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!


        Saturday, March 9, 2013

        Spring in my step...maybe?

        Once a month, I set everything in my world to the side.  For one day, I am not a mom or a daughter, not a teacher, athlete, coach or friend. For that one day, I am a patient.  For that one day, I have the monthly reminder that I live with cancer.

        Since there are so few ocular oncologists, I make the trek to NYC which usually turns into a full day 8 hour trip when it is said and done.  I have done it now so often, I don't even bat an eyelash at it (no pun intended). When I started going to Manhattan, everything was so new and overwhelming.  I had to not only navigate the new world of cancer but also planes, trains and automobiles...and usually with dilated pupils!  But, true to my nature, I have figured it out and this upstate country girl has flourished in this new adventure...and here I am to share it.

          Today starts at the train station.  Despite Poughkeepsie's CRAZY roads (who was the civil engineer who designed them??), it has one of the most beautiful train stations with a gorgeous view of the Hudson and of course, the Mid Hudson Bridge.

        And it despite how ever many times I have been there...and any time of the year, it still takes my breath away.  There is nothing grander than Grand Central Station.  It still remains one of my favorite places in NYC.  After spending years in Europe, it is as close to touching my international heart as I can presently get.  I love hearing all the different languages and the food, oh the food!  Just take a look!

        Of course, the food and Grand Central Station are not the purpose of my trip.  They are part of the adventure!  So, from Grand Central...it's off to my second home!

        Every month, we find something new...a year ago, I was involved in a clinical drug trial for Lucentis and all of us in this trial had wonderful results.  In fact, many of us had a restoration of vision.  Unfortunately, the FDA did not continue this trial and I, along with others, were forced back onto a less effective and significantly cheaper drug called Avastin. The trouble with Avastin is that over time, it loses its effectiveness.  For now, it is working but I believe we are on borrowed time.  For the last 2 months, we have watched tiny aneurysms develop in my retina, which clearly indicates the dosage of Avastin is on it's last legs.  I have one more step up in dosage...after that, options are significantly limited.  Luckily, I was towards the back of the pack when it came to transitioning back to Avastin from Lucentis so there are a couple of patients ahead of me in this adventure, acting as guinea pigs and helping us determine the best course of action.  For now, I am adjust to the change in my vision...and secretly mourn not having Lucentis as a treatment option. 

        Look deep into my eye(s)...ok, maybe not!

        For now...things are stable and we will keep them there as long as we can.  Every six months, I have a thorough exam which includes ultrasound, angiogram and more indepth scans, usually involving both eyes. Today was fairly simple...one scan, a couple photos of my tumor, measurement of the pressure of my eye, vision test, injections- one on the surface of my eye to numb it and the second,  Avastin, into my eye.  After about 2 hours, I am free to go back into the city life.  Surprisingly so...today was a quiet day in the office.  Most people have avoided coming in today due to the incoming snow storm.  NYC was predicted to have a dusting to 2 inches of snow by morning...where I live, 6-8 inches.  I am not scared...bring it on!  I live with cancer!

        One of the best part of being part of Dr. Finger's office family is that everyone knows me. They always ask about school, my children and races I am scheduled to run.  And I know about them...I know whose son was married the same place I vacation.  I know about recent engagements, marriages and the birth of babies. I know the hopes of the new doctors as we share stories and what countries the visiting doctors are from.  I know the office's recommendations for lunch, candy and cultural events.  And I know they have my back.  I know they are vested in my care. I know this one day out of the month is worth it to me!

        So, as I head back north, the snow starts falling.  It looks to be the last snow fall of the winter season or so we hope.  Spring is right around the corner and all of us in the northeast are ready to have some green grass and flowers back in our lives.  I reach this part of the year and always reflect upon how grateful I am for the new year and the fresh start. So...off to home for another month. Green light and smooth sailing for just a little while longer.  

        Here comes the snow!