It’s hard to believe it’s been a month since our trip to Vermont and I haven’t been able to find the words to describe the experience. It’s one thing to read a promo that says, “participants will include patients, caregivers, families and medical professionals” and another thing to spend a week with a group like this:
A young Polish man whose Ewing’s Sarcoma primary site was almost identical to Bradley’s, without the lung mets, in remission and married to his chemo nurse.
Children currently in treatment or in remission from rhabdomyosarcoma, with their entire families, two of which traveled from Spain and Mexico.
Children with parents or siblings with sarcoma.
The first day, the children hid suspiciously behind their parents, eyeballing each other from afar. The next day they tested each other and started tentatively playing together. By the third day they were asking to spend the night together and sharing dining tables.
Many with lives in the balance, searching for answers and eager to connect in a meaningful way with everyone and anyone who might know any new thing, any gem that can help them and which they can pass along.
Those in mourning for recent deaths.
Those whose losses are further in the past and who dedicate themselves year after year to honor them in events like this one.
A woman with chondrosarcoma who was told to go home and prepare to die by a major cancer center, but who found a surgeon to perform risky surgery and not only was she biking, she was doing cartwheels.
Families in which more than one person has cancer or sarcoma, biking together.
People currently taking Gleevac for GIST (gastrointestinal stomach tumor). Gleevac is a fairly new drug that doesn’t cure, but keeps the sarcoma from growing - at least until the patient builds up a tolerance, which takes a couple of years. It’s important because it doesn’t have all the nasty side effects of most sarcoma drugs. They all had their hair, were of normal weight and athletically fit. Once I started putting the names, faces and stories together, I looked at these guys and asked “Wait a minute, are you telling me they’re on chemo NOW?” Yep, pills no less. Bradley’s treatment, the standard Ewing’s protocol, was positively barbaric, with no end of side effects. Gleevac makes it possible to live a largely normal life. From the patient’s standpoint, even if a drug doesn’t produce a cure, if it gets them the same state as the horrid stuff, it’s well worth the dollars and cents to develop it. Unfortunately it doesn’t work for Ewing’s.
When we needed a break from biking, we could hitch a ride in one of the sag wagons, joining one of three moderators of ACOR’s sarcoma support groups, unable to ride themselves but on the road with us, to be with their people. They'd known each other for years on-line and by phone, but had never met before.
There was the doctor, a survivor of childhood osteosarcoma himself, who came to speak with us one night about the current state of sarcoma research. He faced a pretty tough crowd, unhappy about roadblocks being put in the way of new drugs and the sad state of communication between diagnosing physicians/sarcoma centers/patients/patient advocates/surgeons/radiologists/etc. It’s sad when the patient knows more than the doctor and has to jump through hoops to get the info flowing, let alone action. His talk was actually pretty depressing. Seems like all the potentially good stuff is still years away and that’s assuming the money keeps coming in to support it.
Counting day-trippers, there were a total of 62 people participating during the course of the week, some for a few days, others only for hours. It was so much to take in. Since most days were spent riding, it was over coffee at breakfast, during rest and lunch breaks on the beautiful shores of Lake Champlain and Lake Dunmore and in the evenings back at the lodges that we picked up bits and pieces of people’s stories. Really, it took all week before I was sure I knew who everyone was and at least something of why they were there. This is one reason I made plans to meet with three of the people I had wanted to meet most (Truus, Dawn and Norma who wasn’t in VT) at Norma’s house in Virginia the next week. That’ll be in another post, as it stands on it’s own as another…..
Incredible, absolutely extraordinary experience.
My Top 10 Pictures from Vermont/NY