There is no real way to tell this story—and it would be a disservice to these women to do so—without stating the obvious up front. This was a Casting for Recovery retreat, the first of its kind for women with Stage 4 Distant Metastatic Breast Cancer. In very straightforward terms, this is not survivable. It’s not if, but eventually when. The cancer has metastasized beyond the lymph nodes and settled in either some of, or all of, the brain, lungs, liver, and bones. At this point, there is no realistic hope of defeating it, but there is hope for prolonged survival; there is still life yet to be lived. I witnessed their self-deprecating humor, dry wit, relentless willingness to fight, and remarkable courage.
For 21 years, Casting for Recovery’s mission has been to offer a path to recovery, both spiritually and physically, from breast cancer through the gentle motion and grace of fly fishing. The act and arc of casting gently moves the parts of the body most affected by the disease and treatment, while the natural arena in which the retreat takes place provides perhaps the greater aspect of spiritual healing. A two-stage rebuttal to an insidious intruder.
Thankfully, in more and more cases of breast cancer, there is recovery. To date, the retreats have included all stages of the disease, from diagnosis to stage 4, but it has always been difficult for the Stage 4 participants. As the women themselves put it, humorously and inelegantly, they were the elephant in the room, the other participants’ worst nightmare personified. The Stage 4 participants often sat quietly, unwilling to open up and expose the others to the reality they faced. After a trial program last year, this year’s retreat in the Appalachian foothills near Helen, Georgia, was the first of its kind: Stage 4 was the singular focus, and the conversation was finally theirs alone to have.
It would be impossible to tell every story, so I will tell one. Christine Rogers is a beautiful young woman in her very early 40’s, though she looks 25, who has two teenage sons. If you saw her on the street, you would never know of the access ports in her body, the weakness in her arms, the fragile nature of her bones. When not discussing the cancer, her demeanor would have never revealed it. She spoke matter-of-factly at times, but sass, humor, and defiance were obvious. I spent the day with her, driving her to the river, watching her fish, sitting with her on the porch. I asked the questions that those who’ve never faced this would ask. We can’t imagine; we can only ask. It felt intrusive. She never hesitated.
“When you hear ‘stage four.’ First thought?”
“Stage 4 means keep fighting, keep trucking on, don’t give up. Just don’t give up, and hope there’s a cure out there they can come up with. In 2010, I was diagnosed with Stage 1. Then in 2015, I had some back pain and found out I was Stage 4, had it in my spine, my lung, and my liver.” She went on to describe an unfathomable host of treatments. “I was almost NED [no evidence of disease] until 2017, and then I had a spot come up in my iliac and one in my spine.”
Dr. Lakshmi Balasubramanian, the oncologist for the retreat who specializes in the treatment and ongoing research for breast cancer, explained to me what Christine faces.
“Cancer in the breast is not life-threatening. But when it spreads to other parts of the body, it is a race against time. Since Christine’s cancer came back as Stage 4 metastatic breast cancer, she is in need of life-long therapy in order to control her disease and make it compatible with life until hopefully, a miracle breakthrough in her armamentarium of cancer treatment becomes available in time. As treatments fail from resistance developing in cancer cells and new sites of cancer occur, or as tolerance to treatment declines, we switch therapy to new drugs or clinical trials to buy time, but at her age this cancer is expected to be cause of her demise. Thankfully, research is ongoing and new targeted therapies become available, but so far a cure for her disease still evades us.”
I asked Christine if this becomes overwhelming at times.
“Oh yeah. You have times, especially when they’ve found another spot. I go into what I call a ‘mourning stage,’ where I’m upset and have to mourn that. And then I go into an angry stage, where I get aggravated and pissed off. And finally, I’m like, ‘Okay, here it is. This is what I’m dealing with, so what do I need to do to fix this problem?’ I pull up my big girl panties and move on.” Her face lit up with a grin, her humor my signal that it’s okay to ask. She talked of her family.
“I’ll be honest with you, it’s not what our world revolves around. I don’t want my health to be what my children’s lives revolve around. So, we don’t talk about it on a daily basis. We don’t discuss it. I don’t always tell them when a new spot comes up, because I don’t want their lives to be about mom’s sickness. I want their lives to be normal, and I try to keep it like that as much as I can. And as far as my husband goes, he knows everything. He lets me talk if I want to talk about it. I let him talk if he wants to talk about it. We joke about it, we make fun of it, and then we pick up and move on.”
“But your life has been altered.”
“It has altered my life and it’s very discouraging because I see women that are my age—I was thirty-five when I was first diagnosed—and the things they can do or could do, and I’m limited in what I can do now. So that is very frustrating for someone who is as active as I am.”
For the first and only time in the conversation, her vulnerability appeared, tears welled up, and her voice broke slightly. There was no self-pity in it. Well-deserved anger perhaps.
“So, for me, that’s hard, as I’m sure it is for other women in this position. I get frustrated because I am so independent. I don’t want people doing things for me. I want to be the one doing things for other people. It’s hard for me to say, ‘Hey, I need some help.’ Believe me, I’m going to try and do it first, and if I can’t then I ask for help. It’s tough.”
What she did discover at this retreat is she’s anything but alone, and for once these participants could speak their mind, be themselves, share their stories, and laugh out loud. Stage 4 was the common denominator, a shared enemy they face with grace, anger, doubt, and a litany of other emotions one can only imagine, but ultimately together. They called themselves the Met4 Casting Divas.
“We’re all Stage 4, and it’s easy to discuss and talk about the meds we are on and where we had been diagnosed; that it may not be there anymore, but it moved somewhere else. It was good for me to talk to others in that position. I try to stay upbeat, but I think some of them at times have a harder time. Some of them might not have the support that I have. I’m very fortunate that I do have a very good support group. I’m lucky in that respect.”
“Lucky” is not a word I would think applies, and yet I heard it more than one would expect. Nothing diminishes one’s own challenges quite like coming face to face with others facing the same or even greater, and perhaps that’s the retreat’s greatest gift.
“I’ve had the best time this retreat,” said Christine. “I wasn’t sure what to expect when I came, or on my way here. I get nervous about things like that, but it has been such a fun time and the women I’ve met have been so interesting. The women that run the retreat are phenomenal. They cater to your every need, they’re there for everything. If you want to talk, if you don’t want to talk, if you need something. I’ve not had one want since I’ve been here.”
Many of the all-volunteer staff on the retreat are breast cancer survivors, including Georgia Program Coordinator and Retreat Leader, Beverly Booth. I heard someone call her the “energizer bunny of CFR,” which is a well-earned moniker, as I watched her seemingly appear in multiple places at once to keep the retreat on track. Coordinating the movements of all the participants, attending to their significant individual needs, and keeping the support staff, guides, medical staff, and the likes of me going in the right direction is a substantial undertaking that would do any military operation proud. She is defined by her insanely loud whistle, which left no doubts as to who was in command here.
On Sunday, the women went fishing on the Chattahoochee River, which is just a quiet freestone meandering through the town of Helen. Each participant had a support group of a guide and a river helper, and there were other staff members up and down the river including medical personnel. They are physically fragile, and standing in a river is not easy. One sat in the middle of the river in a chair, undeterred by her fragility. Their bones are weakened, and a fall could be potentially disastrous. The day before, they had taken a two-mile hike up to Dukes Creek Falls. Hydration and pain meds were monitored closely. They were pushing their limits. Flanked by a river helper and a guide, they stood for three hours in the river.
Christine’s enthusiasm was infectious, albeit not technically helpful in the gentle art of setting the hook. She laughed, cracked wise, and every time the indicator moved, she ripped the rod skyward as if setting the hook on a tuna. But it didn’t matter, for cancer was the last thing on her mind. She caught two good fish, the second one the biggest of the day. The bend in the rod, the fight in the fish, and the smiles and cheers of those surrounding her was life. While this was designed to benefit her, in truth, those of us around her perhaps benefitted more.
At day’s end, the guides, the helpers, and the participants stood in their waders, fly rods leaning against the trucks, and told stories. I’ve witnessed this a hundred times on fishing trips from Bristol Bay to The Bahamas, a post-fishing ritual of shared experience. This scene was no different, nor should it be, and that’s the point. On this day, cancer was shoved aside, and living took precedence.
There was one last question I asked Christine at the end of the day. I half-jokingly told her that if it was too intrusive she could tell me to go to hell, quietly hoping she actually wouldn’t. It’s a question we all face sometimes, but in this context, the ramifications dwarf all else.
“Are there days or times when you just get to the point you feel like screw this, I’ve had enough?”
There was anger in her answer. It was startlingly fierce, but unquestionably directed not at me, but the cancer. The odds are stacked against her and she knows it.
“No! I’m going to fight my last fight, I’m going to fight to my last breath. I am not giving up. Not doing it,” she said shaking her head emphatically. “I’m not that far yet, and I don’t want to get that far. Everybody has things they deal with, and everybody deals with them in a different way. You know, I just have this thing about life. I just want to live life, I want to be involved with my kids and see my grandkids and if I get to do that great. If I don’t—it will be what it is.”
Orvis is a proud founding sponsor of Casting for Recovery. To find out more about Casting for Recovery, their programs and retreats go to castingforrecovery.org. Paul Fersen is Orvis’s Senior Writer.