Life, Cancer, Etc.
Life, Cancer, Etc.
Resources for Cancer Patients and Caregivers with Olivia Luginski, LCSW, OSW-C
NOTE: You can see the video from this interview on our YouTube channel, here. Many thanks to Courtney and Riley at #AmbitionStrikes for their encouragement to make the jump to YouTube!
Olivia Luginski was my social worker at Moffitt Cancer Center after I was diagnosed with a cardiac sarcoma. Olivia helped guide us through the process of getting help and offers advice for anyone -- patient or caregiver -- who's dealing with a cancer diagnosis. Plus, she's a delightful human being.
To review the resource list Olivia mentioned, submit a request on our website's contact page and we'll email you the 9-page document.
For more information about Imerman Angels' peer-matching service for patients and caregivers, visit www.imermanangels.org.
To contact Moffitt Cancer Center, visit www.moffitt.org.
NOTE: I am not a medical professional. Everyone on the "Life, Cancer, Etc." podcast is sharing their own experiences, not giving medical advice.
Photo courtesy of Oliva Luginski
All other content © 2022 Heidi Bragg and Life, Cancer, Etc. All rights reserved.
You can also find some episodes on our YouTube channel: https://www.youtube.com/c/LifeCancerEtc
I'm Heidi Bragg. I'm a three-time cancer survivor who's also lost a lot of loved ones to this disease. My goal is to connect you with stories and resources that will improve your life so that you can feel happier, more resilient, and less stressed, especially when you're going through hard times. Join me as we discuss life, cancer, etc. Music So this is a little terrifying, but it's also super exciting. This will be the first video on our YouTube channel. We do have some of the audio from the podcast on there. I believe we have all three seasons, but now we're gonna start doing video. And just like with the podcast, I'm learning on the fly and it's going to be imperfect because I am, but I hope it's authentic because I really strive to be honest and open about my experiences so that hopefully that will help some of you who are going through hard things. If you have questions, you can use the contact form on our website. There will be a link to it down below. And if you like it, please subscribe and share so that we can get these resources out to as many people as possible. Thank you all for your support. We've had almost not even listens, but just downloads, like 2,000 downloads of the podcast in the last year and a half. And for something that's a side project and a labor of love that says a lot about the kind of people we have supporting us and the kind of need there is, I guess, for resources. And I'm just grateful. I'm grateful we can help. So without further ado, we'll start the first one. It's kind of funny because I not only screw up Olivia's name at the beginning, I also, the video's choppy and there are times throughout it that the audio's choppy. And you know what? That's okay. Because I think her message gets across and she has a lot of good tips. She's an oncology social worker at Moffitt Cancer Center. Enjoy. So today I'm here with Olivia Luginsky. I said that right, did I? It's Olivia Luginsky. This morning I'm here with Olivia Luginsky, who is a licensed clinical social worker at Moffitt Cancer Center. She was my social worker the first day we walked in there, kind of shell-shocked during the headlights. And okay, so Olivia, next to your name, it also says OSW-C. Can you explain what that means?
SPEAKER_00:Yeah, so it stands for Oncology Social Work Certified. So it's additional certification on top of my license specified in oncology just because it's near and dear to my heart. And it's something that we can just remain involved in if we want to. So that's the additional OSWC.
SPEAKER_01:Okay. And I have to remember, today's the first day I'm doing video. Wait, what does this mean? Oh no, I don't want to hide myself. Okay. So today's the first day I'm recording video and audio. So it's going to be, it'll be great or it won't. I'm not really sure how it's going to go. Okay. So the way Moffitt does it is when you come in and is it like this in every clinic or just sarcoma where you have a social worker who comes in?
SPEAKER_00:So every single clinic at Moffitt Cancer Center, we have almost 60 social workers. And majority of the hospital is outpatient, but there are inpatient social workers, but they go by services instead of clinics. What does that mean, by
SPEAKER_01:services?
SPEAKER_00:Yeah, so services... Typically, hospitals go by floors, which is a good way to differentiate. So there's certain social workers that, for instance, Five South is a surgical floor. Okay. Okay. They base it off of a service. So there are social workers that specifically work with an internal medicine team. There are social workers that specifically work with the surgical oncologists, specifically in the ICU. So that's more inpatient. But it's really only 20% of our hospital when 80% is outpatient clinics. And we, at this time, have over four campuses outpatient. So there are a lot of us social workers and in sarcoma specifically, we are small. And so there's only one of me in sarcoma outpatient. And back to your general question of how we kind of get involved is my medical team consults me for the patients that do sarcoma. need some support or resources. I have a vast list of tasks and kind of what falls with inside of my role. And so if a medical team member, a nurse, a mid-level, which is a nurse practitioner or a PA or an MD, think that a patient or caregiver would benefit from social work support, they consult me. So they put in an order and I come up and majority of the time try to provide support in person. Sometimes it doesn't work that way and we have to provide support over the phone or through telehealth, which is okay. And so we're consulted for each patient. We don't see every single patient, unfortunately. But yeah, that's how we kind of get involved from the start. And then it's kind of a continuity of care. We follow along and we always offer our resources. And as the treatment plan unfolds too, our roles can kind of shift with what the patient and family needs. Yeah, well, and
SPEAKER_01:it was... Okay. I have a couple of questions for you and then we'll talk about how you got into this, but when do you have, do you remember, I don't know if you remember it was four years ago, but do you remember what they like? What did they consult with you for me going? This is probably fatal. Her family's probably going to need help.
SPEAKER_00:Yeah. So typically it is a, we're such a, we're such a close tight knit team here. I am coming up on five years with the circle on the team here at Moffitt and I Thank you so much. we've kind of created this awesome team so that they can process all of the medical information with you and next steps and what that treatment plan looks like and talking about expectations. But then I can come in and help process the emotional side of it. I'm focused more on the mental health and how you're coping. And so it can kind of look very different. Sometimes patients are in apparent distress. Sometimes Individuals are in complete shock. Sometimes it's in between. Sometimes there's anger, depression, anxiety. And so I kind of come in and support that adjustment and support that emotional toll and recognize that this is a safe space and this is what my role looks like to help navigate you with that new diagnosis. Because it's really...
SPEAKER_01:So we had gone to my, because I'd had cancer before I had another oncologist, we had gone to her and she said, this will, you know, we're friends. I trust her judgment. She's just like, this will probably be the thing you die of. Like, this is not, this is sarcoma. This is what sarcoma normally does. And, you know, knock wood and thank God, like four years later, I'm okay. But so we had had that kind of initial conversation. So our expectations were very low. And then we met with a resident who, who gave us a similar outlook. And then we met with Dr. Broll and he said, there's this tiny little window. If you hit it, the outcomes can be fantastic, but it's small. And I'm like, well, give me numbers. Cause I want numbers. I want concrete data. He's like, well, I'm like, am I talking like 1%, 20%? He's like, well, probably less than 5%. And so we had that conversation and he, and knew we would have to go home and have that conversation with our children. We talked through some of that with Dr. Broll. I think you might've even been in the room for that. I don't remember. Holly was there. I remember that. I think you can, might've come in later. And he's like, this is what I tell them. Like, we're pretty sure mom's going to be around for Thanksgiving. And this was in June, I believe. Pretty sure mom's going to be around for Thanksgiving, but we're really not sure after that. And that's a, It was bad enough to hear, but to tell your children, that's the part that, and I always tear up when I say this, that's the part that's just kick in the gut awful. Just rip your heart out. Yeah. Yeah. And, and the thing is though, after we met with Dr. Broll and you were there and Holly was there somewhere in that, it's kind of a blur, but you, you started talking about Absolutely. So.
SPEAKER_00:Taken aback, I am a military brat. So my father was in the army. We moved around all over the nation my whole life. I moved schools every two years and eventually became independent when I moved away for college. So I have always kind of, it was a learned behavior to be the new girl. It was a learned behavior to have to... Yeah. A little bit more about my story and how I got into the field of social work. I have adopted siblings. I'm the oldest. And my adopted siblings, both of which grew up with developmental disabilities. So I naturally fell into the role of advocate for them, role of caregiver for them with my mom, especially because my dad was traveling so much for the military. Right. And so when I went to Florida State University for my undergrad, and it was perfect distance away from home, and I felt like I could finally be independent. And this was the first time in my life I'd ever lived in one place for four years. And so I remember my dad took me to orientation at Florida State. And the first, like within the first couple of days, I knew my major was social work. It just was always... There was no other options for me in my head. It was something that fit so well. It seemed so right. Within the field of social work, we kind of follow these six code of ethics. And there's something called the National Association of Social Workers. And these six code of ethics are, you're really testing me here, are going to be service, social justice, dignity and worth of a person, integrity, competence and the importance of human relationships. And so those six things were just like, why wouldn't I do this? This is exactly what I want to do. And so I probably was one of the large minority of people that stuck to their major the entire time throughout college and continued pursuing it. It just was something that I felt passionate about and knew I could make a difference in. and wanted to make a difference in. And so I attribute it to an incredible, incredible family, incredible people in my lives and my siblings and kind of the path that it took me. And so how I got into oncology was honestly, I am just grateful for having some connections here at Moffitt. I wanted to see if it was a good fit. I think Some people go in oncology really hoping that it is a good fit. And sometimes it can be too overwhelming and too much for people, which I think is okay. And I just found myself flourishing and wanting more. And I had some incredible mentors and supervisors and people to navigate me along the way as well. And so... it just, it worked out pretty beautifully. And I'm really, really thankful that five, I can almost five years later can look back and say like, I made the right choice in pursuing social work, especially in the field of oncology.
SPEAKER_01:Well, and it, it just seems like, like you said, it's such a natural fit for who you are as a human being. Thanks. No, it is. It really is. And, and so what do you think is, are some of the most important things for people to know when they come into a cancer center, because I talk to people a lot when I mentioned the podcast or I talk about, you know, mentions they got somebody in their life who has cancer. I'm like, look, I've had it three times, not dead eight years after my first diagnosis going on nine. They say, and I talk about the support services at Moffitt and they're like, I wish I'd known something like that was out there. And I know every place isn't like Moffitt. People ask why I fly literally all the way across the country every three months to do my checkups and stuff. That's why. Moffitt is a very special place. But I know there are other support services at other cancer centers. So what are things you should know about and what should you be asking for at some of those first visits with an oncologist?
SPEAKER_00:Yeah. So when you said most important things for people to know when they're first diagnosed, I think the emotions are flooding. Yeah. There are so many questions that you have. There is so much uncertainty, so much unknown. And off the bat, I just want them to know that they're supported. I think that is the least that we can do is letting them know that there's a village behind them. Of their families, of their loved ones, of their medical team, and then of community resources. They don't have to do it alone. No one has to do it alone. I think that is from the start, no matter where you are mentally, coping wise, that you're supported. We see a lot of patients when they're first diagnosed and it can be a spectrum. I have individuals that say, Olivia, I want to know every resource that you have because I'm going to use it and I know that I'm going to fight this and I'm going to get involved in the community. And then I have patients that are in complete shock and say, I don't want any resources. I don't know what I'm going to do. I don't know how I'm going to pay for my house. I don't know how I'm supposed to raise my children. And these questions that, and there's things in the middle as well. And so I think just letting them know that they're supported and the biggest thing being one day at a time, truly like one day, And sometimes it's like one minute or one half hour, you know, because you're just overwhelmed. Exactly. It's a very overwhelming experience. Absolutely. And there's so many changes in dynamics and adjustments that are being made overnight. And so... I'm the breadwinner of this household and now I'm going to lose my insurance for my entire family. And how are we going to afford this? And how do I apply to disability? And what is my, and what are, what's going to happen to my kids? My support system doesn't live local. There's so many questions that can be incredibly overwhelming in this situation. And so just to be a sounding board, to listen during those stressors, to help navigate them through that, to help counsel them and provide, like just sometimes sometimes, Just an active ear to like validate them that it's okay to feel incredibly anxious and stressed and overwhelmed and all the emotions, anger, whatever it is. Um, and in regards to the services, I really, every single time I walk into a room, um, Every single resource that I know of, I want to make sure that patients are aware of. But when I walk in the room, I oftentimes don't know where it's going to lead to. So some patients straight up say I'm focused on financial assistance resources. Some patients say I have young ones and I am focused on how do I explain this diagnosis to them? How do I... talk to my kids about this terminal illness or how is my family supposed to cope with this? And some things are more concrete. Some things are more clinical and emotional. And what I never want to do is overwhelm them with resources when they're already in an overwhelmed place in their life. So it's my job to meet them where they're at. I think that's what's so important is meeting the patient and the family where they're at emotionally. Well, and you were really good
SPEAKER_01:about, you were really good about kind of meeting, meeting us where we were, but then saying, here's my phone number, here's my email, here's my this, you can call anytime. Here's a folder full of information about resources so that when you're ready, you can look at it. Because I'm usually a voracious researcher, but in that moment you are just so flooded with, okay, okay, okay, so what's next? Okay, so what are we doing tomorrow? What are we doing next week? Crap, I'm not going to be able to work full time. You know, it's all those pieces just, and you're just kind of spinning. So having that, making, I think establishing a connection with you was one of the primary things we did in that first appointment so that we felt like we could come back to you later for resources and help
SPEAKER_00:yeah that's a really good point the establishing the rapport is definitely a good start but then you having those resources to go back to because when there's a time where you can breathe and you feel like you can process And you feel like you've come to the point where you can look at resources, then they're available to you. And you know how to contact me if you have questions. And a lot of these resources have applications and require letters and need medical confirmation forms and documents. all of this lingo and terminology and treatment plan information and advocacy efforts. So one of my biggest things is navigator and making sure that you, where I'm leading you in the right direction. And if I'm not the person that can answer that question, I can lead you to the person and refer you to the person that can, or I can refer you to the community resource that can, that might have a little bit more info or might be able to support your family. I
SPEAKER_01:think, yeah, it's, Olivia was kind of like a guide. Like, and you and Holly and Dr. Broll all work together really well. And so here's a, for example, like I had to, they had wanted to send some of my tissue samples from the tumor that was in my heart off to do what's called a foundation study. And that's a very expensive genetic study. I think it's, it's not just genetic, but they also do tissue samples and whatever else. And it's pathology and genetics. And so, That same day, they came in with forms and said, there's a financial assistance form for this because it's not always covered by insurance. So here you would fill out this and you would do this. And they got all that taken care of so that that was already being processed. They were already doing the clinical work, but I wasn't worried about cost and whatever. Like at most, it will be this amount of your income or this dollar amount. I can't even remember what it was. So if you're okay with that, fill this out and then this will help and then we'll let you know where it goes from there. Because all those, I think the hardest thing is there are so many different things that need to be done pretty much right now. And it's like, how do you triage which thing is most important in that list when?
SPEAKER_00:Absolutely. You're like, what fire do I put out first? Yeah.
SPEAKER_01:So what about, I'm looking at my list of questions. What about if someone's not at Moffitt, what are some, what are, are there any community or national services that they could ask for if they're maybe in a smaller town or at a smaller cancer center or something like that?
SPEAKER_00:Absolutely. So, We have resource lists. Majority of the clinic social workers have created community resource lists that are not Moffitt related in any way, more diagnosis related. And so you do not need to be a patient at Moffitt to benefit from them, to research into that, to look into them, to receive support from them. Specifically, I'm just talking within the scope of sarcoma because that's our clinic, but I have a sarcoma resource list that I've provided to individuals outside of Moffitt that somehow I've gotten in connection with, or maybe their insurance wasn't in network with Moffitt, so they're seeking local support and local chemo and radiation or local surgeons. So with the resources, typically they are... I haven't organized where I'm financially related to transportation, lodging, prescription assistance, fertility. Fertility is a big one. And thankfully becoming more of a topic that hospital systems are becoming comfortable having with their patients.
UNKNOWN:Yeah.
SPEAKER_00:And then in regards to emotional resources, a lot of those can be specific to the facility. So, for instance, at Moffitt, we have patient support groups. We have caregiver support groups. We have a couple or actually a good handful of diagnosis-specific support groups, such as metastatic breast cancer, a head and neck support group, a thoracic support group. We have a good handful of those. And then we work in collaboration a lot with an amazing program called Immerman Angels, which is spelled I-M-E-R-M-A-N. It looks like Immerman. And that is an international program, actually, that matches you with a mentor with the same diagnosis. Oh, that's awesome. It is. It really is. It's like Big
SPEAKER_01:Brothers Big Sisters for cancer. I love it.
SPEAKER_00:That's a really good way to put it. Exactly. receiving a diagnosis or terrified or overwhelmed or stressed. So Emberman Angels is a database where they can match you with a patient with a similar diagnosis. And there's the gentleman, Mr. Emberman, he went all over the world. He had a diagnosis and said, why? I know that there's other people out there with my diagnosis. Why can't I find them? And so he created this nonprofit. And so that is something that no matter where you are in the country, Moffitt or not, you can submit a referral online yourself to match with someone that can connect you with a patient. But even better, the caregivers can connect with another caregiver, which I think is something where sometimes the caregivers and the loved ones and the spouses or whoever that caregiver is, is on the back burner. And So Immerman Angels is a really beautiful resource to offer the caregiver as well, whether it's a parent, a child, a spouse, so that they can connect with another caregiver of that same diagnosis too.
SPEAKER_01:I will, and I'll get the correct spelling from Olivia and I will put it in the notes for this episode because that's, I'll tell you, do you know, well, there's a tech in, whatever the appropriate term is, down in radiation. And her name's, her last name's, well, her first name's Michelle. Her last name's Jolly. And she is awesome. And she told me as I was coming through, you know, you're there every day for a month, for six weeks, every weekday, and you talk a lot. And she told me about a guy. She said, you know, we have people with sarcoma that are just fine. She's like, there's one guy. He had it like five years ago. He had it like 15 years ago. He still comes in and says hi. And just that, that, that this didn't have to be fatal.
SPEAKER_03:Like
SPEAKER_01:that there was that sliver of hope that that wasn't just people blowing sunshine, you know, it helped. And I was so grateful to her for that, for that little bit of, there is somebody like you who's still around, still comes in. And I told Dr. Roll, once we got through the critical part, I said, now I look at this as maintenance. I know things are going to come up. Weird stuff comes up all the time. But I look at it like maintenance. It's like car maintenance on an older car. We're going to have to go in and do things from time to time, but it doesn't mean the whole car is going to fall apart. It's okay. And I don't know, just having those little glimpses of how other people have gotten through it helps give, or at least help gave me perspective for how I was going to get through it.
SPEAKER_00:I love that. That warms my heart too. Just that glimmer of hope. And it's so easy to lose hope throughout this entire experience. And to have those individuals to support you and validate you and just say, I know you're a fighter. And I know that there's people that are 15 years out from this. And I know that you'll get there someday. It just is refreshing. It made a huge difference. Yeah. And I want that for all of our patients, too, to just feel supported and know that no matter what, that we're here to guide you and support you and lift you up through the good days and the bad days. For real. And
SPEAKER_01:here's one thing Olivia does for me is she gives me the list of which hotels are offering a Moffitt rate. And sometimes... There was one that I really liked that is no longer doing it. So that's disappointing, but sometimes, but she'd have to provide a letter and she would send the letter and say, Heidi Bragg is a patient. She'll be here these days, blah, blah, blah. And that would get me a significantly reduced rate at the hotel. And, you know, when you're going for treatment, that's something to ask about. Are there hotels in the area that will give a discount? Because that saves a lot of money.
SPEAKER_00:It doesn't seem like much of the time. Yeah, exactly. Yeah. So significant. Let's see.
SPEAKER_01:Let me look at my questions to make sure.
SPEAKER_00:And just to that point to the cancer diagnosis and the financial toxicity that it can create within an individual and within the household is so significant. And so any little. like a discount on a hotel, it makes a difference. I mean, the cost of gas right now is unreal. So any of these little times where you can save money or be navigated and have a lunch at Moffitt or be able to save up so that you can pay for your treatments, that's definitely important.
SPEAKER_01:Yeah. I don't know what life would have been like if we didn't have good insurance. Because while expensive, I mean, still with co-pays and deductibles and all that stuff, it was still expensive, but it was manageable. So any other tips and tricks or things you can think of that we haven't already covered that patients should know? I
SPEAKER_00:think back to the point of taking it day by day and minute by minute, like we talked about, there's something... not so powerful about staying present. We have such a tendency to, just as a society, to focus on the future and jump ahead and want to plan and want to figure things out. And that future and that uncertainty just leads to anxiety and it can lead to worry and it can lead to what am I going to do? And it starts to snowball. And I see patients sitting in front of me and caregivers sitting in front of me kind of spiraling. Like, what am I going to do about this? And A and B and C and D. And sometimes what I'll do is complete mindfulness practices with them and just something powerful about bringing awareness to just being present. And there's only so much practice. that a human can do in one day we only have the capacity for so much there's only so many hours in a day and so to know that you'll get there let's figure it out let's kind of make a list together on what's priority and what isn't and also I kind of try to provide some psychoeducation about coping, about self-care, about stress management, about something called worry scheduling. Worry scheduling kind of looks like, okay, if you have a problem, is there something that you can do about it? No. Okay, is there someone that you can call to talk about it? Yes. Okay, maybe that'll help. Is there a resolution? Sure, then identify that. But if there's nothing that you can do about it, how do we move on? Or how do we move past it? And that's the difficult part is the moving on and the trying to remain present and not jump to that finish. One week from now, one month from now, one year from now, 10 years from now perspective, because it can be crippling. It can be really crippling and debilitating when we try to jump to those conclusions, which are just so natural. For us, and I think as a society, we've destigmatized a lot of mental health challenges. And I will be the first to ask if I can assist you in trying to find a therapist in the community. There's something so powerful about talk therapy, along with if you were interested in getting established with a psychiatrist. psychologist on LCSW like myself to help you in the community as well because you're coming to Moffitt appointments but you are a person you're not just a patient and you have a world outside of Moffitt and so with that world I feel like you individuals can be supported best by seeking mental health support and And we do have a behavioral health clinic at Moffitt. We do have psychologists and psychiatrists across the street in our supportive care building. But as you can imagine, the caseload is high and there are some criteria to getting into that clinic. So if... individuals do want to be seen soon and seek mental health support. Oftentimes I recommend trying to find someone local because it's much easier to see someone in the town that you live in than making the extra trip out here to Moffitt to see that.
SPEAKER_01:We did. Yeah. We established with somebody local and pretty much as soon as I got the diagnosis and it was hugely helpful. And my husband, Kevin said, we need to get a therapist here. established care with a therapist now so that as things come up and we all went together to the first one, sometimes one of us would go, sometimes the other would go, sometimes one of the kids would go, sometimes we'd go with one of the kids, but we had Sharon. She's done a few podcasts for us too. We had Sharon to just help us process and give us tools as these new things came up. Because I always tell people, therapy is just tools for your toolbox. You have never been through this exact thing at this exact point in your life before. So I don't know how to be a person. I didn't know how to be a person with sarcoma. So we needed tools.
SPEAKER_00:Absolutely. There's individuals out there to assist you with those coping mechanisms and help facilitate that personal development because it can seem so isolating sometimes. Yeah. Yeah. And with the continuity of care too, I see patients from their first day here, I see them in the middle of their treatments, at the end of their treatments, and people are on very different spectrums of whether they're ready for support or not. And so I think it's so beautiful. It doesn't matter where your treatment plan is, you're going to benefit from it. But back to that point of meeting you where you're at, if you feel like the start of your treatment. You don't want to talk to someone, but maybe once you do get settled into what that treatment plan looks like, because then you know exactly what to expect, maybe that extra layer of mental health support, maybe then you're ready for it. That's true. And that can be something that I've seen a lot more of because they want to get that treatment started right away. They want to start their chemo, their radiation, have their surgery scheduled, be post-op before they add extra appointments on, which is understandable. And no matter what, I'm going to make sure to meet you at that level and navigate you at the point. But I would be remiss if I didn't encourage our patients or even educate our patients about the benefit of support in the community, psychosocial support.
SPEAKER_01:For sure. And it makes a huge difference. And especially if you don't have a large community of people around you. getting those services in places is crucial. I was going to ask you, so what, so what does someone ask if they're not at Moffitt, if there may be a smaller clinic, who do they go to number one and number two, what is that question to ask about what kind of support services or supportive care resources are there around me? How do they, how do you word that?
SPEAKER_00:So are you asking how we get consulted for social work and then how we see them?
SPEAKER_01:Well, more like if someone's nowhere near Moffitt, say they're somewhere completely different and they go to their oncologist, what are the right questions to ask to connect them with those kinds of resources in the community where they live?
SPEAKER_00:I see. Okay. So most local oncologists will have a social worker on their team. Okay. Of some sort. I would say always inquiring if there's a social worker available to speak with or a social worker that contact that they can reach out to. We have many different roles dependent on the facilities and dependent on where you are working in the community. I think that some of the larger establishments have a more robust resource list. But I never want individuals that might be in a small town that might not have access to the certain resources of a larger facility to not have the opportunities and not have the resources. And so I would always inquire about a social worker locally. There are lots of national websites like Cancer Care, American Cancer Society. I'd be happy to email you my updated sarcoma resource list, which does have a handful of general cancer support websites on there too. So you could share that. That'd be great. And I can put that in the show notes. Yeah. Yeah. And I think back to what you said, too, at the very beginning, where you were a researcher, you were like, I'm gonna look into this, and we can get so sucked into this, like sinkhole of research and information. And it's so overwhelming. And that can also trigger anxiety and emotions. And so some of these resources help guide you into something that is palatable and Like a safe place to do research, sort of.
SPEAKER_01:Because I didn't, Olivia, to be perfectly honest, I'm a person of faith and I just like, I normally am a voracious researcher, but I knew if I went down that rabbit hole, I wasn't coming back. So I was just like, do I feel at peace with the providers I've chosen? Do I feel at peace with the treatment plan? Then we're going to do that. And I'm not going to do my usual laborious researching because it just
SPEAKER_00:stresses me
SPEAKER_01:out.
SPEAKER_00:But that is so insightful of you to recognize that. I mean, to put that boundary up and say, no, because I know what it's going to do if I do research it. And to have that personal boundary with yourself and just trust in your medical team and in your family and the resources that you had. That's a, that's a, I mean. Well, that was my second cancer of three. So
SPEAKER_01:I had kind of
SPEAKER_00:learned from experience from the first one.
UNKNOWN:Yeah.
SPEAKER_00:Absolutely.
SPEAKER_01:No, I would love to get that resource list and I'll
SPEAKER_00:repost it for people. Self-care is so important. Self-care for patients, self-care for caregivers, self-care for team members, because nourishing ourselves is necessary and a part of life. And if we don't nourish ourselves and support ourselves and care for ourselves, how are we supposed to care for anyone else?
SPEAKER_01:Oh, yeah. My mom always says you can't give water from an empty well.
SPEAKER_00:Absolutely. I
SPEAKER_01:love
SPEAKER_00:that.
SPEAKER_01:She's a wise woman. Okay, so what has this line of work and study taught you about yourself or life or whatever? Oh
SPEAKER_00:my gosh, so much. I feel like I could write a book on it. You
SPEAKER_02:should.
SPEAKER_00:It has taught me so much in the last five years that, yeah, we... back to the never a dull day and no day is the same. I think that teamwork in a very cliche way of saying it, teamwork makes the dream work. If it wasn't for the team that we had to support our patients, I mean, it just relying on each other to check in and to make sure that our patients and caregivers are navigated in the best way possible. I think this line of work has taught me that human beings are so strong and resilient and beautiful. And that mental health is something that every single on one of us are challenged with and as we continue to highlight it and seek support for it just to at the end of the day our loved ones that are going through this even if you don't have the right thing to say to them just let them know that you're there for them and let them know that you're listening and basically that you're stronger than you think you are. It's
SPEAKER_01:something I appreciated when people said, I don't know what to say, but I, and they basically what you said, I don't know what to say, but I want you to know I'm here and I'm here to help. I don't know what to offer, but I'm here. And that was a beautiful thing. So
SPEAKER_00:let's see. There's lots of books out there too. There's, I mean, I know a lot of people aren't readers and now podcasts and audio books are a big thing, which I always encourage if that's something that you really enjoy, because there are hundreds of resources of books for patients going through this, for caregivers going through this, for children, spouses. And so I always say like to look into it. And I know Dana Farber, MD Anderson, they have these book lists. I have ones for kids where just if you want to play in your car while you're driving and just to hear perspective of someone that is experiencing it as well. I think that can be a very personal and cathartic experience and outlet for you too.
SPEAKER_01:That's why I started doing this just because I just felt driven to feel like that divine tap on my shoulder. Like you need to, you need to, You need to tell your story and allow a place for people to tell their stories and for physicians and clinicians and professionals to share resources and perspectives because it just feels so overwhelming and lonely when you're in it.
SPEAKER_00:Wow. Full circle.
SPEAKER_01:Yeah. People have been very generous with some very, very difficult stories. And I greatly appreciate that because I've heard from others. Like, man, when my dad was going through cancer and things just weren't good, I listened to this one that someone else had done and it made a difference. And that just, that makes it worth it. This is kind
SPEAKER_00:of a labor of love. And Heidi, it's so beautiful to see how far you've come. It's so beautiful to see what you've persevered. You're making me cry. Yeah. The strength, seriously, though, that you and your family have had through the past. I mean, I don't believe that it's been four years since we first met because it just seems like recently. But back to the point where your strength and perseverance, it just have been something that I think you're doing an amazing, amazing thing and trying to support others. Yeah. know that they're not alone in this journey and what I think is so beautiful about Moffitt too and about the team members here is that every single one of us have been touched by cancer in some way in our lives and so we all come back to like those loved ones that we know that either have or had an oncology diagnosis every single person has some story to share about it and It kind of brings us together in that way. It does. And you guys are just...
SPEAKER_01:I think Moffat hires for not just technical skill, but for personality. And I can't even think of the other word I want for what else to kind of encompass this, but... It takes a special kind of person to work in oncology in general, and I think Moffitt's people are just absolutely top-notch. I've been in lots of clinics at Moffitt, and they're just top-notch.
SPEAKER_00:Well, I thank you for that. We've got some top-notch patients, too.
SPEAKER_01:It's a very unique place. Okay, so what are some personal bucket list items for you? Oh,
SPEAKER_00:so... I'm a traveler. I love to travel. I love to explore. I think that's been troublesome with COVID because we've been limited on traveling. I would say bucket list items, since I can remember, is one of these days we'll be attending a concert at Red Rocks in Colorado for sure. That is one of my biggest bucket list items. And I have always, always wanted to go whitewater. rafting as well. Um, I think, yeah, those two probably are top of list right now. Yeah. What about you? Um,
SPEAKER_01:well, Kevin, I, when all of our kids are launched, we're buying a place in Italy and we're going to live there a couple months in the summer because he's in education. So we can do that and I can work from anywhere. And then when we retire, we'll probably live half there and half here, but that's what we want to do. And, and just, we like to travels our thing too. When we have, we don't need a huge house. We don't need, you know, fancy cars, but we love to take trips. So yeah, we'll do that when we have the place in Italy. I'm just saying you guys could, you know, you guys could go when we're not, when we're not having to rent it out or come visit while we're there. It'll be neat. It'll be neat. I've already got my eye on a couple of places. So, all right. Out of everywhere in the world or in your life, what's your favorite place to be?
SPEAKER_00:Probably on the beach with my husband watching the sunset.
SPEAKER_01:That's a beautiful thing. Yeah. I'm excited. I'm coming back to Moffitt next week. And so maybe I'll stop. Are you going to be around next week? Okay. All right. Do you have space in your day or are you booked every hour of the day? Don't
SPEAKER_00:worry. I'll find time. Yeah. We'll connect. I'll come up to clinic.
SPEAKER_01:No worries. Okay. That'd be awesome. I think I'm meeting with Dr. Broll on Friday. So I'll email you. Okay. Thank you. Oh, sorry. Go ahead. Sorry. Sorry. There's weird. The audio crackled for a minute. I just want to say thank you so much for doing this because it's so overwhelming when you first get diagnosed. So to know what to look for, to know what to ask for, to know who maybe a contact person is who can help guide you through that is really, really critical, or it was for our family.
SPEAKER_00:You're so welcome. Absolutely. I think it's just not every day that you get to do something like this, and I feel very honored. And I can't wait to tell other patients and caregivers about your podcast so that they they can also feel less alone and also feel supported in the journey. I think you're doing an amazing thing. Um, and just, it's very valuable in this, in this world and podcasts now are, um, Just the new thing. Everyone is listening to them and happy to support anytime and share what our role is and provide psychoeducation about what resources are out there too. Even if we just help one more patient, then it's all worth it, right?
SPEAKER_01:That's what I think. If it makes one person feel less alone or feel like they've got somewhere to turn, then my work is done.
SPEAKER_00:Thanks,
SPEAKER_01:Livia.
SPEAKER_00:You're so welcome. Thank you, Heidi.
SPEAKER_01:My thanks to Olivia for being willing to do this interview and for all she's done for me and for my family over the last four years. All the advice and support and resources have been invaluable. As you go around the world this week, please do something nice for somebody else that lightens their burden a little bit and make it a great week. Thanks for watching and listening.