 Program and Jordan is going to talk her title was fear of losing out This has this has been a very interactive session in the past It's really our way of connecting all of us in this room who have a common cause and I'll have Jordan take over Hello everyone my apologies for being late, but thank you for giving me a couple of extra minutes How many of you were here last year? Great about half of you. So half of you will sympathize with the fact that when I was here last year I was pregnant out to here and now I have a 10 month old and so we had a little child care snafu But we're all good now. So thank you for waiting for me So proving my total uncool mom-ness now I heard this phrase this year, which I'm sure is probably so 2012 or something like that Fear of missing out and the acronym is FOMO So people hashtag this and put it on social media and all this kind of stuff But what resonated with me about that in this job is that a lot of what I talked to about patients is what they're afraid They're gonna miss if they don't survive this disease So I look around here and I see a lot of faces that I see that are surviving this disease So maybe that fear is less for some of you And for some of you who are newer into this or in a in a worse place Maybe this is more close to the surface for you But I wanted to talk a little bit about that today and mostly I actually want you to talk about it a little bit today Because you have way more insight into it than I do To think about what are the things that you are afraid of missing? Because a lot of what we talked about in the lead-up to this talk is what are we doing to try and? Cure this cancer to make people live longer to make them live better and so on And so for some people in this room I've heard you say before that you just want to be here long enough to get the cure or to get the next medication Or to get the next innovation But I wanted to dig a little deeper into that today and think about you know What else are we worried that we're gonna miss and I don't mean to go for the cheap You know emotional jab here because the thing that I want us to be thinking about is so if we know Here's something I'm really worried I'm gonna miss because of this cancer and it doesn't necessarily mean because I Die and then I miss the rest of my life But things that are working against you now that make you miss out on things that you want to be doing now If we can kind of identify those things How do we start to tackle them and some of them don't have a clear answer some of them Don't have a thing that just says oh, I'm worried I'm gonna miss this and here's here's what I do to make that better, but some of them do So I want to I always prefer to have in this session time for you guys to talk a little bit with each other about it A little bit of a topic here I know that this is an interactive Conference anyhow and you've been asking questions all day and probably getting to know the people who are sitting around you and Hearing some things about the other people that are here, but this sort of comes at things from a different angle So I know that I don't have that long for this talk today So it won't be too long of a breakout and I don't want people to move around or anything but if you can just sort of Group into groups of four or five just right around you and and think about together What are some of the things that you're afraid of missing because of this cancer? And then we can kind of come back together and maybe see that lots of people are worried about the same things or That people are doing things to combat that fear that we hadn't thought about otherwise So we'll just do five to seven minutes of that because I know that we're supposed to end up pretty soon But if you guys can just sort of clump together and think about this What are the things that you are afraid of missing because of this diagnosis? And then we'll come back together again. Okay Yeah, sure just pull together into yeah, just turn your chairs a little bit or that's completely fine. Whatever works the best I I I I I I I I I I I I Just one more minute here guys I I Let's come back together here. Thank you so much Okay with everybody This engaged. I'm hoping that a few people will be brave and and want to share with our larger group here Okay, let's let's bring it back to the larger group here. Thank you all so much for for jumping into this topic together I Think that you know, I can you guys hear me? Can you hear me okay? Okay Great great, and we have another mic out here so we can pass it around for people So obviously this this topic brings up a lot of emotion Because it makes us think about some of the things that we sometimes avoid thinking about But the reason that you're all here is to figure out how to access things the best you can so that you live as well And as long as as you can with this diagnosis So I think it's worth us thinking about what are your other motivations, right? Not just your body Not just yourself, but probably some other things as well So I walked around and listened a little bit and can certainly share what I heard But I would love if a couple of brave souls might might be willing to say What this brought up for them? And what are the things that they're thinking about when they think about what they might miss because of because of this cancer anybody Don't make me call on somebody that I know from the past You know several years of doing this No one shall I call on a doctor would that help everybody feel more comfortable? Yeah Sandy will you just start us by what what you talked about in your group a little bit? Thank you I think in our group it was talking about Fear of losing independence, you know what that would happen okay, if If illness continues that that would be taken away there was a lot about fear of who we are leaving behind and and How to cope with that right right so so fear for yourself and fear for others and I Don't mean to not acknowledge all the caregivers that are here as well I know that this is a joint effort. So this is you are as welcome to speak as as anybody else here but yeah fear of fear of losing independence fear of Losing identity I think is is a piece of it right independence certainly in terms of you know your physical body and what you're able to do But who you are in the world a lot of patients that I work with you know Struggle with not being able to work or not being able to participate in some other activity That's beloved to them because of this and and think a lot about then who are they when those pieces get stripped away So so fear of of what's gonna happen that uncertainty is really is really challenging and then fear of fear of leaving people I think is is really common right what will happen when we're not here anymore and Depending on our belief system will we know what happens? When we're not here anymore, so definitely I can see that others in other groups further back there Somebody who doesn't work here or is employed or paid by this institution Okay, well then I'll start saying what I heard back in in other pieces of this of this group And I hope that people will will chime in so things about like inability to plan for the future right and Hearing what other people get to do right when I grow old. This is what I'm gonna do I'm gonna go on this vacation. I'm gonna retire. I'm going to Move to where my grandchildren live I'm going to do whatever those things are and hearing the other people around us make these grand plans and Us sitting here saying I don't know if I should even think about those plans or even start to make those plans Because am I just gonna disappoint myself or somebody else? Fear of being just too sick to get the next big treatment, right? It seems like especially probably from what you heard today We're we're always on the verge of something new and big and which clinical trial is gonna be available and all of this and Will I be well enough long enough to access that that's something that I heard walking around the room here, too And then and and the same theme throughout of you know family people that you love And not being here for them or not getting to see what happens to them Which I think also reflects back to not being able to see what happens to you Who are you gonna be? What were you gonna do with the years that that you have however many those were gonna be? And then I already heard some groups in here talking about well, so what do they do to combat that? What do they do and some people are either blessed or Hard enough workers to say well, I've decided that I'm not gonna let it interfere I'm gonna go on I'm gonna pretend that this isn't happening or I'm gonna put it as far to the side as possible And just keep living as if it didn't happen And then I know that there are other people in here that say well that sounds great But how do you do that? How do you put this giant thing off to the side? And is it easier or harder for other people? What do people think about that? You've all you were all chattering just minutes ago I couldn't even get you to stop and come back up. Thank you. Thank you. Oh in a Stanford University sweatshirt, of course But I'm not an employee here or anything fair enough You know, I think It was it was very hard in the beginning for me to accept the situation, you know probably a year ago But and you know, frankly a friend of mine who also went to Stanford, you know Looked at the data and said hey, you know, you're you probably got two years Median if you look at the data pretty daunting. Yeah, so yeah, you know, I'm not that old So I was I felt like there's a lot I could have done maybe or I never thought about not having to worry about what I would do In my life because I figured there's all this time But you know, I think I'm I'm feeling emotionally better now because you know the way I look at it is there's only so many things in life you can control and You know, I think I have a great doctor doctor soon of us. I come to a great institution Stanford no, I'm not paid by any of them. I've been telling you honestly So so there's that, you know, I have been lucky to have a great Support network a lot of my friends, you know from all over have tried to help me in many ways My family has been really great and been there for me, you know, my sister moved here from She seems to have gone to the bathroom, but you know, you're from another another state, you know, my brother-in-law, so So that helps a lot I think having people in your in your in your camp and maybe some of us We're still focused on our career or whatever. We're doing our life that we forgot a lot of people But I've been lucky, you know, I didn't grow up here. So kind of my friends became my family in a way That's that's been very helpful for me I work for a very supportive company where they've been very nice of what organizing my schedule and You know, I've tried to exercise Quite regularly. It's very hard sometimes, but I try to exercise and I think that gives me a lot of energy and makes me feel better I go back and forth between reading things because you know, there are times when I feel really happy and I Took like a biology of cancer book and went through three chapters and then after that I my Yahoo finance or Yahoo Whatever gives me all the people who have dying of different kinds of cancers, which You know wasn't making me feel that good and I decided to kind of shut that off so yeah, I mean, I think it's it's a bit of an emotional roller coaster and You know, I think you there's no real way to avoid that. You know, I'm generally have always been kind of an even-keeled person so for me it's a little bit of a You know adjustment but I think the way I feel like I do the best is when I'm around people that I like and The other thing I try to do. This is not a hundred percent possible is to cut out Negativities and negative energy and negative people from my life if I can Sometimes it's hard because they're family members and things like that, but you really have to That was not meant as a joke Your sister came back just in time for that. That's right. Thank you. Well, don't get divorced or anything Well, you know depending on how you guys didn't laugh at that that that concerns me a little bit but um, but you know, I think in general That that's that's the thing and you know, look I mean, I I look at all the treatments and I hope that you know, I'll have a good chance and you know I have a long-term thing, but you know, ultimately managing uncertainty in life. I think it's very difficult for most human beings I think I Historically, I used to work in a business that was highly uncertain and then therefore may be a little better Position to manage that but today when it's about yourself, you know statistics Kind of have no meaning because you know, it's not a statistical outcome at zero or one for yourself So, yeah, I don't I don't know how it is and you know, again, if somebody told me that hey, you know what you got six months I'm not sure how I would respond to that But I think I would respond that better than I would a year ago, right? So so anyway, I don't know like exercise and be around people you like and and and be Focused on people. The other thing I would say is caregivers people always forget, you know Like I'm the one with cancer, but it's actually really hard for my family, you know, emotionally I think sometimes they're having a harder time than I am emotionally about it So so I think there's there's you know, it's just be a little sensitive to that, you know, isn't it difficult anyway Thank you for being brave and for first standing up here. I Mean you said a lot of smart things in that but I think that the things to pull out are are that I Think that sometimes people tend to be feeling better when they've been doing better for a while, right? So, you know, you said a year ago this wasn't as easy for you and here you are looking fairly well You're able to do a lot of the things that you want to do Maybe even some things have changed for the positive in terms of people in and out of your life and so on And that's something to hold on to right is that during the time that you feel well And the longer you feel well the better we tend to do right the further away that scary part is of just the Diagnosis or or some complication or something like that So we all have that out there for us more, you know that time could potentially come Do other people have have thoughts or things that they that they'd like to share now that you've seen somebody Brave stand-up. Is that a hand back there? Not just a stretch. Okay, perfect. I don't work for Stanford, but you guys pay me I'm actually your agfa packs and x-ray rep So the funny part was we were negotiating the packs deal back in March and at a meeting at the Hems Conference in Vegas With your director of IT. He was an iron athlete and I'm standing in a standing on the booth feel the pain in my side and End up going to the ER in Vegas and that's when they found out I'm See it's it's hard for me right now Yeah Steve um Live in Orange County Three hours away from my wife drive straight to her. Don't know how she's gonna take it She took it pretty well So I'm in the medical field. I know this stuff You know when they when you're when you're in when you're in getting the CT And they order the contrast you're like what the hell's going on I've been in I've been in imaging for years work for a whole bunch of different vendors First time I've ever been in the sales role, but I know what you guys go through what we've all been through Getting the diagnosis and figuring out what's going on when you know what's going on directly and you're in that in here In you're in the scanner and you're like I'm getting contrast you know It's a shocker So who do I go to I go to my friends? I got friends along all over the industry You know some of my best I gave my images to a friend at Marshfield Clinic I gave my images to a friend at MD Anderson. I live in Orange County. Who do they recommend? Dr. Landman down at UCI He did my surgery did a great job laparoscopic t1b Lesson it was originally the CT showed it was six centimeters. So I opted for the radical did the whole thing I'm in the early stages. I'm trying to figure it out, but I'm doing this all on my own Right, so I'm talking to people trying to figure out what my options are Just like you guys, I mean you get the results you freak out. I'm still freaking out Funding a lot nodules in me right now. So what am I gonna do? Who do I talk to? I'm going to see Dr. Palace city. I hope so I'm trying to try to take care of my health care It's like you own your own process. You try to deal with it But what am I I'm afraid of losing my family and I'm trying to deal with it, but You know, you got to keep going. Yeah, and I am back to work. I'm weak as hell But I keep coming back here. I'm in fact I'm gonna see Dr. Gambier at the end of the month to talk about the PAX project and again I'll interject and some of the stuff he does for now for now But it's like you just take those steps again and try to keep going forward, but I'm brand new to this You know, it's only a couple months out But it's great to see you guys and like some people sit next to me They've been they've been through this for 12 years and I'm still trying to figure it out myself So I'm glad to see you guys here. Thanks. Thank you I'm gonna walk back and get that. I think I appreciate this particular point of that sometimes the fear is a little bit more immediate, right? It's not just you know in a longer-term way or in a more Emotional, you know esoteric way. It's it's a real fear about like what's gonna happen to me right now And how do I how do I start to figure this out? And it sounds like you know continuing to rely on Who you have in your life is the is one of the big keys that people are talking about And I also appreciated, you know this that we're trying to figure out What does it mean for me in particular in addition to what does it mean in general and the gentleman before said, you know You are up an end of one right in this in their data pool. You're the only one who is just you and I had a patient That was so angry in a room with me once and she said well the the doctor just walked in here and I asked her If I'm gonna die and she said well, I mean we're all gonna die And you could I could walk out of here and get hit by a bus tomorrow Right I Have to say it wasn't a doctor in this in this group. It was a doctor in a different group But anyhow, and I think that's so frustrating to hear because you say well, yeah, what are the odds of that happening to you? I actually have data that suggests I have a two-year median survival rate You have you know a one of a bajillion chance of walking out of here and getting hit by a bus And so finding that understanding both ways right a couple people have said Thinking about how this really does impact our caregivers around us. We really want to be sensitive to that Definitely, but also the fact that a lot of the fear that you live with some or not a lot of it Some of it you live with by yourself right because it's you And somebody says oh well this could happen to any of us none of us know how much time we have everything is uncertain Live every day to the fullest even if you don't have this diagnosis and that's a lot harder to do I think when you have this sort of hanging over your head, but anyhow, I want to Let somebody else speak there's an old The difference between involvement and commitment the way you know the difference is you look at a plate of bacon and eggs The chicken was involved and the pigs committed Turns out that in fact there's a lot of you know doctors are involved in this thing But the patients are kind of committed to the path going forward And there's a lot of guys out there though that a lot of patients Especially I wanted to talk to the last two guys here if you're not familiar with it There's a group called smart patients for example It's out there that goes on and has a lot of people getting together Talking about their stories or path through this thing give recommendations Tell you exactly all the names of the different groups for the different Subspecialties and the rest of this thing and I certainly hope that if you're freaking out you avail yourself of this It helped me an awful lot to go on and look at some of the mistakes that people had made before asked them particular questions get answers that were specific to my Circumstance and realize I was talking to people that again were committed not involved So if you guys are I just hope you guys are familiar with those particular support groups and others besides smart patients You can talk to about this great well put Thank you for that and I'm gonna be using that phrase quite a bit from now on and steal it right from you In the back there and then we'll bring it up here and we'll wrap and then we'll wrap up after that I know that we're we're running low on time. Yeah, I was just gonna say it's really hard. I'm in the city I'm treated at CPMC and it's very hard to find a cancer support group. I mean There just isn't you know, so I got involved with an all cancer support group at UCSF and I just want to say, you know seek out whatever kind of support group you can find because I'm finding that I mean the good thing about that is that if everybody has breast cancer, they're all come, you know You're comparing chemicals So, you know as a result, we're really talking much more about what's in our head because we live with this fear all the time It doesn't matter your cancer. It doesn't matter even your stage. You're living with this all the time and I There's just things that you can say like your joke or I could kill you you know what I mean There's just certain you know, there's a there's a lot of there's a lot of dark humor involved You know what I mean, but there's just it's great to find whatever kind of support group you can with other people with cancer because Because nobody gets it and you there's a lot of stuff. You can't say it to your kids You can't say it to your mother. You can't say it to your friend, you know So that's just my two cents, you know You know if you can find any kind of group or even a person with cancer, you know That you can hang out with it's a good thing, right? Yeah, thank you for saying that and the same actually goes for for caregivers as well Finding other people who are taking care of or involved in the care of somebody with cancer And I think you you said it right is that it is so hard for people to get it Who are not living it either in the patient role or as or as a caregiver or family member It is so hard to understand and even the most empathetic people and even the people who want the most to understand it Are not walking the path even if they're walking next to you. They're not walking it So thank you for saying that just one more comment here. Yeah Well, I also worked for Stanford, but that was 55 years ago Man, I put some plants out here today. Okay I Think I'll start with one a book. I read that that affected me very deeply was Tom Brocaw talking about his bout with multiple myeloma and It felt very similar to what going through having having kidney cancer because the thing you can't do is you can't You can't plan anything for the future. I mean you can but you can't You There's a you can't count on it. And so you have it's it's a very very difficult thing Now I'm I think I'm older than almost anybody in this room. I'm I just turned 80 and In with that I want to tell you a nice experience. I took 10 members of my family to Europe for a week Because I thought this is an experience that they will remember and They'll get I'll get the use of my money of some of the money and they'll get the rest so But anyway that that that was that was an important thing and I think if I look at the whole timeline of my life I probably should have died when I was four when I was in World a little kid in World War two in London and getting bombed daily, and then I took a ship across the North Atlantic at a time when 350,000 tons of shipping were sunk by the Nazi you boats every month and we survived and And I got interviewed and in New York Newspaper because we'd survived and ended up in Ellis Island, which I thought was a beautiful hotel. So But I have to say that I mean I just had a Setback in my last CT scan and I talked to doctor to the Sandy Sreenivas and I can't I all I can say is that I have not had a more sympathetic doctor in my whole life treating me and I Was feeling very very down yesterday and today I feel better Thank you for sharing an example of something that you didn't miss out on which was this trip with your family and Now you never have to be afraid that you're that you're gonna miss that I know we just have a couple more. We'll take one more comment here. Go ahead. Yes, sure. Go ahead. I just want to add what this gentleman said You know, I was at Kaiser. I had a kidney cancer and I was very worried then they always had six months every doctor comes he says six months then I came here and and Sreenivas became my doctor and She said can cure it We're gonna control it You do you know different than any diabetic or your cancer patient and that built me up From there on I was so confident Then I'm gonna make it and I've been making it for five years So I think these words Well, and let's let's use that same the same thought for for this fear that you're all carrying around Which I know you are to some extent greater or lesser is that we can't cure it But maybe we can control it Maybe some days can be better than other days and some days are gonna be bad Terrible days But some days will be okay So I want to just wrap us up here. I really appreciate you jumping into this with me I know it's a hard thing to think about and I I know that a few of you will walk away Feeling heavier having thought of it So I acknowledge that that this brings things up for people that maybe they've been able to Hold to the side for a little bit of time But I also hope that you walk away with the fact that in this room There are many people that are that are walking this path with you right next to you If I could turn you guys into a support group I most certainly would But instead we'll just have to do it once a year here And to to be thinking about you know Where can you reach out for the kinds of things that some of some of the lucky people in here have talked about the people that? They have the things that they've been able to do maybe not all of us can take a trip to Europe But there are other things that we can do probably That emulate that so that so that we don't miss out on some things Because this cancer could take a lot of things from you, but it doesn't have to take everything And I hope that that's the case for everyone in this room That it leaves you with the things that are the most important if you do need Extra support extra help reach out to somebody here. We can get you connected for sure reach out to somebody wherever it is That you're treated. I know not everybody is here after our stunning Compliments of dr. Srinivas today you all know that you could come talk with her And I'm here as well. So thank you so much for being here. I really appreciate it I have a wonderful rest of your day, and I hope to see you back here next year It's so heartening to see so many returning faces every time I'm here I've been doing this for five years and there have been people here every single year of those five years saying the same Things somebody gave me six months five years ago, and here we are having the same talk again So thank you for letting me be a part of it, and I hope to see you back