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.

Steve,

A friend of mine sent me the link to remissionman.com, and I felt the need to reach out to a fellow triathlete/former soccer player/leukemia surviving dad. After browsing your site, I’m beginning to think we’re cosmically joined at the hip as the similarities are almost scary. I won’t bore you with the details–you’ve lived them–but I just wanted to enlist you as a valuable member of my own support crew if you’re willing. If there’s one thing I’ve learned since I was diagnosed in late 2004, you can never have too many friends. Holler back if you get a moment. Until then, be well. In health and happiness -

Steve,

It’s great to read about your story. I was just starting triathlons before my surgery. Someday I’ll get back to it. Gotta take care of a few things first… Keep up the good work!

Steve,

Thank you so much for your story. I too have CLL and am in complete remission. I am less fit and older and your story has inspired me to do something about the “fit” part. Thanks again. Good luck.

Steve,

You are a true inspiration. I am Vince’s wife Janet and I relived your struggles. Vince and you are very similar. Janet Papale

Steve,

Hi…

My husband is a follower of Graeme Street and a believer in the Hammer nutritional products. He came upon the feature article on you in the January issue of Endurance NEWS. While CLL is probably more common than people realize, we have never seen any articles written about people, athletes like yourself, who have had this disease.

I was diagnosed with CLL in 1996 at the age of 47 because of blood work that I had requested just for a good physical only to find my white count was higher than normal. The doctors just kept an eye on it but it never subsided and in 2000 I began therapy and had an autologous bone marrow transplant. I was out of remission after 5 years and again we played the wait and see game. I will be starting chemo in March to try and get back into remission.

I have been biking for many years as well as skiing, doing some weight training and anything else to keep healthy. I think I have succeeded with as much as I am able to control. I have always felt good except during treatment.

I guess the point of writing to you is to try to find out as much as I can about what you did to keep yourself fit-Hammer products in particular as well as your nutrition in general. I am very active and do follow a good diet-except for the love of chocolate, dark of course.

The article actually was refreshing compared to all of the depressing articles on the Internet which I have stopped reading long ago. I want to remain as active and as vibrant as possible not only for myself but for my husband and 6 grandchildren. I really don’t have time for set backs.

Please let me know what you did, what your treatments consisted of, and how your disease progressed.

Steve,

I read your bio on your web site and was very intrigued. I guess I am sending this email because I too have a story. 1 1/2 years ago I quit smoking and drinking and began running. I did my first sprint triathlon (Irongirl)last August and have completed 2 marathons so far. Not only that but in 1995 I was diagnosed with Multiple Sclerosis. I just became a certified fitness trainer as well. I too want to be people’s inspiration. I believe if I could do these things anyone can. I want to help people have their own stories to inspire others, I am not sure how to do this, any advice? Thank you

And those are a few reasons why I do what I do.

1). Blood cancers do not play by any rules. No logical ones anyway.

2). Stuff can happen to anybody. And it’s not the “stuff” that measures our character, it’s how we react and respond to that “stuff”.

3). The internet is full of as much useless information as useful. Talk to doctors and choose your websites and content wisely. Don’t just blindly search a disease.

4). Some friends and family will shy away from you not because they don’t care; but because they just don’t know what to say or do and would rather avoid the situation. It’s not personal. It’s just their way of coping with someone else’s illness.

5). A strong mind and will is an amazing force and should not be underestimated.

6). Support crews are critical.

7). Chemotherapy nurses are among the most special people on the planet.

8). Don’t be afraid to ask questions and get second and third opinions.

9). Take things one step at a time.

10). Some incredibly positive things can be done with what might initially seem like very negative news.

Since I was treated as an out patient, I often ran back home after my chemo treatments. Part of it was to try to control SOMETHING in a relatively uncontrollable situation. Part of it was just to try to stay fit. But part of it was also to send a message to the cancer that I was not going to lay around the house and be a victim. This ended up being a very empowing move which I am sure aided my swift remission. Granted not everyone is a runner, but simply walking and moving or doing something during an illness and treatment can help keep you balanced and focused. And that sense of emotional well being and stability has to have a positive effect on your overall healing process.

Get out and move.Enjoy the moment, the day, the scenery, whatever. Just do yourself a favor and get active. It is one of the most effective methods of therapy around ! And it’s FREE.

We were all eager to flip the calendar over to 2006 and start fresh. We needed a fresh start and we thought we were owed a break. At the same time, I was beginning to have some difficulty swallowing so I scheduled a few doctors’ appointments to try to determine the reason why I had been having throat issues. And that is where the problem began. What I thought was going to be a simple tonsillectomy, turned out to be a Leukemia diagnosis. Upon hearing the news, I did what most people do in that situation, I scratched my head, got depressed, and tried to figure out “Why me”?

But soon enough, the solution became clear to me. I knew what I needed to do. I needed to address the problem. Discuss my options. And fix the problem. I needed to do so with minimal impact to my family and loved ones. We could not afford another family crisis. I think I willed myself back to health because I just refused to have it any other way. I owed it to myself and to my loved ones. Fortunately, I was blessed with an amazing support crew who helped catapult me back to health.