A Member of the List

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Cancer came as a blow to me. I was only 44 years old, and had led a hectic life as a mother of two teens, a columnist for America Online, an editor of a newspaper, and computer consultant. After a week of inwardly raging against the diagnosis, and a period of depression, I turned to my computer for comfort. When the initial shock had subsided, I subscribed to an internet mailing list for help.

Therefore, I became an unwilling member of this club, with one purpose in mind -- to find medical information that I couldn’t find else where. The list, however, exceeded my expectations immensely. Not only did I uncover the data I needed, but I discovered hope, encouragement, laughter, and support.

Behind the cryptic listserv name of BREAST.CANCER@MORGAN.UCS.MUN.CA lay the warm and endearing personalities of almost 900 people, men and women. They come from all over the world -- from California to Scotland. Most I will never see, yet they share the same disease as me.

My Personal Project: Lymph Node Mapping
My quest began because I dreaded a clinical condition called lymphedema, one of the unhappy side-effects of breast cancer. When a person undergoes any type of surgery or radiation to their breast and arm pit area, they risk lymphedema, which causes hand and arm swelling.

Dr. D. scheduled me for a bilateral mastectomy (an operation that would remove both my breasts). Surprisingly, the thought of losing body parts did not trouble me as much as the possibility of my right arm and hand becoming immobilized. I am a computer consultant, and use these limbs constantly.

The whole scenario gave me a sick sense of déjà vu. I had recently finished temping in an office, to replace an employee whose career was ruined. She wore a surgical sleeve to treat her swollen arm and hand. And now, lymphedema loomed in my life and I became anxious. As I was only in the early stages of breast cancer, I felt I could still support my family. I wanted to work as much as I could.

A friend then told me of a new procedure called lymph mapping, and this knowledge alleviated my fears somewhat. With lymph node mapping, surgeons isolate a single nodule, and inject dye into it. Computers read the node and monitor it for spread of cancer. Unfortunately, my friend couldn't tell who was performing this procedure. So I subscribed to the mailing list, and made inquiries.

Boom! It was two days later. A gentleman on the list passed along the tip I wanted. Surgical teams at the John Wayne Cancer Center (in Santa Monica, California) were practicing lymph node mapping. One of the center’s nurses faxed me some information about the operation. I showed this fax to my surgeon and it turned out he had just done lymph node mapping on another patient. I became the second breast cancer patient at my hospital to undergo this operation.

United We Stand
Activism is alive and breathing on the breast cancer list. My buddies virtually howled when they learned that my Health Maintenance Organization had sent me home 18 hours after my surgery. They were shocked, because my surgical site had become infected. A medical professional wrote that there were increasing occurrences of infection in hospitals, due to outpatient mastectomies. Our group is pushing for oversight of this situation.

Healthscope With the help of an e-mail friend, I found the Healthscope site. I now have access to rating information on California Health Maintenance Organizations, to help me to find a better provider next time around.

Tears and Laughter
All is not doom and gloom on our mailing list. A star subscriber kept us in cyberstitches during the Halloween season.

She made a perfect Uncle Fester from the Adams Family, as chemotherapy had taken away her hair. Garbed in a robe and makeup (plus she popped a light bulb in her mouth), our "Uncle Fester" easily won a costume contest and walked away with two prizes.

Yet, on the other side of the spectrum, there are subscribers like Pansy. She had suffered so much, that fellow subscribers worried if they didn’t see her e-mail messages.

When we didn’t hear from Pansy, we called her husband and asked him to tell her how much we care.

At the first of the month, Robert emailed us and said Pansy had slipped away.

"Thank you so much for being there," he wrote. "You made our days easier."

Some people point to long-time breast cancer survivors as proof of a cure. Science, however, is still searching for the "magic bullet" to kill this killer, which ends the lives of over 40,000 Americans (men and women) every year.

Some breast cancer patients live until they are 80, and will then die from another cause. However, on our list, we have said goodbye to people who were only 33-years-old.

So I remain addicted to the list, and I am a willing member of the club. Like the others, I await that promised cure. In the meantime, I appreciate this virtual meeting place as one of the most comprehensive breast cancer support groups in the world.

Laura can be reached at HoHippie@aol.com