Darien family bikes for survivorship
Published 9:56 am, Thursday, July 17, 2014
"Nobody ever thinks about the cancer survivors," Kiner said. "Surviving the cure is part of staying a survivor."
There are an estimated 13.7 million cancer survivors in the United States, according to the CT Challenge.
"After I went through my (chemotherapy), there was nothing there," Kiner said about options for support after recovering from cancer. "After you were done, the oncologist's job is to cure you of your cancer and save your life and that's not necessarily all you need, as much as that's the critical point, there's nothing past that critical point of treatment.
"There was nothing, there was no support group, there was no one to talk to."
Kiner, 52, said after she was cured of her breast cancer, she was sent to the chapel at the Greenwich Hospital for support and to overcome the anxiety that came as a result of being a survivor.
But that wasn't enough, Kiner said.
"Afterward, it was now, what do I do?" Kiner said. "I've gained weight, my bones hurt, my joints hurt, my hair fell out. There are so many side affects from all this chemo. Psychologically, you're worried every day that (the cancer is) not gone, that it is coming back, and there's no one to talk to about that. The only person you can talk to about that is your oncologist because that's the only professional that's been in your life.
"So, it was really exciting to me when the Connecticut Challenge started the programs for survivors after their treatments."
The Connecticut Challenge was founded in 2005 by Fairfield's Jeff Keith, who was diagnosed with bone cancer as a child. Keith had visited the David B. Perini Quality of Life Clinic at the Dana-Farber Cancer Institute in Boston, that specialized in pediatric cancer survivors. Understanding that such a clinic was needed for adult cancer survivors, Keith worked with the Yale Cancer Center to develop survivorship programs.
"People just flocked to them because there's nothing else out there," Kiner said.
In 2012, the CT Challenge renovated a former radiology treatment center into the CT Challenge Center for Survivorship in the Southport section of Fairfield, one of the first of its kind, as a place where survivors could go for emotional, physical, financial and nutritional support.
Kiner was diagnosed with breast cancer in 2003, after spending two years of watching a lump on her breast grow. There is a history of breast cancer in her family: her mother and grandmother died of the disease. Kiner said she needed to convince her doctor to perform a biopsy on the lump.
"By the time they did the biopsy, (the tumor) was 10 times the size it was when it was initially found," Kiner said. "It had spread into my lymph nodes."
Treating cancer often causes many problems, Kiner said. The medication Kiner takes to keep any potentially cancerous cells at bay has caused the joints in her hands to degenerate over the last 10 years. She can't make a fist with her right hand, which created a problem for riding a bike since she can not grip the handle bar. She had to adapt her grip by using her thumb.
"The treatments are extremely harsh," Kiner said, adding that often the long-term effects of the medications are unknown.
"For however many years that (doctors) have been trying to cure cancer, they've been trying to help people live through cancer," said Kiner's husband Bob Mazzone, who is also the chief operating officer of the Connecticut Challenge. "All the emphasis was getting people to live through cancer. Now, 20, 30 years after we've cured people of cancer, we're now seeing what it's like living through cancer and sometimes its not so nice."
The CT Challenge has expanded from the one location in 2005 at Yale to a host of hospitals and community organizations across the state.
Survivorship programs still exist at hospitals around the state.
The programs offered are adapted for survivors, Kiner said. For example, the trainers -- who have their cancer exercise training certification -- are experienced in cancer survivorship, and in a yoga class, variations are available for survivors of different types of cancer.
"As people live longer after cancer diagnoses, we're now starting to see the issues that come with surviving," Mazzone said. "A lot of the issues can be minimized with exercise and good nutrition."
The mission of the CT Challenge, according to its website, is to empower cancer survivors to take control of their health by offering credible information, comprehensive resources and a road map for them to live healthier, happier and longer lives.
"This is very safe and very private and it gives people the tools they can use to get back and move forward," Mazzone said.
The center has roughly 200 members, Mazzone said, and in 2013, 6,000 cancer survivors came through the doors of the Connecticut Challenge Center for Survivorship.
"Sometimes we have to educate the cancer survivor more than anybody else," Mazzone said.
In order to raise funds to support the CT Challenge center, there is the annual CT Challenge bike ride, in which Kiner and her two daughters, Sammee and Kasey Mazzone, will ride. Riders can opt to participate in a longer two-day ride which starts on July 25. The ride will start and end at the Fairfield County Hunt Club in Wesport.
Over the course of the last 10 years, the bike ride has raised more than $12 million for survivorship programs. Last year, the race brought in $1.8 million, according to Mazzone.
This year, 1,100 people are expected to ride in the bike event, which has 10-, 25-,50-,75-, and 100-mile courses. Kiner plans to ride the 50-mile course, while her daughters will do the 25-mile one.
One of the reasons Kiner became involved in the bike race was because she wanted to share with people that there is a center that is available for cancer survivors.
During her first year doing the bike ride, Kiner formed a team of 15 people from Darien comprised of fellow survivors, as well as family and friends. As the years went on, the team grew to more than 35 people from town and eventually joined with the New Canaan Connecticut Challenge bike team.
"We were rivals that came together for a great cause," Kiner said.
Last year, the New Canaan team, after swelling in numbers, opted to become its own independent team and Kiner joined Team Center, which rode in honor of the Center for Survivorship.
Sammee, 16, and Kasey, 13, have been part of the bike ride for the last eight years and have gone above and beyond the race to find ways to benefit cancer survivors and those going through treatment, such as through Make-A-Wish, Hope in Motion and the Pink Hearts, which provides free wigs for those who have lost their hair to chemotherapy.
"I saw my mom do it and one day I decided I should do it as well," Sammee said. "Everyone has their different reasons for why they ride."
Kiner said she refers to the center as a "cancer rehab."
"The support system is unique," Sammee said of the center. "Every survivor's experience is unique."
To donate to Kim, Kasey or Sammee's ride, visit http://2014ctchallenge.kintera.org and click "sponsor participant."
firstname.lastname@example.org; 203-330-6583; @Meg_DarienNews