Twin Sister Caregivers Team Up to Fight Cancer and Help Millions Along the Way
(AARP) – 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.
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.”
“The kids are at school, the house is quiet, and being alone is the most terrifying thing in the world,” says Kathy. “Isolation or even depression can happen, and confidants are key.” Karen was always Kathy’s first call when she didn’t know what to do, or needed to hear someone say, “This sucks,” instead of sugarcoating it. “Going through life together as a twin is an incredible bond. She is my sounding board about everything.”
When the ultimate caregiver needs a caregiver
Kathy’s cancer battle made Karen much more aware of her own health at an early age. During a routine breast scan in December 2021, the doctor picked something up. And when the results came back positive for cancer, it was Kathy’s turn to be the caregiver for Karen.
Kathy’s cancer expertise was in high demand at this point. She worked with the National Institutes of Health, the National Cancer Institute and multiple White House administrations on approaches to curing cancer, as well as answering the calls of hundreds of patients and their loved ones facing a diagnosis, whether rock star, global celebrity, general or a mom on her son’s baseball team. But when Karen called, she came first.
Kathy now became the researcher, investigating clinical trials and paving the way for doctor’s appointments and more. She became Karen’s sounding board and emotional sister support, just as Karen had done for her when her own diagnosis came out of the blue.
Now, recovering after her own surgery, Karen had to watch as the rest of the world moved on. “Every time I turned around it felt like there was worse news,” she says. “But Kathy had shown me how to go into warrior mode. She was always there, driving me to appointments, tending to an infection. When I needed something done, she just did it.”
There was a moment in Karen’s treatment that crystalized what it meant for her to have a sister as her caregiver. It was her last day of radiation, and she was also starting a job where her employer had no idea she’d had cancer. “I was terrified, and I had on a wig as I walked outside of the hospital after treatment,” Karen remembers. “Kathy was standing there with a dozen pink roses, and she just knew. I hadn’t really told anyone it was my last treatment. I was rushing around, focused on this new job and the fact that I now was a single mom who needed this paycheck and health insurance. Kathy had written down that it was my last day. I keep the photo of that moment on my desk. She’s always been there for me.”
The roles reverse again
Cancer wasn’t done with Kathy. In January, she received an early-stage breast cancer diagnosis during a routine scan. And as the seesaw tilted once more, now it was Karen’s turn to be back on the front lines with her twin.
“With cancer you are always looking around corners,” Karen says. “You’re constantly monitoring yourself and living from test result to test result.”
Because her breast cancer was found early, Kathy had multiple options for treatment and spoke with several people to determine which option was best for her. In the end, the person who knew her best helped her decide. Karen intimately understood what Kathy had gone through in her battle with multiple myeloma, and Kathy was equally aware of the debilitating toll ongoing breast cancer treatment had on her sister. Together they understood that the best path for Kathy would be to avoid years more treatment if possible, which led Kathy to choose a double mastectomy. Her recovery has been bumpy, with infection and multiple surgeries, but with Karen — knowing when to be there, telling it like it is, reminding her of the bigger picture — Kathy knows she made the right decision.
Kathy describes a moment, not long ago, when both sisters were talking about their recoveries after breast surgery. “Two days after an unexpected surgery, I Zoomed with Karen to show her the scar,” she laughs. “And Karen’s response was, ‘What the f—?’ Who else could you do that with?”
“We both understand what it means to think you are going to die,” Karen says. “Sometimes we want to talk about it, and other times we just want to put it aside and go shopping and laugh. We’re both living this life on equal footing, and neither one of us is safe anymore. We appreciate one another in so many ways. It’s not me helping her or her helping me, it’s us helping each other.”
Lean on Me
Kathy and Karen’s tips on being an exceptional caregiver:
1. Patients can’t do it alone and yet are often too proud to ask for help. Make it easy on them and offer.
2. Be specific. For example, if you can only help on certain days, offer those days. If you have flexibility, let them know you’re a person they can call when something comes up unexpectedly (and it does).
3. The areas of much-needed support fall into specific categories.
• Research the disease/diagnosis: If you are good on Google and at curating critical information, raise your hand. Select only a few key pieces that will help advise the patient and ask them what was helpful. You may become a valuable sounding board.
• Join doctor’s appointments and treatment appointments: Caregivers can listen to the doctor’s comments and help the patient make sense of them. Nothing beats a friend or family member to keep a person company during chemotherapy treatments, and get tea and a blanket. Offer to drive, which is one less thing for the patient.
• Provide emotional support: Be the honest caregiver that listens and doesn’t judge or try to fix it. Only offer solutions if the patient is asking. Try humor — it often works well.
• Offer family help: You may be the caregiver that helps take care of the patient’s family members, young children or elderly parents.
4. Patients need day-to-day help in a variety of ways. Only offer what you feel is helpful and works for you too.
• Communications: You can update the “outside world” on patient progress. Consider a group email, Facebook or CaringBridge.
• Insurance and approvals: The paperwork is challenging, as is pushing for important diagnostics and cutting-edge treatments. There may be issues with financial hardship that the patient needs to discuss.
• Running errands: Designate a go-to person to do grocery shopping runs and laundry and to pick up medications.
• Finding support: Help the patient identify areas where they might need help (child care, counseling, loans). Support them by tracking down the right contacts.
5. If you start feeling worn down yourself, let the patient know by gently sharing your boundaries. Offer up a solution, such as an additional person to take on tasks.
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