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Stage IV Breast Cancer & The Will to Survive

Sunday, May 13, 2012

My lower back has been in excruciating pain since Thursday, and I can't get in to see "Dr. Magic Hands" until Monday afternoon. I hesitate to even mention this because many metastatic cancer patients endure far more than I am. In comparison, my back is not even a blip on their pendulum of physical and emotional pain.

I think about friends, like Donna Peach, who are enduring unimaginable pain and suffering due to Stage IV metastatic breast cancer treatments, and I wonder how they do it? Their will to live must be far greater than mine. Perhaps if James were still alive or if I had children, I would do anything to be with them, but James isn’t here, and I don’t have children, so I’m left wondering... What would I do in their position? Would I keep fighting and taking treatments that don’t give me a good quality of life?<PREVIEWEND>

I’d already begun writing this blog when I read “Your Silence Will Not Save You” by Katie Ford Hall at UneasyPink. She writes that when someone dies, we rarely know whether it was the cancer that killed them or the complications from treatment. She thinks it’s in everyone’s best interest to know how effective Stage IV treatments are, plus we should know more about the risks. I second that.

In 1987 my first husband, Philip, died from complications of an experimental Stage IV Lung cancer treatment. Even though it was administered daily, on an outpatient basis at the National Cancer Institute in Bethesda, Maryland, no one verbally told us what to expect. I’m certain complications were mentioned in the fine print on the treatment release forms Philip signed, but no one suggested any downside to treatment other than it might not work. Since it was experimental, I have to wonder whether his doctors even knew the risks? Of course none of that consoled me as I watched Philip die in the back of an ambulance after treatment.

At the suggestion of a mutual friend, I recently spent the afternoon with Alana Stewart, actress, Emmy-nominated producer and best friend extraordinaire to Farrah Fawcett. Alana’s book touched me deeply as she described nearly three years of accompanying Farrah to Germany for what would be numerous painful chemo embolizations, laser and ultrasound surgeries, radiation and blood clots, interspersed with marathon sessions of projectile vomiting. Soldiering on with an unflinching will, Farrah was courageous and hopeful, nearly to the end.

Perhaps I know too much about the odds of beating cancer to do what Farrah did; to be hopeful that I’d be the one in a zillion, megaball, Stage IV lottery winner who’s cured of their cancer. The will to do whatever it takes to survive and protect ourselves and our family is the strongest will there is, and yet, I'm not sure I would endure what many Stage IV cancer patients go through. It would be my fervent hope that a compassionate oncologist would tell me all the facts surrounding my options and quality of life. From what I know, palliative care may be the most loving and humane course of action, and in many cases, can prolong life better than experimental treatments.

If I’m faced with metastatic breast cancer, I know I will be hopeful about some things: that the lives of those I love will be blessed, and that Dr. Susan Love and her Army of Women will find the cause of breast cancer and develop a way to prevent it. We all desperately want a cure, but wouldn’t it be better not to worry about getting breast cancer in the first place? For me, that’s the ultimate survival.

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Where I Go to Meditate

Sunday, May 06, 2012

If you’re a regular reader then you know I embrace hypnosis, meditation and Guided Imagery as some of the most powerful weapons in our cancer-fighting arsenal. A recent dinner conversation with my friend, Nick, reminded me of one of my favorite places, Tulum. It’s where I frequently “go” when I need to get calm and centered and gather my strength. I found this piece about Tulum I wrote in 1992, that I was going to email Nick. I know it’s long, but I thought I’d share it with you as well. Where do you go when you meditate?

"The Place Where the Sky Was Born"
Sian Kaan is magical and mystical. The ancient Mayans said it was the place where the sky was born, ascending from the sea, soaring upward like a giant bird in flight. With each flap of its wings, the great bird painted broad strokes through the air, taking the blue from the sea and the white crest of the waves. Sian Kaan, together with the toucans and herons, the howler monkeys and jaguars, surround and protect my ancient Mayan city of Tulum.

Even the name, Tulum, fills me with wonder and reverence. The energy here vibrates in waves from the temple Castillo and rises and joins forces with the sea and the sky. It’s not a coincidence I’ve discovered Tulum. In some ways, I think it’s part of my past, part of who I am, and who I hope to be.<PREVIEWEND> Like a small sapling, I gather strength and nourishment from the sun and the sea. I’m drawn like a magnet, and I come here every day, preferably alone. When I return home to our villa, Tulum dominates my dreams where I go in meditative prayer to sit on the edge of temple Castillo to watch the sea and fill my soul with rapture.

I remember the first time I saw Tulum. We battled the dense geography of a three-canopy jungle, enduring mosquitoes so thick they hovered in clouds around our eyes and ears and filled our nostrils with a buzzing sensation that felt like a mild electrical shock. We worked most of the morning, chopping and hacking our way through vines as big around as our waist. Soaked to the skin with the salty taste of sweat and an insect repellent that served little purpose, we would turn around to look at our progress, only to find the jungle had removed all signs of our passage. It was as though nature was reminding us of our insignificance: Mere mortals, here for a fraction of a millisecond of God’s time.

At some point, the jungle gave way to a series of small lagoons and meandering palm trees. A cool breeze began to dry our skin, leaving small crusty patches of salt on our arms and legs. And then there it was, perched on the edge of a cliff; a small Mayan temple, towering above the sparkling white beach and azure blue of the Caribbean. Like a small child runs to the outstretched arms of a loving parent, I ran toward Tulum, momentarily stopping to trace the carved relief images in the stone with my fingers. Then inexplicably, I was drawn to the top of the temple.

I watched a native emerge from the jungle. Barefoot and brown skinned, he climbed to the top with ease and grace, then sat down next to me on the ledge overlooking the sea. His eyes were yellowed and smiling, playful and wise, welcoming me like he would an old friend who'd returned from a long journey.

Pretending to strum a guitar, he softly hummed an exotic melody. "The Murder of the Jaguar," he called it. A two-headed serpent sat on the rocks next to us, its tongues darting in and out of twin throats, hissing in a syncopated rhythm with the native's song. Perhaps the serpent was a descendant of the feathered snake god, Quetzalcoatl. Perhaps it was there to remind us of the beauty of its Mayan ancestors and the power of Tulum.

Twenty years later, I sit on the edge of the same temple Castillo as a barracuda cruises back and forth in Sian Kaan, the ocean waters below. I say the name over and over in my mind like a mantra. “Sh’an Ka'an.” The place where the sky was born. Overhead, a bird lets out a startled human-like cry. “The invaders are coming.” Behind me, bus loads of pale-skinned tourists with disposable cameras and fanny packs approach like bargain hunters at a garage sale, and I am reminded of a Joni Mitchell song, "Find paradise. Put up a parking lot."

I watch as a man and woman walk past the painted frescoes on a nearby temple. They ignore the faded colors that depict Itzamná, the sky god, and the rain god, Chac, together with the moon, the stars and the fish below. As the couple moves on, bits of their conversation drifts upward on the wind.

"You think they sell margaritas here?" the man asks. He’s wearing a Dallas Cowboys cap and a New Zealand Hard Rock Cafe T-shirt.

"I don't know," the woman replies, "but I hope they have someplace I can buy one of those little ceramic frogs."

I watch them hurry past and wonder if they “appreciated” the beauty of New Zealand as much as they appear to appreciate Tulum. I’m sad and somewhat depressed by the changes since my first visit, and I wish the jungle would close in around me, leaving only me, Tulum and Sian Kaan.

Like a time traveler, I would gather the energy around me and become part of the painted histories of warriors and virgins, princes and priests. I would enter hidden rooms filled with cups of hammered gold and necklaces of jade and obsidian, then emerge into the sunlight and ascend upward from the sea like a giant bird in flight.

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Off to the Races!

Sunday, April 22, 2012

©Ramborella, LLC. All rights reserved.

Last week I shot the pilot for a national television talk show with me as the host, and I must say, it all went by in a blink. Months of work and planning were over in no time. My day began with an early hotel wake-up call and ended with removing my false eyelashes, then falling asleep seconds after I turned out the light. My friend, Celina, was worried I might have a “blue slump” when the big day was over, but there’s been no time for a letdown. As I told Celina, “I’ve bitten off something really big, and there’s no time to do anything but make this talk show a reality.”<PREVIEWEND>

Oh, how I wish I could tell you every detail, but we’re in a “blackout” period until the show’s “a go” or “no-go.” Either way, you can’t imagine what’s crammed into our relatively short timeline, a critical path designed to turn a pilot into a full-blown talk show. We’ve begun something akin to an Olympic track and field event. The starter pistol has already fired, and we’ve come out of the blocks as fast as our legs will take us. While we’re not on the course with other racers, we do have to achieve a winning criteria. Then, if it’s “a go,” like being flung from a sling shot, another frantic race will begin: researching shows, booking guests and developing interview questions; finding clothes to wear and shoes narrow enough to fit my skinny feet; filling the audience with lots of wonderful women and men and shooting back-to-back shows till our first season is taped, edited and “in the can.” If it’s a no-go, then I’ll smile and cherish this wonderful, crazy experience and know that I gave it my best. As winning Super Bowl coach, Mike Ditka, said, “Success isn’t permanent, and failure isn’t fatal.” Either way, I will be fine.

One of the things I can tell you is that from the moment Dr. Susan Love walked into the makeup room, everyone fell in love with her. Word she was on set spread like crazy, and the director and crew came to meet her. Quite simply, Susan Love is a phenomenon! She radiates openness, enthusiasm and a curiosity laced with intensity, excitement and more than a pinch of mischief. Even to the casual observer, it’s apparent Susan Love does everything with her entire being. She is the real deal!

When we’d finished taping her segment, Dr. Love was mobbed by women who had more questions for her or who wanted to have their picture taken with her. I finally had to have one of the production assistants rescue her and take her to a car, waiting to whisk her to the airport. I would walk across hot coals for Susan Love, and I owe her a debt of gratitude for coming to do this pilot. I’ve already heard from so many audience members; women who’ve told their friends what they learned from the show and have passed the website on and urged them to join. Others have sent word they’ve bought Dr. Love’s breast cancer and hormone books. This is so gratifying, because I consider myself a recruiter for the Army of Women. Regardless of whether you’ve had breast cancer or not, we’re looking for a million women to join, so Dr. Love’s research teams can find the cause of breast cancer and develop a preventative vaccine.

That’s about all I can tell you for now except, I did cry. As I was ending my interview with Dr. Love, I looked into the camera and said, “Wouldn’t it be wonderful if we were the ones who made it possible so that our granddaughters and their daughters never get breast cancer?” By the time I got to “our granddaughters,” my voiced cracked, big time, and I bit my lip and had to pause before I could continue. The thought of what those of us who’ve had breast cancer, our family and friends have been through, lodged in my throat like it was the sum total of all of our pain and heartache. The thought of the great women who’ve already died, and the ones who are fighting with all their might, hoping against hope to be one of the ones whose Stage IV responds to treatment was more than I could verbally articulate.

The good news about a pilot is that everyone learns a lot about what we need to do next time. If given a next time, I’ll keep a better eye on the makeup artist and stop her before she turns my eyebrows into Frida Kahlo lookalikes.

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Me, a Talk Show Host?

Sunday, April 15, 2012

©Ramobrella, LLC. All rights reserved.

Who would have ever thought I might have my own national TV talk show? Stranger things have happened... I believe little men with big heads from a galaxy far, far away, may have landed in the desert outside Roswell, New Mexico, and that Sasquatch, the furry ape-like creature with big feet may exist or, he’s just a hairy guy in desperate need of an understanding woman and a good body waxing. But me... a national talk show host?<PREVIEWEND>

While I can’t tell you about it, or even the name, I can say the focus is not breast cancer.
However, you can be assured that all things “breast cancer” will be discussed as frequently as possible. As a matter of fact, my first guest is Dr. Susan Love. Among other things, we’re going to talk about the difficulty in finding “the cure” and why she thinks the Army of Women have a better shot at preventing breast cancer from happening in the first place. We’re going to learn lots of new things about her as well, like did you know she speaks fluent Spanish, like it’s her native language? Actually, she does everything well, and she’s funny, and those are things I want people to know about her.

One of the reasons this opportunity has come my way is because of this blog and all of the conversations I’ve had with you. We talk about intimate, life and death issues, online and off, and we cheer each other on in good times and bad. You’ve been here for me since James died, and I can’t begin to tell you how much your support and friendship has strengthened me. You’ve prayed for me when I’m down--and when Goldie ate 20 square feet of lace--and you’ve allowed me to get to know you and for that, I’m grateful.

So, who knows if this talk show will actually make it on the air? A lot of things, I have no control over, have to happen. In many ways, the stars need to align before I have a close encounter of the television kind. Either way, the fact that I have a shot at something like this is remarkable, and I’m grateful and excited.

I’m not afraid to standup in front of people and speak, or be on camera, but in all of this, my biggest fear is that I will get emotional, over relatively nothing, cry on camera and look like an idiot. You, more than anyone, know how easily I cry at simple things like dog food commercials or the mere thought of what we, and our families, have been through with breast cancer. I’m told a certain vulnerability is appealing, but what if the powers that be say, “What kind of a nut job is she?” If asked that question, my response will be, “Just your average nut job, I guess.”

So dear ones, think of me this week, as I stand in front of a live studio audience. Once again, I will appreciate any prayers and hugs you send my way. I’ll keep you posted. Have a great week, and take care of yourselves....... I wish James were here to share this with me.... That made me cry.

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I've Aged Since James Died

Sunday, April 08, 2012

©Ramborella, LLC. All rights reserved.

The other day I caught a glimpse of myself in a restaurant mirror. For a split second I thought the woman staring back at me was my mother. I spent another split second hoping it was my mother, only to painfully acknowledge it was me. I was shocked to see how much I’ve aged since James died. I know what Nora Ephron meant in her book, I Feel Bad About My Neck, when she said her friends had begun dressing like “a white ladies’ version of the Joy Luck Club.” In addition to my neck, I need to add my jowls and my forehead to the list of visible body parts in need of camouflaging. It’s not like I haven’t planned for this day, when my face goes south, because I have.<PREVIEWEND>

When I was 21, I began buying expensive French skincare creams designed to ward off the aging process: a light moisturizer for day, something a little richer for night and an eye cream that had the texture of vanilla mousse. Since I had insanely youthful, flawless skin, I rationalized the expense by putting the creams in the same category as Social Security: Someday, when I reached a “certain age,” they would pay off.

By age 30, I started buying wide-brimmed Frank Olive and Patricia Underwood hats to protect my skin from the sun; hats that were so big, they needed their own airline ticket when I traveled. I remember a particular trip to Central America to dig for Mayan artifacts. The locals kept pointing to my head and smiling. I smiled back, thinking they were admiring my hat, until I saw my shadow on the ground and realized a bird had perched on my hat. While the bird may have decided she’d found a ready made straw nest, the locals probably thought I was a crazy lady with a satellite dish on her head.

Recently I saw Jane Fonda on television. She’s 73 and looks great, for any age. Ms. Fonda’s admission to having had plastic surgery made me think, yet again, about having a facelift. Ten years ago, I had an appointment with a well-known Beverly Hills plastic surgeon that had “done” a friend of mine. While I didn’t have anything done, his outer office was well worth the price of the consultation. It was lined with young women with gold fish lips and old women in wheelchairs, wearing their granddaughter’s face and short shorts. At the time, I didn’t really need anything done, but now I sympathize with their desire to turn back the clock.

How many of us haven’t thought about having a facelift, or a nip and tuck, more than once? Sometimes I see people who’ve had plastic surgery and who look like another species, or like they come from the planet Restylane. If I were to have plastic surgery, I’d want to look like my makeup artist friend, Sandy Linter, who, at 64, is achingly beautiful. I have the name of her plastic surgeon, but there's no guarantee I'd wind-up looking perfectly natural like she does. What if I didn't look like myself, or what if everyone said, "She's had work done, but it looks pretty good?" I don’t want to be a walking neon sign that screams "Plastic Surgery on Board" although I have had 10 breast surgeries because of breast cancer, but that's different. Sandy gave me some great advice, however. She said have the one thing that bothers you most fixed and live with it for a while, then decide if you want anything else done.

Since I was the last woman in her 50s to get her ears pierced, the odds of my getting anything “done” are slim to none. Besides, I first have to deal with whether to try Rogaine or not. Also, when people see me, if they notice that my eyes are crossed and my tongue juts out, they're probably not going to think about how much I've aged.

PS: I realize that talking about losing James and finding humor in my vanity may not go together, but I think James would say it's a good sign. That I have any humor at all after this last year is reaffirming that I'm finding my way without his physical presence. His love and his spirit will reside in me always.

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Neuropathy and Shopping for Shoes

Wednesday, March 28, 2012

The other day my friend and I went to one of those no-frills shoe stores. You know the kind, those warehouse-looking buildings that sell every shoe imaginable except the ones in your size. Rows and rows of sample shoes were displayed on tables that ran the length of the store, while all available sizes were stacked under the tables and generally consisted of two medium-size eights, one size 12 and five pairs of wide-sized twos. Since I wear a 9.5 shoe with a 6AAAAAA heel, and have neuropathy in my feet, nerve damage caused by chemotherapy, I was pretty sure this was not my kind of shoe store.<PREVIEWEND>

Against the far wall of this warehouse emporium were running shoes, walking shoes, sensible flats and open-toed sandals, while the middle of the store displayed stacked heels, high heels and spandex ankle boots with styles called Santa Fe and Sandstone, names probably chosen by the same people who name paint colors. On the other side of the store were fashion forward shoes with wireframe, six-inch heels that looked more like scale models of Lady Gaga’s outrageous piano shoe.

Since this was a no-frills store, and there were no mirrors, women were asking total strangers what they thought about the shoes they’d picked out. A woman with big hair and shaved eyebrows--I imagined she ran an establishment called “Ruby's Beer, Wine & Setups”--asked if I thought her shoes would "drive Wayne wild." I ask you... What can you say to a sixty-five-year-old woman with hair the color of overripe mangos, who’s wearing clear, plastic Cinderella want-a-be's? Then there was the portly woman who found a pair of “breed-me, don't feed-me” shoes and who asked if I thought pink and gold snakeskin would go with white stretch pants?

I realize drag queen/pole dancer/platform stilettos are--pardon the pun--the height of fashion, but let’s get real, girfriends: How many of you actually own a pair of these stratosphere stilts, and if you do, when’s the last time you fell off your shoes? Don’t get me wrong, I love beautiful high heels, but my chemo-damaged, neuropathy-ridden feet can’t tolerate most heels for more than a walk to the car and back before the balls of my feet are in agony.

For those of you who don’t know, neuropathy is the medical term for painful nerve damage, usually to the peripheral nerves in hands and feet, caused by chemotherapy, radiation, excessive alcohol, diabetes, kidney problems or poor nutrition. While there are several studies on preventing neuropathy caused by chemo, none appear to be “the” solution, however there has been some success with the drug, Amifostine (Ethyol), as well as calcium and magnesium given before chemo begins. If you already have neuropathy from chemo, you might try soaking your hands and feet in cold tap water. DO NOT USE ICE WATER. As always, ask your oncologist what he or she suggests. Unfortunately, after neuropathy starts, many women are forced to stop treatment because the pain and/or numbness is so intense. The good news is that for most of us, neuropathy gradually gets better after treatment stops, although in my case, some residual symptoms seem to be permanent.

As the number of aging Baby Boomers continues to increase, millions more women will be diagnosed with breast cancer and chemo-related neuropathy, not to mention that we lose the fat pads on the bottom of our feet as we age. If only shoe manufacturers would realize there’s millions of women who need shoes other than ones that appeal to Snooki! So, all of you shoe designers, how about making stylish, comfortable shoes that don’t look like “Janet Reno does the lobby of the MGM Grand?”

PS: I love the comment said about the above photograph, “What’s more frightening: a purple dog or a pregnant Snooki in six inch heels?”

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The Healing Power of Music

Sunday, March 18, 2012

The other night I watched a rerun of Diane Sawyer’s interview with former US Congresswoman, Gabby Giffords, and her astronaut husband, Mark Kelley. The interview was the first time the public had seen Giffords since she’d been shot in the head at point blank range. Watching her radiant easy smile, I realized her healing journey has been nothing short of miraculous. Near death when she arrived at the hospital, Gabby Giffords suffered a major brain injury that necessitated temporary removal of a piece of her skull. The injury also forced her to learn to talk, walk, read and reason all over again, and surprisingly, the tool her therapists found to be most helpful was music.<PREVIEWEND>

According to scientists, nothing activates the brain like music, especially in the case of severe brain injuries like Gabby Giffords. Music has a unique multi-dimensional power to change the way our brain strings words together; it helps us learn to walk again, and it increases the dopamine levels that produce a positive affect on our sense of well-being.

Sometime last Fall, I remember singing along to Cyndi Lauper’s Girls Just Want to Have Fun on my car radio. At first my voice was tentative and soft, but it wasn’t long before I was singing with everything I had, and in that moment, I forgot James died. I forgot that most every area of my life was drenched in grief and betrayal, and in that moment, I wasn’t a widow or a breast cancer survivor, I was my usual happy upbeat self. Amazed at my happy outburst, I remember thinking that on some level, my healing had begun.

For many of us, healing is an ongoing process. Whether it’s physical or emotional, cancer, betrayal or grief, the torn and fractured pieces of our mind and body continue to knit themselves together, again. We gain strength and draw comfort from the prayers of those around us, the compassion of our medical team and from the examples of those who’ve gone before us like Gabby Giffords and Mark Kelley. Gabby and Mark underscore what many of us already know: When the life we planned is not the life we’re living, we must dig deep and summon the courage and determination to map out a new life.

In Diane Sawyer’s interview, Gabby Giffords and her therapists sang Girls Just Want to Have Fun, and in that moment, Gabby was radiant and whole. It made me think back to that day in my car when I sang the same song with joy and abandonment; how the healing power of that happy song lifted me out of my grief.

Music makes new pathways in the areas of the brain that control memory, emotion, even movement. Our body naturally wants to align itself with the rhythms of our environment. What rhythms are part of your environment? Are they the stories on the news about murders and robberies or, like Gabby Giffords, do you surround yourself with music and examples of courage and survivorship?

If you can’t remember the last time you sang at the top of your voice then it’s been too long, my friends. Like Gabby Giffords, we may be beaten up around the edges, but we’re not beaten.

Sing, dear ones, and heal well!

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What Are Breast Cancer Previvors?

Sunday, March 04, 2012

After testing positive for the hereditary BRCA2 breast cancer gene, Marion, one of my readers, recently made the brave decision to voluntarily remove both of her healthy breasts in an attempt to prevent breast cancer. When she subsequently contacted the American Cancer Society (ACS) about mastectomy/breast cancer support groups, they told her that since she wasn’t a breast cancer survivor, she wasn’t eligible to attend their groups. Needless to say, she was disappointed and outraged. As she put it, it’s almost “like the ACS thinks I had my breasts removed as a fashion statement!” While I wish the ACS had been more helpful and compassionate, I can suggest a great website, FacingOurRiskOfCancerEmpowered (FORCE), which which refers to women like Marion as previvors.<PREVIEWEND>

Previvors are survivors of a predisposition to cancer. Previvors have their own needs and concerns separate from those who’ve already been diagnosed with breast cancer. In fact, September 29 is Previvor Day and recognizes the unique challenges faced by those at high risk for cancer. Before any of you become overly concerned, over 90% of cancers are not caused by inherited genes, and not everyone who carries inherited cancer genes will get cancer. However, if you discover you carry one of the BRCA breast cancer genes, how far would you go to prevent the disease itself?

Since some inherited genes are also related to ovarian cancer, in addition to having a prophylactic double mastectomy, would you voluntarily elect to have an oophorectomy (removal of the ovaries) or a complete hysterectomy? Not surprisingly, many previvors are young women of child bearing age who face tremendously difficult reproductive decisions. It’s important to remember that none of these “risk-management” procedures eliminate all cancer risks, plus it’s of paramount importance you consult with an expert in hereditary cancers and risk assessment.

I didn’t discover I carried the BRCA2 gene until four years after my diagnosis, original mastectomy and six rounds of chemo. I also went against my oncologist’s recommendation that I not be tested for the BRCA genes because there was no history of breast or ovarian cancer in my family, plus he discouraged me because the test was expensive. Since my “little voice” has never let me down, I followed my instincts and was tested. When I learned I was BRCA2 positive, I didn’t spend much time wondering why I had the gene or which side of the family it came from. Instead, because there was an 87% chance I’d get breast cancer in my “good” breast, I had a prophylactic mastectomy two weeks later. Because one breast was reconstructed with a DIEP Flap procedure and the other has a silicone gel, my breasts are a bit mismatched, but I’ve never looked back or second guessed my decision.

If you or a loved one has been found to have a hereditary breast or ovarian cancer gene, or you’re a health care provider who treats high-risk patients, you might consider attending FORCE’s 2012 Conference this October 18-20, 2012 in Orlando, Florida. The conference features general sessions and workshops conducted by leading BRCA and hereditary cancer researchers, and it gives previvors the opportunity to meet and share their experiences with other previvors.

Yes, Marion, “you are accepted here,” because there are many ways we are survivors. I hope this has been of help to you.

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Stories We Tell Ourselves

Sunday, February 26, 2012

©Survivorship Media Network, LLC  All rights reserved.

Regardless of where we are in life or, what we do for a living, we each have our own stories that have played in our heads since childhood. I’m not talking about fairy tales and fantasies, but our versions of our own lives. In some ways, we make sense of ourselves and our lives by the stories we tell others about ourselves. This is a recent photo of my mother, an unhappy woman who’s always painted herself as the victim. If mother has a choice between “I’ll give it a try” or “I can’t do that,” she’s always chosen the one that leaves her the most pitiful. Mother doesn’t know it, but her stories have played a huge role in the stories I’ve told myself and the woman I am.<PREVIEWEND>

One of my earliest stories was that I was an overprotected only child,
raised by an unloving strict father and a mother who tried to keep me wrapped in swaddling clothes until I was old enough to collect Social Security. As I got older, I told myself new stories like I was a daredevil who wasn't afraid to do anything. Even in the early days of living my new story, I was aware that my somewhat blind disregard for my own personal safety was a facade, designed to make me the polar opposite of my mother.

Almost immediately, my wanna’ be tough girl story became a self-fulfilling prophesy. My determination to tough-girl my way through any situation was also the same bravado that saved me from succumbing, numerous times, to things I shouldn't have done in the first place. When I escaped from my ordeal in Honduras, my brave, keep-on-going girl kept me from telling anyone what really happened to me there. I had become the antithesis of my mother and the overprotected girl who wasn't allowed to go barefoot. I could go to Hell and back and keep on going. I now know the stories we tell ourselves can be our saving grace or our own worst enemy. Either way, we sometimes need help processing them and crafting new ones.

The last year has been the worst year of my life, full of grief, heartbreak, betrayal, financial terror and depression. You might think the story I now tell myself is one of woe, my life will never be the same, but you'd be wrong. I may be embarking on one of the most exciting chapters of my life, one that will use all of the experiences, hard knocks, survivorship skills, love and the grace of God I've learned, earned, endured and been given, but if it doesn't materialize, I know I'll be OK.

What are the stories, the inner dialog  you tell yourself that have shaped your life? Perhaps they served you well in the past, but now it’s time to let them go. Or like my mother, do you tell yourself “you can’t” or “you’re afraid?” What’s stopping you from writing a new story? Where do you see yourself a year or 10 years from now, and what kind of inner story will it take to get there? If you're struggling with cancer treatment or maybe your prognosis, what are you telling yourself day after day, and is it helping or hindering?  Do you need help writing a new story and if so, who will you turn to?

Writing this piece has made me wonder where our stories stop and our identity begins, or are our identities more than just a story we tell ourselves?

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Join the Army of Women

Sunday, February 19, 2012

Like my friend and fellow breast cancer blogger, AnneMarie at Chemobrain...In the Fog, I am a fan of Dr. Susan Love, breast surgeon, author of “the” bible on breast cancer, frequent medical contributor to NBC News and president of the Dr. Susan Love Research Foundation. Dr. Love’s foundation is working to eradicate breast cancer and improve the quality of women's health through innovative research, education and advocacy. In addition, her foundation joined forces with the Avon Foundation to form the Love/Avon Army of Women to discover ways to prevent breast cancer. As Dr. Love said in her recent New York Times essay, the “real race in cancer is finding the cause.”<PREVIEWEND>

Because it’s harder to find women to study, researchers use mice, but as Dr. Love told me over lunch recently, “mice don’t get breast cancer.” Therefore, Love has created an innovative research initiative designed to recruit real women of every age, ethnicity and breast cancer risk to participate in a wide array of clinical studies. In effect, the Army of Women gives all women, with or without breast cancer, the opportunity to partner with researchers and take breast cancer awareness beyond a cure to prevention.

Some of the Army of Women’s current research studies include:
• Developing an inexpensive and easy to use band-aid-like test strip that can assess whether a premenopausal woman is at risk to develop breast cancer
• Low-dose anti-estrogens & Omega-3 fatty acids to prevent hormone-independent breast cancer
• Using specially trained dogs and a chemical test on exhaled breath markers for early detection of epithelial ovarian cancer
• How bacteria in the intestines metabolize estrogen & other female hormones
• To see if there are differences in breast cells found in the breast milk of healthy women & those who have cancer
• Whether wake/sleep cycle disruptions in women who work the night shift may increase their breast cancer risk

Another Army of Women study is trying to determine whether DNA cell damage in normal breast tissue could be an indicator of future breast cancer risk. Initially, researchers at MD Anderson recruited women with benign breast biopsies who went on to develop breast cancer. Now they are looking for women who had benign biopsies but did not develop breast cancer. By studying both categories of women, scientists are looking for markers in breast cells that may be indicators of future breast cancers.

Researchers aided by women, not mice, are a powerful combination.
We already know what happened when researchers, with the help of women, focused on the cause of cervical cancer. Thirty years ago, women were given hysterectomies after a single abnormal Pap smear, but now our daughters have the opportunity to be vaccinated against cervical cancer. Once again, we have the opportunity to make a full-scale invasion on another cancer that kills women.

Please join me and the other 360,000 plus women who’ve already become a member of the Army of Women. Whether it’s your book club, Bible study group, sorority, friends and family or the women in your office, forward this blog to ALL of the women in your life, whether they’ve had breast cancer or not, and urge them to sign up.

If you’re a cancer researcher, tell your colleagues, medical professional associations and include in your newsletters that researchers can submit a research proposal to the Army of Women.

If you’re an individual or a corporation and the Komen controversies have left you jaded about raising and donating money to breast cancer research, you might consider donating to the Dr. Susan Love Research Foundation. The Army of Women needs ALL of us to fund the search for the cause and prevention of breast cancer.

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