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.
Most of the more than 232,000 cases of breast cancer that will be diagnosed in the United States this year are not due to a faulty gene passed down through families. As with most other cancers, they happen because of genetic mutations that happen as we age.
But about 15% of women with breast cancer have at least one relative who has also had the disease, and 5% to 10% have specific inherited mutations in one of two genes that have been linked to breast cancer, known as BRCA1 and BRCA2.
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.