In December of 2013, my wife Terry and I were living in Prague where I had been working for four years. We had returned to the states for Christmas break and were looking forward to seeing and spending time with our family.
I had also scheduled an appointment with my dermatologist as I had a small pimple that turned into a cyst type bump on the top of my head. On December 23, my doctor took a biopsy and three days later I had a diagnosis of Spindle Cell Melanoma, a rare subtype of malignant melanoma. He advised that I get to a specialist immediately as it was large and very deep and needed to be acted on quickly.
Our family realized we needed to educate ourselves about this disease in order to better understand and prepare for the battle ahead. That’s when we discovered the Melanoma Research Foundation (MRF). The knowledge base on melanoma is quite extensive, and frankly a bit overwhelming so the MRF website was an invaluable resource for us.
The process from diagnosis to surgery with daily radiation treatments took three months. As we were planning our return trip back to work in Prague, I discovered a small bump just outside the radiation area. A biopsy confirmed the melanoma had already returned and further testing with a PET scan showed that the melanoma had spread throughout my liver and lungs. I now had Stage IV Metastatic Melanoma.
In 2014, that diagnosis had a very poor prognosis. My doctor said my best chance was a clinical trial that was being offered at Moffitt Cancer Center in Florida. We went back to educating ourselves on what all this meant! Then, armed with more information, I chose to participate in the clinical trial. With that choice, I knew that being a part of cutting-edge research in a clinical trial was just as important as finding a solution for my situation.
From June 2014 to November 2015, our time was filled with long drives to and from treatments, side effects, and a significant adverse reaction that resulted in a hospital stay. But, all of it was in the hopes that we were forging a path to a remarkable outcome.
On November 13th 2015, we finally had a reason to celebrate. We heard the words I wasn’t quite sure I’d ever hear, “Doug, your scans show no evidence of disease”.
Throughout my journey from Stage IV Melanoma to No Evidence of Disease (NED), I felt it was important to help others understand the value of education, research and advocacy for this disease. My experience on a successful—albeit challenging clinical trial—led me to develop a passion for ensuring that the necessary research continues to be funded and findings shared. I am thankful for the scientists, doctors and organizations that bring this disease to the forefront.
In retirement, I’ve taken up a role on the MRF Board of Directors and I am dedicated to helping the organization that is best positioned to educate patients and caregivers fund research grants to find a cure and build a strong, supportive network of advocates. As part of the board, I have the opportunity to contribute to a worthwhile organization that I am certain will make a significant impact in finding a cure for melanoma.
i don’t know if you remember we were going through a pay request. You were struggling to understand my paperwork which is hard to do anyway. I was and will always be behind you. You and your family are so nice, close, and Teri breaks me up from the first time we we met. she said she wasn’t worried about the house but insisted it had tohavea martini house was a refrigerator. I was very lucky myself, My doctor started cutting on my head and after the third time said, i had to go to an onclogist/plastic surgeon. I wasn’t too nervous but as i sat in the waiting room, i noticed all the books on the table were bibles. I realized then that i may be in trouble. When i went in the examination room the Doctor and his wife grabbed my hand so we could say a prayer. Then they asked if i wanted them to meet me before sugrery.( it took me awhile to understand) but i realized alot of his patients were in very bad shape. i was lucky it was very close to being a melonoma but had not broke through the final area. He had alot to make my forehead come back.I will always be at your (parties) , with the doctors and make contributions to the cause.
This is Brave: Education and Support for Patients and Caregivers | The Coolibar Sun Protection Blog
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