Running for my Life

In February of 2009, I was diagnosed with incurable, metastatic Medullary thyroid cancer, a rare type that had already spread into my lymph nodes. I am fortunate enough to have had stable disease for the past five years. My tumor growth has been minimal since my diagnosis and my hope is that, by the time the cancer decides to move, we will finally have an effective drug treatment. The cause of my cancer is a genetic disorder called Multiple Endocrine Neoplasia type 2a (MEN2a) and I was diagnosed with this at the same time that my Medullary thyroid cancer was found. My disorder also causes tumors of the adrenal glands called pheochromocytomas and a condition called hyperparathyroidism, which affects blood calcium levels. Every day, I wake up, brush my teeth and go to work just like anyone else. Every night, I get under the covers and go to sleep just like everyone else I know. But my life is different.  Every morning I wake up knowing that I have a genetic disorder that causes cancer. Every night, I go to sleep knowing that my cancer doesn't have a cure.  My disease never leaves me and I carry it in my back pocket everywhere I go.

I don’t know what I would have done without support and information when I was first diagnosed. It was life saving information that led me to an expert that knew how to monitor and manage my disease and it was support and kindness from people that saved my sanity when I was at my lowest of lows. AMEND (The Association for Multiple Endocrine Neoplasia Disorders) provides both of those things for people with neuroendocrine tumors and disorders like mine. This year, AMEND, an organization based in the UK, officially became a nonprofit in the United States! I am so excited to be a part of AMEND USA, an organization that helps people navigate their way through the difficulties of a scary and life jolting diagnosis.

On November 23rd, 2014, I will run the Philadelphia Marathon to raise money for AMEND USA in honor of every person that has ever been told they have to live with this disease. I will run for children affected by MEN 2b, another form of Multiple Endocrine Neoplasia that causes a very aggressive form of Medullary Thyroid Cancer. No child should ever have to deal with the effects and challenges that come with this disease. I will also run in memory of my friend, Liz, who died of Medullary thyroid cancer in December of 2012, just before Christmas. Liz was 28, a young Mother and had advanced Medullary.

I don’t know why I am alive and Liz isn’t. I don’t know why I am able to train for a marathon and so many people are too sick to try. I don’t know why this cancer has to be a part of my life and I don’t know why I had to hear the word incurable. I don’t know any of these things. What I do know is that I can run despite my cancer and my legs and my heart will carry me on November 23rd. I know that I have an opportunity to make something right when everything in the world seems wrong sometimes. I know that I am grateful for that and I will never forget it.

Please help me help myself and thousands of other people that are affected by neuroendocrine tumors and disorders every single day. Every dollar counts and your donation, no matter how much, would mean the world to so many of us.