Educated Patient® Webinar: Stomach Cancer 101 Series: Part III – Survivorship and Mental Health


View the full CURE® Educated Patient® Webinar: Stomach Cancer 101 Series: Part III – Survivorship and Mental Health

Ryan McDonald: [00:00:00] Hello everyone, and welcome to today's live broadcast, a CURE Educated Patient Webinar, Stomach Cancer 101 Series: Part III, on Survivorship and Mental Health. I'm Ryan McDonald, Associate Editorial Director of CURE magazine. We are pleased to bring you this webcast presented by CURE and in partnership with Debbie's Dream Foundation and our sponsors, Bristol Myers Squibb, Daiichi-Sankyo and Merck. Now, there are a few important announcements before we begin. We encourage you to ask questions during the event, which you can submit by typing them in the Q&A box on your screen. You will be receiving a survey via email tomorrow, and as a thank you for watching the full webinar and completing the survey, you will be entered for a chance at winning a Visa giftcard. And now, I will like to introduce to those who will be leading today's discussion. We are pleased to be joined today by our moderator, Dr. Samuel Klempner, a gastrointestinal medical oncologist at Massachusetts General Hospital. Joining Dr. Klempner is Julie Larson, a licensed clinical social worker, Melani Vincelli, Director of Debbie's Dream Foundation, leader of the New Jersey South Chapter, and Christie Leonard, Director of Debbie's Dream Foundation, founder of the North Carolina Chapter and author of recently published novel, Seriously Cancer- Seriously. Thank you for joining us today, and I will now pass things off to our moderator to begin the discussion.

Dr. Samuel Klempner: Thanks a lot, Ryan. It's really a pleasure to be here with everybody, and this is a very, very important topic and way too much to cover in this time, but certainly, we'll try to get through some key aspects. So there's really two sides of this equation, the patients and the caregivers, and so we're gonna try to address both of them, but I'm gonna start, maybe, by asking Julie, you've seen a lot of patients go through this journey, so what are some of the things that you've learned to help patients understand their diagnosis? Which is a common thing, you hear the word cancer and then everything else kinda stops. So how do patients can learn to think through this?

Julie Larson: Sure, well, thank you for asking, and I'm glad to be here today to join all of you. I'm sure we're gonna get a lot of different perspectives on this. My perspective and my lens as part of the team, the mental and emotional impact of [00:03:00] a cancer diagnosis, and how people experience a lot of feelings of overwhelm, anxiety, fear and uncertainty when that word cancer is said to them. And I think one of the first steps in that process is beginning to educate yourself, to learn more, because what I find and what I have listened to over time is that a lot of worry and a lot of anxiety, at the end of the day, there's an unanswered question there. And if we really sit with that and look at our worry is and what our fear is, we often find that we are flooded with a lot of uncertainty and a lot of questions. And so I often tell people to begin, let's really work to understand your lane in this. What is your diagnosis? What are the treatment options available to you? How can that begin to generate a list of questions that you can ask your medical team? And then I'm saying medical team, I think the other step to that is, as we're learning, who is your medical team? What - for many people, it's the foray into understanding the health care system, so who are the different people? You've got your oncologist, you might have a surgeon, you might have a nurse practitioner, chemotherapy. There's all - complementary alternative medicine or palliative care. Who are all these people? And that might include peer support. So what - so kind of beginning to understand the medical piece of this, diagnosis and treatment, but also who's along with you in the journey.

Dr. Samuel Klempner: I think, well said. We're lucky enough to be joined by people on both sides of that, patients and caregivers, here on this webinar. So I will ask Melani and Christie the same questions. How do you understand this as both patient and caregiver? And what are some of the tools that you found out there through Debbie's Dream or other resources in general? How did you come to understand your team and what was going on with the care and the diagnosis? So maybe, Melani, lead off, and then Christie to follow.

Melani Vincelli: When I was first diagnosed, I have to tell you, I was a deer in headlights. You hear cancer and then you hear you're diagnosed with a rare type of cancer, it just absolutely - a lot of people can't wrap their head around it. When I was diagnosed 13 years ago, I didn't have available to me the resources that we can offer to people now, and I do what I do because I wished I had someone like me to speak to. Debbie's Dream Foundation provides everything from A to Z. They provide you from stomach cancer 101 to getting your affairs in order. This is so important, as - and with the National Comprehensive Cancer Network's guide for stomach cancer. It's right up on their website and you can read all about it. Sometimes [00:06:00] it's not the patient that will do the investigative work. I have to tell you I could not wrap my head around it, but someone else in the family will. As Christie will tell you, she was a very active caretaker in her husband's journey. I didn't have the pieces of the puzzle that I needed as much as we have now, and to be hooked up with an actual group that can take care of the needs - you can talk to somebody that survived it, like I have; you can talk to somebody like Christie, that was a caretaker; you can talk to a mother or a father or sister or brother. It just helps to hear from someone that's gone through it what you may experience or what - they can send you to the website, you can click on the tabs and read everything about it. So from 12 years ago, 13 years ago, to now, we're very lucky to have this resource available to us.

Dr. Samuel Klempner: And I know, it is getting better and better. And Christie, what was your experience sort of sitting in the chair, right there in the office from the beginning?

Christina Leonard: Thank you also, again, for - everyone, for allowing me to be part of such an amazing group of people. It's truly an honor. Being in the chair was very lonely. It was very lonely, it was very, "Does anyone else know what I'm going through?" I wanted Tony [ph] to just focus on his strength and enjoying time with the kids and making those moments count, whereas I was trying to balance work and kids and treatment options and doctors' appointments, and things of that nature. So when I found Debbie's Dream Foundation, I was actually just looking for another wife who was going through what I was going through. I say it all the time. When you take a group of people who are going through a hardship, a challenge, and you put them all them together and they're - when they're going through the exact same thing, you get help each other get through it, with that experience and with that strength, providing the hope, just another person that gets it. And that, truly, was how I stumbled Debbie's Dream Foundation, and I was just looking for another wife. But I will say, and I think we're gonna touch base a little further on, so I won't get into all of that. But I will say, I didn't wanna feel alone anymore, and I definitely found another family within Debbie's Dream. And unfortunately, I had the opportunity to go through it twice, with Tony's [ph] recurrence, so I learned a lot of different things along the way.

Dr. Samuel Klempner: I think it's really fortunate when patients have a person with them to advocate and be a caregiver, and unfortunately, [00:09:00] some patients don't, and it's great when there's organizations that can step in and serve some aspects of that role. So I'm gonna ask you to maybe go back in time a little bit, if you can, and think about questions you would've liked to have asked, or what are some of the key questions that, now that you're involved in helping many patients and caregivers beyond yourselves, what are some of the recurrent themes and questions that come up that caregivers should ask the provider when hearing about this diagnosis? I agree, the NCCN list is fantastic and something that we try to push around, but what are some of the things that you've noticed? You guys have both been doing this for quite a while, so maybe, Melani, I'll ask you to go back 13 years ago and think about, if you went back in time, what would you have wanted to ask?

Melani Vincelli: Wow, if - I wanted to be given hope. The problem I was having was that I knew I was in dire straits, I knew I had stage four of any cancer is not good, I understood that, but I really just wanted a team - I had three opinions before I finally settled on the hospital that I went to, and the reason why I settled on the hospital that I went to was because their motto was, "Everybody's curable." And even if I wasn't, I wanted to think I was. And I remember telling my son, "I know I'm in dire straits, and either you're with me or you're not, and I am gonna be in for the fight of my life, and if you - I can't waste my energy on you if you're not gonna be behind me." And I hear to this day that people don't get enough encouragement. And I'm not saying that you have to - it's a struggle, it's a battle, and I think that a lot more empathy can be given, and I think that, to this - I wish I could tell you there was a difference between 13 years ago and now. And sometimes, the way the doctors convey the message, it's - it can be a little harsh, and people kind of already know it's not a good circumstance, and I wish that they would be, "We're gonna try." We had done a webinar, a symposium down in the Cleveland Clinic in Florida, and the one doctor said, "How do I tell you have stage four stomach cancer?" And I said, "You tell me I have stage four stomach cancer, but then you tell me, I'm gonna fight with you. I'm gonna be behind you every step of the way, and we're gonna try everything in our power that is feasibly reasonable to get you to be cured." And I just think that sometimes the health care team needs to have that oomph behind them to put the oomph behind the patient, and I'd like to see that more even today.

Dr. Samuel Klempner: Great points. We can all get better about that, [00:12:00] I can certainly say that for sure. I'm gonna come to Christie and then to Julie, so a little bit different question. Sometimes there's this window of time where patients may hear from their, often, GI endoscopist saying, "This is a diagnosis of cancer," but there may be a window between that and when you get to your oncology visit. So did you do anything - did that happen to you, and did you do anything to sort of prepare for your oncology visit? Did you come in with questions? Had you guys done a lot of reading? And what was helpful, if anything?

Christina Leonard: So we had an endoscopy on Thursday, I got a call Friday saying, "See the doctor on a Saturday," repeat endoscopy on a Monday, and we were at Duke within ten days, meeting with one of the top surgeons in the country. In that time, I did a lot of research on the internet, which I do not recommend. What I'm - one thing that I'm really grateful that I did do was I asked all the - well, my youngest was 18 months old, so he didn't really have any questions, but I asked my other four boys, "What questions do you have? Take a piece of paper and write down all these questions that you want me to ask the doctor." And then I wrote down questions and then Tony [ph] wrote down questions. My 13-year-old - or, excuse me, my 15-year-old wanted to know if his dad was gonna be able to ride roller coasters again. Those were the questions that were really, really important to them. Tony wanted to know if he was gonna be able to have a beer. These - and looking back, it wasn't - their questions were all like that. Mine was, "Well, how much time do we have?" And, "Did we catch it in time?" And all of that stuff. But I look back and that wasn't what was important. The treatment options, from my perspective, may have been important, but for the family, it's, "How is the treatment diagnosis going to affect our quality of life?" And balancing that. And those questions of - our surgeon was phenomenal, he answered most of the questions, so when I pulled out my little loose leaf paper and asked about the roller coasters and the beer and things like that, he actually chuckled and said, "I don't see why you can't ride roller coasters, but let's recover from treatment first." But I definitely feel it is important to incorporate the whole family unit in treatment decisions and questions and surgery, and things of that nature.

Dr. Samuel Klempner: I completely agree, so I'm gonna come to Julie, who's guided and thought a lot about this situation. So people come in overwhelmed, where do you, one, see your role optimally getting started, getting to meet patients? Is it early? Is it after? And then, what kind of things [00:15:00] do you - have you found helpful to sort of ease or complement that discussion around the initial diagnosis?

Julie Larson: Well, I found that everything that Melani and Christie are saying makes a lot of sense to me, and I'm hearing that and I support my clients in that process too, making lots of questions and feeling organized and grounded as you walk into those appointments. Understanding what things are - what values and what needs are incredibly important to you as you kind of live life with cancer, so that riding roller coasters and finding time to go out with beer with friends, those things matter too. So how do - "What am I gonna lose? And how do I maintain a sense of normalcy through this?" So that's a process in that. I often say to my - to people I work with, "This conversation, this appointment that you're gonna have, this isn't a one-shot deal. You can have - you have an ongoing - you are building - you have an ongoing relationship with this team." And so perhaps, one of the most important questions that you wanna ask that day is, "There might be something that completely slips my mind in this moment. I am bound to think of an incredibly important question as I walk out of this cancer center today. What do I do with that? Who do I call? How do - how quickly will you get back to me? Is it better for me to put something in a portal get - how can I expect to connect with you?" So that might be an important question for people to ask, because something might hit you at two AM in the morning, and you jot it down, and then you wanna know, "How do I get back in touch when that appointment has passed?" You asked when do I meet with people. To be very honest - so I have a private practice, I am not based in the cancer center, but I would tell you that the majority of people that come to meet with me don't come when they're newly diagnosed, are often not coming when they're in active treatment, because that's a time when they're surrounded. They're surrounded by a supportive team at their medical center. A lot of friends and family really swoop in at that time. And people often feel like they're in the trenches and they're following directions, and they're one foot in front of the other. And a lot of times, people show up at my door three, six, 12 months after, and they're, "I'm done with treatment and I thought I was gonna feel way different here, Julie, and I don't. And I'm looking at myself, what just happened? And everybody else is done, and it's real quiet now. And even my loved one, even my spouse is moving on, and I don't think they're getting that I'm not quite in this place." And so I think that I need people with the mental and emotional [INAUDIBLE] often after treatment is done. And I think we're so focused on getting through treatment that the hit of that doesn't happen until, often, later. And that's normal.

Melani Vincelli: Can I just say - I'm sorry. Julie, I have to tell you, I tell everyone I was preparing myself to die. No one told me [00:18:00] how to survive. And I think the problem is that I'm still a viable part of society, and even though I can't work anymore, I'm still a viable resource, I'm still - and I've found my niche. I'm extremely lucky to have found my niche, and I love what I do to help others. But no one teaches you how to survive. And I think I read somewhere there's 30 million cancer survivors in the world, and every one of them has a certain - something they could give, and I think it's just really trying to find that - what you can do, which makes you feel whole again. And I think that's where you really come in handy, because I can tell you right now, here I am, 13 years later, and no one told me how to do this.

Christina Leonard: I just wanted to chime in real quick. So we were in therapy after the fact, and then his cancer came back, and we were still in therapy. Thank God. Because when he passed away, we already had the family unit involved in therapy, so we were able to continue after and we were able to move forward as a family, and I just - I think they should give you a therapist right out the gate.

Melani Vincelli: I agree. Totally agree.

Julie Larson: A lot of times, people are waiting for the crisis moment to reach out to a therapist or to reach for support. "Gosh, I am in over my head and I'm really struggling, or I'm finding that my feelings are very fragile and on the surface and tears are right there, and I think I need to reach out to somebody." But I would say, reach out to somebody because this has been a big thing that's happened in your life, and understandably so, it's going to impact your sense of your identity, your relationships and connections. And sometimes, when we connect with somebody when we're not in crisis, it just kinda paves the way that that relationship has started, and then when you are in crisis, it's easier to know where to turn.

Dr. Samuel Klempner: Speaking of where to turn, it's a great transition. And I think we, as physicians and surgeons and everyone can be better about normalizing the fact that it's actually a minority of patients after gastrectomies and esophagectomies that can actually go back to work. It's a life-changing thing, and it's the minority of people that get back to full-time jobs, even though they may generally be able to do components of things, and as you've said, be very active in society. So we talked about this transition time, and maybe we'll go around and ask - friends and family always wanna do things to help and it comes from a good place, but what things actually were helpful during this? Some people don't know exactly how to help as family and friends, so what was helpful during your journey, Melani, as a patient, Christie, as a care [00:21:00] giver, and then I'll come back to Julie with a slightly different version of the question.

Melani Vincelli: As you can tell, I'm a talker. Everybody that knows me, knows that I talk, my mother used to say the door in my mouth open at the same time, I wanted to have conversations that nobody else wanted to discuss because I was being told that I wasn't going to make it. And I had very few people. My husband included, my husband did not want to hear it. My parents were alive at the time, they did not want to hear it. I had one close friend that I could actually say to her. If something happens this is what I want. Or if something happens, this is what's going to happen. And she would just take it all in stride. And let me talk because I would cry in the shower because I had nowhere to release that pressure, that feeling I had, that I wasn't going to make it because everybody wanted me to be strong. I had to be strong. I couldn't let the emotions take over. And I think everybody needs to find [INAUDIBLE] therapist. It's not going to be your caregiver or your loved one. I'm telling you right now because they don't want to hear it because there are as afraid as you are. But I had an outside friend who let me talk, let me discuss any of the possibilities that could have happened. And let me go there and never ever said, oh no, no, no, you're going to be fine. Oh no, no, no, don't talk about that. We can't talk about that. You got to be strong. Let me go. And I really appreciated that.

Dr. Samuel Klempner: And Christy your take on what was most helpful from the outside?

Christina Leonard: Company. People just coming over to hang out. People that just showed up to mow my grass, that didn't expect that just because I had five boys that they were going to get out and do the yard work all the time, because maybe they just wanted to hang out with their dad. Melanie sending paper towels and paper plates and toilet paper, like huge, because I don't want to do dishes when all this nonsense is going on. I still have gift cards to this day that people sent because they didn't know what to send. Whenever Tony was in the hospital, people used to send me Starbucks gift cards because there's a Starbucks at Duke and they take there and I lived off Starbucks for seven years. But I think the big thing was company and people that would be willing to take my kids for the weekend so that Tony could get a break too, and I could get a break. People just don't know what to do and I encourage people to just show up, just show up. And circling back I would call Tony's best friends, and I would tell them [00:24:00] like, hey, come over. And they're like, well, I don't care, you need to come over and they would. I'm not going to get into the whole male-female thing, but guys like- I've boys, so I can say this, guys don't tend to have those emotional conversations with other guys or come out and just say it. So I would call his friends and be like hey, why don't you come over tonight? And they would come over and they would just go sit in the bed with him. And matter of fact, two days before he died, all of his best guy friends came over. The Patriots were playing, the Kansas City Chiefs in Super Bowl playoffs and it was like the best day ever for him. And he told them things that I didn't know, and things that he wanted after he was gone. And it gave him that opportunity. So from a caregiver perspective, yes, I have needs, but it's also advocating for the emotional support that your loved one needs and not being afraid to say that.

Dr. Samuel Klempner: I think you bring some really good points. So, Julie, I'm going to turn it around a little bit to you, which is obviously this is a very stressful time for caregivers and I do see some of the questions in the chat, which we'll get to I think this will address one of them. So what can caregivers do to take care of themselves? And how can they help themselves? Are there tools? What do you tell patients and caregivers?

Julie Larson: How long do we have? I could go into this for a long time and talk about so many different strategies and so many different things that would be normal and probably helpful. I'm just going to kind of focus on a couple of different things that I recognize seem to really resonate with my clients. And that would be, I challenge all of the people that I work with to begin to cultivate a habit of checking in with yourself. We are always busy. We are in a fast-paced society and culture. And as a caregiver, it's even more busy and there's so many plates spinning. And so you can put blinders on and just be go, go, go, go, going, and we don't even really recognize how we're doing. So I say to people, let's start by cultivating a habit of checking in with yourself. What do I mean by that? Just, can you, at certain moments in the day, just kind of stop and how am I doing? How am I doing? I'm feeling impatient, I'm feeling dread, I'm feeling worry. And you hear me naming the feeling. And there's a huge benefit in that tiny little task of putting a word to what we're feeling, because suddenly then we aren't the feeling. We are feeling the feeling which creates a little space. And in that space, we can make a choice for how we care for ourselves. How am I doing? I'm feeling pretty impatient. I'm feeling overwhelmed. What am I needing? I'm needing to make a list of questions. I'm needing to talk to somebody that is co-grounding [00:27:00] and is calming to me. I'm needing to put on some music and dance around my kitchen. I'm meeting to get everybody out of the kitchen so that I can scream and be alone. Then in that moment, we can kind of begin to figure out what the heck do I need in this exact right now. One other and then I'm going to let you kind of keep moving, keep the conversation going. But one other strategy that I know really works for a lot of my clients when they're in a state of just feeling flooded and overwhelmed is as you get better at this process of checking in with yourself, there's some value sometimes in bucketing, our thoughts. And what by that is, is this a thought that is about my right now, is this thought that is kind of spinning in my head about something in my perceived future that is scaring me and is feeling overwhelming or is this thought that is kind of sitting on my heart right now about something that I wish I would have done differently are, is kind of bothering me from the past. And that if you can get into the habit of saying, OK, that's a past thought, that's a future thought, this is where I am right now. And you can maybe give yourself permission to leave your future worries to your future self. And sometimes that feels really nice to be able to say, you know what? I see you, I'm not minimizing or dismissing that worry. I get it. There's nothing I can do right in this exact right now. So I'm going to leave that worry to my future self, and I'm going to deal with it when I get to that point. And sometimes that can be really calming to.

Dr. Samuel Klempner: Julie, there's a really quick question for you in the chat about to just reintroduce yourself. There's a couple people that joined late, just reintroduced.

Julie Larson: Who is this woman? My name is Julie Larson. I'm an oncology and therapist. I've spent 17 years working in oncology supportive care. I began my career at the National Organization Cancer Care where I developed and then directed their young adult program. I now have a private practice and I speak all over the country around coping with cancer diagnosis.

Dr. Samuel Klempner: Awesome. Thank you. And then there's a question, and then I'll get us back to some of the questions we had come up with ahead of this. But there's a question about why isn't someone in your role is standard of care part of the team.

Melani Vincelli: Totally agree.

Dr. Samuel Klempner: [CROSSTALK] my own 2 cents, which is it should be, and I just learned not that long ago about the sort of staffing ratios that our social workers and our cancer center deal with. It's like one for every 50 to 100 patients or more, which is terrible and that's how it is nationally. There's just a shortage and same for dietitians, we would love to have staffing to have one dietician for every 50 patients or whatever, but it's 500. It's crazy. [00:30:00] So I think it's a very good question. And was it part- I forgot to ask the Melanie and Christy, wasn't part of your team right from the get-go, was it suggested, was it offered? I know Christy, you mentioned you and your family, kind of must-have sought this out in some way. So how did you guys get there maybe Christy and then Melanie?

Christina Leonard: So when Tony was first diagnosed the therapist actually was part of our program and it was phenomenal. It was asked do you want a therapist which is why I rave about the institute that we went to. And we could have continued the support even with the new beginning and the after however, driving an hour and a half every day once a month or whatever, it was kind of challenging with the kids' schedule. So I needed to find somebody local and just to be completely transparent. And I know Melanie knows this very much, but about six months prior to Tony's, reoccurance showing its ugly face. I went through a really hard time wondering how legitimate Tony's pain really was. And none of the doctors believed him. They all just thought he was asking for more pain medication and that was causing more problems and things of that nature. And I started to believe the doctors rather than listening to Tony. And it was really, really rough time for me. So I started to sought out family therapy because we needed to figure out this new normal and living with chronic pain and what that looked like. And then it was cancer. I did, I sought it out. And then all the doctors were like, [INAUDIBLE] and say, Christy, we already know. I'm like, you want to hear my spiel? They're like no.

Julie Larson: [INAUDIBLE] I appreciate that you were advocated for your needs to be met. And you reached out for [INAUDIBLE], I think when we think about it being part of standard care, I think we need mental and emotional support to be part of standard care. Maybe it comes from an [INAUDIBLE] therapist, but maybe it comes from that incredible nurse that isn't in chemo infusion. Or maybe it comes with the fact that your oncologist or your surgeon sits with you and normalizes that this is really scary and it would make sense to feel overwhelmed. And it would make sense to feel alone in this, what you're feeling is understandable, that is also intervention. So it doesn't have to necessarily come from a trained mental health professional. But if all of the folks in the team are recognizing, hey, our patients are not only dealing with a diagnosis of cancer, but they're also dealing with a mental and emotional impact to this. [00:33:00] And we're all watching for that, then you get the support you need, or at least the beginning.

Melani Vincelli: And in my case, 13 years ago, Dr. Klempner you know having your stomach removed, totally, I should have had therapy after that because it's a new kind of normal and your plumping is all rewired. And now you have to learn how to live a totally different way. And 13 years ago, and even today, I tell everyone, get yourself a good therapist that understands cancer. Even today it's like Godspeed, be with the wind, go ahead, go live your life. And it's like what do I eat? Where do I go? A dietician for a person that's had a total gastrectomy should be automatically assigned and a therapist because it's a new kind of normal. You would go out to dinner with me and not know that I don't have a stomach, but internally it's churning. So I think it's something that should be given to everybody and like you said Klempner so eloquently, there's not enough of their patient resources out there to fulfill the needs. Even when I was going through what I went through, I have neuropathy from my treatments. I wish somebody would have suggested any kind of holistic acupuncture, no one even suggested acupuncture to me. And I really wish that had been suggested because I think there's a good meld between holistic, and regular everyday medical stuff, nobody even bothered to mention that to me. And I think that a lot more talking needs to be done. And I think a lot more discussing of the caregivers. I always say my husband had it worse than I do. And I'm going to tell you why everybody was in his ear telling him I was going to die. Nobody told me I was going to die because I told him, I didn't want to hear it. I am physically and mentally changing before his eyes. I'm bald, I am sick as a dog and I lost 80 pounds. And that man is trying to believe me, the only voice of reason saying I'm going to make it. And everybody else's telling him I'm going to die. So yes, the whole family needs to be treated.

Dr. Samuel Klempner: I totally agree. I'm going to jump in and just take this one question from the chat about little bit different topic, which is, do you know if you agree to be part of a clinical trial, does it decrease your chances of getting other types of treatment beyond chemo? And I could say complex question, in general, the answer is no, participation in a clinical trial may impact the sequence of things that you can get, but there's always going to be things that can be done after a clinical trial. And we basically can always find a way to use our standard agents. Clinical trials are a great tool to advance the care. And I think I'm a strong believer in them. And I think many of the people here probably are as well. [00:36:00] But, no, it's generally doesn't cut you off from other things, which is a common fear but not usually true. So I'm going to bring it back now to this conversation about support both internally and externally and you guys Christie and Melanie obviously have been involved in Debbie's Dream and started your own chapters. And so what did you look for in that therapy or in that support group? And did it exist when you were dealing with it or did you kind of make it exist by starting some of these chapters and the work you're both doing? So maybe Melanie start out with, what did you look for in a support group or support structure more broadly, and did it exist and if not, did you make it exist or did you find it somewhere else?

Melani Vincelli: When I was going through my journey 13 years ago, the only people that understood what I was going through were gastric bypass people because they basically had no stomach. They didn't quite get the full journey I was going through because of course, they didn't have the chemo side of it, but they understood the problem of eating. I had nothing available to me 13 years ago. I vowed once I met Debbie that I was going to make a difference and I was going to help others get through this because I had no one to talk to. I had no one that got it. And as Christy says, we're a family, you can tell Christy and I have been together forever and she's my sister from another mother. I'm probably more of her mother but anyway. I made it my part that since I survived this horrific disease that I was going to do everything I could to give back to the community, because if I didn't learn anything through my journey, then shame on me, and I learned that people need to hear from survivors and they need to hear from caregivers and they need to hear from anybody that's gone through the experience to know that it can be OK and that you can thrive. Yes, I'm different. Yes. I'm missing body parts, but I travel. I take care of my granddaughters. I'm retired. I have a wonderful life and people need to have that validity as many times as I can give it. And so I kind of paved my own way because I knew it was lacking and I do everything in my power to make sure that I get the word out as much as I can.

Dr. Samuel Klempner: And Christy similar question, obviously we don't want to put the burden on patients to build their own support structures like you guys have done, but when you started [00:39:00] wasn't there, obviously you mentioned therapy was available to you, but more broader support groups of other people going through similar experiences was, did that exist.

Christina Leonard: So it's funny my son who is now in is now 21 when he was 12 wrote our federal state senator and asked why stomach cancer was not a cancer that was popular and heard of, and I was also reaching out to Debbie Dream just looking for another wife who dealt with a husband going through this. And Debbie had reached out to me on Facebook messenger. And I literally was like, oh my God, the CEO, Debbie, I gets freaked out. And she actually- I told her about this letter and she actually invited Tony Knights to the very first advocacy day on the hill 10 years ago. Was it 10 years ago? I guess, 10 years ago. And so there was just a few of us, there was 20 of us and we were sitting around the table and we were just very tight-knit group. And so you didn't say no to Debbie, that just didn't happen. And she was like, so I'm thinking you're going to start a chapter in the North Carolina East. And I was like, OK, so that was how that happened. But I got in touch with so many other caregivers and unfortunately, the caregiver pool seemed to get smaller and smaller and smaller because as the husbands or wives were passing the caregivers weren't wanting to stay in the picture. I totally get that now. So for me, the beautiful thing about the chapter is we're able to honor legacies, and we have some phenomenal hospitals in North Carolina. We got Duke, Chapel Hill, Wake Forest right there. And I'm still in touch with Tony's team. I still get to kind of see what's going on and send people that way. Because for me it's not just about caregiving through the journey, because I'm always like make sure when you're scheduling those doctor's appointments you've to scheduling something for yourself. But it's also making those memories, making that bucket list and getting in touch with organizations that can help you do those things because the truth of matter is none of us are promised tomorrow, and we chose to make memories and do all these things that we wanted to do. And that's what we get to do in our chapter. And those things that are offered in North Carolina they may not be offered in other states, but we were able to take- just the chapters as a whole right. We have so many different perspectives. We have children, we have wives, husbands, [00:42:00] grandparents, coming from all different parts of the journey that were able to come together. And that's why Debbie's dream offers what it does because we actually listened. And the chapter leaders brought that back to the table like the state planning, I never even thought about state planning before Tony's cancer came back was a car accident that made me think about state planning. And nobody told me, hey, it's a will, you can rip it up whenever you want, if you feel changing it. And I was like really? I didn't even know that. So it was just kind of all these things. So was I thinking, should I start a chapter and should I start support? No, it was told to me, and I'm so grateful that she did because we just had our eighth annual golf tournament, which raises money to send and sponsor patients and our caregivers to Capitol Hill. There's another family in North Carolina that honors their mom's legacy by having a scholarship in her name for kids whose parents have been affected by cancer and they do a rotating scholarship and it's awesome. And then we have another golf tournament, we love golf in North Carolina if you haven't figured that out. But there's another golf tournament offering for another family, so it's honoring the legacies as well. So it's a balance, it's both, it's getting them at the treatment hospitals and then also the hospitals having that advocacy, we can't offer everything. So do we go to, and they send people to Debbie's Dream and I don't know that was a whole lot, but-

Dr. Samuel Klempner: I have a quick follow up and then I'm going to come to Julie after I answer one question in the chat, and don't feel obligated to answer this question because it's not easy one. After Tony passed did you need some time before getting back involved in this? It's a reminder obviously, but it sounds like you've turned it into a positive, but did you need to disconnect for a while, or did you immediately lean on this structure that you built? And again, if you don't want to answer don't.

Christina Leonard: No, I absolutely am going to answer, because it's not something that people like to talk about. And I think it's something that we do need to talk about because life does go on and it's OK. So as Tony was dying and we knew he was on hospice and stuff, Tony made videos for all the kids, and come to find out he made one for me too. And in his video he said, do not do something because of me. And I knew right then and there, that meant he just wanted me to be happy. He's like I just want you to be happy. So did I disconnect? The fog is real. I can't tell you what happened for the first four months after Tony died. It's a real, real thing but I went to the gala with Debbie Dream about six months after he passed, which gave me a lot of closure, gave me a lot of emotional support. But it was about probably nine months. My best friend was like that's it I'm taking [00:45:00] you on a girl's trip. And she took me to California, and I just started living again and then finding the balance of carrying his legacy for my kids, knowing that I got to be the love of his life, that I got to be his forever. And that brought me peace. Tony and I said, everything we ever needed to say, we did everything we ever needed to do. We renewed our way. We just did everything before he died. So there really wasn't this disconnect if you will, because it was like we completed it when he died. So now it's about the future family. It's about the next family that walks into the doctor's office and they're told there's hope. It's not going to bring Tony back. It's not going to bring Dad back or Brandy or anybody else, but maybe just maybe we can help another family not have the same ending that we had. And my kids, they have to start getting scoped in their 20’s because Tony was so young. So I probably kind of rambled off, but it's a balance, and I'm glad to continue his legacy while living my life, it's important.

Dr. Samuel Klempner: No, I think it's wonderful, but certainly not easy. I'm going to answer one really quick question in the chat about someone asking a specific question about continuing Keytruda with negative CT scans. And so without knowing the details of your case, it's really hard to answer, but I can tell you that in the studies patients were continued for two years, and then after two years, if everything looked good they were given the option of stopping and many patients do and some patients have continued. So it's not written in stone but in general two years is sort of the timeframe. So I'm going to come to Julie now because one of the earlier questions was from someone who is making the connection between this traumatic experience and PTSD, which of course we think of primarily for servicemen and women. But this is obviously a very life-changing event for both patients and caregivers. So do you think of this as PTSD-like trauma, and how do you get patients through it and caregivers through?

Julie Larson: Well, Dr. Klempner, I'm glad that you went back there. I've been taking notes as we've been talking and I saw that pop up there and I wrote it down. So I was going to circle back there if you weren't going to circle back there 100%. In fact, we know in there is research, there's quite a bit of research around the presence of PTSD in cancer survivors and caregivers. In fact, parents of childhood cancer survivors are the second largest group of individuals that have PTSD [00:48:00] after war veterans. So the definition of PTSD is the real our perceived threat to your life are someone that you're close to and a cancer diagnosis is that. It's the very real threat to your life and the experience of beeping noises in the ICU, the smell of different treatments, the dates on a calendar. And maybe it's not the date on the calendar, but maybe it's as the season starts to get cool, and that's when you started going to the doctor. And so when that season starts to get cool and the leaves start to change, you begin to feel off. And that took what we would call a trigger. I worked with a young guy once who was at a bar after his whole treatment. He was with a group of friends who was a young guy and a cocktail waitress walked by with a cosmopolitan. And that red liquid just immediately made him think of a type of chemotherapy that he had had through his treatment. And boom, he was there, he was nauseous, he was hot, he was panicked. And we was like, what happened to me? And that was a trigger. So I'm going to tell you that, yes, I make that diagnosis of PTSD often, the treatment for PTSD is a little touch different than the treatment for grief, and cancer includes quite a bit of grief. We're talking about losing someone that we love, but Melanie is talking about a whole new body and she's lost a lot of who she was before. Not only body parts but the way in which your body works. With grief, we want to talk it through. We want to really go back. We want to explain, and we want to share those stories. And we want to begin to integrate that into who we are today. With PTSD, we need to name it and we need to understand where it's coming from. But then in that process, kind of turn the lights on in the rest of the room. So that in this exact right now, you're able to pull apart from that and recognize that you're safe. So you feel that flush because of the trigger and maybe it's a conversation, maybe it's a date on the calendar. Maybe it's a person, maybe it's walking by the cancer center. Maybe it's waiting in the waiting room. You feel that, and then immediately in that, you've got to begin to kind of see where it's coming from and then get really grounded in where you're safe. And you're OK in this exact right now.

Dr. Samuel Klempner: Certainly an area that I need to learn more about myself. So I'm going to kind of on a somewhat related question about something that Christie brought up, which is sounds your boys were involved early on in probably in the visits and asking some of the questions. And a lot of people have children, and unfortunately, we have too many young stomach cancer patients who often have young children. So how did you [00:51:00] go about talking to your kids about the diagnosis, about asking questions, and were there resources that were there and that were helpful?

Christina Leonard: So we did it twice. So the first time we did it individually which gave the boys an opportunity to react completely however they wanted to because they ranged from 18 months old to 19 years old. 18 and three, they had no idea what was going on. They just knew daddy had a boo-boo and they prayed that daddy's boo-boo would get better. And the second time we did it, we did it as a group. We sat them all down at this point in time, the younger two were older and they asked what stage it was. So they really grew up with cancer. So I sat them down and I said, I want you to write down what questions you have. I don't care how silly you think they are. I want you to write them down because it's important to you. So that's what we did the first time. When we went back the second time, I was a little bit more familiar with treatment. And I said, hey, how long is he going to be sick? Because I got this one that plays varsity football on Fridays. And this one plays, [INAUDIBLE] ball on Saturdays. And I need to know how long he is going to be sick so that we can have somewhat of a decent weekend. So I think that's important question to ask because there's some treatments you go home with and they last for 48 hours. So you get chemo and you have all the steroids, so you could be good for a week. And then week two, you're like, I'm sick in bed. So I think that's a really good question to ask so that you can incorporate whatever things you have going on with the kids. And then ask the kids, and I ask them what is important for dad to be there for, and what can he watch on FaceTime? So that was another thing that we did, senior awards sometimes are watched on the phone.

Melani Vincelli: Christine, you told me that duke also they had something for the kids.

Christina Leonard: So I asked the Cancer Institute as well. I said, do you have anything for kids they did, at Duke so I encourage you to ask if the hospital you're at if they have a program for kids to explain cancer and they did. So I brought my two little ones in, they put Dawn soap in a cup of water and had them blow bubbles in it and explained what chemotherapy was, explained what radiation was with the bubbles, and they played with it. And I felt, and my experience was to be completely transparent with the kids through the entire process because I did not want to deny any opportunity that my kids had with their father. And if that meant breaking all the rules that no longer pizzas in the dinner table pizza could be a bed and that was OK, and the laundry [00:54:00] can wait and all those things. And I found myself, just encouraging that quality time and then saying, hey, noticing the kids were quiet. One of them I said, hey, what's wrong? He said, well, I'm just thinking about when dad leaves, and I said, what does that mean to you? And he says that dad's side of the bed's going to be empty. And that was a hard thing to hear from a nine-year-old child. But it also gave me the opportunity to have that hard conversation with him. So transparency, having them write things down and asking your cancer institute if they can explain chemo to kids, I think is really and break the rules. What rules? [CROSSTALK]

Dr. Samuel Klempner: I'm going to come to Julia in a second. Sorry.

Julie Larson: I was going to add something to that real quick, but go ahead.

Dr. Samuel Klempner: Oh, sure. Go ahead. Go ahead.

Julie Larson: I was going to add that when you're being transparent and when being honest, you want them to be part of that, but underlying that, you are instilling trust, that in this whole process, you want your kids to know that if something big is going on in my family, someone's going to tell me, someone's going to let me on that. You want your kids to trust that they're going to be OK, because we're going to be honest with you all along the way, and we're going to be with you in this. So that also helps them to trust.

Melani Vincelli: Also Debbie's dream foundation we're having a seminar on talking to your kids about cancer coming up in the next month.

Christina Leonard: I'm on that one too.

Dr. Samuel Klempner: We're fortunate enough to have a packed program for families with children as well. And as a provider, it's something that I don't feel like I have a skillset to really be an expert in. So it's great to have another group of people who really are expert in this. So we're really tight on time. So, Melanie, I'm going to ask you a question, and then I'm going to ask Julie follow up. So the question for Melanie is, were there questions that you were afraid to ask and how did you deal with that? And then Julie, is there harm to both the patient and the caregiver for not ask asking questions? And how do you sort of coach people? I know those are both big questions for the last two minutes. But Melanie, if you want to take a shot at questions you were afraid to ask and how did you get up the courage or how did you go about doing it? And then Julie is that a detrimental practice?

Melani Vincelli: Honestly, I was so blindsided by my cancer and it was such a whirlwind affair for me. I was diagnosed in June. I had my stomach out in December. I had six rounds of chemo in between. I had such a whirlwind journey that I never gave myself the time to think about anything. [00:57:00] I worked the whole time. I was going through chemo, how I did that I have no idea, but I worked the whole time I was going through chemo and that was my retreat. That was my happy place I could work. And I didn't have to think about cancer. So I never really had any questions I wanted to ask because it was still kind of a blur. Now as an outsider looking in and having gone through the process, I provide those question to other people because they're so blindsided by what they're going through. I can say to them ask about this and ask if they're going to do this and maybe that's part of the process, part of the piece of the puzzle that I fit in because you're totally overwhelmed because you've just been diagnosed with cancer. Well, here's some of this stuff you can be asking because you don't know this world than I do. Like I said, I do what I do because I didn't have a me, and now I'm a me for other people and I have my finger on the pulse of the community. So I know what they're afraid of. I know what they're asking. I know what the therapies are. So I kind of help them ask the right questions and know, and I think that's really important for everybody to have. I wish that we could have a guide for everybody that goes through cancer, that they had someone that could help them through the journey. I wish that everybody had a Christie. I wish everybody had a me. I wish every kid had had someone to talk to because it's really, really important especially with stomach cancer, we don't have a lot of resources available to us. It's really, really underserved.

Dr. Samuel Klempner: And Julie, you get the last before I, unfortunately, have to close this out. So-

Julie Larson: Make it count.

Dr. Samuel Klempner: How do we- sorry go ahead.

Julie Larson: And here we go. You asked about the detriments of not asking questions or the value in that. I think also another phrase I often tell the people that I work with is there when you're in that medical office, when you are there, there are two experts in that room. There is the doctor who went through years of school and has worked with hundreds of patients, if not more. And they have so much experience, and they're doing this day in and day out and they trained and they went and they learned, and they know a lot to help guide your way with cancer, but they have not lived in your body, you have and you know how you respond to different treatments, you know where pain shows up, you know where stress shows up, you know that you're feeling this in the middle of the night in what's going on and that doctor needs that data. They need that information. And that's where a little bit that empowering of that team begins to play is that a lot of times people feel very powerless or a loss of control, and they're seeking that medical doctor [01:00:00] or medical team to kind of light the way and tell them what to do. But you are very key in this process and we need your questions and we need your comments, and we need those things in the room to help get you the best care possible for you because it's going to be different if for each patient.

Dr. Samuel Klempner: I think that that's a great summary. And unfortunately, we are at a time and if you want to watch this again it's going to be available on the Webinars-On-Demand page of in a few days. So thank you to the panelists and everyone for attending and participating and obviously hate to end this, but this is really a great discussion. I want to thank CURE, Debbie's Dream Foundation, as well as some of the sponsors that really make this happen. That's Bristol, Myers, Squibb, Daiichi-Sankyo, and Merck for making this webcast possible. And so for everyone attending there's going to be a survey coming to your email, so please don't ignore it. So thanks for joining. We'll see you next time and definitely we need to do a lot more of these, so good to see you guys and have a good night.

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