Exploring the company we keep at UCI and beyond

Roller derby girls. God Without Religion. Harry Potter enthusiasts (fanatics?). These are a small sampling of the groups and organizations that have formed at the University of California, Irvine (UCI) and around Orange County. Members share a devotion to their cause and a desire to pursue it in collaboration with others, which are the subjects we examine in this blog.

Saturday, March 13, 2010

Breast Cancer Activism within Orange County: a Look at Susan G. Komen, Support Groups, and Online Outreach.

Looking at different forms of breast cancer activism within Orange County, and experiencing a night at Susan G. Komen's Mascureade: a celebration of wellness for breast cancer survivors and co-survivors.

by: Nicole Del Castillo

It is 6:35 p.m. on Friday, March 5th—an uncomfortably chilly evening, walking the short distance from the crowded parking lot to the glowing building nearby. Upon entering the Costa Mesa Neighborhood Community Center, one can immediately feel its warmth. Smiling faces light up the lobby, where guests are checking in, chatting, and signing up for raffles. Various young volunteers, dressed in white shirts and wearing pink ribbon pins, distribute brightly colored sequined masks. The vibrancy only increases within the main banquet room, which looks as if it has approximately half way reached its 400-person capacity. A choir sings on a stage, vocals barely audible among the loud enthusiastic crowd of guests who serve themselves food, order drinks, and sit at numerous tables covered in hot-pink tablecloths. As time passes, the room fills with even more guests who are all present for the Susan G. Komen’s Mascureade: a celebration of wellness for breast cancer survivors and co-survivors.

Mascureade is an event that provides breast cancer survivors and co-survivors a chance to connect and celebrate in wellness, and is one of the many ways in which Susan G. Komen reaches out to women who have been diagnosed with breast cancer. Other efforts of the world-wide organization include funding for research, providing support through established groups in hospitals, funding for financially struggling patients, and Race for the Cure—a series of 5k runs which take place through out the country, raising money, awareness, celebrating survivors and honoring those who have passed on among many other things. There are over 126 affiliates within the country, including Orange County, which has been a big leader in breast cancer awareness for twenty years. Lisa Wolter, the executive director of Susan G. Komen’s Orange County affiliate, states that the reasons why Orange County is such a successful affiliate are numerous. Wolter describes the affiliate’s founders as smart, dedicated women who have sought to make the organization a priority within the community. She states that the affiliate has a strong interaction with the local hospitals and health care systems. Additionally, Orange County is a somewhat geographically small county with a dense population, so the affiliate is able to reach out to a lot of people and get many involved.

Yet, breast cancer activism within Orange County is not only organization-driven, but is also grass roots driven. Many breast cancer survivors and advocates are leading efforts to spread breast cancer awareness and support within Orange County. One instance of this is Ernesta Wright, a woman who, seeing a need for African-American breast cancer awareness, started a support group in Orange County geared towards African-American women. Today, her support group helps dozens of women cope with their diagnoses. Another instance of grass roots activists is Beth Griffith, an Orange County breast cancer survivor. Beth provides support for other breast cancer survivors through an online newsletter, called the Health-e Posse, which reaches several women throughout the country. Thus through organizations and breast cancer advocates, Orange County teems with breast cancer activism.

Back at Mascureade, the theme of wellness resonates throughout the evening. About the event, Wolter states: “This is a celebration of survivors. It is a great way that we can really acknowledge that women live with breast cancer or are cured. It is not a death sentence. People need to be aware that they can thrive.” In the back of the banquet room, groups of people smile and laugh as they get their pictures taken in front of a vibrant background filled with pink and black hearts. The tables begin to fill more and more while the guests serve themselves roasted vegetables, slices of cheese, and sip on wine. Voices begin to die down as the emcee walks on stage. He welcomes everyone, and introduces the event’s chair and co-chair, sisters Rebecca Hultquist and Laura Melendez. The two speakers smile as they walk on stage, each wearing a flash of pink. Rebecca introduces herself and her sister, and holds up one of the brightly sequined masks that can be seen throughout the room. “This mask that I am wearing represents the fun side of us that likes to celebrate with our friends. Underneath, there are many different masks that we wear here tonight.” Around the room, the diversity of guests shines—some young, some old, survivors and co-survivors, women and men of different backgrounds.

The meaning behind the Mascureade theme is described in a letter from Rebecca to all attendees, which reads, “I suggested the theme of MasCUREade for a few different reasons. As women we sometimes feel like super heroes, and super heroes usually wear masks. I feel like in my own life I wear many different masks and for many different reasons. The majority of my time right now is spent wearing the mask of motherhood. It encompasses being a wife and full time stay at home mom to my three beautiful daughters. When I remove that mask I reveal myself as a unique individual - strong, intelligent, and beautiful. There is also the mask of being a breast cancer survivor. Sometimes I wear this mask as an advocate or as a volunteer or as a supporter of another woman battling this disease. Sometimes it's ok not to wear a mask at all. It's then that I remember I'm just an ordinary woman who happened to have been diagnosed with breast cancer when I was 33 years old.” On stage, Rebecca is confident, happy, and stands with her sister and co-survivor, Laura. In describing co-survivorship, Rebecca states, “Mask or no mask we're all just everyday women trying to get through a breast cancer diagnosis together.”

One in eight women will be diagnosed with breast cancer in her lifetime. According to Lisa Wolter, “Fifty-five percent of the African American women who live in Orange County will be diagnosed at later stage than non-hispanic white women. And 26% of Latinas will be diagnosed at later stage than non-hispanic whites. So the big difference here in Orange County is those populations not having access…and so the mortality is higher.” Because of these troubling statistics, Susan G. Komen has made it a goal to reach out to these populations diagnosed at later stages by promoting early detection, breast health education, and helping provide access to good health care for every woman in need.

Seeing the need for breast cancer awareness and support within the African-American community, Ernesta Wright, an Orange County native, founded Sisters Connecting—a monthly breast cancer support group located in Tustin, aimed at providing support, education, and guidance for African American women who have been diagnosed with breast cancer. Ernesta states, “I didn’t want to ask the question why there wasn’t a support group in particular for African-American women [in Orange County].” So Ernesta founded the group herself, with the help of breast cancer survivors who were equally passionate about the cause. During support group meetings, there are guest speakers, informational discussions, as well as spiritual and emotional support. Breast cancer victims share their journey and experiences with other members of the support group in order to relate to one another and find a shared commonality. The group also promotes healthy lifestyle changes in order to reduce the risk of recurrence. It is a striving for wellness.

Back at the celebration, the room bursts with laughter. Pairs of guests look into each other’s eyes and laugh. Some are real high laughs, some genuine, while others are forced. When someone finishes laughing with one person, they turn to the next nearby guest and laugh. The exercise is called Laughter Yoga—one of the many events of the night. Sue Synder, a small, older woman, radiant with pep and energy, leads the activity. “Laughter does a lot for the body, and the body doesn’t know if you’re really laughing or pretend laughing,” says Sue. “We do this to reduce stress, anxiety, depression, and to boost our immune system.” After a few more laughing exercises, stretches, and positive thoughts, Sue thanks everyone and departs. The following events of the night include a cooking demonstration by Chef LaLa, who shows the guests how to whip up a healthy meal, with various healthy ingredients such as fish, turmeric, and leafy greens; dance performances; and an awards ceremony for most inspirational breast cancer survivor and co-survivor. Yet, it seems as if every woman and man in the room deserves the award.

Another inspirational breast cancer survivor is Beth Griffith. Beth is an Orange County local who was diagnosed with stage II breast cancer on October 11, 2007. After undergoing chemotherapy, surgery—including a bilateral mastectomy and removal of ovaries—breast reconstruction, and radiation, Beth is now cancer-free. Through her survivorship, Beth has endeavored to reach out to other breast cancer survivors in an online Breast Cancer Awareness eZine called the Health-e Posse. The latest issue of Beth’s newsletter starts out with a journal entry wishlist. An excerpt reads I wish I didn’t still have a small ‘bald spot’ on the top of my head from when I was bald…
I wish I didn’t have to worry so much and have anxiety about how I eat, exercising, living a long life.” The rest of her newsletter includes articles on the latest breast cancer discoveries, anxiety tips, healthy food recipes, and an inspiration corner. Initially, Beth started a face-to-face survivor meet up group, but was met with a lack of attendees. Beth states, “What happens is breast cancer survivors can go two ways: one—they need a lot of support, so they usually attend support groups that are already established within hospitals. And the other side of that is that a lot of breast cancer survivors just want to move on with their lives.” Beth’s initial vision for the group was to have a group of survivors who all have the same languaging and who understand each other in order to support each other in moving forward with their lives. And although Beth’s meet up group never really took off in person, it has taken on a different form through her newsletter, where she communicates with a network of breast cancer survivors throughout the country.

At the end of the night, music blares from loud speakers on both sides of the room. The dance floor is filled with guests who are moving around energetically. The rest of the guests are preparing to leave, and amongst the white walls of the banquet room, one of many pink dry erase board stands out. The center reads “What I’m Looking Forward To…” around which dozens of responses have been scribbled by many guests throughout the night. And at the top left corner of the board, in black squiggly print, a certain response reads, “…a day when I see only smiles, hear only laughter, and feel only joy. A day where we are all happy (and breast cancer free!)” Guests exit the warm building, and head back into the chilly night.

Reporting notes:

-3 interviews: an interview with support group leader Ernesta

Wright, an interview with Lisa Wolter, Komen OC chair, and

a lengthy interview with Beth Griffith, a breast cancer survivor.

-4 hour observation of Mascureade event

-online breast cancer research, research on Komen website,

letter from Laura Melendez and Rebecca Hultquist, Mascureade

press release from Lisa Wolter, Health-e Posse newsletter

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