Episode 5: 84,000 Hours

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. If you're walking into a cancer hospital for the first time, there's a good chance you aren't having the best day of your life. For many first time visitors to Fox Chase Cancer Center, fear and uncertainty are the dominant emotions, and understandably so.

Judy Bernstein: Sometimes when we're walking to the office visit, the patient will just cry. And that's actually really good, because it allows that patient to vent with me so that when the patient does see the doctor, he or she is prepared to listen better than had they not vented. They're scared. Of course they're scared. Scared to death. I can see it in their face.

Andrew Becker:   Enter Judy.

Judy Bernstein:  We always have a new patient escorted to the doctor's visit. And sometimes I'll say to them, "I know your doctor. You have one of our stars." [inaudible 00:01:08] designated as a national cancer institute. We have access to the newest and best clinical trials. Our nurses have achieved Magnet Nursing Status five times in a row. This is your time. We don't schedule little teeny blips of appointment time. Ask us. And then I tell them about the medical record number, where they can find it on their wristband. And we have free parking. I mean, I tell them a lot of things.

Andrew Becker: Judy is an institution at Fox Chase. She volunteers every Monday and Friday greeting brand new patients, helping them find their way around the center and giving them hope in a moment of anxiety. Every Wednesday she visits people in their hospital rooms providing para-chaplain services. For a number of reasons, Judy might just be the best person on the planet to have greet you when you arrive here. She's personable and funny, and empathetic, and knowledgeable. And Oh, by the way, she survived eight primary cancers.

Judy B.:  I have skin cancer, squamous cell skin cancer. I have so many sites that I stopped counting when I had 45 incisions. I actually have two types of lymphoma. I had what I thought was a stye on my upper eyelid. I should have known I wasn't going to get something as easy as the stye. It wasn't. It was lymphoma. So that's skin cancer, lymphoma, lymphoma, lung cancer. I actually had two different types of lung cancer in the same lobe. It was in the right upper lobe. So they did a lobectomy. They took out the right upper lobe. But they count that as two cancers, because they were two cancers. And then I had a thyroidectomy in the left side. I had the breast cancer on the right side. It was just a lumpectomy. I didn't need radiation for that. And then I had an esophageal issue where they did a resection. It's a lot.

Andrew Becker: 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. This is Connected By Cancer, the podcast of Fox Chase Cancer Center that's all about that search. I'm Andrew Becker. And each episode we explore these connections together. Today we're going to meet a couple of people who care for patients in unique ways. They're not doctors or nurses, but they do spend their time trying to make patients feel better.

Andrew Becker: They're volunteers, and there's more than 500 of them. Collectively they contribute tens of thousands of hours to the center each year to help in many different ways from staffing the suite where family members wait for patients in surgery, to working in the gift shop. Even working in some of our labs. Volunteers choose to serve here for a lot of different reasons, which brings us back to Judy Bernstein who greeted us at the beginning of the episode.

Judy Bernstein: Please don't end.

Andrew Becker:  Although her laugh is a force of nature, her story is serious.

Judy Bernstein:  My first serious cancer diagnosis was January 2nd, 2001. Lymphoma. Marginal thing. At that point I was, "Thank God you can tell me what's wrong with me." I taught second grade. And so I kept getting bronchitis and colds, slowing glands. And I went to doctor after doctor, after doctor. And there were lymph node excisions all over my body. There were nuclear medicine scans. They kept doing one thing after another. Quote, "Maybe one day you'll be diagnosed with lymphoma." And I would say, "I'm sorry, I need to know what I have. There's something seriously wrong with me." Well, it took years for me to realize, and have an actual epiphany that, "What's wrong with you? Judith Bernstein, you taught the children of a hematologist. Go to that doctor."

Judy Bernstein.:  So I called and got an appointment. I called New Year's Eve day, and got an appointment January 2nd. And he told me that I had marginal zone P cell lymphoma, and that a simple blood tests would definitively diagnose it. Not any more cutting out parts of me. I said to him ... So after I gave my medical history, I said to him, "So what do you think? Do I have lymphoma?" And he said, "I would be surprised if you don't." You didn't forget that. You didn't forget that. It was life changing, with an emphasis on the word, "Life." When I was in kindergarten and I was sitting right at the piano, I always sat close to the teacher. I loved sitting close to the teacher. I knew then and there that I was going to be a teacher. I knew that I wanted to live a life where I could help people. I knew that I wanted to be able to reach out and make somebody else feel as I do, that life is good, and life is wonderful. And you want to be able to stay alive. "Staying alive, staying alive."

Judy Bernstein: It was very hard to give up teaching. But then I looked at my daughter, and our daughter and I said to myself, "I'm upset that I can't teach anymore. She's upset that I'm going to die. Get your priorities in order, Judy. Know what's important." And my daughter, our daughter and our grandsons were the priority. That flipped a switch in my head. And at that point it was, "I'm going to live with cancer." I always say I live with cancers. I do not fight cancer. I live with it. This is just my opinion. Everybody's different. But my opinion is, if you go into something that you have to fight, and you can lose. I don't want to lose.

Judy Bernstein: Oh, yeah. I remember the first time I was diagnosed. I was trying to get a diagnosis. And I went to a different facility. And the person that walked me to my appointments said to me, "Oh, it's so nice to meet you." And I said to myself, "Oh, no. It's not. I'd rather meet you at a restaurant." So a lot of times when I introduce myself to a patient, I say, "My name is Judy. I'm happy to see you. But I would be happier if I met you at a restaurant or a movie. I see you're worried. May I tell you that I've been a patient here for 20 years? I don't look sick. The doctors here are fabulous. You've come to the right place."

Judy Bernstein: I try to reassure them. That's a difficult thing to do. You don't know the baggage that everybody is carrying. That breaks the ice for them. It's so much more comforting to walk through a brightly lit hallway where you know what you're going to be experiencing, than a dark alley and you have no idea what's going to jump out at you. Surprises aren't good. I know that people feel better about going to see their doctor after I've walked them to their appointment, because they tell me later. And they don't always tell me that same day, but when I will see them at a later time, they remember me. And they remember my making them feel so much more comfortable.

Andrew Becker:  We'll be right back.

Speaker 1: Cancer advice from someone who knows.

Tijuana Smith:  I'm Tijuana Smith, breast cancer survivor. As a patient, you want to know that you're a top priority, especially when you're diagnosed with cancer. At Fox Chase, they have a plan for you. My oncologist was there, my surgeon was there, my radiation oncologist was there, the nurses and the therapists were there. That to me is 360 degree care. And that made a difference for me.

Speaker 1:   Where you start matters. Fox chase Cancer Center, 888-369-2427.

Andrew Becker:  This is Connected By Cancer. I'm Andrew Becker.

Marsha:  Hi.

Andrew Becker:   Hello there.

Marsha:   Hello there. Hi again. My name is Marsha. I'm a volunteer.

Andrew Becker: Meet Marsha Covitz.

Marsha:  Everything on the cart is free.

Andrew Becker:  One of the three volunteers who staff the Friends Cart.

Marsha: I have all kinds of good stuff.

Andrew Becker: Back before e-readers and smartphones, the Friends Cart was a mobile library. Three feet high and four feet long, it was wheeled from waiting room to waiting room all over the hospital to help patients and their families pass the time. But times have changed.

Marsha:  I've got magazines, I have puzzle books, reading glasses, neck pillows, blankets, hats, shawls, playing cards.

Andrew Becker: There's still a few books along with-

Marsha:  crayons-

Andrew Becker:  ... crossword puzzles, reading glasses-

Marsha: ... markers.

Andrew Becker: ... and the bestseller.

Marsha:  Candy's my best seller, although I don't charge for anything.

Andrew Becker: But the most important thing the cart delivers human connection. Thank you very much.

Marsha:  There you go. About 27 years ago my dad was diagnosed with non-small cell lung cancer, fairly advanced. Lived out of state and Rhode Island. They started him with traditional treatment, which was surgery. That took out a lobe and half of one lung. And then they did radiation. They decided not to do chemo. And he was okay for a while. And then all of a sudden it popped back up and came with a vengeance, really bad. And they kind of said, "We don't think there's anything we can do." So I was on the train going into Center City every day, and I sat with the same group of three women when I was working in town. And one of them was the head medical librarian at Hahnemann Medical School. And she said a profanity and said, "No, not going to give up. I have a friend at Fox Chase, they do clinical trials all the time. Let me call him."

Marsha: She called him, and my father was a perfect candidate for a clinical trial. We came here. He came from Rhode Island with my mom and my sister and we met with a physician here. He was a World War II vet. He had two Purple Hearts. He was afraid of getting enough pain relief, but he was very brave. The first time he came for treatment here, I remember the room he was in on the third floor. And he came the night before, and they told us, the doctor told us, "This is going to be difficult." They had to put two lines on each side of his neck, and two lines in his arm. So he was going to have four lines going. And to get them into your neck I assume is fairly tricky.

Marsha: So the phlebotomist was a young woman, and she came in. And he looked at her, he said, "You've got one shot. You've got one shot." And she said, "No problem." One, two, three, four, done. And I could see him relax. But the best thing was, every time he came from that day forward, and he came a lot, the same phlebotomist was assigned to him. Which I thought was brilliant. And he'd see her and he would just relax. And he knew, "Okay, she was going to get it." No pain, as the least amount of pain as possible. And then done. My kids were young, then teens. When then they would come after school. I would rush up from work, from Center City. Visiting hours were over at 8:00. I would take the train and zoom over here, go to the cafe, grab the sandwich, and then run so I can eat my dinner with him. Because they would keep him for a few days after the chemo. And then he'd come to my house and recover a little bit, just kind of get his bearings, and then fly back to Rhode Island. And it was a routine. And I remember sitting there and watching the drip, drip, drip, and thinking of, "Let's hope this works." And it did work.

Marsha: It usually doesn't do that. That's new. I don't know how to fix that, but maybe some WD 40 somewhere. So he came here every three weeks for a number of months, and did in-patient therapy. Did really well. And lived I'd say three, two and a half or three years with very good quality of life. No pain, no side effects that were not manageable. And died of a heart attack. Very quiet and without pain. Too young, 71. But it was a good death for him. About a year after. They don't like you to volunteer until about a year after your loved one has died. So I came here, I was working full-time then. And I came here and volunteered at night to help the ward secretary on the third floor in the patient building. And I ended up doing that for a few months, but I found that it too soon and too difficult.

Marsha:  I was where he was. And one night I was here and a patient came in an emergency admission with his daughter. He was about my dad's age. And I went and got him a heated blanket, and got him all settled in. But that was too hard. It was too hard. So I volunteered at other hospitals doing other things, but not here. So then about three years ago, three and a half years ago, I decided it was time to try to come back here again. And they gave me the cart, and I love it. So that's why I come. It's the best. If I don't come ... In the fall, I had bronchitis for a few months. And you can't come in obviously when you're ill. I was so out of sorts that my husband said, "You've got to get well soon, because you're being unbearable."

Marsha:  And I knew, because when I do this, it's like getting, I don't know, vitamin B12 shot or something. It makes me feel great. And I talk about this a lot. A lot of people don't get it. They say, "How can you go and see all these people who are sick, and not feel horrible?" I said, "But my job is to make them feel better, and to just bring them a little distraction in a given day. And it makes them feel better." I've had tons of positive reactions, had relationships. If you come on the same day at the same time, you'll see the same people in radiation. You'll see the same people in chemo. Hi, my name is Marsha. I'm a volunteer. I think I saw your last week in the exact same chair. I'll just make the same offer I made last week, candy? So it's like, "Okay, I'm here and I'm not going to stick them with a needle, and I'm not going to make them ill. I'm going to hopefully give them some little something." So it's good. Everything on the cart is free. Everything.

Helen Gordon: Last year we had 542 volunteers. They did devote about 84,000 hours. That's a metric that's easy for us to say and figure out. But there's no way to put a metric to how they make a person feel when they're helping them when they're here at the Cancer Center.

Andrew Becker: That's Helen Gordon, director of volunteer services at Fox Chase. I sat down with her to talk about all the ways that people like Judy, Marcia and the hundreds of other volunteers make a difference here.

Helen Gordon: I am like an air traffic controller, but for people. So lots of community members come to volunteer. They want to share their talents here at Fox Chase. Some are in the hospital, some are with our scientists. So we have a lot of graduate students, visiting scientists, people working on their PhDs. It's a wonderful job, because I get to see the best of people. They come here to help our patients. Many of our adult volunteers are survivors, and so they really know how to be empathetic. They are always there for the patients. They graciously give of their time. They're very selfless. They will sign up for extra assignments. They'll do things, and sometimes I ask them to do things that seem impossible, and yet they do it. And they do it lovingly.

Andrew Becker: What are some of the jobs that volunteers do here?

Helen Gordon: We have volunteers within the hospital that are greeting patients. Consider yourself a new patient and you enter a facility where you don't know where you're going, you're terrified, you have a new diagnosis. And someone asks if they can walk you to your destination. That just relieves a lot of anxiety of trying to figure out where you need to go. We have other volunteers that are in the community making handmade items. And then those items are brought here, like neck rolls and blankets. And then they're presented other volunteers who are trained to be with patients as gifts. They go around with a cart, they offer lots of comfort items, books and ChapStick, and reading glasses. Anything to make a patient's time here a little more comfortable. We also have volunteers that are incredibly devoted in the family surgical waiting suite. I have four shifts of volunteers in there per day. And those volunteers are the liaisons between the surgical team and the families who are waiting for a patient that's in surgery. It's a high anxiety area. The volunteers have to interact with surgeons, the surgical team with the family members. And they do a fabulous job.

Andrew Becker: So let's talk about the different sorts of talents and skills that volunteers bring to bear for the patients.

Helen Gordon: That's a great question. So even beyond volunteering with patients directly, we have a lot of volunteers that are here through our Patient And Family Advisory Council. Those volunteers are intimately involved in the workings of the hospital. Making sure that the patients voices' heard. A lot of those folks on that committee have been volunteers in the hospital, but not all of them. And as part of their role in the advisory council, they also sit on other committees like our Patient Safety Committee or our Patient Experience Committee. And they make sure the voice of the patient is being heard. I also have one particular volunteer who doesn't stay here at the hospital, but she takes a lot of time during the year gathering up very good book donations. And a couple of times a year, she actually drives them here.

Helen Gordon: It takes her about an hour and a half. She fills her large truck with these beautiful book donations and brings them here to the center. And then other volunteers distribute them throughout so that folks always have something to read while they're here. She donates roughly 4000 books a year. That's a great project.

Andrew Becker: Can you give us a dog story?

Helen Gordon: Okay. One of our pet visitors ... We have several, and sometimes more than one per day. One in particular, Rocky who's getting a little bit aged right now. And he hasn't been in a lot. But one particular day he came in to volunteer. And he was in visiting with us in the office, left the office to go see patients. And as he left our office, a patient was coming down the hallway and she fell to her knees. And she put her arms around Rocky, and she started crying. She was on her way to radiology for a test. And this interaction, she said after she got up, after she hugged him and loved him. And he's having a great time getting all this attention.

Helen Gordon: She was like, "That's all I needed to continue my day and go to my service." And so off she went down the rest of the hallway, leaving the rest of us in tears. But our pet visitors just like babies and pets always steal the show. They do steal the show a lot and they are well loved by many of our patients and colleagues alike. They really provide stress relief all of them. Some of those pets come in and immediately give you your belly. Some of them are full of energy and just bring that energy to the area. And we have one or two that come in per day. So we're very fortunate to have a good group of owners who are willing to go through that whole process, train the pets, and bring them every week to visit our patients.

Andrew Becker: What are the requirements for a human volunteer who wants to donate their services?

Helen Gordon: So it is a little more complicated now. In years past, you could walk in and say, "Hey, I want to help out," and we would put people to work. Being a hospital, we have a lot of regulations we must follow. So we ask volunteers to fill out an application. We get two good references. And once we receive those, we invite you to a monthly orientation. And during orientation, we talk about what it's like to be a volunteer, what things you need to know for your safety and for patient safety while you're here. We also talk to people about what it's like to be in a cancer center, and how you might interact with patients, especially if you haven't had that experience before. And then after that, if you do not have an assignment already, some people come to me that have already talked to a scientist. And so I'm onboarding them without that interview.

Helen Gordon: But for those who want to volunteer in the hospital, I interview each one individually. And we talk about what that person wants to get out of volunteering, what they have to offer, what their availability is. And then we try to match that up with an assignment that is open. And then we schedule a start date. Volunteer applicants do have to complete HIPAA certification. They have to provide medical documentation, all their immunizations, including a two step TB test. We do run criminal background checks on everyone. So it is somewhat of a lengthy process, can take four to six weeks. But then we get them started and they're really happy that they made it through that, and it's all worthwhile

Andrew Becker:  Other than the actual service that volunteers bring to the job, is there something to the fact that we're essentially presenting longtime survivors as volunteers. And so that our new patients get a chance to interact with people who've been through it before?

Helen Gordon:  We absolutely are. You've already talked to Judy Bernstein. She's a great example of somebody who tells everyone that she's living with cancer. She still has her challenges, but she's willing to share those experiences with almost everybody that she meets. We also have many other volunteers who are going through a similar thing are still volunteering, going through their challenges. And they are sharing their stories, and it really does bring great hope to our patients

Andrew Becker:  Connected By Cancer is the podcast of Fox Chase Cancer Center. And it's produced and edited by Joel [Paterson 00:26:41] and me, with help from Jonathan [Feffer 00:26:42]. Thanks to Judy Bernstein, Marsha Covitz, and Helen Gordon for sharing their stories with us. Thanks also to Blue Dot Sessions who provided us with music and to Rock And 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. No physician-patient relationship is implied. I'm Andrew Becker. Let's stay connected.