Stories
Stories
Combat-Tested Cancer Coaching
Hi, this is Dan Morrell, host of Skydeck. When Kathy Giusti (MBA 1985) was diagnosed with multiple myeloma in 1996, she was overwhelmed. It was the pre-Internet era, with limited available information, but her immediate research at a nearby Borders bookstore revealed a three-year life expectancy with no available treatment options. And trying to navigate the complexities of the American health care system—bouncing from pathologist to a medical oncologist to hematologist oncologist—was daunting.
But in the midst of the chaos, she also recognized that she needed her then-18-month-old daughter to remember her when she was gone. She wanted her daughter to grow up feeling like she knew her. So she picked up a journal and started writing. The process helped her not only ensure a lasting connection to her family but also helped her reflect and focus on what really mattered.
That journaling lasted 26 years, tracking Giusti’s successful battle with multiple myeloma. Those entries and Giusti’s reflections on them are at the heart of her new book, Fatal to Fearless: 12 Steps to Beating Cancer in a Broken Medical System, which features her battle-tested advice for the newly diagnosed and their caretakers. In this episode of Skydeck, Kathy and I talk about how she learned those lessons, the mission and work of the Multiple Myeloma Research Foundation that she launched, how she approached her second battle with cancer, and the critical value of a North Star in any cancer journey.
Photo by Brian Stanton
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Dan Morrell: So many of these pieces of practical advice that you give about getting the right team in place, making sure you have an action plan, rethinking what really matters. It seems so useful, not just as 12 strategies, but it also feels like it might help somebody, in the wake of a cancer diagnosis, who might feel helpless.
Kathy Giusti: Absolutely. I think the way I wrote the book was I had coached thousands, honestly, thousands, of patients through their cancer over the years and every time they'd hang up and they'd say, "Oh my gosh, Kathy, 15 minutes with you just saved me five months of time trying to understand how to deal with this disease. And it gave me more hope. and more knowledge and understanding." And so that's where the 12 steps came from. But while I was writing the book, in order to remember all the way back to my first diagnosis, I had to go back and read 26 journals, one for every year that I didn't expect to live. And honestly, when I picked them up and they're all stacked on my desk, I thought, I'm going to read these, cover to cover, and I'm going to be at the end saying, "Look at me. I was amazing. I did it all perfectly. No regrets." And it was not the case. I read those journals and I could constantly read between the lines and see things I was missing, things I wasn't picking up on that were probably bothering my kids, not realizing how much it meant to my husband to have to sell his company so we could move east and get better care for me.
And so I'm reading all of this and I'm thinking, I cannot believe the toll that cancer and illness takes on the patient, but also on everybody around them. And it really made me think so much differently about the relationships and how important they are. And it's funny. I said to somebody that for all the years and decades that I was constantly doing research in oncology and this cancer and that target and this drug and that drug, I never once looked up a relationship, how to be a better person, how to be kinder, more patient.
I never did any of that until I started writing the book.
DM: Yeah, it was so interesting to see how much you drew from the journal to write this book, and you talked a little bit right there about what you learned about the process and how you reflected on that. But I wonder if there was any surprises as you went through that—not about the process or what you learned about the externalities of it, but maybe what you learned about yourself.
KG: What I learned was the challenge of trying to save my life and then save the patients’ lives around me in balance with living my life. I was so focused on, oh my gosh, are we going to get the next drug out? Will I have a drug in time to help me? And will my stem cell transplant be effective? And even after I did the stem cell transplant with my twin sister and I ended up in remission, multiple myeloma is still fatal today. It wasn't like I just said I think I'll just rest on my laurels and see what happens now. I was equally as tenacious about finding the next immunotherapy drug that might come out. And so I think that balance was out of whack. I was so focused on that urgency.
On the other side. I felt like I was doing a good job of being present and trying not to be on the phone for every sports activity and event that my kids were doing. But I know I was distracted. I know I was. And I think if we all had to do it over again, I'd be putting a lot more time into that and relying on other people to help move toward the cure.
DM: The subtitle of your book talks about a broken medical system, and I wonder if you can tell me when you first started seeing those cracks and what they looked like.
KG: I saw them right away. I couldn't believe that I'd be sitting with a doctor. And then I would say to them, I think I'm going to go out to Seattle and learn a little bit more about what they're doing in stem cell and bone marrow transplantation. And. Somebody would say to me, okay if you're seeing David Maloney, will you make sure you take notes on what he's doing and come back and tell me? And I'm thinking, this is crazy. The patient's being sent out to keep the doctors in touch with each other. That sounds nuts to me. So I immediately saw it.
I knew it from having worked in the pharmaceutical industry, that the healthcare system is a challenge, but it's really a challenge in oncology where it's so complex. When I say it's broken, I often say that it's large and it's fragmented. Like I said, you have to keep track of the doctors, but then you've got your insurance company, the laboratory, the infusion rooms, like you're the one integrating everybody in one system. And I think that takes a huge toll on the patient. The second part is it's moving fast, and it's moving faster than it ever has before. So this year alone, FDA approved 45 oncology drugs. Now, how are we supposed to know what's going on in our own specific cancers? And on average, our doctors Give us 16 minutes. Not because they don't care about us.
It's just the way the system is. They have to see X number of patients a day. So the patient feels completely burdened by the system. And then, of course, they're fearful that they're not making the right decisions because they don't have the right information.
DM: You just outlined two big issues that you found. How can we address those?
KG: So the short-term answer is navigation. So at the MMRF, for example, we have full-time nurse navigators that have come from leading academic centers. And these navigators will absolutely help walk our patients through the process. And needless to say, they're thrilled this book is out there so that they can use the book and also recommend the 12 steps to patients.
So the more the organizations in the hospitals can hire navigators to walk people through this journey and help them, I think the better off we're going to be. The more the navigators look like the patient, so they might speak Spanish, they might be African American, I think the luckier we're going to be.
But that's the short-term solution. The longer-term solution is, number one, prevention and screening, like making sure we focus there. Forty-two percent of cancers could be more avoidable if we didn't have obesity, if we weren't drinking too much alcohol, weren't in the sun, weren't smoking. So that's another huge place to go.
And I think over time, we're going to have to understand how we can make sure. patient outcomes are driving the whole system.
DM: You just mentioned a way that the MMRF has reacted to some of the challenges you've seen. How else have these challenges played a role in the evolution of the MMRF?
KG: For the nonprofit, research-based organizations, the key thing they absolutely have to do is be there for the patient. Here you are at Harvard Business School, right? We're fully trained to say, look at the environment around you.
First of all, just map it out. What is the landscape that you're seeing? And for the nonprofit sector, you have to say, what is everybody already doing that you don't have to do? But what can it be that you're doing that will change behavior? And usually it is a collaborative process. So for example, in myeloma, we had to start by attracting scientists to the field at the MMRF.
If we had to do grant funding and get them in, but then we didn't understand the biology of the disease. So we had to develop a tissue bank so that our scientists would have the tissue to play with. Then we started developing new drugs and new trials coming into the MMR. So now fast forward. Here we are, we have 15 drugs approved in multiple myeloma, thanks to, we have 15 drugs approved in multiple myeloma, thanks to the MMRF and the entire team system around myeloma, and now we have immunotherapy, which could potentially be curative.
So the MMRF has to sit and evaluate, okay, what role are they going to play in this process? And again, it's going to be educating the patients on these new drugs that could be curative and how should they best be used.
DM: Yeah, talk about how the landscape has changed for a patient now who's diagnosed with multiple myeloma because of the work at the MMRF.
KG: It's changed dramatically because before Imagine I'm sitting there thinking I have three years to live, no ifs, ands, or buts. There's no drugs in the pipeline, zero hope. Now patients are thinking, oh my gosh, there's 15 drugs approved. On average, myeloma patients are now living over a decade. And the science is moving so fast, there's incredible promise.
But if you're hearing about CAR T therapy, or bispecifics, or ADCs—the whole new immunotherapy space—and you're a myeloma patient, you're wondering, Do I move that up front? Do I start taking those drugs earlier? Do I even bother getting a stem cell transplant? And then you're also hearing there's a lot of side effects to these drugs.
There's infections, neurotoxicity. Do I want to wait until they're safer? So those are all the things the MMRF has to work on is making the drugs safer, making them. Better tolerated, so you have better quality of life. And then understanding the sequencing by which patients are getting new drugs and myeloma.
DM: Kathy, you've spent so much of your life and career fighting to save yourself and fighting to save others. And then in 2022, you were diagnosed with breast cancer. Can you talk a little bit about that diagnosis and perhaps how your reaction was different?
KG: Being diagnosed with multiple myeloma was one thing because again, it was so fatal. The interesting part about breast cancer was I had known that I was high risk for breast cancer, first because my identical twin sister had stage 3 breast cancer, but even more importantly because I had radiation to my ribs as part of my myeloma treatment, and that is a risk factor for breast cancer.
So I was being screened really carefully. I was getting mammograms, and then I would follow that with MRI. And so by the time they started seeing something off the MRI, I was not shocked, and In some strange way, I was almost relieved because we found it so early that I knew I would have a number of options.
Even though it was early, I went in and decided to do a double mastectomy. But again, everybody's different. I did that because if I did, I wouldn't have to do chemotherapy and radiation. I wouldn't have to be on treatments down the road. And I had watched what the aromatase inhibitors had done to my sister and neuropathy and all her challenges.
And so I knew that was the right decision for me.
DM: But it was interesting, your screening came as a result of a conversation that you had that sort of, raised your awareness in a way that you found surprising given that you swam so much in these circles.
Can you talk about that and what kind of mindset you need to have around this stuff?
KG: It's one of the things I love about the book. The book is supposed to be, "I'll give you the 12 steps, but I'm also your companion so that you don't feel alone out there as a cancer survivor." But it's also to tell you. I live in this space and I still made mistakes.
So you should never feel badly. You're making the best decision with the information you have at that time. And you're absolutely right. It was one of the scientists and clinicians in myeloma who met me randomly at a meeting that said, I hope you're seeing a breast cancer surgeon. And I was like, why? And he's because you're at high risk.
And I thought to myself, Duh, how do I not know that? But things like that happen to me, I ended up paying a lot of money out of pocket because I ended up with my breast surgery with an out-of-network clinician. And I write this in the book all the time, check your insurance, do it right, but even I make mistakes.
DM: I want to come back to, this idea that you come to, about keeping your North Star front and center on your journey. And you write this, you say "you need to come back to it every day. It's the one gift that a cancer diagnosis may give you." Can you expand on that a little bit?
KG: Yes, there's not many times in your life that somebody's going to look at you or you're going to read something in your portal and realize that your life is in jeopardy. And it's the moment to sit down and say, Oh my gosh, what am I sad about? What am I scared about? What's keeping me awake at night? What's wrong? For some people, it could be anything from, I don't feel like I have a legacy. I don't feel like I have purpose in my life. Or, obviously for me it was, I really want to build our family and I want to take really good care of this family. And so everybody's going to have different things. And it's okay. But you have to write it down. The problem I had was I got so invested because here we were making so much progress in myeloma and progress begets progress, like it's working. And I'm thinking, we're going to cure this disease. And so I almost became this woman on a mission, and I lost the North Star.
And it was really clear to me reading the journals I was way too focused because I knew we were going to get there. And I think I wish I had taken my foot off the pedal a bit, a few years before I did.
DM: Writing is hard. And what you had to do here especially, reflect on some very painful times, go through these, and relive them, and then recount them, can be a painful process. But you did this. You did all this work. Why did you feel the need to do this? Why did you have to write this book?
KG: I wrote it because of the way everybody reacted when they got that one-on-one time with me. Every time I would do the call, I, I was shocked at the just the joy and relief I would hear in their voice. And it made me feel really good. I'm helping so many people, but that is not a sustainable model. Doing one-on-one phone calls with people is not sustainable. So I realized along the way that the questions I was asking people and the way I was coaching them, it was very standard, and I thought, I can just write this down and make it work and give it to the rest of the world.
And by the way, you don't have to buy the book to get the 12 Steps. It's on my website. I give the 12 Steps to everybody, but I think the book is a lovely companion that makes you cry, laugh, all the things you want to do when you're reading a book. And I just found there was nothing out there when I had multiple myeloma.
And when I got diagnosed with breast cancer, I still couldn't find anything that was informative and helpful. So that was the whole point of the book. Just make sure every patient has access to it and at least has, at a minimum, has access to the 12 steps. And I hope, in all honesty, I really hope it helps the doctors because they're overwhelmed and the nurses.
They're overwhelmed, too. These are really good people that are struggling with the system as well, and I think they want to have a place to send patients to get better information.
Skydeck is the Harvard Business School alumni podcast featuring interviews and insights from across the world of business. It’s produced by the External Relations Department at HBS. Our audio engineer is Craig McDonald.
It is available on Apple, Spotify, and wherever you get your favorite podcasts. And If you could take a moment to rate and review us, we’d be grateful.
For more information, or to find archived episodes, visit alumni-dot-hbs-dot-edu-slash-skydeck.
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