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I created Nancy's List in 2008 as my "love letter" to the universe, expressing my gratitude for my recovery from stage 4 ovarian cancer which had metastasized to my liver. I was diagnosed in April, 2004, and now, 8 years later, have been told that I am "cured" of ovarian cancer. Despite the bleak prognosis, and the on-going eulogies from my loved ones, I never doubted that I would survive and thrive. I truly enjoy defying medical statistics and being the "poster child" for Stanford's cancer center.
I was always blessed with a magnificent "A-team" who held my hand and my heart throughout the challenging journey. Yet, during my extensive and oftentimes grueling and very long treatment (21 chemos), I listened and listened to many of my fellow travelers. I can't help myself ... I am a clinical psychologist and intensely curious. I was deeply haunted by their feelings of loneliness and helplessness, their lack of information and resources. They were alone and worried ... about being present and honest with their children and not knowing what to say ... about telling their employers and likely losing their jobs ... about the potential of bankruptcy and foreclosure, the loss of insurance or inability to pay for all their medications. They suffered feelings of isolation, fear, distrust, anger, and profound sadness. A few demonstrated an abundance of courage and resilience, but many did not.
I always remember the very powerful words from my oncologist, "I am with you" during my own life-threatening process. Those words sustained me. "I am with you." So powerful whenever I felt disconnected and alone .... knowing I was not alone. Those words continue to direct my course.
I was inspired to find ways to ease the hardships and to enhance the quality of lives for my fellow travelers, my kindred spirits. I focused on the needs of the people who were diagnosed with cancer and those of the people who loved and cared for them. I committed myself to bring my background as a psychologist specializing in family systems, my skills and compassion and hope and good fortune to the simple profound wish and mission "No one will ever go through cancer alone."
I live in Marin County just north of the Golden Gate Bridge. We are well-known for having an extraordinary inexplicable cancer epidemic. I pursued everyone in the professional cancer community to find out what was being done for the cancer patients and their families, and what was the "missing piece" so that I could determine what contribution I could make.
I initially set out to create a "list" of financial resources which had been a "missing piece" for many patients and for myself. And then ... it began ... and continues every day. My research turned to defining cancer and the various diagnoses, with current articles and resources for specific diseases, and then differentiated by age groups, ethnicities, sexual preferences. I became interested in legal and employment rights, where to find medication assistance programs advocacy, alternative healing modalities, caregivers and their needs, hospice and end-of-life and grieving and mourning. When the "list" was launched on the website in February 2008, it received immediate recognition from the professional healing community, patients, their families, and the media. I was most encouraged by their response and, at the same time, I knew that a website was not particularly adequate. What was the "missing piece"?
I then set out to galvanize the community and what better way than to throw a party. I announced my intent to bring awareness to the needs of cancer patients, the implications and opportunities for our community, and the critical need to serve and support those persons and families who needed us. I said, "It takes a village to deal with the enormity of the needs of the cancer community, so I want to build one to do that." I placed clipboards around the party room asking for sign-ups ... to take their neighbors to treatment, to baby-sit their children, to walk the family dog, to prune the roses, to deliver healthy meals, and more. Community partnerships began and a new part of the website was born. I learned something very important ... people want to serve. They simply need to be asked. Some neighborhoods organized fund-raising events to help their neighbors. Businesses and healers donated their services. Some healers offered to partner with Nancy's List and we organized community forums addressing issues of importance ... nutrition, talking to our children, fitness, alternative healing choices, sex after cancer, and more. We formed a book club. Fitness programs developed throughout the Bay Area. We partnered with a number of sailors who took the patients and their families sailing each month. We went on nature hikes. Rock stars (old-timers, newcomers, and teens from the local high schools) gave fund-raising concerts. Teens gave a bake sale. One group of teens prepare and deliver meals for cancer families throughout the school year. Pre-schoolers team up with seniors at senior centers and make get-well cards for those in the hospital. Many schools created gift baskets for the children hospitalized on Valentine's Day. One community partner donated 75 teddy bears to the children at Christmas. One teen organized an all-county tennis tournament. I established partnerships with all the cancer treatment centers for children, teens, and adults in the Bay Area, who now refer their newly-diagnosed patients to Nancy's List for support services and resources. And we threw more parties since socialization makes such a difference.
During this period, I received phone calls and emails from many living around the world. Some wished to connect with a woman who had been diagnosed with ovarian stage 4 cancer. Many were concerned about their children and partners. Many needed an advocate to help them make critical choices about how to live their lives with more authenticity and hopefulness. More and more families came into my psychology practice. I became acutely aware of the "missing piece" in the cancer conversation. I was listening to children who spoke their truth ... Susie, a 12-year-old girl who had been adopted by California parents many years ago, had lost her father to cancer and was concerned that her mother was now battling cancer. "If she dies, will I be an orphan again and get sent back to Mexico?" Johnny, another 12-year-old, told me, "My mom is sick again with cancer and my dad is drinking like a fish. I am afraid they are both going to die. Help me to find a way to tell him to stop!"
Healing professionals in the cancer community have done a splendid job. They address nutrition, fitness and exercise, immune system deficiencies, and so much more. Yet, from my personal and professional experience, cancer patients are not encouraged by their healers to seek out psychological support. My patients want to and need to talk about living and dying, the dramatic and oftentimes painful changes in their relationships, the shifts in the whole family systems, the extraordinary losses they perceive and experience, the trauma. They don't want to burden their partners, children, or friends. And they feel so ultimately alone, which oftentimes undermines their healing process. I set out to inform the compassionate healers that sometimes "talking" really helps and to please consider that opportunity for their patients and the families.
Something else was "missing" and it became clear. People were changing their lifestyles. They were going to community lectures and retreats. They were eating better. But some still felt the profound loneliness and grief, even though they may have been getting better test results. I decided to launch what appeared to be so obvious .... to offer them special adventures and experiences "outside" of the medically-driven world with their families and loved ones just simply to have fun and share memorable experiences that, no matter what, would stay in their hearts and spirits forever more. I decided to enter this portal through the world of children ... those young ones who either had a diagnosis of cancer or loved someone who did. They were so vulnerable, yet so resilient, so courageous. Their stories were both heart-wrenching and heart-opening. And reaching out to the children and teens opened the opportunity to touch the entire family. Through this program, now called Nancy's Club, the children, their siblings, their parents, and friends make healing connections, find strength, community, courage, and they laugh a lot. This speaks to the essence of Nancy's List and Nancy's Club.
Sailing became the vehicle and the metaphor. "Today was the happiest day of my life," said 3-year-old Harry, the indomitable miracle leukemia survivor, who has spent most of his life in the hospital since he was diagnosed at 6 months. "A wonderful, uplifting experience for our whole family after 3 years of anguish and turmoil," said Katie, mom to Harry. "When I am sailing with my mom, I forget I even have cancer," spoke Gal, 9-year-old cancer survivor. "I love everyone when I am sailing," said Ivy, age 7, wonder woman, leukemia survivor. "When we are with Nancy's Club kids, life stops. The real things are highlighted. Gratefulness takes a front seat and human connection is the only thing that absolutely matters. I love Nancy's Club," said Suzanne, Ivy's mom.
We recently sailed with a group of teens in treatment from both cancer hospitals in the East Bay. The sister of a young girl with cancer told me, "Nora's sarcoma has frozen her jaw. She cannot swallow. She cannot chew. She has a feeding tube. She no longer can smile." Quite by intuition, I asked Nora to stand at the helm and steer the boat. Almost instantaneously, she smiled the most brilliant smile. Her loving family cried. Her father said to me, "I never supposed that Nora never smiled because she was so sad."
The mother of one of our most enthusiastic Club members, who has lost the use of her legs due to her leukemia treatment, told me, "The Club has saved her spirit and probably her life."
We are so desperate for a cure. We will do any treatment that holds promise. We will sit under lotus trees in Tanzania if that works.
I will always look for what works. It is different for each of us. It seems to me that there is much to be said for the healing power of being connected to the larger community, to have one's neighbors looking out for our well-being, to find those individuals who can generously listen to the fears and the sadness, to find pleasure and joy and laughter sharing memorable experiences with our loved ones. It just makes our lives a little sweeter.
Our Request for Your Support Our goal is sustainability and growth, correspondent with the high level of requests and expanding service population. We need to significantly increase the staff and program offerings. Your donation will help enhance our community presence, produce the events and outings and forums that are at the heart of Nancy's List and Nancy's Club, provide individual and family therapeutic counseling, and manage web resources. We have made a commitment to use the power of this organization to serve all who have been impacted by cancer and to honor the endorsement of the community. Our mission: No one will ever go through cancer alone.
With immense gratitude for your consideration ....
Nancy Novack Ph.D Nancy@NancysList.org www.NancysList.org 240 Almonte Boulevard Mill Valley, California 94941
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