 So we're going to wrap up the last. It's a great segue to introduce Jordan who's a social worker Who's going to actually engage us in all of us participating and perhaps telling our story. Hey My name is Jordan Chavez. I'm a social worker with the urologic oncology department here at Stanford I see some familiar faces. How many people is this their first time at this conference? Oh That's good. That's enough of a new audience for me that you won't have heard my jokes before So I got moved into this prime time slot here at the end of your day But I promise we're still gonna get you out of here on time My role here at Stanford and as a social worker is to work on the non-medical pieces of what happens when you get cancer So all day you've had all these talks about What to do for your body the whole you know what research is new and what treatment you can get and all that and The thing that the reason they have social workers here at Stanford is because we acknowledge that With a diagnosis of cancer comes all sorts of other things that have nothing to do with your physical body or your medical Status or anything like that. So that's what we're gonna talk about for this last little bit here Before you guys wrap up because we don't have a ton of time I'm kind of just jump right in and kind of get us started But what I would like to do and I know that everybody hates it when I make them stand up and move around But I'm gonna do it anyway. How many caregivers do we have here? perfect patience other Okay So what I'd really like to do if you don't mind is to have everybody stand up have Patience people who have a diagnosis of kidney cancer come up to this area of the room here and Caregivers friends miscellaneous people who are just here for the food To come to this back corner here. Just real quick. You don't have to Use it in the middle you don't have to bring your stuff. There's no notes. Nobody's gonna steal your phone We'll just move around real quick Patience patients over here Caregivers and the rest kind of in this in this back cluster over there Okay, so what I would what I want to do and what I try to do this is my fourth year At this conference and what I try to do every year here is that you guys have been talked at all day And you've been able to ask questions and that kind of thing But the the truth is that there's a wealth of knowledge and information on how we get through the non Medical non physical parts of this disease in this room here So much better than me giving you a presentation on how to do that because you're all already doing it I want to facilitate us being able to talk about that together. So For this year what I'd like to talk about is the hardest thing What is the hardest thing? About this diagnosis and I want you to think back to the to the moment that you first thought you were sick Through the moment when you found out that this was your diagnosis or your or the person that you're here with diagnosis Through your treatment your surgeries through all of those things and it could be many many many years of this for some of You or it could be Months or weeks. I have no idea who's in the room here, but I want you to think about for a second What is the hardest thing that has happened? And then I want you to think about maybe that was way back five years ago When you got diagnosed in the hardest moment was when your doctor walked in the room with that look on their face And you knew for sure that something was wrong Maybe that was the hardest moment and maybe that moment has long since passed and you've moved on you've done all this other stuff So in addition to the hardest thing that has happened the whole way I want you to think about what the hardest thing is now today this week, whatever in in recent in Recent time and I want our caregivers and our family members do the exact same thing What has been the hardest thing for you about watching somebody go through this about hearing that this has happened to somebody that you Care about about taking care of them and then what remains the hardest thing now And what I'd like to do is just break down no formal way whoever's right around you and just talk for Five ten minutes about within your group what that is and then we're gonna kind of pull it back together because What I'm really interested to hear is what are the things that we didn't think about Being hard that are hard for some people and what are the things that seem to be hard for everybody? And then we'll talk a little bit about how you made it through that and then by that time We'll be done. So I'm gonna circle around just find a few people near you four or five people turn your chairs Whatever it is the hardest thing. That's what I want to know about Okay, I want to pull us back together here. I Hate to stop a talking room. This is a rule that I don't usually break but since time is of the essence I'm gonna stop you guys. Thank you For being willing to share so freely just walking around obviously people have a lot to say a lot of thoughts on this Sit wherever you are is fine. That's fine Okay So the first thing I want to ask is did anybody say anything that surprised you? Or was everything exactly what you would think it's the same as what's hard for you Did anybody say anything that surprised you about what's been hard for them? No Yeah She said that she's surprised as to what I said, so I'll just When I was diagnosed Within a month I had a Procedure at surgery, so I was very quick to try to find a solution but in that interim month Discussing it with my adult daughters They had a different take as to what the solution or treatment or protocol should be they were more of the eastern medicine approach Non-surgical non-western medicine and trying to bridge the gap between the two was difficult for us as a family To get through so that there was a common understanding and and common buy-in to that Anything else surprise you of what what people had to say So so here's the thing I'm not surprised that you weren't surprised right because we tend to worry about the same things And I heard the same words as I walked around and around and it doesn't mean that the experience isn't different for every person That you know feels uncertainty or feels hopeless or feels fear Or feels frustration or sadness. It doesn't mean that that doesn't Manifest differently for each of us, but the fact is that we often use the same words to describe what is so hard about this Would a couple people be willing to share? You know it did somebody in their group articulate something in a way that was particularly poignant or well said about what what has been so hard about this and I and I really do want to include our the caregiver Realm over here too because one of the things that does sometimes surprise us is that what is hard for patients is hard for Caregivers and what is hard for caregivers is hard for patients because we often spend a lot of time worrying about each other So just a couple a couple people who'd be willing to say what has been particularly hard for them You were all chatterboxing like Four minutes ago, which is why I hate to stop people from talking because I know that I'll get crickets after but I know that Somebody's willing to You're gonna make me call on a staff member really? All right, Tommy go ahead So one of the people in our group actually articulated something Very well, I thought he mentioned that his wife Who he has been married to for 45 years has always been very active? and with her on treatment at times she loses that energy and It is difficult for him to watch her not be able to do the things that she previously loved to do And the things that made her really happy and that's a long time to know somebody and to see them Experience their life every single day and then have that suddenly changed. I thought that was very poignant And even we pushed that a step further right and and we look at this person and we wonder who they are You know on some days. They don't look like the person that that we know Or Yeah, so just physically managing just just managing the physical part all by itself Anybody else? Who hasn't already talked for 45 minutes today? Come on one more person There we go. Thank you Okay, okay, um I Had my left kidney removed in October of 2008 and I've Been around the block a few times by now and I've been on all those TKI's I've had a little bit of radiation which I did not enjoy Like it's the hardest thing, you know, it just doesn't go away is the fact that with most kidney cancers and most of us You know, you're not gonna get we're not gonna get better You know, it's it as fabulous as Harry can get around here and And I have a wonderful family and a wonderful husband and I've got everything I need But it's not like if I do everything right. I'm gonna get better and so that You know that realization catches up with me every so often And of course when you're on these medications and you feel so crowing anyway, why am I this is like no fun So that I think that's the hardest because it's hard and hardest because it's not gonna change anybody else Getting brave All right So so let me let me say what I heard as I walked around because I I know that these are words from you and Just to pick up right off that point that there's no cure That's a pretty hard thing and the one of the words I heard was that there that it feels hopeless So as well as we can do we feel hopeless because at the end of the day we this is this is probably gonna be it for us So that's that's a really hard thing Going right hand-in-hand with that right is is uncertainty when When is it gonna stop when is this treatment gonna stop working when is my scan gonna come back bad When am I going to stop feeling better like you feel worse and worse and worse and then you feel better Right, and then you feel worse again, and then you feel better, right? And we do this for months and years when when am I not gonna go back up again? so that's a very uncertain thing and Right along with hopelessness is hope If I can make it long enough Will somebody figure something out? So these are all things that I heard walking around the room here, right? So there's a lot of uncertainty There's a lot of hopelessness and there's a lot of very cautious hope if I can do Well enough if I can follow the research if I can see the right doctors if I can get the right surgery and be on The right treatment I could be here long enough to die of something else or For somebody to figure out something that's gonna help me and maybe it's not a cure But maybe it's the next drug right or maybe it's the next treatment or whatever it is and all those Ibs and all those fancy new things are still new right, so we don't know we don't know what they're gonna be So what do we do with those hard things you just sit around in dark corners with them Don't come out to events like this. What do you do? How do you get through the day? Do you not think about it? Back about a year ago when I met with someone Here at Stanford, they said you've got to start thinking about the disease in a different paradigm You've got to start thinking about Managing it like you manage diabetes you manage HIV you manage some of these things that you could do these diseases You can die of do so That started a whole different Realm of thinking and and how you approach it. I Mean I I have to say I've been lucky so far I haven't gone through some of the the the issues that many people here have gone through But I know that many of them will be Possibly in the future, but there's also a lot of hope So thinking about it as a as a more chronic disease Which is what I heard you just say right something that we can manage over a long period of time and sure ultimately It may be the thing that that it that kills us But that that could be years and years and years away and imagine what we could get done in all that time So looking at it that way as opposed to an immediate death sentence like tomorrow. I won't be here because of this What else do we do what else do you do? What else in the back corner not including anybody who works here do you? You think about other things distraction, right? It's a great technique distraction denial very helpful things to do seriously, right? We think about these as as very Denial is your friend, right? People think of these as like negative coping mechanisms denial distraction We need to accept things we need to confront them. No, we get we need some we need to put our mind on something else sometimes Absolutely, we got to find something else to think about What else I Had interesting ever since I had this cancer. I was given six months accept my doctor here She said nothing's gonna happen to you It's like diabetic Medication control it and not gonna cure it, but medication is gonna control it You're gonna be fine, and I'm being here for five years So so what do you do you get a real stubborn doctor who refuses? Yeah, that's true who refuses to believe that that's the case. What else what else do you do? tight diabetes now I Had a stage four and as of April there's no evidence of disease, so I'm still on the suit nip Which is great, so I feel hey, this is like a second birthday for me So now I'm volunteering for relay. I'm volunteering for AARP for Seminars I volunteered for a camp For foster kids, and I just I'm volunteering for everything. I love it So I've turned something really negative for me into something very very positive It's in fact brought something to your life that it wouldn't that you wouldn't have otherwise Which is that's a hard reframe to make on on a hard day, you know to think oh I'm grateful because now I have something that I wouldn't have had without this cancer But on a good day sometimes we can get there anybody else I Just I just would like to reiterate Tommy's point here that we need to spend quality time with everyone I So one of my family members he doesn't have cancer. He's my dad's brother. He is mentally not stable and This happened for a silly reason that his friends pranked something and then he got affected and he never like Became normal again. It's been like I think 30 to 40 years It's very hard for our family and he lives with us and we all love him We spend we think we spend very cold quality time with him But the problem here is he doesn't understand what we're doing for him Like he doesn't know if it's for example like a kidney cancer or different sort of cancer They understand the quality time they understand what we are doing for them. They live with us, you know They do stuff normal, but if someone who doesn't like Understand what you're doing for them. We see them every day. He lives with us, but he doesn't know what we're doing I think this is this is very fortunate that We are all here and it's important. We need to spend quality time and I personally think Whether I have something or I don't have something Life is too short For me personally, so it's important to respect our family members to understand the value of them and Give you enough time for them. That's my opinion The disease aside Kind of hard to say that here, but that but let's put that aside for just a second We don't know what's gonna happen to any one of us at any time, right? We could get run over by a bus tomorrow So that's live that way. I don't know if that's denial but just live that way live like You're gonna be okay. You're gonna do something good today and maybe you'll get that chance again tomorrow any other thoughts So so one of the things that nobody has said that they do but I happen to know that each and every one of you Do is you you come here? You do this you arm yourself with information you Surround yourself with people who know what you're going through and who care about what what you're going through and you come here And you hear the good things and the bad things And you take away from this hopefully only what's helpful and leave what's not But you engage with your life today. I don't know what you're gonna do tomorrow But I know today you're here engaging about this issue. So I mean, I think that's a huge thing too that you're doing so Basically the point of this session right is to one not surprise yourselves and to know The hardest thing for you is is probably the hardest thing for somebody else in here, too because Cancer can be very isolating even if you have a great family even if you got great friends Even if you're five ten fifteen years out and you're doing great If nobody can stand there and understand that still on some days You're worried about what's gonna happen to you more so than somebody who might just be getting more you know Be worried about getting hit by a bus That can it you can feel alone So that's one of the points is that you're not right and Tommy said this in his talk and this is sort of a theme of Cancer care right is that is that you're not alone? The other thing is to remind you that whatever that hardest thing is you are Living through it. It hasn't stopped you right? And I'm sure that some days are much harder than others and maybe today is a really good day Maybe you feel empowered by all this information and you hear these people that say they gave me six months And I'm here five years later and this is what's happening and you walk out of here because you're and you're you're Energized by that or maybe today is a hard day because it's all in your face Right and all you've been talking about is cancer all day and how there's no cure and how we're doing our best And we're working really hard and we're trying to figure out what to do But we still don't have the answer for you So maybe it's a hard day, but tomorrow might be different and no matter what that hardest thing is for you Even if you weren't willing to share it with me, but we're willing to share it with each other You're you're living through it and Seeing people come back here year after year which I now have had the opportunity to do Tells me that you keep choosing to do it, right? And nothing that I could say in a 45 minute or a 45 hour talk could take away uncertainty You know nothing I could say could make sure that you never suffer another moment of emotional hardship, but You have a place to bring some of this hard stuff and you have a place to bring good stuff I hope that we see you back here again if this is useful for you And if not, I hope that you find your place to bring your hard stuff and your good stuff So that you have equal places for both of it and with that I'm going to wrap us right up because I promised I would stop on time I work here though, and I'm happy to talk with anybody at any point about pretty much anything So you guys can find me here through through the through the clinic otherwise just the fact that you have this resource tells me that you're connected somewhere, so Keep on getting through the hardest thing I guess and I hope I will see you next year Thank you Thank you, Jordan. That was awesome. Thank you. I think we are going to wrap up I'd like to thank a few people as well. I'd like to thank the kidney cancer Association for allowing us and helping us put up a conference like this I want to thank all the speakers many of them aren't here but Tommy and Jordan Thank you for taking the time off your day to come here I'd like to thank my team my admins Stephanie Mems who did a lot to make this happen I'd like to thank Joanne Denise and Shermin who again took their day off to come and help us put a talk like this together But most of all I'd like to thank all of you for coming here without you We wouldn't be putting a program like this and more important sharing your Thoughts with us and helping all of us cope with this illness So I hope to see you all again next year And I hope you all have a wonderful and a safe journey with this disease for what it is. Thank you