Episode 1: The Sound of Success

Andrew Becker: Before we start. A quick note, the content of this episode should not be considered to be medical advice and no physician patient relationship is implied. It's a quiet morning at Fox Chase Cancer Center, four days before Christmas, except in one waiting room where a crowd has gathered. It feels a little like we've come upon a surprise party at the beginning. There are grandparents, 20-somethings, at least one baby. They're carrying posters, they're buzzing with anticipation. They're standing around in bunches of three or four and they're all waiting for one person. His name is Joey Sankey. He's 27-years old, a professional lacrosse coach and player and today is his last day of chemotherapy.

Joey Sankey: I'll never forget the first time I saw someone ring the bell. After I saw that one person do it, I kind of got the chills and got emotional seeing them do it.

Joey Sankey: I was looking forward to that day, on that Friday to ring the bell. My mom, my dad, all my brothers, they would always be like, "Yo, you have how many days? However many days, however many weeks till you ring the bell." And it kinda just became a thing.

Andrew Becker: This year, 1.7 million people will be diagnosed with cancer in the United States. Like Joey, some of them will end up here at Fox Chase Cancer Center in northeast Philadelphia. Everyday our waiting rooms, laboratories and clinics fill up with people searching for something to take care of others to find the next big breakthrough or maybe just to feel like themselves again.

Andrew Becker: This is Connected by Cancer, a new podcast from Fox Chase Cancer Center that's all about that search.

Andrew Becker: I'm Andrew Becker. In each episode we'll explore these connections together, but first let's get back to Joey.

Joey Sankey: It basically started in August when I started feeling a little discomfort. Luckily I didn't wait too long, but I probably waited a little longer than I should have, but I probably had the pain and discomfort in my testicle for about a month. Finally, I was like, "All right, something's not right." I was hoping it'd be one of those things that would just pass, but who knows what it would have been. But after a month I decided to go see my doctor, my primary physician, and he suggested that I go get an ultrasound. And so I got the ultrasound. He calls me the next day and tells me that there was an amass and I'll need to get it removed. He said it very nonchalantly. He's like, "Yeah, it's like getting your tonsils taken out and everything." So I'm like, "All right."

Joey Sankey: After I got the surgery and then after my first blood work that I did in the first month, it came back that I did still have cancer. And so then I would have to go through four rounds of chemo. I mentally tried to prepare myself for the worst and then if it ends up being better, great. But I really had no idea what to expect. My first day of Chemo was that Monday, October 15th and so it'd be a week on, two weeks off. I did four rounds of that. My treatment was Monday through Friday and it'd be about five hours each day. Monday, Tuesday, part of Wednesday I'd feel fine. I'd work out in the morning before I did my chemo and then the second half of the week is when I could really start to feel it hit me.

Joey Sankey: The metallic taste in my mouth honestly, was by far the worst part of everything, which doesn't, going into it, I kind of brushed over that. But that was surprisingly probably the worst thing that I had to deal with. And there's just no getting rid of it. Then the nausea would hit later in the week as well. The best way I can explain it is when you're feeling good, life is in color, everything's great. And then when you're going through chemo or something, life just seems like it's in black and white, just cloudy. I would walk in, it would be the same thing every day. We had a good routine. I would walk in as I was getting weighed and blood pressure, temperature, everything. My mom would go right to the chair and she would set up all... I think she took like six blankets with her. She would cover the whole chair and get set up. Get my ginger ale. She would get my water. She would get everything situated.

Joey Sankey: My dad would let my mom do her thing and then once I got settled in, my dad would come in and they would both just sit there with me the whole time, but I can't tell you enough how appreciative I was that my parents were there every single day. Both of my brothers visited me a few times throughout it. I kinda told them, stay at work. Don't feel like you need to visit, because I didn't really want many visitors. The biggest thing was me trying to get my parents and specifically my mom to start acting like their normal selves. When the first two or three weeks throughout the whole process, my mom was kind of a wreck, just so emotional, so sad. You could see it on her face.

Joey Sankey: She's a very happy person, but you could see that this was killing her. And finally I'm like, "Mom, you need to like, I'm fine. You need to get over this." And she finally after probably a week of chemo she was back to her normal self. Throughout the process I'd be sitting in there and my mom and dad would be bickering about something so stupid. That's when I knew, I'm like, "All right. Everything's back to normal." And so that's just how they interact all the time. We're a big lacrosse family. We played every sport imaginable growing up, but we kind of got stuck on lacrosse.

Eric Horwitz: Take it away. Here's Sankey. And with that goal he ties. New York is holding for the most points in the history of lacrosse.

Joey Sankey: Almost every one of my friends that I've made, it's through lacrosse. The schools that I've been able to go to is because of lacrosse. I owe lacrosse everything. And I don't know if that sounds sad or not, but it's just the truth. It's my life.

Joey Sankey: On top of the chemo was, I had two knee surgeries before I started chemo over the past year. So this summer when I play again, it will be two years since I played in the game itself. I tell everyone, "I hope I remember how to play." I'm definitely very nervous, but I'm lucky that I've played at the highest level and have met so many great people and the outreach and the support that I received was overwhelming. The amount of texts and emails and calls that I got from the lacrosse community, especially just it was tremendous to see how much they would help, how much they reached out to me.

Andrew Becker: While we wait for Joey to finish his final treatment, I'd like to introduce you to Alan Zlatkin.

Alan Zlatkin: Chemotherapy and frankly the cancer experience is like trying to tell a stranger about rock and roll. You can't do it.

Andrew Becker: He's a long retired IRS worker. He's a father and grandfather and a former athlete and he remembers waking up one night a couple of years ago with a sharp pain in his back and a premonition.

Alan Zlatkin:  An intuition or a premonition, I'm not sure which is the right word. One night in the middle of the night when I was both uncomfortable and in pain, that it was cancer. And I decided as did my wife, that we would approach this two ways. One positively, I would keep anxious thoughts out of my mind. And secondly, stoically and fortunately we were able to do that. When we got the diagnosis, we took the approach you've heard I'm sure before and that is okay, what do we do now to overcome it?

Andrew Becker: He's been successfully treated for pancreatic cancer, which for him meant chemotherapy, radiation and then more chemotherapy stretching out over a year. But when he finished his treatment, he wasn't sure the bell fit into his plans.

Alan Zlatkin: I wasn't going to do it cause I'm, this may sound strange, but I can be real shy and private. I rang the bell for radiation in there. That was kind of like, it was all right, but I wasn't going to do anything because there's a whole bunch of people out there and I thought, "Nah, I don't want to make a fool of myself." The nurse that I had, I made the mistake of saying, "Today's my last treatment." She said, "Oh, we gotta celebrate." She starts screaming "Everybody, oh, it's his last treatment." I said, "Listen, I really would like to play this low key." She said, "Oh well we're going to celebrate. You're going out and ringing the bell." And she brought this big billboard."Al sir, you survived chemotherapy sir." Whatever. And I thought, "Oh my God." I'm mortified. You know?

Alan Zlatkin:  And she made me go out and I rang the bell and they took pictures and things on my phone and everybody applauded and people shook my hand. And it was like such a fitting conclusion to going through one of the toughest physical times in my life that I thought, "The girl knew what she was talking about. I'll never forget the experience. I had to coin phrases for myself and repeat them every day. The phrase I came up for myself was, “diminished but never defeated.” That's how I've lived these last two years. I certainly was diminished as a lot of cancer patients are. My weight dropped from 182 to 140 before I began to rebound. And I had many side effects. I had incredible bouts of diarrhea. I had neuropathy. Yeah.

Alan Zlatkin:  I'm not fond of the word. Frankly. Ulcers inside the mouth made it difficult to eat or drink. You had to use a salt solution. I developed infections in places I'd really not care to tell you about. It was just a kind of an awful experience in the context that you know nothing, like I said before, there's no way to tell what it's like until you endure it. It's like the sword of Damocles. It's always hanging over your head by a thread, but you just can't look up. You've got to look forward so we do. The best thing that you can hear is the sound of the bell. There's nothing as uplifting as that sound even more so than the bell that rings for the Philly home runs.

Andrew Becker: As we talk to patients and staffers about their experiences with the bell, we started to wonder how it became so important to this very serious process. It's almost mystical. And by the way, where did it come from? How did it even get here? Our search for answers led us to...

Marge Townsend: My name is Marge Townsend. I'm currently a volunteer in the infusion room. I was a nurse at Fox Chase for a total of 20 years. Three years I was here. I left, and as most of the nurses do, we come back.

Andrew Becker: Eight years ago while working as a nurse here, Marge had a frightening moment.

Marge Townsend:  I had had a mammogram and six weeks later I found a large cyst in my breast. Kathy Evers, Dr. Evers, she said, "We'll aspirate it." She said, "There's some debris, but I don't think it's going to be anything, but the guidelines we want to make sure." And here it was triple negative breast cancer that had never formed a tumor and that's why the mammogram was negative. So I immediately went to get one of my nursing friends and we ran over to see the breast surgeon and I ended up having chemotherapy for five months. Then I had a double mastectomy and this was over a period of about 10 months. I worked in phone triage during that time. Didn't have a hair in my head, and didn't really care. I feel as though Fox Chase saved my life, which my mother and her only sister both died of a triple negative breast cancer aggressive. Mine was discovered before it became a tumor. So eight years and here I am. Yes, a survivor.

Marge Townsend: When I finished my treatment, I knew I wanted to do something special because I had had so much support from the staff here and the doctors. I mean I was treated like real royalty and I don't believe it was because I was a staff member. I think in the infusion room everybody seems to be treated exactly the same as as I was. So I wanted to think of an idea for a gift, and I could make a donation. I'm not a millionaire. I would have, A wing in the hospital or something vague and I thought, "What can I do that's just not a check." So I came across the idea. I'm going to get a bell for the infusion room because when you walk between the hospital and the outpatient department, you can hear the bell ring down in radiation. You can hear everybody clap and the people walking by coming off the elevator will clap.

Marge Townsend: And I decided that I didn't want the bell to say in honor of me. I didn't want anybody, they didn't have to know who bought the bell. I wanted it and I thought, "What could I have it say?" And I thought, celebrate. Simple and now when they completely renovated the outpatient and all, I wasn't sure what would they do with the bell. Was it important? They put it up immediately. I was also told that there was someone who wanted to donate a bigger bell and was told, no, this has a lot of sentimental value. Although, I do realize the bell isn't for everyone. There are patients that don't want the attention. Maybe they're done their chemo, but their disease isn't real stable so they're never sure are they going to come back. But the bell makes that day important for them and makes them happy for that day. That's what it's about. So that's the story of the bell

Andrew Becker: For anyone who happens upon a bell ringing, the experience can be unforgettable. But for people who work in and around the infusion room, the bell is simply part of the soundtrack of their workday. I asked a long time. Fox Chase nurse, does hearing the bell ever get old?

Karen Lorek: No. That's why I love my job as an oncology nurse. I make a difference in everybody's life that I touch in that room every single day and to be with them and to share in the moment of them finishing their treatment is just overwhelming.

Andrew Becker: This is Karen Loreck. She's seen hundreds of patients ring the bell.

Karen Lorek: I've been a nurse for 20 years. I've been at fox chase for 17 of the 20 years. What really inspired me to get in to oncology, is my father passed away of cancer in the Harrisburg area and at that time I was in accounting. So I really didn't, accounting wasn't really my cup of tea. I did better with people. I decided after he passed away that I was going to go back to nursing school and then it led me into oncology and I fell in love with it here and never left.

Andrew Becker: So tell us about what your duties are as a nurse in the infusion room.

Karen Lorek: Administer chemotherapy to the patients and any other infusions that they might receive, like blood products or iron fluids, immunotherapy. But it goes, it's farther than that. It's bringing the patient in, sitting them down, assessing them, seeing how they're feeling, putting an IV line into them, taking a look at their blood counts, making sure that all their numbers are in parameters, calling their physician with any problems and then beginning their medications that they are supposed to receive that day. Then also, monitoring them for allergic reactions to the chemotherapies, which is a very serious thing. They are becoming more frequent and sometimes they're life threatening allergic reactions that they have. And that's it. Then at the end of the day when they're finished their infusion, taking out their IV and then just getting them ready to go home for that day, and then just be comfort to them while they're there.

Andrew Becker: Why are you the person everybody told me to talk to about the bell?

Karen Lorek: I'm really just very involved with it. It's the patients in general. Anything that can make them happy. I'm always for that, helping them with this, getting them a blanket and doing whatever. But the bell I think really makes a difference because it brings everyone together and it's happy for them. It's a happy time for someone and other people get to share and say that they're going to have that some day as well. The patients really make it a big deal now. They carry it on because they see another person ringing it while maybe they're waiting in the waiting room and then they're thinking, "Some day I'm going to ring that bell and I'm going to." It's like a sign of freedom that they don't have to come here anymore. But then other patients maybe sitting in the waiting room might know in their mind that they're never going to be done chemotherapy. That they have chemotherapy treatment for life.

Andrew Becker: Describe the bell.

Karen Lorek: So the bell is basically the size of a I'd say coffee cup and it hangs on the wall outside of our infusion room in the waiting area. So there's a string hanging on it and then they just ring it back and forth. It's like a ship's bell and it has a little plaque on it and it says, "Let's celebrate." Because it's a celebration of life and that they finished chemotherapy.

Andrew Becker: About how often do patients ring the bell?

Karen Lorek: Well, I'd say on any given day, three to four patients could ring the bell per a day. Since we are seeing sometimes 120, 150 patients a day, that's kind of a lot of patients. So I think in the beginning maybe we felt a little awkward or shy about encouraging patients to ring the bell, but the more now that it catches on and the more people that know about it, they want to ring the bell. Then it becomes a more popular thing. But a lot of nurses I think are sometimes shy and so I'm like the rallier in here that gets the patients. I'll be like, "Okay, come on, let's ring the bell."

Andrew Becker:  Is that something that people talk about frequently during their treatment?

Karen Lorek:  Absolutely. They'll even count down. Three more treatments till I ring that bell. And it puts life in perspective when you care for cancer patients that they don't take anything for granted and they don't sweat the small stuff in life and every little thing that they get to do is one more day of living for them. I feel that by them ringing the bell, that's just one more positive thing that they lived another day with cancer.

Andrew Becker: And that brings us back to where we started the waiting area outside the infusion room where at least a couple dozen of Joey Sankey's family and friends are waiting to surprise him.

Speaker 8:    Yes. Yeah. Listen, listen. Every time that door opens they are recording, so we'll be...

Joey Sankey: Friday, December 21st it was my last day of treatment for my four rounds of chemo to treat my testicular cancer. Obviously you're in your fourth round, you don't feel great, but I mean it's also your last day of Chemo. So I was pretty excited and probably should have felt worse than I felt, but just the excitement of knowing it was my last day was awesome. I was expecting like two or three people to wait in the lobby. Maybe my brothers or someone would be out there and then I walk out and I just see the whole lobby packed with friends and family and people who had jobs in New York that skipped a day of work to come to be there just for that. So it was a pretty special moment to cap off what was kind of a a rough few months.

Speaker 9:  Joey, hit it.

Joey Sankey: Thank you guys for coming. I appreciate it. I love you guys. Thank you so much. Hey, I might want to thank my parents who they were here every single day with me. All of you guys texting me throughout the past three months. Thank you.

Joey Sankey:  Now what?

Joey Sankey:  I got a little emotional at one point when I was just saying thank you to everyone. I couldn't really get many words out, but I think hopefully everyone knows how appreciative I was that they were there and they were supporting me throughout that journey.

Andrew Becker: Standing here watching Joey celebrate with his friends and family. I'm reminded that the bell isn't just for the patient who is ringing it. It's a tangible reminder of all we do every day to prevail over cancer. It is truly the sound of our success.

Speaker 10: By Jake Richard from behind.

Andrew Becker: And speaking of success.

Speaker 10:  A nice little shovel and they scored. Joey Sankey for the finish.

Andrew Becker:  On June 2nd less than six months after he rang the bell, Joey returned to the sport that he loved and scored his first competitive goal in more than two years.

Speaker 11:  We credit Joey Sankey for staying with this play.

Andrew Becker:  Helping his team, the Redwoods, to an 11 to nine victory in the inaugural weekend of the newly launched professional lacrosse league. I speak for everyone at Fox chase when I say we're thrilled that he's begun a new chapter.

Andrew Becker:  Connected by Cancer is the podcast at Fox Chase Cancer Center and it's produced and edited by Joel Patterson and made with help from Jonathan Pfeffer. Special thanks to Joey Sankey and his family for allowing us to crash their bell ringing party and to Alan Zlatkin, Marge Townsend, and Karen Lorek for sharing their stories with us.

Andrew Becker:  Thanks also to Blue Dot Sessions who provided us with music and to Rocket Summer productions. Subscribe to Connected by Cancer in apple podcasts, on foxchase.org, or wherever you listen. And remember, the content of this episode should not be considered to be medical advice and no physician patient relationship is implied.

Andrew Becker:  I'm Andrew Becker. Let's stay connected.