Cutaneous Lymphoma Foundation Patient Conference

On Sunday October 30th I will be speaking at a patient conference held by the Cutaneous Lymphoma Foundation and hosted by Columbia University. My presentation on Sunday is entitled “Living Above Chronic Cancer” and will focus on some keys and critical choices that I’ve made in ten years of living with chronic lymphocytic leukemia that have allowed me to truly live above and beyond my diagnosis, and not simply with it.

Complete details and the two-day agenda can be found HERE.

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I’m All DONE

I am extremely happy to say that I am all finished with my chemo treatments!!! I had my check up this morning and the decision to stop was a pretty easy one. My labs all came back normal and my lymph nodes have all returned to normal size. There is no reason to continue. I need to go back in one month to make sure nothing has changed. Assuming nothing will, my port can then be removed and I can resume life!

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It’s a Feeling

When you live with a chronic disease like leukemia you have very heightened intuition. You develop a honed sense of self and learn how to analyze and differentiate between the little systemic bugs, chinks, and cliches that “normal” people face, and those that may be disease related. That skill becomes more advanced the longer you live with the disease. Ten years ago I would get confused over whether everything I felt was disease related or none of it was.

Today, I think I know myself pretty well and I feel like I’ve taken a more active role in my care and treatment this past year. I feel lucky that fitness has always been such a significant component of my life because my fitness level and perceived exertion has also proven to be a valuable and accurate barometer to measure my overall state of health. I’ve learned the difference between feeling exhausted from a great workout, and feeling exhausted from something just being off. I had some runs this year where my body just shut down. It stopped as if a switch was turned to off. A two mile run felt like a ten mile run and a five mile run felt like a marathon.

It was these runs, in addition to an elevated white blood cell count, and some much enlarged lymph nodes that threw the red flag for me and led me to my current treatment path. Most of this year, I felt disconnected from my body. My leukemia was making a move and waiting for my response. My response was an aggressive one. My response was full bore chemo (Bendeka) & monoclonal antibody (Rituxan) treatment plan that my doctor referred to as “the big guns”. There was no doubt in my mind that treatment was the right call. In fact it was me who initiated that notion. I knew I was “off” and needed to reboot. And while this treatment is highly toxic, it also has a very high success rate.

Since July I’ve been receiving monthly treatment. If you are reading this, you are probably well aware of that fact. And each treatment was filled with a series of ups and downs. There were some perfect days where I didn’t even feel like I was being treated with anything. And there were some hard days and nights where I felt toxic. There were days when I felt good enough to go for a run, and there were sleepless nights where nausea, fatigue, and excruciating pain or complete numbness of my arms took over. I would often sit in the chemo recliner and look up at the bags of clear fluid flowing into my system amazed at how something so seemingly innocuous could be so poisonous. A friend and foe at the same time.

It’s been a journey, but a positive one. I’ve gained a greater understanding of these treatment drugs and my body’s response. I’ve learned how to navigate and be patient with the roller coaster effects of this 28-day treatment cycle protocol. I’ve celebrated the little victories and buckled up for the turbulent turns. And I’m seeing great results. My blood work is aligning as it should and my lymph nodes have retreated to more normal size. And most importantly, I FEEL good. I feel like myself again. I’ll know next week at my check up if we are officially done with treatment but if my intuition is right – we’re done.

Stay tuned.

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Fords Fight for Life Night

On Friday October 14th, I had the honor and privilege of participating in an amazing event. My alma mater, Haverford High School, hosts a wonderful celebration and remembrance of those impacted by cancer through their football and football followers’ booster programs. The senior and middle school communities rally together and raise cancer funds and awareness through a number of channels, all of which were celebrated at the conclusion of the football game this past Friday.

IMG_2594I was one of several survivors who were honored and celebrated this year and was sponsored by Haverford Middle School teachers Ashley Gavio, Mo Gannon, and Kim Gilmore. Part of the celebration included presenting me with a commemorative game jersey worn by one of the Haverford players in Friday’s Haverford vs. Marple Newton match up. The proceeds of this year’s event went to the Kevin Cain Foundation. The Kevin Cain Memorial Foundation was established in April 2006 in memory of Kevin Cain, who lost his courageous battle with cancer in June 2005. Kevin is remembered as someone who made a difference in the lives of others by coaching youth sports and volunteering his time for worthy causes.

I think what made this night so special is the huge pride and amazing memories I have when I think of Haverford. Since I was a little kid, I have great memories of going to high school football, basketball, and baseball games and watching and idolizing the “big kids”. No doubt that planted the seed for me to go on to play three sports over six years in my Haverford Junior and Senior High School career. There was something so special about putting on that red and gold uniform; regardless of the sport or season. To this day, when I see those colors, it ignites an adrenaline rush within me.

IMG_2596So thanks Haverford. Thanks for giving me so much to be proud of and thankful for. And thanks to all who were included in the Fords Fight For Life celebration. Special thanks to my sponsors Ashely, Mo, and Kim and to long time Haverford friend and Coach Paul Bogosian.

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2016 Chemo Round 4

chemo poleI’m going to keep this update short and sweet because quite honestly, that’s how this round of treatment felt. Short, and sweet. Monday started with a checkup with my doc which went really well. My white count was a little low but that is to be expected at this stage of treatment. Given my incredible response to the chemo and the fact that my white count is starting to take a hit, it’s quite possible that this will be my last treatment cycle. We’ll know more in two weeks at my follow up appointment. But that’s the gut feeling we are going with right now.

Monday’s “long day” of treatment went much faster than the previous three cycles. Although I did have a mild facial rash start to develop, it was quickly tamed with some extra Benadryl and a temporary suspension of the Rituxan. Even with that, I was out of the chair much much quicker than in treatments past. This just means that I was tolerating everything very well so they were able to accelerate the drip rate. That doesn’t always happen for me. I was a little punk-like Monday night when I got home but nothing too serious. And nothing a little rest on the couch couldn’t take care of. I was even pleasantly surprised that I was able to get a good night’s rest even with the Decadron steroid holding Olympic trials in my body. In the past, this has always kept me awake. But for whatever reason, I got great sleep on Monday and woke up Tuesday feeling very fresh and energized.

Tuesday was my short day and only took about an hour and a half. I felt so good after that session that we made our way to Veterans Memorial Park and I ran 3 miles. I felt like I could have run all day. I followed my run by jump squatting up Battle Cry hill. And I certainly did not feel like I had just gotten up from the chemo chair. It was a good day. And to top it off, I got great sleep Tuesday night as well. Again, a rare anomaly with Decadron. I am lucky and I am blessed.

chemo runToday I received my Neulasta shot to bring my white blood count back into range. I may or may not experience some bone or joint pain with this. It’s hard to say as I’m a tad on the unpredictable side. So now we rebuild and recovery and hope for minimal residual side effects. Then we check in again on October 24th to assess the situation and make a determination that a little more treatment might be beneficial or that our work here is done.

Stay tuned, and thanks for your support.

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Lake Placid Revisited (Take IV)

I’ve toed the line of 15 iron distance triathlons and crossed the finish line of 12 of them. While DNFs are always disappointing and humbling, there is usually some kind of take away or life lesson to be found once the emotional and/or physical bruises heal. I’ve successfully raced Ironman Lake Placid 3 times; in 2002, 2003, and 2005. And while I’ve raced other iron distance races since then, it’s been quite a while since I’ve visited the beautiful village of Placid.

I went to Placid in 2005 with much trepidation and under great emotional stress. As I raced, my father was in Bryn Mawr Hospital in Bryn Mawr Pennsylvania fighting to recover from the surgical removal of a large tumor. While my mind was obviously elsewhere, and triathlon was far from my top priority, everyone insisted that I make the trip with the understanding that Dad’s condition was stable. I raced in honor of my dad and somehow thought that my sweat and tears while wearing his WWII dog tags would give him added strength. Somehow, I finished that race, but everything felt wrong about it. A couple of weeks after my return home from Lake Placid, I lost my dad.

Shortly after that I learned why I felt so physically depleted on the course of IMLP ‘05. Early 2006 is when my leukemia diagnosis came and looking back, a lot of things started to make sense about my fatigue in LP.

That was then. And since that time, I’ve undergone 52 rounds of chemotherapy to put and keep me in remission from my disease. I’ve raced many races, traveled many miles, met many incredible people, and unfortunately I’ve also lost too many.

2017 will prove to be yet another new beginning. My latest rounds of treatments will be done and I will be physically and emotionally whole again. All of this is just another reason to embrace my return to Lake Placid. It will be a fresh look at a course that I love in a town filled with great memories. I’ll again carry my dad’s WWII dog tags and with an ever expanding family cheering along the course, we will again conquer LP; this time version 70.3.

Thanks for reading.

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2017 Ironman Lake Placid 70.3

I’m putting out a plea for some help. I figured this would be a great way to knock cancer out of the ring and declare victory. I just signed up for Ironman Lake Placid 70.3 to be held next September. This is a fundraising effort through the Ironman Foundation which raises funds for various philanthropic initiatives within the communities that support their events.

Here is the important part – I’ll take care of all of the training, racing, and kicking cancer to the curb. All I need from you is a modest tax free donation on behalf of my efforts. A secure fundraising link can be found below.

I realize I still have a few chemo treatment cycles remaining, but it’s important for me to look forward and begin to reclaim my sense of “normalcy”.

Thank you very much for considering.

CLICK HERE to help.

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Today’s edition of “how to beat up cancer” using visualization and mental imagery goes like this. On my midday run today, I envisioned taking my leukemia out for a run on a leash. We start out stride by stride but the leukemia soon trails a little behind me, then a little more. It starts to look distressed. So I run faster. As I pick up my speed, it drops to the ground and I’m now dragging it by the leash as it bounces out of control up and down off of the concrete; bruised, tattered, and bloody. So I grab a tighter hold, run faster and look it in the eyes and smile and say “how are ya making out down there? Ya big dummy”.

It was a great run.

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You make time for the things that matter. I am extremely excited to take on a new venture this year. Beginning this fall I will start working with the incredibly caring and talented staff at The Community YMCA of Eastern Delaware County and their LIVESTRONG at the YMCA program. This is a research based physical activity and well-being program designed to help cancer survivors achieve their holistic health goals. Participants work with YMCA staff trained in supportive cancer care to safely achieve their goals such as (re) building muscle mass and strength, increasing flexibility and endurance, and improving confidence and self-esteem.

livestrong YMCA 1I have been a member of the Community YMCA for 20 plus years and served on the Board of Directors for about 7 years. And while I have supported and assisted the LIVESTRONG program a little in the past, I am very psyched to be taking on an expanded and more active role with our members. This is an outstanding organization that I have always been proud of associating myself with and I’m very much looking forward to this next chapter. This is also yet another example of a gift or an opportunity that has come as a result of my own diagnosis. I do know a thing or two about this subject matter, but had I never been diagnosed, I doubt I ever would have made the connection and decision to get involved with LIVESTRONG.

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Be Like Mitch

It’s been a week since the passing of Mitch Kline. I’ve wanted to write a few words this week but no clear thought found its way out of my head. But I’ll ramble for the sake of rambling and because I need to. Mitch was a friend to all and a dear friend and supporter of Team in Training and the Leukemia & Lymphoma Society. I had the honor of helping coach Mitch through four triathlons with our Eastern Pennsylvania chapter and I can honestly say that from our first meeting, it was very clear that Mitch was someone very special.  A teacher and coach by profession, Mitch had a way of touching the hearts of everyone he met.  Mitch was a humble, thoughtful, caring, – give you the shirt off of his back – kind of guy.

MitchMitch was drawn to TNT and LLS through the loss of his beloved wife and high school sweetheart who was taken from him far too early. So Mitch raced in honor and in memory of “his girl” Sandee on the hybrid bike that she had given him and became one of the top TNT fundraisers in the process. Mitch was dedicated and committed to all things good and just in this world. His family, his faith, his ability to impact the athletes he coached, his community, and the list goes on. This was made even more apparent as we sat at Mitch’s funeral service last Sunday. The outpouring of love from an overflowing room left our hearts feeling hollow and warmed at the same time. I only knew Mitch for about 5 years but while my relationship with him was relatively brief compared to many others in that room, it mattered and it was meaningful.

Mitch gave me far more than I ever could have given him. His coaching experience and life experiences far eclipsed mine and my fellow coaches. But he openly and eagerly accepted our triathlon training program as the legendary coach again became the learned athlete. Mitch worked hard. He was dedicated to his training and to the mission and never lost sight of his main source of inspiration; “his girl”. When Mitch was at a team practice, you knew it was going to be a better and more meaningful practice.

As we sat in the funeral service and heard wonderful heartfelt stories and thoughts from friends and family, I realized that Mitch Kline had created the mold by which we should all both emulate and follow. Catch phrases echoed in my head like the old “Be Like Mike” Michael Jordan ad campaign and were substituted with “Be Like Mitch”.

My thoughts and prayers remain with the extended Kline family. Thank you for sharing Mitch with us. I feel so lucky to have known this man even if for a few short years. The Cantor said it best in his opening remarks at the funeral service when he said; “the world needs more Mitch Klines”. Mitch Kline was a good man who left behind a monstrous footprint. It’s up to us to remember him and carry forth his legacy in any way we can. And we will.

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