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.