Podcast Episode 36: Kathy Giusti

ALISON : Hey, there. How you doing?

JEAN : I’m wonderful. How are you?

ALISON : Good. I learned how to turn this on so nicely.

JEAN : You are getting so great at at being able to turn on and off our recording system.

ALISON : It’s, you know, it’s a real skill. It really is truly a skill.

JEAN : Well, better you than me.

ALISON : That’s right. That’s exactly right. And today we are talking to Kathy Giusti. And she is the author of,  Fatal to Fearless – 12 Steps to Beating Cancer in a Broken Medical System. And I have to tell you, she has done so much in her life. It’s amazing. She has started a multiple myeloma research foundation (MMRF). She’s worked with presidents. She’s worked on committees to pioneer new drugs at Harvard. Right. It’s amazing.

JEAN : Pharmaceutical executive for major companies. I do not know how she finds the time to to accomplish everything she does with such brilliance and heart. Right?

ALISON : How does she shower?

JEAN : Like maybe she hasn’t, like a special car. A car as she’s driving to work, that kind of dresses her and showers her, that wipes her down because she’s amazing. I felt a little on the slacker side, like I’m just not doing enough. But I think she speaks to that point a little bit at the end of her book that, um, you know, we do all have to embrace where we are in life and, and honor each other.

ALISON : And, and I love people that have embraced their powerhouse.

JEAN : Yeah. I mean, she was perfect to write this book. She came from such a wonderful background of the medical recovery.

ALISON : Yeah. And remission twice with cancer. Right,  and it’s just a very interesting story. And it’s a memoir and a sort of a guide.

JEAN : And a workbook. Right. And I do wish I had had this book when, when Alex was diagnosed. And it would have been helpful. Um, but I’m so looking forward to interviewing this brilliant, beautiful woman.

ALISON : That’s right. Okay, here we go. Okay.

JEAN :  This is so great. We’ve been really looking forward to meeting you, Kathy. And my name is Jean.

JEAN : And I’m Alison.

KATHY : Hi, Jean and Alison.

ALISON : Thank you so much. Your book is just, uh, wonderful. Uh, I couldn’t put it down.

KATHY : Oh, good. I’m glad.

ALISON : And the memoir part really spoke to me because I really feel like I got to know you and your family, and I found it very moving and very, um, accessible.

KATHY : Yeah, I think that happened because, you know, I started out with writing a what to do book and, um, the publisher really wanted it to be a what to do book. But, um, you know, in writing it, I had to go back and read all of the journals that I had started writing for our daughter Nicole, when she was just one. And when all of a sudden you’re going through all the journals, you can kind of read between the lines, and it’s what I said, you know,– I know what I did right, what I did wrong, and what I didn’t do at all. And, you know, you really it takes time to just sit and reflect on all of it and on the on the impact it has on family, which obviously, you know all too well.

JEAN : Yeah. Yeah. Well, reading your book, I did think to myself, wow, I could have used this book and, and have already shared your book with, with a friend. So thank you for taking the time to do this book.

ALISON : My brother in law passed away just recently from multiple myeloma, and…

KATHY : oh, I’m sorry.

ALISON : Yes, and I’m reading this and I’m crying and I just thought, you know, thank goodness for you. Like, the impact you’re having on so many people is like, are you aware of that? Like, like what is that feel like as a human being?

KATHY : You know, I  think it’s one of these things where,  you just have to believe things happened for a reason, for some strange reason. Right? And I think I had this ideal background, kind of crazy to take on the medical system.  And if I didn’t have the right background to do it, I’m not sure I could have been as successful as we were. So I, I definitely got the sense of the progress in myeloma and how many lives we were saving in that field. I think it was when I went on to teach up at Harvard Business School and worked with all the other foundations, um, that I really started to see the impact of our knowledge and how to build really innovative nonprofit models that I could see the impact across all cancers and even all diseases. It’s really good to understand the physical journey that cancer will take, but I think the book took me one step further, unexpectedly, because I’m really quite a private person to share, um, that it’s all about relationships and, you know, the impact that disease can have on those relationships. And I think that became kind of the third leg to my stool of, okay, here are the things I hope I can give back.

ALISON : I think it’s um, I think your book is a love story.

KATHY : Yeah. Somebody said that to me. They said somebody said they felt it was a love story to my family and friends. Right. Um. And I felt, um, that it was more of a love story that i was writing to the patients.  Because, um, you know, really, I think what threw me off so much, you know, you can read that book and know that I was feeling like, oh, my God, I was so urgent, so passionate, all of these things. And it took a toll on my family. And so I had regrets about that in the book. But I feel like I know what it’s like to be a patient, and I know what it’s like to have that knot in the stomach. And I know the fear that you have. And so I had no boundaries. If they had just gotten diagnosed and wanted to talk to me at 9:00 at night, I talked to them at 9:00 at night. If they wanted to talk to me on a Saturday, while I was driving David to a baseball game, I would take the call just because I knew how scared they were, and I didn’t want to make them wait. But, you know, on the other hand, you know, boundaries are probably a good thing. And I think the patients have been completely understanding. If I said, can I just wait and call you tomorrow morning? Right. So, you know, these are just lessons learned in life, that you think everything is urgent. You think you’re the only one that can do it. You’re the only one that’s going to make them play right in the sandbox. And then you realize, you know, there are other people just as smart as me and as capable as me or can be trained, you know, to work with me and have that same kind of attitude and approach.

JEAN : It is a it’s amazing how cancer or any life threatening disease really throws your your perception of life into what’s important. And not only the patient, but all, you know, the orbit around us. Um.

KATHY : Absolutely. And I think, you know, what you find is, you know, there’s over 100 types of cancer, right? So it doesn’t matter which one you hear. All you hear is the word cancer. And all of a sudden, you know, we all say like there’s life before the day you got diagnosed, and then there’s life after. And you just wish you could go back to that life before. But you’re not allowed. It’s it’s not going to happen. You have to do your best to make the life that is now given to you. And I think the other thing is, for those of us that really understand oncology, we know that one cancer is not another cancer. And you know that pancreatic is tough. Brain tumors are really tough. And so there’s some cancers that are they’re just really challenging. And even today in this world of amazing immunotherapy, which is making a big difference, not every cancer is responding the same way to immunotherapy. So some cancers see more promise right now than others. And I think it’s important for patients and caregivers to know what’s going on in the field and stay in touch with all the science.

ALISON : Right. Do you feel there’s, um do you feel hope? I got hope from your book, but do you do you feel like because you’re faced a lot with this and just your life, do you feel hope?

KATHY : Yes, I do. You know, it’s funny, um, I always say that when people call me, when patients call me, they call me and either they were just diagnosed and they’re scared, or they run out of options and they’re scared. If people are doing well, they’re not calling me. So my job really is to, you know, first of all, make sure I can calm them down and then take the steps that you see in the book to try to help find them. You know, what is the next action that they can take. I find that by putting things into simple steps for patients and saying, okay, I know you’ve read all this and you’ve been to every site and it’s a little overwhelming. Here are the three things you need to do. And I just think by keeping things very simple and telling people where to keep moving forward, that’s where the hope comes from, that they’re starting to move through the process, and they feel a little more confident. They’re willing to ask their doctor more questions. They’re willing to say that the drug has side effects, whatever it might be. And so I think that confidence builds hope. And then the second part is there’s a huge reason for hope that is based off the science.

KATHY : So when I was diagnosed, you know, that was back in 1996. And, um, you know, science moved so slowly, so slowly. And in today’s world, you know, things, you know, back then it was $1 billion and ten years to get a drug to market. And in today’s world, it’s happening so much faster. You’ve got gene therapy, immunotherapy, genomics. There’s just so many ways you can go. And now even with AI, drug development will start happening much faster. Imaging will get much better. So when I say there’s reason for hope, the the hope is coming from the amazing scientists, pharmaceutical companies, everybody out there working on it. My biggest fear and why I wrote the book was now you have a lot more to miss out on. You know, if you’re not on your game, you’re going to miss a clinical trial that might extend your life, that could extend your life until the next drug comes out for you. And I just felt that that game of FOMO in, you know, treating cancer is a dangerous game. And I wanted patients and their caregivers to know you can beat the system. You just have to know the steps to do it.

JEAN : Can you give our listeners three really great tips what to do upon a diagnosis? Because you say that (in your book) and, but you’re they’re wonderful. And I wish I had known those.

KATHY : And I know, I would say the three tips, like when you read the book, you’ll know that it’s divided into three parts. So the first part is you’ve just been diagnosed. The second part is you are in the thick of treatment, and the third part is you’ve finished your treatment and now your so-called survivor. So in the first part, when you’re diagnosed, what I recommend to everybody, number one, is to Google wisely. And that means you don’t have to go everywhere. There are very good sites in oncology, the American Cancer Society, Cancer.org, um, the National Cancer Institute, Cancer.gov. So you can go to the cancer sites and they actually are highly credible and highly reliable. The second piece is then you have to identify within your cancer. Is there a foundation, a disease group specifically focused on that cancer? You would be amazed, i mean, here we are decades later in the field of multiple myeloma, you would think that every myeloma patient has signed up at the MMRF to get our newsletter, our updates on clinical trials, whatever. It doesn’t matter whether it’s the MMRF or Pancan or Lustgarten or any of these organizations, we don’t have nearly the percentage, high percentage of patients that you think we would. And part of that, because they don’t know we’re out here.

ALISON : Yeah.

KATHY : And that’s what’s really scary. Like a lot of patients don’t know that there are disease groups specifically focused in their disease. So I always say make sure you find a reliable disease foundation that can then concierge you much better to that specific cancer. And often like at the MMRF we have full time patient navigators. I mean they came out of the best hospitals and they will walk you through from the moment of diagnosis all the way through trials, everything you need. And they’re amazing nurses and, you know, they’re they could be utilized even more than they are right now. So that’s go to the cancer sites. They’re really good. Go to the disease groups and register. Give them your email. Otherwise you won’t get the information. The other is get a second opinion. You have to get a second opinion. And the third is know your insurance. Like you would think. Someone like me, who has lived in this field and breathed the medical field for all of my life, that I would have this right. And one of the reasons I wrote the book was to share with you. Like I had everything going for me. Everything, the right husband, the right kids, the right friends, the right insurance, the right job and i still messed it up. I still messed it up and in areas where I often messed it up was insurance, um, paying out of pocket.

KATHY : Um, going to my breast cancer doctor, going to…. I thought my surgeon was, um, in house. You know, you get hit with huge surgical bills. And I’m thinking to myself, if I’m not tracking this. Yeah, I always say, everybody know your insurance and make sure you call them. It’s not enough to just think that you’re covered. Make sure you talk to them and say, where should I go? Is this covered? And then fight for what you want? Which leads me into the second part of the book, which is the treatment. When you’re trying to get the test done, whether it’s genomic testing, biomarker testing, anything, you often have to keep asking for it. So like in multiple myeloma, we often have to ask for Pet scans. The insurance companies don’t always love it, but they’re really good at helping us to know when and when to get treatment and how we’re doing. And then when you get into the stage where you’re actually looking at the treatment side, that’s where we really say, you’ve got to make sure you’re building that team around you. Your medical team has to be amazing, and your personal caregiving team has to be equally as strong, because now you’re in the thick of it. You know, you need somebody to help with your kids, your parents, everybody there.

KATHY : Um, so we always say that that part is the most important part when you’re in the treatment side. And then when you get to survivorship, kind of what I say to people there is um, I know we all ring the bell when we finish chemo and we high five after. But it’s not like that. You take these really tough toxic treatments and they’re hard. Or you do a really tough surgery and people are like, okay, you got through that now you should be smiling and everything should be great. And I’m going to head back to work and we’re going to go do this. And you’re sitting there going, I have not healed. I’m sad. What’s wrong with me? And it’s very prevalent time of, um, depression. So it’s important that people know that. And then then you have to also be tracked. You don’t know how deep your remission is. So you need them to do more testing to tell you so that, you know, if you need more chemotherapy, anything to go along with the surgery you just had. So the journey doesn’t end. It’s just a cycle. It’s a cycle. And and patients still live in fear of relapse. It doesn’t matter how many times you get a good test result, you’re still scared every time you go to Sloan-Kettering or Dana-Farber or wherever.

ALISON : Yeah. Do you um, I thought it was very interesting about the clinical trials. You say at one point, know the point of the trial.

KATHY : Yes.

ALISON : I had never even thought about because some you’re like some are trying to see side effects. It’s not all just like about curing the type of cancer you have.

KATHY : So I think, you responded, you actually both were talking about this. This is really, really important. So when all of a sudden someone gets diagnosed, then everybody kind of comes in and tells them every story about where they got treated for their cancer. And here’s the best doctor for you. You start listening. But the truth is, cancer centers are all really good at specific cancers. It just depends on how their departments are built. Like, you know, we may have great hospitals in New York that focus on myeloma, but they may not be just as strong in pancreatic or glioblastoma. So you have to know which center to go to. First of all, that’s really important. And then the second part is you have to know who’s doing the best clinical trials. So that depends on who has a great clinical background at that academic center. And if they have a great background, then the pharma companies are coming to them with amazing clinical trials. But then as a patient, you have to understand a phase one trial means they’re still trying to find the dose. So like when you were saying all these clinical trials were coming his way, like you’re saying to yourself, well, how do I know which one to put them on? The truth is, you know, you have to look at the inclusion criteria.

KATHY : Can he even get in? Right. And this is this is hard stuff to read. You’re supposed to go to Cancer.gov and start reading this yourself. It’s this is why we have navigators, you know, at the walk you through. So you have to know the inclusion criteria. You have to know if it’s phase one, phase two or phase three. At least you know when you’re getting out to phase two, they know the dose. And at phase three, you know, now you really are in a very strong clinical trial. At that point, you’re really trying to understand the efficacy of the drug versus the standard of care. So you want later stage trials. You want trials that are near you. You don’t want to have to go crazy getting to them. Um, and you want to make sure that that drug looks highly effective and it’s hard to know.

JEAN : Yeah, yeah. For sure. And the other thing is, I think most people I mean, I would, I would assume that my doctor knew how to do all this. And like you say in your book, these, these brilliant doctors have like 13, 16 minutes to really be with you. Yeah. So you really have to become your own advocate. And, um, just the language alone in the medical industry is so overwhelming. And that part for me was, was very challenging and I remember clearly feeling like a deer in headlights, like what, where do we begin? And, um and everyone’s personality is so different.

KATHY : It’s all so complex, you know, and they use all the acronyms, and it’s really hard…

JEAN : Oh, that’s right..the Acronyms!

KATHY : It’s just so hard to stay on top of it. And so you have to understand who you trust to kind of help you sort through all this information that’s coming your way. And you hope it’s your doctor. But you are right. The doctors have limited time to focus on what the patient’s. The good thing about going to an academic cancer center is that they tend to specialize in certain cancers. So if you’re seeing somebody there that’s a hematologist oncologist, odds are they’re just strictly focused on myeloma or leukemia or lymphoma. And I think what happens a little bit more as you move out, you know, to the community centers, which are, again, still great doctors and 70% of cancer care is done at the community, not at the academic centers. Um, those community doctors have to know lots of cancers. So every cancer is making progress. And if you think that it’s up to your oncologist to stay on top of your type of cancer and then your specific subtype of cancer, like, there’s just no way. So it really is on you these days to stay on top of it for sure. Absolutely.

ALISON : Do you think, um, it’s important to get genetic testing or do you think it’s like I’m going to be transparent, because you were, I’m a worrier… So I’m afraid that if I get genetic testing, uh, I’ll be like, oh, oh, like, oh my gosh, can you give me some advice about that? Because my other friends going through it too.

KATHY : So, well, first of all, just remember there’s two types of genetic testing. One type of genetic testing is to understand what genes run in your family. So in a situation like that, if there’s risk in your family, for example, a BRCA gene and breast cancer, um, you definitely would want to know that. So I always say to everybody, you have to know the history in your family. You have to. And that way you’re able to tell your doctors that it runs in your family, and they can then make sure you’re being screened appropriately. The second type of testing, just so the listeners know, is that when you actually have cancer and you have a specific tumor type, they will do testing on that to identify what kind of genes are turned on and off in your specific tumor, and that will help them to decide treatment.. In your specific situation where you’re trying to say, I’d like to know if I’m prone to cancer, um, but I’m going to worry about it a lot. I would say to you, I would focus more on your family history right now and make sure you’re very aware of any, any risks at all that are going on in your family. And then secondly, I would just say there are so many ways to continue to prevent cancer that I would focus on them. I mean, it’s not complicated. I mean, you know, minimal alcohol, eat healthy, exercise, don’t gain weight. I mean, these are not crazy things that the world is asking us to do. And then I would say the third thing is there are tests that are just starting to be developed.

KATHY : They’re not covered necessarily by insurance quite yet. Um, but they’re getting better and better and better. And over the next number of years, I actually think this is one of the places that’s really going to expand in cancer care. I feel like, you know, my kids are in their late 20s now, and I kind of ended the book, you know, in a full cycle with them where they now know cancer runs in our family like crazy. So, you know, I said to them, you need to see a great primary care internist that’s on it. And they do. And I just say to them, you have to watch for every single sign. And if and along the way, your internist feels that there should be testing done earlier, do it. But, um, you will find there’s going to be some amazing new blood tests that come out that will literally tell, you know, the next generation, whether they have any kind of early cancer cells going on. It’s a vast and growing area. I wouldn’t say it’s there quite yet. They don’t have all the genes that they’re following. There’s still a lot of false positives. So then I worry about people like you that might worry more. Um, you know, so but I would say know your risk be really healthy. And three, keep an eye on these new diagnostic tests that are going to help us to identify what’s happening in our bodies.

ALISON : Thank you.

JEAN : There’s so much information out there, Kathy, you know, it’s like going to a huge shopping mall. You don’t even know where do I begin? And um, so another thing I love in your book is that you talk about the caregiver, which is so important and it’s essentially vital to the healing of the patient. Um, your family

ALISON :  You’re eight friends, i would love to meet them..

KATHY : It’s really funny, though. Think about it, um, the way that developed was my talking with a counselor, and again, I was headed to the second part of the book. It was Go time. I was working full time, two little ones, and now I’m headed to the stem cell transplant. I’m going to be in isolation for weeks on end. My sister’s my donor. She has three little ones at home. Like, how are we going to pull all this off? My husband has work, too. And so I went the counselor saying to me, they’re just going to be some things like your husband’s a great caregiver, but there’s just going to be some things that you, you want to share with your friends, like you need help. So just call them like, yeah, just call them. So I did, and it was funny because we all worked. But we ended up doing this lunch. And so we just stayed together through the whole thing. And like some of them were just again, when I in the book, I talk a lot about on caregiving, you always need to write down what your needs are. Your needs are the immediate, like, oh my God, who’s taking care of the kids? Who’s cleaning the house? Who’s walking the dog? Like the immediate stuff that you think, I don’t know who’s going to do this anymore? And then there are the wants. Do I want to stay working? Do I want to see a wedding? Do I want to travel the world? Like, what do I want to do? And I always say, line your caregivers up so that they’re doing what they want to do and what they’re really good at. So of my eight, there are some that are amazing cooks, like just incredible.

KATHY : I mean, they just fed our family while we were gone. And then there are others that just love to drive. And they, you know, they had time to do it. And then there were others, and I always say this to everybody like, don’t ever ask me to cook for you. You will be very disappointed. But if you say to me, Kathy, give me, give me two hours and go research everything you can find on my specific cancer. Now you’re giving me a job that I like, that I can do for you and hand it back over to you. And it just got done. I think that patients forget, um, it’s their job to delegate out to those that care about them. And it’s a gift. Like, of the eight, I think three of us have now had cancer. So, you know, I tend even though they were helping me, I turned my bag of scarves back over to them, gave them all the blankets like everything goes around, comes around. And then we’ve been together on anything that comes up. It could be sick parents, dying parents, you know, how do we handle all these things? And we’ve just all stayed together, which is it’s an amazing gift. We all talk about the importance of these relationships, but, um, I put effort into it. And I think it’s important in the book to also note that it doesn’t need to be eight. It can be one, right? You don’t need to have eight. You know, like I was really fortunate to have that. If you have one, that’s all that that’s perfectly fine. Just work with them as best you can.

ALISON : Right.. That’s what I loved, I loved that and can I just ask you about you for a minute? Like, you know, when you were saying that when a patient gets, you know, that fear, so what do you what did you do with that? Like do you meditate? Do you? I know you were journaling for your daughter. Has she ever read the journals?

KATHY : It’s so funny. I just got this question. Um, my kids laugh and say we can’t read your writing. Number one. Um, I think they said if you their response is, if you want us to read them, we’ll read them. But for right now, they really don’t have any interest in reading them. I think, you know, my mom recently passed away, and it was at that moment that, um, my sister and I were going through all of her things, and I just remember sitting on the floor and just reading and reading every card, everything she’d ever saved. And I can just kind of think that’s probably at the point at which my kids will do it. It’ll be funny because they’ll be doing it when I’m not here. Right. Um, but you know, they kind of view the book to be the cliff notes, so…

ALISON : Exactly. That’s right.

KATHY : So they can they can cheat and read that. haha

ALISON : Exactly. This is what you read before the test. haha

KATHY : But in terms of like the, um, the gut wrenching feeling and by the way, it doesn’t have to be the patient, it can also be the caregiver. Yeah. I mean,  when somebody calls me, like even my twin sister and, um, at one point, I remember she had elevated liver enzymes, and she had me completely convinced that she had metastatic breast cancer. And I, I mean,I couldn’t eat, I couldn’t do anything just for a period of time, but, you know, we are amazing human beings and somehow we find this way to compartmentalize. I can’t tell you how many times living with myeloma for so long and running the Myeloma Research Foundation, I would get horrible test results. And then I’d have a huge event where I had to speak in front of hundreds and hundreds of people. And I remember calling my friends one of the eight and just saying, I can’t do this, like I can’t do this… And they would literally walk me through it and help me get back on my path. And, you know, everybody says, go for a walk, go for a run, go do a yoga class. And I do. And I always say, people say, well, what else do you do? And I always say, I’m completely neurotic about my sleep. Neurotic. I’m just like, just please give me give me those eight hours. I’ll take it. And your immune system builds while you’re sleeping, so it’s really important to do it. I eat healthy, but I still also go for a walk, usually out in a park or somewhere in nature, um, every morning. And just try to keep your head in the game. And I think those things are, are critical.

ALISON : Because I’m amazed that what everything that you’ve done and went through, I was like, oh, man, you know, we were recording your intro this morning and I said, how do you even have time for a shower? Like, you’re amazing.

JEAN :  Just being a mom… and being an executive and yeah, you are amazing. And  I’m a little curious, Kathy, do you have any religious background or spiritual background that you..

KATHY : This is so interesting. Um, when my husband and I got married, he’s  was Catholic. And, you know, this happened, you know, just a few years after we got married. So it’s almost like he didn’t know any other life with me except cancer. And think about it, he’s been living with it now, with me for decades and decades. And I think, you know, there were points in time and you could sense this when you’re reading the book where I, you know, I think he’s like fed up, like, oh my God, how many like, now another doctor’s visit or during my breast cancer journey, like it was supposed to be double mastectomy. And then I would move out and be done. But it went I had these terrible infections. It went on and on and on, and I could just see it in his eyes, like, how long are we going to do this? And so, that’s why I always say to everybody, um, just be aware that your caregivers are giving so much. We forget to say thank you. We forget to really like sometimes we almost take advantage. Like, he was always great about driving me to every doctor’s appointment. I could have driven myself like it would have been fine.

KATHY : Um. And he probably would have been happy going to work. But I was like, he offered. And I said, sure. And I think, I think over time, what happens is, if it happens for a long time, resentment builds and you really want to avoid that. When you’re a cancer patient and your caregiver is often the person you love the most, you don’t want resentment building. You want to be able to talk about it and handle things like that. So going back over to the religion, um, he really did, when we were in Chicago and I had first gotten diagnosed, we were very close with our Catholic Church out there, and he was super close with the priest, and the priest was this amazing, amazing man. And it was a small church that felt so community like. And so, they really got us through, like, um, you know, I ended up getting pregnant. I ended up having David and we ended up saying, okay, we’re going to move back east to be near Paul’s parents and my sister. And that whole story is in the book. But, you know, it was Mother’s Day and the the entire church, he had us come forward in the entire church, blessed us before we left.

KATHY : He was just, like everybody was there for you. And I can’t even describe it, like I write about it in the book. Like we went and lit the candles and just working him we haven’t found. Um, I hate to say this. We haven’t found anybody like him since that time, and it was a special time for us. And as a result, we ended up..this is terrible to say, but we came back to this area on the East coast, um, came to a church, and there was embezzlement going on. And we ran into some problems and we went off the rails. And I do wish we could find our way back. I do, um, because I think it helped us tremendously early on, and I think it would still be helpful today.  And I think everything is always about finding special people that you can relate to, whether it’s your friend, your doctor, a certain nurse, a priest, you know, a counselor, there’s just people along the way that you, I don’t know, you just work with, and you love them and they help you and you have to see that and catch on to it and make it work for you.

ALISON : I’m so impressed by your um you know, accessibility and your vulnerability in this. And yet you say you’re a private person.

KATHY : I know I think people are really shocked the ones knowing me um, that I put that much into it. But I felt like once I was going through the journals themselves, I didn’t expect to do it, but I could just see that I had made mistakes. And I feel like here I am, you know, 66 years old, and I and I’m just realizing this now, like, I laugh about it. And you can see toward the end of the book I’m writing, how many times did I Google cancer, myeloma, whatever it may be. And I never once googled relationships? How to have a good relationship. And so,  while I was writing the book, I was literally saying to myself, you know, Kathy, you are kind of a jerk, you know? And so I really did spend I’m a curious soul. So I kind of switched while I was writing the book and, and I would still go on my walks and nature and everything. But now I was listening to, you know, Gottman and Brene Brown and people that were more like in those areas. And I was learning so much and I thought, oh, this is how I’m supposed to be. Um, and I think it really did teach me a lot. And I felt like, I don’t want people to wait till they’re 66 to figure some of this out. I hope that if people get diagnosed earlier, or even if you’re a child caregiver to an elderly parent or whomever, that you have to realize, you have a voice and it’s up to you to speak up. And don’t let resentment feel like all these little lessons in there. I didn’t want people to learn them too late in life, like like I did. Um, I felt like I could have picked up on those much sooner.

JEAN : But, you know, Kathy, I don’t be hard on yourself. I think the universe chooses certain people to  deliver, communicate information, and clearly this spoke to your strengths. And at the same time, we’re all having experiences in our life. And bottom line is, we’re learning how to just love more. Yeah, love more unconditionally and for ourselves too.

KATHY : You definitely do that in the book.

JEAN : You hit this out of the park.

ALISON : You are really amazing and you’re just…

JEAN : So lovely

ALISON : lovely and normal and great. So Thank you so much for talking to us. I, I’m giving this book to my friend who’s now going through lung cancer and and you and you’ve given me so much hope. And thank you very, very much. You’re touching so many people.

KATHY : Thank you. And thank.

JEAN : You and your family are truly amazing and your Eight.

ALISON : That’s right… Love to all of them.

KATHY : Thank you thank you. It was really nice talking with both of you.

ALISON : Have a beautiful day.

JEAN : All the best okay.

ALISON : Bye.

JEAN : Wow.

JEAN : She is just, uh, so full of information and on both the intellectual side and the wisdom heart side.

ALISON : I, I was so, um, I thought from reading the book, like, she would seem so intense, and yet she’s so warm and lovely and open, and, you know, I just really enjoyed speaking with her.

JEAN : Me too. And I just want to read here three things that her, um, her takeaway at the end, she says, say thank you. Don’t ever take kindness for granted. Number two, speak up. Don’t ever let resentment build. And number three apologize. It’s never too late. So her journey has taught her some very deep soul wisdom that that we forget sometimes. But a cancer diagnosis, um, really has a way of transforming our perceptions to what’s very important in life.

ALISON : And that, you know, I’m always taken aback reading all these books and talking to all these people. Doesn’t it always come down to love ?

JEAN : It does.

ALISON : Like, you know, when you see, goodness, you’re actually seeing love.. Like, um, you know, love for yourself, advocating for yourself, love for your caregiver… You know, we talk to all these people… Lasagna Love, You Matter, Humankind…it’s all about love

JEAN : Yeah. It is. Um, so that’s great to know and to just check in with yourself, you know? Am I losing track of love and what’s truly important in life?  What’s your North star?

ALISON : What’s your North star? That’s great. I love that.

JEAN : I got that from Kathy, by the way.

ALISON : We can’t we don’t have an original thought, us, you and me.

JEAN : I think she says that when she’s sitting in Starbucks and she decides what’s really important in life, like, write it down and let that be your North Star.

ALISON : That’s great. That’s beautiful. Well, we hope that you enjoyed this as much as we did. It’s really it’s a wonderful book. Fatal to Rearless – 12 Steps to Beating Cancer in a Broken Medical System. I just loved it. Thank you so much, Kathy.

JEAN : Yes, Kathy, we send you our kindest thoughts.

ALISON : That’s right. Have a beautiful day.

JEAN : Bye.