Transcription:
The "C" Word, Community not Cancer: Maria's Story

Scott Intro: Welcome to Conversations On Cancer, brought to you by the Riverside Cancer Institute; providing answers, debunking myths, and sharing patient stories.

Ahsan Basha, MD (Host): Welcome back to Conversations On Cancer brought to you by the Riverside Cancer Institute. I'm Dr. Ahsan Basha. I'm a Medical Oncologist and Hematologist at the Riverside Cancer Institute. Today's podcast is part of the C-word; community, not cancer. This series is to provide a sense of community and comfort to those who have been diagnosed with cancer, for the families of those with cancer and to the caregivers themselves. So, today I have a really special guest. Somebody who fills more than one role as part of this series. Maria is a nurse at the cancer Institute. She's also the family member of someone who went through cancer and she is honestly, just an amazing person, full of energy. I'm sure you'll hear it today. But also full of compassion, care for her patients, care for family. You're going to get all of that today. Maria. Welcome.

Maria Pappas, RN (Guest): Hi, I'm glad to be here.

Host: Glad to have you here. So, I mean, I briefly mentioned a little bit about you. But can you tell us more about who you are? How do you fit into the role of cancer in the community?

Maria: Yeah, so I started in nursing eight years ago. And I think I got into oncology probably seven years ago and it was pediatric oncology/bone marrow transplant. So that was my first kind of like window into the world of cancer in general. And that was in peds. After that, I kind of switched over to acute care in pediatrics and then watching my dad kind of go through his outpatient journey when he was diagnosed with cancer, I wanted to kind of fulfill the outpatient world of, of oncology. So I kind of transitioned to that.

And that's when I got here to Riverside about two and a half years. So, I now work at the Riverside Cancer Institute as an infusion nurse. I sometimes kind of cross over and do radiation oncology there as well. I also work at the Frankfurt campus as an infusion nurse for oncology, but also chronic disease.

So it's like half and half. And then I also work at the ambulatory infusion center at Riverside, where we just do chronic disease infusions, mostly.

Host: So a woman with many skills and a lot to offer. Yeah. So, so basically the purpose of this podcast series, Maria is really wide open to kind of just share your experiences. However you want to share them. You know, whether you want to talk about your father or you want to talk about your work or combine the two. What would you like to start with?

Maria: So I guess my dad has a pretty pivotal role in my career, I want to say. So, like I said, I started in oncology. I was in pediatric oncology bone marrow unit. And that was back in 2016 to 2018. And my dad was diagnosed with prostate cancer stage four in 2018. So, it was pretty traumatizing because I was dealing with cancer inpatient and then at home. So that was pretty, pretty tough for me. And that's why I had to kind of transition out of that role and kind of switched to like acute care pediatrics.

So I wanted to stay with kids, but I just didn't want to do the whole oncology portion of it. Mind you, like what I saw was inpatient stuff. So it was much more, it was harder. It was really, really sick kids. And then I was going home and then having there was cancer at home, cancer at work. So I kind of just needed a break from it.

So I transitioned and I, and I did acute care with kids. And then actually the same reason I left oncology was kind of what drew me back into it, was watching my dad go through his outpatient journey. So he looked forward to going to like infusions. Once a week, he looked forward to seeing his nurses. He looked forward to seeing his doctors. He actually thrived like every time he was there and I was like, wow, this is like fun for him. And I, I only knew like the sad part of, of everything. And so watching him kind of love it, it was, it was odd, but he would just love going there and loved the sense of community.

He'd make friends with the patients around them. And I was kind of like, I kind of want to go back into oncology and do it in an outpatient setting. So it was funny because his journey like drew me away from it, but then it also kind of like brought me back into it. And so that was the, that was the beauty. And I'm glad that that happened and life works out that way, because it truly brought me back to what I really think I will be in for, for the long haul. So, yeah.

Host: Great so a lot of, a lot of interesting things you brought up there. So you said your dad kinda thrived in it. What, what made him want to go to see his doctors and go to the infusion and things of that sounds paradoxical to what most people get scared about cancer.

Maria: I was kind of a tough cookie on him when he was first diagnosed in 2018, he was just like beside himself, he was like, why is this happening to me? He like, felt bad about himself. So what I actually did was I brought him so I brought him to work. I brought dad to work day, and so I brought him to my work and I let him see all the kids that were going through chemo. My boss like had okayed it and he kind of just did like a walk through. And I said, these kids are like anywhere from like two years old to like 18. And they're here fighting for their lives every day.

So like, what's your problem? Like you need to do the same kind of deal. And I swear after that, he was like whole like 180. He was like, I am going to like, fight, like no one's business. So I think also he, when he was first diagnosed, he kind of, the doctors didn't give him a really good prognosis. So that kind of like knocked him down.

But I always kind of told him, like, it doesn't matter whether you're stage one or four, I think a lot of it is mental. Like if you go into it and you just have a positive attitude, like it will pay off. And so once he kind of got a grasp on that, he really just took full force. He, he worked the entire time. He like, he would plan his chemo days on like a Thursday. So he would go to work, go drive himself to chemo, or I would go with him. And then his only day off during the week would be Sundays. He worked as a chef, because he knew on Sunday, he would feel a little bit more fatigued.

So he worked his entire time and then would plan his chemo treatments around that. And the reason I think he liked going to it is cause it was like a sense of community. Like the person next to him was going through the same thing. His nurses kind of like you know he loved going there. He like loved talking to them and he was like the cutest guy and everybody was so excited every time he came. He loved watching TV, loved just he and he, he got joy out of seeing himself feel better and, and see the results of like his lab work, his imaging and, and things like that. So he was determined, cause originally they gave him I don't know,I think they said six months when he was diagnosed and I mean, he showed them, he lived three years after diagnosis.

So I think that a lot of it was just that sense of community and like he thrived in and knowing that the hard work he was putting in was paying off.

Host: That's amazing. That's amazing. And how did that affect you personally? The good times, right?

Maria: So the good times were, it was, it was weird because I was always in nurse mode before I was in daughter mode. My, my brother's a doctor and I am a nurse, but my brother was never able to put doctor hat on when it came to, when it came to dad. It was like, he didn't know anything when it came to him and he's like, big word, like things that I know for a hundred percent, he understood better than me. He just did not like when it came to dad.

So for me, I just went into nurse mode a lot, and I think that it did help me kind of stay on track and keep things moving because they needed that one person in our family that was like, this is what's going on. This is what we need to do. Let's keep moving. Cause it wasn't always easy. And when it wasn't easy, like they needed someone there to just, and he trusted me. So like he knew that like my mom and my brother and everybody else kind of fluffed things up for him, but I was never going to do that. And so he needed that one person that would just be truthful and honest and keep, keep things moving. And so I think my role as like the nurse/daughter kind of helped the situation flow a little easier for my family. Like I took on that role, and so I enjoyed it. And I enjoyed it because it just kept, it gave me the responsibility and it took some of the pressure off of like the rest of my family pretty much.

Host: Okay. Now, unfortunately, obviously as you said, he did pass away and he, but he did much better than anybody expected. I think that's around the time I met you when things were a little bit tougher and you were kind of exhausting all possibilities. Tell me a little bit about how that experience played out for you and for your father.

Maria: When I came to Riverside. So originally my dad was getting treated at the Mayo Clinic. And the only reason was because it was, it was convenient number one, you can get all your labs and testing and all that stuff done in one day. However we realized that there wasn't much difference in the care that he was receiving. It was actually, we followed the same guidelines here at Riverside.

And so eventually when I started here, I transitioned his care to one of our other, to one of our oncologists here at Dr. Hamden. And he kind of took on my dad's care. Unfortunately by the time all that transfer did happen; my dad kind of had exhausted first line, second line, third line, fourth line treatments.

And we had researched, well, I had researched from, from the beginning of his diagnosis, a treatment that was only available overseas. So last March actually we got all our paperwork altogether and we flew dad over to the UK to try this. At the time it was like an experimental treatment specifically targeted for the type of cancer that he did have. Getting him there was very difficult because it was during a pandemic. They weren't allowing, you know, tons of travel to go back and forth. It was out of pocket costs that we had to, you know, figure out and, and come up with, but we got him there. And then when we did get him there, he did, he did pretty well with treatment.

Unfortunately, his cancer had progressed so far that the treatment that he did get at the end was kind of just too strong and it made his cancer a little bit more angry than we thought, but this was a man that had exhausted a lot of other options and was heavily pretreated in the past. I will say that my dad never, never suffered. Not once. And that was part of his, that's always what he asked he, and he was never in pain. He never suffered, he wanted to try everything he possibly could. And we always left it up to him. We weren't those family members that were like, no, you have to keep doing this and you have to keep doing this.

He wanted to. And when he said, yeah, I want to go to the UK. I was like, all right, well, that's it. We're going to the UK. Like, it's, it is what it is, you know? I think that once he saw that, that treatment, once he kind of saw that he had exhausted everything else and he said it was enough, then we were okay with it being enough, obviously.

And he died last year on May 13th, 2021 at home with all of his family around him. So. Yeah,

Host: Well he's missed, obviously, I see that a lot. So let me have you step outside your nurse mode again and into family mode. As mentioned, this is a series where we hope that people can get something out of this, from your shares and you know, you've shared amazingly. What I'd like to ask you is. Again, moving your dad's care here. What things can you tell patients' families, you know, when they're dealing with their loved ones, they may not have the knowledge of a nurse. They may not have the luxury of having a doctor as another sibling or anything like that. To be honest, most of our patients don't even know how the medical system works and to get round from here to there. So, as, as a family member to another family member of patients like who we take care of; what advice can you give them upon based upon that experience that you've had?

Maria Pappas, RN (Guest): So I think that cancer is a, it's a family disease. So once one person in the family is diagnosed with that, everyone goes through it. Everybody grieves, I mean, it's a different grieving process. But everyone is allowed to feel a certain way. And the advice that I would give the family members and the caregivers of those is to allow yourself, allow yourself to feel sad, you know, to feel that, that moment of being sad, because sometimes I felt like I, I didn't do that. I just kept going. And you know, now a year later it kind of catches up with you cause you never dealt with those emotions, but allow yourself those couple of days to, to be in a funk, to let yourself be upset that your mom, dad, brother, sister, whoever has been diagnosed with this awful disease that now is you know, become a huge part of their life. But don't let yourself sulk in that, like give yourself that time to be sad, but then pick it right back up and go into fight mode because you have to. Like, it's I tell my patients this all the time, but when I, when I do these chemo educations, I tell them like, you're preparing for a marathon.

Like that's what you're doing. And, and cancer is a marathon. So you got to get in that mode. So go ahead, allow yourself to feel sad and do what you need to do, but pick it back up and let's do this, because at the end of the day, like you gotta fight. Take that time and take that time to let that person who is going through cancer, be sad for themselves and feel bad for themselves. I allowed my dad to do that. I gave him like a week and then I was like, all right, that's it. Let me take you to where I work, you know? And like these kids are, you know, with hooked up to chemo, playing with their Legos. And he was like, oh my God. I'm like, yeah, like you got to go into fight mode. And so everyone's allowed to feel their emotions.

Maria: The best thing you can do is go through them, go through the emotions, but just don't get stuck in one stage too long, like the sadness and the weepy stage and, and, and that, and, and listen to the people and what they're going through. A lot of the time, me and my mom were guilty of like, we didn't listen to dad when he was like, you know, like I'm tired.

Well, come on, get up and keep moving. You gotta listen. You, you gotta sometimes just listen to them, give them their breaks so that they are receptive to you when you are, you know, giving them that advice. So.

Host: Yeah. So I heard lots of important things from what you just said. Obviously, letting both the family member, as well as the patient kind of get through what they have to get through, but then being their support when they need it. I think another important thing you said is just listening to where they're at at the time and a little bit earlier, you kind of mentioned something which we do see a lot is not pushing them to do something they don't want to do. But also supporting them what on doing the things they do want to do.

Maria: 100%. I never, and I ask my patients this all the time, like, is this what you want to do? Are you doing this? And you'll, and I'm sure you've seen it, Dr. Basha, a lot of the times your patients will be hanging on and doing things for somebody else, not for them. And it's when they come to peace with knowing that.

And I think that's what it was for my dad, as well is like, when they come to peace with knowing like, everyone around me is, okay, this is the decision I'm going to make moving forward. I think that's when their ultimate, like the best decision they can be, that can make is made. So just listening to them once to, until they get to that point.

Host: I agree. Thank you. Now, given all that, let's go back to the nurse mode. Okay. How has all this affected how you are as an oncology caregiver.

Maria: So it's funny. Cause everyone asks me like how I, how I coped with it. And I feel like work was my therapy. I absolutely love what I do. I am not one of those people that wakes up in the morning and is like, ah, I gotta go to work. Like I thoroughly enjoy it. I thoroughly enjoy sitting with my patients, listening to them. And before dad, even passed, like I treated and I still treat every single patient, like they are of like a family member of mine. And what I love about Riverside is that, and why I wanted my dad's care transitioned here is that, that's the vibe everywhere you go.

It's such a family. You just feel like you're a part of a family and it's not just, you're not another number. And part of like another system, like those bigger hospitals, you're kind of just become a number. Cause there's just so many people, but at Riverside, I feel like each patient is like the doctors and the, and the practitioners and the lab technicians and the nutritionists and the social workers each take that time and that individual time to talk to the patient and create that one-on-one treatment plan.

And that's what I try to do. I talk about my dad a lot with every single patient. I don't think there's a day that goes by. They were all so invested in his journey. And even now when there's things that they're going through and I can relate back to like my dad's situation, like I tell them the stories and they love to listen to the fact that like, I am a nurse, so I understand the medicine behind it, but I also understand like the family component behind it. And I understand it as a daughter, as a family member of someone and they trust you a little bit more, cause they're like, well, you've got, well, you've gone through it. So you wouldn't lie to it. Like you wouldn't like it.

Wouldn't like fib to me, you know? And so honestly, I don't think I could have made it. I don't think that I could have coped as well as I did without my patients. And I, and I say this and I truly mean it. I am forever grateful to them. They bring joy to my life. They, that's why I'm always so happy and loud and funny at work. And it's because they, they truly bring that out in me. So I, I do, I thank them for just bringing that lightness and that's the other part is that my dad actually told me before he passed is like, never leave where you are. Cause he had been at every clinic that I worked at for, for different reasons. And he's just like that environment that you work in, they're all such good people and you're just so happy and you're thriving there and, and it truly is because of, of the community.

Host: Yeah, I appreciate that. You know, I'm a little bit of something you shared kind of brought back a memory for me real quickly. When I was first doing my training in internal medicine, my final few months of internal medicine residency. I actually practiced on an inpatient oncology floor back in Chicago at Rush University. And this was back in the nineties when things were still pretty rough and a lot of acute care patients in the hospital with nausea, vomiting. Pain medicines like IV drips and things like that. And so at the end of that rotation, they came up to me and asked me, hey, you know, we have an opening in oncology, do you want to be part of it? I'm like, no way, this is depressing. And, and I did not want to do that. But then, like you said, when you went to the outpatient setting now as a private physician, then I was sending patients to uncover.

They came back. I'm like, huh they're okay. And that kind of actually drove my interest and yes outpatient, you know, the horror stories of oncology are there, but the nausea and vomiting, but there is so much hope that happens in the clinic, and the connections that people make with the, their caregivers, the other professionals in the office, as well as between patients themselves.

Yeah. That it's, it's not a horror story that is imagined necessarily. Yeah, it's rough, but it's not the horror story.

Maria: Yeah. I try to tell that to it's it's funny. Cause when they do graduate and they do get to ring the bell and they do, I can't tell you how many patients are like, I'm sad to be leaving you guys and we're like, we are too, but we don't want to see you again.

But I can't tell you how many times, because you become family, especially during the pandemic times where, you know, they couldn't allow their family members to come in and sit with them during treatment. We were their family. Like, we sat with them, we calmed them down, but you are right. Like these horror stories that do come with like chemo and, and like, oh, am I going to be throwing up all the time?

Am I going to lose all my hair? And it's, it's so different for each patient that you can't answer it, but yeah. It's it's, you're totally right. It is you, there is a little bit more hope and a little bit more just family, like in the outpatient setting. Yeah.

Host: And that's what brought me back. And that's actually why we created this series is to create that environment, especially because of pandemic. You know, there are people who did not know what was going on to their loved ones in the clinic or all this stuff. And that's part of the idea of having this series C-word; Community, Not Cancer is to create that sense of community and for people to connect. And I greatly appreciate all that you've shared today.

You know, you are an amazing person, you really are, and I appreciate all that you do for the patients. I appreciate it all that you did for your dad, and for us as you know, colleague. So

Maria: I appreciate you guys. I love working with you guys. This has been it's I'm, like I said, I'm in it for the long haul. So, yeah, thank you for having me.

Host: I appreciate it again. Well, I want to again, thank Maria for being here. I want to thank you the audience for being part of our community today, by listening to this sharing and being part of it, and I hope you get as much out of it that I did honestly, and we will continue to make this a continuing series and look forward to sharing more stories with you.