Bret Hoefen was positive the tumor in his ankle wasn't serious.
"I was sure they could just cut the tumor out and do whatever treatment was necessary," he said.
A 1997 Wayland-Cohocton graduate, Hoefen, 32, was diagnosed with clear cell sarcoma in June 2010. The cancer spread through his leg by November.
The American Cancer Society defines clear cell sarcoma as a rare cancer usually in the tendons of the arms or legs. It shares some features with melanoma, a cancer developing from skin cells, but doctors aren't sure how it starts in parts of the body other than skin.
The diagnosis surprised Hoefen and his wife, Shannon.
"We didn't have any experience with this," added Mrs. Hoefen. "I just thought this is something that can be cured. You hear about other types of cancer and people surviving them. You think it's the same thing," she said.
Doctors removed the first tumor from his ankle in June 2010. Another tumor was removed from his thigh later that summer.
It was after the first tumor was removed when the seriousness of the cancer hit home.
While undergoing radiation before Thanksgiving, Hoefen felt a lump in an already radiated area. A scan showed tumors in his calf and another tumor in a lymph node in his upper thigh, he said.
Doctors said he had two months before the lymphatic system in his leg was blocked and it became too painful to walk, said Hoefen.
There weren't many available treatments. The leg was already fully radiated and chemotherapy doesn't work on clear cell sarcoma, said Hoefen. Amputation wasn't an option because the cancer had probably spread to his organs.
Doctors suggested Hoefen go to the Dana-Farber Cancer Institute in Boston for clinical trials.
Hoefen had been preparing himself for bad news.
Armed with a sense of urgency, Hoefen decided to stop working so he and his wife could drive cross-country.
They started in late November, and visited Washington D.C., Orlando, New Orleans, and other cities.
Hoefen said the pain in his leg increased over the trip. After riding his motorcycle for most of the early stages, he's slowed down to riding it every other day.
"My upper leg is swollen and it's hard to walk on. It's best to keep the leg elevated, so the days after I ride are difficult," he said.
While on a break from their drive, the Hoefens are waiting to hear whether he was selected for a crizotinib trial starting Dec. 30. According to the Dana-Farber Cancer Institute, crizotinib is a new experimental drug used to treat cancer.
If he is selected, he would have to take crizotinib twice daily. Every two weeks he would fly back to Dana-Farber for tests.
"If the pill is effective, I'll stay on it. If it isn't, then I'll get back on the road until I can't do it anymore," he said.
Hoefen said he thought 12 people with clear cell sarcoma were already taking crizotinib, and that three had stable, or not growing, cancers.
Despite the low percentage of success, they haven't lost hope.