Monday, January 31, 2011

That Was Then, This Is Now: The Army Ending Breast Cancer

Back in the 50's, breast cancer was a taboo topic. Women that were diagnosed felt obliged to keep the diagnosis hush-hush, it was spoken of only in whispers and shrouded in fear. Radical surgeries, highly toxic treatments, and social stigma left women that were diagnosed devastated by the disease. The 60's and 70’s saw some improvement to this, as stories of survival gained public attention, women’s health initiatives grew, and the American Cancer Society stepped up its communications efforts. The 80's brought the onset of the "breast cancer awareness" movement, a result of growing disease incidence and news media propagation. Emotionally evocative breast cancer stories filled media air time and made the cover of prominent magazines.


No doubt about it, the evolution of breast cancer consciousness is responsible for reducing breast cancer deaths. As the subject became more "normalized" and less taboo, pro-health communications campaigns circulated. The disease went from something never spoken of to something discussed in nearly any social circumstance. The message of "early detection" found its way to more and more women, resulting in more cancers identified during early treatable stages. With cancers identified sooner, the survival rate increased. Early breast cancer benevolent groups were effective in saving thousands of lives.

Awareness walks emerged, effectively serving the dual purpose of visually reminding the public of the breast cancer epidemic and bringing participants together in productive collaborations. The “charity walk” paradigm spread, with well meaning walker/fundraisers now having to choose one beneficiary alliance over another. Two day walks, three day walks, relay walks, regional walks...the field of breast cancer walks and coalitions grew. While raising money for the cause, participants in these humanitarian walk efforts gained real benefits of increased self-esteem, social/emotional networking, and empowerment. Before long, hospitals began sponsoring their own breast cancer "awareness raising" events which, not just by coincidence, reflected positively on their marketing agendas.

As the movement twisted, turned and wove a complex web, corporate America jumped onboard, its marketing gurus seeing the potential of “cause association” advertising. The pink ribbon, inspired by the success of the AIDS awareness ribbon, became associated with the breast cancer cause. Beginning in the early 1990’s, breast cancer charities, in their zeal to collect as much money as possible, began partnering with profit-driven entities for whom "altruism" ranked 2nd to "product promotion". As evidence of its potential economic collateral mounted, charitable organizations like Komen sought registered trademarks in the use of the iconic pink ribbon symbol. Promising varying percentages of product profits, corporations inked the evocative pink ribbon on everything from soup cans to pot scrubbers, lest there be any question of their stance "for the cure" (as opposed to "against the cure"?). Competitive Corporate America, driven to distinguish brands and products, jumped by the hundreds into the sacks of bloated breast cancer non-profits. The proliferation of the ubiquitous breast cancer "pink ribbon" began to actually mimic cancer, spreading to a point of phenomenal "pink noise". Cause-related marketing spread like an uncontrolled disease. The pink ink syndrome occurred particularly during October, which was deemed Breast Cancer Awareness month. (Folks, I assure you that breast cancer is a year round disease). Discriminating companies, those supporting the most effective breast cancer organizations, have truly made a remarkable impact in saving lives from the grips of breast cancer. However, some of the tremendous earlier efforts to reduce fear have become eroded by the overwhelming use of the pink ribbon on consumer products. For many, particularly those directly impacted by breast cancer, the repetitive visual reminder is not unlike the incessant “nevermore” reiterations of Poe’s Raven.

That was then, this is now. From its beginnings in the mid-twentieth century to the pink ribbon period, the “awareness” and “commercialization” chapters of breast cancer are waning. A new and exciting chapter in the fight against breast cancer is commencing, one that will not only eradicate breast cancer, but will also shed light on stopping cancers of all types. This final chapter is focused on stopping breast cancer before it starts. It requires targeted, collaborative, and concerted research partnerships. And, this cancer prevention research, in order to be truly fruitful and expeditious, requires scientifically significant study enrollment.

So, back to the grass roots that got us this far. Just as Dr Susan Love and other grandmothers of the breast cancer movement effectively engaged humanity in life-saving breast cancer awareness, the time has arrived for women and men to become engaged in research that will prevent the disease from occurring all together.

Wise organization like the National Breast Cancer Coalition, the Avon Breast Cancer Foundation, and the Army of Women are leading the way, calling for an end to breast cancer by 2020. So far, half a million ordinary people have committed to the solution, ready to write the next chapter against breast cancer. The Army of Women research database, and the technology that enables it, are the wave of the future. This time, the grass roots span the entire global community. Any individual, anywhere in the world that has internet access, can act to be part of the solution by simply allowing researchers to study their lifestyles and health. It’s about significant research acceleration enabled by the participation of ordinary people. This new chapter of the breast cancer legacy will take the ribbon that was once used to symbolize breast cancer and use it to tie the disease up – forever. Join the Avon/Love Army of Women today at www.armyofwomen.org and be part of the countdown to the end of breast cancer.

Monday, November 1, 2010

Fields of Hope ArtWear

 
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"Fields of Hope" ArtWear Aids Women Beyond Breast Cancer

Across the globe, over a MILLION women and men are diagnosed with breast cancer each year. But, what happens after the words "You have breast cancer" are heard? While earlier diagnosis, better understandings of breast cancer sub-types, and improved treatments are allowing more to survive the disease, many fail to truly thrive after breast cancer. Why?

I have spent the past several years trying to understand this, during which I have personally counseled dozens of women and men dealing with breast cancer, attended numerous breast cancer patient events, and ruminated on the topic, sometimes late into the night. For too many, most in fact, the fear, anxiety, and depression that follow a breast cancer diagnosis can dramatically reduce quality of life and negatively impact work and relationships. It is my belief that survivors, whether they are actually pre-vivors with genetic risk indicators, or whether they are survivors of advanced breast cancer, can suffer from a sort of "post-traumatic stress." In terms of living beyond breast cancer, this can be truly debilitating. Think about it. You've been diagnosed with a disease that threatens to a) take your life, and b) possibly recur after treatment ends. Most that are diagnosed are not naturally equipped with the coping skills necessary to minimize post-cancer anxiety to a point necessary to entirely "resume" their pre-cancer lives. I am one of the lucky ones. I have a terrific family support system. Activities like art and music, yoga, walking, friendship, and activism have enabled me to move past two bouts of breast cancer. The grey cloud of breast cancer recurrence anxiety very rarely blocks the sun from me now. (My breast reconstruction also helped me feel normal again.) Yoga sessions offered at my cancer clinic helped me turn the page after my treatments ended, and for that I am very grateful.

I know first hand that not all are so fortunate. This is where I want to really make a difference - helping others to "break out" of cancer's emotional/psychological hold, and live out the best lives they can. One giant aspect of recovery - the psychological, emotional, and social dynamic - is still somewhat of a "black hole" in cancer care. Yet, this aspect is absolutely vital to holistic recovery. Thanks to the Avon Breast Cancer Foundation, The Avon/Love Army of Women is beginning to facilitate measurable research studies on the topic of psycho-social wellness after breast cancer and its impact on post-cancer health. (see: www.armyofwomen.org) So many women I have had the honor to counsel report feeling depressed and scared after cancer, but are uncomfortable with traditional support group settings. Often, they truly want to do more to recover, but are so financially beaten by cancer tretament costs that signing up for a yoga class just isn't possible. (To this I can personnaly relate.) So, what to do?

I believe the answer lies in offering women opportunities for emotional and psychological recovery through shared activities, learning new skills/hobbies, a chance to talk with other survivors during creative workshops, yoga, "art therapy" sessions. In my opinion, this should be an integral part of treatment! The most progressive cancer clinics are beginning to offer emotional wellness programs as part of their wellness care. It just plain makes sense, even economically, Happier women are more productive women in every way. To survive breast cancer is great, but to THRIVE after breast cancer - AMAZING!!

To that end, my team and I have begun offering "Fields of Hope" ArtWear. "Fields of Hope" shirts are printed with earth-friendly inks on organic cotton, and the fine art images are all about empowering survivors. Funds from this project will sponsor opportunities for women to actively engage in their own psycho/social and emotional recovery BEYOND breast cancer, bringing together people from different "fields" (artists, wellness, yoga, counseling, etc.) that may offer therapeutic hope and recovery to breast cancer survivors. The fundraising ArtWear, designed and signed by acclaimed artist Ken Maryanski, is available at FRINGE Boutique in New Hampshire (also on FaceBook), and by order (email: bcfieldsofhope@gmail.com).

A journey of a thousand miles begins with one step. There is much that can be done to help others step forward into optimal wellness after breast cancer.

Thursday, June 10, 2010

The Importance of Breast Reconstruction After Mastectomies

My name is Donna Bramante InDelicato. I am a mother, a wife, a daughter and friend, a communications professional. I hail from the small town of Windham, New Hampshire. I am compelled to share my story of hope. What I have to share is big. It’s about women’s welfare.

Gentlemen and ladies…when I tell you I am thrilled to be here…. I mean that quite literally. You see, I am two-time breast cancer survivor.


I am ONE woman.. in a sea of MILLIONS.

THIS VERY DAY, 3780 women all over the world will hear the dreaded words, “You have breast cancer.” That’s about 25,000 EVERY SINGLE WEEK!!!! For many of you reading this, breast cancer is, or will be, personal.

My story is one of MILLIONS.. a narrative of epic battles and incremental steps forward, a roundabout journey from which I am finally home. Two winters ago, I closed what I hope will be the final chapter of my breast cancer story. My cancer has been in remission for seven years, and all that cancer took away from me has been restored and more.

Nine years ago, at just 34 years old, a diagnosis of cancer was the last thing I ever expected. Not a single person in my extended European (Italian-Polish-Danish) family had ever had cancer. My cancer adventure began in the office of my gynecologist, where a clinical exam confirmed a palpable breast lump. I was granted passage to a breast surgeon’s office, where ultrasound and a biopsy led to my diagnosis: early stage breast cancer. Shared tears, a stiff brandy, several sleepless nights, and a partial mastectomy later, my family and I believed our breast cancer episode was done (whew!). But, that was not to be…..

Four years later, while breastfeeding my darling daughter, I felt a lump. An eternal optimist, I brushed this off, thinking it was due to lactation. What I assumed was “nothing” turned out to be a serious malignacy – invasive, triple negative breast cancer, infiltrating out of my breast to several lymph nodes. This diagnosis was tough on me, but even tougher on all the people that love me, who helplessly stood by, masking their fears.

Life can change pretty quickly, I learned. I was swept up in a rip tide of activity threatening to pull me under. The first order of business was to get the cancerous cells out of my body with the removal of both my breasts. In a matter of weeks I was reduced from a vibrant, active entrepreneur and busy mother of two to a bald and sickly “two-dimensional woman-boy”. I needed an arsenal of treatments to survive, and was subsequently infused with chemotherapy and zapped with radiation. I lost my long hair, and felt totally diminished.

“This difficult time will pass”, my beloved oncologist said, and indeed it did.

But the consequence that remained with me, and pervasively affected my life, was the amputation of my breasts - a deformity I lived with for 4 ½ prime years of my life.

Although breast cancer caused a torrent of challenges for me and my family, I never, ever, allowed it to drown me. I thanked heaven for so many valuable lifesavers – my family and friends, wonderful nurses, and a team of terrific doctors. My crazy sense of humor helped me fight my way to the surface when cancer dragged me down. Oh, yes. I was the crazy chemo patient spicing up the infusion room with silly costumes ! Imagine a witch, a cowgirl, and a “pink punk rocker” tethered to an i.v.. At times, “coping” involved intentionally flipping my wig for a reaction. Once, I faked a call from the Olympic Bobsledding Team soliciting my flat, aerodynamic body. Actually, I did notice some improvement to my golf swing and my archery without womanly “impediments”!! My violin, however, had no place to rest. My jokes about being breastless got me and my family through some pretty dark days. Every time my loved ones looked at me, however, they were, on an emotional level, reminded of my serious illness.

I tried wearing prosthetics, but found them to be uncomfortable and silly. They made me feel like a guy in drag. One UFO incident in the swimming pool (unidentified floating object) was enough for me to put my foamy fake friends away in a drawer forever. I returned to my fitted clothing, and got used to the sideways glances from strangers. I imagined them thinking, “I’ve seen FLAT, but that woman is CONCAVE!” Others assumed I was anorexic; my lack of breasts made me appear super thin. With no breast fold to hold bathing suit tops from riding up, bikini beach volleyball was definitely crossed off my list. I resorted to pathetic little-girl styles.

Well, determination and humor only get you so far. For years, my chest concavity and surgical scars caused much deeper emotional ones. The truth is, this loss doesn’t just physically degrade a woman, it erodes her self-confidence, and takes away an innately primal aspect of the female identity. (Perhaps the men reading this will ponder what a comparable physical loss could mean in terms of one’s masculinity.)

Words cannot convey how much I missed my breasts – the way they made my clothing look, the role they played in my sexuality, the comfort they offered my young children as they cuddled on my lap. My reduced confidence impacted my professional productivity as well. My deformity, a visible symbol of my cancer, diminished my family’s faith in my long-term wellness. The sympathy it elicited from others affected my social life and shaded my friendships. What I saw in the mirror clouded the quality of my life, and prevented me from mentally moving BEYOND my cancer. After a while, I just stopped looking in the mirror, stopped wearing stylish clothes made for normal women’s bodies, and ceased enjoying my sexuality. Subconsciously, I became rather depressed.

Several times over those breast-less years, I visited plastic surgeons desperately seeking the possibility of breast reconstruction. Each time I was told that restoration was not possible – the mastectomy tissue removal had been extremely aggressive, life-saving radiation treatments had badly damaged the tissue remaining, and I was thin. I gave up hope that I would ever be whole again. My wish was modest – just a normal “bump” would do. The idea of “transferring” tissue and muscle from other parts of my precious body, even if this were possible for me, was quite unappealing.

OK. Enough with the pity! Now comes the good part of my story!! Now I get to tell you how the sun returned in my sky and the color back in my life! Thanks to LifeCell Tissue Matrix and silicone implants I became whole again, and even greater than the sum of my parts. THIS is the happy ending, and new beginning, that ALL women facing cancer should have the right to choose.

How did I learn about this procedure? A chance meeting in my daughter’s ballet class waiting room opened the door to the beginning of the rest of my life. A fellow “ballet mom” gave me the business card of the brilliant and compassionate Dr. Karl Breuing, plastic surgeon. Fall of 2007, I decided to investigate breast restoration one last time, and am I glad I did! A few months later, I became the recipient of two incredibly restored breasts constructed with AlloDerm (acellular donor tissue matrix), my body’s own natural regenerative process, and cohesive gel implants! I learned that the use of this tissue supplement in my reconstruction helped provide adequate interior space, mechanical support, and a sub-dermal barrier enabling anatomic breast implants to be permanently positioned in place. I was able to emerge from a single breast reconstructive surgery entirely and permanently restored! When I woke up from surgery and looked down at familiar shapely mounds, rivers of joy trickled down my face. I wanted to leap out of bed, do my “BellaDonna” dance, and hug everyone in sight!

In retrospect, I never consciously acknowledged how the loss of my breasts affected my psychological wellness, and the energy my sadness drained from me, until I got that vitality back. I left my depression and anxiety in the operating room of Faulkner Hospital in Boston!. Adios! Thanks to LifeCell Tissue Matrix , I’ve truly and totally recovered - with a tremendous sense of hope, self confidence, and purpose. This reconstruction allowed me to move entirely past my breast cancer bout.

My girlfriends would tell you “Donna’s got her mojo back”! My little daughter proclaims, “Wow mom! You look like my Barbie dolls now!” and “You look just like all the other moms.” My 14-year-old son, the topic of “breasts” evoking, um, mixed emotions, tells me he’s “happy for me” and picks up on my improved mood. My children are happily thriving, my cancer to them is now a fading memory. My parents are just plain relieved.

How is my life after reconstruction? FANTASTIC! I can wear any style of clothing again! Even strapless! I can tell you (and my husband would agree) “It’s good to feel sexy again!” Breasts play an important role in intimate satisfaction for both partners. It’s all quite natural. To summarize, “I’m much happier now!”

My cancer taught me so much. I have re-organized my priorities, and utilize my communications skills now for the welfare of others. For better or worse, Life sometimes hands out sour lemons. I am busy now making and sharing lots of lemonade!!! Incidentally, the lemons image shown here is utilized by the UK’s “Lemonland” breast cancer support website, devoted to global breast cancer education. The caption reads “have you squeezed you lemons lately?”


Anyway, It’s not what happens to you in life that matters, it’s what YOU DO with it!! Cancer has given me the opportunity to take stock of my life and purpose, to live more deeply engaged. Each of us CAN make a difference. My involvement with the breast cancer community runs deep, so I’ve had the privilege of sharing lots of dialogue with thousands of others. Through various aspects of advocacy work I’ve touched, benefited and learned from a wonderful cohort, tens of thousands of breast cancer sisters. I have walked women through the process to recovery hand-in-hand, spoken at public forums, and allowed the news media to publicly share my story of hope. I have become inspired to great activism, leading “Team BellaDonna” in raising $250,000 for the international Avon Breast Cancer Foundation. I will not stop until I know that all women everywhere know about this type of reconstruction. It has been over 8 years since it was first pioneered; the time is long overdue for this information to become public knowledge.

What do I want women to know? LifeCell Tissue Matrix allows individual women and their care teams to address dynamic treatment considerations. It makes reconstruction predictable, adjustable, adaptable, and available for all women. Many women can now have breast reconstruction in a single procedure. It allows women to preserve the rest of their bodies. And, the cosmetic results are great!

All women deserve the chance to make smart and healthy choices, choices that appropriately balance wellness benefits with compromise. For me, it’s not just about improving lives like mine; it’s about potentially preventing deaths. We all have a responsibility, a stake in that. Sharing the possibilities of breast reconstruction affords so many women diagnosed with breast cancer, AND those at identified risk of developing the disease, the chance to make life preserving choices. Informed, empowered women make better wellness choices.

I’d like to convey the appreciation of my family, friends and millions of breast cancer sisters. The biomedical scientists and professionals making tissue repair products possible, and my reconstruction possible, are leading the way towards healthier futures for so many. The biologics frontier is just beginning to open up. Let us hope these fields continue to get the support they need to take medicine and wound care into the 21st century and beyond.

For more information on LifeCell Tissue Matrix and Breast Reconstruction visit: www.breastreconstructionmatters.com, The American Cancer Society, and The American Society of Plastic Surgeons.

Wednesday, May 26, 2010

 
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Crayons and Tears: My Breast Cancer Diagnosis

I shall never forget the heavy and humorous circumstances surrounding my second, and hopefully final breast cancer diagnosis.

On a beutiful day in May of 2003, I drove with my precocious 1-year-old daughter to the office of Breast Surgeon Dr. Yvedt Matory at Brigham and Women's Hospital in Boston. A few weeks prior, I had undergone an excisional breast biopsy of a suspicious mass. Despite having had early breast cancer removed from the same breast just 4 years prior, I approached this appointment with confidence. I'd had two other breast lumps biopsied in the two years prior, both of which had been benign (non-cancerous), and expected this news to be the same. So, when both my husband and mom offered to come with me to this spring 2003 appointment, at which I was to have the biopsy incision checked and receive pathology results, I incessantly declined their offers. "I'll be fine!" I very stubbornly insisted. I suppose, in hindsight, I had taken my optimism a bit too far.

The long drive into Boston for that appointment was lovely. I remember it well. My toddler daughter Victoria and I sang nursery rhymes along the ride. Having had very early breast cancer 4 years before and, therefore, being at elevated risk, I truly treasured and celebrated out loud the fleeting, rhyme-singing days of motherhood. Victoria was (and remains) innately musical/artistic. We arrived on time, but, as usual, were stuck in a crowded waiting room for over an hour. Still, my cherub sang on, much to the delight (for some, annoyance) of our fellow "waiters".

I (we) were finally called in to the exam room, with its sterile aroma, crinkly exam-room tissue, single magazine, and muffled calcaphony of bustle and voices. We were way past nap time now, my cheerful toddler growing restless in the confines of the blank blah-beige walls. Ahh..those blank walls. We were two minds with nothing to occupy us while waiting for the familiar chart retreival from the door bin, click of the door handle, and appearance of our beloved Dr. Matory. My toddler wriggled in my lap, bored of the magazine we looked at, and getting generally "antsy". I recalled the crayons and paper I had in my mom-bag-o-tricks. Thank you Crayola! My little Picasso got earnestly to work.

I have a way with people, tending to easily establish meaningful connections. Such was the case with Dr. Matory; we shared an interest in music, education, patient communications, and had children of similar ages. (Dr. Yvedt Matory has since sadly passed away, a young victim of skin cancer). Despite having a ridiculous overload of patients, as is the case for surgeons at most of Boston's teaching hospitals, I do believe that she had a particular love for me. In the years ensuing my first cancer, what I perceived as Dr. Matory's personal interest in my well-being inspired my faith and helped allay my cancer recurrence fears.

As Dr. Matory entered the door that fateful day, her demeanor was different than what I had ever before experienced. Strained emotion showed on her cocoa colored face, and a serious furrow appeared between her beautiful deep brown eyes. "Hello Donna," she said. Hmm. No gregarious smile? No quick interest in the progress of my adorable attention-craving baby girl? "She looks really tired," I recall thinking about Dr. Matory. In the years since I had been seeing her for cancer follow-up appointments, every 3-6 months, she had shared with me the difficulties of finding balance - being a top surgeon, and being a commited, involved mom. Tired. Yes, that's why the long face. She's tired. "We have some things to talk about," were her next words.

So, I pulled up a chair next to her, as we reviewed the biopsy results. Me with a polite smile on my face, legs crossed, sitting up straight, listening intently. What followed was a bit of a teacher-from-Charlie-Brown experience, with just random words bouncing around in the frozen parts of my brain. "We found more cancer....waaaa.waaaa.waaaa." "Invasive, aggressive.....waaa...waaaa" "Mastectomies...waaaaa..chemo...waaaa...radiation...waa,waa,waa,waaaaaaaa." And still, I smiled politely, nodded, cheerfully agreed to make the necessary appointments with the secretary for more surgery and medical consults, etc. "Wow, you are handling this very well!" Dr. Matory added. More polite smiles.

I was not truly able to process what I was hearing. By that point she may as well have been speaking to an alien going through programmed responses, but not really emoting. I was like "Data" from Star Trek. My intellegent, multi-dimensional neural network suffered complete gridlock. Only one brain path stayed open for processing; the one that deals with just basic functioning and survival. It was all so surreal.

And then something happened that I will never forget. We both turned around, Dr. Matory and I. Those boring walls? The ones that drive patients crazy with their blankness? Well, my 18-month-old Picasso had found a perfect canvas, and outlet for her boredom!! The walls now featured my daughter's first-ever "public showing" of her budding artisitc talent! God works in some very strange ways indeed. No more boring walls, a distraction for both physician and patient, a happy toddler, and a well-timed moment of comic relief shared by two working moms - all provided at once by my darling daughter in my moment of need. "Oh my!" I exclaimed with raised eyebrows. "Don't worry about it," said Dr. Matory as we smiled at eachother.

What happened next? I remember making some appointments, leaving the hospital, securing Victoria in her car seat (where she promptly fell asleep), and driving down Memorial Drive, along Boston's Charles River, bound for home. At some point, the neurons were released from their bondage, my brain turned back on, and....the dam of emotions broke. About mid-way down Memorial Drive, I started sobbing like I have never sobbed before. I realized the impact all this would have on my husband, 6-year-old son, mom and dad, brothers, and all those that love me, and dreaded sharing the news. I pulled over in a random Cambridge parking lot, unable to see beyond my tears. Looking back at my precious sleeping daughter snug in her carseat, and with her whole wonderful life ahead of her, I resolved to fight the ugly cancer monster again and win. I would be there to watch my son and daughter grow up and add their own unique "Crayola colors" to this wonderful world.

Seven years, lots of beautiful "artwork", and many great memories later, I'm thriving, happy, and blessed in so many ways.