Wrapping Women in Pink Shawls – Eisa Nefertari Ulen

This story originally ran on Indian Country Today:

Wrapping Women in Pink Shawls

Eisa Ulen
10/10/13
Laverne Bichanich (Oneida) didn?t know she had breast cancer. She didn?t understand the importance of monthly self-exams, so she rarely did any. When she did examine her breasts, she figured what she felt was just fatty tissue, since no one had ever really told her what a lump would feel like. She didn?t know she should get a mammogram every year after age 40, so for almost a decade she didn?t get any. A retiree now 70 years old, she didn?t have insurance to cover the cost of an annual mammogram anyway; so, even though her mother had had breast cancer, Bichanich probably wouldn?t have gotten one even if she had understood how important they are for early detection, especially for women like her with a family history of the disease. She didn?t know there are ways to get a mammogram for free.

Bichanich didn?t know she had breast cancer, but she did?and for years that cancer went untreated simply because no one knew it was there. Bichanich might not be alive today were it not for the Wisconsin Pink Shawl Initiative.

Formed in 2007 by 16 women of various tribes led by Teresa Seidel, who was inspired by the Pink Shawl Project that began in Michigan in 2003 by Lorraine ?Punkin? Shananaquet, the Pink Shawl Initiative?s mission is ?to reduce breast cancer in American Indian communities through education, advocacy and service and to increase the number of American Indian women accessing screening opportunities.?

For Bichanich, this non-profit was a literal life-saver. ?When I went to a presentation on breast health,? she says, ?I learned that I should go every year.? Bichanich adds that the Pink Shawls taught her ?that there are programs that pay for a woman to have a mammogram.? She got one in 2010 she says, ?and they found some spots and then they did the biopsy. I was called at home 5 days later, and the doctor said that I had cancer.? Bichanich says she had a mastectomy and also had lymph nodes removed. She went through a breast reconstruction procedure and had to make monthly visits to her physician for an entire year for postoperative care.

?After I had my surgery and saw my scars,? she says, ?I learned that I really should have gone earlier and might not have had to go through this. Nine years was too long. I consider myself lucky. Thanks to Debbie from the Pink Shawls. She told me that I needed to go.?

According to Wisconsin Pink Shawl Initiative Chair Lisa Tiger (Muscogee Nation of Oklahoma), Bichanich?s story is not unusual. ?American Indian women have the lowest five-year survival rates for breast cancer of any ethnic/racial group largely due to delays in screening and a lack of access to screening opportunities and advanced treatment options,? she says. ?Because women do not get screened early, their cancer often has time to develop into a later-stage, and sometimes spread to lymph nodes or other parts of the body, making it more difficult to treat successfully. Further, women often have to travel a great distance to get to a clinic or hospital equipped with a mammogram machine and sometimes that is too much of a burden. There are other ?costs? as well that make it difficult for women to get screened: time away from family, getting off work, the fear that a woman might have breast cancer can be enough for her to delay getting screened. The Pink Shawls attempt to address as many of these barriers as possible and provide opportunities for women to get screened.?

In order to dismantle these barriers preventing Native women from accessing adequate breast health care, Pink Shawls volunteers take charge of different tasks in committee with other volunteers. These Pinks Shawls plan awareness events at powwows and health fairs. Some make crafts and design shawls. Other teams work with other breast health organizations and health professionals who are from and work with Native communities. Pink Shawls volunteer teams also ?stick with women who are in treatment, accompanying them to appointments, providing social support and helping them connect to important services and programs,? Tiger says.

Structured with an Executive Board that oversees administration, the Pink Shawls also has a grant writing team that has recently secured a major source of funding for research from the American Cancer Society and Kohl?s Cares.

?It has been our great honor to receive funding from those two organizations as well as from the Forest County Potawatomi Foundation,? Tiger says. ?Receiving the research funds enabled us to bring our program modeled after the Conversations for the Cure, which is administered by the Susan G Komen affiliate, to our Native community women. We felt that we know our community and we know what works from when we started presenting the Komen Conversation program to our community women. It was the women themselves who told us what they need and how to best serve them. Through these generous funders, we are able to not only talk about breast health but to expand our messaging that we hope will eventually impact our community women?s greater health. Our Dream the Cure Conversation program in SE Wisconsin is focusing on healthy lifestyle choices that result in reducing the burden of disease in Native women. We are now able to expand our screening events, workshops and help women with health navigation for those needing assistance. We are able to sit down with women personally and help them get what they need in the context of their individual lives. We hear what issues they have with access to screening and work with them to find ways to overcome those issues. The funding pays for our half time program manager, travel, printing and supplies. We are lucky to have monthly meeting space provided for us by Southeastern Oneida Tribal Services (SEOTS).?

The Pink Shawls mostly work in the community, with the women in need of assistance but this donated space from SEOTS in West Allis, Wisconsin is crucial. A brick and mortar office is a big item on their wish but, Tiger says, ?For the most part, we are out in the community. We meet women where they are, rather than them coming to us. We also travel throughout the state and visit reservations and hold workshops in tribal health departments and clinics.?

Sometimes the tireless workers at Pink Shawls are so busy helping others that they forget to help themselves. ?I turned 40 (the recommended age for women to begin their mammograms) and 9 months later STILL hadn?t gotten my mammogram, even though I worked with the Pink Shawls and knew that I should be screened. My daughter, Alexandra Tiger, then 12, attended a Pink Shawls event with me and asked me why I hadn?t gotten screened. ?You need someone to encourage you,? she said, ?Maybe all women do.?? The idea to use young people to help spread the word about breast health began with that conversation, and now the Junior Pink Shawls program works with young Native girls and boys as inter-generational health messengers.

?The Junior Pink Shawls now has some twenty members and have received a grant to develop and implement a peer education program with other youth, to train them how to take the message home to women in their lives,? Tiger says. ?It is our hope that these youth health messengers will not only impact the women in their lives and in our Native community, but will grow up with the knowledge of how to take care of their own health and pass on the message to their children one day.? These youth leaders have also developed a public service announcement that can be viewed here:

Since its founding, the Wisconsin Pink Shawls Initiative has presented breast health education at workshops, powwows, health fairs, clinics, area agencies, and conferences. The organization has collaborated on screening events to screen over 100 women each year. ?When a woman is diagnosed with breast cancer, we follow her through her treatment, helping her to identify ways to access treatment, programs that provide wigs or prosthetics and other services that she and her family might need. We don?t stop until we help her to access the resources and services she needs,? Tiger says.

Bichanich is just one of those hundreds. She has continued her relationship with the Pink Shawls to cope and heal from her experience with breast cancer. ?I have gone to a support group about 5 or 6 times until I have felt stronger,? she says. ?I realize that sometimes a person may need the help and support of other women that have gone through the same thing.? Bichanich identifies lack of information, lack of insurance, and lack of family and friends as gaps preventing Native women from accessing quality care. The Pink Shawls Initiative fills those gaps by acting as a bridge to help women access the services and support they need to achieve wellness. For those women standing on the other side of the gap, alone and in need of hand to guide them forward on the path to better health, Bichanich says, ?If you have cancer you can make it through. No matter what stage it is, you?ve got to keep going.?

How to Keep Going

Tiger, who works at the University of Wisconsin School of Human Ecology, has a Master?s degree from the University of Arizona and is completing her doctorate this December, says that these are the tips the Wisconsin Pink Shawls Initiative has for all Native women: ?While there are differing opinions on how often and at what age women should receive breast health screening, after careful research, the Pink Shawls recommend age-appropriate screenings annually. For women 20-39 this means a clinical breast exam by a qualified provider. For women over 40, mammography is appropriate. We also recommend that women know their own bodies. Know what is normal for you. They should know what their breasts look and feel like, and see a provider if they feel that their anything abnormal regarding their breasts. Be aware of changes in size or shape of the breast, itchy, scaly sore or a rash on the nipple, discharge that starts suddenly, dimpling or puckering, swelling, warmth, redness or darkening of the breast. Don?t be afraid or too shy to discuss your breast health, if you note any of these changes discuss it with your medical provider.
Know your risks, talk to your family and learn your family health history and maintain annual checkups.

Breast health is that doesn?t have to be scary and that there are things women can do to make getting their breast health screening a good experience. Avoid caffeine, nicotine prior to your mammogram. Some traditional women may smudge before you go to the clinic, or in some other way do something that is meaningful in your particular tribe. Have a friend schedule her screening at the same time so you can support each other. Get your screening at the same time of year each year to avoid delays. Link it to an important date in your life- the birthday of a child or grandchild. Making healthy lifestyle choices like maintaining a healthy weight, adding exercise to your daily routine and limiting alcohol intake can help with improving your overall health. ?