by Liddy Shriver

Ed. Note: Liddy died on Jan. 15, 2004. She is missed! Her family carries on her spirit and her mission: visit www.liddyshriversarcomainitiative.org.

I was diagnosed with Ewing's sarcoma in April 2002. I was 35 years old at the time – a bit young for cancer, and a bit old for Ewing's sarcoma. My primary tumor was in my tibial nerve in my leg; this nerve supports the calf muscles and stabilizes the ankle. The tumor resection surgery in July removed 8 inches of my nerve. Walking is painful due to the ankle bones rubbing. By August, we knew that I wasn't responding to the standard pediatric chemotherapy protocol. By November we knew that I didn't respond to the 2nd and 3rd line chemos, either. I had metastases in my lungs, and they continued to grow in number and size. My oncologist never gave us statistics. We found them in the medical papers and abstracts that we were reading on Ewing's sarcoma: “the 5-year survival rate is 5% for patients who develop metastases while on treatment for Ewing's sarcoma.”

So, it was time to start working on my list of things I always wanted to do. I have always been a fan of cycling. I like watching the races and I like being on a bike. On a bike, I get a sense of freedom that I don't get any other way. Plus, I don't limp when I bike. I always wanted to ride in a multi-day bike tour. It had to be somewhere flat, since I really only bike with one leg. And, I had to do it sooner versus later since my lung mets were already giving me some problems in breathing. Searching the Web helped me find a bike tour. I was searching for somewhere where it should be warm enough to bike in March. Using “March cycle flat” came up with nothing promising. However, “April cycle flat” came up with Cycle Zydeco, a 4-day, 200-mile bike tour starting in Lafayette, Louisiana. Since I lived in Lafayette from the age of 6, only moving after graduating high school, the tour seemed perfect.

I wanted to do more than just ride the ride for myself. After discussing it with others, we developed three goals: raise money for sarcoma research, raise public awareness of sarcoma, and raise public awareness of the critical lack of young adults on clinical trials. A group of seven family and friends joined me; we called ourselves Team Sarcoma. It turned out that 50-55 miles a day wasn't that bad at all for me. The first 40-45 miles each day were almost easy but I struggled with the last 5-10. The traffic was light, the quality of the roads was fair to good, the weather was great.

Was it a success? Definitely! We raised $13,500 for sarcoma research at Columbia University. Our efforts were discussed in several newspaper articles, mentioning sarcoma and the lack of young adults on clinical trials. Our "Team Sarcoma" t-shirts and my leg brace led to conversations between members of the team and others on the tour. I renewed friendships with old neighbors and friends. Finally, it provided me, my family, and friends special memories in what has been a difficult year.

Perhaps the best thing about the tour was that, for four days, I really didn't feel much like a cancer patient. My last chemo was far enough in the past that I felt good. There were no blood tests and no comments from Mom about how I really shouldn't be eating the fresh fruit or veggies because of neutropenia. No worry about scans and their results.

Some of this feeling was false since I ended up getting pneumonia (while half of Team Sarcoma just got a bad cold), but it was wonderful while it lasted.

The next tour will be in Denmark, where I lived for two years before Lafayette and which is known for being flat. Team Sarcoma will be 30+ riders including all of my immediate family. I'm looking forward to the flat Danish roads with the old thatched-roofed farmhouses, and renewing friendships from when we lived there. We've raised over $50,000 for the Sarcoma Foundation of America as a result of this tour. Even though I'm battling chemo fatigue again, it's easier to get on the bike for my daily ride on the trainer. I can just close my eyes and see the rice paddies and wild flowers on the side of a long, flat Louisiana road and think of the flat roads that lie ahead.