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After three major breast surgeries in 15 months, Elizabeth Vivenzio learned a few things about how to take care of herself as she healed.

She learned, for example, that it was impossible to open child- proof medicine bottles as she recovered -- tightening her chest muscles to squeeze the top off was painful.

She learned to keep pre-moistened towelettes on hand for the days she was not permitted to take showers.

She learned to keep a pillow in the car to make wearing a seat belt more comfortable.

Nurses at the hospital had taught her how to care for her wounds, but they offered little of the down-to-earth advice she needed for the months after surgery, Vivenzio said.

So the Maywood (NJ) woman decided to compile her hard-won wisdom on a website for others as they faced mastectomy and breast surgery. "I learned so much about healing during my three breast surgeries, I now have a mission to share that healing knowledge," she said.

The result is EmbracingMastectomy.com, a site that goes beyond practical tips to express Vivenzio's attitude of joy and freedom, now that her worries of breast cancer have been eliminated. She had written patient-education materials for physicians for 30 years.

Topics range from "shaving underarms" to "dancing during recovery" and "walking in crowds." The site offers a "mastectomy self-care kit," that includes a travel-size pillow, healing ointment, natural deodorant and an electric razor, among other items. There are gift suggestions -- a post-surgery tank top and pajama shawl are two -- based on personal experience.

Many of the site's followers are carriers of a genetic mutation that makes breast cancer so likely that they choose to undergo preventive mastectomies. Others have already been diagnosed with cancer and choose the surgery to treat it.

"I have spoken to women from New Jersey to Hawaii," said Vivenzio, who is 59 and had a double mastectomy last year. Her breast reduction surgery a year earlier had found cells that could be a harbinger of cancer. To avoid the emotionally draining cycle of monitoring and repeat biopsies, Vivenzio opted to have both breasts surgically removed.

Her recovery led her to other medical professionals, including Kelli Anderson, an occupational therapist and certified lymphedema therapist in Westwood who helps patients as they work to regain mobility in their shoulders and upper body. She has worked as a hand therapist for 20 years.

Lack of movement after surgery can lead to stiffness or even a frozen shoulder, said Anderson, who experienced some of these side effects herself after a double mastectomy seven years ago. Some women whose lymph nodes have been removed develop painful swelling, known as lymphedema.

This fall, partly inspired by Vivenzio, Anderson launched a new business, a Breast Rehabilitation and Healing Center. Besides lymphedema prevention and treatment and occupational therapy, the center's services include nutrition counseling and massage therapy. For optimal recovery, she says, some range-of-motion exercises should be taught before a woman undergoes surgery.

Vivenzio also has worked with Valeri Parker, a nurse aesthetician and breast cancer survivor. When Parker developed lymphedema in her hand after surgery, a saleswoman at a medical supply store recommended she see Anderson for treatment before buying a compression glove.

Parker, now a consultant to Anderson's new center as well as a patient there, teaches women makeup techniques when chemotherapy causes them to lose their hair and eyebrows, and helps with the dry skin caused by some treatments.

"It is so frustrating, the lack of information out there," she said. "Women need to empower others."

Each of the three has also undergone breast-reconstruction surgery. Together, they are chronicling their different experiences with the reconstruction process on a new website that Vivenzio has launched.

It is quite common for women to stop short without completing their breast reconstruction, because they are so exhausted by earlier treatments, Vivenzio said. The site "celebrates moving forward and living life fully with reconstructed breasts."

The site is called TattoedNipples.com, with the subtitle, "Real women with fake boobs."

(c) 2010 Record, The; Bergen County, N.J.. Provided by ProQuest LLC. All rights Reserved.

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