Beating the odds on multiple myeloma for more than 25 years makes Kathy Giusti, of New Canaan, Connecticut, much more than a survivor. She is a warrior and a miracle woman, which means she knows how to fight back. So, when she was diagnosed with early-stage breast cancer in January, she knuckled down and put on her boxing gloves, determined to beat that one too. But as Kathy has learned over the past 25 years, this is a fight you can’t do alone.
While many people have helped her on her journey, Kathy has also helped countless more in their own battles against cancer, from coaching the newly diagnosed to literally writing the playbook on how to cure a disease. But among all the caregivers and care receivers in her life, one person stands out: her identical twin, Karen Andrews, of Greenwich, Connecticut.
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Kathy and Karen, 63, are each other’s secret weapon. Karen is not only Kathy’s genetic double but also her savior, having donated precious bone marrow in 2006 as a gift of life to her dying sister. And then, in a seesaw role reversal, when Karen developed breast cancer, it was Kathy who was there as an advocate, researcher and caregiver from the minute her sister got the diagnosis.
Sibling relationships can be extremely close, but twins often seem to exist on a different plane. Kathy and Karen are an incredible example of the sibling bond that cements when sisters become caregivers.
The first call after diagnosis
In 1996, Kathy’s pharmaceutical career was on a fast track, and so was her family. She and her husband, Paul, had a year-old daughter, Nicole, and were planning on having a second child. Then Kathy was diagnosed with multiple myeloma, a little-known blood cancer with no cure and few medications or treatments in the pipeline. Kathy was given three years to live. But the disease had found someone who would be its equal match. Kathy was a person who got things done, and she was motivated to live. Her career in the pharmaceutical industry meant she knew how to access information, talk to people in health care and direct much-needed attention toward this long-neglected form of cancer. She also had an able and willing partner: Karen.
“I was in Chicago and Karen was living in Connecticut,” Kathy recalls. “I called to tell her I had a fatal disease and they had given me three years to live. We were both panicked and crushed. I’d always functioned as ‘the older one,’ but in that moment we reversed roles and she kicked into gear.”
“I’m so blessed to have a twin and sometimes you take for granted that you have a built-in best friend,” says Karen. “I remember picking up the home phone, holding my son, and my world just stopped. It had never dawned on me at that age that I would get a call like that from my sister.”
Karen wanted to burst into tears, but she knew that’s not what Kathy needed from her. “She’d gotten the diagnosis and talked to the doctor enough to know how bad it was, and that there was nothing happening in terms of research in this disease,” Karen recalls. “She was looking for me to stand up, and I knew the best way I could help was to spring into action.”
Two sisters, one mission
Karen’s legal background combined with Kathy’s medical industry knowledge made them the perfect duo to begin researching, learning and creating an information exchange. Lacking today’s internet search engines, they headed off to the library and began faxing information to one another.
In 1998 they decided to formalize their work and create the Multiple Myeloma Research Foundation. “We each used our own skill sets and we didn’t know what we were doing, but we had so many people who volunteered to help,” Karen says.
The foundation and Kathy would go on to help launch 15 new drugs, triple the life expectancy of patients diagnosed with multiple myeloma and transform the way research is done across all cancers. What began as two sisters sitting in a living room trying to keep one of them alive became a force that would not only save Kathy’s life but also change cancer care for millions.
Karen’s mission of not letting Kathy die didn’t end with the start of the foundation. In 2006, 10 years after being given only three years to live, Kathy was still fighting her myeloma and elected to get the stem cell transplant that would lead to her remission. As a twin, Karen was the perfect bone marrow match for her sister. “It takes a special person to be the one someone calls,” Kathy says. “And Karen is my special person.”
“My sister, Kathy, is a complete warrior when it comes to medical issues,” Karen says. “But weeks after the transplant, she was at the end of her tank. Sitting with her after the transplant, I realized that the hardest part is when you’re coming out of it, after all of the procedures are done. When you are in the midst of it all, everyone surrounds you, and then they need to get back at work.”