Preface to the First Edition: Journeys in a Dark Wood
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xix Preface to the First Edition Journeys in a Dark Wood In November 1996, I was diagnosed with non-Hodgkin lymphoma, a form of cancer that affects the cells of the immune system. I had recently accepted a new position at a liberal arts college and moved from Boston to western Massachusetts. I’d been very busy settling into my new and challenging job and hadn’t yet developed a strong local network of friends. As a neurobiologist, I was familiar with research suggesting that a good social support system could be invaluable to cancer survivors (see Chapter 7). But there was little available in the way of support groups in my community, and weak and vulnerable to infection, I was reluctant to venture out unnecessarily during the harsh New England winter. My brother came to the rescue. Shortly after I was diagnosed with lymphoma , he discovered a computerized mailing list devoted to people with non-Hodgkin lymphoma (NHL; lymphoma is broadly subdivided into Hodgkin lymphoma and NHL: this book addresses both types of lymphoma). This is one of several online support groups available to people with lymphoma . There is also a Hodgkin lymphoma mailing list, several more specialized NHL mailing lists for people with different kinds of NHL, and a more general list for people with any of the blood-cell-derived cancers: leukemia , lymphoma, or multiple myeloma. For the next year, the NHL mailing list formed my online support group. The NHL mailing list, which was founded and managed by Scott Pallack, a Las Vegas cabdriver and computer expert who had been diagnosed with NHL several months before I was, put me in electronic correspondence with several hundred people who either had NHL or were taking care of someone who had lymphoma. During the year I was on the NHL mailing list, I U xx Preface to the First Edition was struck by how little most of us knew about this disease and also by how the same questions surfaced again and again as new people joined the list. The main purpose of this book is to provide answers to the questions that puzzled so many of us as we learned to cope with lymphoma. I wanted to provide detailed information about lymphoma: its symptoms, diagnosis, and treatment. I also wanted to give readers enough background in biology, and on how biology applies to lymphoma therapy, to be able to read and evaluate articles in the medical literature by themselves. I hope that this information will help readers to understand their own situations and options for treatment better and that it will also help them formulate questions to ask their physicians about their own specific treatment plan. A Note on Coping Strategies One of my major strategies in coping with the disease and its treatment was to maintain a sense of humor. I don’t think that I could have remained psychologically intact during the year after my diagnosis if I hadn’t tried to find a lighter side to things. The idea of laughing in the face of death is something that many people who have never faced a life-threatening diagnosis find inconceivable. Shortly after I completed therapy, my husband, Paul, and I went to an end-of-the-year party for junior faculty. This was the first social occasion I’d attended in quite a while, and seeing the “$30,000 haircut” chemotherapy had given me was the first indication many of my colleagues had that I’d been ill. Talking with my friends at the party, I was struck by how many of them felt that they needed to assume a sober and serious attitude around me. Over and over they asked the same question: “You seem so cheerful. How can you possibly be cheerful—and telling jokes about your situation—at a time like this?” I had no real answer to give them, except to say that it was the only way I could have survived. I’ve been aware that I had cancer every hour of every day of the eight years since my diagnosis. It’s not something you tend to forget. But living in a constant state of anxiety and fear would be intolerable . Developing a sense of humor about the disease is one way of tolerating a potentially intolerable situation. As the great physicist Niels Bohr is reported to have said, “There are some things so serious you have to laugh at them.” And I’ve found that, once...