 My name is Jordan. I'm one of the oncology social workers here at Stanford. I've been working here for seven years now. For those of you who don't know what a hospital social worker does, I do a lot of logistics, insurance, and transportation, and housing, and then take care of the rest of the person when they're not just looking at your kidney. So our job is to kind of think about the whole person, the whole family that's here. How many of you have, this is your first time at this conference? Oh, the majority of you, this. OK, I know that you guys are lying, because I've seen you before. OK, great, so this is new for most of you. So every year that we've done this, and Sandy said that I've done it for three years, but I've actually done it for five years, because I've come up to the San Francisco version, I always think about giving you an actual talk, a PowerPoint, and some education, and whatever. But that's what you've been doing all day here so much. And really, when I think about it, you guys are the ones with the information about how you're coping, and how emotionally you're getting through this, and how your families are dealing, and all of that. So it doesn't make a whole lot of sense for me to sit here and talk at you for an hour. So we always try and make this more of an interactive session to really hear your perspectives and to think about how we're going to get through the next year until we see you here again. So this year, I was thinking about how we want to frame the discussion. And have any of you seen the musical Wicked? Have you seen it? Oh, a lot of people, OK. Anyway, for those of you who haven't, it's a flip the script on The Wizard of Oz, and it's all about good and evil, and what's really Wicked, and what's really good, and all of that kind of thing. So my daughter, who's two, loves musicals, and she listens to them on soundtracks. Her favorite is Hamilton, but we'll get to it in a different time. Anyway, there's this song in the Wicked soundtrack. And at the end of it, they say, who can say if I've changed for the better, but because I knew you, because this happened to me, I've been changed for good. And the play on words there is, I've been changed irreversibly for good, and I've been changed for good, something good changed in me. So what I wanted to talk about today or have you guys talk about today is this diagnosis, most of my patients would say, yes, it's changed their life for good in the way of it's changed it forever. It's changed the trajectory. It's changed what their world looks like. But only some of them would say that it changed them for the better, that they feel better after this, would say. Some of my patients say, yes, they have a whole new lease on life, and they see things completely differently, and it's a really positive change that they've seen. And some, in their most honest moments, say, no. I really, this really has changed things for the worse. And I am working my hardest to get through it the way that I can, but I wish that this had never happened, and this has made things a lot harder for me. So I want to talk with you guys, and I want to hear from you guys about how this life has changed for good or for not good. So I want to take the chance to have us actually talk together in the group so you guys can turn around or there's not really too many of you here. So you can kind of turn your chairs and get into whatever smallish groups are near you. And talk for a few minutes here about how things have changed permanently for you from this diagnosis, both if you're the patient and you're walking through this in your own shoes and if you're the caregiver walking beside your person through this. How have things changed permanently? Have things changed for the better? Has something good come out of this? And if not, and if we can be really honest, how do we deal with the fact that maybe they haven't changed for the better? Maybe things really are harder now. So I'd love to give you guys a few minutes to talk among yourselves with this sort of topic in mind. And then we'll kind of come back together and share and think a little bit about what we do with that knowledge. Does that sound OK? So flip around, smallish groups near you. Maybe you guys know each other really well now at the end of today. I can kind of divide up there, and I'll just walk around a little bit. Maybe just like 10 minutes or so thinking about this. OK, let's pull us back together to the bigger group here. Thanks, guys. So usually what ends up happening in these small groups is we actually just hear a little bit of people's backstory that you haven't heard before. Or maybe you've been talking over the lunch break and things like that. But you hear a little bit about just what people have been through. And then as we come back together as a group here, we can kind of get back to the topic at hand, which is sure. We've been talking all day about medical innovations and about treatments. And you've had the opportunity to have physicians here that you've been able to ask questions back to, which is one of the biggest things. It's just having the time and that one-on-one ability to say, Dr. Srinivas, I have this question to ask you right here and get it right when you need it. But the piece that we want to think about here is just how does your mind, how does your soul, how does your heart get through either this diagnosis or this treatment or living after it? So if people are willing to share, that would be wonderful. And I'll try not to just call out on somebody. But what's changed? For some of you, I know for a few of you, it's been years. It's been years and years. And maybe what's changed is hard to even remember because now you're in your new normal, whatever it is. And it's just your life. So it's not changed. It's just what you're doing. But for some of you, maybe this is more recent. So is anybody willing to be brave and say, hey, this is what's changed since that day, the day that I got this diagnosis or the day that I had the surgery or the day that I started the treatment? Or somebody want to call me out and say, nothing's changed. I'm the same. Yeah. Yeah. So that's a great question, is why even talk about it, right? And for some people, it's not helpful to talk about it. They just want to put one foot in front of the other. And they just want to get through day by day. And they don't want to dive too much into how their heart and how their soul and how their self has changed because of it. But for some people, just hearing that they're not alone, that people have these emotional responses to this kind of diagnosis. And then to share, how are people dealing with it then? If you are struggling, if there is a struggle in there, in any way, how are people getting through? And the best people to tell you how to get through are people who are also getting through. Somebody like me can stand up here and throw a bunch of coping techniques at you and say, research says, if you do this or that or the other thing, that you will be less depressed and less anxious and all of these things. We can certainly talk about that if you want to. But most of the time, patients and their families tend to benefit from hearing, this is what other people who are walking the exact same path as me are doing to get through and to have the best possible life that they can, even though cancer is gonna be a part of it or was a part of it or is currently a part of it. So the comment here is, isn't it always part of it? I don't know, what do you think? Do you escape it ever? Are you ever far enough away from it that you're not part of it? Are you, do you ever not think about it? Yeah? Not into whatever happens, I have to survive this illness, but also rationally knowing, I want to survive and I'll do my best to survive, but I made that, and what shifted for me was getting to a place of acceptance that this could go up best efforts and with good doctors, hopefully I'm a long-term survival, but my soul has to be open to the idea that I may not survive, and by accepting death there, it's really close, but really reduced my anxiety. I've been able to straddle hope for living and thriving, but at the same time accepting, I'm not in control here, death may be the outcome, that gave me inner peace, and so reduced my anxiety and so now I'm in a better place, but most of the time, cancer is at the back of my mind, but around scan time and how it meets an article are, you know, there's triggers and we get triggers, but... Sure. So there are periods of when it's just back here, not in the form. Right, do you, are you able to pinpoint at all what, when that shift happened for you, or if anything, if you did anything or if anybody else did anything to help you get from six months of pretty gripping anxiety to acceptance? Do you know? Combination of factors? Yeah. That's where things start to come. Yeah, yeah. So you kind of have to like throw out and try a bunch of things to figure out what's the thing that's actually gonna make a difference for you, right? And you know what you brought up things about like around scans, there's actually now like a lingo-y term for that, scan-ziety, right? So, so you know that it can't just be you because every single cancer patient, whenever they're getting a lab draw, whenever they're getting a scan, whenever they're getting whatever, we see their anxiety spike up right before and there's some literature to support that too. So, so that's a great... Can I confess that there is a physician anxiety around scan time too? You can confess that, yes. Every time a patient comes to see us and we, I have to look at the scan, I have to say that our clinic, our heart rates goes up as well. Because we worry about what that scan is going to show for us. Yeah, yeah. So it's, I mean, because we all know it's a critical moment, right? Even though nothing has changed from the minute before your scan and the minute after your scan, there's a critical bump that you go over there. But so I think that a great point to pull out of what you said is, and I don't know you at all, I have no idea how you were before your diagnosis, but you're saying you were never an anxious person before that. You know, maybe your mental health was really quite good before that. So what may have changed is just your experience of having a completely different emotional response to something than you ever have before, right? People who've never been depressed or anxious before, it can really be shocking to have that response when you've never had something to be that anxious or depressed about. So that's a huge thing, right? And also I had a patient that described their cancer, their kidney cancer as a cloud. It's always there, they said, so to your point, right? Does it ever really go away? But sometimes she said it's like way over here, like you can sort of see it in the distance. You know that maybe the storm's coming, but it's really far away and you just kind of go about. And she said sometimes it was just right over her head and just pouring down upon her. So maybe that's the answer is maybe no, it's never gone, but is it further away or closer? I don't know, what do other people think about that? Or what else has changed for people since their diagnosis or since the diagnosis of this person that they care a lot about, who they came with today? So that's because you stopped working. Is that what you're saying? You stopped working after your recurrence? Right. OK. Yeah. Right. Mm-hmm. Right. Right. How interesting that a diagnosis that often people feel robs them of time because of potentially years of life in your experience actually gave you time, the actual hours, minutes, hours, days to do things that you never did before. I heard a statement here about uncertainty about the future. Yeah. Hard to put anything in the calendar because you don't know what's going to happen. Right. Changed. Right. Yeah, it's hard. What changes is that you stop planning things. And maybe what that is is just an extrapolation of stopping hoping for things, right? Hoping that you'll be able to do this fun, good thing because maybe something else is going to get in the way. How do people deal with that? Do you just keep planning things anyway? Do you just keep doing it even though you don't know what's going to happen? You know, I'm glad that that's your perspective. I'm glad that you feel that way because I think that some people get paralyzed, right? How can they plan something three months from now when they have no idea what their next scan is going to say, or are they going to be in treatment again, or whatever it is? But that's a magical thing, if you can say. This isn't going to be the change. Yeah. Yes. Yes. Yep. Right. Yeah. Right. We just don't know what it is. But yeah, you're right. Yeah. Think though. And again, I don't know you at all. Do you think that that's just who you are? Like, do you think that's just who you are at the base of yourself as a person who says, I'm alive today and I'm glad to be alive today and I'm luckier than anybody who's not alive today? Do you think that's just you? Or do you think? Mm-hmm. Mm-hmm. So what do you think? You just do it every day? Right. Right. So what I think about when I hear you say that, though, is I wonder how you do it. Because I know so many people, so many of my patients, that even though they would love to have that attitude, even though they would so love to say, nothing has changed, I continue on as I want to, they're jarred by this diagnosis or by their treatment. Their life is irreparably changed because of it. They don't feel like they can live in the moment and they're terrified of what's coming next. Or just on certain days, they're terrified. Not every day, but some days it rises up for them. So I wonder how you do it. And I wonder if maybe that is just who you are. Like if that is just the soul you were born with. Yes. Yes. Fear of death. Yeah. Right. Right. Right. I mean, I like it. I definitely like it. But I think that you're right that people are scared of dying. Or they're scared of being so sick. Like just feeling terrible. Does that sound right too? That they're just, it's not, sure, death is scary, but also being so sick is also scary. And that has all sorts of other sequelae. How does it impact your family if you're so sick? How does it, is it worth going on if you feel so sick? I think that feeling horribly is also another thing that people are afraid of. I don't know. It's hard to talk about death. People struggle with it. It's hard for them to come out and say, I'm just scared that I'm going to die. It's even harder for people to get to the place that you've said, which is, I might die. I might not survive this. And I can reconcile that. And that helps me get through. What are other people's kind of experience with that? Is there anybody in here who's like, these people are crazy. I don't know how they are so positive and holding on so tightly to this present centeredness. Does anybody struggle with that? Does anybody feel like things have really changed in a way that they're unhappy with? Does anybody sit in here and say they wish this hadn't happened to them? Yeah, right? Right. I mean, it sounds crazy to say that, right? But I think even just admitting that out loud to say, god, this really sucks that this happened to me. I really wish that this hadn't happened, even though I'm still here and I'm in this room and I'm surviving, right? Because you're all sitting here surviving right now, that they don't wish that this happened. Or maybe we have our friend in the back who's like, yes. I'm so glad this happened so that I would spend some time with my family and volunteer and do all these things I never would, but you may be a rare bird to say that. So how do you deal with that? People feel a sense of, sometimes they feel a sense of injustice, right? Why did this happen to me? I've always lived healthfully. I've always done all of these things to take care of myself. I come to this. Say that again. Yes, right? I think the same thing. Right? Yeah. Yeah. Right, and we sit there and we grapple with, what could I have done differently? What could science do differently for me? What could we know different than we do? It's tough, and I think that probably on everybody's best days, they are saying, yes, I'm still here. There's positive here. I'm scared I might die, but I'm happy to be living. But on our worst days, maybe it's just harder for us to find that. So before we wrap up, I'm just curious, what do people do on their worst days? When they're feeling the most down about this, when they're feeling the most pessimistic about what's going to happen, what do you do on your worst days? Turn the AC off. Turn the AC off. Cool off. Just cool off. All right, and then be grateful that you have air conditioning. Right? Yeah? Go to the ocean? Yeah, so go to a place or find a setting that speaks to your soul somehow. Yeah? What else do people do? A beer? That's recommended by a physician now, just so that you've heard that way up here at front. What else do you do? Does anybody just sit in it, just feel bad for however long? No, you pull yourself out. Yeah, sure. It's about politics and everything else. Yeah. Yeah. Yeah. Mm-hmm. Mm-hmm. And I promise that, baby. Mm-hmm. I promise to you, you can't even reflect on tomorrow because that's my promise. Right? Yeah, I've heard physicians say to patients before when they ask, how long do I have or am I going to die from this? Question along those lines. I've heard physicians say to patients before, well, we're all going to die, like you've said. We don't know when. I could die sooner than you because I could walk outside and get hit by a car or be caught in a fire or horrible things that happen in the world. And for some patients, that's really comforting because it reminds them of that point that you've just made of. Nothing's guaranteed. Tomorrow's not guaranteed for me anyway. So sure, I'm dealing with this other thing now that's extra, but maybe it's a problem. Maybe it's not. Maybe I'm going to go before this is an issue anyway. And for some patients, it really pisses them off to hear that, right? Because they think, well, the likelihood that you're going to get hit by a bus before I die of my kidney cancer is pretty small, right? So they feel like, god, you're really belittling the fact that this giant thing has happened to me and is saying, I might die sooner, sooner than I would have without this disease, right? And so it's so hard for us to know. That's why when I do this talk, I want to hear from you guys because it's pointless for me to say, hey, this is what's going to help you. I know it's going to help you because I don't know. I'm getting there, Tommy. But I don't know, right? But you know what works for you better, or you're sitting there and saying, nothing works for me, but then somebody else says something that says, hey, that might work for me. Going back to my faith may work for me, right? Spending more time with my family may work for me to turn this to a positive thing for myself. Yes, sir? I remember distinctly telling people about this situation in which I had made a handshake with the urologist over this job. And then going, ah, man, it's all good. You got it. Do it at 25. Even if it doesn't work out, you're going to be OK. And I was so stressed. And I said, it may be small potatoes, but it's my potato. It's my life. It's my hopes, my dreams. And I know I'm coming from a different perspective with this because I'm not a patient, but I'm somebody who is involved in this disease. And so I want to throw that out there. That's OK. If you're looking at this and you're going, I don't care what these people say, I'm not happy. I'm pissed off. Sure. Sure. If you're a family member, or you're a patient, and you're going, this has disrupted my life. This has disrupted my future and things that I wanted. My hopes and my dreams. That's OK, too. Yeah, it is. And it's OK if you feel that way today and feel a different way tomorrow, or the vice versa. But thank you for the topic of next year's talk, my potato. That will be what we're calling it. Yeah, yeah. Well, the first moment is when this is. Yeah. And that's one moment. Another moment is when I tell myself I want to play with my grandchildren, but I can't get down on the ground anymore. Yeah. And you can resent that. But at the same time, you can have a moment when you say, I better get outside and do something. And so you go play golf. Yeah. And then three days later, you say, I'm going to play golf. And you find you don't have the energy to play golf. So every time something like that happens, the moment has changed. And I do find that you become more introspective with regard to things that used to bother the hell out of you, like cards that would cut you off. And then you say, what the hell? It would take another two seconds. I don't know whether I have the how many seconds I have to have. But it's not worth worrying about it anymore. It used to be. Bless you. Or who could I cut off? Because I'm in a hurry. And damn those other people. I've got to get to work. But you change your moment a lot. Yeah. Because it can't be the same anymore. And I think I've told you, I've been two friends. We've traveled extensively. But I've only got two friends that I've traveled outside the country with without our wives. And one, I've sailed extensively with. And he said to me less than two years ago, you know, we need to go sailing again. We need to get a boat, go to the BBI's and spend a week or two down there. And I said, well said. I said, that's great. Except if the weather is fine, we probably wouldn't have a problem. Remember, this is just less than two years ago. Yeah. And I said, but if we run into storms, who's going to go up front on the boat and bring in the Jenny? Or who's going to lay out the anchor? You know, in stormy weather. Right. I said, I don't know that either one of us can do that. Well, my good friend that said that to me died six months later. He had multiple problems, including bladder cancer. Yeah. The other friend that I hiked out over to Patagonia with in the South America, died not much over a year ago with pancreatic cancer after a very short time. Right. The moment changes so fast. So fast, yeah. And you don't expect it. And I think that your attitude because of that changes a lot. Yeah. You know, I've been working on it for longer than most of my life. Right. But I don't let it stop me from telling it to me in my mind that I want to do something. Right. It's the body that stops you. Right. It's the, you know. Yeah, so. Your mental attitude, say I want to do something. Yeah. And then the family may not understand why two hours later you say go without me. Right. They don't understand that. No. Well, because it's only happening to your body. It's not happening. And, you know, even the people who love you best, right, can't understand what that fatigue feels like or what, you know, what those limitations are. And sure, you know, living in the moment is a great thing to say. In fact, it's an impossible thing not to do, right. Like you are living in this moment, whether you like it or not. The moment changes and your response to the moment changes too. Right. How you deal with those moments, you're right. It changes really rapidly. Other thoughts about that at all? Anybody sitting? Yeah. Oh, sorry. Uh-huh. Yeah. Mm-hmm. Yeah. Mm-hmm. Yeah. Right. Yeah. Yeah. And you're right. For some people, I think that is just who they are. Some of this is about... Yeah. Mm-hmm. Yeah. Mm-hmm. Mm-hmm. Mm-hmm. Yeah. Right. Yeah. Right. Yeah. I don't think of that. Yeah. I don't. And you're right. For some people, I think that is just who they are. This is about... Right. Right. Right. Mm-hmm. Yeah. We need to know your secret. No secret. That's just who you are. Right? That's just who you are. Whatever you can say. Oh, yeah. Great. Let's have a secret. I'll take it. You're the only one. Yeah. Yeah. Yeah. And there's actually quite a lot of research about, like, positive psychology and resilience and that kind of thing. And it is a wonderful thing until something bad happens to somebody who practices that and then they feel so let down, right, by the fact that they say, I was you. You know, they say, I did believe I was going to survive. I did think positively this whole time. I did everything to get myself into a positive framework. And yet here I still am dying, right? It's so hard to reconcile those things. But you're right. Some people just at their base, they don't have to work at it, right? It's just, that's just how it comes. That's just how it comes. You were going to say something too? Yeah. Right. Yeah. Right. Right. Yeah. What? Yeah. Yeah. And I mean, I think that's even circling back to the same point of, sure, if you, you may be positive sometimes and then you may be just really just negative. Like if you just call it right out, you just say, I'm just really negative about what's happening right now. For sure. Yeah. Yeah. Okay. Thank you so much for sharing so openly and so honestly. And I do think that we would be remiss. I'm sure you've mentioned it today, but if anybody has been affected by the fires or knows somebody who's been affected by the fires, you know, where I know that this is an amazingly difficult time for people who are dealing with that or know somebody who's dealing with that. So I hope that your people are safe and that they can rebuild whatever it is that they have lost. But thank you so much for having me here today. Thank you for being here. See you next year if you make it back. Thank you, Jordan. Thank you so much. I want to thank each one of you for spending your Saturday with us. And I hope this was helpful. We are here again, you know, to be a, be thankful to have been a small part of your lives and certainly don't hesitate to reach out if there's anything else we can do. We will, I will ask KCA if they can make all of the content that we have shared with you, with you as well. So thank you again for coming. And I hope you have a good weekend.