The Loneliest Road

They call it “The Loneliest Road In America”. Highway 50 in Nevada stretches across vast amounts of pure openness. Miles and miles with no houses, no buildings, no people. No gas or convenience stores, not many places to get a cup of coffee and all you hear when you stop and look at the many Historic markers is the breeze blowing. At one point where I stopped however a military jet passed no more than a few hundred feet directly over my head so I guess the roar of that thing certainly woke me up from the slumber of driving a long stretch of road. They use this area to train “Top Gun” candidates and the brief glimpse of them roaring by was something to see for sure. From Fallon Nevada to Eureka it is approximately 180 miles with only the little community of Austin (population under 200) about dead center in between. Why would one choose to travel this road? For me the answer was very simple and planning to take this highway was planned from the very first time I saw it on the map.

There is another lonely road I should tell you about. It’s called a Rare Cancer diagnosis. As I wrote in my brochure, when you get a cancer diagnosis (ANY CANCER) it can be devastating. But when you have been diagnosed with a rare and strange type of cancer your world can get pretty lonely. You will struggle to find the much needed answers you are seeking about your disease. You find that Doctors and medical professionals have little information for you especially if you live in a rural area. You might find yourself trying to reach out with others with the same diagnosis only to find there are none in your area and very few across the country. It leaves you wondering why you were chosen to carry the disease. There will be no special support group for you. You soon realize all those pink ribbons that you see everywhere have nothing to do with the disease you have. The pink ribbon folks have done a tremendous job in bringing awareness to breast cancer. There have been many advancements in treatment for this type of cancer and of course there is still more to do. Rare Cancers get little or no funding for research into new therapies and drugs that perhaps might help you. Even when you find a newer treatment you might find yourself not only battling a cancer diagnosis but battling with your insurance provider as well to cover such costs.

This past week I had the opportunity to meet a man from Bend Oregon. Mike Houska was the first person I had met face to face with the same cancer as I have (Adenoid Cystic Carcinoma). I have met others from around the USA and the world through social media but Mike was the first face to face encounter I had and I have been carrying the disease for 12 years now. Mike is a true champion for our rare cancer. He has pension for researching things. He decided he would seek other treatment options rather than have is upper palate removed which would leave him living in a completely different world for the rest of his life. The treatment he chose is called Carbon Ion Radiation. This type of treatment was developed right here in the United States. How wonderful right? Wrong! Even though Carbon Ion was developed here, there is no Cancer Center in the United States which offers it. Mike traveled to Japan at his own expense to have this treatment. There are also places in Germany, and Italy and few others but not here. I have learned that the Cancer Industry is sometimes bigger than the disease itself. When that happens it becomes more about the money than the disease. I won’t rant much about my thoughts on that but here is a link to a story about Carbon Ion Radiation if you wish to read more about it. https://bioengineeringtoday.org/therapy/future-carbon-therapy. Sometimes I wonder if I will live long enough to see it happen here or if I would even be a candidate. I for sure cannot swing the cost to go the great distance to get such a treatment so for right now I’ll keep Ridin On to the lonely roads in America meeting others who struggle daily to find the answers in a lonely world called Rare Cancer.

The people I am meeting out here are amazing. Many with a breast or prostrate cancer diagnosis but not many from the Rare Cancer family. The bike seems to be the conversation starter in most places. Before heading out on the Loneliest Road I met some people in Fallon Nevada while having breakfast that were truly amazing. One was a retired Doctor (GP). He had never heard of ACC but he took my flyer and was going to research it a bit. Real nice fellow. When he left another man stood up and came over to me. He had taken my website information off of my bike while coming into the little restaurant and by the time he spoke to me he had already read my story on the website. He grabbed my breakfast bill and offered to pay. What a nice gesture. Another couple stopped me while in the parking lot, wished me well, took a brochure and off I went on the Loneliest road in America. I continue to be Blessed on this journey. Not sure where my lonely road will be today but there are many to see and I won’t let a little Rare Cancer stop me. Ride On my friends………