Mending on the Fly

MOTF_CFR_2_mixdown
===

[00:00:00]

Devin: I would like to introduce our first podcast guest, Susan Gates, who's the executive director of Casting for Recovery, an organization that brings women suffering with breast cancer of all stages.

Out on the river and exposes them to fly fishing and the benefits that can be obtained out there. So without anything further, Susan, why don't you just go ahead and tell us a little bit about yourself and we'll go from there.

Susan: Sure. Thanks. It's great to be here and I'm honored to be your first guest.

Devin: Yeah, thank you.

Susan: I'm the Executive Director of Casting for Recovery, and I'm in my first year as the Executive Director, but I started as a volunteer back 24 years ago and I am in love with this mission, maybe even more so now than I was when I first learned about it so many years ago, and The organization has grown dramatically since I volunteered back then [00:01:00] and continues to grow.

And I, I hope to be a catalyst for even more positive change and growth so we can continue to serve women all over the country, better, more of them and in new healing ways. So thank you for having me.

Devin: Yeah, no. And thank you again for being here. Really appreciate it. Why don't we go back a little bit?

You said you started off as a volunteer, but I know after talking to you previously that, that you actually started off as a photographer. So maybe you just give us a little bit of background and how you actually found your way to the

river.

Susan: Yeah, absolutely. I think like a lot of people of a certain age we found that maybe what we thought we were going to start our career in has morphed into something else.

And then you end up landing where your passion truly lies. So, in an earlier career, I was a photojournalist and medical stories were really my passion. And I. Had a boss who had introduced me to fly fishing taken [00:02:00] some casting lessons and she'd had a sister who had passed away from breast cancer and she ended up telling me about casting for recovery and I love this concept and so I pitched a photo story to the American Medical Association and they flew me to Vermont where casting for recovery was headquartered at the time.

And had me photograph a retreat up there for a story in their monthly publication that went out to all of the physicians around the country. And something happened to me at that retreat. I just saw profound changes in women. I've written a little bit about this before when people asked me, what was it about Casting for Recovery that, that really captured you in the beginning?

And What I saw in that retreat was so many different women on the spectrum of economics different stages of breast cancer, different life stages. So for example, I saw a woman probably in her 80s [00:03:00] that caught a fish on a fly rod and pretty much lost her mind. It was so exciting. I don't know that she'd ever done much fishing except for when she was a kid.

So to see someone that age feeling like a kid again was pretty amazing. And then there was a really young woman at that retreat, probably in her 30s, who because of her breast cancer treatment found herself in menopause at a young age. She was single, no kids and in menopause and really her peer group, she didn't have much in common with her peer group.

They couldn't understand what she was going through at such a young age. There was a lot of anger. And she just really felt misunderstood around most of the people in her life. And I think that a lot of folks probably didn't know how to support her with that anger. And she came into the retreat and pretty quickly found that she was surrounded by women that.

Really supported her and really could feel for [00:04:00] her because she was, she felt like she was missing out on the same opportunities that other women had in their thirties, whether it's comfortably dating or wanting to have children, wanting to be in a relationship, certainly not wanting to be in menopause in your early thirties, and so by the end of that retreat, I'm not going to say her anger was gone.

But it was severely diminished. It was quantifiably diminished. She left knowing that others understood what she was feeling and understood her anger rightfully that she had been robbed of all of that, how she perceived it, that she had been robbed of all of that and then the other thing I saw at that retreat is I saw two women One very wealthy and another very much so not wealthy.

And those two women from very different economic backgrounds became the tightest of friends on this retreat. I want to say that a lot of it had to do with their cancer journeys, [00:05:00] their sense of humor, something about the two of them. They were thick as thieves once they became friends. Yeah. And One of them rode off on her motorcycle and the other one rode off on whatever luxury vehicle she came to the retreat in.

Right. But I love that breast cancer and fly fishing is what brought these women together, these unlikely friendships, this, these unlikely relationships of support. And I came back from that retreat on fire about the program and immediately started volunteering. That's the first time I got involved in.

Devin: That was

your first.

Retreat.

Susan: That was my first retreat. And I continued to volunteer after that. I started the Texas program of casting for recovery in 2005. And just recently handed the reins of that over to two volunteers here. Cause I can't be the executive director and run the local program and do all of that.

So, , yeah, I switched gears from photography. [00:06:00] And went to work for casting for recovery and never looked back.

Devin: That's

awesome. Will you tell us a little bit about how casting for recovery started? I know it was a thing before you made your first retreat as a photographer and started volunteering, but can you tell us how it came to be?

Susan: Yeah, absolutely. Casting for Recovery was a passion project that began with two friends fly fishing. One, a breast reconstruction surgeon, and the other a fly fisher. So, these two women, Benita Walton and Gwen Perkins Bogart two friends fishing. And through through conversations about Not only how you feel when you're fly fishing because you just feel differently out on the water.

You just. Breathe a little deeper, sigh a little more, relax into it, and you're just immersed in nature, the sounds, the smells the feelings of wading in the water, and the surgeon was talking about the casting motion of fly fishing, and how that could be really good for women who have gone through [00:07:00] surgery, like a mastectomy or radiation.

These things create scar tissue. and create issues around range of motion. For folks that might not understand what that actually looks like for women who've been through surgery or radiation for breast cancer, they might have trouble opening an overhead cabinet or opening a sliding glass door.

They might not be able to reach as high up or had the same motion with their arm shoulder because of that scar tissue. Well, we all know that stretching those areas repeatedly Is good for that range of motion. And so the casting motion of fly fishing is good for that range of motion. It's soft tissue stretching.

And casting a fly rod is a, can be a gentle motion, of course, unless you're saltwater fishing and then really getting after it 80 feet. But in most cases, it's a gentle motion. And so this concept was born of taking women out of the clinical setting. Into nature with each other, where they could learn a new sport, something new and [00:08:00] exciting, possibly on people's bucket list in a very safe and supportive environment.

And at the same time, being able to be around other women who have a shared breast cancer experience. And then we also brought in oncology. Medical professionals and psychosocial professionals and the program was born. And this was back in 1996 in Vermont, we held two retreats that year in two States.

And wow, fast forward now to our 28th year. And we're hosting 60 retreats all across the country, Alaska, Hawaii included.

Devin: It's incredible.

Susan: And we've served almost 12, 000 women in these. Small intimate retreats that are really designed to have a powerful impact on some portion of their life, whether it's the support part, learning a new sport that is therapeutic that they can continue with, or getting the oncology support that they need new resources, new ideas to improve their well being.[00:09:00]

It's really powerful. And our model continues to really resonate with women which says a lot about This whole concept that those two women started with so long ago

Devin: and

when they started it, I mean, you mentioned the physical benefits and nowadays, fast forward to 2024 there's and we'll get into it later, but I know there's psychosocial therapy probably a much greater focus now on mental health than there was, , was it principally, Thought of as a, as physical rehab or where they also focused on the mental health aspects in 96.

Susan: I think that in the beginning they, they were like, this sounds really cool. Let's try it out. So I think probably for the first couple of years, they were bringing folks together and seeing. What is this like? And I don't even know what the evaluations were like back in 1996. It might have been like a letter from folks or just something basic a 1 pager about your experience.

Right? I [00:10:00] think that their premise probably was. Similar to what it is now, some everybody's going to take a little something different from this. Maybe it's their new best friend. Maybe they're going to learn something new about the physical or emotional effects of breast cancer. I think what's really true from back then to now is that what casting for recovery does is it allows women to understand that whatever they're thinking or feeling they're not alone.

So close to 70 percent of the women who attend CFR retreats, and that statistic has been the same for many years have said that they've never attended a support group for breast cancer.

Devin: Wow. 70%?

Susan: And so this tells us a couple things. One that The women that come to CFR retreats may not be drawn to traditional support resources.

It also tells us they may not have talked to a lot of other people about their breast cancer journey. And when you haven't spoken with other people, you don't [00:11:00] know if what you're thinking or feeling is quote, normal or common. And so I see it all the time at retreats where Women will afterwards say, wow, everybody in the room said they felt the same way I did or that they'd had that same thought.

I'm not the only person that thought this or was worried about this. It is so nice to hear from other folks and know that I'm not alone in these thoughts.

Devin: Yeah I mean, and there's something. There's got to be something special about hearing your story come out of someone else's mouth. And knowing that they've gone through the same thing.

Susan: Yeah. And just hearing

someone else talk about that will drive you to go up to them afterwards and say, I feel exactly that same way. When this happened, I thought. I'm a weirdo I'm the only 1 that thinks this way. I must be the only 1 and then to hear everybody not see everybody nodding in the room and hear you say that [00:12:00] it's just going to immediately that kind of peer support is just going to elevate immediately because.

You understand that you found your people that understand what you're going through, which is, could be very different from your friends or your family, the young woman at the first retreat. I went to that was angry. People are like, yeah I got thrown into menopause in my 30s. Also, even though, that woman might say, yeah, I'm in my 60s now, but I'm a 25 year survivor and I had the same thing happen.

And, to be, excuse my French, but it sucked and yeah, your friends and family don't really understand because they're not in your head. They don't know what you're going through.

Devin: Right. Right. There's the shared hardship has to build, some incredible bonds. I mean, it's the same thing with veterans or, any sort of post traumatic stress.

Type recovery. I imagine there's a ton of value and healing power in, in shared hardship and in opening up [00:13:00] about it.

Susan: Absolutely. So it's great that you guys, nobody can understand. I can't understand veterans and PTSD, right? But when you find the person that really does understand it, um, it just feels wonderful to people to know they're understood.

Devin: Yes.

So, you were a photographer. You went down for that one weekend and then you started volunteering regularly. Take me on the journey then, how did you go from volunteering to becoming a permanent member and starting the Texas chapter?

Susan: So in the beginning, I just volunteered to photograph retreats, especially on the fishing days. And then a woman named Susan Balch, who was with the national office at the time in Vermont. I had moved from Oregon back to Texas, and she said, we don't have a program in Texas.

It's a big state. Would you ever consider as a volunteer starting a program there? And all of our coordinators around the country that run the local programs are all volunteers. And so I [00:14:00] said, sure, I'll look into that. And she put me in touch with another woman who was interested. In starting a program in Texas and we got together and the rest is kind of history.

I was a very new fly Fisher at the time, but I got introduced to a bunch of really awesome folks with the Austin fly fishers and trout unlimited the folks here locally. And found a venue and we kicked it off. We made it happen.

Devin: Yeah. What was your fly fishing experience up to that point?

Well, other than like getting tangled

in trees and,

Susan: exactly.

At the time my boss was interested in. learning to fly fish. And she asked some of the staff if we would go take a casting lesson with her and a woman named Ray Carrington here in Texas. And we went down for anybody who's familiar with Austin, we went down under the Mopac bridge and we were casting into Town Lake.[00:15:00]

Now called Lady Bird Lake from the shore there. And we just had a basic casting lesson there. Of course I wasn't going to tell my boss. No. So I was like, sure, I'll go do that. Right. And that's how I started. I really liked it. My boss really liked it. So we started fishing together. She and I were lifelong friends.

And For a period of time, I lived in Durango, Colorado and me and my partner at the time went out on the animus, which at the time I found to be a very difficult river to fish because I had never really taken more than a beginning casting lesson and was definitely found myself tangled up quite a bit, but that's part of the journey of fly fishing.

It made becoming more proficient and catching fish even more wonderful. So it started randomly and it's just, it's been a part of my life ever since.

Devin: , so then did you just all up and quit being a [00:16:00] photographer at that point? Or did you continue freelancing? Or were you then fully dedicated To casting for recovery.

Susan: Yeah, I was freelancing at the time. And my volunteer casting for recovery commitments or passion had really started to become a whole other almost part time job, my time commitment I was putting into that.

So honestly, I. I pestered them for a number of years. They had two and a half people working in Vermont and I continued to pester them about hiring someone out in the field outside of Vermont to support new programs that were starting. And eventually I guess I wore them down. So they hired me.

I was the first person hired outside of Vermont. I live in Austin, Texas and uh, yeah. And then they hired a few more and eventually over time with the when we [00:17:00] received a new executive director, she moved the national office to Bozeman, Montana. I was a regional program manager at the time, and then I became the national program director and then became the executive director.

I guess if you wear enough hats long enough, yeah, you just keep, you feel like you might know a little something or can help support others coming up in that role.

Devin: And had you, it's been great. You had like nonprofit management experience before, like expanding an organization like that. How'd that work?

Was it all on the job?

Susan: I would say that at this point, this is when the board, if any of the board of trustees are listening, you might want to go get a cup of coffee. I hadn't had no nonprofit management experience except for my, 12 years working for the organization and I think with nonprofits, if you find yourself in a director position, which I was as the national program director, you really have your hands in a little bit of [00:18:00] everything from the accounting and the budgeting and the fundraising and the contacts and the partnerships and all of the weird things that come along with running a nonprofit.

When I came on there's been a big learning curve. I told myself that I was probably going to need to work nights and weekends for one year, and then maybe I would feel like I was fairly proficient in everything. And we will be coming up on a year in April. And I think I was completely correct.

That it would take a year of nights and weekends to make that happen.

Devin: Well, here you are recording on a Saturday.

Susan: Yeah, and and tomorrow I'm training some new trustees and mentoring a new medical oncologist who's coming on to a local team. But I think the true benefit of having come up through the ranks of casting for recovery is that it makes it really easy for me to train someone new coming on.

Cause I can say, Hey, join me on this [00:19:00] call. I'm going to train this new oncologist as to what we're doing. And then I will give you all my notes and I will sit on the next one and listen to you do it and interject as needed. And then you'll be off and running that whole kind of See one, do one.

Train one or however that term works. And then you're off and running. I did not have nonprofit experience, but I do feel like I'm surrounded by a lot of really great people. Our board of trustees and former executive directors who. Are all very supportive and want to see me succeed.

So I feel very supported.

Devin: And I mean, would you have any for anyone out there that might be listening that's involved in nonprofits or interested in getting involved? Obviously there are avenues to get involved in casting for recovery. So stay tuned. Don't give them the answers yet. We'll do that at the end, but do you have any advice?

I mean, clearly just. Having passion for something [00:20:00] can, it sounds like it, and in my experience, it can take you 80, 90 percent of the way there. If you're, willing to do something that you're passionate about and pursue it, it's like you can learn a lot of the stuff on the fly, but do you have any advice for anyone out there that's interested in getting involved in nonprofits?

Susan: Well, I think that because. Nonprofits are underfunded, often understaffed. You have to be so passionate about whatever the cause is. Or otherwise you're not going to put in the necessary time to be successful and move the needle in terms of where that nonprofit needs to go. And of course, there are tons of courses you can go take.

You can get degrees in nonprofit management. You can go and take all kinds of classes or, all kinds of things online that you can find. And certainly you can go and learn all of the nuts and [00:21:00] bolts around nonprofit accounting, nonprofit management, board management. All of that, but when it comes down to it, you have to hire the right people, get them in the right seat on the bus so that they can shine and that you have to trust them to do their job.

And you have to listen to them when they say, this isn't working. We need to make a change. Because otherwise people are unhappy and they're going to leave and it costs even more money to hire and train somebody new than it is to get your current passionate employees into the right place where they can really make a difference.

Devin: Yeah, fair enough. I mean, I think that's just great. Like leadership advice in general. It's there's some trust, but verify in there, but it's let people do their jobs, trust them to to do it. And provide direction left to right if they need it or pull back a little bit.

Yeah, I mean, that's interesting. I've worked a lot with nonprofits overseas. Never [00:22:00] for a nonprofit, it might be an organization that does. Wells in Africa to provide drinking water or, setting up soccer fields in Pakistan I've seen all these things and it's like the people that are involved in these nonprofits are.

Just really the most incredible people because. In most cases, they're really not doing this for a big paycheck. And they are really trying to get out there, get their hands dirty and help other human beings. And I think it's just awesome.

Susan: Yeah, I mean, what would the world be if we didn't have non profits and volunteers doing amazing things around the world?

It would be a completely different world.

Devin: Yeah, it's very true. It's something I've really never thought of that way.

So we've talked about the history, your history, the history of casting for Recovery. Can you describe the organization as it stands now?[00:23:00] The vision as you move forward and what your current objectives are.

Susan: Absolutely. So at this time we have as I mentioned, we have 60 retreats happening this year. This is our largest retreat season to date. And we have close to 2000 volunteers around the country. And so how this is set up we're truly. We started off as a very grassroots organization with volunteers.

Continues to be that way. We have a vast volunteer network. We have 11 employees in the national office. They all work remotely and we have almost 2000 volunteers around the country. These volunteers are retreat leaders, oncology professionals. Anglers, um, some are even professional fly fishing guides that volunteer their time and many of them are alums of our program who come back to volunteer.

That's awesome. Which is really [00:24:00] wonderful. As we've grown. We've really had to look at where do we want to go? Where does this organization want to go? Because, um, we currently can't serve all of the women who apply for our retreats. We turn away two to three women for every one that we're able to serve.

But in order to If

Devin: I could just ask, how many women generally are there per retreat?

Susan: Yeah. We have two retreat programs. One is our traditional retreat program, which is the bulk of the retreats that we hold. And those are for women of any age, any stage of breast cancer. So women in their 20s through their 80s or early 90s, any stage of breast cancer.

And we serve 14 to 16 women at each retreat, and they're purposely small. This comes from our psychosocial guidelines, purposely small because we need the peer support and the oncology support to be effective. [00:25:00] These are not fly fishing clinics. Or we want to run 60 women through a beginning fly fishing course, there's much more to it than that.

So 14 women is usually the norm. A smaller program that we run is our metastatic retreat program and we currently have 6 retreats around the country. And this is an area that we want to grow. Those retreats typically serve 10 women. And that's because they're. their health needs are, can sometimes be more serious.

Their health concerns are very different than the larger survivorship population of women with breast cancer. And at this time that appears to be the right number for. Those specific retreats.

Devin: Okay. So 10 for metastatic 14 to 16, and you're still having to turn people away.

Susan: Absolutely. And we don't do a tremendous amount of outreach.

If we did a lot of outreach, we could be turning away more, over a hundred women for each retreat [00:26:00] that serves. Between word of mouth, physicians, support groups, online not outreach is typically a problem because there's just so many women out there who have been diagnosed with breast cancer.

Devin: Right. Yeah. It's the supply and demand at this point. Right. Obviously there's a hope to expand. I know, the myriad constraints that are placed on a nonprofit. It's you can only do what you can do. But I imagine that you are seeking some sort of expansion continually.

Is that right?

Susan: Absolutely. We had an expansion freeze back in 2019 because at that time, our national office was even smaller. We had fewer staff and we were having trouble keeping up with this eight month retreat season. And all of these retreat applications form HIPAA medical processing having four retreats every weekend and shipping [00:27:00] fly fishing gear back and forth.

To all these retreats, cleaning it, turning it around, shipping it back out. We had to put the brakes on expansion so that our infrastructure could catch up. And then of course COVID hit. And so that threw a curve ball at us. This is our first year that we've expanded in five years.

And so I'm very excited about that. But our growth needs to be strategic. And the way I look at CFR's growth is one, where's the greatest demand? For instance, in the Carolinas, we had without a tremendous amount of outreach, we had 90 something women apply for one retreat, they're expanding and adding a second retreat this year.

There are a few States where we don't currently hold retreats right now. Women in say. Illinois, North Dakota, Missouri, states like that, those women apply to the retreat closest to them, which is typically just right over the state line in an adjacent [00:28:00] state. I would like to see retreat programs come to those states.

The other area where I want to see us grow strategically is in serving underserved populations. And those might be women of color, women in rural areas where There's just not access to support groups or resources nearby without having to drive a long distance. Or attend a support group that's for all types of cancer men and women, everything and low income populations.

So underserved populations that are in need of what we do and this is a 2 fold. Approach. We need more outreach in those communities and we need trusted partners that women in those populations hear from and say, I want to apply for that. We also need to have more diversity in our organization. [00:29:00] I mean, when you think about fly fishing, we all hear the old, it's a bunch of, it's a bunch of old white men.

Well, that's changing dramatically with COVID we're seeing, more diverse populations in outdoor activity in some of these sports in fly fishing. And we need for our volunteer base, uh, to mirror that it's very important for people to be able to see themselves in another volunteer.

So if I'm a young woman of color, I angler that looks like me. Yeah. And say, well, if she can do it, I can do it. Right. And be attracted to the program because of that. We know when, we know people are attracted to our program, but we need our volunteer base to also mirror the women that we want to attract and serve.

And many of those fall into our underserved populations.

Devin: There's a wide spectrum there. I mean, you have Yeah. Very rural, very urban, people of different socioeconomic backgrounds different [00:30:00] races, languages, countries of origin how are you guys getting the word out and, or how do you plan to to direct the voice of CFR towards women in need that might not otherwise have access to, to fly fishing,

Susan: right? I think some of that comes with working with other nonprofits that are specifically serving underserved population and through them, we often have access through their communications, they will share our program.

I think it's also important for us when we're talking about women of color to have volunteers on our staff. And if we're talking about oncology professionals, recruiting more oncology professionals who are women of color to be volunteers on our teams, and then they are already interacting with a wide spectrum of women in their professional roles and they can be sharing the program.

That's another way. Obviously Working from the national perspective with [00:31:00] larger national partnerships with the sisters network and just other national partnerships that are specifically serving and wanting to help specific populations being able to partner with them on a national level and then having to do some grassroots outreach on the local level because underserved populations and minority populations in Alabama look very different than the same populations in Montana.

Right. It, it has to be a hybrid approach from national and local. Yeah.

And and on the border in Texas, I mean, there has to be, Spanish speaking volunteers and not even in Texas. here in Maryland, there's huge Spanish speaking population. And right.

To be inclusive, it's it makes sense to, to need the volunteers and the infrastructure to support all of that. But I think it's great. And it sounds like you guys are still it started off grassroots, but it's also, you're maintaining the like grassroots [00:32:00] values and like word of mouth.

, the word of mouth progress as you guys move forward. I just think that's so cool. Now you did mention that there was the freeze in 2019 and then obviously COVID hit, did you guys do any retreats during that first? Six months, year of COVID.

In 2020 we were very optimistic in the beginning that we might be able to hold retreats.

But with all of the unknowns at the time well, especially

Devin: dealing with the oncology patients. I mean, people with cancers, yeah,

Susan: with women with Immunosuppressed systems and just so many unknowns. We had to cancel our entire retreat system, our entire retreat season in 2020, and we pivoted to a more virtual programming we started.

Knowing that we couldn't hold in person retreats, we immediately started to develop some online resources to support women. We came back in 2021. We delayed the launch of our retreat season in [00:33:00] 21 by a few months just to make sure that we had our safety playbook in place in order to handle any issues that might come up at retreats.

And we definitely had people Test positive for covid during retreats, and we had to have a really robust plan in place so that our volunteers who are coordinating and leading these retreats felt confident that they could do it safely. Because it's 1 thing to take care of yourself and be safe. It's another to feel like you're responsible for 14 women who may or may not be an active treatment for breast cancer.

And keeping them safe. So we had a big, robust playbook training, all of that in order for them to feel confident to hold retreats in

person.

Devin: That's, I mean, that is awesome because the, the like kind of not to get into COVID and I don't, I certainly don't want to trigger any political debates from this, but the, I mean, I know personally it was like, [00:34:00] it was pretty, it's terrifying.

I had a little infinite home and it's we didn't. You just don't know what you don't know. And it's, very brave of you guys to, to work towards establishing such a robust plan so that your employees and the. The retreat guests can go there with confidence, knowing that they're going to have this experience, but not be absolutely terrified of COVID at the same time.

Susan: Right.

Devin: I know pre COVID, I would never have thought to do this interview. Online and, and it sounds like you guys made the right pivot and, did what you needed to do for that year and a half online, how much of the online resource infrastructure remains in place.

And because, obviously not even with just covert, but for potential for women that need help are resources available online if they're unable to attend retreats.

Susan: Yes. And I would say that [00:35:00] despite all of the downsides of COVID, this whole pivot to virtual has actually done a lot of great things for us because in the past, if we were training somebody new, I'd say we have a new medical facilitator coming on.

We would typically do that in person. And now if this person is in Seattle or, Palm beach, I can get on for an hour and I can train them and then they can go learn in person with their local team and with others. The other side of that is say for retreats in Texas or in Idaho or Montana, California, places where you might have women coming to our retreats from different areas.

And maybe they live seven hours apart. They oftentimes can get on virtually like this or on their phones and catch up with the person that might be their new best friend from the retreat. Hey, how did your pet scan go today? So tell me what's going on. So, what are you going to do? And this and [00:36:00] that so folks that can't get together and say, hey, let's go to lunch because they live so far away.

They can now hop online and even sometimes our New Mexico team for almost a year after their retreat, this group of women still wanted to get together once a month. And they did that with the help of their volunteer psychosocial facilitator who said, what. I'll continue. I'll do this.

I'll set this up and we'll keep doing it for as long as you guys want to. So it turned into after the retreat, this once a month, I'm going to call it a support group, but it's really these women getting together and saying, how's it going?

Devin: I mean, that the value in that is you know, it's incalculable.

You can't quantify it. Even just like I, I get it to some degree. I mean, I'm just through COVID it's like the ability to like talk to family and talk to my friends and, uh, share stories and [00:37:00] just connect, at least be able to see someone face to face is right is so important, just for mental health.

Yeah, can you describe and, give us some details about the specifics of what a retreat looks like for any women that might be interested?

Yeah I know

Devin: that some

Susan: people who may be listening, maybe I could never do that. I'm not even interested in doing that. I always like to give the disclaimer that.

Anybody who comes to 1 of our retreats doesn't have to have any interest in fly fishing or any experience with fly fishing. And for anyone who might think, and I don't know that I'm strong enough to do that or, I don't know, just might be wavering. I would say that give it a shot. Because what you get out of the retreat is so much more than you might be thinking.

It has to offer. First of all, women apply to our retreats, and then they are selected [00:38:00] randomly. And it doesn't matter if you're the first one to apply in January, or the last one to apply right before the deadline. We select 14 women, and then we always select up to 20 alternates, because we have women cancel for all kinds of reasons.

And then, everything is free. You do have to cover whatever your transportation is to get to the retreat, but then meals, lodging, we bring all the gear, all the supplies everything is covered at no cost. It's always been that way for CFR so that women from all backgrounds have equal opportunity to attend and benefit from our program.

And once they're selected, they're typically selected 10 weeks before the retreat. This gives us time to Get all their paperwork in. They get all the information, ask questions. We have someone dedicated to helping, onboard these women. So that when the retreat comes, they don't all of a sudden back out because they're like, yeah, [00:39:00] I still don't really know what this is all about.

They're going to have a pretty good idea what it's all about. They arrive at the retreat, typically not knowing anybody. Which is where some people can feel nervous. They may wonder, is this. Is this going to be a downer? Is this going to be too intense for me, too physically intense for me? And I would tell anybody that we have had women who use wheelchairs come to our retreats, women who use walkers or canes come to our retreats.

Women, of course, in active treatment with no hair come to our retreats. Also women who are 20 years out and incredibly inspiring and have been Living their lives post breast cancer. We have had women visually impaired completely blind come to our retreats. Women where English is not their first language come to our retreats.

Anything that we can do to accommodate someone. If we can safely accommodate their needs, we want to do it. We want them to [00:40:00] come. So I, I like to throw that out there first because it's important that no one shy away from our retreat because they think it's going to be more than they can handle.

We want to support you and we want you to come.

Devin: And just a random question while on that topic for a woman who's listening to this and is just getting anxious because they're really shy.

What would you say to them?

Susan: First of all, that's a really good question. And I say that cause we have plenty of women who might shy away from applying to a retreat because they may think, I don't want to talk about my breast cancer. Or they may not feel like they're capable of doing that because they're shy or they have anxiety.

There is absolutely no pressure at our retreats to talk about your cancer experience journey. And, there's there, there's no, you're not going to [00:41:00] be asked to talk about it. If you just want to listen to other folks, or if participating in our evening gathering, which is more like our support group, 101 if that's something that you're not comfortable attending you always have the option to not attend.

A session that we're having at our retreat. So there is zero pressure in that regard. Okay. And I wouldn't want anyone to shy away from applying for a retreat because they don't feel like they can talk about it. The flip side of that is I also wouldn't want anybody to shy away from attending a retreat because they say.

I don't need it. I'd rather let somebody who is more in need do that. And the reason for that is because I've had women say, you know what? My cancer was 15 years ago. I'm healthy. I'm doing great. Someone else should take that spot. Well, the truth is that person that's 15 years out from their treatment.

It's so inspiring and [00:42:00] has so much to share and give to someone who is more newly diagnosed. They're an inspiration. And so they have a lot to give to that retreat group as well. So I would encourage everybody to apply if they're interested.

Devin: Perfect. Tell us what the retreat looks like starting from when the participants arrive.

Susan: so they arrive and they all typically will have a roommate.

We get them settled. The first night is really all about getting them comfortable, helping them transition from work, daily life, caregiving of kids, caregiving of parents, partners, spouses, whatever it may be, a really light transition into. The retreat, and so that may come with a group gathering introductions, letting them know what the retreat's going to be like, and just give them the opportunity to start bonding with one another and with the staff.

And fewer numbers of staff attend our retreats than the number of women who attend. So they don't feel like they're overwhelmed . So [00:43:00] typically, we would have 10 or 12 staff members who again are. Oncology professionals, retreat leaders, hospitality, anglers, and those will all be women for that core retreat time.

The second day of the retreat is a combination of breast cancer support through our oncology professionals and a whole lot about fly fishing some connecting activities. They learned how to cast a fly rod, what the gear is all about. What they need to be safe on the water. There's a medical session where they get to learn more about the physical effects of breast cancer.

And those are not like seminars where their information is being, given to them, it's really an exchange of ideas. And our oncology professional is going to have some specific topics in mind, but it's also playing off of the group and what they want to talk about. We talk about how to safely land a fish and release a fish.

We're [00:44:00] working with conversations around conservation, what fish need to be healthy. We also provide a block of free time so that women can hang out with each other and spend time with each other. These new friends that they've made. We go into an after dinner session that's all about the emotional effects of breast cancer.

What I would call a more, Support group type session and again, they're going to follow where the women are going. What's important to them. Whether it's if it's 1 of our traditional retreats, it might be around a fear of recurrence talking about things. They can't talk about with family or friends, or they don't want to talk about with them.

Maybe it's around, just being able to lead a really positive life, a beautiful life after being diagnosed with breast cancer it might also have to do with more personal things like sexuality and your relationships after a breast cancer diagnosis. Or a fear of pain and things like that.

And again, [00:45:00] how to live out their lives. As best they can as beautifully as they can with their family and friends. And so those conversations are a little bit tougher again. That's why having retreats exclusively for women with stage 4 breast cancer are so important because what they're talking about might scare family and friends, or this other population of women with breast cancer who are not stage 4 the metastatic breast cancer population.

Is severely underfunded and under supported. And that's why I feel passionately about expanding our metastatic breast cancer program so that we're serving those women after that night. Oh, go ahead.

Devin: Well,

and there I, I just did a little bit of research before this as well. And there's. There's several on JSTOR and EBSCOhost and the academic journals and Journal of Medicine and nursing and all that stuff.

And I mean, there's studies [00:46:00] that highlight the one the benefits of fly fishing for women with breast cancer, both physical. And mental, but one of the more interesting things I read was about spirituality and how spirituality affects recovery and also just dealing with breast cancer.

And I assume, just like everything else, I mean, the spirituality or faith spectrum probably. Runs from atheist all the way to, staunch believer, whatever. How much in, in, in both retreats, both the metastatic and The more traditional how often does spirituality play a role in these retreats? And do women engage in discussions about that? And how does that work?

Susan: Absolutely. I think that we're not a faith based organization. I think that conversations often turn to where [00:47:00] people find the power to go on when they're dealing with. Recovery from disease or dealing with ongoing disease. And I would say that there's lots of discussions about that. What gets people through the day on a day by day basis.

Many times it is who they have in their life to support them. And faith can play a role in that. How they're still finding meaning in their life. I hear women say that helping and supporting other women with breast cancer also helps them heal. And I think a lot of volunteers feel that way.

Sometimes I hear people say, I feel like I got more out of it than they did just being able to volunteer for an organization, but we hear it. We hear all of it. Sure. Around people's spirituality, whether it's traditionally faith based or it's nature based. I want to say that many times, [00:48:00] regardless of people's whether they're heavily involved in organized religion, or if it's a more private matter of spirituality that everybody feels closer to that.

When they're in nature and so nature is really a foundation, I think, for anybody's spirituality, regardless of where their faith lies. But we welcome all voices and all beliefs that are retreats. Great. It's very welcoming in that sense.

Devin: So you touched on the traditional retreats the metastatic retreats kind of day one, day two but I think I cut you off about day three and how things wrap up.

Susan: The first day and a half of a retreat are all about helping the women bond of course everything about fly fishing, getting them ready for the final day of a retreat, which is what we call Fishing Day.

On the final day of a retreat, we break out of this intimate bubble of just our retreat staff and participants that we keep pretty intimate and closed up until this point. And [00:49:00] on Fishing Day, We bring in fishing guides from the local community. These are men and women who are proficient anglers.

Sometimes they're even professional guides, but they are anglers that have been trained specifically for casting for recovery. To come out and fish one on one with a woman on our final day of fishing. This is a really exciting day for a number of reasons. One, the women are putting everything they've learned into practice on the actual water.

The second part of that is that. There is a certain relief combined with exhilaration that happens on the final day. The relief comes from having found everything that we talked about earlier, new support, new information, new friendships, new opportunities to share. Some private things about their breast cancer journey in a safe and supportive environment.

So they have been [00:50:00] able to share some of that, which can be an enormous relief. There's been a lot of laughter. There's been some tears. And so this relief that comes with also trying something entirely new on the final day. There's just a lot of emotion around that. So we put these folks out on the water for about three hours.

And the rest of the staff is supporting that experience through sharing whatever flies that are working sharing all of the safety that we put into place on fishing day. There's a lot of hooting and hollering, , and sometimes we have to force some people out of a honey hole and say, you've gotta share this honey hole with some other folks.

Right? You can't be the only person that's pulling all these fish out. There's always one. And the folks that we bring in to be fishing guides on the final day are really amazing. They are there for all the right reasons. Many of them have had their own cancer experience, either personally.

Or through someone in their life that has experienced breast cancer, and they really have a passion for sharing fly [00:51:00] fishing with the women who come to our retreats. And so it's we have laughter and tears on the water also and some real powerful relationships are forged. I've seen women that maybe don't have the physical strength to fish for 3 hours and sometimes I look over and there are.

In depth, intense conversations going on between a fishing guide and the woman that they are guiding just sitting down on the bank. And that's really powerful too. That's part of this.

Devin: Yeah, that's incredible. It's gotta be just such a special experience. Yeah.

Susan: And as much as the women sometimes are a little nervous about meeting their.

Their quote unquote guide because want to maybe, they live up to their guides expectations which, and the guides expectation is really only that their participant have [00:52:00] an amazing day on the water in nature. The flip side of that is that our fishing guides are equally. Nervous about wanting to be a good guide to be a good companion on the water for a day.

They're equally nervous about wanting to live up to their participants expectations of what they want on the water. So, they go into this new found relationship. They get introduced to each other. They tie on whatever fly they think is going to work. They work together on that and they wait out into the water.

Oftentimes arm and arm. And I think they're both a little bit nervous getting to know one another. And then, over the course of that time, they both relax, figure out what each other wants out of the day. And, and hopefully fulfill that. It's incredible to watch.

Devin: I am like so sold. I want to, well, that actually brings up another question.

Can are men involved at all? And how can men volunteer? If if that's possible.

Susan: Yes. The [00:53:00] local volunteers that come out to guide women one on one are all men and women from the local community. And but we also have plenty of people, men and women who. Tie flies who fundraise who get employee matches from their companies.

I mean, some of our national partnerships come from men out in the community that say, my company should be involved in this should be. Should be sponsoring or partnering with you guys. There's plenty of men in fishing clubs and to you chapters who support us. And so absolutely it's as easy as filling out a volunteer application on our website.

And then we will find the best way to bring them into the fold,

so to speak.

Devin: Awesome. Very cool. How have you heard, or what have you heard about? The impact on the families of the retreat participants after a retreat, a week after the day after a week after month after.

Susan: Yeah this gets me a little choked up, but I'll try not to make anybody [00:54:00] uncomfortable.

At at our second retreat in Texas a woman named Jane was there. And I'm visualizing a picture of her with a bent over fly rod and we had to call her back because she got into the water. It was about to get up over the top of her chest waders. And we were like, Jane, you've got to move back into shallower water.

And her guide was like, I'm trying to get her back. And about a week after her retreat, I heard from her husband. And he said, when she came home, he saw a change in her and he said, I haven't seen her smile like that in 2 years since she was diagnosed. And it was so powerful to hear that and we hear from I,

I just watched a donation come in yesterday. And it came with a letter from some parents who said we are, we want to support the New Jersey program this year so that other women can have the experience that our [00:55:00] daughter had. And it was amazing for her. She had an amazing, meaningful experience and we've seen a change in her after that retreat and we want more women to have that experience.

So this is donation. This is a donation and honor of our daughter to help this program continue. I hear from people all the time about their daughters, they're giving in memory of their mom who may or may not have attended a retreat their. Sisters in law all the time that their experience was life changing for them.

Devin: And

it's incredible too. I mean, breast cancer is such a global threat. And I have trouble thinking of anyone who hasn't somehow been impacted by breast cancer. In one way or another. Be it family, friends, neighbors it's so prevalent. And it makes sense that a positive impact like casting [00:56:00] for recovery can not only help the woman who is going through this, but, have a broader impact on the family at home, the colleagues at work, the neighborhood.

So it's just the power for, positive growth, even with breast cancer. Is incredible

Susan: Sometimes you don't know what you need, I think if you're someone who was really engaged in the outdoors before your diagnosis and you're trying to figure out how to re engage. Or maybe you're just stuck and you don't know how to get out of that.

Your family and friends, parents, children, spouse, partner, they see that. And I think what we hear a lot from women is that once you're done with your treatment. If you get to that point and your physician says, all right, you're good, you got [00:57:00] clear scans. You're done with treatment. There's this big drive home and you're like, okay, I'm quote unquote cured or I'm in remission.

Or if you're metastatic, my scans look good. My cancer isn't progressing. I'm doing good. Sometimes people are like, okay, you're good. So you should be back to normal and the same person you were before you were diagnosed, but you're just not the same person. You have been through something traumatic.

And You're not the same person and you're probably not going to be the same person. How could you be that person? And folks can't always wrap their head around why you don't go back to everything you did before you were diagnosed. And so this is where people get in their head. And sometimes the support stops.

You've had all this support through treatment. I'll come walk your dog. I'll come cut your grass. I will take your kids to school. I'm going to take over caring for mom and dad while you're dealing with this. Whatever that is, [00:58:00] people think you can just pick up where you left off, but you just can't because you're not the same person and a casting for recovery retreat allows you to be with other folks who say, yep, that happened to me.

All the support stopped and I was like, I'm not the same person anymore. Where do I go from here? And so to come to a retreat and maybe get to hit a big old reset button that says. Okay. Let's try something new. Let's get you. Let's cut whatever that plateau you've been on and try to get you to a next level where you can jump from and hopefully start a new path optimistically forward after your cancer is really big.

And I think that for folks who are worried about someone see, you have a daughter that's been through breast cancer and you're just worried about her. You've seen that. She's still not. She's still not thriving. You want her to thrive. Maybe she's surviving, but she's [00:59:00] not thriving right to see her come back from her retreat and to see a change in her.

That's very positive as a parent. You're going to be relieved. And grateful, maybe it's your spouse or partner, and maybe you just have a new energy for being a parent, for being involved in community events, being involved in something new, trying something new after you've tried fly fishing, which is something you probably never thought you would do, um, a year before when you're in the middle of treatment to be in waiters out in water, casting a fly rod, nobody would imagine themselves doing that and you come back and you say, you know what, if I can do that, I can do other things.

What are those things I might want to do? So that's what I would say.

Devin: What

if you have some just maybe a couple examples of that plateau, , shooting up after a cast for recovery, even if someone still has breast cancer and, isn't necessarily in remission, how I know we, we spoke before and you mentioned that a lot of women get into fly [01:00:00] tying, it's something you can do at home.

It's almost easier to get into than actual fly fishing just because the logistics are a little bit easier. But, what are some examples of like real positive growth you've seen from participants be it in fly fishing or, in business or just in life,

Susan: I think that so much comes from the support and engagement that happens at retreats.

And A lot of alums come back to volunteer with CFR. Some of them even become program coordinators and start new programs in states where we don't have retreats already. So they come back to give back and that only furthers the support and engagement in that realm. Some become avid fly fishers.

We try to provide a ramp for those that want to continue with fly fishing for them to get engaged with local fly clubs, women's groups, United Women on the Fly, Sisters on the Fly, Texas Women Fly Fishers, Georgia Women Fly Fishers, different groups where if they want to continue, [01:01:00] it's an easy on ramp to keep going.

We do have quite a few women that get into fly tying. It's meditative. You can drop it and go pick up the kids at school. You can come back home and pick it back up while you're watching something on TV. For others it's just an, it's just a renewed energy to pick up where you left off with things that you are passionate about in your life, whether it's, um, if you're an athlete.

Resuming that in its same form or in a different form, but it takes a lot of forms. Maybe it's for someone who has not gone out and done something on their own. Since their diagnosis, they come to a retreat on their own. They get dropped off or they drive themselves there.

Maybe it's the 1st thing they've done on their own. Maybe that is a catalyst to resume traveling. On their own. I think there is something that comes from going [01:02:00] to a retreat on your own, not knowing anybody and trying something entirely new that makes someone go home and feel a little more confident, a little more brave and a little more empowered.

And that can lead to a whole lot of new things in people's lives that, that take them all kinds of places.

Devin: It's great. It's great just before we wrap up here can you, and you touched on it before, but can you Tell us a little bit more about the future goals and aspirations of casting for recovery, be it short or long term.

Susan: Absolutely. Short term. I think anybody who comes in new as an executive director sometimes they make dramatic changes. I don't want to make dramatic changes. I just want to elevate everything. Which is a very optimistic goal. I'm an optimistic person. Yeah. I want our fundraising. I want to shoot for the moon and go big with our fundraising because [01:03:00] that allows us to do all of the other important personal work that I want to see happen with CFR.

So we've been around almost 30 years. We know what we're doing. And I want to be able to provide our program to anybody and everybody. Who wants to participate in what we do? We have affiliate programs in other countries. Oh, I want to see more of that. We we had an affiliate program in the UK for about 10 years.

I would like to see that come back. We have current programs that are extremely popular in Australia and New Zealand. We had a few that are, I'm hoping to see launched in South America COVID. Again slowed some of that down. There's a program in Iceland. There's a program in Italy that is still on hiatus because of covet because they were funded by the hospital system.

But I have to say that part of. My [01:04:00] elevation wanting to elevate CFR also goes hand in hand with a lot of very important programs out there, like project healing waters, wounded warriors, real recovery other programs that are using fly fishing as a therapeutic tool. We are all trying to help people through the sport of fly fishing.

I'd like to see greater collaboration with them. We already share volunteers because fly fishing, those folks love to give back in, in many ways. I want to see us having more programs. I want to see our volunteer base even larger so that we are supporting more women out there. A lot of that has to come with us elevating our fundraising so that we have a larger national staff that can train more volunteers that can launch more programs.

And I want to see all of that happen. And yeah that's my big goal.

Devin: If individuals, small business owners. Corporate entities are [01:05:00] listening. What is the best way for them to get involved and

to help?

Susan: If corporations, businesses, anybody want to get involved and want to talk about partnering with us it's it's just a matter of reaching out to us and for folks that want to volunteer.

Our that information's on our website. If someone just wants to donate it's as easy as going to casting for recovery dot org and going to our donate button on the website. But we have partnerships with small groups with large corporations with individuals. And the goal with that is always for it to be mutually beneficial.

Whatever corporations want to get out of it we devise our partnerships in many different ways so that we can make that happen. And we collaborate with them and we develop unique partnerships so that they feel like they're getting something out of it as well. And then again, we're.

We're just grateful for any kind of support or partnership that we can add to what we're [01:06:00] doing to elevate the work we're doing.

Devin: Okay. That's great. Can women apply earlier, you mentioned that there's an application period that opens up in January and then a deadline and that people are selected at random to participate.

Can you, can women apply to multiple retreats or is it only, are they only able to apply to the one that's closest to them?

Our retreat season runs from March to November.

Devin: And depending

Susan: on if your retreat is in Florida or Alaska or wherever it may be the actual retreat may take place in March if it's Texas, because we're not going to make anybody fly fish in August in Texas.

That would be miserable. And our colder, yeah, our colder geographic areas will mostly have their retreats in the summertime. So our applications run I think our last application deadline is in August and that would be for a fall retreat. So the [01:07:00] easiest thing to do is to go to our website, go to the retreat section and see where the retreat closest to you when that deadline is.

So if you live in Minnesota or colder state or Alaska 10 weeks. Before the deadline you should only apply to one retreat a year and it does need to be the retreat closest to you. We know that everybody would like to go to Alaska or Montana or Hawaii and fly fish, but the purpose of doing that is so that you can build community and friendships and find ongoing support with people in your area.

And so that's why we do that. And so our deadlines are rolling, depending on when the retreats are held across the country.

Devin: Okay.

Do women have contact with their roommate? Before they get to the retreat, or is it you show up and everybody's truly brand new, like showing up

at college.

Susan: No one's ever asked me that people do not [01:08:00] typically have any contact with their roommate before the retreat.

Part of the reason for that is, hIPAA related and us releasing people's information if they haven't previously given us permission for that, or sometimes we have cancellations and we have to like call an alternate sometimes, even up until the day of the retreat. So those roommates may change.

We do try to match up roommates based on all kinds of things. We match up roommates very carefully based on sleeping preferences. Do you snore? Do you like a hot or cold room? Things like that. We do look at that. We also look at when women were diagnosed, where they're from, if they have a a rare type of breast cancer that someone else might also have, we would certainly put them together because they'd have a lot to talk about.

If women coming to a traditional retreat, if we have two women with stage four disease, We would put them together because that's a big commonality or [01:09:00] an area for them to have lots to talk about. If we had two women in their twenties at a retreat, we would put them together. They were going to have a lot in common.

So we do our roommate matchups very mindfully. But no, people don't typically know who they're going to be rooming with ahead of time.

Devin: Okay.

And it's like life is happening. I mean, that person who's 15 years out might still be suffering, whether it's depression, anxiety whatever symptoms remain of their, the traumatic experience of going through breast cancer.

I mean, it's like anyone could benefit from it.

Susan: Absolutely. Sometimes you don't realize you still have issues to work through until you address them where you start talking with others or you're like, Oh, you know what? I actually. I actually still do that, or, huh, hadn't thought

about that.

Devin: Yeah, for sure. I think I'm a perfect example of someone who thought they didn't need any help.

But then it's oh, you know what I think some [01:10:00] therapy or some fly fishing would be incredibly helpful and beneficial to me. That

makes a lot of sense. Yeah, we could all benefit

from a little more therapy and fly fishing.

In conclusion Susan, thank you so much for being here on Mending on the fly. I really appreciate it and we'll conclude with the whip finish just like we're tying flies So if you have any final thoughts or messages that you'd like to offer from casting for recovery The floor is yours

Susan: Thank you so much again for having me here today.

I would just say that if this has sparked an interest in anyone as a volunteer, as a donor, as a woman with breast cancer as someone who. Know someone with breast cancer who might benefit from casting for recovery. Just reach out to us. We're we're a very casual approachable group.

We're easy to find and connect with. And I would be happy to talk with [01:11:00] anybody out there. Jus there. Just visit our website, castingforrecovery. org. Check us out. And I would I would love to talk to anybody out there about what we do. That's awesome. Thank you

so much. You're welcome. Thank you. And where can people find you guys on social media?

Sure. Facebook, uh, Instagram casting for recovery. We're super easy to find.

Devin: Awesome. Thank you very much, Susan. And I look forward to You reviewing my volunteer application soon.

Susan: Awesome. I look forward to that too.

Like I said, if one person finds us, it's all great, but we know a lot more people are going to find it,

so. But

Devin: I really appreciate it, Susan. You took a leap and, some random guy reaching out on LinkedIn. I can't believe it worked out. It's cool that this has come into fruition for me.

And I'm, it was really nice talking to you and meeting you. And I hope sometime that we'll meet in person and I hope to volunteer here in Maryland and Virginia sometime soon.

Susan: That would be nice. Yeah, [01:12:00] absolutely. Our paths will cross again. Fly fishing is a small industry. It is. It's a small

Devin: world.

It is. Well. So Susan, thank you so much. I appreciate it. Absolutely. It was great talking to you. Have a great weekend.

Susan: I appreciate it. You too. Bye bye.