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Living with Cancer

Preface

Returning home after a wonderful winter holiday, my wife took what she thought was persistent flu to our family doctor. "Karen," he told her, "I don't like those swollen lymph glands in your neck...I think you need to be checked for lymphoma."

When she told me, I presumed that "lymphoma" was worse than flu. I had no idea how much worse.

The Los Angeles basin in which we live houses the largest metropolitan area in the world, more than 1,000 square miles of sprawl. Within it are some of the nation's best-known cancer treatment centers. Though we were both frightened by her lymphoma, we figured that the medical establishment would put an orderly process in place for us, leading to treatment.

That's exactly what happened. One referral lead to another, which we followed without understanding - or question.

Our story begins in January 2000. A month later, a friend, who had lost his wife to cancer about a year earlier, asked us several pointed questions about Karen's diagnosis, the selection of her medical team, our general understanding of what was happening and why. I realize now that our answers revealed very, very poor support of the doctors who were trying to save Karen's life.

The following Monday, our widowed friend, L.J., piled me into his car for a visit to one of the treatment centers his wife had used. In the car, he began a gentle explanation of what a cancer patient should know and do to optimize the work of an oncology team. He talked about resources such as cancer nonprofits, government agencies, patient support groups, reference books, survivor hot lines, and internet sites that might help us. He explained that some medical components to success, such as second opinions and optional testing, were our responsibility as much as the medical team's. Perhaps most important, he helped me understand why I had to become an effective partner to my cancer patient wife and what was entailed.

By then we were pulling into the parking lot of the USC Norris Cancer Institute, where he had arranged for me to meet several key member of the staff. This was my first introduction to world-class oncology, its facilities, and its amazing scientist-physicians.

Years have passed. There have been surprising and very fortunate turns - beyond anything we could have predicted. It may interest you to know that, despite the outstanding credentials of thousands of local doctors, despite the presence of some of the world's most sophisticated cancer research facilities, the lead oncologist on Karen's team is 1,500 miles away. A department head at USC Norris suggested the referral, which put Karen into the hands of the world's leading authority on her particular of the disease. You may end up in a similar circumstance. This is a small part of a complex issue that you will learn more about as you read on.

My training as a reporter and researcher caused me to presume that I would find a book to help Karen and I deal with all the complexities of cancer. Two years later, I realized that despite mountains of literature, video, Web sites, there was no such collected guidance. As my lady's condition began to improve, it became clear that I needed to impart the lessons she and I had learned, from thousands of sources, to as many new cancer patients as possible. I needed to pay forward that quiet talk that L. J. had with me in his car, those years ago, and all the tutelage that followed.

Living with Cancer is not a medical book. It is about how normal everyday people like you and me live with cancer. It is a listing of tips and tactics that my wife and I have collected, offered to you from the point of view of those who've been down this trail ahead of both you and me, edited and reviewed by experts in the fields involved. It is about understanding your cancer. It's also about how to be the most successful patient possible, which is much different. Our home life, work, personal relationships, career, children, negotiations with health and life insurers, paying vast sums for things that you don't have vast sums for, possible physical handicaps, tax matters, legal assistance...all change, too.

Cancer will strike about 1.3 million other Americans, besides you, this year. That does not count the 1.1 million-plus cases of skin cancers that are generally considered non-threatening, though people die of them, too, on occasion. Close to 10 million others are now classified as "cancer survivors." An industry and huge pieces of governmental machinery have clanked into place to help you. The leaps in technology are breathtaking. Estimates of the annual expenditure in all areas of this enterprise run as high as $170 billion a year, and climbing.

Imagine that you are walking down a peaceful street, minding your own business. You come to a windowless building that's a thousand stories high, and goes on for as far down the block as you can see. Strangers run out of the bushes. Grab you. Push you through the door. Inside is frenetic chaos. The size, the noise, smells, confusion, bright lights, armies of scurrying people, are beyond imagining. The one thing you desperately need, and can't find , is a receptionist...

Hi there! Can I help you?

Sincerely,

Dave Visel

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