In April 2002, when the doctor told us my wife, Chris, had breast cancer, the first two words out of my mouth were "Oh" and a four-letter word. I felt shock and disbelief -- that this kind of thing happens to other people, not to us. I had no idea how I would handle this -- do all the caregiving, plus make a living. Right away, my attitude was, "It's her job to get better, and it's my job to do everything else." But it still seemed impossible.
As it turned out, Chris had stage 3 breast cancer and had to have a mastectomy, chemotherapy, and radiation. She definitely wanted me to be involved, and I wanted to be there for her as much as possible. But we live up in the mountains and are pretty isolated. There are no support groups.
Each year in the United States, close to 250,000 women learn they have breast cancer. As they deal with their diagnosis, they are also asked to make daunting decisions about how to best fight their disease.
New patients facing treatment need to understand their options, and that means learning all they can about their cancer, says breast cancer surgeon Lee Gravatt Wilke, MD.
Wilke, who is an assistant professor of surgery at Duke University Health System and a board member of the NavigateCancer...
At the time I was a software developer -- I now like to say I'm a recovering software developer -- so I did what came naturally: I started doing research on the Internet. I found an oncologist whom we loved and what I considered the best cancer center in the West at UCLA.
And because I'm a naturally protective person, I threw myself into caring for Chris through what turned out to be four bouts of breast cancer, which included six surgeries, two rounds of chemotherapy, and three rounds of radiation. I changed dressings, dealt with her surgical drains, bathed her, fed her, gave her medicine, and drove her to and from UCLA, which was 100 miles each way. I did all this because I believed the short-term sacrifice was worth the long-term result: her survival.
After about five years I did develop burnout -- what some people call "compassion fatigue." I really needed to get out of the house, away from talking and thinking so much about cancer. All of that, combined with financial problems, was just too much.
Eventually I joined an online support group, which was very helpful. And I decided to write a book to help other caregivers deal with what can be an exhausting, stressful, isolating job. I've become a professional speaker and have developed several online tools, including thepatientpartnerproject.org , copinguniversity.com, and a free monthly newsletter, "Caring and Coping," to support patients and their caregivers, family, and friends.