Website takes a utilitarian approach to cancer
Instead of appletinis at a Manhattan bistro, we're having lunch at the (nonetheless girly) Thyme & Dough cafe in Dripping Springs. But blogger Brenda Ray Coffee's approach to breast cancer survivorhood reminds me of a "Sex and the City" episode.
"In many ways, the site is like that," says the Boerne resident, whose "Brenda's Blog" was named "Top Breast Cancer Blog" by Blogs.com. "We talk about hair and nails and diet and men, all those things girlfriends and sisters talk about."
Coffee, a writer and documentarian, launched Breast Cancer Sisterhood (www.breastcancersisterhood.com ) last November as a forum for obscure questions and humorous conundrums (finding realistic nipple substitutes, for instance. Raisins anyone?), as well as potentially life-saving tips, such as don't floss your teeth while on chemotherapy. All the "seemingly small details" she couldn't find when she was diagnosed with estrogen-fueled breast cancer in August 2004. That discovery led to 10 cancer-related surgeries and eight rounds of chemotherapy treatment, but Coffee isn't defeated in the least. She just stopped taking a five-year post-chemo drug and is cancer free. She's striking back at the disease with a vengeance — and a wicked sense of humor.
With the droll wit of an Erma Bombeck and the sometimes steamy approach of a Cosmopolitan advice column, Coffee is filling a much-overlooked niche for women who need resources that are neither medically overwhelming nor focused solely on one person's survival journey. Already her sisterhood has hundreds of families and receives up to 10,000 hits a month.
And later this month, she will self-publish two books on breast cancer survivorship — one, "The Breast Cancer Sisterhood, A Guide to Practical Information and Answers to Your Most Intimate Questions," includes essays by Elizabeth Edwards, estranged wife of Sen. John Edwards, actor Richard Roundtree and high-profile San Antonio anchorwoman and survivor Leslie Mouton. The second book is "Husbands and Heroes: The Breast Cancer Caregivers." For both, Coffee is negotiating with Amazon.com and expects the site to sell them by end of June.
But the Breast Cancer Sisterhood website is at the heart of her mission; Coffee considers it a ministry, even, for cancer survivors and their spouses and children.
Some of the topics, of course, are heart-wrenching; others are downright hilarious, like what led to her raisin-as-nipple breakthrough: A man at her gym dropped a barbell on his foot when he noticed that his work-out neighbor had only one nipple.
"I knew then that I needed to find something!" says the honey-blond woman of indeterminate age, sitting with me amid bougainvillea outside Thyme & Dough. "Listen I've tried everything. Small (round) earrings, or marbles. Marbles were too big and grapes are huge! Then I noticed this dried up box of raisins in my refrigerator, and I thought, hmm "
As Coffee explains, you just tuck one — or two, depending on how many nipples you need — snugly inside your bra cups and voilà! Nipple problem solved.
"You really have to find humor here. You've got enough negative when you're dealing with life and death things. ... Humor's a coping mechanism, it really is."
Of course, it's not all sweetness and light on the sisterhood site, which Coffee began more than two years ago by filming over 100 videos for each member of the breast-cancer "family" (patients, survivors, spouses, children and caregivers). She later launched the site with that content along with reams of links, blogs, comments and portions of the books Coffee's media company is about to publish. So, for all the "how to keep sex alive" or "where are the best wigs" content, there is just as much heady and typically overlooked information — such as blogs for husbands of recently diagnosed women. The theme of that one, Coffee says, takes cues from husband James' motto: '"Hey guys, it's time to cowboy up!"
But the main thing Coffee wants to do is to help sister survivors in distress or provide some levity for those who have come through the worst. Coffee knows of which she speaks, having lost her father to an unidentified cancer when she was 12 and her first husband to lung cancer when she was 37. So when breast cancer struck her — she has no history of it in her family — she was already a storehouse of knowledge and survivors' strength, and she determined to create the sort of resource that she couldn't find when she first fell ill.
"When you are given the diagnosis, the floor just drops out from underneath you. It's the most panicky terrifying feeling I can ever imagine," she says. "And it wouldn't go away. You can't think of anything else. \u2026 So, I got on the Internet and started trying to find information, and it went from one extreme to another. It was either like Journal of the American Medical Association or technical papers — and you scare yourself to death with those! — or it was somebody's breast cancer website, and they'd set it up mainly to inform friends and family about their treatment and therapy."
Two other close friends were diagnosed with the disease at the same time as Coffee. Tragically, one of the women died after she was clear of cancer. She didn't realize the degree to which chemo had compromised her immune system, and she nicked her cuticle while trimming her fingernails. Thinking the "minor infection" would take care of itself, the friend postponed going to her doctor until the staph was too far gone.
"I thought to myself, 'There has got to be a way to prevent women from falling into some of these holes,'" Coffee says. "When I turned up with breast cancer, nobody was talking about survivorship then. And it's still not a topic that's big. What's mainly out there now is 'the cure.' The focus is there — as it should be. But once you're diagnosed, you're kind of dropped off the edge. \u2026 Then when my friend died after cutting her cuticle, that hit me so hard \u2026 It was at that moment that I decided I was going to draw on my strength as a writer and filmmaker, and in some way, I was going to empower women with the knowledge that they need — not only them but their families. There's very little for husbands out there. \u2026
"So this site, the things that are unique about it are, It's about survivorship — how do you get from the point of diagnosis through treatment and then resume your life? How do you find your new normal, and how do you do this with your family still intact? ... Part of what I want women to know is the holes they can fall in, and that they don't have to fall into those holes."
The other side of the spectrum that Coffee brings to her site — and brought to our coffee session — is that there is much to be said for post-diagnosis life. Life after breast cancer, if you will. Things from positive thinking, personal faith/prayer and mind-body healing, even (Coffee's done a great deal of pre-surgical hypno-therapy and believes it cut back on the amount of anesthesia needed during surgery as well as post-surgery pain meds), to the latest DNA tests which tell women, based on everything from their weight and age to diet to family history, what their odds are of coming down with breast cancer.
Through it all, Coffee's advice to her sister survivors is: Keep it positive, advocate for yourself, find a spiritual grounding and whatever else you do, find the humor, find the laughs.
"Hey, 10 surgeries and eight chemo treatments later, I'm like the Energizer Bunny! I just keep on ticking!"