How are you ST? What’s new in your world? I needed a little dose of your insight, wit, and candor so figured it was time to drop you a line. I am living in the beauty and delicate balance of enjoying my family and beautiful granddaughter, reconciling a mild flare up of my leukemia, and trying to stay in (race) shape. I am actually racing Eagleman in 2 weeks and I think that distraction, and a little dose of Vigorito will be good for me.

But in short – LIFE IS QUITE GOOD.

I wouldn’t trade my life for anything or anyone else’s . I don’t “wish” for anything. Well that’s not true, I wish for others to be happy and feel as good as I do. And I pray for patience and perspective when the surf gets a little rough. But I don’t want or ask for “things”.  I feel like I have everything in life that could possibly bring me joy. I live a fairly tale life – and I am a happy guy. I simply try to do the right stuff and be open and accepting of most people and their individualities. It makes the world a happier place. And living in a happier place is a hell of a lot better than not.

Oh and have I told you that I am filthy rich? And getting richer each week…Of course actual currency and assets have nothing to do with my wealth. But the fact that I get calls and emails weekly from complete strangers who tell me they have seen or heard of my story, and it gave them hope lifts me to this breathtaking place that I can’t describe. I give them “HOPE”, Scott. Just typing it warms my soul.

The ability to do that for another human being is far greater than any paycheck or lottery winnings that you could ever throw my way. This is my mission. This has become my reason. It’s enabled me to look at my leukemia as a gift that I can use to my benefit and the benefit of people I will never ever know. I realize that sounds crazy. But many have called me crazy through the years. I was born a goalkeeper, went through a skydiving phase in the early 1980s and race marathons and ironman to “feel good”. Of course I’m crazy. But I like to think I have channeled it in an effective and meaningful way.

Life is strange. One minute you are looking up to your father, the next minute you are your father. We transition from overcrowded sleepovers to empty nests and then look around trying to figure out where the hell everyone and everything went. Some days, I desperately want to have a catch with my father. The one thing that is really important to me is the footprint I will leave behind one day. Especially for my kids. How will they remember and describe me to future generations? How will they talk about the father, husband, athlete, and man as they sift through the boxes of medals, pictures, and clippings.

These kinds of things matter to me and it’s one of the reasons that I try to live my life happy, clean, respectful, and most certainly FUN.

I hope all is well with you out left my friend. Drop me a line as time permits.

Steve

The tough part was finding a way to reconcile the fact that someone like ME could get something like THAT. But once I was able to digest that news, the doors flew open and the opportunities became abundant. As I look in my mirror today, it was little more than a speed bump. And I think I have been able to do some pretty damn good things with it… and meet some amazing people.

So while the cancer world may have thought it threw me something I couldn’t hit, I launched it 450 feet to dead center….. and am doing a very slow, celebratory, and defiant – yet thankful trot around the bases. And smiling. 

The key is not in how you live WITH it, it’s in how you live ABOVE it.

Happy diagnosis day to me.

In the back of my head (way way back), I acknowledge the remote possibility that my CLL could return… someday. I don’t believe it will and I live my life like it won’t. But that chance does exist. However, I buffer that notion with the understanding that treatments and protocols get better with each passing day and with each new breakthrough. So I rest very  comfortably knowing that “IF” I were to someday need follow up treatment, that the approach would be even better and met with more success than in 2006 when I went through my treatments.

I was aware of the below study as some of the best blood cancer research is done right here in my back yard at The University of Pennsylvania. The results of this study have now been released and this was picked up by our local ABC affiliate, WPVI 6ABC via AP.

And with this, I rest even more comfortably and confidently.

By Stephanie Nano – Associated Press

PHILADELPHIA – August 10, 2011 (WPVI) — Scientists are reporting the first clear success with a new approach for treating leukemia – turning the patients’ own blood cells into assassins that hunt and destroy their cancer cells.

They’ve only done it in three patients so far, but the results were striking: Two appear cancer-free up to a year after treatment, and the third patient is improved but still has some cancer. Scientists are already preparing to try the same gene therapy technique for other kinds of cancer.

“It worked great. We were surprised it worked as well as it did,” said Dr. Carl June, a gene therapy expert at the University of Pennsylvania. “We’re just a year out now. We need to find out how long these remissions last.”

He led the study, published Wednesday by two journals, New England Journal of Medicine and Science Translational Medicine. It involved three men with very advanced cases of chronic lymphocytic leukemia, or CLL. The only hope for a cure now is bone marrow or stem cell transplants, which don’t always work and carry a high risk of death.

Scientists have been working for years to find ways to boost the immune system’s ability to fight cancer. Earlier attempts at genetically modifying bloodstream soldiers called T-cells have had limited success; the modified cells didn’t reproduce well and quickly disappeared.

June and his colleagues made changes to the technique, using a novel carrier to deliver the new genes into the T-cells and a signaling mechanism telling the cells to kill and multiply.

That resulted in armies of “serial killer” cells that targeted cancer cells, destroyed them, and went on to kill new cancer as it emerged. It was known that T-cells attack viruses that way, but this is the first time it’s been done against cancer, June said.

For the experiment, blood was taken from each patient and T-cells removed. After they were altered in a lab, millions of the cells were returned to the patient in three infusions.

The researchers described the experience of one 64-year-old patient in detail. There was no change for two weeks, but then he became ill with chills, nausea and fever. He and the other two patients were hit with a condition that occurs when a large number of cancer cells die at the same time – a sign that the gene therapy is working.

“It was like the worse flu of their life,” June said. “But after that, it’s over. They’re well.”

The main complication seems to be that this technique also destroys some other infection-fighting blood cells; so far the patients have been getting monthly treatments for that.

Penn researchers want to test the gene therapy technique in leukemia-related cancers, as well as pancreatic and ovarian cancer, he said. Other institutions are looking at prostate and brain cancer.

Dr. Walter J. Urba of the Providence Cancer Center in Portland, Ore., called the findings “pretty remarkable” but added a note of caution because of the size of the study.

“It’s still just three patients. Three’s better than one, but it’s not 100,” said Urba, one of the authors of an editorial on the research that appears in the New England Journal. What happens long-term is key, he said: “What’s it like a year from now, two years from now, for these patients.”

But Dr. Kanti Rai, a blood cancer expert at New York’s Long Island Jewish Medical Center, could hardly contain his enthusiasm, saying he usually is more reserved in his comments on such reports. “It’s an amazing, amazing kind of achievement,” said Rai, who had no role in the research.

One of the patients, who did not want to be identified, wrote about his illness, and released a statement through the university. The man, himself a scientist, called himself “very lucky,” although he wrote that he didn’t feel that way when he was first diagnosed 15 years ago at age 50.

He was successfully treated over the years with chemotherapy until standard drugs no longer worked.

Now, almost a year since he entered the study, “I’m healthy and still in remission. I know this may not be a permanent condition, but I decided to declare victory and assume that I had won.”

(Copyright ©2011 WPVI-TV/DT. All Rights Reserved.)

This is a tough time on a few levels. I need to focus really hard to practice all of the things that I preach. I know everything will work out but I need to buckle up and button down while I go through this ride.

While I may not have looked at the diagnosis as a gift immediately, it didn’t take too long for me to come to that realization. Since 2006, I have been able to make some amazing connections, meet some extraordinary people, and work with a couple of class organizations as we all band together in the fight against blood cancers. And it’s for those reasons that I look at this diagnosis as a gift.

I also realize that my diagnosis date is not as significant as my date of remission, but it certainly is a date that stands out as having an impact on me. As many of you know, I started chemotherapy treatments almost immediately and reached remission within a couple of months.

When cancer first met me, I think it had an entirely different agenda and plan. But cancer is stupid, and it misjudged my character, my resolve, and the support within my inner circle. So now I stand proudly on top of a heap of broken, battered, bruised, and lifeless cancer cells and from time to time I glance down at the pile and with a warrior glare simply ask, “any questions?”

To all warriors, I remind you that we stand tall and we stand united. And to the warriors who have lost their battles, and to their families, I remind you that you will never be forgotten and we will continue to push on in honor of all who have battled.

Happy FC day.

Read on …

I am a 22 year old recent Penn graduate and now a nurse at HUP in Philadelphia.  I was reading over the Philly Magazine Be Well Blog and came across your name and story.  I just wanted to tell you that you are an inspiration for me.  My family found out in May that my 49 year old father (who has never been sick in his life) was diagnosed with CLL.  While he does not have any symptoms and is lucky to be Stage 0 at this time, this sudden diagnosis was shocking and devastating to us, especially since it is not common for people so young to be diagnosed with CLL.

My father has always been my hero and the person I aspire to be like, which sounds cliché but is 100% true.  Since my mother and I are both nurses, we knew the seriousness of this diagnosis and my mother especially has been having a really hard time trying to come to terms with my father’s diagnosis.  She has talked to many people who know someone who received the same diagnosis and she tends to focus on the worst-case scenarios.  Reading about your story made me so excited to show her an example of someone who was diagnosed young, just like my father, and who has pushed through and fought this illness into remission.  While we have no idea what is in store for my father and his fight with CLL, it’s always nice to hear of a good outcome.

I don’t want to take up a lot of your time, but I saw you are running in this Saturday’s 8k run.  I took up running myself just before we received my father’s diagnosis and it has helped give me an outlet to escape the worry that is sometimes prevalent in my family and explore what my body is capable of.  My father’s diagnosis encouraged me to sign up for this race and I can’t believe it is finally here.  I just wanted to let you know that I am even more excited to cross the finish line this Saturday knowing you are running in this race as well and I hope you know how much of an inspiration you are to people like me.

If you happen to see a girl with black pants and a red long sleeved Penn shirt on amongst the hundreds of people on Saturday, please say hello.  My mom will be there to cheer me on and I can’t wait to send this e-mail and tell her about your story.  Thank you so much for your story and good luck Saturday!

Chemotherapy treatment at Delaware County Memorial Hospital, Drexel Hill PA

So, today is the day. I was diagnosed with leukemia on this day ….February 24th, 2006. While this anniversary isn’t exactly a cause to celebrate, it is a day of reflection, and a day to show appreciation of many people… and things. I’ll save the real celebration for May 24th (2006) which marks my anniversary date of reaching remission.

As crazy as it sounds I can honestly say that my life got better after 2/24/06. Of course I needed to get through the treatments, pet scans, ct scans, biopsies, blood draws, and appointments. But once I did, once I made my way through the cloud of all of that concern and discomfort, life got better. Which should come as a pretty surprising statement since my life has always been a fairy tale.

The people that have touched me over the last four years, and those that I have touched have enriched and fulfilled my life beyond belief. I have met people and experienced things that could only have happened as a result of my diagnosis. While I don’t encourage anyone to run out and get leukemia to become enlightened or enriched,  I do encourage them to keep an open mind and an open heart if something like that were to happen.

I remind people constantly that we don’t always have choices in the things that happen to us, although we have total choice in how we react and respond to those things that happen. And it’s those choices that define us. It’s those choices that will allow us to be happy regardless of that stuff that happens.

I had choices, and I think I have made wise decisions. So, Happy Anniversary to me.

This also helps me shake most of the remaining cobwebs that are in my head since ChesapeakeMan. These visits always recharge me. I need to get focused for the NYC marathon.

Just wanted to share one small blurb of an email that I received last week from a friend who was recently diagnosed. These are words that every patient lives to be able to say. And everyone else prays to be able to hear:

“As for me, I am on the upswing from the transplant.  My new cells engrafted very quickly which was great.  I am still fighting off some of the other side effects that follow a BMT, but am hoping for discharge to home sometime next week.  Can’t wait to get out of here!”

Initially I really didn’t have too many personal connections with any of the causes that I participated in but over time, I developed many. That made the events that much more meaningful. But then on February 24, 2006 I was given a whole new reason to tie athletics with a cause and a better understanding of why we do these things. On that Friday afternoon in February, sitting in the office of an oncologist that I had known for one all of week, I was given a cause I can call MY OWN … My very own personal diagnosis of chronic lymphocytic leukemia – yeah me !

It was a cause that would forever change me and it wouldn’t take long to realize that it changed me for the better. It’s a cause that the more I sink my teeth into it, the healthier I would be, as would hundreds of thousands of others, and the longer I would live. How powerful of a motivator is that ? It’s like controlling your own destiny.

Oh and by the way, not only do I get be healthier and to live longer, I get to spend time talking, teaching, mentoring, and coaching beginner triathletes and enriching their lives as well. That’s not volunteer work – that’s paradise. So, becoming involved with TNT within days of my diagnosis required absolutely no thought at all. That direction was chosen for me.

The people that I have met along the way have been unbelievable. Survivors …… family of survivors, athletes, coaches, so many other volunteers all working towards a common goal. I get so much out of doing what I do. Thant’s why I feel like I should be paying someone for what I do…. Not being rewarded for it.

LLS and TNT really are like extended family to me…. My fellow coaches and I clown around like brothers and really enjoy each other’s company. Our Campaign Coordinators are the sisters we like to pick on but heavily lean on, and Executive Directors are the parental figures that we try to hide all of our antics from. In all seriousness, family is what keeps me going everyday and I’m proud to be a part of this family.

It’s with everything within me that I thank everyone very sincerely for last night’s recognition. And I look forward to many many more years and miles and races.