|
Sisters Network Provides Support
For African-American Breast Cancer Survivors
by Brenda Aghahowa
"I was `out to lunch'… I wasn't making any decisions," says
Karen E. Jackson, describing the shock and denial that set in when she learned
of her breast cancer in 1993.
"I didn't know the first thing about breast cancer," says Jackson,
founder and national president of Houston-based Sisters Network, a support
group for African-American breast cancer survivors. Jackson, who was living in
Los Angeles at the time, began reading up on the subject and attending
conferences sponsored by the major breast cancer organizations.
She underwent a lumpectomy, having a tumor and surrounding tissue
removed from her right breast. Afterward, she underwent chemotherapy and
radiation.
Her husband son and daughter were extremely supportive, and the
breast cancer groups, which were predominantly white, helped. Still, she felt
something was missing.
Birth of Sisters Network
"At the time, there were no national groups specifically for
African-Americans, and very few local groups," Jackson notes."Some of our needs
are not being met in the traditional groups. For example, we need a slightly
different educational focus."
During her own struggle with the disease, she also began to think
deeply about the plight of other women in less fortunate circumstances than her
own.
"What about all the women who are single, who can't read or have
no insurance? I had a rough enough time with all the advantages I had. I
couldn't imagine how other women coped," she says.
In 1994, Sisters Network was born to help provide support to
African-American women with breast cancer.
"I needed to talk to other survivors like myself. It really helped
to be able to dial a few numbers and ask questions: Did it hurt? What kind of
chemo did you have? How long does treatment last?"
"Sisters Network is committed to increasing local and national
attention given to the devastating impact that breast cancer has on the
African-American community," Jackson explains. "There are very few research
grants out there for folks to study us specifically. One of our goals is to do
some research on ourselves that we can collect in each chapter," she says
enthusiastically.
The group has some 700 survivor members nationwide, in 18
chapters, as well as some 40 medical and other advisors, including an
epidemiologist who can help with such research, says Jackson.
Jackson, who served as president on a volunteer basis for the
first three years, says she recruited members everywhere, using any and every
opportunity.
"If my husband and I were standing in line buying tickets at the
movie theater, I would talk to people about it. At the grocery store and in
hospital patient waiting areas, I talked about it. At restaurants I talked
about it. I talked about the organization wherever I went," she laughs.
Jackson, still president, also works for the Houston YWCA as local
coordinator of the Y's national Encoreplus breast cancer screening program. She
also sits on the board of the National Breast Cancer Coalition.
Making a Healing Difference
More and more members and some limited funding began to come.
Monthly meetings of 30 to 40 regular participants now feature guest speakers on
medical aspects of the disease, nutrition, pain management, spirituality and
other helpful topics.
"In the sharing portion of the meeting, women are freed up to talk
not only about their operations, but also about their personal feelings. This
brings release from fear, depression and anxiety about what comes next," she
says.
"We tell the truth in these meetings. This is not a walk in the
park. We show models of reconstructed breasts, and ask, `Is this what you
thought it would look like?' We offer invaluable support to one another," she
says.
Support is given outside of meetings as well. For instance, a
member undergoing a bone marrow transplant in a chapter where no one else had
this experience is put in touch with members of other chapters who have had
such a procedure.
Jackson says members also accompany one another to doctors' visits
and serve as advocates for one another.
Recently, Jackson accompanied a 30-year old woman to her doctor
who was suggesting surgery. But Jackson helped her ask about other options and
the patient opted to try chemotherapy first.
"This kind of support is very important for those who receive it.
We stand up for people who cannot stand up for themselves," Jackson says.
Sisters Network Inc. also provides other practical advice and
support. "In years past, when African-American women could only get beige
colored hosiery, some poured tea on the hose to make it the right color. Now
there are appropriate shades available. Well, many don't know that the breast
prosthesis also comes in different colors now," Jackson explains.
Jackson can provide 800 numbers to those who are interested in
companies which offer specialty medical supplies for breast cancer
survivors.
Community Involvement
The organization reaches some 30,000 persons annually through its
literature and awareness campaigns. Its first year and each year since, Sisters
has sponsored the Gift of Life Block Walk, which involves door-to-door
canvassing over a 20-mile radius. Volunteers pass out literature and provide
lists of free services with contact names, while husbands circle the area in
cars, providing extra supplies, water and moral support.
Jackson says the success of this effort confounds naysayers who
initially thought it wouldn't fly. "Some said that no one will open their
doors, no one will listen and no one cares, all of which proved to be
wrong."
This month, the organization begins its Pink Ribbon Awareness
Campaign, which it hopes to run every other month. Senior citizens and Girl
Scouts have been enlisted to purchase supplies and make the ribbons. These will
be distributed with literature at churches and other organizations.
Jackson says the group would like to involve nursing associations
and sororities in the campaign soon so that at least 50,000 people may be
reached this year.
Shoestring funding and the emotional difficulty of facing the
deaths of members aside, Jackson says her work with Sisters has been a
wonderful experience.
"It [breast cancer] is a negative situation that we have turned
into a positive."
For general information or the organization's instructional guide
for starting your own chapter of Sisters, contact Sisters Network Inc., 8787
Woodway Dr. Suite 4207, Houston TX 77063 or phone 713-781-0255 or 800-422-2898.
|
