In 2006, Lillie Shockney, Professor of Surgery at Johns Hopkins University, launched a retreat program for patients with metastatic breast cancer, a weekend-long retreat in which patients, their spouses, and caregivers can focus on communication, support, relationships, personal reflection, and laughter. In 2016, Janie Metsker, Clinical Coordinator at the Koontz Center for Advanced Breast Cancer at St. Luke's Hospital, launched these retreats at her own institution. In this interview with Oncology Data Advisor, Ms. Shockney and Ms. Metsker reflect on the impactful moments that take place during the retreats and their profound significance for the patients who attend.  

Frankly, I think these women that have passed away and done this hard process might be doing a better job rearing their children than we are here on this earth. Because these children don't throw these cards away. They read them and they do everything that is written in them. Some years back, I got a phone call from a young woman I had never met, and she said, "Oh, my gosh. I didn't know your last name; I just knew your first name is Lillie. You took care of my mother when she was dying of breast cancer. My mother died when I was 10. Each time she'd come home from the hospital, my dad would recruit my Aunt Sarah, my mother's sister, to come over and help him take care of her. I'd hear my mom say to Aunt Sarah, "Lillie said to do this, Lillie said to do that.' But I didn't know who you were or what you were telling my mom until she passed away, and my Aunt Sarah became the keeper of my cards."

She said, "When I got my driver's license, my mother had a card for me. I saw her blue handwriting"— we've lost because everybody types and texts, which makes me nuts, I still want people to learn how to write and cursive—"and it said, 'Please do not drive like your father. Please do drive like Aunt Sarah.' She just cut to the chase." She said, "I wanted to find you. I'm so glad that you're still at the Johns Hopkins Breast Center, because three weeks ago when I got married, as my Aunt Sarah helped me put my veil on, she handed me a card from my mother. I opened the card. The envelope edgings had yellowed because it was 14 years old. I took out the card; it was a beautiful wedding card. I opened it up, and my mother had written at the top, 'I know you would've chosen wisely who was deserving to have you spend the rest of your life with.' In the middle, she wrote, 'Marital advice. Don't ever go to bed angry with one another. Whatever it is can be talked through.' At the bottom, she wrote, "When your dad lifts your veil and kisses your left cheek, you will feel me kiss your right.'"

She said, "Miss Lillie, I swear to you I felt my mother's kiss. I have always felt my mother's presence through these cards. I asked Aunt Sarah if there are any more cards, and she didn't answer me. So, is this my last card?" I said, "Do you plan to have a family?" She said, "We hope to start a family in about a year and a half." I said, 'When you learn you're pregnant, there's a letter from your mom describing how she felt when she learned she was carrying you. When the baby's born, there's a letter from your mom describing how she felt the first time she held you and all of her hopes and dreams for you. When the baby is a toddler, there's a voice recording of your mother saying nursery rhymes and children's stories so your children will know their grandmother, too." And she said, "That'll be perfect."

So, this card process works, and if anybody questions it, all they have to do is just hear that story and they'll know. I've heard from other women that are grown now too, who said, "You have no idea how important these cards are." When someone goes to a card store, like for a graduation card, those cards are seasonal. They're only in the store for May and June and then they're gone. I tell people to pick up another card, get one more, because otherwise it can be difficult when you're trying to find these cards to be able to do that.

We do surveys at the end and surveys again three months later and a pre-survey as well. One of the questions is, "I am fearful for my future." Most women will score that very high. They're quite frightened about what lies ahead. While they're still at the retreat, they might score it, let's say, instead of being an eight or nine, now it's a four. Well, you really know how well the retreat went when you ask them again three months later, that this just wasn't a weekend and that it wore off, that this is going to see them through. It's rare for someone to score themselves above a four, three months later, If they're still alive. It's profound.

I'm particularly proud of Janie for having decided, "I want to do this for our patients, too. I want to take this on, and I want to make this happen every year." So, Janie, can you talk about yours and the event that you do in the evening for the couples in particular? And then I'll tell them what event we do that's so much fun.

Ms. Metsker: I want to follow-up a little bit about the cards, and I just love those stories. We also do cards—and being here in Kansas City, we have been getting nice donations from Hallmark, which has been nice. We've had that, and it's really been meaningful. One young gal in her 30s had been diagnosed and had written a wedding card to her sister; she just wanted to have that for her sister in case she passed. Well, the best part of that story is that, guess what? She was still alive. I know you've experienced this, Lillie, where they feel like, "Well, if I write those cards, am I hastening my own death?" And it's not. They may be there to give that person their card.

Ms. Shockney: I have cards for my grandchildren. I hope I'm here, right? But I could be hit by a truck. I've traveled the cancer diagnosis treatment road several times now. My granddaughter just turned 14 earlier this month, and it was a joy to put that card in her hand that I had written quite some time ago. It's a way to have control, isn't it? I like control. These women are in a land of having no control. So, whatever we can do to give them control, this is one of those ways. It's such an easy thing to do. The simplicity of a card and the impact it can have because of the words that woman writes in it is amazing.

Ms. Metsker: One other point on cards and letters, I have a good friend who was 11 years old when their mother died many, many years ago, back in the '50s. One day when I was talking to her, she started crying—I mean, she's 65 now—and she started crying and she said, "I'm still looking for the letter." The point of this is that it's helping people leave that legacy.

Let me just tell you a a little bit about how that started here, because I think it's important. So, Miss Lillie had presented about these retreats at a couple of different conferences I had been to and had some videos and things. There's not a dry eye obviously when she shows the videos of people talking about their experience at the retreats. I had taken that all in. Here at our center at St. Luke's, we have our oncologist, Dr. Timothy Pluard. He had a vision for many, many years to have a center dedicated to just metastatic breast cancer, since it's really another subset of breast cancer treatment in and of itself—even more so today, Keira, as we're preparing for this breast cancer symposium, because of all of the advances in the last five years. I mean, imagine, Lillie, from when you started the retreats until now, how many more options there are for people? Yet there's still not a cure, but it has become more of a long-term, chronic condition.

Ms. Shockney: For 70%, it will be a chronic illness, and they can live a decade or two with treatments like CDK4/6 inhibitors that have just turned the current treatment world around on such a paradigm shift.

Ms. Metsker: The treatments for human epidermal growth factor receptor (HER2)–positive disease are now being extrapolated even into patients with HER2-low disease. There are a lot of things that are happening just in the last six months. That's a wonderful blessing, but it can also be an opportunity for patients to want to put that off and not believe this diagnosis can still result in their death, sooner than it would've been. It's such an important thing that we're doing with this.

Anyway, to make a long story short, Dr. Pluard started this center in 2016. Right when it started was exactly the time that the notebook came out with Lillie's content put into a wonderful retreat kit, if you will, with a lot of the resources. She just put it all together and provided it to us. Dr. Pluard called me into his office and said, "I have something for you." He was already saying, when he started the Koontz Center for Advanced Breast Cancer, that we need to do these retreats. I'd seen these and told him about them probably a couple years even before. He had the notebook that been brought to him by someone, and he had handed it to me. He said, "Here it is, I want you to do this." And I said, "Plan it?" He said, "Yes, a thousand times, yes." So, that began the process, and it took really a full year to plan the first one even with that, because the most important part is getting the place.

Ms. Shockney: Mm-hmm, got to have the right setting.

Ms. Metsker: I totally agree. I looked around, visited a few places, and ended up with the best place. It's called Circle S Ranch in Lawrence, Kansas. It's just far enough away from Kansas City area that people have to drive about an hour. They can't say, "Oh, I've got to get to my kid's soccer game." The expectation is that you come and you're staying for the weekend, from Friday night until Sunday. I'm very passionate about that timeline, Lillie. I know sometimes people try to shortcut it and say, "Well, we'll do a one-day thing," because of the resources for this as providers. Somebody said to me at the beginning of our administration, "Now, this isn't going to use very many resources, is it?" And I said, "Oh, yes, it is going to use a lot of resources."

It's not just the financial resources, because we've been so wonderfully blessed by the National Breast Cancer Foundation (NBCF) to help us with these retreats through the grants that they provide. But it's people resources, building that team. We have a multidisciplinary team that we work with. So, I started planning the retreats. The long and the short is, that following fall of 2017, we were able to have our first couples' retreat. Then the next year, we started doing the two. We just did our couples retreat this past August. November 4th, 5th, and 6th is our singles retreat, where they come with a caregiver. It's really a very different dynamic. I know this was something I've heard Lillie speak about, how the experience with the couples and the caregivers is so very, very different.

Ms. Shockney: Yes, one of the things that is very different between the couples coming and the singles coming with a caregiver, is the husband and wife are very honest with one another. I frankly think it ties back to their marriage vows. Whereas, with the single patient who's bringing her mother, her sister, her daughter, or maybe her best friend, whoever is that's the primary person taking care of her, she's not always as honest. When questioned, she'll say, "I've been such a burden already to my sister or to my daughter, to my mother. I went to my last appointment alone because I knew I was going to get bad news. I'll decide when I want to share that news, and I'm not ready to share it yet." That's not good, because you don't want the person who's trying to take care of you to be in the dark about what's going on or to be shocked later. We need them to commit to one another.

I actually have them write a letter to one another at the retreat, saying that they will always be honest, that they will always commit to one another to be honest, and that trying to protect her is not a good idea. Stop looking at yourself as a burden. What are the things that your loved one, who's come with you, says are the pearls that have come out of going on this journey with you? There are some good things that have happened, so let's focus on them. The other is honesty from their provider. Not all physicians are comfortable giving bad news. If they're not comfortable giving bad news and they don't do it well, I'm not sure they should be taking care of stage IV breast cancer patients. Maybe they should specialize in earlier-stage because you've got to be able to give bad news, and you can't fluff it up and flower it. I mean, I don't want you to look like the angel of death, but honesty has been proven through clinical research to be the number one thing that a patient expects from their doctor. Honesty.

We had a gal attend our retreat where she brought her mother with her. Her mother was in a wheelchair. So, you've got a 30-something-year-old with stage IV breast cancer, triple-negative. She had a three-year-old, and her mother's in a wheelchair with multiple sclerosis (MS). They're trying to take care of one another. But the patient had a three-year-old daughter and no husband, no siblings. She was getting treatment in Virginia. She said that she had asked her doctor at her last visit, which was just a few days prior to the retreat, "How many more treatment options do I have left? I'm on my seventh line of therapy," which is a lot. She said, "With my last treatment, I only got through three months when you had to switch me to this new treatment." Her doctor said back to her, "We don't have to talk about that today," and she went, "Oh, okay."

I said, "But you wanted to talk about it?" She said, "Yes. My mother can't raise my three-year-old. I've got to find someone I can trust to be a guardian or adopt my three-year-old daughter." I said, "So, Monday, you're going to call his office and you're going to say, 'I'm going to see you this week and we're going to pick up where we left off because I have to know, I need a timeline.'" She saw him on Monday, and she called me on Tuesday crying. She said, "He told me this is my last treatment." I thought that was horrific. It was because he wasn't comfortable talking about it. She was ready to talk about it. She needed to talk about it. Well, the matter was that he didn't even know she had a three-year-old. I thought, "Where did patient-centered care go? Why doesn't he know you have a three-year-old and a mother with MS?" We need providers to be honest. When somebody asks you for a timeline, none of us are God, but you've got a pretty good idea. You really do. You can give a window because they need time to plan; they need time to get their affairs in order.

There are nine elements needed to experience a good and peaceful death. You need to know your purpose for living and that it was valued by at least one other person. You need to leave a legacy unrelated to leaving money for something. It isn't like you need to leave money for your name to be on a building. It could be a philosophy. One of my legacies will be these retreats, for example. There's giving forgiveness and receiving forgiveness—which doesn't mean you forgive everybody that you feel has done you wrong, but you need to think about it, and you need to have a discussion about it. There's having all legal and financial affairs in order; less than half of people with metastatic breast cancer have done that before they die. Let me tell you, it's a nightmare for the family if those things aren't in place, and the doctor doesn't know, because he never sees the family again.

There's leaving no financial debt for your family associated with your cancer treatment. We do that very poorly in the United States. Drugs and copays are horrifically expensive. Adult children will say, "Mom, don't worry about it. My brother and I will take care of it." Did she ask her brother? No. Now, the mother dies, and she says, "Oh, by the way, you and I are going to take care of whatever bills are left." He says, "I didn't agree to that." Then the daughter says, "By the way, since you make twice as much money as I do, I'm going to prorate this, so I'll pay a third and you pay the other two-thirds," and now they aren't speaking again. There's being pain-free, which is doable with effective palliative care, very effective. There's feeling connected spiritually to a higher power, which for some may not happen until the last hour. Finally, there's feeling confident you'll be spoken of fondly after you're gone. That's really important to people. They know you're going to say nice things about them while they're here. They want to know what you're going to say after they're gone.

So, I review all of those nine things now with them and give it to them as a printout and say, "This is your homework. I have completed my nine, so I know I'm in control. I want you to complete your nine. I want your husband to complete his nine. I want your caregiver to complete her nine. You don't have to be actively dying in order to do this. You really should have it done way ahead of time." It's a wonderful conversation to have with people. I mean, it really is. It's so thoughtful and really makes you think about your relationships, what's important to you and what isn't. It's what we should be doing for these folks.

So, Janie, what do you do on Saturday night with the couples?

Ms. Metsker: When we started the retreats and we took the kit—I joke, "Add water and a retreat pops out," well, that didn't happen, I tried it and it didn't happen—it's a lot of work. But we really followed the retreat curriculum, and we tried to do that out of the gate so that we were really looking at the way they should be done. We ended up doing some research with that. I asked Lillie, "Have you actually done formal research?" And she said, "No, so do it." So, we did, and I want to come back to the research findings because it was a very wonderful retreat design. But we started following the curriculum, and we have a multidisciplinary team that does our retreats—myself, and then we have had other nurses plan. I'm trying always trying to get others to come in and have them catch this vision, so that just because somebody leaves an organization or is gone or retires or dies or something, these things can go on—again, legacy. I think this is also part of my legacy, the things we've done here and the way we've implemented these. I think we were the first ones to implement these after the kits came out.

Ms. Shockney: Right.

Ms. Metsker: One of the things we start with is on Friday night, we do a session on the power of story. Then on Saturday, we have our psychologists who work with our oncology patients. They're there, as well as myself. We've had a chaplain who's helped with that, and social workers and others. We also divide them out into the two. The patients separate from the caregivers or spouses. The work that they do is just amazing, as they bring up all the topics related to the fear and what they're dealing with. Just at one of our recent retreats, a husband in the spouse's group said, "I'm about ready to implode. I have put my whole career on hold, I'm not advancing in my career because of the cancer." He had never even talked to her about this. These things that come up can be really heavy.

You go through the morning, and then we have lunch, and then after lunch there's a time where they come back together to discuss these things. A lot of what comes up is about end of life. That's a big one. There can be other things with kids and the dynamics that are happening in the family. The list is endless. Sexuality came out at our last one with the couples, where the women were bringing up sexuality. Our nurse clinician, Dr. Pluard's nurse, was there with that group. They came up with a signal—Lillie, you're going to love this—they came up with a signal, because the doctors are willing to talk about this. Our doctors are very willing, but the patient has to bring it up, and you see these patients weekly or monthly or sometimes more than once a week. The cue is that if the doctor wants the nurse to bring it up, they give her a little wink-wink. Those are things that come out at our retreats.

But the thing is, once you're done with that, it's heavy. The Saturday content and the things that they're bringing up, while it's freeing and all that, can be difficult, and it's emotional. There are all kinds of things with that. So, then they have massages, and we have a wonderful gal who comes and does restorative yoga. It's just so relaxing. Then you do the evening activities. Well, I had been involved with a group in Nashville several years ago, a young survivors retreat—not metastatic, but it was fantastic. They had had me come and be their nurse, and that's how this idea came about for a special event where they can dress up.

Literally, it was one of those things that came to my mind at 2:00 AM—you know how this is, you sit straight up in bed and you're like, "I've got it." A Beyond the "C" prom. It's beyond the C, the cancer C, the big C. We don't just do it for the couples, we do it for the singles, too. I tell them, "You can dress up as much as you want, and there's no such thing as too dressy. I don't care if you come in your jogging pants, but you can wear a cocktail dress. You can wear the dress you have in the back of the closet that you wore at your daughter's wedding. This is the time to pull it out and wear it again." To be at the retreats, they have to be well enough to be there, and so they really get dressed up. It's a wonderful time. I will tell you, more than once it has happened that it was really the last good picture, and they looked healthy. We have some fun with it.

Our whole theme is the sea. We have an ocean theme. It's very beautiful. There are just all kinds of things to it. When we started the first one, I had a gal, who was one of our cardiologist's wife, and she took on the task of designing all of the decorations for us. I said, "I budgeted the money for it in the retreat budget." It's stuff that will last that we can use over and over. It's just really beautiful the way they do it. Then we have a wall where we have a fishnet and all this stuff, and then they have funny little props that they can do. We do some serious and some fun pictures. I have been asked for those pictures from those retreats for funerals many, many times, and I provide them to them.

Then we also have a photographer who comes every time and videotapes and does a whole videography session with them. We do that at every retreat. It's something that's so worth the money. I would love to share one of those sometimes with folks, because Beyond the C retreat is so much fun. I'll tell you, when it's with the couples, it's the one moment in particular. Sometimes these are really emotional for us as caregivers. But, man, I'll tell you, when I'm standing there and watching the couples dance, knowing what's at stake, and many of them have been so focused on the cancer for so long that they haven't had any fun, and you see them connecting. I have them send me their special song, so we play that, and they get out there and they dance, and you just can't help but stand there and let the tears roll, because it's just so sweet and so special.

Then we do the singles. Well, it's a lot of work sometimes to get them out there dancing. I have them send me their songs too, and they're more reluctant. I don't say, "your special songs," just songs they like." There are various ones, sometimes they send, like, Amazing Grace, and that's great. We play that during dinner—we have a special dinner that night—but that's not exactly dance music. The very first time that we had the singles, two or three of the girls came together to me and said, "We're really concerned about this prom thing, who are we going to dance with?" And I said, "Well, you know what? I don't need a man to dance with me. I don't follow anyway. So, no worries, we're here to have fun." I was trying to engage them and get them out floor, and they were all so reluctant and said, "No, no, no." But once I got them started, I couldn't get them stopped.

Ms. Shockney: That's great.

Ms. Metsker: Then they gave me their songs, so I added them to the playlist, and we were pulling them up and playing them. And oh my gosh, they had so, so much fun. It just brings that mood up after that heavy day, and they connect with one another as well. It's really special. Then afterwards, after the dancing and the dinner, we do the "almost newlywed" game and something different for the singles. We've done various versions of that where it's what we call the "friendship" game. I know you've done some other things with that. It's a really special time that lightens the mood and helps them have fun too.

Watch the second part of Ms. Shockney and Ms. Metsker's conversation here!