Dr. Vicki Jackson and Dr. David Ryan Share Their New Book: Living With Cancer (#129)

Fei Wu: Hey. Hello. How are you? This is a show for everyone else instead of going after top 1% of the world, we dedicate this podcast to celebrate the lives of the unsung heroes and self-made artists. We Dr, Vicki Jackson: hope that, that it helps people slowly integrate this information because it just does feel so surreal to people. You know, people can be really competent and capable in all other areas of their life, but if they've never been through this before, they've got no clue and that it just, it adds. Illness itself is really unnerving, but then the fact that you just feel like you're in a foreign land without a guidebook or knowing the language, um, makes it even

Fei Wu: worse. People get stuck Dr. David Ryan: on a number. I have a 20% chance of being cured. I, I've an 80% chance of being cured Basical. If I saw a thousand patients, that would be your chance of being cured. And if people wanna know that, I'll tell them that. But usually what we try and do is put it in the context of what's the best case scenario, what's the worst case scenario, and what's likely to. And how am I going to give you the best chance at the best case

Fei Wu: scenario, Dr, Vicki Jackson: make sure that we were giving accurate information, and it's something that I think all of us in palliative care and oncology could do a better job asking our patients about. I think whether it's sexuality or whether it's your role. A mother or your work identity, all of these things get changed and often stripped of you. And the question is, how do we help people live in that role and whatever that aspect of what it means for them in their personhood and their life as fully as they can,

Fei Wu: we're Dr. David Ryan: going to experience. An increasingly common way where people are living with cancer for multiple years and potentially dying with their cancer, not from their cancer. And I think I feel more and more like a primary care doctor in that sense, where you develop these long lasting relationships and you're the primary doctor that they go to for everything, and you're kind of dishing off the consults to cardiology and gastroenterology and, um, it's very different than what it was 10 years.

Fei Wu: Hello, it's Faye and you are listening to the Face World Podcast. Today on the show you will meet two doctors, Dr. David Ryan and Dr. Vicki Jackson. Both of them are from Massachusetts General Hospital, also known as mgh. Dr. Ryan is the chief of Hematology and also oncology, and Dr. Jackson is the Chief of Palliative Care. Recently, they co-authored a book called Living with Cancer. Published by the Johns Hopkins University Press. This book is a step by step guide for coping medically and emotionally with a serious diagnosis. Dr. Vicki Jackson appeared on an earlier episode of Phase World. That conversation was a huge hit with people in needs. It taught us that palliative care is an only helpful to doctors, patients, caregivers, but really for everyone today, we have doubled down on the knowledge from two of the most recognized experts in their fields. Bring you a new understanding of how people can live with cancer. We uncover the impact of cancer on people's intimate lives and how to use simple gestures to express the love for one another, or perhaps cancer is no longer thought as a battle, but a partnership. What if we no longer talk about cancer in terms of winning or losing? How will our perspectives and our quality of life change? If you do learn something from this episode, please help share this with others via social media or direct email or text message with a family or a friend. This means so much to us. Yes, I said us. Joining me today on the show is Adam Lard, our associate producer on Face World, whom you've heard from some of the previous episodes. Adam's father, Dr. Robert Lard, was the former chief of the mgh Department of Rehabilitation Medicine. He later became a patient of Dr. Vicki Jackson. I thought having Adam on the show was very special because. He and his family are familiar with both Dr. Jackson and Dr. Ryan's work. Hope this episode brings you hope and insights. So without further ado, please welcome Dr. Vicki Jackson and Dr. David Ryan. You recently released this book and I've been eager to really have this conversation and so my guess I'll start with the first question here. How did you choose and why did you choose each other to partner Dr. David Ryan: on this book? So Dick and I have been working together for many years and we were probably both young attendings when the experiment first started of, of integrating palliative care in the outpatient oncology setting, which. Unfortunately, still is a big experiment. Uh, in most places people think of palliative care as an inpatient focused subspecialty, but it really deserves to be in, should be in the outpatient setting more and more. And so we were, we've been working together for many years and, uh, we've, uh, become chiefs together and we basically came up with this idea for the book because, Um, people ask us the same questions over and over again, and whether it's breast cancer or colon cancer, a lot of the symptom management is exactly the same. Um, and so the answers are exactly the same. And then the other big issue that we deal with is prognostic awareness and how to help people understand that, uh, is a key component of this book. And then the. thing. We wanted to just show people is this the result of this great experiment of integrating palliative care and oncologic care? Uh, so. We talked to each other and, and said, yeah, book would be a great idea. And off to the races we went. It took us about three years.

Fei Wu: Wow. Three years on top of your original commitment to work on this together is Dr. David Ryan: we didn't we thought it was gonna be like a six or a 12 month commitment. We did Dr, Vicki Jackson: not. Do you remember when you were like, oh yeah, let's just like get this out this summer? Yeah. That didn't Dr. David Ryan: happen. No. We, we had no idea, uh, about the whole. Book polishing industry and business and what goes into it and what you have to do to, to make a, a finished product like what we have. Dr, Vicki Jackson: The other thing that was interesting is when we looked there, really surprisingly isn't anything out there like this, there are a lot of books out there about nutrition or about, um, the power of positive thinking, but there really isn't anything that actually. Patient and family by the hand and says, this is this completely surreal process. Let's go through this together. Let me help you think about diagnosis and treatment and the symptoms that come up, and what does it actually mean when the oncologist says X. And do you really have to expect to feel nausea when you're going through chemotherapy treatment? Surprisingly, it wasn't out there. Um, so we felt like it was something there. You know, unfortunately, palliative care isn't available everywhere, and so to have. You know, the hope is to empower patients and families mm-hmm. , um, so they can ask these questions and advocate for themselves and get their questions answered, their symptoms managed mm-hmm. Um, so we just, we hope it's helpful to people. I

Fei Wu: remember even just ask, um, patient, caregiver. For my dad who had, um, pass away due to esophageal cancer. I remember every day, multiple times a day, I have my browser crashing on me because I had so many tabs open. And then this one point you were like, is this a doctor? Is this a patient? And is this legitimate? Is this a trained person? This book, you know, not even so many pages, doesn't feel so overwhelming, contains the information to me. Such a proper timeline is like a one stop shop. Dr, Vicki Jackson: Yeah, that's our hope. I mean, it was actually quite interesting to write because you know, Dave and I can titrate the information we give to someone by seeing what information they want when they're in the room with us. But you can't do that with a book. So it took us many months to get the voice right. It took us many months to think about how do we do this in a way that isn't overwhelming to people and. You know, we had lots of discussion about how should we phrase this, how should we frame this? How do we think about it? Because early on people need this information, but if we give too much too quickly, it, it would be overwhelming when Dr. David Ryan: I, I saw that having, so I met, uh, Dr. Jackson when she was my father's I care doctor as he went through that process and being a doctor's doctor, I'm sure cannot be easy . And reflecting back on the book, having read it, I found that it gave me the same sense of kind of a mo. Huh? That you gave him and that gave, then again, our family. That feeling that a terminal cancer diagnosis is a catastrophe, but at least we ha I felt like there was like this pull through the center of the earth. Like we can hold onto something. Mm-hmm. rather than, than just, like you say, surreal or just being unmoored and kind of flying out into space. Yeah. Dr, Vicki Jackson: I mean, we hope that, that it helps. People slowly integrate this information because it just does feel so surreal to people. You know, people can be really competent and capable in all other areas of their life, but if they've never been through this before, they've got no clue. And that it just, it adds to the illness itself is really unnerving, but then the fact that you just feel like you're in a foreign land without a guidebook or knowing the language, um, makes it even worse. Mm-hmm. . Well,

Fei Wu: I love when you start mention. Almost the branding of the book. The voice and tone coming from my background. I come from digital marketing, so every time we pick up a brand, it's just drastically different. So I started reading the book. There's so many. Points that hit me such as at the beginning, uh, you will write, this is what this chapter is about. You might not be ready for this and you don't have to read this now. Mm-hmm. , and this may be the first five to six chapters, and it hit me to say, I really wish when it comes to many other contents floating around the web that. It could give me that sort of warning so I can actually make an active choice and decision in consuming that information. Um, you know, was this a kind of an active decision was so Dr. David Ryan: our co-writer, Michelle Seton, is not a doctor and, and not a nurse and has written in the healthcare space. , but was somebody who, a, to help us keep the tone correct and to help us with our writing skills. But she also was a great sounding board to say, guys, this is scary stuff. You went too far too fast. Reign it in baby. You gotta rein it in. And we would have these arguments over, what are you talking about? That's like, they need to know this. If they're, if they're talking about shortness of breath, they need to know that it could be a pulmonary BOLs and you might die from a pulmonary BOLs. And, and we would have these conversations and so she. She would have these little warnings in chapters and allow people to not go into something if it was too dark and scary.

Fei Wu: Yeah. We're, it's really interesting to have, um, a second or a third opinion in this case. Mm-hmm. , that reminds me, I mean, how does it make it a successful day to you? Do you ever get to have fun? Dr, Vicki Jackson: What is it like? Oh, it's really interesting, so, . Well, there are several pieces of it. I feel like it's such a privilege to do the work that we do and that we're able to be connected with people when they're going through really difficult times in their life. Right? There isn't, there is no question that this is an important space, and I think also like what, you know, whether you're doing oncology or palliative care, not every clinician is wired to be able to be in this intense kind of space. So even if we can't cure it, Make it go away. We can help partner with people in that space. I think the other piece, which is why I love doing this work, is there is really funny, beautiful stuff that happens that we get to deal with all the time and we get to witness that and that is incredibly gratifying. And I think part of what I always say to the trainees is, you gotta bring your whole self to the. And that if we were heavy all the time and weren't able to like laugh and have fun and joke about things, it would be intolerable and it'd be intolerable for our patients too. So yeah, I feel like it's a great gift and really interesting because I may have all these skill sets, but it's always a new patient and family in the way they're managing whatever it is that's going on. So it is always interesting. Mm-hmm. ? Dr. David Ryan: I would say a satisfying, I don't think I have what would be called a fun day. Although I would say it's, it can be an incredibly interesting and rewarding day. Mm-hmm. , there's the patient care a part of my day, which is fantastic, and the fantastic part about the patient care aspect has to do mostly with your interaction with people and helping them out and having the rewarding feeling that you helped a, a person or a family navigate a serious set of issues in a really. Good way. So that's very rewarding in and of itself. The second piece I would say that's very rewarding to me is the academic piece and everything that goes with it. Like you are watching some of the most amazing breakthroughs happen. Uh, what's going on in multiple myeloma right now is phenomenal, and you get to see that as it's happening and hear the science about it. And so, When I tell you that some, some days you're in meetings and it's like you're going to watch a Nova episode, I mean, you're watching these people talk to you about their science. That's just phenomenal. And their science could be clinical science, basic science, whatever that science is, it's, it's kind of at that level of cutting edge. Very cool stuff. And then the third piece I would say I do like building and building programs and projects that are very patient centered and trying to leave. My part of the Mass General that I'm responsible for better off than what you know. I found it and just improving upon it and being a good steward of the place. So those are three very different, rewarding aspects of my day. The other thing that people who aren't physicians don't quite understand, and I think many doctors who are unhappy in their profession haven't had the experience. The joy that comes from dealing with colleagues. So when you're doing this work, it can be really hard. There's a lot of blood, sweat, and tears sometimes. But on the other end of that, you're doing it with somebody and. Part of the great thing about being in a big academic center like this is you develop relationships with colleagues who you work with for 10, 20, and now 20 plus years, and you have a tremendous amount of joy over those friendships and relationships that you've developed because you've been doing some really hard work together. And I, under appreci. How, um, rewarding those relationships would be when I was a younger

Fei Wu: physician. Mm-hmm. , I so appreciate you, um, answering that question. It just warms my heart and, and I know I almost have to, people are really interested in each other mm-hmm. and in their professional lives. Because to us, especially to my family, unlike, you know, Adam who's surrounded by doctors, to us, your life has remained to be a mystery and we're so curious about that. Dr. David Ryan: One thing that came up with the book that I found interesting was if somebody's diagnosed, and then if it's life threatening, you're gonna wonder is this, is this gonna kill me? What are my chances? And I know that some people are gonna Google it, some people aren't. I can't imagine that I wouldn't. Mm-hmm. Cause how can you, you know, for me, how could I not know? Mm-hmm. . So when somebody looks up, looks it up and says, okay, your prognosis is, What can somebody do with that information? How do they understand it? How does one approach that situation? So that happens all the time. It happens every day and people get stuck on a number. I have a 20% chance of being cured. I have an 80% chance of being cured, basically. Yeah. For a thousand patients, if I saw a thousand patients, that would be your chance of being cured. And if people wanna know that, I'll tell them that. But usually what we try and do is put it in the context of what's the best case scenario, what's the worst case scenario and what's likely to happen and how am I going to give you the best chance at the best case scenario? So in the book for instance, we tell the story of two women that I took care of when I was, uh, a first year oncologist. One woman had a a 90% chance of being cured, and the other woman had a 10% chance of being. . Literally, they came in, it was either the same day or the same week. It was like one after the other, and both of them yelled at me about three or four years down the road. The one who wasn't supposed to relapse, relapsed, and ultimately died, and the one who. Wasn't who was supposed to relapse actually was cured, and they both yelled at me for the exact opposite reason. One of them said, you shouldn't tell people that they have a chance of dying. And the other one said, you should have told me I had a chance of dying. And it came to inform me that. I'm, I was talking about this the wrong way. I was using those numbers in the beginning. Now when somebody comes in, I rarely get to those numbers in the first visit. I might get to those numbers in the second or third visit or fourth, but I rarely get to those numbers. In the first visit, I talk about this is the best chance at the best case scenario, and this is the worst case scenario that can happen, and we don't want that to happen. Obviously some people make the leap and go directly into, well, what are the, what are the odds? And other people say, no, no, doc, just tell me what to do. I want the best chance of the best case scenario. In fact, I would say more, more people than I fully appreciated are like that saying, just tell me what the best case scenarios and I'll go down that road. Whereas me, I'm much more, I'm like you, I wanna know the numbers, and I wanna know like what are the odds of this happening and that happening. I'm kind of more of an engineer like brain, so it took me a while to back off and not give people numbers. And I think Dr, Vicki Jackson: the thing that's tricky about it is even if what you're reading on the internet is completely accurate and the numbers are accurate, you are a person and you are not that number. And so we have to actually help people live with that degree of uncertainty. Sometimes people can survive five years with a terrible quality of life because X, Y, or Z related to the treatment caused a whole bunch of, you know, difficult symptoms. So part of it is a number is just a number. You're a person and we have to help you think about given this illness and who you are, what that likely trajectory is, and how do we help you live with that uncertainty. Because we can only tell you in our best estimate how we think this will go, but we don't know for sure. And so then we have to be partnered with the patient in that uncertainty. You know, the key thing that we can always say to people is, we're not going anywhere. We're gonna help you figure it out, depending upon whatever comes down the pike. And. We'll tell you if we're worried that sometimes we don't, everything looks fine. Like your patient who occurred, you didn't have any data that would've told you to think differently, and if you would've been worried, you would've told them. But they have to understand ways in which we are thinking about this data and what it actually tells us and what it doesn't Dr. David Ryan: tell us. And it's very different from cancer to cancer. So prognostic awareness is something that I think is the hardest thing that we have to convey in our.

Fei Wu: Reading the book. I wasn't, I didn't do it on purpose, but I, I just wonder what is the scope of your writing? And I opened to the chapter that says, um, sexual dysfunction. And I was immediately intrigued because to be quite honest, I never told my parents. But when my dad was sick, and I started to think that, how does that change their relationship? Mm-hmm. , um, what is the premise of a. And I, I couldn't help reading through the entire chapter because not only my parents were, you know, more mature couples, but some of my friends are young couples. They were so intimate with one another, you know, and I never ever asked that question, but it breaks my heart just to know, oh, Schmoop, PPE and all that. And, and the moment it happens, that whole thing disappears and they become, in a way, strangers in that space as I. Reading I, I learned so much and as if the chapter was written by a close friend who called me on the phone, were kind of writing a letter to me privately to say that it's okay to ask. And I don't know. How did you collaborate on, on that section? I think it's kind of daring Dr, Vicki Jackson: too. . Well, it was one of those things where, you know, neither of us are expert in this, right? So some of it is that we had to make sure that we were giving accurate information. , and it's something that I think all of us in palliative care and oncology could do a better job asking our patients about. I think whether it's sexuality or whether it's your role as a mother or your work identity, all of these things get changed and often stripped of you. And the question is, how do we help people live in that role and whatever that aspect of what it means for them in. Personhood in their life as fully as they can. Mm-hmm. . So I think the key piece is in that, like anything else, is there are things that change and figuring out how do you keep the essence of what's important. And you know, it tends to be this is about intimacy. If there's sexuality and there's intimacy, and how do we maintain that intimacy and what does that look like? And then sometimes there are really practical things that you need to think about. But I think in truth, the sexuality piece isn't any different than any of the rest of the things that get so impacted by a cancer Dr. David Ryan: d. I mean, to take it a step up from the sexuality piece, but the relationship to the body is, I think what fundamentally changes in a couple, but it doesn't change in the ways that you think it changes. One of my favorite stories that I, I'll always remember, it was just one of the most remarkable moments that I've had with a patient that taught me about this. I was taking care of this elderly man who was dying of stomach cancer and I had gone to his house to visit him while he was on hospice, and um, his wife was a nurse. They had met up here in Boston. He was an engineer. She was a nurse. They met at a dance like back in the fifties. And, um, then they just stayed together, started dating, got married, you know, started having kids, got too expensive. They moved into the suburbs and raised five kids and, and she was a school nurse at one point, and then in and out of nurse, did a bunch of jobs. He stayed kind of in the same. and then had grandkids and, and he, in his late seventies, gets gastric cancer. And I cared from him over the course of about two years or so, and he ultimately died. And I got a phone call from her and I knew it was bad and I called her right back and, and she said, and I'll, I'll make up his name. Joe just died. And I said, oh, I'm so sorry. And the thing about doing what we do, people will often, you're the only person they feel safe talking to about how. Process went, but I'm gonna relate this back to the body. She goes, I said, well, what happened? And she described how she helped him get up to go to the bathroom and she helped him go to the bathroom and she stood him back up and they walked back to bed and she got him in bed and she tucked him in bed. And then all of a sudden he had some strange noises and, and he just passed out. And then he was gone. He was dead. And so she called the hospice nurse and the hospice nurse was with somebody else and said, I can't get there for another good hour. What do I. And she said, okay, well what do I do? And she said, well, just sit there quietly with him. And she said to me, so Dave, I, I did my last act of nursing. I decided to bathe him. So she bathed him and she put him in her fa, his favorite clothes that she wanted him to be in when he went to the funeral home. And then she said, I'll never do another act of nursing again. And that was the last act that she did. And as she was telling me this story, And it took her about five minutes to tell me how she bathed him. All I could think about was when they fell in love and they were in their twenties and they couldn't keep their hands off each other's bodies, . And then when they're in their thirties and having babies, how the body's different and how, you know, you escape into the bathroom just to have a conversation, and then, and then in your forties it becomes, you know, your first bout with illness often, like somebody slips a disc or needs a gallbladder surgery and how you're helping the other body. Married couple does that, and then fifties, sixties. And here she did, he dies, and the last act is she bathes him. And I thought that's it in a nutshell, that relationship to the body, you know, sexuality and all is. Very different for a couple than it is for an individual who comes in unattached to anybody, but they still have the same issues with Dr, Vicki Jackson: body, and she was really unique in her ability to be intimate in that way. Like not everybody is able to have the strength to be able to do that, but when you can be in relationship at that moment, it's incredibly beautiful. But not everybody. What a

Fei Wu: beautiful story. I mean, this is when I recall, this is a good day of even hearing some of these stories Dr. David Ryan: firsthand. Uh, you know, I, I, I would say it's the best part of our job is getting to know people and, and seeing these stories and seeing these. Interactions play out To me, it's the most, it's the most rewarding aspect

Fei Wu: of Dr. David Ryan: you and Dr. Jackson mentioned, uh, essence, just to kind of like repeat that word. That's the thing that maybe doesn't change. And the relationship at sort of the essence level maybe doesn't change. And then also mention Dr. Ryan about how, what does change, so I won't, you know, make a, make a speech about it, but just to think that's something sort of deeply universal there. Mm-hmm. about all the experiences. Yeah. So from that perspective, having grown up with grandfather, father, sister, brother-in-law, all doctors, you know, when you say doctor to lay people. Maybe it's changed a bit over the decades, but there's a certain image and some of it's accurate and some of it's not. And on the inside I do feel, and I hold myself back in talking to my dad, my brother-in-law, my sister, cuz I don't wanna be that, oh, you know, what's this mobile at the, you know, at the party kind of guy. Or to cross that line when you say, should I do this? Like, just ask your doctor, like they don't wanna get in the middle of it. You can't. , but that said, you were both people before you were doctors, even before you knew conduct. So I have to admit, I'm curious, what have you seen, what have you learned? What is, what has kind of been shown to you in that role that you wouldn't have come across? In some sort of so called civilian life or or non doc life. Dr, Vicki Jackson: I do think sometimes, I think, I don't know if you ever think this, I think if there were a reality TV camera on my shoulder and people saw what I saw every single day, it would just blow their mind, right? Like, there are things, right, like if you're on the inpatient side, the things that you walk into, it's really. You know, some people really have sort of intense suffering that they go through. Some people have intense conflict with their family or with the team. There are all kinds of things and ways that there's like this beautiful, courageous piece, like Dave's story about his patient. I think that, um, you know, what I always say is that the curtain is not opaque. It's very, it's very thin. Like I see. Like, I get it that it is just dumb luck that, not that I'm not that patient in the bed. Yeah. And that something can happen on a random Tuesday afternoon and you can think you're fine and you're not. And so that there's a way that you just see all the stuff all the time. That you know it in a way that I think, thankfully the rest of the world doesn't need to see. Um, but you do have to figure out a way to compartmentalize that and live, have it inform your life in a good way and not be paralyzed by it. Yeah. And, Dr. David Ryan: and there are some specialties that are very. Don't see necessarily what we see. I, I would say for those who take care of this seriously, ill, the one thing, the one constant that separates what we do from generally what the public does, is this constant interaction with death. It's constant and you have to learn how to deal with it and how to interact with it. And you go home and you know, homes, you cross over and you cannot be that way with your kids or your wife or your husband, whatever.

Fei Wu: So the most surpris. Portion of the book. You know, I remember after my dad passed away, I did my fair share of crying, throwing things, breaking things, and uh, going through hours of shredding the CT scan, I remember that moments we got a shredder and just swearing and, and then, um, I, I had a sneak peek into a different way of thinking about cancer through a very young 26 year old, uh, scientist Ryan in Boston. And he talked to me briefly about, um, what if it's something that you could actually live. That's kind of silly. Who will ever think that? And so yesterday I started reading into this chapter of this book called What If We Changed Our Vocabulary? Vocabulary About Cancer Instead of Fighting and Being a Hero and whether you're winning or losing, what if it's a partner in life? And I was thinking, wow, that's like unbelievable. You know, just a single word or sentence or change your per. So I kind of wanna know Dr, Vicki Jackson: your thoughts on Dr. David Ryan: that. It's the fastest growing segment of the cancer population is the folks living with cancer, not in their first year, not in the last year, but in the in between years. And I think that's the, that's the goal really. I mean, we always talk about cure, but. If you die of something else, even though you still have it, you know, you were effectively cured of, of what you had. Right? So I think that we're seeing that more and more. I have patients now who have been with me for 10 plus years with gastrointestinal cancers and their cancer hasn't gone away, but their risk responding to therapy on and off for those 10 plus years. And now with immunotherapy. We're seeing that even more and more. So there's a subset of every cancer that responds incredibly well to immunotherapy. We're very hesitant to use the C word in those patients, but some of them might be cured, some of them might not. Some of them we see relapse after a year or two, but. we're going to experience that in an increasingly common way where people are living with cancer for multiple years and potentially dying with their cancer, not from their cancer. Mm-hmm. . And I think I feel more and more like a primary care doctor in that sense, where you develop these long lasting relationships and you're the primary doctor that they go to for everything, and you're kind of dishing. Off the consults to cardiology and gastroenterology and, um, it's very different than what it was 10 years ago. Yeah. Dr, Vicki Jackson: I would say though, even for patients, if they're diagnosed with metastatic disease and not in one of these new cancers where we're able to say there's a targeted therapy or there's immunotherapy, I think this idea of how it gets framed is actually really important, right? This whole idea of, you know, the war and I'm battling my cancer, even if you have an illness that's going to take your. You have a choice in how you're in relationship with it. It's not something you'd ever want to be in relationship with if you didn't have to. But this idea, I think Dave and I really worry, I think we write in the book about this tyranny of positive thinking. That's my next question. People who really say, if I'm not positive all the time, something bad is gonna happen. And then, you know, there's this idea that if I'm not positively thinking about it, then somehow I've invited my cancer to get worse. Or if I haven't, If I, if I'm not, if I ever talk about if the cancer gets worse, then it actually means that I'm inviting it. And I think the exact opposite is true, is what we see is that if people find a space to talk about their worries that are natural and they say, you know, the biology, it's the biology of the cancer, it's not, you know, if you worry that if you're fighting it, then if the cancer progresses, did you lose, which is absolutely not true. Like it is. It is dumb. It is dumb luck that you get the cancer in the vast majority of places, and it's actually just determinant the biology of that tumor, whether that is going to, you know, the cancer will respond to that treatment, and I do think that the amount of emotional energy that patients and families use keeping any bad. Worry out is exhausting and I think it leads to depression. And so I think we spend a lot of time trying to debunk this. If you are talking about your worries that you've somehow given up and you're not

Fei Wu: fighting. Dr. David Ryan: And in the book you used the phrase negative positive thinking. Mm-hmm. , and I just briefly say, as a sort of skeptical hippie, you know, kind of straddling both sides, that it's a, frankly, a cheap understanding of positive thinking. Which being my age, early fifties, I feel like is a reaction to something that's been long over. Yeah. So those 1950s, whether or not it was really like that, it looked a certain way on tv. Yeah. A stiff upper lip. Yeah. Then there was sixties. Oh, we're all going crazy. Yeah. In the seventies, like super hippie. Yeah. and eighties go, go, go. And that the people who bring that they were trying to do a good thing. Yeah. But we had a guest recently, Emily Peterson. Who, uh, works with yoga of like sexual violence victims or trauma victims, yeah. Mm-hmm. . And when I asked her, I said, get, get through this without, uh, choking out. I said, what does it take, what does it take for you as a, as a person who's been through this to, um, to go through it and what does it take for you to facilitate other people? And the answer shocked me. She said, the ability to be present with that difficulty with uncertainty, with pain. That's right. Not how to get over it on and on. I get into these practices, yoga and other things, they all say every day. It's not about being happier, it's about you're there. The sadness is there, it goes away. Some happiness comes positive thinking. So when my patients are positive, it's easier to deal with them. It's easier to be around. The families are happier in general. So, and there's a choice to be positive or negative. And so when you, when you look at it as a choice, okay, I'm going to be. Then that's great. The difficulty comes, or the bizarreness of what we see comes is when you think the positivity is somehow going to affect the cancer outcome. Like the cancer's gonna shrink because Dr, Vicki Jackson: it's positive and if it becomes binary, right? Right. I'm either only positive or I'm gonna then be negative all the time when the reality is, it would be bizarre if you didn't have times that you were worried. So how do we teach you how to talk about those worries and then go back and just live your. Right. And then let's be super positive. We wanna be positive and hopeful too. But if we would be being bad doctors, if we didn't help people think about what if that, what if the cancer does grow, what does that mean? And how do we think about it? Um, so I think it's a skill actually to learn how to be in both places. Mm-hmm. , um, Dr. David Ryan: part of that way of thinking was stress makes you sick. Yeah. As I get the side, the side eye of, keep it short, you know, those years of worrying, cortisol, hypertension. Death, whatever. So how does that factor into what, I don't put aside what you just said, but how does that factor into what you just said? So biologically. People have asked this and, and they, maybe it's not a great, a great analogy, but the analogy I give is, for instance, if you have colon cancer and you know, everybody, when they get, get colon cancer, after they get it, they say, okay, Dave, I'm going to eat like no red meat, right? I'm gonna go all, uh, veggies and protein and no fats and no animal products. And, and the fact the data show. It doesn't really matter. Once you get colon cancer, whether it comes back or not and you die from that colon cancer, the die has been cast. It's about the biology of that cancer. Your ability to affect that biology by what you eat is incredibly limited. Having said that, 50 years, 60 years of eating poorly will put you at increased risk of getting colon cancer. You know, a stressful life maybe will put you at increased risk of certain illnesses. Um, and there is, uh, scientific data that is valid to suggest this. But once you have something that's once you have metastatic lung cancer or pancreatic cancer, or breast cancer, The ability of stress to impact the biology of those tumor cells is so remote from chemotherapy, radiation, surgery, you know, immunotherapy, that it really comes down to people wanting a, a sense of control back over their lives. Sure. And, and this sense of if you're only positive, dad will be fine. You can't be negative, you know, with dad cuz otherwise Dad will curl, curl up on the couch and die. That ability to control our cancer doesn't exist at that level. Dr, Vicki Jackson: But I would say, I'd even take it a step further that I think, you know what we know about, if you look at treatments for depression or anxiety, it's pretty clear if the much better the meds is actually talking about it. And talk therapy, right? So if you spend your whole time going, oh, I'm only gonna be positive even though I'm having all these worries, you're actually, um, not availing yourself of the best treatment to be able to manage all of those strong emotions. And that So fake smile, isn't it? It ain't, it's not gonna do the trick, right? It's just not gonna do the trick. And then as we've looked at our data more. What's really clear, what's driving the quality of life differences is the differences in the way people cope when they see palliative care early on in the course of their illness. So people who see palliative care are more likely to use some cognitive reframing and to manage the stress. They're more likely to use gratitude. They're less likely to use denial, and that coping piece is what's driving the improved quality of life. So I think it isn't just that and it's not gonna get you what you want. Being positive, it actually could be really, Because it's actually opening yourself up to having a higher risk of having mood disorders and other things that I think do adversely affect how you do with your cancer. Dr. David Ryan: Mm-hmm. , that makes perfect sense also. So we have this other episode that I went back and list to again with Dr. Jackson where she did clearly explain what palliative care is, and for uninformed people, they sort of, I think as a group, feel like it's the thing when you give up and then you have some pain meds and then you die. Yeah. So since that is not the case, could ask you to sort of ree. What is palliative care and why does it not mean, cause you look up in dictionary it. Care that does not address the cause, uh, of the illness, just treats the symptoms. So how is it not that in, in a clear way that's meaningful to people? Dr, Vicki Jackson: Yeah, so it's a great question. I would say my job is to focus on quality of life with patients, for patients who have a serious illness, and that is, The physical symptoms, the psychological symptoms, helping make medical decisions? I think what we know is that there are patients for whom I'm engaged and they may be cured from their illness. They may be getting a bone marrow transplant, but they have terrible symptoms and I'm trying to help them feel better while they're engaged in this. Or they may have treatment that's curative or we think they're gonna live a very long time. It's really attending to this other. That's really important to patients day to day. Um, and that's why, you know, we partner. There's the, the medicine related to the cancer treatment is getting more and more complicated all the time. And there's just often for patients who are really symptomatic and struggling with coping, have young children, there's more work that needs to be done than just one clinician can do. Dr. David Ryan: And you said in the book that people might have an either outdated view of chemotherapy mm-hmm. that, that it's always gonna make them nauseous or tired. Mm-hmm. . Dr, Vicki Jackson: Yeah. And I, I think that, you know, our goal in the book is to have people understand and be able to advocate for themselves and actually know that there are treatments. For all of these symptoms that come up. Sometimes treatments could be really difficult to treat, but the vast majority of the time we've got enough tools in our toolbox when we won't be able to treat you, is if you don't tell us that you're feeling crummy. And it's really common that patients don't tell their oncologist cuz they're afraid the oncologist is gonna pull back or they wanna be the perfect patient who doesn't, you know, complain about anything. Well, you know what? There's no way we can help you if we don't know. Um, so to normalize those symptoms and to have people, you know, the hope is to give people the means to actually advocate for. Um, I

Fei Wu: want people who are listening to this who there are some key takeaways. I, ISA was reading the book and also from the previous episode, um, that Dr. Jackson mentioned that let this seep into everybody's world a little bit. And start to act and to, to live differently. And I feel like, yeah, we may have heard that before, but in this book, the coping strategies broke down. I actually write down, uh, wrote down all of them to realize that I want to use it on, on a daily basis. Mm-hmm. . So distraction, optimism, gratitude, which you mentioned joy, humor, and flow. And we both yoga practitioners, so it's so interesting. I'm martial artist and meditation. intellectualization and problem solving made me think about so differently that we acquire so many these skills in school, maybe at our jobs, but we so rarely use them to actually benefit our own lives and take a pause to say, why am I failing this way? Which category does it go under? It is so Dr, Vicki Jackson: fascinating to me. Yeah. That I think it helps when we think about all the different ways we can cope with things. It's empowering and just can help things not feel so over. This has,

Fei Wu: has been so great and I, I can't believe we've been talking for nearly an hour and Well, Dr, Vicki Jackson: thank you. Yes, thank you.

Fei Wu: Thank you. Hope you enjoy this episode of the Phase World Podcast. My team and I will be thrilled if you choose to write as a review on it. It really helps to get the word out. Simply search for a phase world podcast in your iTunes app. Under podcast, click on readings and reviews tab and then write a review. The star review takes seconds or a brief text review will be fantastic. Two. Thank you on behalf of me and my team from Face World.