Team Relentless Hope

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.

Please help me continue to help others by supporting the efforts of Legacy of Hope. No donation is too small and every dollar has meaning. Thank you.

TRH Logo

Posted in cancer, charity | Tagged , | Leave a comment

The Power of Choice

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

Posted in cancer, health & fitness, motivation | Tagged , | Comments closed

Coming in 2019… Stay Tuned…

Steve loH

TRH Logo

LoH Love Run

Posted in cancer, charity, running, survivor | Comments closed

Dear Extended Team in Training Family

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.

Posted in coaching, health & fitness | Tagged , , , | Comments closed

Dance with Me

steve and mgQuick 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.

Posted in cancer, health & fitness | Tagged , , , , , , , , , , | Comments closed

OCNJ 10 Miler & Ibrutinib

OCNJ 10 MilerMy 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.

Posted in cancer, running | Tagged , , , , , , , , | Comments closed

Hope, Belief, Trust, and Science

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.

Posted in cancer, health & fitness, motivation | Tagged , , , , , , , , , | Comments closed

Day 5 with Ibrutinib

Well, I am most ecstatic to give this update on what is now day 5 of my new chemo drug, Ibrutinib. While proven to be quite effective, there are a number of possible side effects associated with this drug. The keyword for me so far is “possible” because I have felt little to zero side effects at all since taking my first dose. If I had to reach for something, I would say maybe there has been some mild and occasional tiredness which in reality I could chalk up to simply  living life.

Lymph nodes are shrinking significantly and I generally feel really good. In fact, on my 2nd day I went out for what ended up being a pretty strong 5 mile run along Philadelphia’s Forbidden Drive. And it was one of my best runs in a while.

The real test will be in the coming weeks because today, I am also starting to taper off of a high dose round of steroids. Next week, I’ll be completely off of the steroids and it will just be me and Ibrutinib. The fact remains though that I’m experiencing no negative side effects from the new drug, and that has us all pretty happy!

Stay tuned.

Posted in cancer, survivor | Tagged , , , , , , | Comments closed

A New Chapter

D4DEFFB7-2F8D-445D-83C8-B2849174CD25For 12 years I’ve managed my CLL by reacting to flare ups and relapses with periodic chemo treatments using drugs like Bendeka, Fludara, and Rituxan, and megadoses of steroids like Decadron, Prednidone. That accounted for 54 rounds of toxic chemo and God only knows how many steroid cycles over those 12 years.

I experienced another flare up this week which has led us to the decision to move onto a wonder drug called ibrutinib. A once a day pill which I’ll need to take “forever” ( or until new research dictates otherwise). This drug will essentially allow me to manage this disease preventatively rather than waiting for a relapse to then treat. Ibrutinib  has been phenomenally successful with CLL patients and while my jury is still out, the side effects are expected to be minimal and manageable.


And it comes as no surprise that funding for ibrutinib’s research on CLL applicability was provided by The Leukemia & Lymphoma Society. I don’t want to hit the  celebration button yet as this stuff now needs to do what it’s supposed to do, and I need to tolerate it. But if this works, it’s the end of conventional toxic chemo and infusion as I’ve known it. And if this works, a lot of prayers were answered this week.

So I now take my chemo “to go” and in the comfort of my own home. It’s a good day. But then again, they’re all good days. That’s a choice we can make and I choose good.

#cll #chroniclymphocyticleukemia #lls #leukemia&lymphomasociety #tnt #ibrutinib #imbruvica # janssenpharmaceuticals #survivor #relentless #somedayistoday

Posted in cancer, health & fitness, leukemia & lymphoma society | Tagged , , , , , , , , | Comments closed

September Updates!

Many apologies for dropping the ball on blog updates. I have been extremely active on social media and if you’ve been following along you know that a lot has been happening in Camp RemissionMan. I promise to get back in the habit of posting ad updating to all platforms going forward! There is so much to catch you up on as life is happening full steam ahead but let me just give you a handful of quick updates to make sure you haven’t missed too much.

Most importantly, we celebrated the birth of our 4th grandchild in July. Wallace Daniel Warner is a happy, healthy little boy who instantly stole our hearts. He is also the mellowest baby I’ve ever met. (A.K.A Mr. Chill or Zen baby).

In August I had a couple of opportunities to address audiences at my place of employment on Maintaining Positivity Through Adversity. While I’ve given similar talks to other audiences many times, this was the first time I’ve done so at work. There was a certain sense of raw vulnerability in sharing things with people who you see every day in the work place. They were well received though and another one has been scheduled for October with talks of doing even more.

In September we enjoyed another epic vacation in Lake Placid where I also raced the Lake Placid Ironman 70.3 with friends. It was a great time, enjoyed with the people who matter most.

Training also continues for the Philadelphia Marathon in November. This will be career marathon number 27! I laugh every time I think about the conversation I had with my wife in 1993 about doing “one” marathon…. Just to “get it out of my system”. Fortunately, it’s never left my system.

Stay tuned! More to come!

Posted in health & fitness, motivation | Comments closed
Listen to internet radio with RemissionMan on Blog Talk Radio
"Be the change you wish to see in the world " - Gandhi
string(18) "/home/jw3x14i9m7i0"