I thought I had appendicitis. I had pain in the right side of my belly that didn’t want to go away. I went to my internist who examined me and immediately sent me for a CT scan … whatever that was, I did not know.
The diagnosis
In what seemed to be an interminably long time, she called me in and asked, “Do you want the good news or the bad news?”
“The good news.”
“You don’t have appendicitis.”
Wow! All right.
“Ready for the bad news?”
NO!
“You have stage 4 ovarian cancer. Your liver is two times its appropriate size, more like a small watermelon. Your right ovary is the size of a small grapefruit.”
I have now learned that ‘cancer talk’ is all about the size of fruit. I was too happily innocent about the cancer world and said two now-remarkable things … “Thank goodness … it is not appendicitis! What is stage 5?”
I was swept away to Stanford to meet the oncologist who would save my life. When I walked the long hike to the Comprehensive Cancer Center and saw those words on the wall, I couldn’t breathe. This was the moment that changed and defined the rest of my life.
My friends and family immediately soon arrived at my bedside. They came from all over the San Francisco Bay Area and Southern California. That was very nice.
True to the nature of a high-powered teaching hospital, every medical student, oncologist, and their fellows also arrived at my bedside to poke and probe. That was not so nice.
The oncologist
Around 8:30 that evening, a man walked into my lovely room filled with my loved ones and some shady characters sharpening their scalpels in one dark corner. He looked a little like Santa Claus. I asked a pretty crazy question but I had been poked and probed by a bunch of strangers all afternoon. “And who might you be?” and his response, “I am your doctor.” Whew!
Well, that was the introduction to the most incredible relationship in my world.
He dismissed the scalpel people immediately and said, “Nancy is too sick for surgery. We will start treatment immediately.” Pretty scary. The usual protocol for ovarian cancer is a huge de-bulking which is a hysterectomy times 10. I believe his decision to do chemo first and aggressively truly saved my life.
And then he said,
“Yours is a bleak diagnosis.
And you have a very challenging prognosis.
I think I can help you.
I AM WITH YOU.”
Everyone in the room heard those words. There was a communal sigh and big tears. Those words changed my life forever more.
And then he said something that still blows my mind …
“When your friends and family go home, and you think about today and feel overwhelmed, please call me … this is my home phone number.”
And guess what! I did call him at 2:30 am. He was as kind and caring in the middle of the night as he has always been throughout my cancer experience. He is honest, present, solid, available, and REAL. I wish everyone had the same trusting relationship with their oncologist as I was truly blessed to have.
He saved my life. He nourished my soul. He brought meaning to my cancer journey and to my existence. His commitment to my healing made me understand the healing process. In many ways, my healing was all about relationship. If he were that committed to my healing, so was I and I did whatever he said.
Learning to trust
I trusted him implicitly. I never ever felt alone. I began to finally understand what it means to trust. It allowed me to open my heart to the amazing generosity of strangers, the wonderful compassionate and sensitive nurses in the infusion room, to patients who rooted for one another, who cared, and to my friends and loved ones who walked the walk and held my hand and my heart. This was a transformation for me, an opening, and I was challenged and I met the challenges.
When my sister asked my oncologist about my love of ice cream, suggesting that I needed to change my wicked ways, he said, “I don’t think this is a time to deprive Nancy of any pleasures.”
It probably helped when he said, “If you are on an anti-depressant, double them. And if you are not on them, get on them. And find yourself a solid psychologist, preferably one who has experienced cancer. This will be a rocky road. You will need all the support in the world.” I followed his advice. If only every oncologist said that to his or her patient …
I did a ton of aggressive chemo sessions. I never did the debulking. And I had a gazillion scary issues and tough times. At the end of two years of treatments, I did a laparoscopy to remove my ovaries and tubes. I went dancing that night. AND I have never had a recurrence in 16 years!
The will to live
I was blessed to meet [CancerChoices advisor] Rachel Naomi Remen, MD, who became my mentor and my friend. We first met when I took a 3-day course for continuing education hours for psychologists. I thought I would perhaps be a better one if I ‘hung out’ with this rare, eloquent and elegant woman. During the first five seconds, I realized I was in her presence and in her course to define my relationship to my cancer. I took the same course with her 3 or maybe 4 times, whenever I felt the need to re-define my relationship to my disease.
During our conversations, she oftentimes spoke of the ‘will to live’ and I realized that was a very strong force in my healing process. Rachel speaks of being ‘open to the possibility’ in all things in life and I adopted that belief as one of my core healing strengths. I learned about courage and my job to ‘encourage my courage’, to own it, to live it. Cancer is trauma and, with overwhelming trauma, may come a ton of gratitude and perhaps a touch of enlightenment … a touch. Rachel saved my soul.
The stories
During my 21 long aggressive chemo sessions, whenever I had the opportunity, I invited fellow cancer patients to tell me their stories. They shared their helplessness and hopelessness. They suffered intense feelings of isolation, distrust, anger, and profound sadness. 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. One man told me he considered suicide because he was a ‘financial burden’ to his family. I was deeply shaken … not in this country. They were experiencing so much fear and anxiety about money.
I was determined to find the resources and make them accessible to the cancer community.
I made a vow to make a difference. I knew that financial assistance was out there somewhere. I was determined to find the resources and make them accessible to the cancer community.
My response
I created Nancy’s List, received my 501(c)(3) nonprofit status in 2006, and launched my first website. Nancy’s List was initially intended to be simply a “list” of financial resources for cancer patients and those who love and care for them. I hoped this would relieve some of the stress that is in the way of the healing process. My mission: No one will ever go through cancer alone.
The Financial Assistance project
The Financial Assistance project has evolved over time to become a very comprehensive resource. The categories:
- Specific populations (African Americans, Asian Americans, Children, Latinas and Latinos, LGBT, Native Americans, Teens and Young Adults)
- Camps for Kids, Teens, Young Adults and their Families
- Co-Pays, Health Insurance, and Other Medical Expenses
- General Expenses
- Legal Resources
- Lodging
- Medication Assistance
- Retreats for Adults
- Scholarships
- Transportation and Travel
- Types of Cancer
- Wish Fulfillment Organizations
And then, the vision morphed. I was speaking to every cancer organization in the San Francisco Bay Area about what was available to cancer patients and—more importantly—what was missing. I seem to always move toward filling the missing pieces.
A community call-to-action
At that very time, serendipity. Five woman who did not know each other made appointments for psychotherapy in one week. Each of the women who came to my office was in her 30s. In Marin County, there was an unexplained high level of breast and prostate cancer in the community. They all came with the exact same issue. They had a friend who also ate kale and did yoga who was diagnosed with cancer. They had always thought that were invulnerable and now they were scared.
I suggested that we initiate a Community Call-to-Action. We would give a big party. I would make a short speech something like “It takes a village and I want to build a magnificent one to deal with the epidemic of cancer in our community.” I placed clipboards around the room with such things as
I will walk your dog.
I will drive you to your medical treatment.
I will bring fresh food.
I will tutor your kids.
Everyone got it. It was magical. They all signed up and they all showed up. And we began an outstanding community response. Children in Montessori preschools made valentines for all the cancer kids in the nearby hospitals. Seniors and third and fourth graders teamed up to create get-well cards all year long. High school kids offered to ‘adopt’ a cancer family and would make healthy meals to present to their families on Friday nights. Rock stars did amazing concerts to raise money for families in need. It was beautiful. It continued and grew. It was magnificent.
Nancy’s Club
And then, as seems to happen with Nancy’s List, I had two new clients—a boy and a girl, both about age 12, who came to my office to talk. The young girl was adopted from Mexico at an early age. Her father had recently died from cancer. Her mother was going through her second round of breast cancer treatments. She asked me, “If my Mom dies too, will I be an orphan again? Will they send me back to Mexico?”
The boy with tears rolling down his face said, “My mom has cancer. My dad is ‘drinking like a fish.’ Can you help me tell him to stop? He won’t listen to me. I am so scared he will die too and then I will be all alone.” Heartbreaking …
I formed Nancy’s Club for children who were living with cancer and for those who loved someone with cancer. This was an adventure camp where the kids could just be kids for a few hours every weekend. So many kids and their families showed up to sail on the San Francisco Bay, to go to sporting events, musical concerts and theater performances, to go paddleboarding and play together on the beach. They had something wonderful to look forward to every weekend. It was magical. Most of the children had leukemia or brain cancer. They didn’t really talk about their cancer—they came to play AND they formed great friendships and their own support teams.
There were some moments I will never forget.
One young girl had sarcoma of her jaw. She was quiet and didn’t engage with the other children. She didn’t smile. One day on the big sailing boat, I asked her if she wanted to steer the boat. She needed a little coaxing but agreed. When she took the wheel, I was standing with her father. She smiled a radiant exciting smile. Her daddy cried. He said to me, “I always thought that she never smiled anymore because of the cancer. And maybe she hurt too much. Now I know it is because she is sad. She is so happy right now. Thank you.”
Another wonderful moment: We sailed the Bay and then stopped for a huge barbecue. We were ready to get back on the boat when I noticed that one little boy went back for big second helpings. I told everyone we would wait a little while. His daddy came to me, with tears rolling down his face. He told me that he had been so concerned because his son was no longer eating at home. “When I see my boy gobbling down food, I know he will live.”
All the kids went to Okizu Cancer Camp together and their families joined them for Family Camp. Every child is very very well. They are Shining Stars.
I/we had the most fun with Nancy’s Club, celebrating their courage and resilience and loving friendship. I was beyond delighted that I offered them the possibility of being a kid again without a label of being a “cancer kid” and they could frolic. It was a wonderful.
Move to Texas
AND THEN … I followed my bliss and moved to Austin to marry my cowboy (he is not really a cowboy and we don’t have horses—rather, he is a civil rights attorney—but the fantasy works for me). I could not practice psychology in Texas (there is no state reciprocity for licensure so I would need to do all the supervised hours and internships and exams). I envisioned how I could have a larger reach into the cancer community.
Nancy’s List
I was drawn to my initial intention … to develop a more comprehensive posting of financial resources for patients and their loved ones. In the last few months of the COVID pandemic, I committed to finding funds for cancer patients who are especially vulnerable in this stressful time. I created a list of the foundations, corporations and individuals who were assisting the cancer community.
At the same time, I wanted to educate cancer patients, those who love and care for them, and their medical teams about the availability of practitioners and modalities in their communities who could assist in deepening the healing process. I created a national listing of providers who offer integrative therapies to complement traditional cancer treatments. The list includes yoga, qigong and tai chi teachers, acupuncturists, massage therapists, chiropractors, health and wellness cancer coaches, psychotherapists and psycho-oncologists, cancer fitness programs, nutritionists, mindfulness and meditation teachers, spiritual guides, and more extraordinary generous people.
I often ‘ponder’ the meaning of Nancy’s List to the cancer community. I am very pleased with our projects—creating a support community for our neighbors in the San Francisco Bay Area, Nancy’s Club for fun and friendship and adventures for kids who were living with cancer, Nancy’s List of financial resources, and our nationwide directory of integrative therapists who deepen our healing processes.
Love Letters
One project always stands out as ‘a finest moment’… I Am With You: Love Letters to Cancer Patients. I wrote this book with 42 men and women who are living with cancer and with many persons who love and care for them. We especially wanted to speak to newly diagnosed patients.
Our wish is that this offering of hope and healing will sustain cancer patients through their first frightening nights and every night and day thereafter.
Our wish is that this offering of hope and healing will sustain cancer patients through their first frightening nights and every night and day thereafter. This is the spirit in which this anthology was written, by and for amazing cancer patients everywhere. The authors and I share the hope that we could put out our hands and hearts to soothe the pain and the fear and the true uncertainty. Some patients have told me they carry the book with them at all times, to bring courage. It is “like a warm heart and a hand to hold when I feel weepy.”
Many hospitals and healing centers give a copy of I Am With You: Love Letters to Cancer Patients to their patients when they are first diagnosed. Some offer them to their support groups. Nurses leave a copy by their bedside when they are hospitalized. Friends often give their loved ones a copy when they start the cancer journey.
I don’t know where my path will take me. I hope that I can respond to the needs of the cancer community and the beautiful people I have been honored to meet along the way.
I am the luckiest lady in the world … I know it. It is a joy to be Stanford’s poster child. I am extremely grateful.
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Nancy is a cancer survivor and the creator of Nancy’s List, the Financial Assistance Project, and Nancy’s Club, and co-author of I Am With You: Love Letters to Cancer Patients. Nancy is a colleague and friend of CancerChoices, and we are delighted to partner with her.
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