You may be a Republican or Democrat. You may believe in God or don’t. You might like the Giants or the Pats.
But at some point, everyone knows someone with cancer.
Now there’s a place nearby right here in Connecticut that is geared solely toward helping people who have completed their post-diagnosis treatments and are in the ongoing survivorship in their fight against cancer.
The CT Challenge Center for Survivorship opened in early September in Southport, CT with the mission to empower cancer survivors to live healthier, happier, longer lives by creating and funding survivorship programs and research, offering resources, and building a community of support for people who have fought cancer.
I learned about the CT Challenge Center this past summer when my sister rode in the eighth annual CT Challenge Bicycle Ride, which takes place every July. A cancer survivor herself, my sister connected with people who were very involved in getting the center operational. One of those people was Jenn Lewis, a fellow cancer survivor and also a neighbor and friend of mine in Wilton. Lewis gave me a tour of the recently opened center, which she explained was the brainchild, and dream, of Jeff Keith. Lewis and I were accompanied by Julia Pemberton, the Center’s director of communications and public affairs.
A dream realized for a cancer survivor
Keith is a cancer survivor whose leg was amputated when he was diagnosed at age 12. An amazing athlete even then, his mother got him skiing shortly after he got his prostheses, and he went on to play divisional lacrosse at Boston College. He thought he’d put cancer behind him, until years later his wife suggested he look into the dangers of the medications he’d been given during treatments years earlier.
“Jeff went to Dana Farber [Cancer Institute in Boston]. At the time they had one of the only cancer survivorship programs in the country. He learned a lot about the toxic drugs he took would do. As he drove home, he thought about why there wasn’t a place like that [at the time] in Connecticut. In 2005, he decided to start that kind of clinic here, and the first CT Challenge fundraising ride was in July of 2005. In 2006, they gave $500,000 to Yale to start the first clinic,” Pemberton explained.
In 2009, Keith decided to devote his life to philanthropy and survivorship and realized he wanted to increase the reach of such programs beyond just Yale. This happened at a time when the Livestrong cancer organization had increased awareness of survivorship.
“People understand it more now, and they don’t pooh-pooh therapies, like nutrition and exercise, as having a role in preventing cancer and recurrence. So they shifted the funds to start incubating programs around the state beyond Yale, giving seed money to programs at different hospitals in CT, and growing the network to 18 centers,” said Pemberton.
At that time, Keith made it a goal to build a permanent facility as a program base. The CT Challenge Center now in Southport is intended to be a place where they could incubate wellness programs geared to survivors as well as develop research studies to help show the cancer community what kind of role wellness and survivorship programs can play in keeping people healthier longer.
“Jeff’s long-term plan is that not only will we create programs here but also that this model can be duplicated nationwide. This is what we’ve built in just three short years,” Pemberton said.
What programs are offered at the Center?
There are several programs offered at the Center: nutrition, including cooking classes in the teaching kitchen; a library with educational information and books that provides a place for support groups to meet; yoga and meditation — these classes are held in a large, glass-walled studio that multi-purposes as a space for seminars and workshops; fitness — survivors receive three free one-on-one training sessions with a certified Cancer Exercise Trainer on staff in the Center’s well-equipped fitness studio, and very reduced pricing (thanks to all the fundraising) on personal training packages thereafter; and a spinning studio, outfitted with regular spinning bikes as well as upright bicycles specifically suited for breast cancer survivors who need to stay in an upright position because of radiation burns and post-surgical healing.
Part of the philosophy of healing is also making nature part of the program. The Center restored wetlands adjacent to their building and are creating a meditation garden. “There is a very deliberate emphasis on relaxation. You can do yoga or meditate outdoors and there will be a brick pathway as part of a brick fundraising campaign. That also makes it handicap accessible, because we want to make everyone feel like they can come here and get something out of it,” explained Pemberton.
As someone who uses the facility, Lewis pointed out, “The staff is very sensitive to the fact that some people who come here have been cancer-free for years, and some people are just coming off of treatment.”
The research component is woven into the daily schedule offerings. The Center’s staff has developed a 12-week wellness program with a researcher at Yale, to follow a group of survivors for 12 weeks, and look at the impact of behavior modification, nutrition, psycho-social support and exercise.
“At the end of the day we can show that these interventions do improve health and wellness. Most of the treatments survivors could benefit from aren’t covered by insurance. So if you can’t afford them, very often you don’t get them. Even if they are covered, people often don’t know about them or doctors don’t prescribe them — things like physical therapy (now called ‘cancer rehab’). That is covered, but you have to know to ask for it,” Pemberton explained.
“Jeff’s long-term plan is that not only will we create programs here but also that this model can be duplicated nationwide. This is what we’ve built in just three short years,” she added.
They also hope to reach out to doctors to promote some of their education programs.
But for survivors like Lewis, one of the biggest things the Center offers is community. “One of the yoga teachers who will be teaching here, she has made a huge impact on my life and my treatment. She helped create an environment where you feel you’re in the middle of one big giant hug. This Center is going to mirror that same community of support.”
Two things stick out as being key about the Center to helping those in the community who need it most. The first is that the space is designed to be beautiful, light-filled and comforting. It’s tranquil and airy and a place that’s easy to feel wholistic and healthy.
The second, and perhaps most important element built, in is that everything the center provides is basically free to survivors. That goes a long way.
What is ‘Survivorship’?
The concept of ‘cancer survivorship’ is not without controversy, in a way. “We do struggle with that word. A lot of people identify with being a cancer survivor. There are some people who have a problem with the word too. They think, ‘If my daughter didn’t survive, what does that make her?’ The definition of ‘survivorship’ is very personal,” Pemberton said.
Hoping to be more embracing, Pemberton explained the approach of the CT Center. “You are a cancer survivor from the moment you are diagnosed. That really is the definition. So it’s that phasing—diagnosis, treatment and then on for the rest of your life. If you are not going to ultimately beat the disease, it’s in how you choose to leave the world as well, in terms of palliative care. So it really is that full spectrum. Surviving really is what every cancer patient makes of it.”
Lewis offered her perspective. “My definition of being a survivor is different now than when I was going through treatment. When I was going through treatment, it was the unknown. Now, there’s always the unknown, but I do feel more empowered by the term ‘survivor.’ Everybody feels differently. For me personally I feel an empowering feeling.”
It’s that feeling of empowerment and control over their own lives and how to be healthy and well, that Pemberton says the Center’s staff wants people to take away from their programs.
Building the Center was an amazing accomplishment for everyone involved
For Lewis, who raised more than $55,000 for the Center by participating in two CT Challenge bicycle rides, it’s an overwhelming feeling to even stand in the facility, which for so long was only a concept.
“Without a doubt, I feel pride. The first time I heard about it, this Center was something to look forward to, that I was going to have a place to go where I could feel comfortable and safe and part of a community. The people that I met through yoga classes at the Stamford Hospital wellness program (an early CT Challenge program) before cancer our lives would have never crossed. We’re all different ages, different ethnicities, different religions. Now I have such a bond with each one of them. That is the vision I have for this place. I’m grateful to have those relationships and I see that happening here. Cancer survivors can come here and better themselves physically, mentally, but also grow as an individual because of the different people they’ll encounter. This Center is a gift and I feel very fortunate that not only did I contribute to it, but also that I get to benefit from it — as will many other cancer survivors.”
Even though The Center is now a completed reality thanks entirely to donations, Pemberton stressed that the CT Challenge Center will always continue to be completely funded by donations, and that there are several of ongoing needs for financial support.
“Now that we have this amazing facility, we want to make sure we can continue to maintain it and offer these great programs,” she said, adding that the fact the Center is now a tangible location will help those efforts. “It was a very tough year for non-profits, and that we were able to get to completion was amazing. Before it was just an idea, but now it’s a place people can come and see.”
For Jeff Keith, the man whose idea sparked this amazing health and wellness resource, it’s a neverending quest, even now that his dream has become reality.
“It’s great, but it’s only great with this place filled with survivors. Seeing them come from the first day was amazing. Our goal is to have an impact on people’s lives, and measure the outcomes — the outcome is to really improve the quality of their lives. To show them that exercise and nutrition can change their lives and improve it. This is a place where you move forward.”
In fact his contagious enthusiasm always set on forward. “We’re only just beginning. Wait until we get the data and put together studies and publish them, and show that we’re actually improving people’s lives and helping save on their health care costs — that’s the end game.”