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Support Systems

Support Systems

Published: 10/01/2011 by Sandra Gordon

» Health & Wellness

Breast cancer isn’t a disease anyone should battle alone. Sharing the experience with others can save your life and transform everyone around you.

Having strong emotional support when battling breast cancer — or any other illness — can improve women’s chances of survival fourfold compared with those who keep their situation to themselves, according to new research. Here, four inspiring women reveal the life lessons they’ve learned about asking for help, and how the support they got made them courageous and strong.

When Wendy, a software marketing executive, was diagnosed, she began sharing the details of her treatment — a lumpectomy and chemotherapy — in e-mails to her family and friends. “Responses were monumentally supportive,” Wendy says, but over time they tapered off. Worried that her frequent updates were bothering the recipients, Wendy decided to create her own personal breast cancer blog. On the blog, she detailed her treatment and displayed photos, such as one of her head being shaved.

Blogging was ideal because it wasn’t intrusive. “I could write when it felt comfortable for me, and my friends and family could read my updates and leave encouraging messages when it was convenient for them,” says Wendy, a mom of two. Over 200 people signed in.

BIGGEST CHALLENGE: Being honest. During treatment Wendy thought it was important to stay positive. “The photos I posted show me laughing while trying on hats after my first chemo treatment, but inside I was scared to death,” she admits. It wasn’t until she went through seven weeks of almost daily radiation that she changed her tactic.

“I stopped worrying that I’d bring everyone down. Giving myself permission to feel the fear and anger and to then write about it was so therapeutic,” she says.

ADVICE TO OTHERS: “When you’re diagnosed with breast cancer, it’s critical to your wellbeing to connect with others who are going through something similar,” Wendy says. That became clear to her after she began receiving countless messages from women she didn’t even know — saying things like, “Your blog really helped me find strength and not feel all alone in my own breast cancer battle.”

“I thought, if my story helped that many people, imagine if I could create an environment where anybody could do this,” Wendy says. She eventually left her corporate job to run, a nonprofit site she created to provide newly-diagnosed breast cancer patients with their own web space for posting diary entries and photos. They can search through the stories to find women with a similar diagnosis and treatment situation. Even though it took a breast cancer battle to make it happen, she says, it was a dream come true. “I always wanted to do something that was going to help others.”

Patience was still breast-feeding her youngest son when she was diagnosed with breast cancer three years ago. “I felt a pea-size lump but I didn’t think anything of it because nursing causes your breasts to change so much,” says the country-music singer/song writer. Soon after, a baseline mammogram revealed a 5-centimeter tumor. Patience underwent a mastectomy, reconstruction, six months of chemo and a year and a half of drug therapy to reduce the risk of recurrence.

BIGGEST CHALLENGE: Asking for help. With two young children (7 and 4), Patience knew she’d need assistance around the house after her surgery. She felt too shy to call neighbors for any favors because she and her husband, Van, were new to the area.

Fortunately, her eight siblings generously pitched in however they could. One sister, Adelia, who lived an hour away, accompanied Patience to get second and third opinions, all the while taking notes. Adelia wasn’t afraid to talk with the neighbors, who were happy to help organize dinner deliveries for two weeks after Patience’s mastectomy. “Adelia was the commander-in-chief of my care,” says Patience, “and my brains during chemo.” Another sister, Susanna, secretly collected $5,000 from the siblings so Patience and Van had cash to pay for child care when needed. The siblings (and siblings-in-law) also took turns traveling to Patience’s home to help out. Plus, her mother-in-law, Nicki, often came to watch the boys. “My family really rallied,” says Patience, who is the youngest of the siblings.

“If you’re diagnosed with breast cancer, let others know you need support, even if it means asking a few point people to spread the word for you,” Patience says. “I had my handful of dark days, but what I remember most is the parade of love I received after my diagnosis and during treatment. The experience made me realize how really lucky I am.”

A tax attorney and mother of three young boys (a 12-yearold and 8-year-old twins), Lynlee was diagnosed with breast cancer after finding a lump during a self-exam. Throughout her diagnosis and treatment — which included a mastectomy, reconstruction, chemo, and the surgical removal of her uterus and ovaries, which sent her into menopause — Lynlee continued to work 50-plus-hour weeks for an accounting firm.

“I needed to keep going to support my family,” says Lynlee. Plus, it was good for her mental health. “Working made me feel like I would survive,” she says. Her employer temporarily suspended her review process and lightened her work load.

Keeping up the façade. Within a few months, Lynlee’s supervisors began giving her major projects again. “I couldn’t blame them. I didn’t go on disability and worked hard to not look sick,” she says. Still, it was nearly impossible to draft the complicated, 100-page legal memorandums her job required.

“During chemotherapy I was wiped out mentally and I couldn’t have been weaker, but I tried my hardest and just plowed through, sometimes staying up until 2am to get projects done,” she says.

ADVICE TO OTHERS: Level with yourself and your employer. Lynlee realizes she shouldn’t have pushed herself so hard. “When you’re diagnosed with cancer, you can’t possibly produce like you used to,” Lynlee says. She and friends decided to form linksinpink. com, a charitable non-profit organization dedicated to educating employers and supporting employees and their families faced with catastrophic illness. “Right away, talk to your boss about creating a new job description, to be reassessed monthly as you move through treatment, which redefines your duties,” Lynlee suggests. “Many top companies have traditional employee benefits but no specific policies for employees going through a life-threatening illness.”

After being diagnosed with breast cancer, Valerie, a divorced mother of two, relied on The Sisters Network, a nonprofit organization founded by African American breast cancer survivors (chapters exist in Tampa and Orlando). Women in the organization helped Valerie cope with a bilateral mastectomy, reconstructive surgery, eight cycles of aggressive chemotherapy, and a year of drug therapy.

“After every chemo round my entire body felt nuked,” Valerie says. The Sisters Network stepped in to drive Valerie to doctor and chemotherapy appointments when she was weak. They delivered prepared meals to her house so she didn’t have to cook for herself and her children, a 19-year-old daughter with cerebral palsy and a 16-year-old son. It even paid for medical care her insurance didn’t cover.

BIGGEST CHALLENGE: Getting her doctor to listen. Several times during chemotherapy, Valerie became so nauseated that she had to be hospitalized. Nonetheless, Valerie’s oncologist kept the chemical cocktail coming. Fortunately, “The Sisters Network helped me become an advocate for my own care,” Valerie says. Because of their beenthere advice, she began having some of her appointments with her oncologist’s nurse practitioner, who was able to get her dosage adjusted to make chemotherapy more physically tolerable. “The Sisters Network support was invaluable because its members were survivors who spoke and listened from experience. Sometimes someone from the Network would just come to my home and give me a hug and acknowledge where I was in the treatment process.”

ADVICE TO OTHERS: “Get support from those who’ve been there,” says Valerie, who has been cancer free for two years. Nobody listens to you and understands what you’re going through better.” She’s now providing support to others by volunteering with the Susan G. Komen Reach Out for Life: Somebody Needs You community-based campaign that promotes breast cancer awareness and provides free screenings for African- American women over age 40. “While I’m ready to put my experience behind me, I want to stay present so I can help others,” she says. Her oncologist and surgeon often refer newly diagnosed women to Valerie, who’s eager to help. “When the women call, I can hear their fear, hurt and anxiety, and I let them know they can make it,” she says. “Women’s power comes from embracing the challenges placed in our lives.”