© 2011 . All rights reserved. Road X

The Story.


The Idea.

Hello, my name is Todd. And, I have an idea. To do a solo yearlong ride across North America spreading awareness for causes I feel strongly about. Which includes Cancer (colon cancer took my dad from us when he was 32 and I was 12), Familial Adenomatous Polyposis [FAP] (My dad’s cancer came via FAP. Both my sisters, niece, nephew and I have FAP), Desmoid Tumor Research (I have an inoperable intra-abdominal desmoid tumor), MS (My sister was diagnosed with a few years ago), Native American issues (My dad was born and raised on an Indian reservation) and Rivers (I have always had a love for fishing rivers, so river health is very important to me).

My love for motorcycles began in 2002, when I bought my first motorcycle. It was a Ducati Monster. She has given me 53,000 miles of riding joy and a sense of freedom I had never experienced before.

This idea was inspired by a video series I had been watching, Long Way Round, which was created by Ewan McGregor and his friend Charlie Boorman. In the program, they wanted to ride motorcycles around the world. Along the way, they also supported UNICEF and other causes. BMW and many equipment companies backed their effort. They also did a follow up program called Long Way Down, in which they rode from London to the southern tip of Africa.

So, I had the big idea. Then it was time to give it a name. After some heavy pondering, Destination X Ride came to mind.

Now armed with the name. I am In the process of building the website. With the aid of my web doctor, John. Thank you man. This site is a tool, a multi-tool. To build awareness about the ride itself and all the causes it is intended to benefit.  This will be accomplished by constantly updated blogs, which will contain video, photography and my writings. Documenting every aspect of the ride. Well, almost every aspect. There are many avenues that will be explored. My advertising, graphic design, and photography backgrounds will definitely be tapped into. I have the ability to wear a lot of hats, or helmets in this case.

Shortly after I came up with the idea for this ride, my mom gave me the gift of another crucial tool for this ride. I asked her if she would tell the story of her family’s ongoing battle with Familial Adenomatous Polyposis. From a mother’s perspective. Chronicling how a family umm blessed with this disease has been affected by all aspects of it. From when my dad was first diagnosed with FAP to present day. She said yes, like so many other times in my life. An amazing literary result occurred. Kudos to you mom.

Well, that’s pretty much the jist of this Destination X Ride story. I am fully committed to making this ride happen. It feels so right to me. I need to do something that is bigger than me. Something that allows me to be able to give back. I have been so wrapped up in all my health issues in last four years or so. I honestly need to hit the road and try to spread the word.
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Now, for a little history.

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 the City of Hope hospital 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.

I then went on to art school to study Photography and Graphic Design. Kim still had another year of high school ahead of her. Laurie would end up having her colectomy done six years later in 1991.

I graduated from art school in1989 with a major in Graphic Design and a minor in Photography. This led me to pursue a career as an art director at an ad agency in Minneapolis. Enough with my resume though. I worked in advertising agencies much of my career. Eventually, I went freelance. Just to give you the jist of my background.

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. My sister Kim had this surgery a few years earlier. Her two children had the same surgery two years later. When my sister Kim had her surgery it was also discovered that she had desmoid tumors, which comes along with some cases of FAP. Double bonus for us. While Kim was opened up on table they found the desmoids. The location of said desmoids made it so the procedure could not be done. As she was about to be closed up her ureter was nicked by a scalpel. A stent needed to be placed into her ureter. Only because of the stent, they were able to perform the J-Pouch Surgery. Talk about a miracle mistake, as if the hand of God guided the surgeon’s hand.
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Anyway, back to me.

Because I did not have insurance, it was uncertain how I would be able, financially, to have the procedure done. My mom had the thought to explore obtaining assistance from the Indian tribe I am a descendent of. My dad was born and raised on the Menominee Indian Reservation. When this route was explored we found out that the tribe would indeed cover my medical costs, with the stipulation that I had to live within 30 miles of reservation. I moved back to the town I grew up in. My mom still lives there. The town is seven miles south of the Indian reservation.

There I was in smalltownville Wisconsin, three hours north of Milwaukee, where I had been living for years. I moved into my grandparent’s house. They had previously passed away. My mom and uncle needed renovations done to house in order to put it on market for sale. While I lived there I renovated up a storm, mostly by myself. It was quite the process and very taxing. However, it turned out to be quite rewarding. An impressive result occurred.

After the 90-day residency requirement, I was able to find the surgeon and hospital I wanted to perform J-Pouch procedure. My mom had found a surgeon that had, at one point, worked under the doctor that developed the J-Pouch surgery. He did his work at the University Hospital in Madison, which is three hours south of where I was living. Many trips back and forth would be ahead of me. So I made my decision, Madison it would be.

All arrangements were in order. The surgery date was scheduled for the third week in January 2008. In late fall I had to have a pre-op CT scan done. After the scan was done I received a call from the doctor’s office telling me that they saw something wrong with my left ureter and kidney. They needed to see how compromised my kidney was. My surgeon basically made it sound like my left kidney was dead already. I had a stricture in my ureter. So this is when my urologist came into the picture. The surgery was postponed. I had to have flow tests done to see the extent of kidney damage. The result of the flow test was that my kidney was not dead, however, it was definitely compromised. My right kidney was doing two-thirds of the work. I needed to have a stent put in my left ureter, which would be done at time of my J-Pouch surgery.

I was able to reschedule the surgery for April, a long wait that was frustrating. I had managed to get myself in a place to have surgery then it was pushed back months because of this other issue. It was definitely a trying time for me.

April came, and with it, my surgery. Finally. I was admitted and in the surgery prep area with all of the hospital staff coming at me. Paperwork. Etc. All the while I was thinking about the complications my sister Kim had with her surgery. I was extremely nervous. My surgeon gave me the pre-talk. Then the relaxing medication entered my veins. I was blurry minded as they wheel me into operating room, still with a tinge of the nervousness. And then, I was out.

I started to come out of anesthesia fog after surgery. Still very hazy, I reached down to feel the temporary ileostomy bag I would have on for six weeks between surgeries. It is a two-surgery procedure. I found that it was not there. I was quite upset. I still could not really talk. I could see a blurry figure walking by. In my slurred speech I asked where my bag was. The nurse was being vague. She was instructed not to tell me any details.

The details. After I was opened up, they found desmoid tumors that were in a location that would not give them enough small intestine to work with to do the procedure, much like my sister’s ordeal. These same desmoids are what caused the stricture in my ureter. So while my urologist was putting the 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. The standard M.O. in that situation is to go the permanent ileostomy route. It was decided that an oncologist would be added to the mix to treat the desmoids. That combined with regular monitoring of my GI tract. And of course there was the indefinite ureter stent situation.

I was in my hospital room, just put into my bed. I still didn’t really know what was going on at this point. Everyone was afraid to tell me what the deal was. I have tended to have issues with depression and continue to. So I was resting. I had been in my room for less than a half hour. A male nurse or tech or something walked in and said something like, “sooo, you’re going to be having chemotherapy I hear”. I freaked and immediately got up. Well, as immediate as somebody can be after just having such a surgery. Amazing what an epidural will allow you to do. I went for a walk. Did laps. It was then I was told what the situation was.

The seven days I spent in the hospital were trying. Not so much the physical aspects. The emotional. Speaking of emotional, getting a wee bit misty at the moment. Okay, enough of that. Basically, I have had my GI appointments which include sigmoidoscopes, endoscopes, had my ampula removed, 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 story to date.
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The spiel.

I know I cannot do this alone. I have family and friends behind me on this. I am in process of getting in touch with organizations within the causes I want to benefit. I also will need support. Contributions in whatever form they take. My photography will be available for purchase, which can be seen in the gallery section of this site. I have Destination X Ride t-shirts for sale in the DX Ride Gear section as well. I am really working hard to get all the pieces of this puzzle in place. That would be my spiel.

It is my hope that you will explore this website. Get a sense of what the Destination X Ride is. What it will be. And, all that it could be. Keep checking in. It will be continuously evolving. It is my quest to make it as entertaining as it will be informative.

So, hang onto your hats, helmets, do rags, boonies and headdresses. And enjoy the ride.
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  1. Posted 4 Mar ’12 at 11:00 am | Permalink

    Love the design of your web site. It is very much “alive”. Mine is very basic and managed thro face book. Easy for me to blog and post video and pictures. Your story is very moving, and it is guys like you that inspire the rest of us. I am lucky, with health, family support and great friends all over the world.. Have you come across Horizons Unlimited. A great web site for adventure bikers. ALL questions answered and world wide support from like minded bikers. Good luck my friend, i will be following your journey with great interest. Be safe ! Jules

    • Posted 4 Mar ’12 at 4:07 pm | Permalink

      Good afternoon/evening Julian,

      Thank you so much for taking the time to view my website. Thank you for your “alive” compliment. It truly is a labor of love for me.

      I noticed your “Solo Bike Tour 4 Cancer” ride via a post by Charley Boorman on his Facebook page. I think you’re doing a wonderful thing with your ride. An inspiration you and your wife are. I hope Jackie doing well.

      I truly hope I am able to get this ride on the road to spread awareness for cancer as well. Among the other Destination X Ride causes.

      I keep working at promoting this ride. It has proven difficult to get necessary support. I will continue to forge on with this ride idea. I feel with my heart that there is something to it. I can see it. It is my dream. I’m going to make it a reality.

      Speaking of dreams, I would absolutely love to get the Destination X Ride in front of Charley and Ewan. After all, it was their ride “Long Way Round” that inspired this ride in the first place.

      Sorry for my rambling Julian. I thank you for your interest in my ride. I will be following your ride. I know it will inspire me.

      All the best on every mile ahead,


  2. Drew McKnight
    Posted 8 Mar ’12 at 11:06 pm | Permalink

    Wow Todd,

    I MUST SAY that your story is both Interesting and informative/educational!!!! See……..I’m not that much younger than You are!! I’m 41 and I was given up for adoption when I was only two-weeks old. When I became older,I researched all that I could,to find where I came from and the “roots” from which I came from!! My Father was ALSO born and raised on the Menominee-Rez in Neopit. When I was 32 yrs. old,I traveled up to our Rez for the very FIRST TIME to try and locate him (as,at that time,I STILL had no idea if he was alive or dead!?!?) and when I arrived there,when I stepped out of my car……..everything seemed so surreal to me,as I kept “FEELING” that I had been here BEFORE for some reason!?!? Well,as it turned out,my birthmother (who was white),went to live with my Father and his family Neopit,when she was 5 mos. pregnant with me!!

    Anyway,my point IS…………is that since the age of 19,I came down with a very “BRITTLE” form of Insulin-dependent Diabetes which,like You,I have learned to live with as well!! ALSO Like You………I took an immediate LOVE of Motorcycles and riding them!! I Love Ducati’s and Triumph motorcycles (my Father once owned a 67′ Triumph Bonneville) so I believe I received my Love of two-wheels from HIM!! Lol. Anyway,getting back to the story………after visiting our Rez for any info. regarding him,I wasn’t given much to work with,but I DID eventually manage to track him down before traveling all the way back home to Ohio,disappointed!! I found out he was living in Green-Bay and he invited me to stop by and see him before I left for home so I IMMEDIATELY took him UP on his offer and met him the following day and he described to me in GREAT-DETAIL………how I came to be!! And That alone,was worth all the childhood Years I spent in Frustration and anger and confusion in wondering WHY the hell I was CHOSEN to live the life I was living?? Well……..after talking with him,it ALL seemed so very simple and CLEAR to me!! And since that time,We’ve both attended our Menom Powwows together and I’ve watched him,my bro-in-law and Sister dance in it as well!!

    To complete this exhausting story of mine…………I will simply say that I was VERY intrigued and truly humbled after reading about your story!! I MUST SAY that I truly wish You NOTHING but true SUCCESS with this endeavor and please know that You have MY Support (mainly Emotional support as financially……..I’m like the rest of y’all,and broke as a rusted junkyard bike!! Lol.) So I wish You NOTHING but the truly BEST in accomplishing your goals Todd!! All my Best to YOU and Yours!!

    Sincerely,Drew Waepew-Awaehsaeh McKnight.

    • Posted 9 Mar ’12 at 8:03 am | Permalink

      Good morning Drew,

      I must throw a WOW your way as well. Quite the story you have lived my Menominee brother. It is truly wonderful that you were able to reconnect with your birth father and establish a relationship. After so many years of frustration not knowing from where you came. A true gift.

      Perhaps if you are going to the next Keshena Pow-Wow, we can meet there. Also, maybe someday we can go hope on bikes and go for a ride on Highway 55 on the reservation. It is such an amazing stretch to ride. I used to do it quite often.

      Below you will find two links to blogs I have posted. One contains photos and video from the 2011 Keshena Pow-Wow. The other shows some video I took of Highway 55 while I was driving the stretch I loved to ride so much.



      All the best to you Drew,


  3. Drew McKnight
    Posted 9 Mar ’12 at 9:12 am | Permalink

    Thank You so very much Todd,for your comment!! It truly meant ALOT to me!! I would LOVE nothing more,than to Meet You sometime in the future as from what I read on here thus far,we Both seem to have ALOT in common!! Lol. The true LOVE for our Tribe and our LOVE for the open-road and the two-wheels that takes us there!! So far,nothings set yet,about this year’s Powwow. I have an
    8-month old little boy who I would LOVE to bring up there sometime as he has YET,to meet his grandfather in person and all his aunts,and cousins!! So YES………once I figure out if I’ll be able to make it to this years Powwow,I will DEFINITELY let You know!! Thanks again Todd!! It’s been a true-pleasure in meeting You!! All my Best to You and yours for the future!!

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