Tuesday, March 19, 2013

Standing among giants!


I have just returned from a weekend of spoiled and blissful treatment while attending the 1st annual Volunteer summit for the Melanoma Research Foundation held in Washington, DC.  Yes, Washington, DC.  I LOVE Washington, DC and I love to travel so I jumped at the opportunity I had to get away from my world in NY.  I was most interested in learning about Mile For Melanoma, a fundraising program as part the MRF Foundation, so despite tons of doubting self talk going on inside my head, I hopped on the train and off I went.

So after settling into my luxury hotel room (ok, clearly...anything that entails matching sheets, folded towels and warmth is luxury in my world), I blissfully slept and was ready for what my weekend would bring.

As soon as I walked to the elevator and met 2 conference attendees, I immediately knew all those self doubting thoughts in my head were wrong...this was where I belonged.  Not only was I now putting faces to the email names, I recognized I was sitting among giants.  I was sitting among cancer brothers and sisters.  I was sitting among my own kind.  People just like me who live with cancer, people who know what it feels like to be a warrior and a survivor.  I sat among beautiful battle scars, stories of life and death, brave choices and encouragement.  As each person introduced him or herself ..it didn't matter if we were from Los Angeles, CA or Kennebunkport, ME...we all were connected.  We all had been touched by the ugly monster called Melanoma. We instantly became soul mates.

Steve Silverstein (MRF chairman of the board), Mary Mendoza (MRF national director of volunteer services), myself and Tim Turnham (MRF executive director) 
So as Tim, Mary, Lauren, Carolyn, Jena, Torrey and Shelby  put up with our constant need to share our stories and connections with one another, we were instructed on how to fulfill our duties as advocates, fundraising champions and visionary warriors in our own rights, helping to move forward the mission of Melanoma Research Foundation and Miles for Melanoma. Their excitement and knowledge was contagious.  Laughter and ideas were being shared everywhere and this was what we all needed.  We needed a vision and a vision we received.

Tim Turnham, Executive Director of MRF hared a brief history as to where MRF started:  

The Melanoma Research Foundation was founded in 1996 by Diana Ashby, a melanoma patient.  Diana created the MRF after three years of battling the deadly cancer, a period in which she grew increasingly frustrated with the ineffectiveness of the current medical treatments for melanoma. This time also marked the emergence of Diana's especially strong sense of compassion for other melanoma patients, a trait that became the catalyst for her actions in the final year of her life.
After the tragic loss of several close friends to melanoma in the early months of 1996 and the third recurrence of her own tumors that summer, Diana's frustration turned to determination and she began to investigate alternative therapies and trials for promising new drugs.  She discovered that the research and development of such new treatments were often stalled due to inadequate funding.  The founding of the MRF was the result of Diana's struggle and will to make a difference. 
 Taken from the MRF website       History of MRF
Did you know.....

Melanoma is the fastest growing cancer in the United States and worldwide.
  • You will have approximately a 1 in 50 chance of developing melanoma throughout your lifetime. 
  • The incidence of people under 30 developing melanoma is increasing faster than any other demographic group, soaring by 50 percent in young women since 1980. 
  • Melanoma primarily affects individuals in the prime years of life, is the most common form of cancer for young adults 25-29 years old and the second most common cancer in adolescents and young adults 15-29 years old. 
  • Although melanoma is most common in Caucasians, melanoma can strike men and women of all ages, all races and all skin types. In fact, did you know Bob Marley died from malignant melanoma???
As the weekend progressed, it was becoming obvious that my rare disease was truly a gift of life. My uncle was diagnosed with melanoma at the age of 34. He was a farmer in upstate NY and the mole on his arm, which was exposed to sun all the time, was removed in his doctor's office. What they didn't know about melanoma in the 1970's was how to properly treat moles and worse yet, melanoma was a death sentence. There was, and remains still today, no cure for melanoma. My uncle left behind a young wife and daughter which filled my family with sorrow and unanswered questions.

Fast forward 30 years. I was 33 when I was diagnosed with Choroidal Melanoma, a rare ocular melanoma. When I heard the word "melanoma", I heard death. Cancer had taken every member of father's family I knew but this was the first time that there was a commonality of cancers in our family history. For this very reason it sucked the air out of my lungs. I only knew death associated with melanoma.

Through my interactions with other summit attendees, I connected with their stories. I knew their heartache from both sides- both as a family member of someone who had died from melanoma but also as a patient recently diagnosed. My gift now is that although I faced death head on,  I am also right on the edge of life, love, hope, joy and promise. There exists opposition in all things...so too is my cancer. My uncle died of melanoma. I am living with melanoma. God has provided me with the tools and support necessary to tell my story. This is why I am alive. 

As the teacher was being schooled, my heart started opening to possibilities. The motto for the weekend became "Think REALLY BIG and then think really small". I personally have a goal to partner up with my local triathlon club and develop a MRF triathlon. This would be a HUGE undertaking but again...Think REALLY BIG matters and I can certainly start by thinking really small.
So...thank you Melanoma Research Foundation. You have given us some wind under our wings. We hope to make you proud!


        1 comment:

        1. I started with melanoma removals about 30 years ago. I was raised in the sun at Tybee Island, Ga. I am 72 and my first sunburn (my mom told me was at six months old). She cried for 3 days because it was an overcast, gloomy day and she had no idea of glare burn. Melanoma cancer was as distant as the sun and no one (at least as far as we knew) was aware of the number of years it sometimes takes to develop in ones body. I have had a minimum of 20 full blown melanomas removed surgically and hundreds of basil cells.. My last melanoma removal was a level 4...4cm in the top of my head and 17 lymph nodes down the side of my face and in front of my ear. Fortunately all the surgeries I have had have been successful. The key is early detection. I am of Irish decent, raised in the Southern sun and did not use sun screen (we didn't even know what sun screen was). We would use baby oil to get more sun. Today it is a no-no to live in the sun and early detection is the answer to early melanoma damage. I have no medical degree but I can detect skin damage on folks and have saved several in my circle from bigger cancer problems had they let them go untreated.