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www.GenerationAmerica.org: Piano Lessons: A Story of Cancer Survival, and Healing

31-Dec-2010

Author: By Cate Smithson | Dec 17, 2010
Link to the original article

Brenda Coffee was taking a piano lesson on her 13th birthday when she found out her father had died. People didn’t talk about cancer with their children then. Brenda didn’t even know what type of cancer it was as her memories leading up to his death involved little more than sitting on the edge of his sick bed, making small talk.

“Like strangers,” she recalls. But children can sense what’s plaguing a household, and Brenda could sense the tension between her mother and neighbor when the pair picked her up from her piano lesson that day. Then, her mother had a nervous breakdown and, barely a teenager, Brenda became her own mother’s parent.

As an adult, Brenda vowed to not have children based on the tumultuous mother-daughter relationship that unfolded. She and her husband Phillip led prosperous, fulfilling lives – until he was diagnosed with late Stage IV lung cancer. For her this time was different than her father’s fight: Phillip, for all his success as a scientist and entrepreneur, he “just withdrew,” leaving her as the primary caregiver, again.

She worked to help her husband cope with a disease for which there was no cure, even going so far as to immerse herself into an area of treatment dealing with monoclonal antibodies, which deliver targeted therapy straight to a patient’s cancer cells. M.D. Anderson, Houston’s renowned cancer treatment center, was so impressed by Brenda’s work they offered her a job.

“I felt like I had the power of life and death but not the power to illicit a conversation with my own husband,” Brenda says. “This really is when families need each other the most.” Phillip kept her at a distance until he, too, lost his battle with cancer. Later, Brenda remarried and was living outside of San Antonio, Texas when she noticed a lump in her breast. The benign lump, it turned out, was covering a malignant tumor.

Now, it was her turn. She underwent a lumpectomy, then a single-mastectomy, then chemotherapy and a later, preemptive second mastectomy. Most people would say much of her life has been plagued by cancer, in one form or another. Of course millions of lives are affected by the disease. What is different in her case is that she credits cancer as being life-changing in a different way.

She says her lifetime of experience with the disease is a gift because from it she became the author books, how-tos-on coping with cancer, either as the patient or a spouse, both physically and emotionally. She launched a website and has bigger media plans, all to further her advice to victims, caregivers and spouses.

Because uniquely, she has been all three.

In fact, she may be one of the only people publicly crusading for survivorship – that is, providing an emotional resource for patients and their families from the point of diagnosis, offering support throughout treatment and helping families and individuals find their new “normal,” whatever that may be.

“Breast cancer awareness has generally only dealt with finding a cure for cancer, not dealing with the diagnosis,” she says. “There is nothing out there on survivorship. What happens when you get cancer? You’re pretty much left to fend for yourself.”

For Brenda, being diagnosed with breast cancer wasn’t the scariest part of her battle, and neither was the chemo. It was the aftermath, the remission. Cancer researchers are always looking for a cure and oncologists are focused on administering treatment, two plainly crucial elements to dealing with cancer. Maybe it made sense for a period of time not to focus on the post-treatment journey: after all, if fewer patients survived cancer in the past, less concern was raised about counseling patients throughout their lifetimes.

“There are so many women, like me, who get to five years after diagnosis and the doctors just say, ‘Okay, you’re done, go live your life’ – and you’re terrified. You sit on the edge of your seat your whole life like it’s a white-knuckle airplane ride. You’re worried that it will come back. This is a whole new area of survivorship that I’m trying to raise awareness for.”

Looking back on her late husband’s cancer, Brenda wishes she’d done some things differently. Phillip’s struggle was different than Brenda’s, and he coped with his diagnosis and treatment differently. He removed himself from his life and kept Brenda “at arm’s length,” she says. Brenda couldn’t have understood what Phillip went through; she didn’t even realize the medical costs had turned the affluent couple’s bank account upside down and shaken every last coin out. But his withdrawal was deep-seated and, not knowing what she knows now, Brenda watched as Phillip sank further into cancer-induced abandonment.

“I would have insisted that he talk about things. That he have conversations with his daughters,” Brenda says, looking back on Phillip’s battle. “I would’ve said, ‘People are in awe of you, and you’ve kept a lot of people at arm’s length. And you kind of like it this way – you like being able to be God. You’ve managed those you love most from afar according to your comfort level. You need to know that this isn’t just about you.”

Brenda’s own battle with cancer helped her further understand the dangers of self-removal. Her second husband, James, and his son, Kirk, were an enormous source of support for Brenda, but finding the tools within to keep cancer from destroying your life is a challenge. The hardest part is keeping yourself from thinking too much about the cancer.

And, as Brenda says, women with fatal diseases worry abut their families. She remembers the first time she attended the Bible study she still goes to today – it’s held at the house of her doctor and his wife, who are close family friends. Her hair was just beginning to fall out from chemo. That’s when she noticed another woman in attendance; one Brenda thought was pretty and wore her hair similar to Brenda’s own. “‘This is why I’m here,’” she thought to herself. ‘‘I’m here to find James’s next wife.

“Thoughts are things,” Brenda says. “You have to create your own body chemistry. Allow yourself to take a break from cancer. I made a conscious decision that when somebody would call to check on me, I would say, ‘I’m doing just great. But enough about me. I want to know about you.’ And then you hear them say, ‘Wow, it sounds like you’re doing great!’ And you start to think, ‘Well, I must be doing great.’ We have the ability to heal ourselves – that doesn’t mean cure ourselves – but women who are Stage IV can still heal on a lot of different levels and cope with it emotionally.”

This notion of healing oneself in the face of a disease as relentless as cancer can seem, at first glance, overwhelming, indeed unlikely.

And yet, her approach is reflected in a somewhat overlooked approach to the disease known as psychosocial oncology, which studies the effects of cancer on a person’s psychological health and vice versa. There also exists what’s known as oncopsychology, or the study of the psychological responses of those indirectly affected by cancer.

There are only about 400 psychosocial oncologists in the country. But some studies show that the endorphins our bodies produce when we’re happy versus those produced when we’re sad are extremely different. Correlating the common methods of cancer treatment with the study of patients’ brain waves and body chemistry could yield drastically more positive results for those battling cancer.

Brenda’s experiences with cancer made her realize there was a lack of resources that would help patients and their families learn about these things. And so she combined her business skills – Brenda describes herself as a “serial entrepreneur” after having made a career as a managing consultant for a publicly held company – founded the Survivorship Media Network, whose mission it is to produce online, television and print material for cancer patients.

BreastCancerSisterhood.com was the first “bite out of the elephant,” as Brenda puts it. Started just a year ago, the site currently receives 20,000 hits a day and has been named one of the Top 10 cancer blogs by Blogs.com. Her two books, The Breast Cancer Sisterhood and Husbands and Heroes: The Breast Cancer Caregiver, plainly advise breast cancer patients and their families on how to deal with the various physical and emotional effects cancer takes on a person. And her ultimate goal is to raise enough venture capital to start The Cancer Cable Channel, which she says would cover every kind of cancer through programming that highlights cutting-edge cancer research, as well as different coping mechanisms and the like – a combination of The Science Channel and Oprah, she says.

“We have The Weather Channel and The Food Network and The Military Channel. Why not?” she says.

Brenda’s fight with the disease – she’s totally cancer-free now – showed her strength within herself she never knew she had. When she tells people her experience was a gift, her husband James says, “I hate it when you tell people that. I wish it was a gift that you never received.”

“But it’s made me a different person,” Brenda says. “This is my ministry. I’m making a difference and I know that when I talk to families. There’s a woman that, two weeks ago, told me I kept her from committing suicide. We have no idea the impact that this is going to have on somebody. Life’s not all about Brenda – it’s not about me anymore at all.”

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