We lost a good man this week. A man everyone looked up to and gravitated towards. A man who I was proud to call a cousin and a man whose heart was filled with perpetual love and pride. 

Jackie had been fighting a tough fight with blood cancer which resulted in a number of complications. I was honored beyond believe when I learned that I was the one he wanted to talk to early in his diagnosis as he was trying to wrap his head around what his medical team at Penn was telling him.

Jackie didn’t talk with too many people in the beginning but asked to speak with me. I have these conversations all the time but they are generally with complete strangers and rarely do I ever even meet them face to face.

But this was different. This was family. This was Jackie. For the first time I was actually nervous about saying something wrong.

We exchanged a number of phone calls and text messages and my wife and I had a great visit with him at UPENN. We talked about every aspect of the disease and treatments. I essentially just wanted to be a sounding board or a safety net for Jackie to pull hope or inspiration from in any way he needed. I fully recognize that I am a poster child for things going the right way with my disease. I have been lucky and am always to share my positive experiences if it helps someone else. My wife made a very cool “FC” bracelet for Jackie to wear, which he wore with much pride and conviction. (FC = “fight cancer”).

I tried to take my cues from Jackie and not be overbearing with anything that I have experienced or witnessed – good or bad. If he wanted to talk about something, we talked. At times I think he just needed to know that support was there, even if waiting quietly in the wings. As one can imagine, he experienced a number of physical and emotional highs and lows but he was strong in his resolve to beat this beast. He knew he had too much to live for. And too many people who adored him were waiting for him to come home.

Our communication had trailed off recently and my messages eventually were not being answered.  I understand enough to know that could possibly be a bad thing, but it isn’t always the case. So I held onto much hope.

We received the news that Jackie passed and an instant hollowness filled my body. Please no. Not Jackie. Not now. Jackie wasn’t done here and I wasn’t done talking to Jackie.  This fight isn’t over.

Sadness, anger, emptiness, can all be used to sum up my feelings. So for what it’s worth, I have a few things I would like to tell Jackie:

Dear Jackie,

 IMG_20140508_00101535You are one of the bravest individuals I have ever had the honor of knowing. Thank you for turning to me during your diagnosis and for opening up to me. I only wish there was more I could have said, or done. You were never alone Jackie. Everyone who loves you prayed and thought about you constantly. You will forever be loved and cherished the way that you loved and cherished those who were dear to you. You are a good man Jackie. Losing you only strengthens my commitment to continue to fight blood cancer head on. In your honor and in the honor of others who have lost their battle before you, we will win this war. I’m sorry Jackie.

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Lauren Hart Show

Here is the clip to the Lauren Hart show that aired on May 1st on WMCN 44.

Lauren Hart – All Hart

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IRONMAN.com Article

IRONMAN.com just ran this piece on my return to the Chesapeakeman course.

Click to read.

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WTC Announces IRONMAN Maryland

World Triathlon Corporation (WTC) is announcing Ironman Maryland, a phoenix raised from the ashes of what was Chesapeakeman, to take place on September 20, 2014. The WTC has acted quickly to turn an imminent disaster into a windfall for its own brand and for triathletes living in the metro-Baltimore and greater Mid-Atlantic area.

Exactly one month ago Slowtwitch reported that WTC would take over the production of most of the races produced by the Columbia Triathlon Association (CTA). That followed by only 5 days a Slowtwitch report on the imminent demise of the series produced by the 30 year old CTA. The WTC did not know of the depth of the problems at the CTA until it read that story, and it took under a week to reach an agreement in principle to produce CTA’s multisport and Ironman-branded events.

Ironman is announcing that general registration for the inaugural Ironman Maryland triathlon will open Thursday, April 17 at noon, Eastern Time, on Ironman.com/maryland. The 2.4-mile swim will take place in the Choptank River on the Delmarva Peninsula. The 112-mile bike will take athletes through Dorchester County and into the Blackwater National Wildlife Refuge. The 26.2-mile run is flat, on country roads, providing a scenic and fast course. Ironman Maryland will offer 30 age group qualifying slots to the 2015 Hawaiian Ironman World Championship.
The deal in principle for WTC to acquire and run all of CTA’s multisport events has morphed, and it appears no longer the case that WTC will end up with all the triathlons. In particular, the The Ulman Cancer Fund for Young Adults (UCF) is set to acquire and run the Iron Girl Columbia Women’s Triathlon as well as the Columbia Triathlon, according to WTC’s press release announcing Ironman Maryland. “They expect to finalize their agreement next week and will re-open registration for those two races shortly thereafter,” says the release.

The UCF had evinced an interest in certain of CTA’s races almost immediately when the news broke that the CTA’s series was in trouble. The UCF is not without resources and manpower to produce events, as Kari Ebeling, a program director for the UCF, is the CTA’s former executive director. Neither Ms. Ebeling nor the UCF’s Brock Yetso, its CEO, could be reached for comment.

“We were initially focused on Eagleman,” said Andrew Messick, Ironman’s CEO. “That drove our urgency. Chesapeake man was a little understood piece in the early hours and days that quickly emerged into a real opportunity for us.“

Cheseapeakeman had not opened for registration, and it was very questionable whether it would have. The CTA intended to produce only 6 or 7 out of what used to be a 10-race season, and Cheseapeakeman was unlikely to make the cut. The Ironman that will take its place will sit on the same weekend as Chesapeakeman but the course, while sharing certain elements common with Ironman Eagleman 70.3, will be different than the old Chesapeakeman course.

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Clean Bill

For those keeping score at home, I had a follow up appointment with my favorite oncologist the other day. Everything is GOOD. My blood work is completely normal and I continue to feel really, really good. The results from a recent CT scan actually showed signs of a little growth against the previous CT, but there is a very logical explanation for that. We think we did that CT a little too soon after my last round of Rituxan treatment. Simply put, the Rituxan didn’t have enough time to “bake” in my system. Give the fact that my blood work is spot on perfect, I feel great, and there are no visible signs of any enlarged lymph nodes, there is little doubt that if I were to be scanned again today, everything would be reduced. The bottom line is I don’t need to visit again until August!

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Life’s Ring of Keys

pop pop and brynnWith each passing day I am reminded more and more how all of this stuff is connected and how each of us are somehow related to our neighbor. And with each passing day, I am reminded that the lessons I’ve learned about life, about dealing with disease, about work, about sports, or about anything else you can name, all boil down to a handful of common denominators that when realized provide a sense of acceptance, clarity, and comfort.

 For starters, we need to understand that we are all writing our autobiographies with everything we do each and every day. So what are we choosing to write? A bestselling thriller? Or a mediocre story that will quickly end up in the back of the discount rack? We own it. It’s ours. We are our own writer, producer, director, cameraman, editor, and for that matter – critic. So let’s write our story the way we want to be remembered.

 All too often people are paralyzed and motionless like a deer in headlights afraid to take that first step simply because they can’t see the entire staircase in front of them. Do we really have to care or worry? What’s important is that the staircase is sound and that you are sure-footed as you go. You don’t need the full road map right now this minute to be able to make your next move. Follow your heart and follow your instincts.

 We all have bad days. The truth is we all have some REALLY bad days. Hopefully we have many more good than bad. But whatever is making up your bad day, there is one universal truth. The sun will set on that bad day. And as has been the case for every one of my days so far in my lifetime, a new day will be here tomorrow. With healthy perspective and a little luck, that day should bring a renewed sense of hope and possibility. Good or bad, most of the emotions that we experience in life will be cyclical. The secret is to remember that and dress accordingly to ride out the storm while always remembering to cherish the good times, no matter how long they may last. Another one will return.

 We have far more choices than we sometimes care to admit. It’s sometimes easier to play the victim card and not take action because of something that has happened to us. While we don’t always have control over those happenings, we have full control over how we react and how we respond. Choose wisely.

 It’s ok to kick and scream and find fault when things don’t go as we hope they would; but only very briefly. Very soon you will need to pick yourself up and either resume your journey or chart a new course. And how do you do that? By not fearing the first step even if you can’t see that whole staircase.

 Have the courage to do the right thing even if it’s not the most popular thing.

 Did you ever notice there are certain people who brighten a room just by walking through the door? They possess a certain intangible quality that attracts goodness and light. They may not even have to say a word. They may just “be”. Figure out what those qualities are and choose to be one of those people.

 You can’t have enough friends, allies, and loved ones. But you should make it a point to let the people who are important to you, know that they matter. And it’s never too late to make that acknowledgement. I still reach out to teachers I had decades ago just to say thanks.

 Things aren’t always fair. Accept that and move on. But always try to create a level playing field and one of complete acceptance for everyone in your world, even if you may have been dealt a rough hand. Turn it around and make it count for something positive for someone else. Be a facilitator of positive change.

 Play is good for the body, mind, and soul. Do it more often.

Laughter is good for the body, mind, and soul. Do it more often.

Surround yourself with people who respect who you are on good days and bad. A little objective disagreeing is healthy and provides balance, but never sacrifice integrity and respect in yourself or in those you choose to spend time with.

This is really a pretty simple thing. I’m not sure why we choose to complicate matters.

Train, endure, achieve, matter.

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2014 Nicholas E. Colleluori Award

limelight4On March 21st 2014, I had the pleasure of introducing cancer survivor and heart transplant recipient Derek Fitzgerald and presenting him with the Nicholas E. Colleluori award for his demonstrated bravery and impact on the blood cancer community at the annual HEADSTRONG Foundation Lime Light Gala.

I have known Derek on multiple levels for a couple of years and have been working closely with the HEADSTRONG Foundation since I received this same award in 2012. It was only fitting that I be the one to make his presentation. Below are my notes from my introduction speech.

In 2006 my life was forever changed when I was diagnosed with a chronic form of leukemia. But opportunities to work with organizations such as HEADSTRONG and The Leukemia & Lymphoma Society have answered and validated that “why me” question.

And I tell you this simply so you’ll understand that through my personal journey, it’s been my fortune to have met many people who I would call heroes in this fight. And I have met many people who have touched me. While I never had the opportunity to meet Nick, I look up to him as a true hero and a trail blazer in this united fight against blood cancer. And I certainly have been touched by Nick and this mission.

The man you are about to meet has also touched me and I’m sure he will touch you.

I will share with you a couple of his high and low lights and let him fill in the grizzly but inspiring details. At the age of 30 Derek Fitzgerald was diagnosed with Non-Hodgkin’s Lymphoma. He underwent 5 months of chemotherapy and the good news is that treatment cured his cancer. The bad news is that same treatment also killed Derek’s heart. For the next 7 years, Derek’s condition continued to decline – ultimately ending him up on the waiting list for a heart transplant.

He didn’t know how many tomorrows he had left.

But on January 3, 2011, Derek was reborn when he was given the gift of a new heart. Recovery was long, and slow, and difficult, but 8 months post transplant, with a new beating heart, he finished his first 5k race – two months later, his first half marathon. And that was only the beginning of what was to follow. Including not one but two ironman triathlon finishes in 2013.

I sometimes tease Derek, telling him that anyone can do this stuff with new body parts. He is quick to remind me how thankful he is for that 3rd chance in life and how grateful he is to his donor.

Derek has become a valuable advocate for the HEADSTRONG Foundation. He was an honorary Captain at the Nick Colleluori Lacrosse Classic sharing his experience and educating athletes. He has also joined the HEADtable program visiting with hospitalized patients providing inspiration & encouragement.

Derek has also remains very involved with The Leukemia & Lymphoma Society; both through the Team in Training program where he and I met, and he is also a 2014 Leukemia & Lymphoma Society Man of the Year Candidate.

I have had the pleasure of knowing Derek as his triathlon coach, as a fellow survivor, and as his friend. And the more I get to know about Derek Fitzgerald, the more I shake my head in awe of everything he has overcome and accomplished and at the person Derek is.

Ladies and gentleman, it is my privilege to present a true survivor, ambassador, hero, and winner of this year’s Nicolas E. Colleluori award – Mr. Derek Fitzgerald.

For more on The HEADSTRONG Foundation visit www.headstrong.org
For more on The Leukemia & Lymphoma Society visit www.lls.org and www.teamintraining.org

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New Opportunities

I was contacted by a PR firm who represents Genentech. Genentech is the drug company who manufacturers Rituxan which has been so crucial in my successful leukemia treatments.

It seems they found me through my blog and my writings about my diagnosis and now want to partner and manage media opportunities for me with Genentech. We had a great chat on the phone, I then received the below email. It just goes to show you that you never know who is listening. Read below:

Hi Stephen,

Thanks for taking the time to speak with us earlier today about your inspiring personal story, experience with Rituxan and potential participation in CLL awareness activities. It’s clear you’ve already reached a lot of people by sharing your story and providing support to others who are newly diagnosed.

We’d love the opportunity to work with you to raise awareness about CLL through media opportunities. This may include sharing your story through phone or possibly in-person interviews with local newspaper/magazine, radio and/or TV news outlets. We would ensure you are fully prepared prior to any interview, with information about the reporter/news outlet, focus of interview/story and targeted timing.

We evaluate media opportunities on an ongoing basis. In addition to this, from time to time, there might also be an opportunity to speak with Genentech employees at special events. We’ll contact you as any opportunities arise, and will also check in every 2-3 months to see how things are going.

Again it was a pleasure speaking with you this morning and please reach out to me if you have any questions.

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Our Toes Aren’t Always in the Sand

A friend recently reached out to me looking for advice for herself and for her friend who was recently diagnosed with a terminal illness. I thought I would share some of my response.

No forgiveness needed. This is a tough one and I’m really sorry for everyone dealing with this. There are a number of things that I did that helped me both process what I was going though, and help with some of the physical and emotional side effects. These may or may not work for someone else but hopefully she can take at least one thing away from my experiences.

One thing that helped me dramatically was to write about it. And it doesn’t need to be anything formal and can be anything from a blog to an email to yourself, or just a running journal of thoughts and feelings. This helped me identify some of the feelings that I was having and was good therapy.

Also, music was key for me. While I can’t play a single lick of anything on any instrument, I am a music junkie. So just being able to get lost in my music was another way to escape and relax my mind. In many cases the music and the writing went hand in hand.

I don’t know what her level of energy is or will be but of course activity was really important for me as well. If she is up for it and can get out to walk, it may help. It paid huge dividends for me.

Her support team is in a tough spot because you all want to do the right thing by her but sometimes you don’t know what that is. Hell, she may not even know what she wants or what she needs. And if she does articulate those needs, they may and probably will change. Couple all of that with your own sadness and it can be a tough thing to manage. So one of the best pieces of advice that I can give you is to ask her what you can do or be for her. Give her control and ask her to direct you guys. You are her team. She will follow your lead. If you walk timidly around her and her situation, she will do the same. If you open the door to attack it, and talk about her feelings and fears openly, she will follow that lead as well.

She may want to walk. She may want to talk. She may want to write or listen to music. She may want to look through pictures and relive some of those memories. Or she may want to cry. Ask her what she wants to do right now in this moment. And also, when the time is right, ask her what you all can do in her name and in her honor. But for now, be alive with her and embrace every exchange.

Happy to continue this conversation with you and whoever.

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Health Fitness Broadcast Interview 3

I recently chatted with my friend Sherri Horner, host of Health Fitness Broadcast. Click below to check out our interview. This is actually the third time I have been on Sherri’s show. You can check out the first two on the MEDIA page on this site.

Enjoy http://m.youtube.com/watch?feature=c4-overview&list=UUa80rlT6_NKtSbo1YlMT7_Q&v=E-QulrU7r1I&desktop_uri=%2Fwatch%3Fv%3DE-QulrU7r1I%26list%3DUUa80rlT6_NKtSbo1YlMT7_Q%26feature%3Dc4-overview

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