.
And through all of the treatment and non-treatment, and monitoring, and CT scans, and blood draws, and pet scans, I’ve done my best to live a “normal” life. And for me, normal is characterized by running marathons and competing in triathlons as well as coaching, while enjoying an amazing family, and holding down a full time “real job”. Of course I had some periods of time that may not have been as productive as others, but looking at the big picture, I’ve been blessed in what I’ve been able to accomplish.
My check ins with my oncologist have never too far apart. At a maximum I see him every 3 months to check blood levels. More if something just feels a little “off”. While I’m lucky that I have responded to the various treatment protocols that have been prescribed, these treatments can be toxic and the thought of needing to go through this for the rest of my life does get worrisome at times. Sure, I’m strong and resilient now but years down the road may tell a different story.
I’ve known for a couple of years that we will soon want to explore a different treatment option for me. A better, more effective, and less toxic option. I’ve hoped and I’ve prayed for a better answer. While you won’t hear me speak very publicly about my personal faith or spirituality, that’s not due to a lack of belief. And while you will see me attend formal Church on occasion, you will more often find me having up close and personal conversations with God while on a run, on my bike, while gazing at a calming body of water, or somewhere in quiet meditation. So A friend of mine (who happens to be an oncology nurse) recently reminded me to “Trust the science, and trust the Lord”. And I feel like that’s exactly what I’ve been doing.
Well, soon is now and last week, those prayers may have been answered. Last Saturday I started on a new oral, once a day, chemo pull called Imbruvica (Ibrutinib). We made the decision to treat again because my lymphatic system had again become significantly enlarged. We made the decision to treat with Ibrutinib because it was time for better. I was a little nervous about starting something that I had no history or proven success with. But I was ready. I needed a new solution to more effectively manage my chronic blood cancer.
I am now on day 7 and am happy to report that my side effects are minimal to none. My lymph nodes are drastically decreasing in size and swallowing has been much easier and back to normal. I’ve even been able to run and work out on this drug with virtually no limitations. I’m well aware that 7 days does not a case history make, but I am extremely excited with what I’m seeing (and not seeing) and feeling so far.
More to come and thanks for following my journey.
Trust the science, trust the Lord.
Three Ways to Help
For over 30 years I’ve been tying together endurance sports and charitable giving. 2019 is affording me several opportunities to do more of the same. The links below will take you to the fundraising events I’m currently registered for and the corresponding charities for each event. Any help that you can give would be immensely appreciated. Thank you very much.
1) Love Run Philadelphia – A half marathon on March 31st in partnership with Legacy of Hope and their mission to provide resources and financial aid to Philadelphia area residents impacted by cancer.
2) Big Climb Philly – An epic indoor stair climb of Philadelphia’s FMC Tower on April 13th benefitting The Leukemia & Lymphoma Society. As a 13 year leukemia survivor, this cause and this organization are near and dear to my heart.
3) TCS NYC Marathon – The iconic NYC marathon is a 26.2 mile world class tour of NYC’s five boroughs on November 3rd. This year I’ve committed to raising funds for Autism Speaks in support of my grandson’s recent autism diagnosis.
NO DONATION IS TOO SMALL and EVERY DOLLAR MAKES A DIFFERENCE!
Thank you for considering.