Hello, my name is Todd and when I started this ride it was pretty much about me, about my response to having familial adenomatous polyposis (FAP), a desmoid tumor and having spent 25 years without a colon. Also, my father lost his life to colon cancer via FAP at the far too young age of 32. Which, very much makes colorectal cancer a ride cause. Turning a passion for motorcycles into a way of service to others who have the same diseases that have so affected my family and me.
In 2012, DESTINATION X RIDE hit the road on it’s maiden voyage. A 26,000+ mile/5.5 month barnstormer of a journey. On it, I did my best to spread awareness for the aforementioned causes. Along the way, I was fortunate enough to meet a number of fellow FAP and desmoid tumor survivors, as well as many colorectal cancer survivors. I also networked with people from various colorectal cancer organizations. Every single one of those connections have brought me to where I am today. In the middle of a very focused and driven DESTINATION X RIDE.
Over the past two years, the project has evolved into the DESTINATION X RIDE you see here. As I prepare to re-launch the project and the website, it’s very fitting that I am hitting the road on a 3-day/2,000+ mile journey to the Get Your Rear In Gear 5K in Des Moines, IA. Which starts from present location in the San Francisco Bay area. Which has me leaving this page as a work in progress until after I reach Des Moines.
I very much look forward to connecting with the survivors at this next DESTINATION X RIDE destination and continuing to evolve this page, this site and the ride when I get there.
SO NOW THE TIME HAS COME TO RE-LAUNCH THIS SITE AND THE RE-CONFIGURED DESTINATION X RIDE.
Okay, so I made it to Des Moines for the Get Your Rear In Gear 5K just in time to meet and photograph some wonderful survivors. I cannot wait to receive their survivorship stories.
NOW FOR SOME BACKSTORY. WHAT DROVE ME TO THIS RIDE.
My family and I have been umm blessed with FAP and related conditions forever it seems. Well, actually, since I was seven, when my father was diagnosed with FAP. By that time it was really too late for him. It had already turned to cancer. For the next five years of his life he was in and out of City of Hope in Los Angeles. He underwent surgeries and all of the other typical cancer treatments of that time. He passed away at the age of 32. I was 12. During that time my oldest sister Kim and I started having all of the oh-so-pleasant GI prep and tests that were en vogue back then. Looking back, it seems quite primitive. A few years later my youngest sister Laurie was fortunate to join in the good times.
Flash forward to just after I graduated from high school in 1985. That summer, my sister Kim and I each had a total colectomy. We had the procedure done at a hospital in Marshfield, Wisconsin. The surgeries were successful. Well, as successful they can be with a hereditary disease like FAP. The summer was spent recovering and getting to know our newly altered digestive tracts.
In 2007 and (I hate to say it) after more than a few years of not keeping up with regularly scheduled GI exams, I was having an issue with the life long ramifications of the disease/s. My mom and youngest sister Laurie performed a bit of an intervention on me. It was high time I had my what was left of my colon examined. I was quite scared to say the least. Also, part of the reason I did not have exams done for quite some time was that I had been freelancing for a number of years. It tends to be a tad difficult to get health insurance with a pre-existing condition in freelance-land. At my mom and sister’s urging, I had a sigmoidoscopy done. Many polyps were found. A few were over one centimeter in size. The doctor strongly suggested that I have a J-Pouch procedure done.
In April of 2008 I had my j-pouch surgery. Which was unsuccessful. THE DETAILS. After I was opened up, they found a desmoid tumor that was in a location that would not give them enough small intestine to work with to do the procedure. This same desmoid is what caused the stricture in my ureter. So while my urologist was putting a stent in my ureter, my surgeon was talking to my mom, step-dad and sister. My sister was conferenced in by phone. She lives in Southern Illinois. The surgeon put it to my family to decide what to do. They could give me permanent ileostomy or go with other options. My family decided that it was not fair to make such a decision without my having a say.
It was decided that an oncologist would be added to the mix to treat the desmoids. That combined with regular monitoring of what is left of my GI tract. And of course there is the indefinite ureter stent situation.
Basically, I have had my GI appointments which include sigmoidoscopes, endoscopes, had my ampulla removed because of pre-cancerous tissue, etc. I have seen my oncologist regularly to treat and monitor desmoids. I have had to have the ureter stent surgically changed out every 3 months since 2008. Now I have a stainless steel stent. It is supposed to be able to stay in for a year. Yee-haw for me. All of this is an ongoing indefinite situation for me. So basically that is my FAP/desmoid tumor story to date.
Yes, I am missing a colon and other parts, have a ureteric stent in me, deal with pain/bleeding on a regular basis and am constantly dehydrated. But after all, this ride is an adventure. I have lived most of my life sucking it up and I’m not about to stop now. I am fully committed to the Mission.
So hold on tight and try to keep up.