We’ve all known people in our lives who have made lemonade out of lemons. That’s what Kathy Giusti did when she was diagnosed with multiple myeloma, a rare blood cancer. Kathy not only cured herself, but she created a whole lemonade factory that has helped hundreds of thousands of people who have been diagnosed with cancer.
I first met Kathy at a memorial service in Connecticut for David Bloom, an NBC reporter and anchor who had died of a pulmonary embolism while covering the war in Iraq. David was young, vibrant, a terrific correspondent with a beautiful family. It was hard to believe that his life had been cut tragically short when he was just thirty-nine.
When Kathy introduced herself, I had no idea that it would be the beginning of what would become a lifetime connection. She wanted to thank me for all the work I’d done to raise awareness for cancer. But the more we talked, and the more I heard her story, I quickly realized we had something else in common. Kathy knew what it felt like to be diagnosed with a terminal illness for which there was no cure.
I knew that feeling all too well, watching two people I loved go through the same thing. I lost my husband Jay to stage four colon cancer in 1998. He was forty-two. My sister Emily died of pancreatic cancer a few years later at fifty-four. Kathy had been told she had three years to live in 1996. She was thirty-seven. There was nothing she could do—there was no treatment, no drugs, not even experimental ones. In other words, the kind of punch-you-in-the-gut, this-can’t-be-happening life-shattering news that you can’t even wrap your brain around. But here she was, six years later, emanating vibrancy, determination, and very much alive. I wondered, who was this cancer-fighting superhero? And how did she do this?
First, Kathy had the tools in her toolkit to change the paradigm and potentially cure an uncurable cancer. As a rising business executive at a leading pharmaceutical company, she had an inside view into the healthcare system—how research was conducted, how drugs were developed, and how they ultimately found their way to patients. Then, as a patient, she had a front-row seat to that same healthcare system. Facing mountains of red tape, hours on hold, and the all-too-often repeated “I’d like to help you, but . . .” Kathy refused to take no for an answer. In the end, she not only saved her own life, but disrupted a deeply broken healthcare system in ways that would help millions of others facing a fatal diagnosis.
But while Kathy became a badass, ball-busting, cancer-fighting whiz, she never lost her humanity. She has helped countless people navigate their way from diagnosis to treatment, often serving as a one-woman clearinghouse of invaluable advice and life-saving information. Friend or colleague, celebrity or stranger, when a cancer patient called, Kathy always answered. One such patient was my friend Eliza’s father. Eliza was a member of our staff at KCM, the media company my husband and I started. When her father was diagnosed, Kathy got on the phone with Eliza’s dad right away, put together a team, connected him with a doctor at Dana Farber, made sure he was getting the tests he needed and got him the best care possible. For Eliza, who was only in her twenties and not prepared to be a caregiver, Kathy was a much-needed lifesaver. When another dear friend, Mimi, was diagnosed with a very tough myeloma, Kathy showed her the power of following the research. She helped her get her genome sequenced then moved her from one cutting-edge treatment to the next, from transplant to a precision medicine designed for her specific cancer, to a breakthrough CAR-T cell therapy which is keeping her cancer at bay.
Sadly, we can’t clone Kathy—but this book is the next best thing. A road map for every patient who hears those three words: you have cancer. When my husband and sister were diagnosed, I remember being in a complete mental fog, lost and afraid and not knowing where to turn for real, practical advice. How do you know how to get to the right doctors? What is the best treatment? Does my insurance cover it? Is there a clinical trial and should I be in it? After years of coaching patients, navigating medical centers, biomarker tests, genomic tests, immune tests, Kathy knows what to do. She has identified simple and actionable steps any patient can take to access the best care available. Given the extraordinary speed of today’s scientific advancements, that additional year, or two, or three, can get you a lifetime.
Kathy’s is a deeply personal story that has had a profound public impact. Now we can all be the beneficiaries of her experience and wisdom that comes from the most motivating of all conditions—the desire to live. When Time magazine asked me to write about Kathy for their list of 100 Most Influential People issue in 2011, it was a tremendous honor. I called her a hero then. She’s still a hero to me. And after reading this book, hearing her kind, compassionate voice girded with steely determination tell you her story, she will be your hero too—and a much-needed companion as you or someone you love faces a challenging diagnosis.
—Katie Couric