Kathy Giusti (3:58)

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 looking 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. 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. 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 are doing in your career kind of goes by the wayside. Because now all I was thinking of is God, will my daughter even remember I was here? You know, that's all that was going through my mind. And, and where do I go from here with my husband? And so that, that becomes tricky. There's. Everything else goes away but your family. That's what happens with Fatality.

Nicole Khalil (5:51)

Sadly, I feel like there are a lot of, I don't know, again, kind of those Instagram worthy statements, 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 on to those aspirational things? Is my question making any sense?

Kathy Giusti (6:21)

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 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 mine, that, that takes you to a new level of 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. 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 some way. So you always have to find that one thing that you can hold onto. And the other thing that's so different today than it was back then is the science Is moving at breakneck speed. So there's more hope today if you're doing the research. Back then, science was much slower, but the one thing I was able to hold onto 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. 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 COO 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.

Nicole Khalil (8:49)

I really appreciate you saying that everybody's experience is different and everybody has different circumstances, 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 to 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 might not be helpful in that. Like, if people lose their battle with cancer, then the implication is 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 your thoughts on does

Kathy Giusti (9:40)

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 are 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, there's different times along the journey. There's the moment when you're diagnosed, and this is kind of how I wrote the book was to say there's the time when you're diagnosed and at that point you're drinking water from a fire hose, you're overwhelmed. And 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 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 to yourself, why don't I feel like celebrating right now? And the reason is because you got through it and you're tired and your body's adjusting and you may even be depressed and at the same time you're still worried, like what happens if, if it comes back. And so that's why I really think it is more of a marathon for many cancers today.

Nicole Khalil (11:57)

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, 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.

Kathy Giusti (12:36)

Well, I think first it's really important to back up and Realize that as women, we are the CEOs of healthcare 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. 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. 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 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 ChatGPT 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. Please give me your thoughts based off of peer reviewed journals 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. 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. Fox, 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. 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 reviewed journals. That's who you want to be talking to. 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 following the wrong person and they're just telling you their own personal story and that may not be the same as yours.

Nicole Khalil (16:25)

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Pam (17:54)

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Nicole Khalil (18:27)

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Nicole Khalil (19:06)

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.

Kathy Giusti (19:21)

Yeah. And I think that's why as women, as a CEO of healthcare, you want to make sure you 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 and 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.

Nicole Khalil (20:06)

Absolutely. So I just want to reiterate, create that foundation of understanding, 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.

Kathy Giusti (20:22)

Yes.

Nicole Khalil (20:23)

And who you listen to.

Kathy Giusti (20:25)

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 have the right clinician and right team. But the value of that comes from the questions you're asking. You have to be asking the right questions when you see your clinicians to get the best answers for you.

Nicole Khalil (20:44)

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.

Kathy Giusti (21:19)

Women'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 women, 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. 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 asking 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 oncologist 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 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.

Nicole Khalil (23:07)

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, noticed 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?

Kathy Giusti (23:34)

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 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 gonna 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 beside me all my life. She's still here. And I really wanted that for Nicole. And the more I was 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 this 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 sister's 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, 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 does that from the moment that they think they're gonna 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, you know, 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 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 gotta keep going. It's gotta 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 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 as I was running the organization, we would do a lot of events for fundraising and a lot of, you know, high science events, too. And I was often 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 is 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? 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 would have said yes. But I just kept going. And I feel like it's the same thing when you do that. And I was going back and reading the journals, I realized what I had missed from 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, 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 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. 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 I was doing my transplant, my daughter was in middle school. That's not a great time for young girls to be having their mom in isolation. 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, 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, 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. 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.

Nicole Khalil (30:21)

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. What advice or encouragement do you have for somebody who might be in it right now?

Kathy Giusti (30:56)

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 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 myeloma that moves to another cancer. So what I really hope for all women is that if you 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, you can put your time there, too. I mean, all of them are important. I was and 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 deserved.

Nicole Khalil (33:15)

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 whatever, wherever it is that you buy books. Let's keep our local bookstores in business. You can also follow Kathy on Instagram, Athyji. We're going to put all the links and all the ways to find and follow Kathy in show notes. Kathy, thank you.

Kathy Giusti (33:44)

Thank you.

Nicole Khalil (33:45)

Absolutely. My pleasure. All right, friend, if you're listening to this 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. You don't need to do any of this perfectly. Nobody 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 turn. 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.

Pam (34:44)

Pam, are you here to game with me?

Nicole Khalil (34:47)

In a minute, Ryan. But first it's time to share what's happening on the 10 News podcast.

Pam (34:51)

The 10 News is a kids news podcast for curious 8 to 12 year olds that, that even grownups can learn from. What else is there to say?

Nicole Khalil (34:59)

That we cover everything from the Supreme Court in the war in Ukraine to Pokemon and Minecraft. And we'll always tell you 10 things

Pam (35:07)

you need to know and we're available wherever you get your podcasts. Is it game time now, Pam?

Nicole Khalil (35:12)

It's game time, Ryan. Let's go.