Cancer, Casting, Recovery And Camaraderie

Happy Mother’s Day to all! Our May cover story profiles a great organization, Casting for Recovery, which does wonderful work taking female breast cancer patients on fly fishing retreats all over the country. Here’s the story and we hope it provides some hope, which Casting for Recovery certainly does.

BY CHRIS COCOLES

Call it a momentary sense of normalcy, a much-needed distraction, a bonding experience, an opportunity to connect with nature. Therapy appears in various forms, shapes and sizes.

And in a setting such as wading in an Alaskan river, or boating down the Kenai on a misty fall morning, fly rod in hand, surrounded by women who are part of the same sisterhood – those who have received a breast cancer diagnosis – the simplicity of waiting for a trout to devour the fly at the end of the line during a most complicated time in life is cathartic, if only for brief moments. Catching fish isn’t the only endgame. Hardly.

Cancer sucks! Or as often-viral social media hashtags so eloquently put it: #F*ckcancer! There’s no sugarcoating that when a weekend fly fishing retreat is over, it’s not going to change a diagnosis. Casting for Recovery, the organization that offers free fly fishing retreats from coast to coast for women with breast cancer, understands that a weekend getaway can’t make it all go away, but it can provide a much-needed reprieve from the stress and worry that a cancer diagnosis brings. It can also offer perspective.

“‘The healing power of nature’ – a lot of our taglines have to do with that. And I believe that wholly,” says Jen Lofgren, Casting for Recovery senior regional program manager, who helps organize retreats in Alaska and other Western states.

“It’s just changing a thought, moving a muscle kind of thing. Get out there and allow yourself time to be in nature. I don’t know anyone who has ever said ’I feel worse’ after spending time in nature.”

What began as a modest idea in Manchester, Vermont, in 1996, has turned into a nationwide nonprofit organization that has served roughly 11,000 breast cancer survivors and thrivers to date. Indeed, Casting for Recovery has found a niche that it can be proud of.

“I know a lot of people who say, ’Oh, breast cancer; there’s a million resources for people with breast cancer.’ That’s true; there’s a lot of stuff out there. But nobody’s doing this. That’s what I hope keeps us relevant for years to come,” adds Lofgren, who also emphasizes the importance of reaching a more diverse audience. “I hope we can continue to do good work and serve people.”

The concept started small and became a big hit.

WANNA KNOW HOW FLY fishing and honoring breast cancer patients came together? A professional fly angler and a breast reconstruction surgeon, of course. Hence in 1996, the fly fisher, Gwenn Bogart (nee Perkins), and the surgeon, Dr. Benita Walton, were good friends who had an inspiration.

“The surgeon said to the fishing guide friend, ’Take me out and show me what fly fishing is about,’” Lofgren says.

“And she soon realized that the gentle casting motion would be really good for patients who had undergone radiation and reconstructive surgery.”

Gwenn was affiliated with the popular outdoor retail company Orvis, which, Lofgren says, “didn’t hurt,” as it offered up new avenues to mold more than a common bond between two women.

“That was a good launching place, to have the support of Orvis, a giant in the fly fishing world, who agreed that it sounded like a great idea. In 1996, we started with two programs in Vermont, and then fast forward 28 years later and we will host 60 retreats across the country this year,” Lofgren says. “So it’s pretty awesome.”

Indeed, by the time you read this, there will be retreats either completed, in progress or planned from Casting for Recovery’s Vermont birthplace, to the state of Montana (the current location of CfR’s national headquarters), all the way to Alaska, with a maiden Hawaii retreat scheduled June 7-9 on the island of Kauai.

That there is even more demand to add more retreats to accommodate all the women interested in signing up is both great for outreach but also the reality of an abhorred disease.

“Sadly, we don’t have any shortage of clients. We all know wives, daughters, mothers, sisters, friends who have had a breast cancer diagnosis. And so we have more women applying than we can accommodate; for every one woman we accept in our random selection process, we turn three away,” Lofgren says. “So there’s definitely more need than there is bandwidth, which is good in terms of keeping the doors open, but frankly, I think we’d all agree that we’d take a cure for the disease and find something else to do.”

THIS YEAR’S KENAI PENINSULA retreat will take place September 6-8 at River Raven Sanctuary Lodge in Soldotna along the Kenai River. Lofgren has been involved with several Last Frontier events. As you might expect, the logistics for an Alaskan retreat can be quite challenging.

“It takes a hearty soul to live in Alaska for many reasons – remote location, harsh climate, extended periods of darkness and lightness, expensive housing, high cost of goods, and limited access to resources such as health care,” she says. “Many women diagnosed with breast cancer, especially those living in remote areas, have to travel quite a distance for their chemotherapy and radiation, sometimes all the way to Seattle. Travel is not inexpensive; figuring out housing is not easy or cheap if they need to find a place to stay for daily or weekly chemotherapy or radiation treatments (often for 6 weeks or more). Taking time off of work, arranging for childcare – these are all added stressors on top of receiving a cancer diagnosis.”

For these cancer patients who live in Alaska, the Casting for Recovery program provides desperately needed comfort, camaraderie and common ground.

“For many of these women, coming to a retreat is the first opportunity they have to discuss their diagnosis and treatment in any kind of a supportive setting, and it’s made all the more powerful because they are able to share with other women who are walking a similar path,” Lofgren adds. “Additionally, all of our retreats have medical and psychosocial facilitators who have experience working with breast cancer patients, so they are able to get informed information that they may not get from their local practitioner. These Alaskan retreats are so important. The women need the support.”

And now there are plans to host a special Alaskan Native-supported retreat in 2024-25. As Lofgren points out, many in the state’s Native communities lack medical and mental/behavioral health resources, and health care/insurance opportunities are frequently lacking.

At best, many women in Alaska’s tribal communities are underinsured, so you can imagine how such a hardship is magnified by a cancer diagnosis.

“This is part of a larger effort at Casting for Recovery to reach underserved populations of women who have experienced breast cancer and are disproportionately affected by the disease,” says Susan Gaetz, the organization’s executive director.

“The success of the Alaska Native Women’s retreat is dependent on it being led by Alaska Native women with support from Casting for Recovery. We recently identified our retreat leader and are securing our venue. We have also been working with the native population for outreach efforts and volunteer recruitment,” Gaetz states.

WHAT KEEPS CASTING FOR Recovery churning along are its volunteers, generous individuals who give their time and talents to run these retreats. Each program is run by a team of volunteers, from program and participant coordinators, wellness professionals, hospitality, fishing guides and photographers. Each program is fully self-supporting and does all of its own fundraising throughout the year in order to host these retreats. CfR has over 1,800 volunteers nationwide! Lofgren was one.

A longtime angler, she was managing an Orvis store in Denver in 2012 when she heard about Casting For Recovery and wanted to help. As it turns out, someone representing the organization walked into the store in search of donation options.

“I said, ‘I’d really like to get involved,’ and she said, ’Well, we need guides for this weekend.’ And that’s how it all started, and I just fell in love with it. I thought it was the most amazing thing,” says Lofgren, who after years of volunteer work took a full-time position with the nonprofit in 2018. “And now what I get to do is work with all of the programs in the Western states, and as I jokingly like to say, the West is best! Seriously, though, I feel so incredibly fortunate to be able to do what I do.”

Lofgren says her Alaska trips to the Kenai Peninsula have been among the most memorable of the Western states’ retreats.

“People go through a lot and it’s really eye-opening to see how strong people are, and not just the person diagnosed with cancer, but their families and support systems as well. It’s really impactful.”

Lindsay Agness is another Casting for Recovery volunteer. Based near Rochester, New York, she and husband Dave have collaborated to write fishing books, and the couple regularly casts for salmon, trout and Arctic char in Alaska (Alaska Sporting Journal, June 2023).

Agness, who also volunteers in Trout Unlimited’s Women’s Initiative program and participates in fishing-related programs for veterans and kids, has been involved with Casting for Recovery’s upstate New York chapter retreats since 2015 as a fly fishing instructor.

“Casting for Recovery has been such a wonderful organization and it has impacted me tremendously. I get more out of the retreat weekend than you can imagine,” she says. “These 14 women who attend the retreat have lots of health issues and trauma. They show me how to move past a traumatic cancer experience and live every day to the fullest. The women I meet are an inspiration to me and make my problems seem small and minute compared to what they face every day. It’s been an honor to guide these women over the years.”

Agness can attest to the power that these retreats can have for those stricken with cancer.

“Many times, women are diagnosed with breast cancer, and they don’t have a chance to go through their emotional journey. They have surgery and follow-up treatments. However, they are left with their grief and feelings that need to be addressed,” she says. “This program and retreat allows them to meet with other women going through a similar journey. The emotional benefits of being with others in a similar situation while connecting to nature is very healing. There is a lot of laughter, crying, hugging and support at the retreat. At the end of the weekend, the women have bonded for life.”

Lofgren cherishes the friendships she’s developed over time with both retreat participants and volunteers. One particular relationship she’s grateful for was with Margaret Bell, who attended a retreat that Lofgren helped coordinate in Colorado.

Margaret eventually became a volunteer herself.

It’s that kind of pay-it-forward approach that has made this organization grow exponentially. Connections made over the weekend can become lifelong friendships.

Margaret wrote a recap of her retreat experience and one of the things she said was, “We show up for the weekend and we all have this common language – chemo, radiation, infusion – and as the weekend progresses we’ve got this new vernacular, like thingamabobber and tippet, all these new words that are being incorporated into the weekend, an example of how these retreats allow women to think about something other than cancer, if only temporarily.”

Margaret passed away on October 10, 2022, but her spirit will remain with her friend forever.
“I can say with absolute certainty that her quality of life greatly improved after she attended a retreat. She completely fell in love with the sport of fly fishing, and volunteering for this organization became her passion. She recognized immediately that being in nature, fly fishing with new friends, was the one place that she did not think about how sick she was. As a result, she wanted to go as often as she could. Two weeks before she passed away, she was fishing in Montana. It meant everything to her,” Lofgren says.

Fear of recurrence goes along with this disease that has affected so many people. #F@uckcancer, indeed. (Casting For Recovery also hosts metastatic retreats for women suffering from stage four cancer in Colorado, Georgia, Indiana and Texas; Nebraska just hosted its first stage 4 retreat last month and Idaho will host its first in September.)

“We offer medical and emotional wellness sessions, where participants are given the opportunity to speak openly about their disease, and ask questions in a safe space. They can even do so anonymously by putting a question into a basket about something they might not feel comfortable saying out loud or discussing with their oncologist. A lot of times people have a hard time talking to their own family because they don’t want to scare them,” Lofgren says. “They just have to navigate some things, and being able to do that with other women who are in a similar situation allows them the freedom to do that.”

During free time, many of the women gather with one another, and even with staff, to continue the conversations.

AS FOR THE FISHING, many of the applicants have little, if any, angling background. Fly fishing experience is almost nonexistent, but it is also not a requirement.

“The lion’s share of those attending our retreats have never picked up a fly rod before. And many of them have never tried traditional or conventional fishing either, or if they have, it was when they were a child. So we really spend a good part of the weekend teaching them,” Lofgren says. “They usually show up on a Friday afternoon and we get them outfitted in their gear right away, and that’s kind of a good icebreaker – trying on waders and posing for a grip and grin with a giant stuffed trout.”

“On Saturday morning, we do a basic introduction to the sport – equipment overview, knots and rigging, how to put a rod and reel together, explain the gear, accessories, rod weights, lines, tippet, accessories, etc.,” she continues. “And in the afternoon, we teach basic casting, wading safety, how to fight a fish and proper catch-and-release techniques. Some programs offer fly tying, so women get an opportunity to try that out, and maybe even catch a fish on a fly they tied!”

“And then Sunday comes – the most exciting day of the retreat, in my opinion. Each woman is paired with her own guide and the two of them spend four to five hours fishing. The laughter, smiles and hooping and hollering that can be heard echoing across the water is the most beautiful sound you’ll ever hear.”

By the end of the weekend, Lofgren is often amazed and heartened by a newfound love for fishing and the outdoors. The day ends with lunch and a graduation ceremony, and then everyone says their goodbyes.

Lofgren is pleased to note that the comment she hears most often from participants after the retreat is “I wish it had been longer. I didn’t want to leave; it should be a week long.”

“That tells me we’re doing something right,” she says.

WHEN THE PIONEERS OF Casting for Recovery, Dr. Benita Walton and Gwenn Bogart, teamed up on the idea for the program, they soon discovered that at its core, the fly fishing premise was on its own a healing placebo for breast cancer patients. That is in the casting motion of a fly rod and how it impacts and improves mobility.

“That’s something that (Dr. Walton) noted right out of the gate, and that’s sort of the idea that was born about why fly fishing and breast cancer (are connected),” Lofgren explains. “A lot of people wondered just that. ’What does fly fishing have to do with breast cancer?’ And even if it didn’t have to do with mobility or movement, I think it would be just being outside and the soothing sounds of the water. And casting; I just love to cast. I find it really relaxing, just the rhythmic cadence of it And I do think it’s a great motion for mobility, even for myself.”

Lofgren notices that rookies often will grasp a fly rod really firmly, as if they’re handling a rattlesnake, and they quickly tire, but as soon as they start to relax and get the hang of the timing and the casting motion, things start to come together for them.

Lofgren has also found that women teaching other women to fly fish makes it an even smoother transition.

She says that generally speaking, women are great casters because “A) They listen pretty well, and B) They don’t try to hammer the cast. It’s so much more of a finesse thing than a power thing – a gentle, even motion. And it’s a lot easier in my experience to teach a woman how to cast than it is a man, which I realize is a broad generalization, but many men think it’s a power stroke. But by and large, it’s a finesse thing.”

Besides the therapy and positive vibes the retreats offer, Lofgren believes it’s important that the organization is always evolving and cognizant of factors like climate change and its effect on outdoor recreation. She cited the uptick in devastating wildfires, drought and floods in the West, not to mention the deadly blaze that struck the Hawaiian island of Maui in August 2023.

The retreats are also an opportunity to provide the women with a conduit between fishing and conservation. Casting for Recovery has made it a point to preach the catch-and-release ethic at its retreats.

“Conservation is so important when introducing women to the sport of flyfishing,andwewanttodosoina responsible and sustainable fashion. There is a big movement right now to ‘Keep Fish Wet,’” she says, “and we recognize the importance of doing so, but with brand-new anglers, they’re so excited that they often manhandle the fish. We understand we need to show them the right way to do it. Explain why it’s important to handle fish more carefully and to keep them in the water as much as possible. We also try to impart the importance of maintaining our natural resources so that they are there for generations to come. That, and being good stewards of the land that we’re using is important. We all have a responsibility.”

THREE WOMEN NAMED MICHELLE, Melissa and Carol discussed their experiences with Casting for Recovery programs as retreat participants.

Michelle: “I had just had a double mastectomy and I wasn’t sure I would be able to participate in activities like this. I surprised myself and I am so grateful to have been able to participate in this retreat. It was a life-changing experience for me.”

Melissa: “After I was diagnosed with cancer, I lost my connection with nature. I forgot about the revitalizing effects it has. Being able to take deep, clean breaths, enjoy the brisk morning air and feel the sun on my face as the day warmed was so healing and uplifting. Casting for Recovery reminded me how much I need nature to survive.”

Carol: “I had never been fly fishing. I’m a pretty outdoorsy person, but this was a new experience and I enjoyed the beauty of the river, the company, and I was surprised to catch so many fish and release them back. It was overwhelming at times to be in the company of all of these amazing women with breast cancer. The fishing made that possible.”

Lofgren often reminisces about her friendship with Margaret Bell, the Colorado retreat participant who started volunteering with Casting for Recovery after she attended a retreat. “Margaret’s cancer journey is over,” Lofgren says, “but she will be remembered as a positive and joyful force, and everyone whose lives she touched is better for having known her.” ASJ

Editor’s note: Learn more about volunteering or donating to Casting for Recovery at its website, castingforrecovery.org.

MEMORIES OF MOM’S CANCER FIGHT

I’ve been working on and off on this month’s feature story profiling the breast cancer patient fly fishing organization Casting for Recovery, and all I keep thinking about is making sure I get it right. Or at least hit all the right notes. I’ve certainly stressed about it enough leading up to our May issue.

Like so many of us, breast cancer has affected my family. My mom was diagnosed in the early 2000s, went into remission, but it returned, and after a short battle she passed away from the disease in September 2007.

I had a dear friend I worked with in Los Angeles whose mom was also diagnosed with the same disease shortly after my mother (her mom died a couple years after mine). It was important for me to walk in multiple fundraisers to support breast cancer patients, and now years later I felt honored to have an extended chat with Casting for Recovery’s regional program manager Jen Lofgren – she coordinates fly fishing retreats in Alaska and other Western states – and corresponding with executive director Susan Gaetz and others for the story.

It was a hard story for me to write; lots of memories of my mom, my friend who lost touch with me, the stories Lofgren told me about interacting with these remarkable women. They were going through pure hell but found some peace with a fly rod on a quiet river in Alaska or other waters throughout the country. I wanted to know how they held it together while in the fight of their lives.

Lofgren told me about how the same women who came in without any background in fishing were the same ones who wanted to kiss the trout they’d just caught. Just being there makes them badass in my book.

“I say this at every retreat: I often question whether or not I would have the courage to do it. It’s 14 women who are randomly selected. It’s not like they can pick who their roommate is going to be, or ask their pals to come along for support. They don’t know a soul. They’re likely going to have to share a room and a bathroom,” Lofgren said. “They’re already in this vulnerable place, dealing with all kinds of sh*t. I can’t tell you how many times I have heard a woman say, ‘I started driving down the road to the venue, and then I turned around, but then I came back, and I am so glad I did.’ I get it. I think it takes tremendous courage to step into the unknown.”

My mom probably wouldn’t have done it. She was a sweet, kind person, and she had her comfort zone and this wasn’t it. But I know she would love that I wrote a story about breast cancer patients who are willing to take a pause from their battle by learning to fly fish with like-minded ladies who epitomize toughness, strength and resilience.

I only hope I did right by everyone who is involved in this great organization, because it’s an important subject to share. –CC