From Passenger to CEO: The Mindset That Can Save Your Life | Kathy Giusti - EP 763

27:19And thank God I wasn't working at the time, but they were still holding my insurance. Simultaneously though, I was starting to write in my journal and I always say this to everybody, write down what you need and then write down what you want. And I could see what I needed was to understand like, how is this going to affect my life? Who's going to take care of our daughter? Should we move back east? Who's going to take care of our family? Like, how do I keep everybody safe? So all these things were coming into play, but it was also, what do I want? If I only have a year or two left, what do I want to do with it?

27:53And that was to have another child because I had an identical twin and I wanted my daughter to have that. So I feel like for me, I was urgent. I was going to get all these things done all at once. And I did. I had a child while trying to understand my diagnosis through IVF all by 1997. It was insane. When I would go back and read the journal, I don't know what I was thinking, but I was urgent. At the same time, I start the MMR app with my sister. And next thing I know, now I'm the fundraiser and I'm now an entrepreneur, which I had always been working for big companies. And in that situation, I'm thinking, I'm never going to live unless we find new treatments.

28:37So the urgency was also sitting with me at the MMRF every day. So it didn't matter where I was going, whether I was sitting in my life trying to find ways to make my family safe and to build good memories with my family, or whether I was trying to save my life over here and get to a point where we might find new treatments for my illima patients. Everything was urgent. Everything. I never sat still ever. And so that was highly effective in that I got a lot done. Got a lot done. And then I think what happens when you read the book is having gone back and reading through it, I was like, talk about having purpose in life, waking up every day with a purpose to cure your cancer and save thousands of others while you cure it.

29:25That is purposeful. but at the end of it all when I read the books and all the 30 journals back I realized that level of urgency I was torturing my family I never settled down I was like I think my husband just wanted a little piece in our household it was always like this and so that took a toll on everybody and my single-minded focus somehow I wasn't paying attention to other things going on and I think that became a real reset in my life. What's the point of having purpose and being successful and driving all those things forward if you don't have somebody to share it with? The people around you don't like you.

30:06That's tough to take. And so I had to really do a major reset of my life, late in life, and decide what was important to me. So urgency is an amazing thing, but you have to be careful with it. You know what? It sucks to be bored. But when I get on my phone and play real casino games on SpinQuest.com, the time flies by. That two-hour wait at the DMV seems like 10 minutes. Play your favorite slots. Live blackjack, live preps with a live dealer. New players,$30 coin packs are on sale for$10. Play SpinQuest.com and you'll never be bored again. SpinQuest is a free-to-play social casino. Void where prohibited.

30:46Visit SpinQuest.com for more details. Absolutely great advice. I know another thing that a lot of listeners struggle with is that sometimes they're early signals, but oftentimes you dismiss them regardless of what the ailment might be. And when I talked to Maria Menounos, this was something that she talked about. In her case, she had the early signals and she kept forcing the issue because she felt something was wrong. Oftentimes people ignore it. Were there moments where you almost dismiss what your body was telling you and what do you recommend to people? I was losing weight and I was tired.

31:25I was fatigued, but I was also running worldwide operations for a pharmaceutical company. I was all over the place. And so that level of fatigue, I kept thinking, why am I so tired? But I kept thinking to myself, oh, it's just part of what's going on. So by the time I was getting to this doctor to get referred on to a fertility specialist, I was curious to see what the blood tests were going to show, to be honest with you. And so I guess in some ways I wasn't surprised when they asked me to come back and repeat them, but I didn't think it was going to be cancer. And I certainly didn't think it was going to be a cancer like multiple myeloma that I had never heard of, even though my grandfather had it, I'd never heard of it before.

32:06So I think the advice I give everybody. And this is really important, especially for like people my age where we have younger children, especially because cancer is really affecting this next generation, is that you have to really pay attention to your body. You can, and I, if my kids ever say that there's something up, they're not feeling well, they're tired. I have them to a primary care doctor so fast saying, you've got to get this checked out. And so I think what I always recommend for everybody is have a really good primary care internist, have somebody that's doing a physical every single year, make sure they know your family history, make sure you know your family history, get all of that information input so that you can get screenings earlier if you need them.

32:55And when signs and symptoms develop, make sure you're talking to that doctor about them. And if they're not making this easy for you to get additional testing done, find another doctor. because in today's world where this just happened in our own family where one of my children was having GI issues and everybody just kept saying it's an anxious stomach but it'd been going on for an extended period of time and you can't take those things lightly she had to go in colonoscopy endoscopy getting all the testing done wait she's waiting for results now and you really have to take it seriously. So I'm a big fan of making sure that these resources are available to you.

33:36And a lot of the testing that we're now doing, like by the time that our kids are getting older, it's going to be blood testing. It's not going to be so complicated anymore. CT DNA is like new technology that they're doing so they can start looking at these early diagnostic tests like grail and garden are offering. And I know some people are worried that it might give you a false positive, but, and I agree with that, like you have to be careful who takes these tests. But if you're worried, there are options and resources available to you today that are up and coming that you, again, want to stay in the know about.

34:16One of the things that I've heard you talk about and write about, Bill Potts has written about, Maria talks about is this whole concept of becoming the CEO of your own healthcare journey. But Bill framed it a little bit differently. And you and here are both from large business organizations. When he says it, it actually means you need to think about yourself being the CEO of a small business, which is your treatment plan. Because as he was explaining it to me, you're going to have, as you already alluded to, a team of doctors that you have to search out for, but you also have to manage your family and those expectations.

34:59You also have to, which he said was one of the most difficult things, travel is how you set yourself up for travel, especially if some of the specialists are far away and how do you manage the money for all this, coordinating it, the scheduling. So as he was describing it, it really did feel like you were running a business. Do you feel the same way? Yeah, I felt like I was a CEO two ways. I was the CEO of the Multimidial Research Foundation trying to get a cure, but I was also the CEO of my own care. In that situation, when it's personal as a patient, it's absolutely true. You are the CEO because you set the tone.

35:38You set the tone of how badly you want to live, how hard you're going to fight, how many places you're going to travel to, how well you're feeling. And when, you know, if you have to wave the white flag, when are you going to do that? So you set the tone, you set the culture, and then everybody else is going to rally around you. Everybody around me knew I was going to fight as hard and as long as I possibly could. When you build that team, you're looking and saying, okay, I've got the medical team. That is a full-time job in itself. Like I said, you've got medical, surgical, radiation, stem cell, so many medical specialists that you're working with at any one time.

36:19The second part is you've got your direct caregiving team. For me, that's my husband and my sister. They're the ones that are taking the day-to-day, getting you to the doctor's visits, taking notes with you, making the decisions with you. There's a whole other third group, which I talk about in the book, which was if you just rely on one or two caregivers, that's going to be hard in your journey. So I had a group of friends that also supported me that were still like the closest in relationships today, which I'm so glad I've had them through this long-term journey because they've made so much of a difference in my life.

36:54And so how you want to live is up to you. And I think beyond those people, it's still up to you to find the resources that are specialists. So maybe you need a social worker. Maybe you're need a counselor, like whatever, a navigator. It's still up to you to define what don't I have in this direct team that I don't want to pay for with my own strength and time. And what do I need to bring in? It's outside expertise that's also still really important. So I think that's a huge part of it. I think on the other side, as CEO of the MMRF, I said that you had to set the tone there too. And you talked about this already.

37:35The tone was urgent. How fast can we possibly get this done? And I think by working with so many people in that ecosystem and bringing them all together and deciding what space we wanted to work in, but having a culture that was, we can do this, like we've already done great work. We can keep doing this and show our success and our true colors. And I think that tone was really important too. When I think about your nonprofit and what you've accomplished. It's similar to what Michael J. Fox has been working on with his ailment. And I was just hearing the other day that because of his work, he has brought in almost$2 billion and that money is now extending so many lives, not just in duration, but making their lives more comfortable as well.

38:24For you, what are the major pillars that you're trying to work on with the organization? And where do you think you've succeeded? And where are the biggest focus areas going forward? When we founded the MMRF in 1998, we were one of the first research foundations out there. So the three foundations that were doing really well were Michael J. Fox, the MMRF, and Cystic Fibrosis. And fortunately, we were all friends. And so we shared our models and our ideas, and we truly appreciated it. respected each other for the great work that we were doing. For the MMR, I think our pillar of strength was that we were a funding entity, but we were a doing entity.

39:07We were going to sit down with the medical community and the drug development community and say, let's put the whole crazy fragmented system aside. Let's all come together and decide exactly what we need in this disease. And that was really part of my business background of if we can intervene and find that white space, how do we work together and stay together? Because keeping everybody and building that level of critical mass in an uncommon cancer was the most important. So as I mentioned before, the first problem was no scientists. We funded them. We got them to the field. The second problem was no basic biology.

39:44We did the sequencing of the genome. We built that out. Then came thalidomide, serendipity, which happens sometimes in cancer. Oh, novel drugs could work. So then we We built a clinical network, which has done over 100 phase one and two trials. Then we said, nobody's sharing data. How do we build out our own data set in myeloma that every scientist in the world could use? That was our compass study. That was a$50 million investment. But it helped us to identify low, mid, high risk in myeloma and understand how the treatments were working. and then we said okay now immunotherapy started to come into the fold how do we keep attracting those drugs when we've already had so many successful drugs in myeloma and that became the myeloma investment fund we kept building like this and so where we are today john is that we went from a five-year survival of under 30 when i was diagnosed and today it is at 62 and so when the American Cancer Society put their report out just recently, they actually acknowledged that myeloma is a rare tumor was one of the most successful cancers in the country.

40:57We are the case study in how to do this. But now look where we are. Two or three weeks ago, there was a huge myeloma meeting. And the topic of the meeting was cure. How do we define cure? Because we believe we are curing this disease now. So we've gone from like the lowest of five-year serivals to now talking cure. And we reached consensus, our scientists and clinicians reached consensus that if you were a patient that was MRD negative, 10 to the negative six for five years without treatment and clean scans, you were cured. Now you can imagine what this means for all of us. As a patient, you can actually say, oh my God, I don't have to freak out.

41:38You can still have some patients that might relapse, right? But we really believe this is going to be where you are. You can go off treatment. We can now use that as an endpoint in our clinical trials. Like it changes everything, but the goal, and I speak to this a lot, is to get us from that 62 to the 92 five-year survival, right? And I want to make sure we do that in my lifetime. So the question is, could we do it in 15 years? If it took us 30 years to get from a 32-year survival to 62, can we get to 92 in 15 years, I believe we can. And the way we're going to do it is we have so many unbelievable therapeutics in the field already and in the pipeline.

42:21So the question is, how do we dose them? How do we combine them? How do we sequence them? And I think the more we pay attention to our ability to do that will be what drives success moving forward, as well as having really innovative clinical trial designs. But the other areas are, I was a smoldering patient with multiple myeloma, which meant they didn't treat me. They just wanted to wait and see when I went really active. And at that point, they would treat me. In today's world, if you're high risk, they will treat you for smoldering. We may never have patients that have to get to stem cell transplants and CARTs if we can identify them very early on.

43:02And then look at the world of AI and how it's going to change every bit of this because maybe AI can go back in and find all of these smoldering patients that we need. Maybe AI can help us to identify what targets are still missing and how to do new drug development in that field. Maybe AI can find every patient we need for these clinical trials. And you know what? It sucks to be bored, but when I get on my phone and play real casino games on spinquest.com, The time flies by. That two-hour wait at the DMV seems like 10 minutes. Play your favorite slots. Live blackjack, live preps with a live dealer.

43:43New players,$30 coin packs are on sale for$10. Play spinquest.com and you'll never be bored again. SpinQuest is a free-to-play social casino. Void where prohibited. Visit spinquest.com for more details. Maybe AI absolutely is going to make every patient better informed to have better discussions with their doctors. So my focus on the future is unbelievably positive. And I don't know if two years ago I would have said this, that we'll find a cure in my lifetime. But I really do believe we can now. I think the tools are available. And then I think the question becomes, again, your podcast is about purpose and I care deeply about that.

44:24The question really becomes, how do we transfer this knowledge across all cancers? Because it's one thing to get to 92 and one cancer. it's really important to get to that in many cancers because of the knowledge sharing that I wish would happen so much more often. Speaking about purpose, and I've been jumping all around on your 12 steps instead of going through them chronologically, but I want to come back to step three because it's really about deciding what matters. And you write that life kind of becomes divided into before cancer and after cancer. So before cancer, you were this big exec in pharma and Gillette before that.

45:10And then after cancer, your life changes. So in step three, you say to ask the question, what do I need? What do I want? Why is that question so hard for people to answer? Because you really have to dig deep to be able to answer it. And I don't think people want to be digging deep into themselves. I think human nature is, this is how my life has rolled. These are the things that happen to me. And this is how I'm going to try to live with it or address it. As opposed to taking the time to say, this is the person that I've been. And certainly you feel like that when you're battling cancer and then thinking to yourself, who is the person that you want to be moving forward?

45:56And so I write about this a lot in the book. You finish your journey with cancer and a lot of people talk about ringing the bell and that you're supposed to be done and you're supposed to celebrate. Well, very few of us feel that way. We do feel like, thank God I got through the treatment. But I remember getting in the car with my husband after my stem cell treatment and being in, having been in isolation for such a long time up at Dana-Farber and just sitting in the car as we drove home and just finally feeling the fresh air like when we got in the car and just saying I feel so small and so tiny that I don't know how I'm going to deal with life I don't even know how I would drive a car I don't know how I would run a meeting and I just came out feeling like I was going to have to heal physically and emotionally.

46:48And I think what happened when I was writing the book was to really understand that I was still scared and I felt like I could still relapse and I wanted to continue running the MMRF at full tilt and eventually do my work up at Harvard and keep running. And I think the question becomes, at what point do you set up some boundaries so that you can start to look at yourself and say, are you truly leading the life that you want to live? Because mine was so focused on cancer that I was missing a lot that was going on in my family. And I could tell by talking to people in my family that I was missing a lot.

47:29And unfortunately, I didn't realize that until I was writing the book. And it took me too long to understand how much I was sacrificing to try to reach cures in such a rapid and fast way. And I wanted to ask another question that kind of tacks onto this because it was something I didn't really think about, but that is, what does survival cost that we don't often talk about enough? For cancer survivors, it depends on so much of this as individual, right? Because myeloma was still considered fatal. So even though I'd been through a stem cell transplant, that. The idea that would come back at that point in time, it always came back.

48:08This was still 2010, right? So I kept moving forward and moving forward. Some people will be told that your cancer is in remission, you're doing great, and you can go off in five years. If you get that clean for five years or 10 years, you're going to be fine. I think where we are today in survivorship is much better than where we used to be because now we can do what's called MRD testing. So we can start to understand how deep is your remission. And can you truly believe, just like we said in my lemma, we believe you're cured at this point in time. We'd only had that in the last year. It's not like people have been doing MRD testing left and right.

48:48And in solid tumors, using CT DNA to actually track patients over time, it's not there yet. Like they're still not doing it. My sister has stage three breast cancer and she gets monitored and they're like, they'll do imaging. But by the time they see things on imaging, you're really nervous. So I think the issue with survivorship is the same issue that we face a lot. How much time do you have to spend saving your life versus living your life? And I talk about this a lot in the book. I feel like the whole challenge of my life was how much time was I going to spend saving it? And then if my true North Star was keeping my family safe and building these wonderful memories with my family, then if I was putting all of my ends into that, saving my life, because I wanted to be alive for everybody, then how am I going to live my life?

49:40And I think that's the same thing in survivorship. Like I try to help patients to understand just on social media and other places, these are the quick updates you need to know. Here's what's going on in targeted therapy, immunotherapy, diagnostics. And the reason I'm doing that is because I don't want them spending hours like I do every morning researching what's going on in oncology. I want them to have a quick fix of these are the questions you need to ask. This is what you need to know. Survivorship can take a huge toll if the patient can't get themselves out of that fear of relapse. And the only way you can get out of that is by doing the appropriate testing, having the appropriate conversations with your doctor of knowing your plan and getting yourself out of that game of thinking back as opposed to thinking what you want in the future.

50:32So this begs the follow-on question for me. After everything you've been through, Kathy, how do you now define, some people might ask it, a meaningful life. I would ask it, what does a passion-struck life mean to you? for me it's understanding that we all want to leave this world thinking that we've made a difference and I could sense that like I said I still had that first journal when I the first day I wrote that sits here on my desk and the things that go through your mind are I want the people that care about me the most to remember me well I want them to remember me as having done good things.

51:15I want them to remember me as a good person. And I think when I was writing the book, I realized that people remember me well and respect me for the work I had done and my tenacity in curing cancer. I never left this field ever. I still have it. I'm still in it from 37 to 67. seven, I've never given up on helping every patient find a cure. But I think what I did realize was the relationships that you have matter so much more. And that if you can find a way to enjoy that purpose with the people that you love and that they truly respect you and like you for that you'll be better off and much, much happier.

52:04I think part of what happened in my survivorship is you're so busy saving your life that, and I talk about this in the book, so it's why I can talk about it here, is that if my sister was going through a really challenging divorce, right, but she had to be there to give me her immune system, right? And yet when she called me to tell me she had breast cancer, she called three times before I picked up the phone because I was always running, chasing in this meeting, in that meeting. And so you look at it and you think, that wasn't nice. That wasn't being a good person. Like I could understand why the people, when I was writing the book, wanted apologies from me because I was always on the run and I wasn't paying attention.

52:49And the other example I give is our daughter. She was in middle school when I was going through our stem cell transplant. And for my kids' sake, I couldn't have kids over. God forbid you get me sick. And God forbid you get moms sick ever. And so I think all of those things take a toll. And my husband was the caregiver. He did anything and everything for him. He sold his company so he could move east. And, you know, all of that for one person, you have to be able to be gracious and thoughtful and spend equally amounts of time caring about their lives as they cared about yours. Cancer is not the trump card.

53:27I can definitely relate to you about the writing process and kind of tuning out on other things in life. As my editor this week, I thought I was through copy editing, contacts me at four o 'clock on Monday. Today, we're talking on a Wednesday, telling me that they've decided they don't want me to use a couple of the stories in the book. So I have to rewrite two chapters. And they said that they needed it by today at close of business. I'm like, you are absolutely out of your mind. Do you think that is the only thing I have to do? But writing a book takes its toll because I think, especially a project like you're doing, you want to put your heart and soul into it.

54:04And so for me, I go into this tunnel vision because I concentrate so much on trying to make it the best that I can. but it ultimately, unfortunately, creates waves in other parts of my lives. It's really true. And I feel like what happened with me was I had this incredibly purposeful life where all I did was study cancer and live cancer and I had no boundaries and anybody could call me at nine o 'clock at night or on Saturday. I'd always get back to them because as a patient, I understood you need answers right now. And I was always that person doing that for them. I had no boundaries at all in that situation.

54:41But I think the second part of my life when I was writing the book and realizing I wish I'd been a better person, like I wish I'd paid more attention. I think what saved me a lot there was one of those best friends that was helping me through my cancer was also the person walking with me every day. Like we'd walk every morning while I was writing the book and she'd been through AA. And that kind of approach, that kind of program is like, well, you know what? If you actually care about relationships, you can study that field too. And I realized I'd never read a single book on relationships ever.

55:18And next thing I knew, I was reading every single book you could find thinking, oh my God, I had no idea all this information was out there. I could have been such a better person. And I really put myself into that. And that was the best walking friend I could have ever had. Because I think in today's world, I still work in cancer. I'm still urgent. I still care deeply. But I still have boundaries to protect my time with those relationships that matter the most. And I think that's the hard part, right? Is that we all want to have purpose in our lives. And we want to make a difference. And we want to be known for something that was relevant.

55:53But at the same time, we all want to share that with the people that we love the most. and we need to keep them close. For the listener, I purposely didn't go through the book step by step because it's something that I want you to purchase, but I'll just give an overview of it. In part one, Kathy goes over the wake-up call. And this part of the book is really about what we talked about earlier. Survival isn't just about the medical system. It's about how do you learn to navigate a broken, fragmented system with urgency, like we talked about strategy and agency. You go through meeting the specialist, diagnosis, other things like that.

56:30And then part two is really about buying time, which we talked about early on. And this section is really about actively managing treatment and maximizing outcomes. And then part three really goes into living ahead. So adaption, meaning, legacy, like we've been talking about right now, and the importance of never missing a screening and protecting your family. So it really does give a tremendous amount of knowledge, not just for a cancer patient, but I think anyone who has any type of illness that is trying to navigate this system and deal with what life is like before and afterwards and how you have to change as a person.

57:14Well, thank you so much for bringing this into the world. And Where can listeners go to learn more about you, Kathy? So anywhere with my name. So it's Kathy and Juisty is G-I-U-S-T-I. But I'm on LinkedIn, Instagram, Facebook, and my website is kathyjuisty.com. Kathy, it was such an honor to have you today. And thank you for bringing so much work and tremendous research and everything else to so many people who are now benefiting from it. Thank you so much for having me. That brings us to the end of today's conversation with Kathy Giusti. And what stood out most to me is this. We often think adversity is something to overcome, something to get past, something to survive.

58:00But Kathy's story reminds us something far more powerful. Adversity isn't just something you endure, it's something that can redefine you. Because when everything is stripped away, certainty, control, the future you thought you had, you're left with a single question. What truly matters now? And how you answer that question has the power to shape everything that comes next. Maybe resilience isn't just about strength. Maybe it's about clarity. And maybe transformation begins not when life gets easier, but when you decide to meet it differently. And that brings us to what's next. In our next episode in the Forged in Adversity series, I'm joined by Dr.

58:38Majid Fotoui, a Harvard and Johns Hopkins trained neurologist and author of The Invincible Brain. In that conversation, we explore how the brain heals, how cognitive resilience is built, and how adversity doesn't just shape your life, it reshapes your mind. As a neurologist specializing in memory and Alzheimer's disease, I've seen thousands of patients with different levels of memory problems, concussion-related problems, different forms of dementia. I know this field really inside and out. And what I've seen over and over again, that many of these older people who have memory problems can be much sharper.

59:14In my clinic, we had 25 brain coaches, people who helped to incorporate these five pillars of brain health, which we'll discuss shortly, into their lives and address the treatable parts. Like we're just talking about how depression is a treatable component of when somebody develops Alzheimer's disease. If this episode resonated with you, share it with someone navigating a difficult season. Leave a five-star rating or review on Apple or Spotify and explore more insights at the ignitedlife.net. Until next time, remember, adversity doesn't have the final word. Transformation does. I'm John Miles.

59:50You've been passion struck. Remember, choose meaning, create resilience, and as always, create the life you've always wanted.

1:00:12Forget whatever plans you have this weekend because you're staying at home and playing on SpinQuest. And there's never been a better time to sign up than right now. New users get$30 coin packs for just$10. All the table games you love with hundreds of slot games and real cash prizes. That's at SpinQuest.com. S-P-I-N-Q-U-E-S-T dot com. SpinQuest is a free-to-play social casino. Void where prohibited. Visit SpinQuest.com for more details. Thank you.