Her treatment consisted of a lumpectomy, chemotherapy and radiation. She had terrible side effects from the chemotherapy and was too ill to leave her home.
But she wanted to go to a support group because she had read that women who do, live an average of five years longer, "It's terrifying to hear you have breast cancer" she said.
Two years after her diagnosis she lay in bed, sick from complications brought on by side effects from the chemotherapy. Although she had met others with breast cancer, she had never really talked to anyone who had the disease, and longed to do so.
She signed onto her laptop computer and typed in "breast cancer," looking for a chat room or online support group. Although she found lots of sites with meeting times, no one was ever there at the posted times.
She kept trying and at one point spent 53 hours online waiting for someone to show up in a chat room. During that time, she took breaks only to sleep and eat.
Finally, she decided to leave meassages on every online bulltein board she could find, asking people to meet her at a certain time.
Finally, on the last Sunday in 1995, three people met her online at the time and site she had designated. One was from Indiana, one was from Maryland and the other was from Pennsylvania. "It was terribly exciting." she said.
They talked about reactions other people had to their disease, talked about their cancer, told each other a little about themselves and shared some jokes.
Soon, the messages Frisius had posted began to draw others to the group and the site grew dramatically, as women with breast cancer shared information they could get in no other way. "It was an eye-opening experience to find that different parts of the country offered different treatments, options and choices. For example, in the South women had more mastectomies, while in this part of the country, women said they were getting lumpectomies," Frisius said.
She added that women found it really helpful to share information about side effects they were experiencing from treatment. At one point, Frisius was taking the drug tamoxifen. She began growing hundreds of lumps on her forearms.
"My doctor didn't know what they were from. I even had one biopsied," she said
When another woman in the support group said she had also gotten lumps and they were a side effect from tamoxifen, Frisius stopped taking the drugs.
The lumps disappeared.
She also was troubled by swelling in her right hand, which doctors had no explanation for. Through information from members of the support group, Frisius discovered that she had lymphedema, which had resulted from the removal of lymph nodes in her armpit. "When you have worldwide support, you can find out so much," she said. "Women talk candidily, share what they have experienced. Doctors can only tell you what they know from scientific evidence."
The chat room the group met at was originally part of the Lifetime television site. Frisius said that last summer ads were put on the site. Some rotated, others flashed and blinked or ran continuously through the chat, and a lot of members found the stimulus too diffiucult to cope with when they were sick.
Frisius didn't want people to leave the group, so she bought the site name and address last fall, found a chat room and reestablihed www.bcforum.org
Frisius' cancer was diagnosed after she discovered a lump in her breast. Her doctor told her the lump was nothing to worry about. But she insisted on having a mammogram and biopsy. "I sat in his office and wouldn't leave. I was really scared, I believed that people who wathc and wait, die."
Frisius says her experience is not unusual. The Website she established includes a "Faces of Breast Cancer Gallery." Several hundred women have their pictures posted on it, along with a short synopsis about their diagnosis and treatment, "About one third of them were told not to worry about their lump." Frisius said. "Women have to be assertive."
The Website has several hundred support group members and gets about 1,000 hits a month. The group appeals to peopole because they don't have to leave their living room, drive, get dressed or put a wig on if they are going through chemotherapy and have lost their hair." Frisius said. "There's so much bad publicity about chat rooms. But everyone in this has breast cancer or has a family member with it."
Some of the members have been in remission for years. "There is a great deal of value in helping someone else out. And you're never out of the shadow of this," Frisius said. "Every time you get an ache or pain, you have a nagging fear that the cancer is back."
The site is peer-motivated and driven. It includes articles written by members that range from how to make a millet prosthesis to cancer-fighting diets to how to use scarves to cover a bald head.
"The articles are contributed by people who have figured out how to cope with certain aspects of the disease," Frisius said. "It's not a medical site."
Members have also formed strong ties to one another. When a Georgia woman had a stroke, other members decided to make her a quilt. They sewed squares and sent them to another woman in Connecticut who put them togethere.
She and Frisius flew to Georgia and presented the surprise gift to her.
Recently, when a Nevada member who had helped many other people had her cancer return, the group decided they wanted to do something special for her. "She was our chemo expert," Frisius said. "She had been on chemo for four years, having treatments every three weeks. It was a way of life for her.
"People kept saying they wanted to make her a quilt. I know how to crochet, so I made one and people from all over sent ribbons to attach to it. Each ribbon had the person's online name on it as well as a quality - love, friendship, hope - and a written message."
An Illinois woman wanted to deliver it to her, so Frisius flew to the woman's home and they went to Nevada together.
Group emembers have also gathered in Denver in 1997, Geoirgia in 1998 and Oklahoma last year for a weekend. "You can get good information and support from this group. And if you move, you can still talk to others," Frisius said, "It's very rewarding."
We meet at 8 pm EST every evening for information, hugs and laughter!
To get there, click on the pink ribbons!!!!
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A listserv is an email group. To join a breast cancer or related listserv, click on the pink ribbon icon!!!!
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