Nancy’s List is my love letter to the universe, an expression of my profound gratitude for my miraculous recovery from stage 4 ovarian cancer … and my amazing life.
During my 21 long aggressive chemo sessions, whenever I had the opportunity, I invited fellow cancer patients to tell me their stories. They shared feelings of helplessness and hopelessness. They worried about wanting to be present and honest with their children, yet not knowing what to say to them. They suffered intense feelings of isolation, distrust, anger, and profound sadness. We talked about our fears amidst the uncertainties of living with cancer. These visits occurred in the infusion rooms at Stanford Comprehensive Cancer Care Hospital in California. That was 13 1/2 years ago.
They worried the very most about money … about the possibility of bankruptcy, the lack of funds to cover the enormous medical expenses and their medications. If they even had insurance, they worried that the policies were not sufficient. They worried about telling their employers and likely losing their jobs. They worried about not being able to pay for basic living expenses. They worried about their children’s futures.
It was unacceptable to me that anyone could be denied medical coverage if they did not have the funds. It was profoundly troubling that these kindred souls were experiencing so much fear and anxiety about the lack of funds for basic living. How would that reality affect the possibility of their recovery? Would they die? In this country? I had to do something. I made a vow to make a difference.
I too worried about money. Although I had a fancy PPO, it did not cover many of my expenses, specifically for drugs I needed to boost my white cell count. It would pay for these shots if I were to go to Stanford every 12 hours for an unknown number of days after my chemos to receive the injection. But it would not pay if I had an oncologist in a nearby hospital shoot me up. I opted for self-administering the shots since it was unlikely that I would have the energy to make the long treks to Stanford every 12 hours. I did not know the cost of the shots or the duration of my drug treatment. I just did it. When the bills started coming in, I freaked and desperately called the hospital’s financial office. The hospital did negotiate for future payments. Please pass that wisdom along to your patients and friends.
Where’s the Money to support these folks? I knew that financial assistance was out there somewhere. I was determined to make it accessible. I received my 501 ©(3) non-profit status in 2006 and launched my first website. Nancy’s List was intended to be simply a list of financial resources that could possibly relieve some of the stresses that were in the way of healing.
The research began. And I am an obsessive researcher. I contacted the Patient Advocate Foundation and told them my plight. They assured me that, had I contacted them while I was administering the medication, they would have helped me to find funding. However, I waited too long to make the call to PAF. Please, if this is your story, call the resources listed in the Financial Assistance section when you have the need. Don’t wait. The help is out there … we just need to make the call. Tell your family, your friends, your patients.
My guiding force, my profound wish, my passion … all the time … is
No one will ever go through cancer alone.
My vision expanded. When I was diagnosed in 2004, I was living in Mill Valley in Marin County, right across the Golden Gate Bridge from San Francisco. There was an especially high incidence of breast and prostate cancer in the area. Despite the major efforts to determine the cause and laughing over some very strange speculations (The women drink too much white wine), no one knew why. As an obvious consequence of this conundrum, families and friends were deeply affected … and in fear. I did my research and had many meetings with the care organizations in the County to see what was happening and what was needed to support those who were living with cancer.
Quite serendipitously, 5 or 6 women independently came to visit with me. Many of their friends had recently been diagnosed with breast cancer. These were strong, healthy women in their early 30s. They were yogis, vegans, and soccer moms. Many were quite angry and depressed … they had surmised that they were not vulnerable to cancer since they ate kale every day.
So I collected the group of very concerned women, cooked them very healthy meals (few with kale), and we brainstormed about what we could do for their friends and for themselves. They called themselves Nancy’s Angels.
I envisioned a Call-to-Action to develop a community partnership to meet the epidemic of cancer that we, as a community, were facing. We knew that we could not rely on the healthcare system to focus on the many emotional, psychosocial, and spiritual challenges that come with a cancer diagnosis. But we also knew that we could rely on our humanity. We could reach out and support the courage, bravery, and resilience of our neighbors.
We planned a big party. We were going to tell the San Francisco Bay Area what we were up to. We invited them to join our Call-to-Action.
At our first Love Fest, I said to the large number of guests, “It takes a village to deal with the enormity of the cancer crisis in our community. I want to build one to do that.” I placed clipboards around the party room in Sausalito asking for sign-ups — to drive their neighbors to treatments, to babysit their children, to walk the family dog, to prune the roses, to prepare and deliver healthy meals, and more.
Everyone got it!
Families adopted families on their blocks.
Teens gave rock concerts and tennis tournaments to raise money for families living with cancer. Students at one high school created a program to prepare wonderful meals for cancer patients and their families using my dear friend Rebecca Katz’ amazing cookbook The Cancer-Fighting Kitchen. They delivered the home-cooked meals on Friday evenings and spent a few hours with the families, creating long-standing friendships as well as support. The teens stayed with the same families for a year.
We started community forums on nutrition.
We set up exercise programs for cancer patients in many of the health clubs and spas.
We offered free massages, Pilates, yoga and energy classes.
Rock musicians gave awesome concerts to support the community of families living with cancer.
Local markets feasted the families.
The children were engaged.
Through a partnership with Dena Selix and L.I.T.A. (Love is the Answer), young school children joined men and women living in the senior centers in Marin to make get well cards for the children hospitalized during the holiday season. I was always amazed how many peace signs were on these wonderful cards … drawn by the kids? or, more likely, the grown-ups?
Every Valentine’s Day, Montessori School in Sausalito, founded and directed by Susan Lissberger, gifted the children who were hospitalized in the University of California San Francisco Children’s Hospital with beautiful hand-made valentines, stuffed animals, garlands for their rooms, and much more.
It was amazing.
Through our programs, cancer patients and their loved ones found community, strength, courage, pleasure, and healing relationships. There is healing power when one is connected to the larger community, especially when you are experiencing fear, loneliness, isolation, and uncertainty. It means everything to know your neighbors are looking out for you and to meet kindred souls along the path.
It does take a village to handle this crisis and we built a magnificent one. And it extended to many communities in the San Francisco Bay Area.
We want every man, woman, teenager, and child who has to walk the walk to hold the hand of someone who has been there, someone who understands the cancer mystery, and who will hang in there when times are tough.
Nancy’s List can be replicated in every community. I can help you do that.