Years after husband’s illness, head of Cancer Information Service provides answers she once craved

Nancy Zbaren
Nancy Zbaren is director of the National Cancer Institute's Cancer Information Service, which is based at Fred Hutch. Photo by Robert Hood / Fred Hutch News Service

Phones ring all day at the National Cancer Institute’s Cancer Information Service at Fred Hutchinson Cancer Research Center. CIS provides free, bilingual answers to 500-plus daily questions – many asked by cancer patients or family members in crisis. In a typical month, CIS fields more than 10,000 calls, emails and live-help chat sessions.

Nancy Zbaren, director of the center, oversees a staff of 80 federally funded employees who handle those often-urgent queries. And, she has a unique perspective on how to deftly answer such challenging questions. For a time in her own life, she craved the same sorts of answers.

Outside my office, I hear a steady hum of hushed voices – crucial conversations carried out in tranquil tones, hard facts delivered with a velvet touch. I also hear the countless quiet pauses that punctuate the room.

I know those silent spaces well. In such moments, my staff is simply listening. In their headsets, they allow each caller to ask something – or many things – about their cancer diagnosis, or about the diagnoses of friends or loved ones.

I used to ask many of those same questions.

In 1987, my 34-year-old husband, Jan, was diagnosed with melanoma that had spread to his lymphatic system. We had been college sweethearts. He called me “Nanc-o.” I called him “Jan-o.”  I was an English teacher. He was in the insurance business. We had three young children. And we both dealt with that news in vastly different ways.

He underwent surgery to remove more than 40 lymph nodes. But the doctors could not find the original source of the melanoma. Based on that assessment, his oncologist told us Jan’s survival odds were 50-50. It might never return. Or, it might recur and, if so, there would be no conventional treatments to stop it. It was the coin flip of a lifetime. Then, the oncologist suggested: “Go home and live your life.”

Jan did precisely that. He saw it this way: “You’re either alive or you’re dead.” For Jan, there was no in between.  He would say: “On this day, I am alive.”

But me? I’m an information seeker. Gathering facts helps calm me. I ached to know much more about the possible medical road ahead. Jan didn’t need to peer past the immediate horizon. This taught me a crucial lesson: There is no right way, and no wrong way, to process such news and then haul it forward with you.

Family photos sitting on Zbaren's desk
When Nancy Zbaren's late husband, Jan, was undergoing a clinical trial at the National Institutes of Health in 1988, he kept these photos of their children by his bedside. Today Zbaren keeps the same frame on her desk at Fred Hutch. "The photos remind me that I survived and that they survived. We all survived," she said. Photo by Robert Hood / Fred Hutch News Service

The cancer came back. Four months after his surgery, Jan had a business trip scheduled to Hawaii. He didn’t feel well. His oncologist ran tests. With little time to gather more evidence before our departure, Jan only was told that something was “going on” in his liver. Then, we boarded a plane for the islands.

As he attended the conference early the first morning, I stayed behind at the Royal Hawaiian Hotel on Waikiki. The libraries weren’t yet open. There was no Internet. I sought out the hotel doctor to help me understand what we might be dealing with. Jan didn’t know I was conducting that research. But I did that in large part because we had three little kids. It was not just about me.

When subsequent tests confirmed the melanoma’s recurrence, Jan applied for and was accepted into clinical trials at the National Cancer Institute in Bethesda, Maryland. There would be three trials in all, three trips in 1988, from our home in Minnesota to the NCI.

There, we met and worked with Dr. Steven A. Rosenberg, now chief of surgery in the Head and Tumor Immunology Department at NCI’s Center for Cancer Research. A pioneer in the development of immunotherapies for patients with advanced cancers, I found Dr. Rosenberg to be brilliant. I’ve followed his career ever since. For example, his research into the adoptive transfer of genetically modified lymphocytes has led to the regression of metastatic cancer in patients with melanoma, sarcomas and lymphomas.

For Jan, sadly, the three clinical trials were not successful. In fact, we didn’t come home together from our third trip to Bethesda. He died there in July. Near him, sat a metallic, gold picture frame that displayed wallet-sized photos of our three children, Bret, Michael and Kara. At the time, they were 9, 7 and 3.

Soon after his death, I recall one of the head nurses asking me about my occupation. I told her I was a teacher.

“I don’t know what you’re going to do next but I’ve never heard anybody ask the questions you asked,” the nurse told me. “You may want to consider doing something where you help other patients ask those questions.”

Now a widow, I knew I had to find a new vocation that earned enough money to help raise our kids. And I knew I wanted someday to help other patients or families find the information they needed about cancer.

Eventually, I remarried and moved to Seattle.  I funneled my newfound passion into a job at a United Way agency called Cancer Lifeline. And through that, I met some people who worked at the Cancer Information Service.

Today, the CIS helps offer some of the same wisdom I gained during those final, precious months with Jan. That time showed me that people deal differently with a diagnosis. And here, our mission is to provide information so people can be their own advocates.

If I had called [the CIS] back in 1987, they would have done just what they do today – worked with my fears and anxieties and my wanting to know. And, they could also have talked to my husband.

We are just one step in people’s pathway. I tell my staff often: We didn’t cause this, and we’re not going to take it away. But what we can do is help move people down the path.

I’m so glad to be here. My original dream was to have been the English department chair at my school. I loved teaching. But I truly love this.

On my desk, there are the same three photos of my children that adorned Jan’s room in Bethesda. The frame always sits right here. I’m never without it. These were their faces and their ages at the time that he died. The photos remind me that I survived and that they survived, too. We all survived.

But I had a lot of help.

After Jan died, I saw a counselor. I asked him: “How do I not end up cynical or bitter?” He explained that if I could understand that sadness is different from unhappiness, I could go forward. He told me that I would be sad for the rest of my life about Jan, and I am. But he was right: You can be sad and happy together. I am happy.

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