This Is Woman's Work with Nicole Kalil - Survival Is Woman’s Work with Kathy Giusti | 391

Starting point is 00:00:00 Pam, are you here to game with me? In a minute, Ryan, but first, it's time to share what's happening on the 10 News podcast. The 10 News is a kids' news podcast for curious 8 to 12-year-olds that even grown-ups can learn from. What else is there to say? That we cover everything from the Supreme Court in the war in Ukraine to Pokemon and Minecraft and will always tell you 10 things you need to know. And we're available wherever you get your podcasts. Is it game time now, Pam?

Starting point is 00:00:27 It's game time, Ryan. Let's go! I am Nicole Khalil and you're listening to the This Is Woman's Work podcast. We're together. We're redefining women's work. And the new definition is whatever feels true and real and right for you, because you are the decider. And often we talk about women's work in terms of ambition, leadership, impact, and confidence. But we must acknowledge that sometimes women's work looks and feels more like survival. And I'm not talking about the stuff we see on social media or that's sung about in songs. the inspirational quotes, the redemption arcs, the versions that make survival look like a neatly packaged

Starting point is 00:01:15 comeback story. I'm talking about the day-to-day, moment by moment, relentless, deeply human side of survival. The kind that asks you to keep showing up while your life is actively coming apart. The kind that forces you to plan for a future, you're not even sure you'll have. We love to celebrate resilience, don't we? But do we really tell or hear the truth about it? it because resilience isn't pretty. It's not linear. We hear about strength, courage, and clarity, but not about the endurance, the decisions you need to make while you're exhausted and afraid. The fact that survival is rarely about bravery in the moment. It's about necessity. And it's not just about staying alive. It's about who you're forced to become when you're asked to hold

Starting point is 00:02:04 fear, responsibility, hope and grief all at once, especially as a woman. especially as a mother, especially when the systems you're relying on, were never designed with your care in mind. Today's conversation is about the human side of survival with a guest who knows exactly what that means. Her survival meant raising a family while preparing for death, outliving a diagnosis she was told never to question, and rebuilding her identity after the future she was bracing for never arrived.

Starting point is 00:02:36 Today, we're talking about how woman's work shows up, not just in fighting and surviving, but in choosing how to live while you fight. We're joined today by Kathy Jussey, a two-time cancer survivor, healthcare entrepreneur, and founder of the Multiple Miloma Research Foundation. After being diagnosed at 37 and given three years to live, Kathy turned her prognosis into a movement that has helped transform cancer research and dramatically extend the life expectancy for patients. She's been named to the Times 100,000. most influential people, advised national health care leadership, and now focuses on helping patients navigate a broken system with clarity, power, and humanity. She's also the author of Fatal to Fearless,

Starting point is 00:03:21 a deeply personal and practical guide to surviving illness in America today. Kathy, I'm super grateful that you're here. And this episode is about survival. So I'm going to ask you to share about when you were first diagnosed and what survival actually meant and look like day to day. Thank you, Nicole. It's so nice to be here, and I'm happy to answer that question. I was actually diagnosed with multiple myeloma at the age of 37. And, you know, it's a really tricky time to be diagnosed with a fatal blood cancer like that because here I was in the peak of my career, happily married. We just bought our new home. And we had great jobs. And I remember my husband and I look at each other as we were putting the Christmas tree up and going, we're doing it. Like we're actually getting this right. And then out of the blue, you know, I just went in for a regular physical. We were trying to get moved on to a fertility expert for our second child. And, you know, all of a sudden I get a phone call. You know, please come in again and we need to do some retesting.

Starting point is 00:04:24 And next thing I know, I'm taking that Christmas tree down. And I'm thinking, I may never open this box again. Like, I could be dead by next Christmas. And I think that's the hard part of being in the peak of everything. and then realizing, you know, they all say it. Like your life can change in a second, and it can. It really can. I didn't think it would happen to me, but of course it does.

Starting point is 00:04:48 And so when you get a diagnosis, and I think of multiple myeloma back then as being similar to what we look at as pancreatic or brain tumors today, it wasn't as if there was any hope. It was basically, this is fatal, you will be gone in three years. And so when you all of a sudden have to live your life like that, it's a real, challenge and everything you were doing in your career kind of goes by the wayside because now all I was thinking of is, God, well, my daughter even remember I was here. You know, that's all that was going through my mind. And where do I go from here with my husband? And so that, that becomes tricky.

Starting point is 00:05:26 There's everything else goes away, but your family. That's what happens with fatality, sadly. I feel like there are a lot of, I don't know, again, kind of those Instagram worthy, like it becomes clear what really matters, things that we say about times like that. And I'm sure that there's truth to them. But when you're in it, what is that, like, how do you even put one foot in front of the other? How do you, can you even hold onto those aspirational things? Is my question making any sense? Yeah, it does. It does. Because I think you're absolutely right. Like, what, how do you put your feet on the floor in the morning? How do you get out of bed? And you're right. Those were the toughest times. I mean, going to bed at night and you're thinking

Starting point is 00:06:13 about all this and you wake up in the morning and you're thinking about all this. The joy of having an 18-month-old was, though, you know, I would have to go, you know, I'd hear her getting up out of her crib and I would, you know, go to grab her and, you know, the smile on her face and the smile on mind that takes you to a new level. I need to be up. I need to be doing life with her right now. I need to be doing life with my husband. And I think what was really going through my mind, at that point in time, very early on, was how do I create the best memories with them? How do I help them to remember me in a really positive way? It wasn't on my mind that maybe I could beat this.

Starting point is 00:06:51 It happened over time, however, that the more research I started doing in my cancer, and I always say this to every survivor out there, and there are 18 million cancer survivors out there today. But I always say this to them that your situation is always going to be unique in someone. So you always have to find that one thing that you can hold on to. And the other thing that's so different today than it was back then is the science is moving to break next beat. So there's more hope today if you're doing the research back then.

Starting point is 00:07:23 Science was much slower. But the one thing I was able to hold on to was I'm an identical twin. And when I started doing the research, I started to understand that there was a new procedure called a stem cell transplant in which I could go through high-dose chemotherapy and get a stem cell transplant with my identical twin. Again, not a lot of work had been done on identical twins. I didn't know how I would do, but I knew I was different. And thought, well, maybe I'll hang on to that.

Starting point is 00:07:53 And that allowed me to get up in the morning and think, okay, I need to get a first opinion, a second opinion, a third opinion, and really get myself on this ability to understand anything and everything about my disease. And I was really fortunate. I worked for the C.O. of our major pharmaceutical company at the time. And he could not have been more gracious at working with me to give me a leave of absence and allow me to go do that. Not everybody has that luxury of a phenomenal boss working for a great company that really looks out for you and helps you. But I was blessed with that. I really appreciate you saying that everybody's experience. is different and everybody has different circumstances.

Starting point is 00:08:36 Like there is no one way to navigate through survival and that we all have something to hold onto. And it might be a very different thing. But finding that thing for ourselves is, I think, very important. I'm curious your thoughts on this. We use terminology like fight and beat a lot when it comes to cancer or survival. And I've heard some people share the perspective that that that. might not be helpful in that like if people lose their battle with cancer, then the implication is

Starting point is 00:09:10 they didn't fight hard enough. Does it feel like a fight? Are there better words to describe it? Does that really matter? I'm just curious their thoughts on it. It does matter because technically when you're dealing with cancer, sometimes, you know, when the disease is highly fatal and there's not a lot of options for you, it does feel like a short fight. But for many cancer patients today, it's a longer battle and it feels much more like a marathon. And you're trying to stay on top of it for extended periods of time. That's a good thing. You know, the American Cancer Society has shown that the five-year survival for cancer survivors has gone up dramatically since decades ago. And that's a super positive thing. So I feel like when you are in the thick of it,

Starting point is 00:09:59 there's different times along the journey. There's the moment when you're diagnosed, and this is kind of I wrote the book was to say, you know, there's the time when you're diagnosed. And at that point, you know, you're drinking water from a fire hose. You're overwhelmed. And it's, it does feel like a fight. And the reason it feels like a fight is because the system is not organized in a way that makes it easy for you. It's really difficult to navigate it. So you all of a sudden have this diagnosis. It comes on your portal. You've got to build your medical team. You've got to understand what you have. you've got to start thinking about what testing needs to be done. That feels like a fight because it's not handed to you on a silver platter. It's not consumerism as we know it today. And then I think over

Starting point is 00:10:42 time, as you get through this, you know, really challenging time of treatment when you're in the thick of it, for me, it was like during my stem cell transplant and high-dose chemotherapy, you do feel like you're in a fight and survival mode once again. But then I think it starts to level out. And after you get through a lot of that, that's when it starts to feel a bit more like a marathon. You've been in this for a long time and you're still worried about relapse. I mean, as cancer survivors, that's the one thing. We get through the treatment and everybody thinks, oh, you're going to be fine. Like, you know, hooray, let's go celebrate. And you're thinking to yourself, why don't I feel like celebrating right now? And the reason is because you've got through it and you're tired and your body's adjusting

Starting point is 00:11:24 and you may even be depressed. And at the same time, you're still worried like, what happened? if it comes back. And so that's why I really think it is more of a marathon for many cancers today. You mentioned earlier about building your team, especially because the quality of care isn't and getting what you need is it can be really challenging. We talked about this a bit before we hit record. I think a lot of people now in trying to find information and building their team are going online.

Starting point is 00:11:57 They're going on social media. and I know you spend a lot of time there in order to be a resource and to be able to help other people going through it. Talk to us about social media as a resource when you're in this survival mode. Well, I think first it's really important to back up and realize that as a woman, we are the CEOs of health care for ourselves and for our families. So whenever there's issues, like I always say to everybody, When I listen to a lot of podcasts, the discussion almost makes it sound like, do this, do that, as if we're always healthy. Well, we're not.

Starting point is 00:12:37 I mean, a lot of us are not healthy and or we're taking care of spouses, children, parents that are sick too. And that's another burden that falls to us. So whether it's cancer or another health issue, I always remind women that when you are the CEO of health in your family, that there are a number of resources that are available to you. So the first thing that happens in today's world is you're going to get information off a portal. That's new. But we all have portals.

Starting point is 00:13:05 You have to go into that portal and understand that by putting questions in and starting to talk to the nurses and doctors there, if you put things in writing, they're going to respond to you. Your portal is a very important tool for you. Secondly, is once you actually know what it is that you're dealing with, whether it's for you, your children or your parents, you have to be a very important tool for you. you have to pull it right from the portal so you know exactly what it is. And I know that everybody's going to go to Google or in today's world to AI and their favorite chat GPT approach. I think that's fine. But what I always remind people is you can get yourself in healthcare into a bit of a jam with that resource unless you always ask, here's exactly what I have.

Starting point is 00:13:51 Please give me your thoughts based off of peer reviewed journal. that are the most current. And please tell me what organizations are working in this field. The reason I say that is because having been founder of the MMRF, I can't tell you how many people that have multiple myeloma are out there that still haven't found us. That I'm shocked. Like, I feel like we're everywhere,

Starting point is 00:14:14 but it is hard for busy moms to find these resources available to them. But organizations are often out there. It could be the arthritis foundation. It could be Michael J. Phopps. It can be cancer groups. But you, again, want to make sure that they're well recommended and they're very well run. So once you move through those organizations, they often have amazing resources for you. They literally will often have navigators working directly with you.

Starting point is 00:14:40 And so you can then find a navigator from a hospital you're working with, a disease foundation you're working with, and even sometimes through your insurance company. So I feel like it's a matter of understanding all of those tools before you head out to social media. Because now you've got a foundation of understanding of what you're working with. And over time, you'll start to see who are the, I want to call them educators, not influencers on social media. And you want to really look at their credentials. A lot of times you'll see some amazing key opinion leaders or doctors in the field and you want to follow them. but you'll know if they're good because they're often the ones that are in the peer review journals. That's who you want to be talking to.

Starting point is 00:15:28 A lot of times they may be appearing in the major medical meetings. So those medical meetings tell you who are the up-and-comers in whatever disease you're dealing with. So that's who you want to be following. As a patient, a lot of people follow me, but I only post based off of peer-reviewed journals, major medical meetings, and key opinion leaders that I know are highly credible. and I take it very seriously. I think you can get down, I don't know, a lot of rabbit holes where you can get stuck

Starting point is 00:15:58 following the wrong person and they're just telling you their own personal story and that may not be the same as yours. Sorry to break in, but this part matters. Rate the show, share it, and support the sponsor so I can keep making episodes worth interrupting you for. Here's my hot take. What if we all gave the finger to resolutions about losing weight?

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Starting point is 00:16:47 You take their quiz and get a personalized roadmap to sexual. happiness, no pressure, no performance, no shame. So if you're done with resolutions that make you feel smaller, try one that actually expands your life and relationships. Click the link in show notes to kick off your journey by taking the quiz. Get your personalized roadmap to sexual happiness with Beducated. I would add at best, at best they're telling you their own personal journey. At worst, I hate to say it, but there are some grifters and some people who are trying to capitalize and somebody with their supplement promo code and, you know, all of that. Yeah, and I think that's why as women as a CEO of healthcare, you want to make sure you

Starting point is 00:17:33 understand the resources and how to get them. So if you move right from your portal to conversations with your doctors and nurses right off there to understanding what's out there from the foundations and major medical meetings, you'll start to have this foundation of health that will give you great questions to ask the doctor when you go in to see them. And I always remind everybody, those doctor visits are shorter and shorter now. You know, with an oncologist, we get 15 minutes. If you don't walk in there knowing exactly what you need to get answered with him or her, you will walk out feeling like you let yourself down. It's not a good feeling. Absolutely. So I just want to reiterate, create that foundation of understanding,

Starting point is 00:18:16 access that peer-reviewed medical, you know, and then leveraging social media as an additional resource on top of that, being careful and mindful of who you follow. Yes. And do you listen to? And always ask your doctor, because at the end of the day, the best medical advice is going to come from your clinician, if you're the right clinician and right team.

Starting point is 00:18:40 But the value of that come from the questions you're asking. You have to be asking the right question. when you see your clinicians to get the best answers for you. Okay, so all of that and let's add in the challenge of finding the right clinician or being taken seriously or advocating for yourself when something just doesn't feel right, even though, you know, XYZ medical expert says whatever they say. Any advice for creating that foundation of understanding and making sure you're accessing your medical experts, but then also the trusting yourself, advocating for yourself, pushing back when something doesn't feel right.

Starting point is 00:19:25 Woman's intuition is a wonderful thing. I think we're very good at understanding our own bodies, and I think we're really good at understanding our families and, you know, what their concerns might be. So I feel like you have to build on that intuition, but I also feel like there's a reminder I try to give All Woman, which is for some reason, we feel intimidated when we go in and want to change our doctors or change a point of view. And we have to recognize that it's like anything else in life. We are paying the doctors to help us. I mean, there's a reason why they're there. And so we want to have a great conversation with them and a great discussion with them. And the other thing is that we care more about finding our own cures than anybody else does. And we know the uniqueness of our own situations.

Starting point is 00:20:18 So that's when you have to understand that there's no way in today's world, every doctor can stay on top of everything that's rightly directed to our specific type of cancer or our specific disease. It's on you to know all that. That's why when you were asked me, is it a fight? Well, in some ways it feels like it because I always say to everybody, especially in oncology, there's so much progress that if you're not doing the research on it and staying on top of it, you can't expect your community oncologists to know all that. They may be working in, you know, 15, 20 cancers if they're a general oncologist. And so how would they possibly know everything going on in your specific one? And it's also why I always say get a second opinion from somebody who lives and breathes in your

Starting point is 00:21:05 illness so that you can make sure that you're working with somebody from a major academic center who's doing some of the cutting edge research. Phenomenal advice. I want to go to something in our preparation that stood out to me, which was you had three decades of journals that helped you to reveal who you were, who you were becoming. And in that, notice some patterns that we as women tend to repeat, especially when we're under pressure or in a situation like survival. Can you share with us a little bit about that? Yeah, it was very unique. When I went to write the book, you know, I had to go back and remember my life and what

Starting point is 00:21:45 it was like the day I was diagnosed. But I had started journaling for our daughter Nicole right when I was diagnosed. And really, I started the journal because I thought, this is a good way for her to remember me. I'm just going to write all these things about the days we were spending together and what life was like. But as I kept journaling, I realized that I was writing it for her and me. And so in the first, I don't know, 10 pages of the journal, it was like everything that I was so sad I was going to miss. And I also wrote to her and said, I'm so sorry, I didn't get you a brother or sister. Like, that was my intent. I had an identical twin. I had a sidekick beat beside me all my life. She's still here. And I really wanted that for Nicole. And the more I was.

Starting point is 00:22:31 writing it, the more I realized I wanted to move forward on some of these things. And so the journals almost became what I wanted for her, but what I wanted for both of us and for my husband, too. And so that became my North Star. I wrote in those journals in the first number of pages. I want to have another child and I want to create amazing memories with his family for as long as I live. Well, you know, fast forward, I didn't expect to live. I really didn't. But thanks to all of our work at the multiple myeloma research foundation, which I had founded and our ability to bring new drugs to market and having my identical twin sisters immune system, you know, I kept realizing like I'm still here and I'm living longer and longer. And so when I went to write the book, I had 30 journals,

Starting point is 00:23:17 one for every year I never expected to live. Now imagine the uniqueness of this, that, you know, you're my age and you now are reading your life back again. I mean, nobody, nobody does that from the moment that they think they're going to die until I might be around to see her go to prom and drive and all these things. And I did have my second child. And that was everything I ever dreamed of. So now I'm reading it and I'm going, oh my God, like there's so many things in here that I wished I'd done differently. And I think one of the big takeaways was you are so busy saving your life when you have a fatal disease that sometimes you forget to live your life. And I could see it. The urgency for me, not only in trying to find the right treatments, for me and for

Starting point is 00:24:06 everybody else that was, you know, dying of this disease around me, and believe me, everybody was dying around me. I felt that urgency every single day, every day. And so I was working 24-7. And what was really interesting was the foundation was delivering results. So we were seeing new drugs. Patients were on them. We were starting to extend life. We were starting to save life and I thought I got to keep going. It's got to be me. And so when I look back on it, I realized that I had no boundaries. And if there's one piece of advice I would I would give to everybody, it's no matter whether you're living with a fatal disease or you're not, you have to have some boundaries. And just to give you an example, I realized that as I was running the organization,

Starting point is 00:24:52 we would do a lot of events for fundraising and a lot of, you know, high science events too. And I was off and running them. And so we would do a big event in Chicago. And, you know, I was always the speaker, the keynote, putting everybody together. And at the same time, our board of directors, which was phenomenal, thought, oh, well, Chicago's a great city for all of us to meet and hold our board meeting. So let's just add that on to that same day, too. And, oh, while we're there, why don't we just do Kathy's review while we're there? Oh, we could review all the senior management team. And next thing you know, everything is just being, it's pile on, pile on, pile on. And never once did I think to say, you know what, could we just like space a few of those things out?

Starting point is 00:25:34 And so what would happen is I would get to these events. By the time I was speaking, I was so sick. And sometimes I was on treatment. You know, I was on, you know, chemotherapy. And I'm standing up there at the podium going, I don't know how I'm going to do this. And yet it was in some ways, it was all on me. I never said, if I had said to the board, can we do this differently? They, they would have said yes. But I just kept going. And I feel. like it's the same thing. Like, um, when you do that and I was going back and reading the journals, I realized what I had missed for my family. So you'll notice in the book I wrote that I asked my family, did they feel like they deserved an apology from me? And my husband, my twin sister,

Starting point is 00:26:18 and my daughter all said yes. And there was good reason for them wanting an apology. And that was the success of the foundation, the ability to believe I was going to save my life. And I was going to save my life, and live longer, I just kept putting it in my own hands. I'm going to find the next drug. I'm going to make sure something's there when I relapse. And at the same time, I'm forgetting that when I first got sick, my husband sold his company so that we could move east and be near our family. Huge, huge sacrifice.

Starting point is 00:26:48 When I was doing my stem cell transplant with my sister, she was going through a terrible divorce. Was I really there for her? No. when when I was doing my transplant, my daughter was in middle school. That's not a great time for young girls having their mom in isolation.

Starting point is 00:27:04 So you can understand why people are looking at this and saying, these were tough times for all of us. And you were asking me, like when you live long, this is what happens. Your family's watching and going, when is it going to stop? So by the time I got through the myeloma and still worried about that, but then I got breast cancer, I'm sure my whole family was like,

Starting point is 00:27:23 oh, my God, again, here we go again. and I think that's a lot for any family to get through. So my advice for women, when you're going through the business side and the personal side, is it gets really tricky, but understanding that it's going to ebb and flow. For me, there were times in working at the MMRF and leading it that I had to be flat out. There were just new drugs developing. I wanted them to get there faster. But there were times when I could have stepped back just a bit and made sure I was there for my family.

Starting point is 00:27:55 I think teenage years are the toughest on kids, and I wish in some ways that I had been there for those years much more for my daughter. I did do it for my son, having learned the hard way. And I think that was a great blessing for me. But you've got to watch those around you in your family and make sure that cancer does not trump all. Disease does not trump all. And caregivers and those that love you can get tired too. And you've got to check in with them and make sure that they're doing okay as well. It's not just about you.

Starting point is 00:28:27 Yeah, good reminder that neither life nor survival are solo events. And I always appreciate a good reinforcement of boundaries. And just that reminder how often we don't even ask or we don't even put it out there. It's easier than we think it's going to be. And people are more willing to say yes than we think they're willing to. Lots of good things in there. My last question is just reinforcing every challenge, every person, and therefore every survival looks and feels a little different.

Starting point is 00:28:57 What advice or encouragement do you have for somebody who might be in it right now? Well, the advice I have for people now is the science is moving so fast, whether it's oncology or other diseases, that there is so much reason to hope. Because science is going on today is going to make. move forward. So if you're an oncology or cancer survivor and you're looking at new immunotherapies and you're newly diagnosed, well, a lot of those amazing drugs are going to start being available to you as a newly diagnosed patient or drugs move into other cancers. You may find something successful in my alumma that moves to another cancer. So what I really hope for all women is that if you

Starting point is 00:29:50 have an illness, that number one, you understand there is reason for hope because the science is moving fast, that you understand that the ability to research it and find your path forward is going to still sit with you. So you have to do it yourself and or find other people that help you do that research, but it will absolutely be worth it. And then you have to understand how you want to balance saving your life with living your life. And I think that is the trickiest part because the medical system can take over every ounce of energy that you have and you've got to ask for help and find the resources that we talked about to ease the pain a bit there and take that time to go spend it with your family or if you're working and you love your job and it's purposeful,

Starting point is 00:30:38 you can put your time there too. I mean, all of them are important. I was an extreme because I could see by my pharmaceutical background, by being a patient, by having the urgency that I did, I could see that I was in a unique situation to truly start curing this cancer. And so I knew that saving my life was going to be very much on me and the organization that I started, and I felt that pressure every day as a leader. And now you're trying to balance that with these two beautiful children that I was blessed with and a husband who was an amazing caregiver. And I think that was my regret of not giving them what they deserve.

Starting point is 00:31:21 Well, Kathy, I am grateful you're here, and I appreciate your transparency and your work and your lessons and your encouragement. For you, the listener, a reminder that her book is called Fatal to Fearless, and you can find it on Amazon or wherever it is that you buy books. Let's keep our local bookstores in business. You can also follow Kathy on Instagram. at Kathy Justy.

Starting point is 00:31:45 We're going to put all the links and all the ways to find and follow Kathy in show notes. Kathy, thank you. Thank you. Absolutely my pleasure. All right, friend, if you're listening to this

Starting point is 00:31:56 and you're in it right now, whatever it looks like for you, here's what I hope you hear. Survival doesn't mean being brave all of the time. It doesn't have to be inspiring. It doesn't need to make sense yet. In fact, it probably won't.

Starting point is 00:32:10 You don't need to do any of this perfectly. ever has. You don't need to do it alone. Nobody ever should. And you don't need to know who you'll be on the other side to keep going today because nobody ever could. Survival isn't a detour. It's not a sign you took a wrong term. Sometimes survival is the work itself. And choosing to live, choosing hope, whatever that means, whatever that looks like, even in the middle of it, all of that is woman's work.

This Is Woman's Work with Nicole Kalil - Survival Is Woman’s Work with Kathy Giusti | 391

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