October 2015

OCTOBER 2015

Tamara Pulley

new in the cuse

A FAMILY FOREVER CHANGED

GRIFFIN’S GUARDIANS

swm pink man KELLEY CUSTER

sw inspire

CINDY BELL PAMELA CONNER EMILY COOK

special feature

METASTATIC BREAST CANCER

W W W. S Y R AC U S E WO M A N M AG . C O M

SYRACUSEWOMANMAG.COM :: OCTOBER 2015

1

The Crouse Institute for Robotic Surgery

Minimally invasive.

Maximum care.

Getting you better, sooner. It’s why more patients are choosing Crouse — and why our minimally invasive robotic surgery program continues to grow. With a team that’s performing more surgeries in more specialty areas than ever before. And, we’re using the latest innovative techniques, which means stays are getting shorter and incisions are getting smaller. So put your care in the area’s most trusted hands — the robotic surgery team at Crouse.

Visit crouse.org/robotics to learn more.

Gynecology/Oncology Mary Cunningham, MD Douglas Bunn, MD Rinki Agarwal, MD

Gynecology Sargon Bebla, MD Carla Liberatore, MD Navpriya Oberoi, MD

General Surgery Brian Anderson, MD Jeffrey DeSimone, MD Kenneth Cooper, DO

Urology David Albala, MD Po Lam, MD Harvey Sauer, MD

Colorectal David Nesbitt, MD John Nicholson, MD

DREAM BIG. Imagine a world with less cancer, less heart disease and more birthdays!!

We proudly support wellness programs and research for finding a cure.

Complimentary Interior Design Service

300 Towne Drive, Towne Center, Fayetteville 315.637.7770 stickleyaudi.com

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Letter from the Editor 6 Out & About 7 Fashion Forward: When Vintage Becomes “New” 8 Platter Chatter: The Mission Restaurant 10 WISE Woman: Berenice Bonilla 16 In Her Own Words: Susan Lynn Major 18 Special Feature: Domestic Violence Prevention 20 SWM Pink Man: Kelley Custer 24 Special Feature: 31 Truths About Breast Cancer 26 New in the Cuse: Griffin’s Guardians 30 Special Feature: Making Strides Celebrates 20 Yrs 32 Cover Story: Tamara Pulley 34 SWM Knowledge: Knowledge is Power 39 Healthy Woman: Preparing for Breast Cancer Surgery 40 For a Good Cause: David’s Refuge 42 Special Feature: The Molly Project 44 Special Feature: Metastatic Breast Cancer 48 SW Inspire: Cindy Bell 54 SW Inspire: Emily Cook 56 SW Inspire: Pamela Conner 58 Snap Out of It:: I Am Not My Breasts 62 SWM Events & Calendar 66

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Comprehensive breast care starts here.

Connect with the skilled, compassionate specialists at St. Joseph’s Breast Care and Surgery.

• More than 15 years of experience serving the CNY community • Complete evaluation and treatment planning for diseases of the breast • Genetic counseling and testing • Multi-specialty approach for coordination of care between surgery, radiology, pathology, medical and radiation oncology Specializing in breast disease and treatment, our physicians and nurse navigators, led by Kara C. Kort, MD, truly connect with patients, providing support throughout the entire process. It’s our way of connecting lives while delivering the most advanced, comprehensive treatments. That’s a Higher Level of Care – and you won’t find it anywhere else.

4117 Medical Center Drive | Fayetteville, NY 13066 Call 315.744.1551 to schedule an appointment.

For more information, visit www.sjhsyr.org/breastcare.

Join Us for Making Strides Against Breast Cancer on October 18th.

Breast Care

and Surgery

A Member of St. Joseph’s Health

Letter from the Editor

SW Inspire Cindy Bell found her family, or some of her closest friends, when she was diagnosed with cancer. Although the local photographer only had a working relationship with AMS Models & Talent Founder Ann Marie Stonecypher prior to being diagnosed, the fact that they were diagnosed only three weeks apart brought them closer together and strengthened their resolve in their battles with cancer.

FAMILY American writer Richard Bach, known for his book “Jonathan Livingston Seagull,” once said: “The bond that links your true family is not one of blood, but of respect and joy in each other’s life.” Family, whether blood relatives or dear friends, play a vital role in this month’s issue of Syracuse Woman Magazine. Family protects us, encourages us and motivates us to be better versions of ourselves. And, perhaps most importantly, true family stays by our side through the mess, the chaos and the curve balls of life.

Those who run, we quickly learn, were imposters all along.

Beverly Daily’s family never left her side, although tensions were high around her situation. In 1997, she found a lump in her breast, but never spoke one word of it to her eight children or her husband. Then, in 1998, when her symptoms were no longer disguisable, her family encouraged her to finally visit the doctor. In July 1998, Beverly was diagnosed with Stage IV breast cancer.

She passed away just six weeks later. Tamara Pulley shares her mother’s story in this month’s Cover Story as a lesson for anyone to know your body, be open and honest about what’s happening with it, and to go see your doctor, even if it’s just to find out that nothing is wrong at all.

Sometimes “family” means someone other than a blood relative. Kristin Atkinson, Tara Polcaro and Kristin Johnston learned this quickly after founding The Molly Project, a Central New York-based nonprofit organization that puts on intimate photography sessions with women whose lives are being redefined by cancer or terminal disease — and one of this month’s Special Features. Family is always defined by the individual at these shoots, and sometimes that means friends, neighbors, caregivers and pets.

For SW Inspire Emily Cook, cancer stole the family member she was closest to: her mother, who was first diagnosed with breast cancer when she was pregnant with Emily’s brother. Because Emily was just 15 years old when her mother passed away, she, now 30, has made the decision to have both her breasts removed as a preventative measure — so that her children don’t have to experience what she did.

Our last SW Inspire, Pamela Conner, found familial support in her husband Christian when she was diagnosed with ovarian cancer in 2013. Although she lost support from some family members who didn’t agree with her holistic approach to treatment, Christian only fell in love with her more.

The couple tied the knot about one month after Pamela’s treatment ended.

Although I, personally, have a loving family at home, I also have one here in Syracuse.

As many of you know, I am leaving the magazine to pursue a career in North Carolina. This decision has forced me to reflect on the past year, the people I’ve met and the memories they’ve given me. Thank you all, from the bottom of my heart, for believing in me as an editor, as a friend and, most importantly, as a person still finding her way in this world. Not one of you questioned my decision to leave. Instead, you all wrapped me in love, wished me your best and sent me off with wisdom and hope.

I will never forget any of you, my second family.

In the words of Maya Angelou: “People will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Well, folks, I’ve got the feels — and I’ve got them bad.

To family, old and new,

Alyssa LaFaro ON OUR COVER

Tamara Pulley was photographed by Chris Szulwach of The Story Photography (thestoryphotography.com) in Franklin Square. Cover woman makeup artistry and hair by Jillain Salomone of J. Luxe Salon.

OUR TEAM PUBLISHERS

Kelly Breuer Barbara McSpadden

EDITOR-IN-CHIEF

Barbara McSpadden

EDITOR

Alyssa LaFaro

CREATIVE DIRECTOR Kelly Breuer

PHOTOGRAPHY

Gerard H. Gaskin Steven J. Pallone Alice G. Patterson Jussara Potter Chris Szulwach Matt Turner Photography Matthew Zhou

CONTRIBUTING WRITERS Steven Comella, MD Amy Delia Hayleigh Gowans Sarah Hall Kayla Isaacs Leesa Kelley Paige Kelly Alyssa LaFaro Susan Lynn Major Margaret Madigan Samantha McCarthy Katharine M. Osborne Ann Marie Stonecypher Catherine Wilde

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Renee Moonan Linda Jabbour Please contact Renee Moonan (315) 657-7690

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Unlike any other publication in the Syracuse area, our feature articles address major topics that interest local women.

Each issue includes articles on health, fashion, fitness, finance, home matters, dining, lifestyle and personal perspectives, as well as a spotlight on local Syracuse women.

Ads are due on the 15th of the month prior to publication. The print magazines will be distributed locally in over 350 locations and will be in your inbox electronically by the middle of every month. The publication is available free of charge.

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The magazine is published 12 times a year by Syracuse Woman Magazine, llc. and Eagle Publications, 2501 James Street, Suite 100, Syracuse, NY 13206.

Copyright © 2014 Syracuse Woman Magazine, llc. No part of this magazine may be reproduced or republished without the consent of the publishers. Syracuse Woman Magazine is not responsible for unsolicited submissions, manuscripts, photos or artwork. All such submissions become the property of Syracuse Woman Magazine, llc. and will not be returned.

O&A

::OUT & SPEAKEASY CNY — OCT. 22

Take off your mask and overcome your fear of public speaking at the first-ever SpeakEasy CNY on Thursday, Oct. 22, from 8 a.m. to 5 p.m. at the Crowne Plaza.

Joleene Moody, a professional keynote speaker and speaker trainer, and Joanne DelBalso, owner of No Fuss Accounting Services, are event hosts.

MOVIES

Bridge of Spies – 10/16

A dramatic thriller set against the backdrop of a series of historic events, Bridge of Spies tells the story of James Donovan (Hanks), a Brooklyn lawyer who finds himself thrust into the center of the Cold War when the CIA sends him on the near-impossible task to negotiate the release of a captured American U-2 pilot.

Burnt – 10/23 Chef Adam Jones had it all – and lost it. A two-star Michelin rockstar with the bad habits to match, did everything different every time out, and only ever cared about the thrill of creating explosions of taste. BURNT is a remarkably funny and emotional story about the love of food, the love between two people, and the power of second chances.

Rock the Kasbah – 10/23 The story of Richie Lanz, a rock manager with a golden ear and a taste for talent, who has seen better times. When he takes his last client on a USO tour of Afghanistan, she leaves him penniless and without his passport in Kabul.

Richie befriends a band of misfits and discovers a young girl with an extraordinary voice. Against all odds, Richie will take his last shot at creating an unlikely superstar.

The Peanuts Movie – 11/6 In Peanuts, a 3D, CGI animated comedic adventure, Snoopy, the world’s most lovable beagle – and flying ace!

– embarks upon his greatest mission as he and his team take to the skies to pursue their arch-nemesis, while his best pal Charlie Brown begins his own epic quest back home.

Enjoy four hour-long presentations throughout the day that will teach attendees how to find paid speaking keynote opportunities; find conferences that choose you as a keynote or presenter; create a powerful video that pits you as an expert; market yourself in unique, profitable ways using video and social media; overcome any fears of public speaking or presenting; and utilize social media platforms to put yourself above the rest.

SpeakEasy CNY was created to offer business owners, entrepreneurs and other aspiring speakers the tools to use speaking and presenting to give them the potential to grow their business, their profits and their passion.

For more information or to purchase tickets, visit speakeasycny.com.

AN EVENING WITH KIZEY — NOV. 6

The Central New York SPCA cordially invites you to attend its annual event, An Evening with Kizey, at Justin’s Tuscan Grill on Friday, Nov. 6, from 6 to 9 p.m.

The SPCA will award the 2015 “Kizey Award” recipient this evening. Attendees can enjoy wine, a buffet dinner, silent auction and live entertainment by Loren Barrigar and Mark Mazengarb.

Tickets are $75 each, and only 200 are available.

The Central New York Society for the Prevention of Cruelty to Animals is committed to making our community a kinder and safer place for the animals who share it with us through investigation, intervention and prosecution of animal abuse and neglect; education; sterilization; legislation; creation and maintenance of excellent living conditions, compassionate care and medical attention; and adoption.

For more information or to purchase tickets, contact Terri Para at 315-454-8787 or email development@cnyspca.org.

AU CHOCOLAT — NOV. 19

It’s that time of year again — time for the sixth annual Au Chocolat, Baldwinsville’s holiday chocolate and shopping event, to be held on Thursday, Nov. 19, from 3 to 9 p.m.

This village-wide open house features more than 20 of Baldwinsville’s specialty boutiques, each featuring wonderful holiday shopping deals, hospitality and prizes — and a delicious chocolate snack.

Each participant receives a passport to get stamped at each shop visited. A trolley service is available for inclement weather, and will transport attendees from store to store.

The sweetest event in Baldwinsville, Au Chocolat promises a fun night of local shopping, dessert and holiday spirit.

For more information, visit baldwinsvillechamber.com.

about

F OA

forward ::FASHION

When Vintage Becomes “NEW”

BY ANN MARIE STONECYPHER I PHOTO BY MATT TURNER PHOTOGRAPHY

pumps for a very fun and beautiful look. A dressy jacket would make this the perfect work look.

Whether you are gaga for Holly Golightly or moon over Marcia Brady, we all have a favorite fashion moment from the past. My favorite fashion flashback is Demi Moore’s character Jules in “St. Elmo’s Fire.” I loved the excessive accessories, her crisp white blouses, and the way her bracelets clicked and clacked when she moved her hands around.

IN HONOR OF BREAST CANCER AWARENESS MONTH

With the advent of vintage stores you can own a unique piece of fashion history and mix it in with your everyday wardrobe. I really do mean unique, because when you buy vintage, you are often wearing something one of a kind. What once may have been mass market can now be considered a chic slice of fashion history. Many fear that if you shop vintage you have to be all in or all out, or that you will look like you are wearing a costume, none of which are true. Vintage can mix seamlessly with your existing wardrobe with a few easy tips.

Leanne Crissy was diagnosed in 2013 at age 39 with Stage II breast cancer, and then with metastatic Stage IV bone cancer (the breast cancer moved to her bones) in August 2014. She has three children ages 12 to 16, and has an attitude as vibrant as she is.

DON’T COMPROMISE THE STYLE YOU ALREADY HAVE

Seek out items that still look like you, but with a hip bygone vibe. Take a single vintage piece and wear it with one of your favorite articles to give them a little spice. We went to maeflowers vintage on North Lowell Avenue and scored some cute pieces for our models.

Our first model, Nancy, found a cute flouncy floral shirt that looked great with her favorite pair of jeans. Taylor tried a flowered pencil skirt that we paired with a chambray shirt and jeweled necklace that looks very J. Crew. If we had paired this with a fringed vest she could have looked like the lost Partridge, but pairing it with something modern makes it fresh and not costume-y.

Leanne is looking chic in a “Madman-esque” sheath that is bright and splashy in a floral print. The TV show has made this silhouette popular again, but it’s also practical because it can be worn for several seasons and occasions with the addition of jackets and accessories. We juxtaposed a jean jacket and nude

Fashion isn’t the only message in this October fashion column. All of our AMS Models featured in this month’s article have a connection to breast cancer. Nancy Scherer is a 39-year survivor! She has lived strong to raise four children, eight grandchildren and five great grandchildren.

Taylor Stonecypher is my daughter, who has been with me for both of my bouts with breast cancer — first in 2003 and now, as I also battle metastatic bone cancer. She comes to as many of my appointments and speaking engagements as her college schedule allows, but this disease has touched her in a big way and taught her how precious life is. These are all women whom I admire, and I am in awe of how they look at life in the face of cancer. They understand that every day is a gift and are all beautiful women inside and out.

This article is about bringing the past forward in a fresh new way, and embracing and appreciating the everyday, while also looking toward the future with hope and courage.

Ann Marie Stonecypher is an award-winning business woman and the owner of AMS Models & Talent. She is also a stylist, inspirational speaker, two-time breast cancer survivor and freelance writer; and lives in the Syracuse area with her children Taylor and Steven, and her dog Cocoa. Models courtesy of AMS Models & Talent.

Clothing courtesy of maeflowers vintage. A special thanks to Cookie Caloia for letting us borrow “Sweet Pea,” her 1956 pink Cadillac; and to photography intern Jen Soltare, whose mother is also a two-time breast cancer survivor.

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chatter ::PLATTER

Creativity and Culture Give Color to

the MissionRestaurant

::PLATTER

chatter

PC

BY KAYLA ISAACS I PHOTOS BY CHRIS SZULWACH

Fifteen years ago, Steve Morrison — a sculptor and chef — faced a blank canvas. Viewing the bare Syracuse Wesleyan Methodist Church as a new endeavor, he shaped and formed the building into The Mission Restaurant, serving Pan American cuisine.

Greeted by a sky blue ceiling and stained glass windows in yellows and blues, pinks and purples, browns and greens, customers walk into the former place of worship, located at 304 E. Onondaga St., to see another church. Pergolas centered in the spacious room filled with booths, tables and stools draw customer eyes, evoking Steve’s vision for the space.

“The idea of putting a restaurant in a church was exactly that,” he says.

“This was a huge found object and just really got my juices flowing.” The wall beyond the bar sits covered in mosaic tile, and the surrounding area is layered with texture. Trinkets like a rooster, dangling 3-D stars and clustered crosses hang on the wall as tiny finishing details that together create The Mission.

“My whole life has always been about working with my hands,” explains Steve. “I was working at restaurants to pay the bills and then, one day, I finally realized that [cooking] is an art form. This is what I do. I make food as art.” After serving for 10 years as the head chef at Pastabilities, Steve left to open Mobinos, a brick oven pizza restaurant. Since discovering salsa and Mexican cuisine in high school, and then making spice his forte, Steve long held the idea of bringing a Mexican restaurant to Syracuse, jumping at any chance to bring his goal and specialty together.

Situated in the heart of Syracuse next to the Civic Center, The Mission caters to an audience of devoted customers as well as newcomers. It serves as the perfect midday pit stop for businesspeople, as an outing during nightly events, as a getaway for Syracuse University students, and the prime place for anyone with a rich Mexican craving to escape the city and indulge.

Serving favorites like tacos, burritos and enchiladas, The Mission also incorporates Latin, Cuban and Spanish dishes into its menu, most recently adding Asian ingredients to the mix. Regulars return to The Mission, named after the Southwestern church, to indulge in the staples that consistently remain on the menu — though it has additions throughout the year.

“The other half [of the menu] … it’s kind of my playground,” says Steve.

“It changes seasonally to incorporate different seasonal ingredients, and also different styles of cooking. And that’s where I get to have fun and be creative because we change it all the time.” With every menu adaptation, the most recent getting into full gear now, more than half of all appetizers and entrees are new. Taking inspiration from magazines like Savour, cookbooks and eating out, Steve uses each as a starting point to design new dishes. “This business is all about creating an experience for somebody. The food, the atmosphere, the service.”

While reinventing his menu keeps business fresh and ahead of growing competition, a huge attraction is giving people the basics they love and return to. But as a creative in the kitchen, Steve loves to spice things up from time to time. “Give them what they want,” he says. “I can still do my creative spin on them. I’ll still do them from scratch and make them as best as I can make them.” It’s this dedication to his craft that keeps The Mission strong, taking the environment to the extreme to make it unique and different, while still allowing people to get just what their taste buds crave — and maybe a little more.

The Mission Restaurant is open from 11:30 a.m. to 2 p.m. Monday; 11:30 a.m. to 9 p.m. Tuesday through Thursday; 11:30 a.m. to 10 p.m. Friday; 5 to 10 p.m. Saturday; and 5 to 9 p.m. Sunday. For more information, visit themissionrestaurant.com or like “The Mission Restaurant” on Facebook.

SYRACUSEWOMANMAG.COM :: OCTOBER 2015

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::WISE

woman

FEaturEd EntrEprEnEur Berenice Bonilla

Owner and Director, The Bérica Agency

“A

ha” moments count, but so do lifelong passions, and those are what sparked Berenice Bonilla’s entrepreneurial pursuits. A series of exchanges over time with family, friends and community members influenced her decision to launch her own business venture. “Because of these nudges, I always considered the idea of becoming an entrepreneur,” she says. “But I also always wanted to tie it to a larger cause.

When I discovered a way to connect my venture’s mission to community engagement, that’s when I realized it was time to move forward.”

Berenice’s passion for using the power of communication as a tool to connect with others awakened at a young age.

She began volunteering in elementary and middle school by helping younger students with reading and writing.

That led her to pursue internships with organizations and events focused on the empowerment of women and immigrant families in the Central New York region, a passion that has remained aligned with her business endeavors.

After college and graduate school, with an international relations major and Masters in communication, Berenice began her career in national advocacy organizations that allowed her the flexibility to combine her skillsets to her passions and oversee projects on program design, communications, and leadership development.

PHOTO BY CindY Bell PHOTOgraPHY Page deSign BY iSCa deSign STUdiO

After relocating this past winter to the Syracuse area in which she grew up, Berenice publicly launched the Bérica Agency for Purposeful Branding during Hispanic Heritage Month of this year. “Attending events and classes at the WISE Women’s Business Center was one of the very first things I did when I moved back to Syracuse,” she says. “It gave me the opportunity to socialize with sharp, like-minded women and work towards reaching a concrete goal.”

The agency is a strategic communications consultancy specializing in marketing communications, event design and organizational management.

The company supports sociallyfocused clients during times of heavy communication needs, or when it’s crucial for them to engage in multicultural and community outreach. Through the firm’s expansion, Berenice hopes to become a change agent for social justice by harnessing the power of communications to promote social good.

“I’ve always found it inspiring to contribute a bigger vision that can help make the world a better place.

My hope is to use this agency to expand the reach of important messages to key audiences. Through its success, I want to engage in philanthropic efforts myself and evolve Bérica to financially support programs that empower immigrants, women and children,” says Berenice.

wise words of wisdom…

“Be relentless in your pursuit but flexible with your methods.”

– Bernice Bonilla

WISE WISE HappEnIngS: HappEnIngS: Check out wisecenter.org/events for a complete list of upcoming events!

Women in Creative Businesses Roundtable Discussion

The Building Blocks for Starting a Business

Women in Business Against All Odds Roundtable

October 1, 12:00 - 1:00PM October 15, 12:00 - 1:00PM

October 6, 12:00 - 1:00PM October 28, 5:30 - 7:00PM

October 8, 12:00 - 1:00PM October 23, 12:00 - 1:00PM

Ask the Attorney: Protecting your Company’s Trademarks, Copyrights, and Trade Secrets

Meet the Entrepreneur October 27, 12:00 - 1:30PM

October 20, 12:00 - 1:30PM

A PROGRAM OF THE FALCONE CENTER FOR ENTREPRENEURSHIP AT SYRACUSE UNIVERSITY Funded in part through a Cooperative Agreement with the U.S. Small Business Administration. All opinions, conclusions or recommendations expressed are those of the author(s) and do not necessarily reflect the views of the Small Business Administration. Reasonable accommodations for persons with disabilities will be made if requested at least 2 weeks in advance. Call (315) 443-8634.

16

SEPTEMBER 2015 :: SYRACUSEWOMANMAG.COM

Come Join Our Family!

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Dr. Laura Martin is a family physician board certified in both Family Practice and Addiction Medicine.

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• Diabetes • Hypertention • Depression & Anxiety • Addiction • Pain Management • Cancer Screening • End of Life Planning • Women’s Healthcare

mycaresyracuse.com | 1304 Buckley Rd, Suite 302 • Syracuse, NY | 315.671.5790 Congratulations to all the Participants in

The Teal Ribbon Run & Walk for Ovarian Cancer Research & The Making Strides Breast Cancer Walk for Breast Cancer Research from the Upstate Medical University Department of Obstetrics and Gynecology and University OB/GYN Associates, Inc.

For comprehensive, quality care from physicians you can trust, turn to University OB/GYN Associates.

We are the only group with the Academic Difference.

All general and specialty women’s services are provided by our group • General Gynecology and Well Woman Services Including menopause and PMS • Family Planning • General Maternity Care • Urogynecology • High Risk Maternity Care • Gyn Oncology • Infertility Diagnosis and Treatment Including Advanced Reproductive Technologies • In-Vitro Fertilization Our physicians are faculty of the Upstate Medical University.

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words ::IN HER OWN 18

OCTOBER 2015 :: SYRACUSEWOMANMAG.COM

susan major

::IN HER OWNWORDS

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OUR FAMILY’S

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BY SUSAN LYNN MAJOR I PHOTO BY GERARD H. GASKIN

On May 8, 2009, my fight began as a mental battle, as I attempted to wrap my mind around the news that I had Stage III breast cancer. As a healthy 39-year-old wife and mother of three, this diagnosis came as a shock for my family, my doctors and me. Almost immediately, discussions began to revolve around the possibility that I may be carrying a breast cancer gene, making me more likely to develop aggressive breast cancer at such a young age.

The results confirmed what my doctors anticipated. I was carrying the BRCA2 gene for breast cancer. This impacted the treatment plan developed by my doctors, since having this gene increased the likelihood that I may develop other forms of cancer, mainly ovarian cancer.

In addition to a double mastectomy, 16 rounds of chemotherapy and 30 rounds of radiation, it was also recommended that I have a full hysterectomy. Almost immediately, my body began to respond to the treatment I was receiving to save my life.

After my first round of chemotherapy, I developed a pulmonary embolism. This began months of treatment to make sure that this embolism didn’t do what the cancer was already trying to accomplish.

In addition to this unexpected scare, I also dealt with debilitating sickness. As a young woman with a higher metabolism, the chemotherapy drugs went through my body quickly and made me even more ill than I ever imagined.

For my mother and sister, watching my treatment was made even more difficult by the fact that they, too, may be carrying the BRCA2 gene.

Almost immediately, they began the process of testing to determine if we shared this medical makeup. The results were positive. Yes, my mother and sister were both carrying the gene that made me more susceptible to developing cancer.

FIGHTING TOGETHER

Now, my fight became their fight as well. What could they do to battle against this possible threat to their own health and lives? For my mom (age 65) and sister (age 41), their decision was to have preventative mastectomies and hysterectomies. So, during the years of 2009 to 2010, we all entered into a journey we would never have imagined.

The choice of my mother and sister may not be everyone’s path, but it was their way of fighting to live. I honor and admire their choice each and every day.

The path was made even more difficult, as my mother was diagnosed with thyroid cancer and underwent surgery and radiation to rid her body of her own cancer. I remember sitting in my parents’ home with my mom and sister. My head was bald, a gift from my chemotherapy.

My mom was on the other side of her thyroid surgery and my sister was recovering from her mastectomy. As we sat together, we began to laugh.

Our laughter was our release for all that we had been through together.

It was a validation that no matter what happens in our lives, we can still laugh. We can still find joy!

I share that message in my new book, “Joyful Journeys: Sacred Pauses with God” (published by Divine Phoenix in conjunction with Pegasus Books), that was released in January of this year. The book is a series of spiritual reflections written to inspire people to joy during the weight of struggle. The struggle doesn’t have to be cancer. For some, the battle is emotional or spiritual. For others, the weight of struggle revolves around financial or relationship concerns. No matter what the challenge, we all share an ability to find hope and possibility in our darkest days.

CELEBRATING LIFE

On May 8 of this year, I celebrated the sixth anniversary of my diagnosis. Yes, as a cancer survivor I celebrate the day I was diagnosed.

I celebrate because each year beyond that diagnosis is a year I may not have had with my amazing husband and beautiful children. These are years that I may not have had with my parents or my sister. So, I celebrate each and every day that I am here.

I know that my treatment and life today was only made possible by many women and men who battled this disease before me. I honor all those who took part in medical studies to ensure that those of us, today, have the best possible chance for survival. My sister entered into a medical study herself to monitor those carrying the BRCA2 gene.

She is continuing her part to help those in the future.

Some who will be a part of that future are our own children. It is not lost on us that our family’s fight may continue during the next generation. However, we hope that our example, our perseverance, our joy and our desire to live will empower our children to make the best decisions for their lives.

When my youngest asks me whether or not I will have cancer again, I answer her truthfully: “I don’t know. But, I am doing everything to fight against this and to live each and every day to the fullest.” For now, this seems to suffice her curiosity.

None of us know the fullness of the days ahead. However, living each day with compassion, hope, joy and faith give us the strength to handle that which we cannot see. This is my message to my own children and the children that are entrusted to my care as a teacher at Christian Brothers Academy in Syracuse.

As I look at my mother and sister, today, I see women who have endured great challenges to ensure that we can still laugh together in the present. My dream for my book and for my life is that, with each word written and spoken, I can continue to educate and encourage others to fight for joy in their own lives.

For more information on Susan or to connect with her, visit susanlynnmajor. com or like her page on Facebook at facebook.com/susanlynnmajor.

feature :SPECIAL

Jus

FOR

BY PAIGE KELLY I PHOTOS BY MATTHEW ZHOU

Domestic violence is an epidemic in America. According to the National Coalition Against Domestic Violence, one in three women have been victims of some form of physical violence by an intimate partner; and one in seven have reported being stalked to the point where they felt they would be hurt or killed.

Bryn attended Cornell Law School to pursue domestic law, a career she figured she would get into later in life. But she got involved much faster than planned. “I interviewed at Hiscock and the opening they had the morning I showed up was in the domestic violence unit,” she details. “That’s where I started. It was exactly what I wanted to do: Represent women in family court and divorces.”

Here in Onondaga County, nearly 700 adults and children obtain shelter due to domestic violence each year; police receive more than 1,200 domestic dispute calls each month; and a quarter of all homicide victims are women killed by a current or former male partner, according to Vera House. Vera House defines domestic violence as a pattern of assaultive and coercive behaviors, including physical, sexual and psychological attacks, as well as economic coercion, that adults or adolescents use against their intimate partners.

Tara, who went to Syracuse University for both her undergrad and law degree, began her law career at a private firm in Buffalo, but wanted to move back to Syracuse to pursue her interest in family law. Since interviewing with Hiscock, Tara found deep fulfillment in working for a nonprofit with such strong clients. “I really enjoy the different parts of my legal career here,” she explains. “I can do different areas here, including family law and expanding into immigration. It’s been nice to hone my skills.”

It can be extremely difficult for victims of abuse to feel empowered enough to leave their partner, especially when it comes to concerns about finances and safety. Bryn Lovejoy-Grinnell and Tara Trammell-Levi are domestic violence lawyers who work for Hiscock Legal Aid Society, where they provide free legal assistance to low-income residents in the county.

Immigration issues on top of domestic violence issues offer even more challenges for Tara’s clients as they can be more vulnerable. For instance, clients often tell her that their abusers threaten them with this type of statement: “If you divorce me or leave me, you’re going to be deported.”

Tara explains that, first and foremost, safety is the most important part of a client’s case.

A PASSION FOR PROTECTION

Bryn and Tara began working at Hiscock in 2008 and 2009 respectively, each finding passion in their work. Bryn volunteered as a domestic violence advocate for about two-and-a-half years after graduating from Harvard. “I accompanied victims to court and I helped them fill out orders of protection and orders of custody,” she explains. “But I hadn’t gone to law school, and I wasn’t a licensed attorney. Some attorneys were amazing and some of them re-victimized my clients.

“While I felt like it was great to be able to provide emotional support and connect people to resources, it just felt like it wasn’t enough for me,” she continues. “I wanted to be one of the good guys instead of pushing my clients off to lawyers who didn’t understand domestic violence.”

“A lot of times the immigration issues are not the issue,” she adds. “They take a lot of time. The more urgent thing is the family law part of it. A lot of my clients come to me with immigration issues and I have to say, ‘I can’t council you with this now, but let’s talk about these other issues going on.

We need to make sure you’re children are in a safe place and that you can take care of them as best as possible.’”

With this approach, Tara has seen many inspiring success stories. “I can think of more than a handful that have gone from not being able to speak good English to going back to college and taking classes,” she shares. “They have career paths now. They have children who are going to be enrolling in college soon. They’re living the American dream now that they’re away from

stice

R ALL

their abuser and are able to support themselves. To them, their life is what it should be. They’re happy.”

Making a difference for clients also gives Bryn great fulfillment. “I just can’t get myself excited to get out of bed to go get rich people more money,” she says honestly. “I wouldn’t be good at that. I’m excited every day to help my clients. I’m struck so often with the strength and resilience people show.

Many of my clients were victims as kids of domestic or sexual violence, and find themselves in relationships like that as adults.

“It’s not easy in our society to break away from a relationship where someone has financial control and uses intimidation and emotional abuse,” Bryn continues. “Our society makes it very difficult for women to leave that. When people come to me and say, ‘I am ready to make a change. I see the impact it has on my kids,’ I think it takes an incredible amount of strength to do that. It’s not easy. People have to use public assistance and live in a standard of living they are not used to. They believe that their lives and, most importantly, their children’s lives are going to be better as a result.”

TECHNOLOGY SAFETY AND DOMESTIC VIOLENCE

In the future, Bryn and Tara only want Hiscock to expand and fit the changing needs of today’s technology — something that has made stalking much worse for domestic abuse in relationships, with victims feeling there is no moment of peace.

“The technology part always comes up,” explains Tara. “Women say they have a feeling their abuser knows where they are. They receive a text that says, ‘I know you are here right now. I know this is where you were.’ Just think of living in the fear of, Where is that person? He’s just sitting outside when you go to Wegmans. It becomes very terrifying and your world becomes very small. It’s a way for abusers to have control when they’re not even with you. It’s hard to think straight. Imagine having to parent under that level of stress.”

Bryn and Tara also hope that Vera House could one day have a daycare and a transitional shelter program to help families get back on their feet in their journey to being more independent.

For now, the domestic violence duo continues to provide stability to their clients, which usually includes custody and child support orders, as well as getting people divorced and financially separated from their abusers. It is an understatement to say that domestic violence is a huge problem in America and the world — one that is often hidden behind closed doors. But thanks to Bryn and Tara, many victims now have a voice.

For more information on Hiscock Legal Aid Society, visit hiscocklegalaid.org, like them on Facebook by searching “Hiscock Legal Aid Society” or follow @HiscockLegalAid on Twitter.

“It’s not easy in our society to break away from a relationship where someone has financial control and uses intimidation and emotional abuse. Our society makes it very difficult for women to leave that.”

— Bryn Lovejoy-Grinnell

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Men Get Breast Cancer,

BY KATHARINE M. OSBORNE I PHOTO BY GERARD H. GASKIN

In 2015, about 2,350 men will be diagnosed with invasive breast cancer, according to the American Cancer Society (ACS). Breast cancer in men is a topic that is not widely talked about in our culture — even though the ACS reports that one in 1,000 men will be diagnosed with breast cancer.

That means more than 300,000 men in the United States are diagnosed with breast cancer each year.

Kelley Custer, 54, of Auburn is one of those men.

About three years ago, Kelley noticed that an area on the right side of his chest was tender. As he moved his arms, it felt sore to the touch. “I went almost a year with it being sore,” he says. “I never really thought anything of it.” But it got to the point where Kelley could barely put on a T-shirt because it would rub against that tender spot.

So Kelley visited a doctor, who claimed that it was “nothing to worry about” — just a solid mass of fat cells — and sent him home. “I guess, me being a male, no one expected it to be breast cancer,” Kelley shrugs. But he really wanted to get a second opinion. “Always get a second opinion and, if you’re still concerned, get a third until you’re sure,” he advises.

So he made an appointment at Auburn Community Hospital with Dr. Deborah Geer, who specializes in breast cancer. She wanted to do a biopsy to figure out what the solid mass was. After a 45-minute surgery, Dr. Geer met Kelley in the recovery room to tell him that the removed mass was, in fact, breast cancer. “She told me I was lucky, and that I was the 1 percent,” he shares.

The solid mass in Kelley’s chest was Stage I breast cancer. He says he’s lucky that he didn’t have to go through radiation or chemotherapy.

It was amazing that she even found the tumor, he admits in our interview.

24 OCTOBER 2015 :: SYRACUSEWOMANMAG.COM

Too...

Both of Kelley’s sisters and his mother are breast cancer survivors, as well as his wife. “My wife is a five-year cancer survivor,” he says. “The doctor told me, technically, I am a survivor, too.”

Male breast cancer is sometimes caused by inherited gene mutations, reports the National Cancer Institute, and 5 to 10 percent of all breast cancer is hereditary. In fact, when someone’s BRCA1 and BRCA2 genes — which produce tumor suppressor proteins that help repair damaged DNA — are mutated, the body’s cells are more likely to develop additional genetic alterations that can lead to cancer.

It’s not common to hear about men getting breast cancer in our society today, but the ACS reports that 440 will die from breast cancer each year.

Kelley stresses that men should be doing their own self-breast exams, especially when they notice a sore or tender spot in their chest.

“A lot of men don’t want to admit that they have breast cancer because they are ashamed of it,” notes Kelley, “but they shouldn’t be ashamed. It’s something you had to go through.”

Until joining the American Cancer Society’s Making Strides Against Breast Cancer walks about five years ago, Kelley says he didn’t know any other men who had gone through an experience like his. He concludes: “The walks are a great way to meet people, get the word out and get a little exercise.”

Making Strides Against Breast Cancer is the largest network of breast cancer awareness events in the nation. Sponsored by the American Cancer Society, MSABC hosts walks to provide support for survivors, honor those who have lost their battle and help find a cure against breast cancer. For more information on Making Strides or becoming a team leader for the Syracuse walk, to be held on Sunday, Oct. 18, visit makingstrides.acsevents.org/syracuse.

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feature ::SPECIAL

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OCTOBER 2015 :: SYRACUSEWOMANMAG.COM

31 truths

::SPECIAL FEATURE

31

SF

TRUTHS ABOUT BREAST CANCER

COMPILED BY THE BREAST CANCER COALITION OF ROCHESTER

breast cancer will be diagnosed in men in 2015. For males, the lifetime risk of getting breast cancer is about 1 in 1,000.

October is Breast Cancer Awareness Month. Since there are 31 days in October, the Breast Cancer Coalition of Rochester (BCCR) wants to share “31 Truths About Breast Cancer”. For breast cancer survivors, awareness is only the first step. Right now, almost 3 million women in the United States are living with breast cancer.

9. The overwhelming majority (approximately 85%) of

1. Nearly 3 million women in our country are now living in the aftermath of a breast cancer diagnosis. According to the National Cancer Institute’s Surveillance, Epidemiology, and End Results (SEER) Program, in 2012 there were approximately 2,975,314 women alive who had a history of cancer of the breast in the United States.

2. Excluding skin cancer, breast cancer is the most commonly diagnosed cancer among women in the United States. Breast cancer represents 14% of all new cancer cases in our country.

3. The biggest risk factors for breast cancer are being a woman and growing older. The median age of diagnosis is 61.

4. A woman in the United States has a 1 in 8 chance of

developing breast cancer during her lifetime. It is estimated that a woman age 30 has about a 1 in 227 risk of developing breast cancer in the next 10 years; for a woman age 40, it is about 1 in 68; for a woman age 50, it is about 1 in 42; and for a woman age 60, it is about 1 in 28.

5. Breast cancer awareness campaigns have helped move the disease from behind closed doors but have not had a significant impact on the incidence of Stage IV disease or on mortality.

The incidence of Stage IV breast cancer disease has not changed since 1975. In 2015, an estimated 40,290 women in our country alone will die as a result of breast cancer.

women diagnosed with breast cancer have no relatives with the disease. A family history is only one risk factor. Other risk factors include getting older, benign breast problems, early exposure to ionizing radiation, having children later in life or not at all, longer exposure to estrogen and progesterone, lack of exercise, and drinking alcohol.

10. An estimated 155,000 Americans are currently living with

metastatic breast cancer, which occurs when cancer in the breast spreads to other parts of the body, most often the lungs, liver, bones, and brain. Approximately 20% to 30% of people first diagnosed with early stage disease will later develop advanced or metastatic breast cancer.

11. Complementary therapies are often used in addition to

medical treatments such as surgery, radiation, chemotherapy and hormonal therapy. These may include nutrition and exercise, Traditional Chinese Medicine, Ayurveda, homeopathy, mindfulness meditation, yoga, massage, Feldenkrais, Reiki, Qi Gong, Tai Chi and support networking groups. Before using any complementary therapy, patients should talk with their care team to make sure all aspects of their cancer care work together.

12. White women are more likely to receive a diagnosis of breast cancer, but African-American women have a higher mortality rate. The mortality rate for breast cancer for AfricanAmerican women is about 31 per 100,000 women compared to 22 per 100,000 white women. Comparatively speaking, Hispanic, Asian/Pacific Islander, and American Indian/Alaska Native women have lower mortality rates compared to white women.

All breast cancers are not the same, just as breast tumors do 6. True prevention means stopping breast cancer before it 13. not all grow at the same rate or spread in the same way. It is not develops. As a result of early detection awareness campaigns, which do not prevent breast cancer, there has been an increase in over-diagnosis and over-treatment for many women, involving surgery, radiation, and chemotherapy to treat nonlife-threatening cancers.

7. It is estimated that 231,840 new cases of invasive breast

cancer (cancer that has spread from where it started in the breast into surrounding, healthy tissue) will be diagnosed among women in the U.S. in 2015. In addition to invasive cancers, more than 60,000 cases of non-invasive (in situ) breast cancer will be diagnosed.

8. Men do get breast cancer. While less than 1% of new breast

cancer diagnoses occur among men, it is possible for men to develop the disease. It’s estimated that about 2,350 new cases of

the size of a tumor that determines the aggressiveness of breast cancer, but rather the tumor biology and microenvironment (the normal cells and molecules that surround cancer cells). Some breast cancers are small, found early, and yet are deadly. Some are fast-growing. Some grow slowly, are found by mammograms and are treated, but would never have been life-threatening.

14. We know that there are several types of breast cancer

based on the biology of the tumors. These subtypes respond to different treatments and have different prognoses.

Breast tumors are currently classified using three primary immunohistochemical (IHC) tumor markers: Estrogen Receptor (ER), Progesterone Receptor (PR), and Human Epidermal Growth Factor Receptor 2 (HER-2/Neu). The term “Triple Negative” indicates none of these markers are prevalent.

cont) ::SPECIAL FEATURE (

15. There is a possibility that environmental estrogens play a role in diseases such as cancers of the breast, uterus, and ovaries.

Environmental estrogens are a variety of synthetic chemicals and natural plant compounds thought to mimic estrogen in the body.

They may behave like estrogen in the body or may block the natural hormone. These include pesticides such as the now-banned DDT, polychlorinated biphenyls (PCBs), Bisphenol-A (BPA), natural plant products in our diet, and a host of other chemicals.

16. When it comes to decreasing the risk of breast cancer, become an

informed consumer. Look around your environment. Read product labels and don’t purchase a product that may be harmful to you or your family.

17. When it comes to breast cancer, help lower your risk by making responsible health choices: Eat a healthy diet, learn how to cope with increasing stress, integrate exercise into your life, identify and eliminate your exposure to environmental risk factors as much as possible, and advocate for evidence-based change.

18. At least 900 synthetic compounds in industrial and commercial products have been identified as Endocrine disruptors (EDCs) compounds that mimic or interfere with natural hormones. Many have been specifically shown to make estrogen-dependent human breast cancer cells grow in lab tests. EDCs that mimic estrogen cause concern because of their potential links to women’s health.

These compounds are found in everyday products: some pesticides, detergents, and plastics.

19. Epigenetics studies the processes regulating how and when certain genes are turned on and turned off. Cancer affects these processes. Nutrigenomics looks at how foods and nutritional supplements influence gene expression. Different foods may interact with specific genes to increase or decrease risks of common diseases such as Type II Diabetes, obesity, heart disease, stroke, and certain cancers by modifying gene expression.

20. Breast cancer is ultimately a disease of

malfunctioning genes. Lifestyle factors can generate growth-promoting signals to cells already primed to become cancerous because of changes in these genes. Most people are born with normal genes but during the course of a lifetime, genes can become damaged (mutated) in various cells and lead to cancer.

21. A growing body of evidence links synthetic chemicals to the rising incidence of breast cancer. Parabens, phthalates and other hormone disrupting chemicals are found in cosmetics, beauty products, and in women’s bodies. You have a right to know if the products you use contain compounds that may increase your risk of disease, including breast cancer.

22. To end breast cancer, we need more focus on preventing its

development to begin with. We need a greater understanding of how to stop the aggressive cancers that are not detected with mammography, how to stop breast cancer from recurring, and how to prevent it from metastasizing to other parts of the body and becoming lethal.

23. Most women who find their own breast cancer do so as part

of normal routines (showering, getting dressed, etc.) and not during systematic monthly breast self-exams. About 80% of breast cancers not discovered by mammography are discovered by women themselves. Knowing the landscape of your body and noticing slight changes is always wise. Becoming familiar with one’s breasts can help detect breast cancers that mammograms may miss.

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OCTOBER 2015 :: SYRACUSEWOMANMAG.COM

24. If you are diagnosed with breast cancer, ask questions. Ask about all treatment options for your specific tumor type. Ask about costs and side effects of treatments. Ask how and why a particular treatment option has been recommended for YOU.

25. Women in their 20s and 30s should have a clinical breast exam by a health care provider every three years, especially if they are from a high-risk family. After age 40, women should have a clinical breast exam every year, or more frequently if there is a strong family history of breast cancer.

26. Detection is not prevention. If you have a personal history

of breast cancer, never rely on technology as your sole method of surveillance. Knowing what is normal for you is important. Have clinical breast exams. Early detection of a recurrence can almost double survival outcomes.

27. The current infrastructure and focus in breast cancer has not led

to significant progress in ending the disease or in preventing deaths from the disease. This is true for research and health care and also advocacy: more of the same will not produce different results.

28. Five-year breast cancer survival rates do not give an accurate picture of progress against breast cancer. Because breast cancer takes many years, sometimes even decades, to develop and spread throughout the body, breast cancer survival statistics, particularly five-year survival data, do not accurately portray the impact of breast cancer, or the progress or lack of progress over time.

29. Hormone Replacement Therapy (HRT)

may increase your risk of breast cancer. The Women’s Health Initiative (WHI) clinical trials, launched in 1991, studied a group of 161,808 generally healthy postmenopausal women for the effects of HRT, diet modification and calcium and vitamin D supplement use on heart disease, fractures, and breast and colorectal cancer.

Results from the trial on HRT, published in 2002 found that, while the estrogen-only replacement therapy did not increase breast cancer risk, the risks far outweighed the benefits in the estrogen-plus-progestin arm. Overall, there was a 24% increase in the risk for breast cancer due to estrogen-plus-progestin.

30. In many cases, more treatment is not necessarily better treatment.

Many of the advances in recent years have not been discoveries of new treatments, but rather discoveries that less invasive treatments are as effective as more invasive and/or more toxic standard of care. There is a growing recognition that more treatment is not necessarily better treatment. And, in fact, less is often better because of the reduction in long-term side effects, which are sometimes severe and occasionally fatal.

31. No one needs to go through breast cancer alone. If you or a

loved one receives a diagnosis of breast cancer, the Breast Cancer Coalition of Rochester is here to help. The Coalition offers education and support programs, as well as advocacy for those uninsured or underinsured. The Coalition is a full-scope, grass-roots breast cancer organization serving survivors and families throughout the Finger Lakes Region of Central and Western New York. We can help you find resources in your own community.

If you or someone you know has been diagnosed with a breast cancer or gynecologic cancer, please call the Coalition at 585-473-8177. You can also visit their website at bccr.org for more information.

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::SHIFT+CONTROL

For You & Your Family

BY SARAH HALL I PHOTOS COURTESY OF ERIN ENGLE

::NEW IN THE

cuse

Griffin Engle could often be found throwing his hands up in the air, looking at the sky, calling out, “It’s a great day to be alive!”

Griffin, a student at Karl W. Saile Bear Road Elementary with big brown eyes, killer dance moves and a wicked sense of humor, was the son of Erin and Adam Engle, little brother to Grace and big brother to Everett. He loved all sports, but especially hockey and soccer, and he had a laugh that his mom said made the whole room laugh right along.

In other words, Griffin was an average kid — a special kid, a well-loved kid, but an average kid. But then he started getting headaches. The worst one came on his sixth birthday, Aug. 18, 2013. The headache was so bad it made Griffin vomit. “Something didn’t set right with us, so we brought Griffin to his pediatrician the following morning,” explains Erin. “We were thinking he may have had a concussion.”

Griffin had fallen on the ice during a hockey game a few days earlier, so a head injury wasn’t out of the question. The pediatrician performed a battery of tests, including a neurological exam, which Griffin failed. He couldn’t even walk in a straight line. The doctor sent him to Upstate Golisano Children’s Hospital right away for an MRI. At that point, the Engles were concerned, but they didn’t fear the worst. “I knew ‘tumor’ was a possibility because the doctors briefly mentioned it in the list of what it could be,” Erin says, “but, for me, it wasn’t a possibility for my child, for my family.”

But then the doctors came into the waiting room and gave them the news: Griffin had a “very large” tumor in the center of his brain. “My husband fell to his knees. My parents stared in utter disbelief. And I left the room,” she says honestly. “Our lives forever changed that day.

On Aug. 18, 2013, our lives would never, ever be the same.”

GRIFFIN’S BATTLE

Griffin was later formally diagnosed with Stage IV Glioblastoma Multiform, a form of brain cancer rare in children. It has no cure. He had surgery on Aug. 29, to remove as much of the tumor as possible. The surgery caused him to lose much of the strength and range of motion on his right side. The Engles explored their options, knowing all they could do was prolong his life in hopes of future medical advancements that might save his life, but no cure was immediately available.

At just 6 years old, Griffin had to undergo grueling radiation and chemotherapy treatments, as well as countless hours of occupational and physical therapy to regain the use of the right side of his body. But he never complained.

“Through all of this, Griffin was a trooper,” says Erin. “He understood he had a ‘boo-boo’ in his brain, and everything we were doing was to make it better. While in the hospital, we taught him meditation, which was so helpful for all his radiation treatments and for all the times he was scared. Griffin was a born athlete, so he had the natural instinct to work hard. He worked hard with a physical therapist to gain his strength back on his right side. He was able to get back on the soccer field, ride his bike and even back on the ice to play hockey.”

Knowing that Griffin’s type of cancer is likely to return, the Engles appealed to the FDA for help, winning a Compassionate Use waiver for a vaccine showing good results in clinical trials in adults. The Engles sent samples of Griffin’s tumor in hopes that it could be used to create a vaccine. But while they waited, Griffin’s tumor came back in July 2014. In another devastating blow, they learned there wasn’t enough left of the old tumor to make a vaccine. With no other options, Griffin came home on hospice care on Aug. 1, 2014. He passed away Sept. 12.

Although cancer stole Griffin’s life, it never stole his zest for it. Erin said he was still himself to the very end. “He knew he was sick, but I don’t believe he truly understood how sick he really was. His age was a blessing,” she admits. “He still smiled, danced, loved to be with friends and family, told jokes and really was so full of life.”

A LITTLE BOY’S LEGACY

Griffin has been gone nearly a year, and while Erin usually speaks of

him in the past tense, sometimes his mother slips and talks about him like he’s still here. Maybe it’s because she’s worked so hard to keep him alive in the hearts of the community members who supported him and the entire Engle family during his battle.

“We will never say Griffin lost his battle to cancer, but that he won,” explains Erin. “He won the hearts of so many. We had so many people who stood by us and supported us.” After Griffin died, Erin and Adam decided they needed to channel their grief into action and parlay the support from the community into a good cause. They started Griffin’s Guardians in December 2014 as a way to raise money for pediatric cancer research and increase awareness of diseases like the one that claimed their son’s life.

“As a mom of a son fighting cancer, I have learned a lot,” she shares. “I learned that my little boy was stronger than most adults. I learned his zest for life could not be taken by the cancer and I learned his nevergive-up attitude was going to carry me through his 15-month battle.

But what I was also shocked to learn was how very little funding is allocated to pediatric cancer research.”

Research for all kinds of childhood cancers only gets about 4 percent of the federal funding allocated to cancer research. Pharmaceutical companies provide about 60 percent of the funding for drug development in adult cancers, but almost none for childhood cancers. Because pediatric cancer is relatively rare, pharmaceutical companies looking for places to invest and get a return can’t find the volume necessary in childhood cancers in order to turn a profit. As a result, there’s not a lot of research being done into childhood cancers.

Griffin’s Guardians is hoping to change that. “We asked Griffin to fight the biggest battle of his life while knowing in the back of our mind there were not a lot of options when his GBM returned,” says Erin. “We, as parents, were left with no other options to save our son. Parents need options. Families need options. Our children need options. That will never happen without more research.”

The Cicero-based nonprofit has been busy in the seven short months since it launched. It’s held book drives in three North Syracuse schools, collecting more than 1,000 books for Golisano. The organization has also collected more than 300 newly sewn pillow cases for the hospital and provided aid to families struggling with expenses incurred while fighting pediatric cancer.

“We have also given St. Baldrick’s a check for $25,000 to partially fund a pediatric cancer research grant in Griffin’s honor,” says Erin proudly.

“Griffin’s Guardians’ reach now far exceeds Central New York, going across the country. We are committed to finding a cure so no other families have to go through this loss. This wouldn’t be possible if it wasn’t for the tremendous amount of support we have received.”

The organization also has a support group for siblings of children fighting cancer. This came from Griffin’s older sister, Grace, who was 8 when Griffin was diagnosed. “She was old enough to know the seriousness of Griffin’s sickness; she had the smarts to know what could happen; and she asked the very hard questions for a parent to answer. She worried — with every appointment he had, she always had to know the results. She grew up fast and learned more medical terminology than any 8-year-old should know. Ultimately, she lost her very best friend. That’s what cancer does to siblings.”

Grace’s Sibling Sunshine group sells homemade crafts to fund the program.

Grace’s goal, Erin says, is to make the siblings feel special, too, and acknowledge their strength and bravery throughout the cancer journey.

“We will do great things with this organization,” concludes Erin. “I believe it with all my heart that we will make a difference, we will bring awareness, we will help fund research and be part of giving other children more hope, more support and, most importantly, more options to fight and beat their cancer. This is just the beginning for Griffin’s Guardians.”

For more information on Griffin’s Guardians, visit griffinsguardians.org, search “Griffin’s Guardians” on Facebook or follow @GriffsGuardians on Twitter.

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::NEW IN THE

NC

guardians

GRIFFIN’S

“I learned that my little boy was stronger than most adults. I learned his zest for life could not be taken by the cancer and I learned his never-give-up attitude was going to carry me through his 15-month battle. But what I was also shocked to learn was how very little funding is allocated to pediatric cancer research.” — Erin Engle

feature ::SPECIAL

20 years of Fighting Breast Cancer

THE 20TH ANNIVERSARY OF MAKING STRIDES AGAINST BREAST CANCER

BY AMY DELIA, AMERICAN CANCER SOCIETY

The American Cancer Society Making Strides Against Breast Cancer walk will be held Oct. 18, 2015, at Clinton Square and will unite the community with a shared determination to finish the fight against breast cancer. But this is not your ordinary charity walk. Since 1995, the American Cancer Society has been raising funds and rallying the community to save lives from breast cancer. While we still have a journey ahead of us, significant advances have been made over the past 20 years, thanks in part to the Central New York community who supports this event.

As the American Cancer Society commemorates 20 years of saving lives, we are also celebrating the more than 2.5 million breast cancer survivors who have survived. Breast cancer death rates have steadily decreased in the past 20 years — after slowly increasing for many years before that. In fact, thanks to the society’s lifesaving work and improvements in treatment and early detection, death rates have declined 32 percent.

The American Cancer Society helped establish mammography as the gold standard to find breast cancer early, and works to help more women have access to these screenings. Here in Central New York, the society partners with the Cancer Services Program of the Health Department to ensure all women have access to mammograms and treatment, regardless of insurance status.

Research is a key pillar of the American Cancer Society’s mission to finish the fight against cancer. Over the past 20 years, the American Cancer Society has funded 122 breast cancer research grants to researchers at institutions in New York State, totaling nearly $46 million, including seven grants to Cornell University.

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However, more than advances in science and dollars raised enable the society to provide free, comprehensive information and support to those touched by the disease. Thanks to funds raised at events like Making Strides, the American Cancer Society offers programs such as Look Good Feel Better, a program aimed at helping women deal with the appearance-related side effects of cancer. A wig program provides free wigs, turbans and other head coverings to women in need. Reach to Recovery provides peer-to-peer support for women facing a breast cancer diagnosis. Last year alone, nearly 600 visits were made by Reach to Recovery volunteers in New York State.

A relatively newer program is Cancer Resource Volunteers, which provides specially trained volunteers onsite at treatment centers across Central New York including Upstate Medical University and St. Joseph’s Hospital Health Center. These volunteers meet one-on-one with newly diagnosed patients to offer support and resources during the cancer journey.

Thanks to the funds raised through Making Strides Against Breast Cancer and the support of the Central New York community, the American Cancer Society is available 24 hours a day, seven days a week for anyone facing a cancer journey. While great strides have been made against this disease, the fight continues to fund even more groundbreaking research, support patients and caregivers, and strive for a world with less breast cancer.

Making Strides Against Breast Cancer is a celebration of survivorship — an occasion to express hope and a shared determination to make this breast cancer’s last century. Each Making Strides event brings the community together to honor and celebrate breast cancer survivors, raise awareness about the disease, and raise money to help the American Cancer Society save lives. For more information or to register for the upcoming walk, visit makingstrides.acsevents.org/syracuse.

::COVER

story

::COVER

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CS

A FAMILY

forever changed Tamara Pulley shares her mom’s unexpected battle with breast cancer

“Who, what, where, when, why. That’s what I want to know from my daughters, and I give them all the facts. I encourage open conversation. I tell them to go to the gynecologist and get their exams done.”

— Tamara Pulley

BY ALYSSA LAFARO I PHOTOS BY CHRIS SZULWACH

On Sept. 14, 1998, Beverly Daily passed away. She was 69 years old.

Tamara Pulley stands proudly as she holds her mother’s picture. Born in Watertown on Sept. 21, 1928, Beverly Daily was a force to be reckoned with. She raised six children of her own and adopted two. And she was rarely sick — a feat when raising eight children.

CHANGING A FAMILY FOREVER The Daily family barely had enough time to process Beverly’s diagnosis, yet alone plan a funeral for her. “It affected the family so badly because it happened so fast,” explains Tamara. “To not know something was wrong with her, and then, all of a sudden, two months later she passes away. It was very hard on the family.

“My mother never went to the hospital,” notes Tamara matter-of-factly.

“She didn’t see a doctor regularly. And that’s how she raised us. We never went to the doctor. Out of eight children, seven of us have 13 years of perfect attendance at school. We were never sick.”

But Beverly really grew up in a generation long before helicopter parents. A generation that didn’t complain about headaches or upset stomachs. Perhaps that’s why, in 1997, when she began feeling off, she didn’t really tell anyone. “She knew there was something wrong with her,” remembers Tamara. “And it eventually became noticeable that one of her breasts was larger than the other.”

Eventually, Tamara and her siblings strongly encouraged their mother go see a doctor. “She had this lingering cough,” says Jim Daily, Tamara’s brother. “There were other signs, too, like the fact that she’d lost weight.

Finally, with a lot of pressure, she broke down and told us she had found a lump on her breast and had kept it from us for nearly one year.

She was scared. She had always been scared of doctors.”

Beverly was diagnosed with Stage IV breast cancer in July 1998. “The doctor that examined mom didn’t have the best bedside manner,” explains Debra Groszewski, Tamara and Jim’s sister. “He told my mother she was going to die. We were all crying in the parking lot because we knew she had cancer.”

“My dad was just lost,” she continues. “During that summer, he and my mom celebrated 65 years of marriage. Her death was so hard for him.

She was his best friend.”

In fact, it was so hard for Tamara’s dad, James, that he contracted three leading ulcers after Beverly’s diagnosis. “My dad was so upset because he simply wanted her to live,” adds Debbie. “And he couldn’t believe that she waited so long to be checked. We even went to other doctors, who said they wished she’d come sooner. But the cancer had already spread to both her lungs and her brain. Dad was mad at her, and she was hurt.

She believed in prayer and thought she would be healed. It wasn’t long after that she passed away. It was really devastating to all of us.”

Beverly’s death affected more people than her children. “Even my nieces and nephews — her grandchildren — were a mess,” says Jim. “And to this day, she still leaves a huge impact on the family. But you can really do one of two things in these situations. One, is beat yourself up, which I did for a while. I kept wondering, What if she got checked out sooner?

But, you can only beat yourself up for so long. The second thing you can do is encourage others going through the same thing not to make the mistake my mom did.”

::COVER

story

BREAKING THE SILENCE

Jim stresses that women should make breast exam appointments regularly, especially if they have a history of breast cancer in the family. Beverly’s short-term diagnosis gave everyone such a scare, that many of Jim’s sisters began seeing their doctors more often.

“I have been getting mammograms every year since,” explains Debra. “I do it because I know the risk, considering my mom had breast cancer. And that feeling never leaves me. It’s very hard, especially around the anniversary of her death. I think that if you can bring awareness to just one person by telling her to go get checked, then you’ve helped someone.”

Even Jim is an advocate. He says he often encourages his sisters and their friends to do their self-exams and visit their doctors. “Try to talk your parents into getting regular checkups,” he also advises.

“I would hate to see someone go through what we went through.”

We, as a culture, need to remember the ways of that generation, Tamara adds. “We were all raised by parents who grew up in a generation that didn’t talk about things. They didn’t talk about their problems — health or otherwise.

They just dealt with it, tried to cope internally and moved on with their lives. They never spoke about the past or shame, never poked or prodded the issue, never asked questions.”

Tamara admits that, today, she’s in constant conversations with her three daughters — who are 29, 24 and 13 years old — about everything, from sex to breast exams. “Who, what, where, when, why. That’s what I want to know from my daughters, and I give them all the facts. I encourage open conversation. I tell them to go to the gynecologist and get their exams done.”

Perhaps it’s the family’s now open conversations that helped save their niece’s life, who, at 19, discovered a lump in her breast. “It ended up being a benign cyst,” explains Jim, “but if you have a history, go get checked. Don’t wait until you are 40. My mother was very active — and she never drank or smoked. The doctor said she had the heart of a 20-year-old. So her diagnosis didn’t make much sense to us. But if she had just went to the doctor … who knows what would have happened.”

THE IMPORTANCE OF HISTORY

For six of Tamara’s siblings, knowing their health history is easy because of what happened to their mother. But Tamara was adopted.

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“I came to the states when I was 2,” she shares. “I was born in Vietnam, and am considered a war baby.” Born in 1971, just four years before the end of the Vietnam War, Tamara was one of many children who were dropped on the doorsteps of orphanages in Vietnam. Because of this, she has absolutely no family history. “I don’t have one clue,” she admits. “I know nothing about my birth parents and it makes me worry — about everything. Not knowing can be scary. And, in reality, my daughters don’t know their history either.”

But, on the bright side, this not knowing has instilled an awareness in Tamara. It reminds her to take care of herself and to tell others to take care of themselves. “It’s very easy for us, as parents, to get caught up in the everyday,” she says. “We put ourselves last when it comes to maintaining our health and making appointments with our doctors. We worry about our kids and the house and paying the bills. But I think about my mom now and know I could easily be in a situation similar to hers. And I don’t want my grandchildren to not know their grandmother.”

CANCER TOUCHES US ALL

For nearly nine years, Tamara worked at AMS Models & Talent alongside Ann Marie Stonecypher (our October 2014 cover woman) as her booking director and assistant. She saw Ann Marie struggle with her metastatic breast cancer diagnosis firsthand.

“She was my mentor, my friend, my family.

I was involved with her everyday life and watched her kids grow up. To see her go through the struggles of breast cancer … to see that … was horrible. And all I could think about was what my mom went through. I was terrified.”

Cancer doesn’t discriminate. It affects everyone involved from the person diagnosed to their sons and daughters. Its wounds and scars are felt by friends, coworkers and, sometimes, complete strangers. Even cats and dogs have been known to take on a protector role when their owners are diagnosed (various studies have shown they can detect the chemicals released by malignant tissues with their sense of smell).

In short, when someone has cancer, the whole family and everyone who loves them does, too.

Tamara Pulley was photographed in Franklin Square by Chris Szulwach of The Story Photography (thestoryphotography.com). Hair and makeup courtesy of Jillain Salamone, owner of J. Luxe Salon (jluxesalon.com).

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knowledge

Knowledge is

POWER

BY LEESA KELLEY

Earlier diagnosis: Analyzing breast tissue layers one by one allows physicians to detect cancers earlier than conventional mammography.

For women over 40, or those with a family history of breast cancer, an annual, 10-minute test, covered by insurance, that is intermittently uncomfortable, provides power. “I want every woman to understand that mammography is her best defense against breast cancer,” says Stephen Montgomery, MD, medical director of the Crouse Breast Health Center. “Chances for survival from breast cancer are far greater when the disease is found in its early stages, and today we can detect even the most subtle signs of early cancer.”

Better detection in dense breast tissue: Dense breast tissue, often found in younger women, can cause shadows on conventional mammograms, due to overlapping tissue, and hide tumors. Because 3-D mammography takes images of the breast from multiple angles, it offers the most state-of-the-art view through and around breast tissue.

When it comes to your health, knowledge is power.

Dr. Montgomery explains that breast tomosynthesis, or 3-D mammography, provides a more detailed picture of the breast than the traditional 2-D digital mammography. The 3D technology converts digital breast images into a stack of very thin layers, or “slices,” that allow an examination of the breast tissue on a high-resolution computer monitor in one-millimeter increments.

“When breast tissue is examined layer by layer, details of an abnormality are no longer hidden by tissue above or below it,” states Dr. Montgomery.

“This is particularly beneficial for dense breast tissue, which prior to 3-D mammography, was far more difficult to view and often required repeat mammograms and additional testing.”

According to Dr. Montgomery there are five major benefits to 3-D mammography screening that should, now more than ever, strengthen a woman’s determination to obtain the power to manage her health.

Less anxiety and less time: With 3-D mammography there are fewer false alarms for concern, and consequently a decreased need for callbacks to women for additional mammograms and biopsies. These benefits are a direct result of the improved accuracy in diagnosing abnormal structures offered by a 3-D view of the breast. And, if a diagnostic mammogram is needed after all, the 3-D system can be used to clarify inconclusive results.

More accurate detection: 3-D technology minimizes the impact of overlapping breast tissue making it easier to see a tumor. Reviewing these multiple images has helped physicians find more cancers than with 2-D images alone.

Safe and effective: During a 3-D mammogram, women experience a minimal amount of additional radiation, compared with standard mammography. However, this dose is below the FDA-regulated limit for mammography, and no additional risk from an amount of radiation this small has been shown.

“Knowing that screening mammography – required only once every year - is better than ever will hopefully help convince women to make and keep their mammography appointments,” says Kathleen Murphy, RN, manager of the Crouse Spirit of Women program. “Women also should reward themselves for taking care of their bodies, especially when they are taking care of others.”

In a recent email Murphy sent to Spirit of Women members, she suggested making a mammogram appointment then registering for the Oct. 8 Spirit Women Sparkle Ladies Night Out (crouse.org/sparkle ). Tickets are $25 each for shopping and pampering with massage, Reiki, photo booths, good food, gifts and a signature cocktail at Traditions in East Syracuse. The event also features a fashion show with breast cancer survivors as models – some escorted down the runway by Dr. Montgomery – and, the icing on the cake is dessert with the doctors. Ladies can mingle and meet with specialists, surgeons and internal medicine physicians willing to answer general questions.

So, what are you waiting for? Grab the power of knowledge, if not for yourself then for your loved ones. But definitely do the relaxation part for yourself. You’re worth it.

SYRACUSEWOMANMAG.COM :: OCTOBER 2015 39

PREPARING FOR

::SHIFT+CONTROL ::HEALTHY

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breast ca

BY STEVEN COMELLA, MD

As you all know, October is Breast Cancer Awareness Month. This gives me the opportunity to talk about surgical procedures having to do with breast cancer and breast cancer-related diseases. It can be an extremely anxiety-provoking topic when it comes to gathering information concerning surgical intervention, so hopefully I can help shed some light on the subject and reduce some of the anxiety that comes with preparing for surgery.

Along with owning a medical aesthetic center, I have been a boardcertified anesthesiologist for the last 11 years. In those 11 years, I have performed tens of thousands of anesthetics, many of which related to breast cancer. It truly is a disease that touches all of us in one way or another, and when the diagnosis is given, it suddenly becomes a part of your life seemingly out of nowhere. The entire process becomes a whirlwind of unexpected, life-altering changes. Within the course of a couple weeks families go from routine physician visits, to talking about an abnormal exam finding, to scheduling biopsies and procedures, to taking time off from work for surgery; all the while dealing with the reality of living with a disease that will change the course of their families’ lives forever.

In contrast, the typical progression of most other surgical processes is that there is a period of discomfort or pain all leading up to a necessary surgery to fix the problem. Whether it’s a broken finger or a bum appendix, most people just want the offending pain to go away and the time to deal with the fact that even though it is not something they were wishing for, surgery will help make the pain stop. Breast

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cancer, in contrast, oftentimes does not present this way. In many instances, lumps or masses are painless and found on routine physical exams. And very often the progression from diagnosis to surgical intervention is quick. Patients are overwhelmed with news of an unexpected diagnosis and then flooded with the experience of finding a surgeon, management options, and potential scary outcomes. On top of that, they now may face a surgical procedure and all of the unknown that goes along with having to undergo surgery. Having to manage all of this is the reason why I thought it might be beneficial to go over some of the basics of what to expect when it comes to breast cancer surgery. What better time to talk about it than Breast Cancer Awareness month.

The bottom line is that it is perfectly normal to be nervous about an upcoming surgery, especially if you have never had surgery before or had to deal with a diagnosis like breast cancer. So here are a couple of things to think about when it comes to breast cancer-related procedures and surgical intervention.

First, don’t be afraid to “have a conversation” with your anesthesiologist.

The more you can tell him/her about what frightens you, the easier it will be for your anesthesiologist to quell your fears. Knowing the specifics about what makes you anxious makes it a lot easier for the team to help you through the experience of surgery. Much of what I hear when it comes to anxiety about surgery has to do with the fear of feeling something while under anesthesia and what exactly it means to “be asleep.” There can be a tremendous amount of confusion when it comes to the different types of anesthetic options that exist and the

::HEALTHY

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ancer surgery type of anesthesia you may need for your procedure. For the most part, anesthesiologists take great pride in being able to make people feel very comfortable about having to go through a procedure that they’re not looking forward to having done. I, personally, consider it a great honor to make someone smile or hear them say that they feel a little better about what’s going to happen next after speaking with me.

Second, many breast biopsy and lumpectomy related procedures can be done in an outpatient setting, meaning you have your surgery and then go home the same day. Our anesthetic options, today, allow us to get you off to sleep quickly and wake you up quickly so that your time at the hospital or surgery center is minimized. This is definitely a good thing as I don’t think anyone is interested in spending one minute longer in a hospital than they have to. Most people find it comforting to know that they will be awake, alert and comfortable fairly quickly after their surgery. On the other hand, more extensive procedures like total mastectomies and breast reconstructions will most likely necessitate one to three days of recovery in the hospital before being discharged home. All of this should be made clear to you prior to the day of your surgery, but if you have a question about what to expect, don’t be afraid to ask your anesthesiologist or your nursing team when you meet them on the day of your procedure.

Last but not least, always remember that you are your own best advocate. Things can move quickly from the time you are diagnosed to surgical intervention. Your anesthesiologist can be a valuable resource for you to ask questions about what to expect from a surgery

and the recovery that will follow. So if you have a question, ask it.

None of us ever wants you to feel like you don’t have time to ask a question or feel comfortable with what is about to happen. Take the time to make a quick list of questions and/or concerns that you have when it comes to your procedure so that you know what to expect. Your surgical team, which includes your surgeon, nurses and especially your anesthesiologist, will be happy to talk to you about any concerns you may have. Remember, making you comfortable both physically AND emotionally is what we do as anesthesiologists, so take advantage by speaking up and asking questions.

“Knowing the specifics about what makes you anxious makes it a lot easier for the team to help you through the experience of surgery.”

cause ::FOR A GOOD

DAVID’S REFUGE PROVIDES CARE FOR THE CAREGIVER

BY HAYLEIGH GOWANS I PHOTOS COURTESY OF DAVID’S REFUGE

Six years ago, Warren and Brenda Phofl went through an experience that no parent should ever have to go through — the death of their 21-yearold son David. When David was 8, he began losing his vision and, soon after, doctors diagnosed him with Batten Disease, a rare and fatal neurodegenerative disorder that begins during childhood.

But good can sometimes come from bad, the Phofls learned, and for the past four years the Manlius couple have sent more than 250 parents, who are caregivers for children with special needs or a terminal illness, on weekend trips to local bed and breakfasts through their organization David’s Refuge. “For us to know that David’s life and death and story continues on and is a blessing to so many families — it blows us away,” explains Warren.

The couple strives to let parents know they are not alone; that what they do for their child is one of the most important things; and that they are loved by God, explains Warren, who spent 15 years as a pastor at Eastern Hills Bible Church in Manlius.

Caregivers who are eligible for weekend trips are given the opportunity to stay at local B&Bs, where they are treated to luxuries like massages and dinners at no cost. They also have the chance to connect with organization “hosts,” or couples that have experienced similar caregiver circumstances.

“We find a lot of parents are so immersed in the care of their child that they often do not take the time to care for themselves, and they basically check out,” explains Brenda. “Often, their marriages fail or they become sick physically or emotionally, and it’s just a disaster waiting to happen.”

42 OCTOBER 2015 :: SYRACUSEWOMANMAG.COM

Warren adds: “We believe if we can pour life into them, they can continue to pour life into their children.”

In addition to the weekend away, David’s Refuge has grown to provide other activities throughout the year for caregivers, including a date night, an annual family picnic and a Valentine’s Day dinner.

Caregivers are able to reapply for a David’s Refuge weekend away on an annual basis.

“We’re trying to create what we call a ‘rhythm of respite.’ If we can create this natural rhythm where mom and dad have something to look forward to, studies have shown that it enables parents to be able to hold on,” Warren explains. “We try to teach them to create these rhythms of respite. It’s good for emotional health and an important part of what we are doing.”

Since they started David’s Refuge four years ago in a converted innstyle space in their home, the Pfohls have expanded the organization to about a dozen B&Bs in the Syracuse and Finger Lakes regions. In the coming months, the Pfohls hope to have a David’s Refuge presence in the Rochester area because their reach is rapidly expanding. Eventually, they hope to bring the organization to a national level.

“We never realized what the impact would be when we started,” adds Brenda. “We just wanted to share what we have and give back — and little did we know that the need was so desperate. It’s so rewarding to see the faces of families from the time they walk in the door to the time they leave. They look like totally different people. They’re lifted up. It’s amazing.”

On Oct. 18, David’s Refuge is adding another event to the rhythm of respite by offering a Mom’s Makeover Day from 1 to 4 p.m. at 499 S. Warren St. in Syracuse. For more information about the event or David’s Refuge, visit davidsrefuge.org, like them on Facebook at facebook.com/DsRefuge or follow @DavidsRefuge on Twitter.

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feature ::SPECIAL

project The Molly

::SPECIAL FEATURE

the molly project

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BY CATHERINE WILDE I PHOTO BY ALICE G. PATTERSON

something she was going to miss profoundly.

Being diagnosed with a terminal illness provides everyday moments a new perspective and meaning. Photographs with family and friends can take on a new significance and leave loved ones with a lasting memory.

But, often, shoots will include parents and children, a family dinner or a mother reading a bedtime story to her child. “We come into someone’s home and take pictures of what makes that family unique,” says Tara. A mother smiling, tickling and cuddling her children are some of the most precious moments that she aims to capture and what she calls the “everyday” moments.

That is why Kristin Atkinson, Tara Polcaro and Kristin Johnston, in 2012, founded The Molly Project, a Central New York-based non-profit organization that puts on intimate photography sessions with women whose lives are being redefined by cancer or terminal disease. Sessions are personal and natural, leaving behind the posed atmosphere of the studio in favor of the more comforting setting of the home. Photographers spend a couple of hours with the woman and their caregivers and loved ones, capturing everyday and cherished moments.

THE START OF SOMETHING BEAUTIFUL

Tara Polcaro, one of the photographers, remembers her first session with a woman named Wendy as having a profound effect on her.

Diagnosed with Stage IV cancer, Wendy’s coworkers had pitched in to pay for Tara, a professional photographer, to come shoot family portraits.

“Her thought process was she knew she was dying,” explains Tara. “She was in chemo to buy time — not a cure — and at the time, she had a 13-year-old and a 16-year old and just wanted pictures for them.

“She wanted pictures for her children before she left and she wanted them before her hair fell out,” she continues.

Tara recalls coming home from the session so touched by the love and support that she was witness to, that she knew this was something she wanted to do for more people. So Tara got together with her friend Kristin Atkinson, whose mother Molly had passed away from cancer when Kristin was just 19 years old.

The Molly Project was born.

The initiative resonated deeply within Kristin, who handles the promotional end of The Molly Project. She regrets not having more pictures of her mother, saying ruefully that, in her favorite picture of her mother, she is not even looking at the camera. Instead, her mother was usually the one behind the camera, capturing everyone else’s moments. “I struggled with a way to honor my mother all throughout my adult life and nothing stood out to me until now,” says Kristin of the project.

“I think she would have loved the idea because family was so important to her,” she adds. Family moments are what the sessions aim to capture, though not everyone’s definition of family is the same. Family can include best friends, neighbors, caregivers and pets.

CREATING MEMORIES, CAPTURING LOVE

Tara says she has shot many pets, recalling one woman who is an equestrian and in treatment, uncertain if she will ever ride again.

The whole photo shoot took place at the woman’s stable with her children and horses since riding was a huge part of her life and

“They are moments you take for granted,” Tara adds. “If the person is not here anymore, those moments are the most precious.”

Other families may dress a specific way for a shoot. For example, Tara remembers a photo shoot with one family where the mother was a Cornell graduate, so the entire family wore Cornell sweatshirts for her. Another woman’s special “everyday moment” included a daily tea routine with her daughter, so the photo session captured her and her daughter gossiping and laughing, since that was what made their relationship unique.

While the reason behind each photo shoot is a very somber one, Tara says the sadness of the occasion is often pushed to the background as the participants all just revel in a chance to make the most of their time together, memorializing their favorite moments with their loved one. Tara adds that she often stays in touch with the women she photographs and is touched by their deaths, but takes comfort in the fact that she has given them a gift that means the world to them. “At the end of the day these women give me more than I could give them.”

Kristin encourages anyone on the fence about arranging a photo shoot under these circumstances to consider it because the pictures will be so important to their family in the future. She faults what she calls “a culture of disposable pictures,” given the ease with which cell phones can take pictures and the haste to delete unflattering selfies. In addition, any concerns about appearance fade away in the presence of such love and the significance of the moment.

“At the end of the day, when you’re with the people you love, they don’t care what you look like,” says Tara. Kristin agrees, noting that the purpose of the photo shoots is not to focus on flaws. “It’s to focus on the love of the family,” she shares. “The photographs capture that bond of the family.”

Tara says women get photographed in various stages of illness and the diagnoses vary across the board, though cancer is a predominant one. “It’s just a wonderful thing to see that even in the worst situation, a family’s worst nightmare, there is so much beauty and love still there,” explains Tara. “It brings out more love and more beauty and all we’re trying to do is document that.”

For more information about The Molly Project, visit themollyproject. org, like them on Facebook at facebook.com/TheMollyProject or follow @MollyProjectCNY on Twitter.

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feature ::SPECIAL

Metastatic Breast Cancer

What is it Really?

m.e.t.s.

::SPECIAL FEATURE

BY PAIGE KELLY Approximately 155,000 Americans today live with metastatic breast cancer, according to the Metastatic Breast Cancer Network. Also known as Stage IV or advanced breast cancer, many misconceptions surround the disease. Metastatic breast cancer is incurable, but, fortunately, there have been many breakthrough discoveries in recent years prolonging the life of some patients diagnosed.

UNDERSTANDING METASTATIC BREAST CANCER

Metastatic breast cancer is a heterogeneous, or diverse, disease, explains Dr. Kristine Keeney, a surgeon in the Upstate Breast Care Center at the Community Campus here in Syracuse. When breast cancer has metastasized, or spread, to different parts of the body, it means different lifespans for each patient. It, typically, spreads to the bone, brain, liver or lungs.

“It’s very individualized. For example, if a woman has bone metastasis as the only site, she can continue to live well for a fairly long time,” says Dr. Keeney. “If women, unfortunately, develop metastasis to the brain, that’s not a good sign; death from breast cancer will happen much faster. So there are different misconceptions: One is that it’s an immediate death sentence, but for most people it’s not.”

Women don’t die from cancer that remains in the breast, according to the Metastatic Breast Cancer Network. The situation becomes fatal when cancerous cells travel to other vital organs. The affected organs are still treated with breast cancer drugs because it’s still breast cancer, just in a different part of the body.

The goals of each patient and each individual situation also determine the type of treatment a patient receives. For most, the goal is to live the longest they can. Dr. Keeney explains that, in reality, it becomes about balancing quality of life because not everyone will be able to live well for a long time.

Metastatic breast cancer can lurk and spread, which is a big misconception that surrounds the disease. Metastasis can happen anytime later in life, no matter how seemingly cancer-free a patient was or how aggressive previous treatment may have been years before.

TYPES AND TREATMENT OF METASTATIC BREAST CANCER Breast cancer metastasizes throughout the body in two main ways. The first way is if the metastatic breast cancer is hormone receptor positive. “This is at the tumor cells themselves; receptors are simply proteins,” explains Dr. Keeney. “For example, it’s like an antenna hanging out, an estrogen receptor; so any estrogen circulating through the bloodstream binds onto that receptor and that causes an interaction at the cellular level to make the cancer very happy. It then grows and divides to make more cancer cells. So that is an estrogen receptor positive tumor. Those tumors are very responsive to estrogen in the body, so estrogen stimulates those cancer cells to grow.

“Therefore,” she continues, “anti-estrogen drugs that scientists have created fit onto that same receptor, but don’t cause that interaction to happen.

They block that receptor. All those receptors, instead of being locked in with estrogen, are now being locked by these drugs, so it shuts down the tumor cells.”

Breast cancer can also metastasize if the cancer is HER2 positive. HER2 stands for human epidermal growth factors receptor 2. According to Dr. Keeney, HER2 is a stimulating protein of cancer cells. That protein allows the breakdown of cell walls and blood vessels, which means the breast

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cancer spreads faster. This is a very aggressive type of metastatic breast cancer; but in the last 10 years, there have been groundbreaking research discoveries in treating HER2 positive metastatic breast cancer.

Scientists created a drug called Herceptin, or trastuzumab, which is a monoclonal antibody, or a protein that specifically blocks any HER2 positive protein from being activated. About a quarter of all metastatic breast cancers are HER2 positive, according to Dr. Keeney. “Herceptin has been a complete game changer. There has been about a 50 percent increase rate of HER2 positive women and a much-improved life span because of drugs like Herceptin (trastuzumab) and pertuzumab. In the metastatic setting, these drugs are the primary form of treatment,” explains Dr. Keeney.

HER2 drugs are significantly increasing progression-free survival in patients with metastatic breast cancer. According to the New England Journal of Medicine, a study published in February 2015 found that the combination of three anti-HER2 drugs — pertuzumab, trastuzumab and docetaxel — improved the survival rate of patients compared to the combination of placebo, trastuzumab and docetaxel. Compared to the placebo group, the pertuzumab group lived an average of 16 months longer. While this is definitely no cure, new studies like this help doctors and patients find ways to come to a plan that balances longevity and quality of life. Trastuzumab and pertuzumab are also drugs in the targeted therapy category, which are beneficial because they don’t kill healthy cells the way chemotherapy does.

According to the American Cancer Society, other targeted therapies include adotrastuzumab emtansine, which is used to treat breast cancer when patients have already received trastuzumab. Also, if the original trastuzumab is not working, a doctor may prescribe lapatinib, another targeted therapy drug.

Since metastatic breast cancer spreads, surgical removal of tumors is not always the best option.

Surgeons monitor the disease to make sure patients respond to treatment. “Scientists have done studies on this, and there’s no survival benefits operating on the primary tumor for women with metastatic cancer,” explains Dr. Keeney. “We reserve surgery for women who are progressing or their primary tumor is not responding to their treatment. So if their tumor continues to grow — or, for example, it shrinks initially then springs back up — we operate if their metastatic disease is otherwise fairly wellcontrolled because we don’t want them to have a gross ulcerating tumor. It becomes a quality of life issue.”

HOPE FOR THE FUTURE

Dr. Sandra M. Swain, a professor in the Department of Medicine at Georgetown University and medical director at the Washington Cancer Institute in Washington, D.C., explained in an interview published on Medscape in March 2015 that patients participating in clinical trials and studies are vital to making strides in finding better treatments and, possibly, one day a cure. New advancements in treatments are adding on more years to a patient’s life, making the diagnosis less of an immediate death sentence.

Metastatic breast cancer is a devastating disease, and while a cure is always the goal, new advancements in treatments are crucial as they mean more quality years for patients — a very worthy cause.

For more information on metastatic breast cancer, visit the Metastatic Breast Cancer Network’s website: mbcn.org.

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CINDY BELL

12-Year Breast Cancer Warrior

BY ALYSSA LAFARRO I PHOTO BY JUSSARA POTTER “It’s about life, not death. It’s about love, not fear. It’s about finding positivity.” Cindy Bell doesn’t dwell on the fact that she had breast cancer. Instead, she embraces the good that’s come from it: friends, strength, awareness.

Today, the local photographer reflects most heavily on her relationship with AMS Models & Talent Founder Ann Marie Stonecypher.

Although she knew Ann Marie prior to her diagnosis, Cindy didn’t truly become friends with her until after cancer.

“I think the most important thing about being diagnosed is I met Ann Marie,” she tells me. “She was three months ahead of me with her own diagnosis, and she was the guiding light helping me through mine.

Even though it was a negative thing, getting breast cancer, it was a very positive thing for me. I met so many amazing people because of it.”

A TRICKY DIAGNOSIS

In early 2003, Cindy scheduled her annual mammogram and, according to her doctor, the results looked normal. Just eight months later, however, she discovered a dimple on one of her breasts and quickly made an appointment for a second mammogram.

This time, her results showed Stage II breast cancer.

“But I didn’t know it was Stage II until after I had a double mastectomy,” she admits. “Prior to surgery, the doctor informed me I was Stage I and that the cancer hadn’t spread to my lymph nodes.” One week after surgery, however, doctors called Cindy to tell her the bad news.

She’d need more surgery to remove a cluster that had formed, and would have to undergo chemotherapy treatments.

But Cindy found solace in other women going through the same experience. And she called Ann Marie almost immediately upon hearing she’d need more surgery. “Ann Marie was my guiding light,” she shares. “Because, up until that point, I didn’t know I would have to do chemo. I was really a mess. But all it took was a five-minute conversation with Ann Marie to calm me. She put everything into perspective for me. She looked at things with rose-colored glasses. She said, ‘You know, we have children, families, lives. We can put cancer on the back burner and just deal with it.’ And I quickly went from terror to calling my girlfriend who was going to cut my wig.”

After four months of chemotherapy, she searched for alternative forms of healing and began receiving Reiki. She also underwent polarity therapy, a holistic healing practice that utilizes the natural energy in the human body. “I even met with a consultant at Natur-Tyme to detox my system,” she notes. “I just wanted to get the right vitamins and any essential oils that would be beneficial for my body.” Most recently, she tested for BRCA and, with relief, discovered she does not carry the gene for breast cancer.

PHOTOGRAPHY FOR A CAUSE

After finishing chemo, Cindy was at a loss. “You have this team,” she says, “and you go through all these doctor appointments, and then

they’re like, ‘Okay, you’re done.’ I thought, What do I do now? Because I didn’t want to focus on the cancer.”

So instead, she began photographing men and women who went through the same experience she did. “It wasn’t about me anymore,” she stresses. “It was about other people who were going through it.

And it was about showing all the life people with cancer have to give. It was very therapeutic for me, and I think it was therapeutic for them.”

Inspired by her new demographic of clients, Cindy collaborated with a writer and designer to create a book that featured stories and photographs of women who lived through cancer. The project was so successful that Susan G. Komen of CNY began to give it to other women living with cancer as a sign of hope and inspiration.

Then, in 2007, she got involved with SIS (Sustain, Inspire, Survive), a grassroots organization near Rochester committed to improving the quality of life for people battling breast cancer. SIS provides financial assistance, essential services and quality of life enhancements during treatment to those in need. “I photographed women for their calendar project to inspire others who were going through treatment,” says Cindy.

“All the women I met,” she adds, “I think that’s what the game changer was for me. I just met so many great people and friends who are in my life because of these experiences. Having cancer enhanced my life. And I think it is up to you to always find the positive in every situation. You have that choice.”

PAYING IT FORWARD

Since her diagnosis in 2003, Cindy has photographed literally hundreds of women, both through the abovementioned projects and in volunteering her time as a photographer for Susan G. Komen’s Race for the Cure, held each May in Central New York. In fact, she began photographing women for Komen before she even learned she had breast cancer.

“Four years before I got breast cancer I was photographing for Komen,” she says. “I used to think, Look at these women. They are so strong and amazing. I was so inspired by the strength and sisterhood they had, never thinking I would be one of them. Now, each year, I photograph women from the survivors’ tent. No one knows I had breast cancer. They just think I am the photographer. And I think that’s okay, because I am not defined by breast cancer. The way I look at it, I don’t need to wear the pink shirt or the pink ribbon. Being a breast cancer survivor is just another title we take on, like mother, wife, sister, daughter, photographer.

“And I think because I don’t let cancer define me,” she continues, “it allows me to help people. I think that, maybe, I got it to make a difference in other people’s lives, to pay it forward. Now I can help people and let them know there’s another side to this awful disease.”

Cindy Bell spent more than four years photographing the cover women of Syracuse Woman Magazine, and she has a special place in our hearts. For more information about Cindy or her photography business, Focus Studio, visit cindybellphotography.com.

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EMILY COOK

Preventative Cancer Warrior

BY KATHARINE M. OSBORNE I PHOTO BY STEVEN J. PALLONE “I grew up a lot faster than my friends,” says Emily Cook, 30. “I was a lot different.” Emily was 5 years old when her mom, Kathy Virginia, was diagnosed with Stage III breast cancer. The doctors told her mom that they wanted to perform a mastectomy as soon as possible.

Regardless of the fact that she was eight months pregnant with Emily’s baby brother, Kathy had her left breast removed. Just two weeks later, Emily’s brother Jacob was born via C-section. “I remember thinking, Mom’s been in the hospital for a while now,” shares Emily. After the birth of her second child, doctors told Emily’s mom that if she could make it five years cancer-free, the prognosis looked promising. Kathy did not make it past a year and doctors said her chances of surviving another year were slim to none.

Despite what doctors predicted, Emily’s mom was a fighter — she spent nine more years fighting for her life. Emily didn’t know at the time that the cancer was terminal. “She never really showed us she was sick; she always had a smile on her face,” Emily says, tears forming in the corners of her eyes. “Looking back, I see how strong she really was.”

Kathy went through more than 70 radiation treatments and tried 11 different chemotherapy options. “She just kept fighting back,” says Emily, who witnessed all these things, something an innocent child should never have to see. “I think my mom was trying to make it the norm, because this was something that I would have to be around a lot,” which is why Emily grew up a lot faster than many of her friends and classmates. Choking back her tears, she says she was too afraid to even sleepover at a friend’s house because she was nervous that something would happen while she was gone.

Kathy passed away at 42, when Emily was just 15 years old. Most of Emily’s friends didn’t even know her mom was sick. At her mother’s funeral, Emily was approached by the Carol M. Baldwin Breast Cancer Research Fund to join their board of directors. They changed their bylaws so that they could have a 16-year-old on the committee.

Shortly after, she was officially considered a member. Emily was the youngest board member the foundation had. “I brought more of the youth perspective to everything,” she says, noting that she stayed with the foundation for many years before heading off to Onondaga Community College to study broadcast journalism. Eventually, she transferred to Syracuse University’s S.I. Newhouse School of Public Communications to pursue a bachelor’s in television, radio and film.

WHEN CANCER GETS PERSONAL

When Emily was 20, she found a benign lump in her breast. Emily feared the fact that she hadn’t noticed it, but her doctor found it to be of concern and insisted she come in for a mammogram when she turned 25. However, Emily became pregnant with her daughter at 23, and life prevented her from making it a priority. It wasn’t until she turned 30 this past March that she became serious about preventative measures. “I began to think, What if I only had 10 more years to live, too?” she admits.

Although Emily tested negative for the BRCA gene, it still didn’t give her the comfort that she needed. Doctors decided that the necessary preventative maintenance would be to have mammograms, sonograms and MRIs every six months. But six months seemed a long time to wait. “It’s that six-month window of: Are they going to find anything?

Are they going to miss anything?”

She went to see Dr. David Tyler, who happened to be the same breast surgeon who worked with her mom. In nearly every doctor’s visit, Emily met someone that knew her mother. “It gave me some comfort in knowing that this is the right decision for me,” she says.

DRASTIC TIMES CALL FOR DRASTIC MEASURES

On July 1, Emily preventatively underwent a bilateral mastectomy to decrease her chances of a breast cancer diagnosis. It has been one hell of a journey for her, she admits, as this decision was the hardest she’s had to make.

A union electrician, she can’t go back to work while she is in the recovery process. The disability insurance company denied her claim and called her mastectomy an “elective procedure,” insisting Emily didn’t really need it. “When you are told that you have more than a 50 percent risk of getting breast cancer at some point in your life, ‘worry’ becomes quite an understatement.”

Emily admits that the surgery has “removed a weight off [her] shoulders.” With the breast tissue removed, Emily can feel everything, especially if a tumor grows — something she’s relieved by. Her two children played a huge role in her decision. As they are still quite young (Liliana is 7 and Griffin almost 3), Emily realized she needed to make this decision for herself and her family to stay healthy.

She says her husband, Shawn, and her father, Pat, have been her number-one supporters in this difficult journey. Emily’s younger brother went blind when he was 13 and lives with their father, today.

“On top of taking care of my brother,” says Emily, “he always wants to watch the kids and have us over for dinner; and my step-mom, Mary, always offers to take care of the kids when I need the help.” Emily’s husband has been by her side every step of the way, too. “He is the most hardworking and loving man. He is my rock.”

YOU ARE NOT ALONE

Emily wants other women going through similar situations to know that they are not alone. This is a very involved process and takes time and thought. It is important to be concerned about your body and know how to be proactive. “Insurance companies should know that, too. We should be taking the time to recover instead of trying to figure out how to keep our families afloat,” she urges.

Today, Emily continues to recover and lives one day at a time. She hopes to eventually be able to pick up her son again. She often thinks of her mom and tries to keep her traditions alive. “She’s always there,” she says, adding that her mother’s habits have followed her — like to never show up to someone’s house empty-handed. “So now I always bring flowers whenever I visit someone, because everybody loves flowers,” she laughs. “It’s the little things I try to carry on in memory of her.”

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PAMELA CONNER

Two-Year Ovarian Cancer Warrior

BY SAMANTHA MCCARTHY I PHOTO BY STEVEN J. PALLONE “There was less than a 5 percent chance I had cancer,” explains Pamela Conner, who was diagnosed with ovarian cancer in November 2013, at the age of 39. Ovarian cancer is hard to detect, as the most common symptoms — bloating, pelvic/abdominal pain, trouble eating or feeling full quickly, and urinary urgency or frequency — are often signs of other problems.

After noticing frequent urination and abdominal pressure, Pamela decided to wait a few more days until her scheduled appointment with her gynecologist. But she was quickly referred to an oncologist at the appointment. She was diagnosed with Stage IC3, meaning she’d need surgery followed by chemotherapy. Wanting a second opinion, she contacted Cancer Treatment of America (CTA), and spent about a week there just to make sure she was correctly diagnosed.

A trans-vaginal ultrasound helped doctors discover she had a 13-centimeter cyst that needed to be removed. She opted to have it taken out and spent the next five months undergoing six different treatments.

“I lost about three months’ worth of work during the whole experience,” she shares.

LOVING SUPPORT AT HOME

One of Pamela’s biggest supporters during this trying time was her husband, Christian. After being together for eight years, the two tied the knot one-and-ahalf months after treatment ended. Her sister, mother and neighbors were also very supportive. “Bringing over meals, snow blowing or mowing my lawn helped me during recovery,” she says. However, in deciding to take a holistic approach to treatment, she lost support from some family members who disagreed with her decision.

After treatment, Pamela realized she had some lifestyle changes to deal with. She lacked energy and the drive to be active, and gained weight in response. Also, the chemotherapy treatments damaged nerves in her feet. “The balls of my feet go numb and walking on concrete is awful,” comments Pamela, who adds that, thankfully, the nerves will re-grow over time.

Muscle aches were the largest side effect of treatment. “Everything hurt and, for one to three days, I was very weak,” she explains, noting that her everyday tasks were impacted by these muscle aches. Also, Pamela experienced an allergic reaction to an antihistamine that caused her vision to blur and mouth to twitch. Her husband rushed her to the hospital, where she received Benadryl, which cured her symptoms in just a few minutes. Over time, however, such side effects have improved.

Overall, Pamela’s job, family and personal life were equally impacted.

“Before being diagnosed, I had no sick days for seven years,” she remembers, and many of her coworkers didn’t know how to handle her news. Financially, Pamela struggled with hospital co-pays, which, even with top of the line health insurance, are horrendously high.

Nonetheless, these challenges didn’t slow down Pamela on her road to recovery. Her advice: “Inform and educate the people around you so you do not have to go through the experience independently.”

KNOW THE SYMPTOMS

Lower back pain, abdominal pain and frequent urination were all early detection signs for Pamela. “Frequent urination was the most noticeable,” she explains. “To be honest, I thought I had a urinary tract infection (UTI).” Bloating, fatigue and constipation are other common, early detection signs, which vary for each patient.

Such symptoms make it difficult to become informed right away, and misconceptions often guide women in the wrong direction. “If you have done a pap test or your ovaries have been removed, you can still be diagnosed with ovarian cancer,” explains Pamela. It can also be hereditary, which she discovered during treatment, and it’s evident in her family history. It’s also important to note that women who’ve never had children have a higher risk for developing ovarian cancer.

For women experiencing any of these symptoms, Pamela advises they spend time researching them to help with early detection. “If you have any of the symptoms, find a doctor that can treat that kind of cancer,” she adds. “Your regular doctor is thinking the furthest answers from cancer.”

Becoming educated is easy as long as women know where to look, she notes.

The New York State Fair has booths set up to inform the public about the disease. For example, the local ovarian cancer awareness organization Hope for Heather attends every year.

Pamela also suggests getting involved with support groups on Facebook and in the community before, during and after the overall experience. On Facebook, she says, there are support groups for each type of cancer, stage and surgeries that women have gone through.

Locally, Pamela recommends getting involved with Grace’s Garden, a non-profit organization that provides emotional and social support to women of Central New York who are affected by gynecologic cancers.

Because Pamela’s ovarian cancer was hereditary, she also belongs to a support group for women who are BRCA positive. BRCA genes produce tumor suppressor proteins that help repair damaged DNA, and if they are mutated, the body’s cells are more likely to develop additional genetic alterations that can lead to cancer.

Survivors Teaching Students, Saving Women’s Lives is a nationwide ovarian cancer awareness group. Pamela attends the Syracuse area awareness group, which helps ovarian cancer survivors and, just recently, caregivers. “We are able to talk about our journey and symptoms to medical students to help them be educated in case this happens to them down the road,” she explains. As an advocate, Pamela wants to inform and educate as many community members as she can about ovarian cancer.

Oral contraceptives, giving birth to and breastfeeding children and removing ovaries are all ways to decrease the risk according to Pamela. Now cancer-free, she hopes that by providing this kind of information, she will help save someone’s life someday. She finds strength in being able to help others get through what she herself experienced just two years ago.

SYRACUSEWOMANMAG.COM :: OCTOBER 2015

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it! ::SNAP OUT OF 62

OCTOBER 2015 :: SYRACUSEWOMANMAG.COM

it!

:SNAP OUT OF,

breasts

I AM NOT MY

BY MARGARET MADIGAN

In keeping with the October issue’s Breast Cancer Awareness theme, I would like to discuss one very important item: breasts.

Now, in this day and age of clichés and platitudes about women not being represented by their bodies, but by their minds and hearts, most, in theory, will bristle at what I’m about to say. But it’s just food for thought.

As women, our breasts are much of our identity. Just as any body part would be, it’s yours, part of you. But breasts — just think about it. It starts when we are children. Little kids love to point out the fact that “girls have boobies and a vagina; boys have a penis.”

So, when we get to puberty, breasts seem to become a focus for everybody. Girls are worried about keeping up with other girls and “getting them,” while boys seem to be obsessed with girls who do have them and terribly cruel to girls who don’t. Oh yes, you remember all the “flat as a board” and “mosquito bites” and “itty bitty t***y committee?” Come on, every person on the planet past 11 years old has heard those sayings. The middle school population is obsessed with breasts.

It continues on through high school and college, into adulthood. We’re obsessed with breasts. Then, we become mothers and our breasts take on a different meaning. For those who decide to breastfeed, our breasts become a sort of sacred connection with our babies. We feed our babies with them.

They represent motherhood.

Then there’s society, which has made breasts a focal point in whether or not a female is considered “attractive.” Face it, all of us women at one time have thought, Ugh, I wish my breasts were … bigger, smaller, rounder, higher (just pick one). Yes, yes, in theory, we should not worry about our physical appearance and focus on what’s inside. But, alas, we are human. We like to be “attractive” to others and, well, ourselves, too. I like to look in the mirror and feel pleased, don’t you? My life doesn’t depend on it, though.

So, what happens when something happens to our breasts? Something that we have absolutely no control over? Having breast cancer affects women much differently than cancer of any other part of our bodies (except possibly ovaries). I remember when I was growing up in the 1970s. No one talked about breast cancer — until Betty Ford, wife of President Gerald Ford, announced she had breast cancer and had a double mastectomy. I remember hearing a collective gasp from society in thinking her womanly ways were somehow gone because she had no breasts. How sad. Her life is over, some thought. Wait, what? She’s a perfectly productive, intelligent woman! But, back then, gender roles

SI SF SIF

were still very traditional. Woman played the gatherer and nurturer who just sat there and looked pretty, while man acted as the hunter and provider. The end.

Yes, we’ve come a long way. Women are now not as tied to their gender and bodies for identity, and we have accepted the other gifts we have to become CEOs and world leaders. But some of those more primitive feelings are hard to shake. So maybe we should just acknowledge them.

It’s okay to feel a fond, womanly attachment to your breasts. Just like men do with their genitalia. We all know most men are overly attached to their own, going so far as to give them nicknames. I can honestly, 100 percent say I’ve never named my breasts. But yes, they are still my “trusty companions.” And that’s okay. You’re loving a part of you, and what’s wrong with that?

It’s similar to the feeling a woman gets when she goes through menopause or gets a hysterectomy; or when a man gets a vasectomy or a prostate removal. It is common to feel that your “reason for being,” your ability to mate is done. You’re washed up, you’re old news. We all know it’s not true. But, basically, for centuries, a person’s worth was based mostly on their ability to produce offspring. It’s just a fact. Yes, we have all evolved, but I’ll be honest: As I go through perimenopause myself, I feel a bit like I’m losing my worth or my youth. It’s silly, I know. Our heads know it’s not true. But, let’s be honest, we’ve all felt it. And that’s okay.

And this is how I’ve been told women with breast cancer sometimes feel. I have never had breast cancer, but I have had scares. I’ve gotten the phone call: “Ms. Madigan, the doctor would like to take some more images.” Turns out, so far, I just have lumpy, dense breasts. Great. But I actually remember physically grabbing my breasts and thinking, What would happen if I had to get these babies removed? They make me look better in a dress, they play a role in physical intimacy, they have fed my three children and, most importantly, they are a part of me and I love every part of me.

I’m glad we’ve evolved and it’s not taboo to talk about anymore. The age-old controversy of even uttering the word “breast” has definitely changed today. Today, with the increase in breast cancer awareness efforts especially, people even put bumper stickers on their cars and where bracelets that say, “Save the ta-tas” (which I don’t care for, by the way. I find it kind of un-dignifying, but that’s just me). I just wanted to take it a step further and explain that, yes, we women hold a special regard for our breasts, and that’s okay. It doesn’t make us any less or any more of a person. They don’t make us smarter or dumber or more or less useful. But we do love our breasts and that’s okay, so let’s try and show them that love by getting a mammogram, today. I wish you all good health. Remember: Take time to love yourself.

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Events

Syracuse Woman Magazine

WOMEN’S DAY AT THE NEW YORK STATE FAIR Each year, the first Wednesday of the New York State Fair, local businesses dedicated to helping women gather together in Chevy Court for Women’s Day. This annual expo and luncheon brings together some of the best organizations in Syracuse and always features a wonderful, midday speaker. This year’s speaker, Senator Kirsten Gillibrand, talked about the need for paid leave for workers. Congressman John Katko and New York Comptroller Thomas DiNapoli also shared a few words with the audience. Syracuse Woman Magazine spent the day enjoying this great event, talking about our community efforts and meeting the wonderful people from the Syracuse community who support us! Thanks to Art and Home Center Manager Cheryl Lavin for hosting another fabulous Women’s Day. WBOC 2015-2016 KICKOFF MEETING “Social Made Simple” was the theme for the WBOC (Women Business Opportunities Connections) kickoff meeting on Wednesday, Sept. 2, at Pascale’s Italian Bistro. Speaker Michelle Arbore, a Rochester native and social media guru, presented on social media creation, management and training for solo entrepreneurs and small businesses. The upcoming October meeting will be held at the Genesee Grande on Wednesday, Oct. 7, from 5 to 7:30 p.m. and will feature nationally renowned speaker, author and creator of “Take Your Daughter to Work Day,” Nell Merlino, who will present “Building Your Business at the Dawn of the Digital Age: How to Stand Out and Connect to Your Customer.” To register or to learn more about WBOC, visit wboconnection.org today. Photos courtesy of Enfoque Images.

OCTOBER 2015

HOLISTIC LIVING FAIR, WHEN: 9 a.m. to 3 p.m.

WHAT: Join Towne Center Fitness Studio for a free fair to highlight local small businesses with amazing products and services. There will also be free raffles, giveaways and demo group fitness classes throughout the day.

WHERE: Towne Center Fitness Studio, 311 B Towne Dr., Fayetteville INFO: For more information, search “Towne Center Fitness Studio” on Facebook.

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12 p.m. to 3 p.m.

BARK FOR LIFE OF CNY WHEN: WHAT: Bark For Life is a noncompetitive walk event for dogs and their owners

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to raise funds and awareness for the American Cancer Society’s fight against cancer.

WHERE: Johnson Park, Route 57 & Vine Street, Liverpool INFO: For more information, contact Amy Kotwica at 315-437-7025.

WEDDING WORLD EXPO WHEN: 11 a.m. to 4 p.m.

WHAT: Connect with the finest wedding professionals at CNY’s largest wedding event — Wedding World Expo. Enjoy interactive exhibits, runway fashions, massages, food, wine and more.

WHERE: NYS Fairgrounds, 581 State Fair Blvd., Syracuse INFO: For more information, visit cnyweddingworldexpo.com.

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GO RED FOR WOMEN LUNCHEON WHEN: 10:30 a.m. to 1:30 p.m.

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WHAT: Hear survivor stories, get expert advice and enjoy the interactive member fair at the Go Red For Women Luncheon, the primary fundraiser for women in CNY to raise awareness against cardiovascular disease.

WHERE: The OnCenter, 800 S. State St., Syracuse INFO: For more information, contact Jessica Ambrose at 315-728-7548 or email jessica.ambrose@heart.org.

Skaneateles IN THE FALL

Fleur-De-Lis Florist ...of Skaneateles For all your Fall floral decor: wall decor custom designs Fall gourds & pumpkins 26 East Genesee St., Skaneateles, NY 13152 (315) 685-3484  www.fleurdelisfloristny.com

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