Kathy Giusti: A Roadmap to Recovery
“It's okay to mourn what you've lost upon receiving a diagnosis.”
🎧 37 min | Episode 13 | May 30, 2024
Kathy Giusti
A Roadmap to Recovery
In a world where the loss of physical health can often feel insurmountable, some patients turn adversity into advocacy. Kathy Giusti is the founder of the Multiple Myeloma Research Foundation and the author of the recently published book, Fatal to Fearless. She is also a two-time cancer survivor.
At 37, Kathy faced a devastating diagnosis of multiple myeloma, with doctors giving her just three years to live. She was a young mother running global operations for a pharmaceutical company at the time. Through relentless research and a steadfast commitment to her healthcare management, Kathy survived her initial cancer and, decades later, breast cancer.
In her book, Kathy shares her inspiring journey and offers an essential How-To guide for navigating our complex healthcare system, pouring all of her invaluable knowledge into its pages.
However, as she penned her thoughts, a fresh perspective emerged. She says: “Some of my greatest gifts, like being daring and determined to win over my disease, became my greatest curse in many ways.”
As it happened, it was time for Kathy to heal the emotional toll that illness leaves on families and caregivers.
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Transcript
(Edited slightly for clarity)
Melissa Ceria: Kathy Giusti, welcome.
Kathy Giusti: Thank you. So happy to be here.
Melissa Ceria: You have written such a valuable book. Having watched my father and loved ones navigate their cancer treatments, it's complicated, and I think we should all have this book on our bookshelves because sooner or later we will need it. And in the opening pages of your book, Kathy, you emphasize that the path to healing starts with acknowledging grief. You write, “it's okay to mourn what you've lost upon receiving a diagnosis”. What are the different things that we lose?
Kathy Giusti: I think you lose the life that you had before. You know, we all remember, like I say in the book, I was diagnosed at this time on this day. And so, life becomes Before Cancer and then life becomes After Cancer. And you can't imagine that your life is ever going to be the same. So, I think what happens is if you are a patient who's been diagnosed and again, it depends on how fatal your disease is and how challenging your disease may be, you're facing the fact that your life will have different needs and wants associated with it. So, in my situation, I was an executive. You know, I was incredibly busy in my job. That was everything I was doing. I was taking care of our one-year-old daughter, but then all of a sudden life switches. And now I'm sitting there thinking, “oh my gosh, I'm going to die within three years”. And the important part, and I talk about this a lot in the book, is sitting down and writing, in this new life that you have, what are your needs? The things that are keeping you awake at night, like insurance. “Will I go back to work? Who's going to cook dinner for the kids? Who's going to take care of my parents?” And then your wants in this new life, that will be a new life and a new challenge for you.
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Melissa Ceria [00:03:08] And does that grief pave the way for acceptance?
Kathy Giusti [00:03:11] The grief is a point in time in which you have to acknowledge to yourself that it has changed. It's going to be different, and you have to find those glimmers of positivity and hope in the future to allow you to move ahead. But grief has to be accepted.
Melissa Ceria [00:03:32] It does have to be accepted. And throughout the book, Kathy, you come across as someone who tends to face things head on. You have a very pragmatic approach, you sort of dive into action upon learning about your diagnosis. And that's such a strength in difficult moments, but have you always approached life this way?
Kathy Giusti [00:03:51] I think I've always been very pragmatic. I think I've always been a curious mind. So when I see a problem, I've always had this desire to solve it. And I think that has served me incredibly well. When I got diagnosed with cancer, it was the same thing. Like, I'm going to learn everything I can about this cancer. I'm going to understand the challenges. I thought I would understand the challenges from my own personal journey, but my curiosity overtook me and I became much more involved in understanding the challenges of the entire medical system.
Melissa Ceria [00:04:27] For listeners who might find this approach difficult, because not everybody you know, necessarily has the strength to face everything all at once, what advice would you have?
Kathy Giusti [00:04:36] I think that the most important thing you can do is surround yourself with people that truly care about you, and allow them to come in. Share your story with them, and also be incredibly thoughtful in the roles that you want them to play. This is where a lot of people struggle. You have to, as I said, understand your needs and your wants and then realize that certain people are going to be very happy and very skilled at taking on certain needs that you have, and others are going to be better at other things, so allow them. It's like building any business team. Allow them to do what they want to do with you and make sure that you're thanking them along the way. So an example I always give to people is, anybody who gets diagnosed with cancer, they're not going to look to me and say, “Would you bring food to our house and cook dinners?”-- because it's not a great skill of mine. But if they said to me, “Kathy, would you take an hour and just do some research on my rare cancer and help me to understand what doctors I might see or who's publishing the best information?” That's a perfect need to give to me. I'm happy to do it. I'm good at it. So I think that's where people have to put together their teams, not just their medical team, but their caregiving team. It can be spouses. It can be children. It can be partners. It can be friends. But understand who's going to carry you through this journey. I think the other piece is that the cancer journey is a roller coaster. And sometimes, Melissa, you're going through a very steep hill and it's when you, for example, get diagnosed or when you're starting your treatments and you've got to get up that hill and you've got to come back down again. But along the way, there may be other smaller hills, and at that point in time, don't call out every favor when you feel like you can stand on your own two feet. Make sure you're calling out the big guns when you really need them.
Melissa Ceria [00:06:36] That's very helpful advice.
Kathy Giusti [00:06:38] And do what you can when the hill is small and you feel like you're empowered enough to take that on.
Melissa Ceria [00:06:45] And did you find that you gained confidence in that respect as you were moving through your treatment?
Kathy Giusti [00:06:50] Absolutely. I felt like every time I was able to understand my disease better, every time I was able to make really thoughtful decisions, every time I could see that it was working, every time I spoke to a doctor and said, this drug is driving me crazy, can't we change the dose? And we did. And I felt better. Every single time those things happened, it built my confidence that I needed to advocate for myself, and I think every time I could see my team working around me and supporting me, I started to really understand, especially when I was writing the book, the importance of thanking them and being grateful for that. But I think, you know, I was always doing two things, Melissa. I was trying to save my life, but I was trying to also, as I was observing the crazy cancer system, which is incredibly broken, I was also trying to fix a broken system. The system, it's hard to change it, but you can beat it, and I think that's important.
Melissa Ceria [00:07:51]
Kathy Giusti [00:08:14] Yeah, I give the example. When I was leaving Borders Bookstore, that in one hand I had a calendar which was going to reflect our new life of doctors appointments and visits. And the other hand was a journal, and I started the journal basically so our daughter, Nicole, would remember me. And as I started writing in the journal, I thought I would just be sharing all of the moments that we had together and knowing I would only live three years, I felt like it was really important to document every single one of them, what was going on, how are we feeling, and then hopefully she would at least have some knowledge of her mom. But what I found in addition to that was I was writing about my own fears and my own hopes for the future. So what shocked me when I went back and read them was how quickly I was writing things like, “I so wish that I'd been able to give you a brother or sister.” And that was partly because I had grown up with an identical twin. I always had a sidekick with me, and I really felt that would benefit Nicole. And again, we found my cancer while we were trying to have another child and being referred to a fertility doctor. So I wanted to kind of feel like I was moving on in my life. I was going to live like I was going to live even though I was dying. So I think the beauty of the journals is reading between the lines and always seeing that even though I was sharing every moment with Nicole and then David after he was born, and Paul, my husband, that what was between the lines is what I was really fearing and what I was really hoping. And so as I went back and read them, it was so clear, what I had done right, what I had done wrong and what I didn't do at all. And the journals told me that.
Melissa Ceria [00:09:58] You come across as somebody who is very strong. But what did you fear?
Kathy Giusti [00:10:03] I feared, not the fear of dying. I feared leaving them. And would they be ready for me to leave them? And I think that created this crazy urgency in me. I wanted to know that they had everything. So I wanted Nicole to grow up feeling secure. I wanted Nicole and David to have this incredible bond together. I wanted Paul to be able to put Nicole's hair in braids and ponytails, and I would honestly teach him. There were just so many things I wanted to see and coach them on. And in some ways, it backfired on me because it was almost pushing things to happen faster, that didn't need to happen faster. I wish I'd just been living and loving the moment, as opposed to constantly analyzing it and making sure that, oh, they're going to be okay. You know, all you care about is that your family's going to be safe.
Melissa Ceria [00:11:08] And do you think that with a huge loss of control in one aspect of your life, it can then sort of spill over to wanting to over control another aspect?
Kathy Giusti [00:11:19] It's absolutely true. The thing about the cancer journey is you don't know when you're going to get bad test results. So when you're feeling well or you have a window where things are going well, you're trying to get everything crossed off your list. Like, I can do this, I can do this, I can do this, because you're just waiting for the other shoe to drop. And you're thinking to yourself, the moment I get bad test results, I'm going to have that gut-wrenching feeling, and I'm not going to be able to work through it. And so that's kind of how you look at things and it becomes a huge challenge. And that's the part that people don't understand about cancer is you're doing so many tests and you just don't know when things come back. It's very unusual for your test results to come back and go, oh, everything is fantastic. Usually you get some results back and this looks good and this doesn't look good. And you've got to sort through it and decide, how do you want to take that on? How does it affect you? You know, for me, I was working full time and raising our family. And if you have bad test results and you have to go out and run a huge meeting or travel, you know, you've got to compartmentalize and get through it.
Melissa Ceria [00:12:31] When you describe the test results, it's very much like life in some respects, like it's never all good or all bad. I mean, to some extent, what you're describing is also just learning how to live with both together.
Kathy Giusti [00:12:43] It really is. I think that's, that is the beauty of it. And I think that was when I went back and read the journals. It really teaches you that you've got to be savoring the moment that you're in and not worried about the future impact that moment's having on your child, your spouse, or other people around you. Just be in that moment and we all talk about it. It's a really hard thing to do, but critical.
Melissa Ceria [00:13:10] You outline 12 steps in your book that fall under four broad categories. Can you just briefly talk about the categories?
Kathy Giusti [00:13:17] Yeah. So, you know, the way I wrote the book was, imagine that you were just first diagnosed with cancer. What do you want to do? And in that situation it really becomes doing incredible research, learning everything you can about your disease. And I think the importance of that section is explaining to you that there are a lot of really good third party websites that you can go to and disease foundations that you can go to. So that research becomes critical, as does getting a second opinion and knowing your insurance. The second area is, now it's go time, and you started to get to treatment. And so what I really try to help you to understand is you have to understand the right diagnostic test to get done, you have to know the specificity of your cancer. And once you know that specificity, it's not just knowing your breast cancer, it's what kind of breast cancer. It's knowing your biomarkers, then that will help you through the treatment approaches. And then the third is survivorship which I talk about quite a bit. And I always say like everybody says oh ring the bell and high five your doctor on your way out of treatment. But it's not that easy. And it's not that simple. Survivorship means like you're still healing, your body still healing, you're emotionally still healing. And the rest of the world wants you to go on. And they're moving on. And it's a very, it's a, it's a hard time where many patients go into depression. And so you have to be aware of it and be kind to yourself and give yourself time before you get back to real life again.
Melissa Ceria [00:14:48] And you acknowledge that moment of depression for yourself at one point.
Kathy Giusti [00:14:52] I did, because I think it's really important for people to understand when you least expect it. Like when you're supposed to be happiest, all of a sudden you're still getting hit emotionally. And I think that's a lot of what I've tried to do in the book is be brutally honest, because I think it's important for patients to understand I had everything going for me. I had great insurance, I had a great job, a great husband, great kids, good friends, and I still got it wrong. I still got it wrong. I did things wrong. I f you're struggling, it's not you, it's the system. It's a very challenging system. And so the steps are there to guide you, but to also be your companion on the journey because it can be lonely. And I want you to kind of read it and say, I'm not going to do it exactly like Kathy did it, but she jogs my memory to think I should try this or try that.
Melissa Ceria [00:15:45] I mean, I won't hide it from you that there were several moments in the book when I thought to myself, my goodness, managing illness is a full-time job. How are we supposed to find the time for all this?
Kathy Giusti [00:15:59] That's the problem. It's. It's a full time job. Partially because the system is broken, partially because cancer's a very complicated disease, and partially because we don't have the systems set up to guide us through this. I don't think it should be so hard when you get to step one to understand that you can go to cancer.gov. You know, .org, .com, like you, and all these sites are really really good places to start. But I don't want you to spend hours going down rabbit holes that are going to give you bad information. So right from the start of the book, the whole point is to say, T his is where you need to go. This is how you get started. And to build it from there. I don't think that managing illness should be a full-time job, but in our system today it is, and you're adding a full-time job on top of everybody else's full-time job.
Melissa Ceria [00:17:01] Yeah, because in the past, our grandparents, let's say, followed their doctors’ recommendations. Today, patients need to take this active role in researching and managing their treatment. I mean, have we now become our own Chief Health Officers?
Kathy Giusti [00:17:17] Yeah, we have no choice. We had to become our own Chief Health Officers for a really good reason. And that reason is the science is moving incredibly fast. So that's the good news. Like if you get diagnosed with a certain cancer and you really look at the research, there's so much happening between gene therapy, immunotherapy, precision medicine, that odds are there's things happening in your cancer. If you don't know about them, you could miss out on them. And if you rely on your oncologist who went to med school for all the right reasons to give you all that information, that's crazy in today's world, because there's no way with hundreds of types of cancer that your oncologist can say on top of all of them, it becomes your job, and if you're not comfortable doing the research, you need to find somebody to do it with you and for you. Because you’ll have major FOMO, you could honestly miss out on an incredible clinical trial or something that could extend your life to get you to the next drug.
Melissa Ceria [00:18:19] This is not necessarily covered in your book, but I'm curious, are you hopeful about AI and its role?
Kathy Giusti [00:18:26] Absolutely. I think AI is going to help health care and the patient in every single way, whether it's the imaging side that we're seeing with breast cancer. L et it work in terms of being able to diagnose early breast cancer faster. It's also huge in its ability to do drug development. The amount of time we spend trying to find the right target and the right drugs for the right target is critical. And then think about quality of care. If you can use AI to understand what are the side effects of these drugs, how do we manage them and do it in a precision way that will make the patient's life so much better? It's a huge opportunity.
Melissa Ceria [00:19:05] And do you think it can also accompany us in terms of reassuring us, providing context or maybe feedback when we don't have access to people that can support us at a given time?
Kathy Giusti [00:19:16] I think it can, but I think right now the way AI is really working is it's providing the clinicians with an ease in a system. So if you're sitting there and you're doing imaging work and you're in the hospital setting, now at least you have more information around you and you have a little more time for the patient. So I feel like for me, the AI side, the patient's not going to directly see at first, what they're going to see is how it supports their clinician and how it makes the clinicians life a bit better.
Melissa Ceria [00:19:50] Everyone responds differently to a health crisis. You decided to take action and to establish the Multiple Myeloma Research Foundation. Your efforts have raised over $500 million. Is that correct?
Kathy Giusti [00:20:03] Correct.
Melissa Ceria [00:20:04] Which is a remarkable achievement, Kathy, in advancing research for this underfunded cancer. How did you make space in your life for your illness, your foundation, and your family?
Kathy Giusti [00:20:17] Well, I would love to tell you I did it well. And I think you could tell by reading the book, I didn't feel that I did it. Well, here's the situation when I talk about the calendar in one hand and the journal in another, it really symbolizes I was trying to save my life while trying to live my life, and the calendar was saving my life, and the journal was living my life. And so when I started the foundation, it was because there was nobody working in the field of Myeloma so my identical twin sister and I said, this is crazy, like, we could raise money and at least jumpstart research, and maybe, you know, I'd live long enough till Nicole was five and she'd remember me and that was the whole goal. But as I started moving, again, I had an amazing background to start a disease foundation. I had worked in the pharmaceutical industry. I had a Harvard MBA. I'd never run a nonprofit, but I knew how to run divisions of companies. So we started off, and we just became incredibly successful at raising the money. And I do credit many Harvard Business School classmates for getting us off the ground early. And so as a result of that, we started seeing progress fast, like we started putting grant funding out, and we had scientists come into the field of Myeloma. And then I would sit with them using my business background and say, okay, what is the biggest obstacle? And together we would decide, well, if we don't have tissue, we can't understand the biology of the disease. So we would build a tissue bank. And I think having that business background allowed me to move forward. What was going on, though, was I was now starting to see the success of the MMRF and its ability to bring new drugs to market. So, we went from nothing to Lenalidomide to Velcade to Revlimid, amazing drugs that were extending patients' lives. And in some ways I was like, success begets success. I kept thinking, I'm going to be on these drugs. And once I was on those drugs, I was thinking, I need the next drug. And so it becomes almost, I don't want to call it, it's not an addiction, but it was a passion of, oh my God, this model is working and it's saving my life and it's saving everybody else's life. And I think what I started missing as that progress was happening was then my ability to say, okay, I've done a lot. There's a lot of progress here. Let me sit in the moments that I need to enjoy with my family because, you know, now my children are getting older and instead I was all over the country. You know, in order to raise half of 1 billion dollars, you have to see every donor. You have to talk with every donor. You have to be everywhere. You have to be speaking. You have to do public relations. And back then you were always on a plane. And so I think my regret was not being able to kind of take the pie and say, okay, maybe I'm not splitting it quite right in terms of time with my family versus time with the foundation versus my own medical needs, because all three were a challenge for me, and I don't think I split the pie quite right.
Melissa Ceria [00:23:19] You know, over time, it becomes clear that patients really begin to rely on you. You're fielding calls from people all the time, and they were calling you because, well, they wanted your advice and your support and you had become their North Star. But what's interesting is that in hindsight, you write about the fact that you were losing track of some of your own priorities. I almost want to say that you had lost your own navigation system a little bit in terms of what were your priorities. Can you describe that duality, the moment at which you realized, I'm essential to some people, but maybe I'm not meeting the needs of others.
Kathy Giusti [00:23:52] I think I knew it as my kids were getting older, but I also think I really saw it when I read the journals back. And when I realized when I read the journals back was that I had no boundaries. And that was, that was on me. It wasn't on the patients calling me or donors needing me or anything like that. It was completely on me not having boundaries. So if somebody said to me, I really need to talk to you, you know, are you around tonight? I would always say yes. You know, if they said, I'm working, can I talk to you over the weekend? I would always say yes. And it wasn't like, if I had said to them, Can we talk on Monday? They would have been fine. But I knew the urgency they had. I knew they were scared. I knew they were full of fear because when patients are calling me, it's either they've just been diagnosed or they've relapsed and run out of options. If patients are doing really well, they're not calling me. I could feel their fear and I wanted to be available to them right away. So without boundaries, I did that to myself, and looking back, I wished I'd had set them up in a better way, to be honest with you, so that on those weekends I was spending more time at my kids’ games and not being distracted. I always said like, it wasn't like I was a bad mom, I was doing the best I could, and I don't think my kids would ever say that, but I did feel like I was distracted.
Melissa Ceria [00:25:14] Looking back, what three adjectives would you use to describe that time in your life?
Kathy Giusti [00:25:21] Y eah, those are three words I would use are, one distracted, two passionate, and three loving. I think my kids would say that because they knew how much I loved them. There was never any doubt of that. But all it took was them, you know, me driving them to a game or a cheerleading competition or whatever it may be, and phone calls coming in and they're literally listening to me take the calls and do that kind of work. It wasn't like they didn't understand, they did. And I think it was interesting for my daughter at the end when I was writing the book. You know, you'll see in the book, she said, I feel like an apology is due to me. You were distracted. And she said, but at the same time, I feel like when somebody is given the gift of being able to do something as powerful as curing cancer, then it's kind of up to me to share my mom. And I thought that was really compelling on her part. I think my son would be more likely to say that if they learned anything from me, it was tenacity, and that if you really believe that you want something and you think you can go for it, then you should. And I think they probably recognize that part.
Melissa Ceria [00:26:39] Was there a moment when you realized, my goodness, I have such a deep sense of purpose now that I didn't have before.
Kathy Giusti [00:26:47] You know, it was really when I remember being at a major medical meeting and all of a sudden we had gone from nothing in this field of Myeloma to three amazing drugs, you know, getting into clinical trial. And patients, just like when these calls were coming in, instead of my having to hold their hand through the hardship and the fear, I was now moving them to something so promising. And I remember thinking to myself, this is an incredible time. And at the same time, it was the ages of my children when you know there are five, six, seven, eight and that things are able to accomplish at those ages, they were flourishing and growing too. There was just this world of life around me, and so I felt like the purpose of curing Myeloma was there, and the purpose of building them to be safe and sound, that no matter what happened, I would feel like I had lived a full life, even though I was still incredibly young.
Melissa Ceria [00:27:48] Community plays such an important role in your recovery, and you write about it. You write about how your family and your close group of friends supported you, and there is research that indicates that loneliness can heighten mortality risks among cancer survivors in the US. Can you talk a little bit about the crucial significance of social connectedness during treatment?
Kathy Giusti [00:28:08] Yes. I had everything you need. Like my husband was amazing, took me to all the doctors appointments, and my sister was incredible and so were my kids. But I'm always acknowledging that if you have one person that you can talk with, they can hold your hand when you're going through treatment or can listen to the doctor’s discussion with you, you're going to be okay. But the whole point is making sure that you build that community out, because one person can then lead to two people, can lead to three people. And I think the greatest gift I had is the ability to build these amazing relationships around me. The part that you're really talking about is my group of eight friends, and that came about not because I was so brilliant, but because a counselor had said to me, there are a lot of things that you're going to talk about on your cancer journey with your husband. Your children are still really young. Your sister doesn't want to take on the whole burden, so you should reach out to your friends now as you move into Stem Cell Transplant and ask them to help you. And it was the best advice I'd ever been given. I called them and said, hey, will you guys meet me for lunch. We all worked. Just setting up time for lunch was no easy feat. And in today's world, here we are, all these decades and decades later, we are all still together. And it's not my cancer that we're dealing with. Two other of those women have had cancer. You know, there's so many things that go on in our lives, sick children, anything. And we've all been there for each other. So I always say to everybody, Ask somebody to help you build your small team, but you're going to be amazed at how it'll come back and how great you'll feel when you actually get back to them.
Melissa Ceria [00:30:12] Your book ended differently than I had thought it would, because decades later, and you've touched on this already a bit in our conversation. But when you're diagnosed with breast cancer, it dawns on you that cancer was really taking a toll on your family and you really reflect on becoming aware of this. I'd love you to talk about that moment when you thought to yourself, and these are your words, maybe I didn't handle it as well as I thought I did, although I would argue that you handled it very well. But for you, it's a subjective feeling, and it's obviously informed by what you were seeing around you. How did that self-awareness happen?
Kathy Giusti [00:30:48] I think it happened when I was reading the journals, and I realized everything I had taken, especially from my family. Like my husband gave up so much from the day I was diagnosed. He had started a small company in the Midwest and he had to sell it back then. You know, we didn't have the internet and everything was in digital and had to sell it so we could move east. We moved East so that my sister could help raise our two children, but you could see all the things that were being sacrificed along the way. And again, we thought it was a three-year journey, like I was going to die in three years. But my journey kept going and my husband kept giving. As my kids got older, they had to give up things too. And so I think what I learned by reading the journals was maybe I wasn't the nicest person. Maybe I took more, and maybe I believed that the Cancer Card trumps all, you know? And another example I give is, that I'm doing a Stem Cell Transplant, and my sister's going through a horrible divorce. Well, Cancer trumped divorce. Is that fair? I don't, I don't think so. And so I think for me, and I laugh about this, I mean, how many searches did I do on Multiple Myeloma, Breast Cancer, Leukemia, Pancreatic Cancer, whatever it might be to help other people? I never once did a search on relationships. And so, I literally, while I was writing the book, immersed myself in understanding relationships better. I studied Brené Brown, John Gottman, everybody. And I was like, oh my God, this is how I'm supposed to be. And I, you know, again, my curious mind took over to say, I think I was angry at the system and I would bring that anger home. I was angry that we weren't curing cancer fast enough, and I was adamant about it, and I was going to be the patient speaking to it and letting everybody have it. And that was probably why I was so successful at, you know, helping to find cures for Myeloma. But it's not necessarily the best way to build your home life. You know, my sister would often say soften your edges. And she was probably right, you know, and my reaction would be, I can't like, I've got to get this done.
Melissa Ceria [00:33:17] Were you hard on yourself or forgiving of yourself when you got to that point?
Kathy Giusti [00:33:22] I was really, while I was writing the book, really hard on myself. But then I learned to forgive myself. You know, they always say, if you have to create change in yourself, the best way to do it is with a buddy. I feel like, the same thing in Cancer. If you believe you want to get through the journey, find one person that you know will be by your side. I was very fortunate to have one of my eight, who was one of my closest friends, had been going through a lot, and she had to change. You know, we just got through it together and I felt like if I wanted to change, I needed that help. You know, people today probably don't recognize me as the person I had to be back then because I had a goal, I had to stay alive and I had to help everybody else stay alive. Now I feel like there's an amazing team at the MMRF. There are amazing people, you know, working in foundations that have learned from our model, and it's time for me to have some of those boundaries around me. And if I have them, then perhaps I can build better relations. I don't think you can ever be too old to improve your relations with everybody around you, and I think it's probably the greatest gift I got from writing the book, was we can always be better.
Melissa Ceria [00:34:37] I agree with you. And we can always grow and evolve, and you remind us of that. Are you surprised by the course of your life?
Kathy Giusti [00:34:47] Yes. I never, I never dreamed it would go in this direction. And I would say that, I can look back now and say it's been an incredibly blessed life. I mean, most people don't wake up in the morning and feel such a sense of purpose. You know, most people don't get to take a phone call like I took yesterday. A woman who is struggling. Her husband had just been diagnosed. They were lost, and by the time she's been 15-20 minutes, again, she was in tears, like, how did I find you? How were you able just to make this so clear? So to have this gift of being able to share with patients, this is what you need to do is amazing. But now, you know, fast forward, I have two great kids, both engaged, and like with great partners and a great dad. So like, you know, when you look back, you say, this is where I wanted to land, but it took me a long time to get here. I mean, let's face it, you know, and I'm over 65 at this point, I hope that, you know, for a lot of people reading the book, they learn from it at a much younger age than I did, so that if you get diagnosed, like, you can do all the things I did and you can do it a heck of a lot faster than I did, and you can understand the balance of knowing your disease and knowing your relationships. They're both equally important.
Melissa Ceria [00:36:09] There's a lot of hope in this book because there are rapid advancements in science, and because we are far more resilient and adaptable than we think. What else feels hopeful to you?
Kathy Giusti [00:36:23] I think what feels the most hopeful is looking at the next generation. I look at the scientists, the clinicians, the nurses, and I will tell you they are not like old school. They are much more collaborative. They're much more determined. They're much more savvy technologically. So I feel like there's a tremendous amount of hope that comes from not just the science, but the clinical aspects of dealing with cancer. I think on the side of the patient, where I think they can shine, is understanding there is tremendous hope, but it's in their hands and it's their empowerment that's going to allow them to live and live a special life. And I think the third part is you're not going to ever do it alone. You cannot beat cancer alone. So find that one person, two people, the caregivers that are going to get you through this because they truly are often the unsung heroes that allow you to live this blessed life that you finally, you finally get.
Melissa Ceria [00:37:32] Kathy, thank you so much for taking the time to speak with me and for your incredible work. I wish you all the best as you continue to advance research and to provide patients and caregivers with the support and the information that they need.
Kathy Giusti [00:37:47] Thank you, Melissa, and thanks for helping to raise awareness.
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