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A diagnosis of breast cancer comes as a devastating blow to the women who hear those two words. Many of the women, in the prime of life, find themselves feeling blindsided by the disease -- betrayed by their own bodies.
Some women, like Chrissy Hooper, 25 at the age of diagnosis, find themselves unable to sleep after hearing the news, instead poring over any breast cancer literature they can get their hands on.
Eventually, the diagnosis begins to sink in and they undergo treatment for the cancer, but that's not all. They must find a way to cope and heal after hearing such life-altering news.
Just like each disease is different, each woman's way of dealing with a diagnosis of breast cancer remains unique and personal. Here are their stories.Online Journaling
Before her diagnosis of Stage II invasive lobular carcinoma, Stacey Hooper of Vancouver, British Columbia, had only considered writing a weblog, a type of online journal. Upon hearing news of her diagnosis in February 2005, the former special effects costumer for the film industry started her blog, Von Krankipantzen.
A single, 35-year-old woman, Hooper wanted a way to keep in touch with friends and family and let them know about her treatment. She credits her cancer as a means of opening herself up through her writing and expressing her new life after a cancer diagnosis.
"I think I opened up about myself and got more personal much quicker than I probably otherwise would," says Hooper, now 37. "I mean, I have to talk about my boobs so some boundaries were dropped immediately."
After five and a half weeks of radiation, nine sessions of chemotherapy, and a double mastectomy, Hooper spent a great deal of her time housebound, feeling weak and anxious. Many of her friends did not call or visit after learning of her diagnosis, though several members of the blogging community, some having cancer themselves, would go out of their way to send notes and care packages.
"People were really wonderful," says Hooper, now in remission. "When you have cancer, some days you feel like you are the only person going through it, but blogging helped me get over those feelings of isolation."
She credits her online friends with cancer as helping her though the process, including breast reconstruction.
"We commiserate about these things and how emotionally, and in many ways physically, breast cancer still lingers on. Everybody's experience is different but the similarities bring us together."
Since her diagnosis of inflammatory breast cancer in 1998 at the age of 69, Marian Cromley has talked to 106 women who have walked in her shoes.
Cromley, who lives in Falls Church, Virginia, participates in Y-Me's Survivor Match Program, which pairs women who call Y-Me's hotline with a peer counselor who has the same diagnosis. The program trains peer counselors to provide both information and hope to their callers.
As a peer counselor, Cromley introduces herself as having the caller's same diagnosis nine years ago and that she's "cancer free, alive and kicking."
Unfortunately for her, Cromley did not have anyone to talk to while undergoing treatment.
"You are desperate to talk to someone who has been through this, who can tell you what the next step is going to be," she says.
Before she became a peer counselor, Cromley had her own run-in with a survivor of Inflammatory Breast Cancer. According to Cromley, the woman seemed depressed, tired, and uninterested in talking. She knew there had to be a better way to find someone to talk to.
"Y-Me has given me a second act for my life," says the former reporter. "Talking to other women who are at the beginning keeps alive the memory. They want to know what is going to happen. We tell them what happened to us. Once, we were just as stunned and frightened as they are now."
She acknowledges, several years after her diagnosis, how helping other women has continued to help her.
"Very often, the match will tell me at the end of a call that is has been wonderful talking to me," she says. "That I have helped. That makes it all worth while. But I think the calls do just as much for me reminding me how fortunate I am."
Lanita Moss had an unexpected bump in the road while training for a marathon in 1996: a diagnosis of Paget's disease (often referred to as Paget's disease of the nipple or Paget's disease of the breast; not associated with Paget's disease of the bone), a rare form of breast cancer, at age 32.
Since she did not have lymph node involvement, Moss opted for a double mastectomy and continued training for the New York City Marathon, noting her plans would have halted had she undergone chemotherapy and radiation.
For Moss, the Vice-President and co-founder of the Young Survival Coalition, an advocacy group for women 40 and under living with breast cancer, having something to focus on outside of her disease helped her tremendously.
"It gave me a focus outside of myself," the mother of two says. "I had a bigger thing to think about... It made me feel better about myself."
Since she couldn't run while having stitches, Moss opted to finish reconstruction after her marathon, adding that not having to wear a sports bra (avoiding the nipple chafing that comes with training) was a positive part of her diagnosis.
She acknowledges that breast cancer changes one's body image, though she found that exercise helped her stay positive while dealing with the changes she underwent.
"You feel your body let you down at first," says Moss, who lives in Kansas. "[Exercise] gives you faith back in your body."
For Moss, a big believer in living a healthy life, having a cancer diagnosis helped her step out of her comfort zone.
"I don't think cancer is the end of your life, but the beginning," Moss says. "Breast cancer gave me the courage to say 'I want to put myself out there on the edge and run that marathon, do that 200-mile bike ride.'"
Although she always enjoyed listening to music, Monica McAghon never considered taking up dancing until a friend gave her classes as a gift.
Doctors diagnosed McAghon with infiltrating ductal-lobular carcinoma in fall 1998 at the age of 46. Prior to her mastectomy and chemotherapy, she had always considered herself a sports-oriented person. Though short on experience, McAghon decided to attend a "Healing Dance" class offered by a Middle Eastern dancer, Tahya (who goes by a single name), in Phillipsburg, New Jersey. Tahya's Web site calls dance a healing tool to help you rediscover "a heightened sense of creativity, femininity, and self-esteem."
"I liked that all shapes, ages, and sizes of women attended the lessons, even a pregnant woman, and that we were all encouraged to find our own inner well-being in movement and inspired, creative expression," says McAghon, who lives in Pennsylvania.
She began to bond with the other women in the group through dance and started participating in parties and festivals with the dance troupe. McAghon, who teaches critical reading at a community college, considers the experience of dancing as one that helped her to transition into healing, calling it "a state of physical and psychological well-being."
Dancing didn't end with her treatment. She continued dancing for several years after her diagnosis, including appearing in a "Healing Dance" DVD with Tahya, her dance instructor.
"The dance preoccupied me for several years afterward, as I renewed my comfort with myself and the changes brought by the mastectomy and the chemo treatments," McAghon says. "I took active pleasure in keeping myself fit, focused, and confident through the dance."
Before Elizabeth Swaringen could undergo a single mastectomy for ductal carcinoma in situ in 2004, she had to do something for herself: She scheduled a massage.
"It seemed that having a massage was a logical thing to do before the surgery," says Swaringen, who lives in Pittsboro, North Carolina. "I'm sure that massage had an impact on my being calm (the day of surgery)."
Swaringen, a freelance writer who was diagnosed at age 48 through a routine mammogram, underwent massage at Cornucopia House, a cancer support center in Chapel Hill, North Carolina, that offers services for free to anyone affected by cancer.
"All our services help people cope with the stress brought on by cancer treatment," said Becky Carver, executive director of Cornucopia House. "[Cornucopia House] helps people decide how they can live their lives in the most healing way."
Instead of worrying about her upcoming surgery, Swaringen, who had received massage before her diagnosis but not on a regular basis, decided to cast away any fears.
"I was focused on where I was at that point in time," Swaringen says. "At that point, I was on a massage table. I knew I was in good hands."
Although she had an "always on the move" life as a full-time graduate student, having a mastectomy left 26-year-old Chrissy Hufford feeling inactive.
On the recommendation of a physical therapist, Hufford, diagnosed with Stage II ductal carcinoma in February 2006, started taking yoga classes. She says she enjoys yoga because she can relax and do it at her own pace. "On my bad days, when I'm in a lot of pain, it can be hard to get into, but it is always relaxing," says Hufford, who lives in Pennsylvania.
Elizabeth Swaringen had practiced yoga for three years and feels it helped her recover from her mastectomy. "I feel like doing yoga made a difference in my range of motion post-surgery," she says, adding that she was able to reach the top of a doorway not long after her mastectomy.
Hufford finds comfort in the fact that she can self-pace with yoga, unlike many other activities, which helps when chemotherapy makes her feel tired. She has started taking classes at the local YMCA, where the self-described "bald girl with a bandana in the front of the room" has met a few other breast cancer survivors.
Hufford has also taken components of yoga practice, such as deep breathing and meditation, and used them in other parts of her life. You might find her deep breathing during chemo to de-stress or meditating to clear her mind.
"I almost push myself to get out of the bed to do yoga," she says.
Before her diagnosis of Stage I breast cancer in 2001, Miriam Engelberg imagined herself as one of the "noble" people with cancer, should it happen to her. Instead, she found herself, at age 43, receiving chemotherapy and thinking of the absurdity of it all.
She put pencil to paper, resorting to something she had always loved: drawing comics. Out of that came a comic book published in May 2006: Cancer Made Me a Shallower Person: A Memoir in Comics (Harper Paperbacks).
The title comes as a kickback to one of the ways Engelberg, who is married with a 9-year-old son, has coped with her cancer as it progressed to Stage IV: Doing what she needs to do to get through the day, be it watching TV or reading an issue of People magazine.
She draws and writes about the forgetfulness that comes with "chemo and radiation brain," about the "Don't look into the aperture" signs on the CT scan, and about how Prozac has made things just a little bit better.
Turning to humor to figure out the tougher issues in life isn't new to Engelberg, who previously performed theater and stand-up comedy. "That's the way I think about life," she says. "I love cartoons."
Unfortunately, a recent diagnosis of metastasis to the brain isn't funny news for Engelberg, though she has still been able to explain to friends and family what she feels through her drawings. While she doesn't know for sure how long she has left, purposefully choosing never to look at the numbers given by doctors, she's coming to grips with what she might possibly leave behind for those who know her.
"I was rediagnosed while writing the book," she says. "I feel it is kind of my legacy."
When it comes to describing her feelings of a diagnosis of ductal carcinoma in situ in 1991, Merijane Block, a writer from San Francisco, has no holds barred.
"I was scared out of my mind and had anxiety," says Block, who was diagnosed at the age of 38. "I needed a forum [to express myself]."
She helped found Art.Rage.Us, a traveling exhibit of art and writings created by women with breast cancer, in 1996 after receiving news that her cancer had metastasized.
At the time, Block wrote every day for three years, though her diagnosis of breast cancer helped change the topic.
"It has helped me to say what is unspeakable," she says, noting her works on anger, death, even her own funeral. "When I was actively involved in Art.Rage.Us, it sustained, nourished, and inspired me."
As time has gone on and her diagnosis was changed to Stage IV, Block has found comfort in knowing her words will be around for years to come.
"We all want to leave our mark on the world," says Block, who encourages all women to express themselves creatively. "Not everyone will be famous or invent something important... When and if you die, you may not feel you have gotten things done. Creative expression will still be around."
After a diagnosis of Stage II HER2-positive breast cancer in her right breast at 34, Jennifer Levinson had a bilateral mastectomy (choosing to have her left breast removed as a prophylactic measure) and went on living her life as a young, bald, cancer patient. Many might feel powerless with such an identity, but Levinson used her appearance to demand the attention of some important lawmakers.
After her diagnosis in 2000, Levinson, who lives in Florida, became an activist for breast cancer, attending conferences and lobbying politicians in Washington for more research on the disease. She also became a three-time National Breast Cancer Coalition team leader for their national lobby day.
"I found this voice, and it made me feel I could have some control of this disease," the married mother of a 7-year-old son says.
Merijane Block, a founder of Art.Rage.Us, also turned to activism in the face of a cancer diagnosis. She became an activist in 1991 while searching for a breast cancer support group in the Berkeley, California area. Since then, she has become interested in issues such as patient support and treatment for the underserved, including minorities and lesbians.
"It gave me a real reason to keep on living," Block says. "I got to be part of a growing movement."
Levinson, whose course of treatment included a clinical trial, considers finding high-quality clinical trials to help treat the disease a subject near to her heart. While she knows there are many issues out in the public eye right now, she wants to raise awareness on issues involving breast cancer.
"Activism and advocacy can be very powerful," she says, noting it is not for everyone. "You can feel empowered. Your voice does make a difference."
Life changed for Sue Keitel the day she had her chest covered in plaster. She was diagnosed in October 2005 at 48 with invasive lobular carcinoma and underwent a lumpectomy. Eventually, she chose to participate in Mamorial, a New Jersey-based nonprofit that takes molds of breasts in all stages of the cancer treatment process. The group then turns those "life casts" into resin breasts that will tour the country, raising awareness about breast cancer.
Keitel considers her breast cast "emotional comfort... It gave me the opportunity to believe that my body was not as horrible as I thought it was," she says. "...All of a sudden, you realize you're not the only one... It is a community. It gives you emotional support."
Some of the breasts bear lumpectomy scars, others show the absence of breasts due to mastectomy. The breasts come in all shapes and sizes, with the color of the resin matching the skin color of the participant.
"It is artistic," says Keitel, a seventh-grade teacher and mother of one. "Seeing it is provocative and unusual."
Keitel, introduced to Mamorial by her doctor, calls the exhibit different for everyone. Some may look at it as awareness, others as education.
"It gives you a forum and a voice. It says 'Hey, look at us. Look at what this is doing to us. Let's get some research.'"
While she thinks the project could eventually be a version of the AIDS quilt that could help women move on to their lives, she believes participating gave her her life back. "I made the turn from treatment to survivorship on that day," she says.
Rachel Mosteller is a freelance writer and mother of two in Houston, Texas.
Originally published on LHJ.com, August 2006.