Hi Steve. 

I wanted to especially thank you for raising money for this cause.  My brother Rich (father of 4 great children) was diagnosed with non-Hodgkin’s lymphoma, sub-type large B-cell lymphoma 5 years ago.  I am happy to say that today, he is doing well!  It was a very tough year of Chemo but he was a real trooper throughout!  

Unbelievably, at the same time, my Dad (Father of 9, Grandfather of 27) was diagnosed with prostate cancer.  So, needless to say, our family was very stressed out!  But he too was strong is also doing well! 

And finally, for my nephew Jacob…..he is a real special survivor.  Jake had a brain tumor at age 3 yrs; 11 months.  The tumor was a rare form called Rhabdoid, with a low survivor rate – 20%; they basically gave him 6 months to live.  But the strength of small child is sometimes amazing…..2 years of treatment (Chemo and Radiation).   Jake will be 13 on April 30!  

So, on behalf of my family of survivors, thank you Steve for raising money for these sick children.  You are a very special person and I am so glad we met at Cabrini!

Take care and good luck

First, I reminded them that I am living proof that in spite of doing all of the right things; in spite of eating right, exercising, and always trying to make the right choices; crap happens. And when it does, the first choice you have is to make is whether to sit on the couch and feel sorry for yourself, asking all of the “why me” questions….. or address the problem and move on.

Point number two… treatment can work. For all of the terrible stories you hear of death and loss, there are even more examples of survivorship. I drove the point home that we are winning this war and that all of the research and advancements that have been made in cancer research is working. My doctor called me a “responder” early on in my treatment because I reacted so well to what many people refer to as poison – chemotherapy.

And lastly, I reminded them that they were there to play a sport that they loved. And the beauty of the weekend was that they were able to play a game, while raising huge dollars for a very worthy blood cancer cause. I pleaded with them to never lose track of that concept. I told them that they had all been given a special gift in that they were being given the chance to do something that they loved, while making a difference in the lives of others. I told them that I hoped that whatever their passions end up being 5, 10, or 50 years from now, that they will always try to find a way to unite their passions with ways to give back – some how, some way.

In 2004, I was 39 years old and in the middle of a professional career as a public relations consultant when, during a routine physical, a massive tumor showed up on a chest X-Ray. A biopsy and scans indicated it was Stage IIIs Hogdkin’s Lymphoma.

My wife and I were living in Germany at the time, so we relocated back to the States to seek treatment in Boston. We did extensive research on the disease, getting valuable advice and information from The Leukemia & Lymphoma Society. We needed help – we were trying to sort out moving, insurance coverage, financial assistance and housing needs all at the same time.

What we thought would be a six-month treatment plan turned into two years. The standard chemo regimen did not work on my tumors, nor did a second-line chemo. My doctors recommended high-dose chemotherapy and an autologous stem-cell transplant. That put me into remission, and to keep the cancer at bay, I had 37 radiation treatments to the affected areas. It took twelve months of physical therapy to deal with the side effects of the treatment, but I was able to return to work full-time in 2006.

Five cancer-free years later, I am considered ‘cured.’ Forty years ago, my medical options would have been extremely limited. I have always been amazed that what was once an ‘experimental’ treatment – high-dose chemo and a stem-cell transplant – is now a widely-accepted option for blood cancer, thanks to advances in medical research and the work of organizations like LLS.

And, proven treatments for blood cancers are now expanding to other kinds of cancer, bringing hope for more cures. That is why I am such a strong supporter of Light The Night Walk – not just for the assistance it provides to patients and their families, but the medical progress it helps fund, to reduce the suffering and loss millions of families experience every year.

Please join the effort to help us bring more cures to those affected with cancer!

Dear GRS Marathon Team,

My cancer is back and wants to set up shop inside my body and destroy it.  Obviously this WILL NOT happen.  I WILL NOT let cancer win.  Emotionally, I’m just beyond the total shock and disbelief .  The reality of the situation is starting to set in and I have never been so scared in my life, for my life.  I will use every ounce of my mind, body, spirit and supernatural powers to stop this horrible situation.  But in order to do this I have to remain positive and endure a pretty intense path to perfect health.

I will be undergoing a clinical study titled:  Risk-adapted high dose chemoradiotherapy and autologous stem cell transplantation for patients with relapsed and primary Hodgkins Lymphoma.

This is basically a triathlon or “marathon” of hardcore super strong treatment. If you could hit the “reset” button on your body, this would be it.  In stage one, I will have two sessions of in-patient chemotherapy.  Starting this week I will be admitted to the hospital for 4 days to get infused with a combination of drugs called ICE.  Three weeks rest, then repeated.  Following ICE, I receive injections that force my body to produce lots of stem cells that will be harvested.  Stem cells mature into the cells your body need to function.  The harvesting process is like giving blood 4 hours a day for 5 days.  My healthy stems cells are frozen and stored for later use.  In stage two, I will get blasted twice a day for 14 days with a high dose of radiation.  In the final and most difficult stage, I will be admitted to the hospital for 30 days (yes a whole f’ing month), to get my final chemotherapy session to start my stem cell transplant.  For all you Seinfeld fans, I’m officially the bubble boy.  My body gets infused with my healthy stem cells, which will travel into my bone marrow to produce cancer free blood cells. Then I’m cured. Easy as 1,2,3…4,5,6,7,8,9…1000…1,000,000.

Once again, I will need to hijack all your thoughts, prayers and well wishes for the next year.  I know you all care about me and that means so much, especially now. I gain strength knowing that we are all fighting this together.  So, please don’t take a day off…unless you are watching soccer or making babies. I listen to every single message, but I’m horrible at calling people back. I’m way better over e-mail and I will do my best to keep you updated via e-mail, facebook and twitter (Can’t believe I just wrote that).

Thanks again for your unflagging support. I love you all and run strong.

Ethan

Dear Ethan and Team,

I am slowly processing all of this and in spite of this news which many would perceive as “bad”, I see two things that rise to the top of the message. And they are your underlying positive spirit and your sense of humor. Both are CRITICAL to anyone’s success no matter who their opponents are. Although I have always considered myself spiritual, it wasn’t until my leukemia diagnosis in 2006 that I really started to understand that people sometimes receive “gifts” like this for a reason.

E, you have already done amazing work with LLS, Livestrong, and other organizations and used your personal diagnosis as a way to raise funds and awareness so that others may benefit.  This battle will be no different and will only aid those efforts. You know how to do this … one treatment, one infusion, one appointment, one day, and one mile at a time…. The same way we all will attack 26.2 miles.

Your support system is vast. Check that, your support system is incomprehensibly immense. Your support system will help you get through this but in reality, YOU are strong enough to not only get through this, but to get through it authoritatively and decisively. You wrote the book on SURVIVORSHIP and everyone you know will continue to support and assist you.

Cancer is generally stupid. In your case, lymphoma just picked the wrong person to start a junk yard scrap with.

We’ve got your back.

Steve

Of course the angle for me is intended to be more motivational than anything else and is all centered around my leukemia diagnosis, triathlon, and Team in Training. There will be other familiar faces on the show as well. My footage was all shot at the Community YMCA in Lansdowne. I’m sure everyone has better things to do on Labor day (I know I do) but if you find yourself passing a TV at 1:30, check it out.

A message from the parents of Taylor Love …

Taylor’s Story

Taylor Nicole Love was born June 27th, 2005 a beautiful, blue-eyed, blonde-haired baby girl. Her sparkling blue eyes told us she would be a charming, joyful sister to her brothers Adam and Kyle. As she sang and danced in anticipation of Christmas 2006, we noticed a bruised and apparent lazy eye. First a visit to her pediatrician followed by a trip to an ophthalmologist led us to our eventual nightmare. On December 12, 2006 our 18 month old baby girl was hospitalized and diagnosed with stage IV, high risk neuroblastoma a deadly cancer with no known cure. She had a tumor on her left adrenal gland, a tumor behind each eye and disease in her bone marrow. We would now learn what a horrible, aggressive and relentless disease this is.

Since her diagnosis Taylor has endured countless procedures, biopsies, blood transfusions and stays in the hospital. She has undergone 7 rounds of high dose chemotherapy, a surgery to remove the tumor in her abdomen and a stem cell harvest. She has completed 4 rounds of a phase I clinical trial which included immunotherapy treatment and IV radiation. She had undergone radiation treatments to her head, orbits and abdomen and is currently undergoing treatment in a phase II antibody trial at Memorial Sloan Kettering Cancer Center in NYC.

Even as these treatments beat down her body, Taylor amazes us with her strength, courage, and contagious spirit. We continue to be inspired by our sweet little angel, with her sparkling blue eyes and cheerful smile. Watching Taylor play with her brothers and listening to her sing gives us the hope and strength we need to walk down this long uncertain road.

To learn more about Taylor and neuroblastoma, including ways you can help, please visit www.taylorlove.org
For more on this weekends Splash N’ Dash, please visit www.timkerrcharities.org

Resourceful Way to Remission
 A lifelong athlete runs cancer into the ground

By Robyn Ray, from the July 2009 issue of Wilmington Trust’s JOURNEYS publication.

Three years ago, when Stephen (Steve) Brown, Wilmington, DE received an unexpected and fear-invoking diagnosis – cancer – he did what he does best – he got physical.  He ran into the disease head-on and just kept going, until the fear and physical illness were behind him.   

“Athletics and fitness has been my ‘thing’ since I was about 9 years old; actually, probably younger, but that’s when I was introduced to organized sports.  Over the years, my passion for all things fitness-related has evolved and, while my interests have changed from year to year, my dedication to an active lifestyle has been an extremely important aspect of my life.  Pursuing fitness is my therapy; my ‘go to’ place,” explains Steve.  For the past 20 years, this passion has taken the form of endurance sports such as marathons, Ironman competitions, and triathlons.

The Shock
Steve’s childhood and youth were idyllic, filled with great friends and memories.  But for the first time, in 2005, “things started to unravel” recalls Steve.  After the sudden death of his dad and serious health problems experienced by his still grieving mother, it was with great relief and optimism that Steve and his family turned the calendar page on December 31, 2005 – all needed a fresh start.   

Two months into the New Year, Steve saw a doctor about the trouble swallowing he’d been experiencing: “What a nuisance tonsillitis would be, but,” Steve thought, “I’ll have a tonsillectomy, get the procedure out of the way, and move on to triathlon and Ironman racing season.  I figured, maybe I’d breathe better and even get a little faster.”  Not so fast.  Pre-surgery testing revealed that Steve’s white blood cell count was elevated and he was referred to a hematologist/oncologist for more testing.  The tests showed that Steve had cancer – chronic lymphocytic leukemia.  This Ironman could do nothing but shake his head in disbelief and ask “why me?”

Moving Forward

Steve met with doctors and began to create a treatment plan, while thinking, “Treatment shouldn’t be too bad; I see plenty of windows of opportunity to continue working out and training.”  But Steve’s doctor had other ideas.  “Maybe we should give the triathlon stuff a rest until we get a handle on this thing [cancer],” the doctor said.  As Steve recalls, “I glared at him for seemed like an eternity. I couldn’t wait to leave his office so I could go find a new doctor who would allow me to train during treatment.”  But Steve took a breath and explained the importance of doing something during treatment – being active was an emotional need, a way to cope.  After much negotiation, the never-before-cancer-patient and the doctor-who-had-never-before-treated-a-triathlete met halfway: Steve’s doctor realized the emotional and mental boost that Steve’s physical regimen would provide him as he navigated the rigors of cancer treatment, and Steve realized that he’d have to put Ironman competitions temporarily on hold.    

The marathon of chemotherapy treatments began and, on days he felt able, Steve maintained his athletic training schedule; when he was tired, he didn’t push too hard and rested, as he promised the doctor he would.  “I tried to make it a habit to run home from my chemotherapy treatments.  This wasn’t one of the negotiated terms, but since it wasn’t expressly forbidden by my doctor, I considered it to be allowed,” admits Steve.  “And I got a lot of enjoyment from watching the shock on the chemo nurses’ faces when I left a four-hour intravenous (IV) session of chemo with a bandage on my punctured vein and laced up my running shoes to run home.  It helped me to feel in control; like I was playing head games with the cancer.”

Steve had one week of IV chemo, then three weeks of recovery – this “cycle” of treatment was repeated for four cycles.  It was after being diagnosed and during these cycles of treatment that, as Steve says, “A giant light bulb went off – I knew that I needed to get involved with the Leukemia and Lymphoma Society’s Team in Training® program.”  The Leukemia & Lymphoma Society (Society), the world’s largest voluntary health organization dedicated to funding blood cancer research and providing education and patient services, holds athletic competitions in which sponsored participants raise money for the organization.  To help participants successfully complete the physically demanding competitions,  which include marathons, half marathons, triathlons, 100-mile bike rides, and hiking adventures, the Society offers a sports training program run by volunteer athletes.  Steve signed on with the Society as an assistant triathlon coach – he coached athletes on the weekends and received cancer treatments on Mondays.

Keeping Pace

Only one month after completing his initial, four cycle treatment, Steve participated in a sprint distance triathlon; two months after the event, he ran an Ironman distance triathlon.  “These races had been on my calendar since before I was diagnosed and it was important to me that I use them as goals to work towards during my treatment – keeping these commitments forced me to mentally visualize myself as healthy at the end of my treatments.  It was another way of using my passion for fitness as a tool or a weapon against the leukemia.”  Steve was in control – he was harnessing the mental determination and physical strength that helped him train for, and compete in, so many grueling athletic competitions, to motivate him through treatment.  He was coping, visualizing a positive outcome, and making it happen with his strong will and chemotherapy.

It worked.  Today, Steve’s cancer is in remission.  As Steve recalls of more difficult days in the past, “Staying as fit as I could through the treatment process allowed me to remain mentally and emotionally, ‘on course.’  I retained the aspect of my life which was normal while navigating an environment that was foreign to me.”  It’s not an exaggeration to say that Steve outran cancer!

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!”

Elli Wolpe, herself a cancer survivor, became part of the Leukemia & Lymphoma Society family when her husband David was diagnosed with follicular non-Hodgkin lymphoma. She is now one of our Team In Training® (TNT) participants. Here is a portion of her speech from the San Diego Rock ‘n’ Roll Marathon Pasta Party.

I remember reading once that when people tell the story of an event that changed their lives, they often begin with the words: “It was a day that started just like any other day…”

The same is true for us. It was a day that started just like any other day when I got a follow up call after my annual exam. I was 31 and a new mother. And I had cancer. It changed my life forever. But I was one of the lucky ones, it was caught early and I survived.

It was a day like any other day when my husband, David, had a grand mal seizure. We learned it was caused by a brain tumor that was removed in a 10-hour surgery. But he was one of the lucky ones. It was benign and he survived.

It was a day like any other day when, just two a half years later, David found a swollen lymph node that led to the diagnosis of follicular non-Hodgkin lymphoma.

Luckily, the chemo worked and he went into remission. But being in remission is not the same thing as being cured. In January, he got the last of his Rituxan®, a monoclonal antibody that was developed in part by funding from The Leukemia & Lymphoma Society.

Now we play the waiting game. Because incurable means it’s coming back. Only we don’t know when. All we know is that it will be on a day just like any other day…

Your support for The Leukemia & Lymphoma Society matters – to my husband, my daughter, myself… You are changing the world for people like us.

To learn more about LLS, please visit us at www.LLS.org.

In recent weeks I have met a few amazing people who are now key foot soldiers in the war against cancers. A couple of weeks ago I spoke of Ethan Zohn who is a professional soccer player, multi sport athlete, and winner of the TV show SURVIVOR – Africa. Ethan is undergoing treatment right now for his recently diagnosed lymphoma and is doing well. He is weak, and tired. But his will is bigger than it has ever been and he is committed to kicking his disease in the butt and moving on with his life. That life also includes running a charitable organization called Grassroot Soccer which raises funds for AIDS awareness and education in Africa. I hope to join Ethan this November where we will race the New York Marathon while raising funds for his charity. Ethan’s site is here – www.ezohn.com

Next there was a young woman named Caroline Cranston. Carolyn came to me through a college friend who is neighbors with Caroline’s family. My college buddy reached out to me explaining that Caroline, a former college lacrosse star, was just diagnosed and could use a friend who understands the process and who could help her build her support team. (As a side note – I totally love when I get these types of requests. I feel that have the opportunity to connect with folks who have been diagnosed has become part of my personal crusade). So, Caroline and I exchanged a few emails and we got to know each other a little bit. She just underwent a BMT (bone marrow transplant) last week and has rounded the corner and is on the mend. Ironically, Caroline’s sister Lauren was racing the Philadelphia Triathlon where I was working all weekend. She made it a point to come up and introduce herself to me, along with her husband and their parents. They are great people. And it is obvious that Caroline has some good teammates in her corner. I am making some arrangements to go to their home and meet Caroline in the coming weeks. A Caring Page has also been set up for her if you would like to follow her progress – http://www.carepages.com/carepages/CarolineGallagherCranston

And then there is Curtis Bronson..aka Curt ….. aka miracle man …..aka … one hell of a great guy. I met Curtis this past weekend at a Team in Training Inspirational dinner where he spoke prior to the Philadelphia Insurance Triathlon. 13 years ago Curtis was experiencing flu like symptoms which a few doctors just brushed off prescribing one antibiotic and blood test after another. Then eventually he received a phone call from his doctor instructing him to get to the hospital right away – without even packing a bag were the doctor’s instructions. He was told that the hospital staff was ready and waiting with an available bed. Shortly upon his arrival, Curtis was told that he had cancer which had completely taken over his entire body. Then he was told that he had 48 hours to live – at best. The next day, his docs presented him with a lottery ticket. A new clinical trial had just been made available that had a remote possibility of saving Curt’s life even if temporarily. Wasting no time in choosing between a roll of the dice, and an automatic death sentence, Curt agreed to the trial. The next few years were quite rocky and included a bone marrow transplant, graft versus host disease, two knee replacements, and countless other issues. But, the various treatments ultimately took hold and saved Curt’s life. Today Curt is married with twin boys. He also just completed the Lake Tahoe century bike ride with Team In Training, wanting to give back to an organization that played a big part in saving his life. Next year Curt hopes to complete a marathon with TNT and in 2011 we already hooked him into doing the Philly Triathlon. I spent several hours with Curt this past weekend and I think I laughed 90% of the time we were together. He is one guy who is passionate about life and everyone in it.

These three individuals will be huge assets to the team of people doing their thing and using their tools everyday to make a difference in the lives of others. And I am proud to call them friends.