Neila's Story

I continued to work in the Children's Department of the Richardson Public Library, but I am not the kind of person to be delivered to my fate withouth a struggle and we knew to the cancer was still there waiting so Kendall spent a lot of time searching, with Dr.Sharma's help, for a clinical trial I might qualify for. He found one at Northwest Memorial Hospital in Chicago that was testing interferon on patients wth with stable non-small cell ardenocarcinoma of the lung. Dr. Sharma talked to the trial administrator and it looked promising so we flew to Chicago May with a portfolio of images for testing and additional scans, and a couple of weeks later Dr.Sharma got word I had been accepted. It was exciting, I was to start immediately a cycle of six, monthly interferon injections. We quickly made arrangements to fly Chicago. Then, the day before we were to leave for the first injection Dr. Sharma received a call from the trial administrator: they had been reviewing the images and a detailed comparasion of those I had taken with me and those made there showed some small but unmistakeable changes in the tumor. These were "probably" not significant--they told us--but they were enough to knock us out of the program. In other words: don't come; you won't get the treatment.

Devastated seems almost too tame a word for what I felt: It wasn't just that I would not get the cutting-edge treatment the trial promised, the disqualification came because my cancer was not "stable" enough. The tumor in my lung was doing something, perhaps not growing, as Dr. Sharma assured me, but the episode made me feel like something dark and malignant and alive was still growing in my body. Which is, of course, exactly what was happening. I would break down and cry sometimes and I lived in terror, but life was going on and for the moment it was good. I tried to focus on that.

Winter ,1996

I continued to work in the Children's Department of the Richardson Public Library, and Kendall took a position that was much closer to home, while continuing to search for clinical trials--though we never found another one I qualified for. Monitering my cancer, monthly blood work and periodic images became a routine. The terror of knowing there is cancer inside your began, slowly, to subside as I passed all the routine monitoring. Claudia and Rony came up for the holidays, and I began making plans to visit Brazil in April, with stops in Cuiabá to see my family and in São Paulo to see Claudia and Rony in their new apartment.

It was not to be