On Loss and Love in Multiple Myeloma: A Tribute to Three Myeloma Advocates
It has been a difficult time in the past few weeks. We have lost three incredible myeloma patient advocates who have helped their fellow myeloma patients in their own unique way. My heart hurts. I am honored to have known them all and have found it difficult in the past few days to find the right words to provide the right honor to their legacies because it is a mixture of gratitude, respect, appreciation, survivor guilt, sadness, hope, emptiness and love. It is an encapsulation of this very real life we are all living with multiple myeloma. It has been hard to process those conflicting emotions and sufficiently pay tribute to their lives and contributions.
As many of you know, myeloma advocate Cherie Rineker died on Wednesday of this week. I loved Cherie. We all loved Cherie because we knew her online through her book and her unique openness in sharing her struggles, her presence on Facebook, her open heart and her love of others.
Cherie was a pragmatist about her own disease (she would say it was part of her “Dutchness” ). She was diagnosed in 2012 at the age of 45 and was empowered and unafraid to do what it took to get her best outcomes. She was never scared to look into a clinical trial that could extend her life, or have open and educated conversations with her doctors. She didn’t hesitate to travel to get the best care, even though she had extreme bone pain that made traveling difficult. She was Angelina’s mom, and wanted to do everything in her power to live as long as possible so she could continue doing here favorite job as a mother. With a myeloma that was aggressive from the start, her efforts did matter in extending her life. She saw a specialist, Dr. Orlowski, who carefully put together all available treatment options that were the best options for her personally. She sought out a CAR T trial in Tennessee, which helped her live another year in remission – a critical time for her daughter. She paired that reality with a great deal of hope. She knew what she was dealing with, yet she was sunny and optimistic. She spent her time giving back to others, encouraging them on their myeloma journey.
Cherie was real, which is why we felt so close to her. She wasn’t afraid to share that she had days that she was depressed, days that she was scared about how this was affecting her daughter Angelina or her family relationships. She was open about how a cancer diagnosis affects you not just physically but emotionally and how it touches your sprit. She encouraged others to deal with emotional or relationship issues that may have lay dormant for years but that cancer gave her the bravery to address. This helped heal her heart and brought her a great deal of peace. She pondered about how myeloma helped her sift through the important and unimportant things of life and helped her prioritize on the most important things – her family and friendships. She knew when she had had enough of myeloma treatment and when it was time to stop. She knew when the risks of more therapy outweighed the side effects it brought.
Cherie had a life force that made you want to be around her. She had a glamorous smile that would light up a room. She loved life and was working on a new book to share her story with others. That future book will help to fund myeloma research with the Myeloma Crowd Research Initiative. She set about to do good, but mostly to spread love. Her most valuable lesson through her cancer experience (which became her mantra) was “It was always about love, anyway.”
I believe that Cherie will continue to watch over her family – her husband, son and daughter as an eternal presence of support. We hope she will walk with us as well, and pray that we learn the lessons of love she has so carefully taught. We miss you already Cherie.
Bob Regello passed away earlier this month, and was a fabulous example of lifting where you stand. Bob was diagnosed with myeloma in 2007 and was the Sacramento support group leader for the last 6 years with his wife Jeanne. I had the pleasure of meeting Bob and Jeanne when our family visited Sacramento as part of our HealthTree 50-city tour. He visited with each member, making sure they were doing ok and as he canvassed the room, you could feel the appreciation and love his members had for him.
One of his most rewarding moments is when a caregiver called and said his wife had multiple myeloma and that she would die soon. Her sister had told her not to get treated. Bob emphatically stated that she should get treatment, which she did and has enjoyed her family, trips to Europe and a good quality of life over the last 4 years. It's clear that Bob is well loved by his fellow myeloma warriors. Bob too had struggled over his 11 year battle with myeloma. He tried all of the approved therapies and had CAR T treatment late in his care. He too, was seen by a myeloma specialist, Dr. Jeffrey Wolf at UCSF and advocated that others see a myeloma specialist. He knew how important it was and how nuanced care could be with experts who knew how to apply the right drugs at the right time.
Bob grew up in Northern California and worked at several department stores. He retired in 2007 with over 29 years of dedicated service and Employee of the Year at Macy's. Bob's first priority was always his family. He was a loving husband, a devoted father, and one who cared for his extended family. A special joy was when he became a grandfather in 2014. Bob used a terminal diagnosis to help others. He was focused on serving those around him and helping myeloma patients live as long as possible through education. He will be greatly missed by his wife, family and support group members.
Bob Tufts was a Major League Baseball pitcher with the San Francisco Giants and Kansas City Royals. At 6'5", he towered over the other players, playing 27 major leagues games from 1981-1983 with a 2-0 career record. After an arm injury ended his baseball career, he turned to work on Wall Street, earning an MBA from Columbia University and working for over two decades in finance. Myeloma rocked his world in 2009 and he had to reinvent himself once again, this time as a business course teacher at Manhattanville College, New York University and most recently at Yeshiva University. I met Bob and his wife Suzanne at one of Pat's Myeloma Beach Parties, an educational meeting where Bob was invited to be a speaker. He and his wife were spirited advocates of the right care at the right time for each patient.
Bob was motivated to help others with myeloma, co-founding his own non-profit foundation called My Life is Worth It which focused on the cost of therapy and access to treatment for all patients. He rejected the idea of measuring the value of a life by QALY (quality adjusted life years) and wanted all patients to be able to receive treatment for their specific type of myeloma or other cancer, not care based on price or an insurer's assessment. He knew how unique we all are and how treatments have to be personalized by true experts in the field.
Bob sought out new treatments with the help of a myeloma expert and this care extended his life. It gave him the opportunity to teach over 1500 students in his later-stage career. We will miss Bob's spirit and enthusiasm to protect us as patients. To watch Bob's story, click here.
These three incredible individuals knew how to maximize their time and purpose in this mortal experience. They did whatever they could to advocate for themselves, employed the help of experts to get their best possible care and then turned around and served others. We are indebted to their service and pray we can return the favor by paying it forward.