Changing Lives: This is one of an occasional series about the human issues challenging our town and the people who are transforming lives, changing directions, inspiring kindness and creating solutions.
It’s a sisterhood with a deep, soul-connecting bond that fills a gaping need for support, empowerment and collective strength.
“It’s a sisterhood you don’t want to belong to,” said Laura Stornelli, with a wry laugh.
Stornelli and friend Manon Labrecque are co-founders and co-CEOs of Dragonfly Wellness, a not-for-profit organization that offers unique wellness retreats to women affected by breast and gynecological cancers on their journey to wellness.
The profound bond between the two Newmarket residents — who had lived across the street from each other for 14 years — was created when they were diagnosed with breast cancer within eight months of each other.
At the age of 48, seven years ago, Stornelli found a lump in her breast when she was putting on sunscreen.
“My first thought was ‘here we go’,” she said, acknowledging a family history of breast cancer. Her mother, mother’s aunt and first cousin had been diagnosed.
Labrecque, then an oncology researcher, recalls visiting Stornelli, who had moved from the neighbourhood at the time of her diagnosis, following her third chemotherapy treatment.
“I thought, working in the field, I could be of support somehow,” she said. “I reached out as soon as I heard.”
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Labrecque had spent 20 years of her career conducting psycho-social oncology research and seven years solely working with women affected by breast cancer to better their quality of life with resources and services.
Mere months later, in May 2013, Labrecque was diagnosed at the age of 44.
Unlike Stornelli, she didn’t find a lump: “I had to bend over and lift my breast to see a little indentation. I knew at that time that it wasn’t right because I had heard so many stories of how women had found their breast cancer.”
Cancer doesn’t run in her family and she was shocked by the diagnosis.
“I was floored, really, because I was young, and I had breastfed for six years straight between my three boys and I was told if you breastfeed, if you exercise, if you were slim, if you didn’t drink, if you did all the right things, your risk was low. In my work, I even took a survey to see about my risk and my risk was zero. So much for that.”
Finding that indentation saved her life. She had a double mastectomy and opted for the most aggressive treatments available.
There was no way, not even an extensive career in oncology research, to prepare for what was ahead.
“I thought I had such a good understanding of what someone was going through when diagnosed with cancer because I had listened to so many stories,” Labrecque said. “But when I walked the walk, I had to pinch myself and say, ‘Hey, that’s what this woman was talking to me about.’ It was just coming back in flashes, I could put faces to those women. And I thought, now I’m getting it.”
Stornelli reached out, as Labrecque had for her.
“And she never sugar-coated anything,” Labrecque said. “She said it’s going to be a shit show and you’re going to be able to get through it — we’re going to get through this and I’m going to be here for you. She was way more there for me than I was for her.”
They had each received their certificate — “You get a paper certificate, believe it or not” — signifying the successful completion of their treatment, and began sharing information — “I was into cooking, boosting your immune system, and she was into exercise and vitamins,” Labrecque said. But it soon became apparent that was not enough.
While the treatment had ended, a journey was just beginning.
“It’s ring the bell, you’re done, well done, you survived, go back and live your life,” Stornelli said.
“When I asked them what the next step was, they told me to pick up where I had left off. How can you do that?” Labrecque said.
She makes it clear that having had cancer doesn’t define who she is — and she makes a point of never introducing herself as a cancer survivor — but the reality is that it impacts your life indelibly.
“It shapes your future because you’re dealing with fear, you’re dealing with questions. If the questions aren’t there right after treatment, they come along as you move on,” Labrecque said.
“You realign your life and your goals. I never went back to conduct research, I couldn’t do it.”
“It’s funny, Manon and I are such polar opposites on a lot of things. Manon couldn’t go back to what she did, I totally wanted what I had,” Stornelli said.
But they both felt “lost” when they looked to the future after treatment ended.
“It was mind-blowing to go through the journey and to be as lost as we were when we ended treatment. I understand that the health care system is there to save your life, right? They feel like their job has been done, (but) it was a beginning for us.”
Stornelli received all her treatment at Southlake Regional Health Centre, while Labrecque received treatment at Princess Margaret Hospital, and radiation at Southlake.
“They are good at what they do, but there’s a piece missing: survivorship. More and more people are going to be diagnosed with cancer, and are living with cancer, and we need to address what life is all about,” Labrecque said.
While some support services are available, there wasn’t any integration among providers or a single comprehensive resource.
Labrecque was determined to do something about the gap in the system but it wasn’t until her massage therapist mentioned a retreat for women affected by breast cancer that she knew what it would be.
“I’m like, get out of here, this is what we’re going to do!” Labrecque said.
Stornelli admitted she was hesitant initially when Labrecque — the more outgoing of the two — enthusiastically approached her about her idea.
Undaunted, Labrecque wrote a letter to send to her network, sharing her story and requesting donations to support a breast cancer retreat.
She shared her vision: The idea of the retreat is to offer women affected with breast cancer an opportunity to renew their energy and connect with others who have a deep understanding of their situation. The retreat will offer a place where women can discuss and endeavour upon various approaches believed to calm the mind and reduce stress. It will feature a unique mixture of healing methods, uplifting discussions, creative arts and outdoor adventures that will help participants with their healing journey. The ultimate goal is for women to be able to take home what they have learned and continue to utilize these tools and techniques in their everyday lives."
She raised $3,000 — to Stornelli’s amazement — and they got to work on the first weekend retreat at Loretto Maryholme in Roches Point on Lake Simcoe in June 2015.
They tapped into their contacts, found a facilitator, cook and session leaders.
Stornelli, a longtime fitness trainer who now specializes in fitness for women who have had breast cancer, offered yoga for breast cancer and range-of-motion pilates sessions.
Fourteen survivors, including themselves, attended — “That’s the right number, it’s intimate enough so people can get to know each other and share their stories,” Stornelli said.
“We’ve had women who were givers all their life and no one has ever taken care of them,” Labrecque said, “so they come to a weekend like this and we pamper them — we pamper them emotionally, we’re not doing manicures and pedicures — in a way that we’re giving them permission to express their feelings, their fears, no judgment, we respect them.”
Women, typically nurturers who put themselves last, learn essential coping skills.
“We need to empower women and really stress the importance that they have to come first, because the emotional and psychological impact of cancer is so huge in so many different ways that women can’t be expected to pick up where they left off or even move forward without having a support system and resources in place. And that’s why we created Dragonfly.”
The reaction to the first retreat was immediate and overwhelming, and they haven’t looked back.
Their 16th retreat will be in November 2019, and there is already a waitlist for next year’s retreat in April.
While their initial mandate was to help women with breast cancer, last June, they began including women who have had gynecological cancer because of the many common issues, particularly those related to relationships and sexuality.
They also have held a weekend retreat specifically for young women aged under 40 because they typically are dealing with some different issues.
The self-care session is among the most popular at each retreat, helping women to be there for themselves, before family and friends — something Labrecque readily admitted to being her challenge, as the mother of three young sons, 13, 11 and 8, when she was diagnosed.
Stornelli faced different challenges, as the mother of two teenage sons, now 23 and 26.
“It’s harder when your kids are teenagers because every time you have a cough or a headache, they think your cancer is coming back,” Stornelli said. “The memory stays (with them).”
The retreat becomes a turning point in the lives of these women who have survived cancer and were at “rock bottom,” Labrecque said.
“We have had women in their 70s, 10 years past diagnosis, when they walked in there, they sat down on their bed and sobbed, because they thought, ‘Finally, a place where I can be me, I don’t need to hold up the good face and I can talk about my diagnosis’.”
“I feel normal here, we hear that a lot,” Stornelli added.
For Jamie Lee Mezzapelli, a Newmarket resident, owner of Better Than Ever and supporter of Dragonfly Wellness, the lasting impact of the weekend retreat has been the sisterhood it created among other local women who "have walked the walk".
"We're still friends," she said. "We support each other to this day."
She said because she was fortunate to receive her treatment at Toronto hospitals, she did receive the support needed to help her "evolve" as a breast cancer survivor.
"I didn't feel the void the majority of women in York Region and other parts of Ontario feel because of the lack of a support structure."
And while she did discover new things about herself that weekend — including the unexpected release and joy she found in drumming — it was the connections to a circle of friends that changed life for her.
The group uses its Facebook page to obtain instant feedback to the questions that continue to arise, or anything they "are struggling with", Mezzapelli added.
"Before, you felt you lived alone, and now we have this huge support system."
As word continues to spread about Dragonfly Wellness and its life-changing impact, its resounding success has created a dilemma for its founders.
“Our waiting list is growing and we feel overwhelmed, how can we help all these women?” Labrecque asks.
“Literally, we get phone calls at home: ‘I’m signed up for a retreat, I can’t hang on until November, I need support now,’” Stornelli said. “Manon is having strangers in her kitchen for tea on a weekly basis.”
So, they created a monthly support group to help fill the gap in information and support in between the retreats.
Their greatest challenge has been fundraising, as it costs $10,000 to $12,000 to run each of the four annual retreats. They want to ensure the retreat is accessible financially, so participants pay $175 each (about half the actual cost), and session providers continue to donate their services.
They hold three annual fundraising events — a tea party for Mother’s Day, yoga at Madsen’s Greenhouse led by Stornelli, and Pink my Drink — and are planning their first gala for Feb. 29, 2020.
They keep expenses low — $2 to $3 dollars per person — and rely on donations from supporters and sponsors, including Snapd, Nature's Emporium, Project BeamOn, Gathering Floral Studio and the Georgina Dragonboat Club.
For the tea party, for instance, a post on Facebook resulted in a collection of 150 teacups and the 100 tickets sold out in three days.
They dream of receiving a large donation that would allow them to focus on offering more retreats, and provide a permanent location for support groups and services such as lymphatic massage.
“Basically, it’s about money and this is why hospitals are lacking survivorship services — that’s what gets cut,” Labrecque said.
To date, they have raised more than $150,000 and a $10,100 donation in July from 100 Women Who Care - Central York Region came at just the right time.
“The universe brings the people to you when they’re meant to — I learned this over the last little while,” Stornelli said. “I was never much into the ‘woo-woo’ before, but now, I think there’s something to it. Like when we’re down to our last few nickels and then 100 Women comes through … and we can breathe again.”
So the sisterhood will continue to grow.
For more information, call 905-506-5440, email [email protected] or visit trustyourwings.ca.
