I am a Special Agent, Father, Husband, Son, Brother, Uncle, Friend, Coach and Patient and the University of Colorado Hospital. In 2009 my wife, Dana, started bugging me to see a dermatologist about a mole on my ankle. I never in a million years expected that visit to the dermatologist to be the start of a battle with a cancer that would spread to my lymph nodes, brain and spine.
Initially, my diagnosis was Phase IIIa melanoma. I was 37 at the time and our twins, Audrey and Luke were 18 months. I had so much to live for and other than this melanoma, I was healthy and strong; so, I went full on attack and elected the most aggressive treatment available to me. The treatment was called biochemotherapy. It was brutal and intense – honestly, I really don’t remember much else.
After completing biochemotherapy, I went back to living. I got into the best shape of my life, bought a motorcycle, hiked, camped, and went to work. I coached a t-ball team, helped-out as a boy scout leader, taught my kids how to ride their bikes – normal dad stuff.
In late summer of 2014, my dad died. Growing up as a kid, I always wanted to be just like my dad. Even as an adult, I still looked towards him as my role model. At the age of 75 he still played on a basketball team and always had the energy to play with my kids. I was shocked and devastated when he got sick and passed away.
In the months that followed my dad’s passing, I wasn’t myself. It had been 5 years since my initial cancer diagnosis and all my scans had been clean. Melanoma was far from my mind and I thought the way I was feeling was just part of the process of grieving.
As it turned out, the melanoma had metastasized to my brain. In January 2015, scans showed that I had 4 brain tumors. Doctors were able to eradicate 3 of the tumors with Gamma Knife radiosurgery but the 4th tumor was too large for Gamma Knife and required brain surgery. I had brain surgery, started taking targeted therapy medication and went back to living my life for the next 10 months until the medication stopped working. New scans showed that I had 3 new brain tumors. Doctors treated these tumors with Gamma Knife, discontinued the targeted therapy medication and put me on immunotherapy infusions. A few months into this and one of the tumors that had been previously treated started to enlarge; I had to have a 2nd brain surgery.
In the summer of 2016, a few months after my 2nd brain surgery, scans showed that melanoma was now in my spine. I had radiation and started on a clinical trial. Within months, I started experiencing back pain. Cancer had returned to my spine and I needed surgery. After the surgery, I experienced a major complication; my intestines perforated and I almost died. I had to have emergency surgery and an ileostomy. If you don’t know what an ileostomy is, trust me, it was awful. With this complication, I could not be on any cancer treatment and so in early 2017, the cancer returned to my spine and I had to have my 2nd spine surgery and 2nd round of radiation. A few months later, I had surgery to get rid of my ileostomy; which was great but I’m still not the same, at least as far as my guts are concerned.
Whenever I meet a new doctor who has seen my chart but never met me, they are always surprised. They tell me that I look a lot better in person than I do on paper and that I am lucky to be alive. I have a tremendous support team. My wife Dana has been by my side every step of the way and I truly don’t think I would be alive if it weren’t for her. She is amazing.
This past few weeks have been rough. My most recent scans show a new tumor in my brain and enlarging tumors in my spine and lymph node. I will have Gamma Knife tomorrow to take care of the tumor in my brain.
As for my spine, the surgeons and radiologists that I have consulted with are concerned that a 3rd surgery or 3rd dose of radiation to my spine could cause permanent damage. My radiologist has referred me to Memorial Sloan Kettering in New York. MSK recommends proton therapy as the safest way to alleviate the tumor on my spine. Unfortunately, my insurance does not agree and has deemed this as “not medically necessary”.
“Not medically necessary” Hearing these words has been shocking and stressful. Up until now, insurance has always paid their part and I have always paid mine. I will appeal this decision, but in the meantime, a big part of what has kept me alive so far is moving forward based on the recommendations of experts. I will not let this slow me down and am moving forward. I have my initial appointment at the proton therapy center on Friday.
As for the lymph node, my oncologist has referred me to MD Anderson in Houston where I would have surgery to remove the lymph node and hopefully will be a candidate for their TIL program – more on that later as we are still working on getting this moving.
When I sat down to write this, I didn’t intend for it to be so long. But then I guess it has been a long journey. We’ve had so many friends and family help us with childcare, meals, shoveling snow, mowing our grass, praying and taking the time to ask how I am doing. People Dana and I didn’t really know at the start of this have stood by our side and have become our best friends. The support we have received has made all the difference.
Now as the cancer is progressing, and we are having to travel out of state to get the medical care I need, Dana and I are dealing with coordinating three different hospitals in three different states, travel, insurance, child care, missing work. We are overwhelmed, scared and stressed. A family member reminded me that there are many people out there who don’t live close but have asked what they can do - they can’t bring me dinner or watch my kids, but want to help – so, if you are one of those people, maybe you could help with this and check back every once in a while, to see how I am doing
Some pictures from 2009:
Gamma Knife Radiosurgery - this is what I have to look forward to tomorrow!
After brain surgery - the baseball team I help coach signed this bat for me:)
This was my first of many infusions!
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