Heroes of Hope (2016)

HEROES OF

HOPE CONQUER : CELEBRATING THE PATIENT VOICE TM

This book includes stories submitted to the 2016 Hero of Hope Patient Award by readers of CONQUER: the patient voice magazine. This award honors all people diagnosed with cancer, cancer survivors, and their dedicated oncology nurses, doctors, and families, and their entire communities. The stories included in the Heroes of Hope publication were submitted by the nurses who care for patients with cancer, family members, friends, or the patients themselves.

We thank all those who submitted such inspiring stories about these outstanding people who were willing to share their experiences with readers of CONQUER: the patient voice, members of the Academy of Oncology Nurse & Patient Navigators, and the entire cancer community.

This book is made possible by support from Takeda Oncology

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HEROES OF

HOPE CONQUER : CELEBRATING THE PATIENT VOICE TM

From the Publisher of CONQUER: the patient voice TM in Partnership with The Lynx Group Cranbury, New Jersey

Made possible by support from Takeda Oncology

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Copyright Š 2016 The Lynx Group All rights reserved. This book is protected by copyright. No part of this book may be reproduced in any form or by any means, including photocopying or scanning, nor be distributed in print or electronic form without written permission from the Publisher.

For permission to reuse any material from this book in any form, or for additional copies, please contact the Publisher.

Published by: The Lynx Group 1249 South River Road, Suite 202A Cranbury, New Jersey 08512 Phone: 732-992-1880 ISBN: 978-0-692-80540-4 Library of Congress Control Number: 2016959720 Edited by Dalia Buffery and Adam Buffery Design by Robyn Jacobs and Stacey Holston Cover design by Robyn Jacobs and Chris Alpino

Printed in the United States of America

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Table OF Contents 7

Introduction: Capturing the Voices of Resilience

By Dalia Buffery, MA, ABD

9

26

We Are Never Alone

Sisterly Love

ELIZABETH ANN BIDA

SHARON DANN

Submitted by Nina Belis

Submitted by Elle (Lesle Ellen) Sheedy

12

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An Inspiration Outside the Classroom

Take Control or Be Controlled

MICHELE BRODTMAN

Submitted by Lilian Deneski

HENRY “HANK” DENESKI

Submitted by Phyllis Daley

15

32

A Mother and Wife Who Doesn’t Quit

Stomp the Monster

SANDY CASSANELLI

Submitted by Elizabeth Martinez

SETH GRUMET

Submitted by Craig Cassanelli

19

35

A Generous Oncology Nurse

Finding Strength Through Small Actions

DONNA CLARK, RN, BSN, OCN Submitted by Denise D. Gates-Baker, RN

DELA HIGHT

22

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Connecting Through Ink

Cancer Saved My Life

CLINT CUMMINGS

LINDA JOHNSON

Submitted by Lara Gaston, RN

Submitted by Danielle Ripley-Burgess

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Table OF Contents

con’t

41

61

The Voice of Male Breast Cancer AMBROSE KIRKLAND

Inspiration to the Cancer Community

Submitted by Angela and Adrianne Kirkland

ALISON M. SACHS, MSW, CSW, OSW Submitted by Vicki Koceja

44

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A Rare Cancer Diagnosis Leads to a New Foundation

Navajo Women: Overcoming Cultural Barriers

CINDY LOVELACE

NELLIE SANDOVAL

Submitted by Gene Lovelace

Submitted by Fran Robinson, RN, OCN

47

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Laughter Is the Best Medicine

Difficult Cancer, Stronger Patient

SUSAN McDEVITT

TANTIA STUTMAN

Submitted by Riley McDevitt

Submitted by Kathleen Abbott

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My Friend, My Hero LANIE MENA MEISSNER

A Song of Hope for Children with Cancer

Submitted by Mary Kruczynski

SARAH SWAIM Submitted by Marion Swaim

52

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Cruise for Cancer

An Overcomer and a Survivor

JERRY PARINS

JEARLEAN TAYLOR

Submitted by Caroline Glander, MSN, CNL, CN-BN, OCN

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Looking Through a Different Lens EUGENE H. PASCHOLD, MD

She Is the Glue That Keeps It All Together

Submitted by Julie Pope, RN

MARYANN WAHMANN

AWARD WINNER

Submitted by Tricia Wahmann-Knatz

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A Positive Patient Inside & Out

“My Mommy Is Brave and Strong”

KIMBERLEY PRESUTTI

LEAH WALIA

Submitted by Marie C. Kelleher and Denise A. Borelli, RN, BSN, OCN

Submitted by Maura Price, RN, BSN, OCN

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Capturing THE Voices OF Resilience INTRODUCTION

By Dalia Buffery, MA, ABD

SENIOR EDITORIAL DIRECTOR, CONQUER: the patient voice

This book is a testament to the enduring and creative spirit of patients with cancer who have displayed extraordinary courage, love of life, and determination in the face of a diagnosis of a life-threatening cancer.

These stories were written by nurses, oncology nurses, family members, and friends of patients who have received a cancer diagnosis. In a few cases, the patients told and submitted their own stories, displaying one more act of determination to share their account in hope of inspiring other people who receive a cancer diagnosis to keep going, take control of their lives, and do the best they can in the face of such adversity.

These inspiring and personal stories were submitted for the Second Annual Hero of Hope Patient Award, which was initiated in 2015 by CONQUER: the patient voice magazine, in partnership with the Academy of Oncology Nurse & Patient Navigators (AONN+).

All the stories included in this publication were part of the submission and nomination process for the 2016 Hero of Hope Patient Award. All the nominees were exceptional in one way or another, displaying an outstanding contribution to their community through fundraising or a social organization, and serving as a role model for other patients with cancer, or providing inspiration to others through their unique ability to display grace and optimism in the face of extraordinary adversity.

The Annual Hero of Hope Patient Award presents an uncommon challenge for the editors of CONQUER magazine, who are tasked with choosing which of the stories stands out among the rest as the best demonstration of a hero of hope. To say that this is a tough decision is a serious understatement: every single nominee is a true hero of hope, and all nominees together shine in their commitment to contribute to the world around them after a cancer diagnosis.

How do you choose among so many courageous displays of commitment, perseverance, and enthusiasm to help not only themselves, but even more so, to help other people who are diagnosed with cancer? We are therefore grateful to be able to offer this publication to readers of CONQUER

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Read through these testimonies of heroism and get ready to be inspired. magazine, to give voice to all these outstanding nominees and their stories.

This year, the editors of CONQUER magazine selected 6 finalists who stood out for their inspiring contributions to the people around them and their community, exuding extraordinary spirit, grace, and optimism, despite all the challenges associated with a cancer diagnosis. The final winner of the Second Annual Hero of Hope Patient Award was Maryann Wahmann (see page 78), which was announced during the Seventh AONN+ Conference, in November 2016, in Las Vegas, NV. But make no mistake—each person in this book merits being a winner of the Hero of Hope Patient Award, and each story represents a true hero of hope. Take, for example, the woman who said, “I have cancer, but cancer does not have me,” finding inspiration through her students. Or the patient who searched for outside support and earned the American Cancer Society’s first-ever Heart and Soul Award in 2016 for her involvement in the society’s activities. There is also the mother and wife with metastatic breast cancer who has raised national funds for breast cancer research, or the extraordinary oncology nurse who became a patient and ended up sharing her medication with a patient who was unable to get his cancer medication.

Then there is the tattoo artist who, while struggling with advanced cancer, was determined to use his art to fight cancer through social media; or the man who, using his own experience with cancer, made it his mission to educate people on the need for cancer screening; and the man who started an organization that contributed more than $1.5 million in grants to the fight against cancer. Another patient started support groups and devotes her time to educate patients and the community about cancer, and is an important voice in the Leukemia & Lymphoma Society.

Perhaps by now it will come as no surprise to read the story of a patient hero who can simply say, “my cancer saved my life,” which, to those who have not dealt with cancer may seem an exaggeration, but not to those whose life has been turned upside down by a cancer diagnosis. Such is the case of the patient who has become the voice of male breast cancer, another example of turning adversity into an opportunity by bringing important information to the community, using a personal blog and other media to get his message to a large audience that breast cancer is not exclusively a female plight.

And the list goes on and on, with each story revealing another hero, with his or her unique form of courage and determination to do good and spread hope to others inflicted with this devastating disease. So, read through these testimonies of heroism and get ready to be inspired.

It is probably not an overstatement to suggest that when you finish reading this collection of stories, you will have to acknowledge the incredulous resilience of the human spirit that shines from these pages: what a parade of courageous, generous, and selfless people who have turned their personal misfortune into a miracle of fortitude, compassion, and quiet activism for the benefit of humanity.

To all the people whose stories are featured in this book—each one of you is a true hero of hope.

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We ARE Never

ALONE

ELIZABETH ANN BIDA Poughkeepsie, NY

SUBMITTED BY NINA BELIS

E

ELIZABETH ANN IS A WOMAN OF EXTRAORDINARY SPIRIT AND STRENGTH. HER LOVE OF LIFE AND HER WILLINGNESS TO HELP OTHERS INSPIRES EVERYONE SHE CROSSES PATHS WITH. I AM PRIVILEGED TO PRESENT TO YOU A BRIEF ESSAY ELIZABETH ANN WROTE ABOUT HER OWN CANCER JOURNEY.

ELIZABETH ANN’S JOURNEY There is a time to live and a time to die; a time to laugh and a time to cry; a time to share and a time to listen; a time of hope and a time of mercy.

A time for cancer. On Friday, July 21, 2006, at 2:30 pm, I was told I had ovarian cancer. “Time to live” began for me decisively, right then and there. I have always been an active outdoor person. I live part time at a lake house and part time in an area close to New York City, where I receive my chemo treatments.

I have cancer, but cancer does not have me. From the minute I was told I had cancer, I started an all-out fight, first to accept it, and then to live as full of a life as I could, and beyond. Now 11 years later, I am still living forward with hope, love, and prayers.

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Elizabeth Ann with her students

I was, and still am, a very, very funny person. I have the gift of storytelling, and I love to share with everyone my amazing story of hope. Everyone needs to laugh and smile. I was caring for so many people in my life, and I was the person they could go to for all their needs. I like to help and care for people. I like to be needed. I wasn’t going to let that change because of a cancer diagnosis.

I still care for so many family members and friends who need spiritual, social, and financial support. I most enjoyed my years at Franklin D. Roosevelt High School in New York with the special education students, many of whom were from a children’s home. They were looking for hope, love, and acceptance of who they were. I was looking for hope, love, and acceptance of who I was.

Together, the students helped me see my cancer as a way for them to have someone to care for, someone to set a goal with, and someone to love them, and they return that love to me. We learned that we are never alone. We are most

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grateful for each and every day. Find something to be glad about, and live each day happily.

The ability to help others is a ministry I adopted with everyone I meet. Many times I meet a person with the thought, “How can I help you?”

I HAVE CANCER, BUT CANCER DOES NOT HAVE ME. FROM THE MINUTE I WAS TOLD I HAD CANCER, I STARTED AN ALL-OUT FIGHT, FIRST TO ACCEPT IT, AND THEN TO LIVE AS FULL OF A LIFE AS I COULD. FIND SOMETHING TO BE GLAD ABOUT, AND LIVE EACH DAY HAPPILY. “Hope” is always something I write in my notes. Heart open, prayer enters.

You see, my faith has made my cancer a blessing to me. I have had the greatest care from a friend who has been my caregiver from the first day. I know I would not have been able to continue my journey this far without her. She seldom questions my need to go and help someone, or talk to someone, or just listen and give hope to someone. She has given me hope beyond my understanding. My faith has been my greatest gift to give. You see, we are never alone.

This does not mean the journey has been easy, or that I don’t cry. I have had pain to overcome. I have prayed and been prayed for, and overcome my fears. I have accepted that sometimes the answer to my prayers is no. I continue to live forward with hope, love, and prayers. ✦

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Inspiration OUTSIDE THE Classroom AN

MICHELE BRODTMAN North Babylon, NY

SUBMITTED BY PHYLLIS DALEY

B

BECAUSE OF HER TREATMENT, MICHELE HAD NO HAIR WHEN I FIRST MET HER IN 2008 AT THE ELEMENTARY SCHOOL WE BOTH WORK AT IN EAST ISLIP: SHE TEACHES KINDERGARTEN AND I’M A PRESCHOOL ASSISTANT. WHEN I FIRST SAW HER, I THOUGHT IT TOOK A LOT OF courage to come to work without a wig. But as I have come to know Michele, as a colleague, friend, and fellow cancer survivor, I’ve seen firsthand how courage underpins everything she does—for her students, her family, and the cancer community.

Michele was first diagnosed with throat cancer and then with breast cancer, and she currently lives with a chronic form of cancer.

When she was first diagnosed, she tried to prepare for the side effects of cancer treatment, but she quickly learned that the side effects were harsher and had a greater impact on her and her family than she had imagined. At age 43, Michele is the mother of 2 teenage girls who have been living with the possibility of losing their mother for years.

In her search for outside support, she connected with American Cancer Society programs, including the Relay For Life of North Babylon, and Making Strides Against Breast Cancer at Jones Beach. Michele started running 5K races in Long Island to deal with the effects of her therapy and then joined the New York City Half Marathon as a participant in the American Cancer Society’s DetermiNation

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Michele Brodtman

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team, a program that helps survivors train for half or full marathons. For her work with the American Cancer Society, she won the first-ever Heart and Soul Award in 2016, which is presented to an individual who encompasses the mission of the society through volunteerism and event participation.

FOR HER WORK WITH THE AMERICAN CANCER SOCIETY, SHE WON THE FIRST-EVER HEART AND SOUL AWARD IN 2016, WHICH IS PRESENTED TO AN INDIVIDUAL WHO ENCOMPASSES THE MISSION OF THE SOCIETY THROUGH VOLUNTEERISM AND EVENT PARTICIPATION. Michele has the support of many friends and colleagues, including me.

When I was diagnosed with breast cancer in 2011, I had a double mastectomy and 1 year of chemotherapy between treatments. I leaned on Michele constantly, even when I was out of work for 6 months, and I was happy to support her in her own journey.

To this day, we check in on each other and lift each other’s spirits. When I think I can’t do something, or I’m having a difficult time with my treatment, I gain support from Michele. When I pass her in the hallway at work, she’ll give me a smile and a friendly greeting, reminding me that it’s possible to be positive even in the face of cancer, which makes me feel more courageous. She is a true inspiration. ✦

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A

MotherAND WifeWHO DOESN’T QUIT SANDY CASSANELLI Glastonbury, CT

SUBMITTED BY CRAIG CASSANELLI

L

LIKE MANY WOMEN, MY WIFE SANDY WEARS MANY HATS: SHE’S MY LIFE AND BUSINESS PARTNER, A WONDERFUL MOTHER TO OUR 14- AND 10-YEAR-OLD DAUGHTERS, A FITNESS JUNKIE, AND A WOMAN OF

faith. In recent years, she’s also become the manager of a growing nonprofit organization, a champion of cancer research and advocacy, and a voice for the metastatic breast cancer community.

Most important, though, Sandy is a survivor. In May 2013, Sandy found a lump in her breast and immediately had it checked. Tests revealed that at age 37, years before women usually start regular mammograms, she had stage III breast cancer. She underwent a double mastectomy, 28 days of radiation, and 8 rounds of chemotherapy.

One of the hardest parts of that first round of treatment was telling our daughters. They were initially scared, but children are always surprisingly resilient. They even help out around the house when we need help picking up the slack—what more could a parent ask for? Our employees took the news well, too, helping us adapt to a challenge that could have drastically impacted our business.

After her treatment, we were all relieved to learn that Sandy’s cancer was in remission. We believed she could return her attention to juggling her

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Sandy with her family

many roles, which had grown to include fundraising and advocacy.

She had become actively involved in the Susan G. Komen Race for the Cure, raising nearly $25,000 for the foundation in 2013 and 2014. She also was the cochair of the first Massachusetts Pink Party, which raised funds in October 2015 for the Massachusetts affiliate of Susan G. Komen for the Cure.

Then, in 2015, after complaining of chest bone pain and a series of tests, she learned that her fight with cancer was far from over. Her scans revealed she had metastatic (stage IV) breast cancer that had spread to her liver. We were devastated. Although metastatic breast cancer can be treated, it can’t be cured, at least not yet. Upon learning she had metastatic breast cancer, Sandy decided she was going to get her treatment with Eric P. Winer, MD. Dr. Winer is Director of the Breast Oncology Program at Dana-Farber Cancer Institute and the Breast Program Leader in the Dana-Farber/Harvard Cancer Center in Boston, MA. Dr. Winer is one of the country’s foremost experts on metastatic breast cancer, and Sandy has vowed to help him continue his research.

Sandy, along with her best friend Heidi Grise, started the Breast Friends Fund (in association with Dana-Farber’s The Jimmy Fund) to raise money for Dr. Winer’s research on metastatic breast cancer.

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Sandy (on right) with her best friend Heidi

ALL THE MONEY RAISED BY THE BREAST FRIENDS FUND GOES TO FUNDING METASTATIC BREAST CANCER RESEARCH, WHICH IS A POINT OF PRIDE FOR SANDY AND HEIDI. BREAST FRIENDS FUND HAS RECENTLY COMMITTED TO RAISING $100,000, ALL OF WHICH WILL GO DIRECTLY TO METASTATIC BREAST CANCER RESEARCH AT DANA-FARBER.

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The organization hosts several fundraisers each year, including a Taste the Cure wine-tasting event that raised $30,000 this year for Dana-Farber’s metastatic breast cancer research lab. All the money raised by the Breast Friends Fund goes to funding metastatic breast cancer research, which is a point of pride for Sandy and Heidi. Breast Friends Fund has recently committed to raising $100,000, all of which will go directly to metastatic breast cancer research at Dana-Farber.

SANDY BRINGS THE SAME PASSION AND ENERGY TO HER WORK WITH HER ORGANIZATION AS SHE DOES WITH EVERYTHING ELSE IN HER LIFE. SHE FEELS A SENSE OF URGENCY IN SUPPORTING DR. WINER’S EFFORTS, ALTHOUGH IT’S NOT JUST SANDY AND OUR FAMILY WHO DESPERATELY NEED THIS CURE: THE ENTIRE WORLD IS WAITING FOR IT. Sandy brings the same passion and energy to her work with her organization as she does with everything else in her life. She feels a sense of urgency in supporting Dr. Winer’s efforts, although it’s not just Sandy and our family who desperately need this cure: the entire world is waiting for it.

In the meantime, Sandy’s treatment consists of oral medications, including chemotherapy, that keep the cancer at bay. She checks in with her oncologist every 2 or 3 months, and gets new scans every 6 months. She’s keeping her head in the game, but we all look forward to the day when she and thousands of other women can be cured—not just treated—of metastatic breast cancer.

Sandy won’t wait on the sidelines for that day, of course. She’ll remain on the frontlines of fundraising and advocacy. She’ll continue to help me run our business and our household, raise our daughters, and enjoy life to the fullest—until the day she gets to hang up her “patient with cancer” hat for good. ✦

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Generous ONCOLOGY Nurse

A

DONNA CLARK, RN, BSN, OCN Pensacola, FL

SUBMITTED BY DENISE D. GATES-BAKER, RN

I

I MET DONNA CLARK AT AN ONCOLOGY NURSING SOCIETY LEADERSHIP WEEKEND CONFERENCE IN 2014.

WE CONNECTED AND EXCHANGED INFORMATION AS NURSES NETWORKING AT A CONFERENCE OFTEN DO, BUT SOMETHING WAS DIFFERENT ABOUT OUR MEETING. In fact, I suspect it was a divine connection, because over the next few months we maintained a close correspondence. How often do you strike a relationship with someone who lives about 350 miles away, and then when you talk, it’s as if you just spoke that very same day?

When I spoke with Donna after about a year of diminished communication, I learned that she had been diagnosed with cancer. I thought I should have been there, to go through the experience with her, but I had my own issues to contend with at the time.

For me, Donna is a very special and courageous person, who deserves to be considered a hero. She does things for the patients she cares for that you only hear about but not really experience. For example, she told me about a situation she had with one of her patients who was unable to get his cancer medication: because he needed the medication but couldn’t get it, she shared her own medication with

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Donna Clark

DONNA HAS BEEN A NURSE FOR MORE THAN 20 YEARS. SHE HAS ACCOMPLISHED MANY THINGS DURING HER NURSING CAREER, INCLUDING WRITING ON BEHALF OF OTHER NURSES TO HELP THEM GET SCHOLARSHIPS TO ATTEND CONFERENCES.

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him. This may be considered ethically wrong for some professional people, but what should you do as a nurse trying to help others? You improvise, even by sharing your own treatments.

DONNA DESCRIBED TO ME A SITUATION SHE HAD WITH ONE OF HER PATIENTS WHO WAS UNABLE TO GET HIS CANCER MEDICATION: BECAUSE HE NEEDED THE MEDICATION BUT COULDN’T GET IT, SHE SHARED HER OWN MEDICATION WITH HIM. In May 2015, Donna completed the rounds of chemotherapy and radiation.

She went through chemotherapy and was treated by the nurse whose mother she had treated years before, using the same chemotherapy medications she later was getting herself.

Donna has been a nurse for more than 20 years. She has accomplished many things during her nursing career, including writing on behalf of other nurses to help them get scholarships to attend conferences.

She is a loving, kind, and generous person, who, after many years of silent suffering, has selflessly given so much of herself to helping others in need. ✦

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Connecting THROUGH Ink

CLINT CUMMINGS Mansfield, TX

SUBMITTED BY DANIELLE RIPLEY-BURGESS

G

GROWING UP, CLINT CUMMINGS WAS KNOWN AS A BIT OF A TROUBLEMAKER. WHEN HE WAS 15, HIS FATHER GAVE HIM HIS FIRST TATTOO MACHINE, THINKING IT WOULD KEEP HIM OUT OF TROUBLE AND GIVE HIS SON SOMETHING CONSTRUCTIVE TO DO. Little did he know that gift would spark something for Clint, who’s now a well-known specialist in tattoos and the owner of Dallas-area Sparrows Tattoo Company, which has been featured on Spike TV’s “Ink Master” and “Tattoo Nightmares: Miami.” For Clint, tattooing is the ultimate form of self-expression: he describes himself as an artist and a person who wears his emotions on his sleeve.

That was challenged when he learned at age 35 that he had cancer. Clint had no family history of the disease, but knew something was wrong when he began to have rectal bleeding, severe constipation, and pain while he was traveling overseas. A colonoscopy revealed the cause: stage IV colorectal cancer. He immediately underwent surgery and began treatment.

A passionate voice for the tattoo community on social media, Clint debated whether he should keep his health issues private, to protect himself and his family.

He decided against this, and in January 2016 he let his 50,000 Instagram followers in on his diagnosis, and explained that he wasn’t embarrassed about what was happening to him.

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Clint Cummings

He posted photos from his hospital room with status updates on how he felt and what he was going through. His fans did not disappoint as he stayed honest and authentic about his colostomy, chemotherapy, and surgery—an outpouring of loving and supportive comments flooded his Instagram feed.

This is how I first met Clint. One of his many fans tagged the nonprofit organization Fight Colorectal Cancer in a powerful video Clint posted in which

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Clint Cummings

he explained his cancer diagnosis. As a two-time colon cancer survivor myself who has also faced the disease as a young adult, I reached out to Clint on behalf of Fight Colorectal Cancer, where I have been the Director of Communications since 2013.

Not content to battle his cancer alone, Clint considered ways he could further his mission of positively impacting others with this illness. With support from Fight Colorectal Cancer and the tattoo community, he created the first-ever Art

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of Heroes event, which took place at his tattoo shop in June 2016. Famous tattoo artists donated artwork and their services to support the family-friendly superhero-themed event. Fans, families, and friends attended to learn about colorectal cancer and raise funds to support Clint. After the success of this event, he hopes Art of Heroes will grow into an annual event in tattoo shops across the country.

FAMOUS TATTOO ARTISTS DONATED ARTWORK AND THEIR SERVICES TO SUPPORT THE FAMILYFRIENDLY SUPERHERO-THEMED EVENT. FANS, FAMILIES, AND FRIENDS ATTENDED TO LEARN ABOUT COLORECTAL CANCER AND RAISE FUNDS TO SUPPORT CLINT. AFTER THE SUCCESS OF THIS EVENT, HE HOPES ART OF HEROES WILL GROW INTO AN ANNUAL EVENT IN TATTOO SHOPS ACROSS THE COUNTRY. Clint is a true hero of hope: he faced stage IV colorectal cancer and all the physical, emotional, and financial challenges that come with it, yet he found the strength to think more about others than about himself.

He wants to be a hero. His strong, passionate, positive voice has created ripples of inspiration in the tattoo and cancer communities, providing those inspired by his struggle with a place to turn to for invaluable resources and support.

When I think of heroism, I don’t just think of the superheroes that Clint draws and tattoos onto his clients. I think of a man being open about his cancer with tens of thousands of strangers, because he knows that some of them may need the courage to battle the very same foe. ✦

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Sisterly LOVE SHARON DANN

SUBMITTED BY HER SISTER, ELLE (LESLE ELLEN) SHEEDY

A

AMONG OUR SIBLINGS, SHARON AND I WERE CLOSEST IN AGE, AND WE DID EVERYTHING TOGETHER. WE WATCHED OUT FOR EACH OTHER AND HAVE ALWAYS BEEN BEST OF FRIENDS, SHARING FRIENDS AND MANY PRECIOUS MEMORIES. As much as I enjoyed growing up with Sharon, I also felt protective of her; she has been developmentally disabled her entire life. We believe she sustained brain damage in the Broca area, the brain region where the frontal lobe controls language comprehension, the ability to interpret the actions of others, and speech. Because of this, Sharon has always struggled to read and write, discern other people’s character, or communicate when something is physically amiss with her body.

DESPITE THESE UNIQUE CHALLENGES, SHARON HAS NOT LOST THE SHINE IN HER BRIGHT BLUE EYES, OR THE FAITH IN HER HEART. That came into play a year and a half ago when our mother took Sharon to the doctor for some tests. Her doctors found she had colon cancer that had spread to other tissues, which meant she could not have surgery to remove the tumor.

Sharon takes chemotherapy orally, which is physically devastating to her. She was particularly shocked when her once thick, beautiful hair began to fall out.

Despite these unique challenges, Sharon has not lost the shine in her bright blue eyes, or the faith in her heart. As a family, we trust in God and remember that

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Sharon Dann

one day Sharon will be physically whole again. Until then, she’s living as normally as she can.

I’m grateful that Sharon and I enjoy a close sisterly bond. Although she lives in Florida with our mother, and I live in Idaho, we speak on the phone regularly and see each other in person whenever we can. We focus our limited time together on faith and fellowship, not on her cancer. Sharon is devoted to spending as much time as she can praying, reading the scriptures with our mother, and attending a local Bible study to renew her soul and bring God’s light to her mind.

Sharon and I, her friends and family, believe she is healed, as the scripture teaches. We all know that Sharon will always be with us, now and for eternity. Her belief and faith are the source for her strength. ✦

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TAKE

Control OR BE

Controlled HENRY “HANK” DENESKI Union, OH

SUBMITTED BY LILIAN DENESKI

H

HENRY “HANK” DENESKI, AN 11-YEAR SURVIVOR OF STAGE IV, INOPERABLE SQUAMOUS-CELL CARCINOMA AT THE BASE OF THE TONGUE, URGES OTHER PATIENTS WITH CANCER TO “TAKE CONTROL OR BE CONTROLLED.” As founder of Western Ohio Oral, Head and Neck Cancer Support, coordinator of 5 free oral cancer screening programs for the uninsured and disadvantaged people in western Ohio, director of an extensive awareness and education program, Hank’s volunteering work is raising awareness and saving lives.

LOSING HIS CAREER AS A SALES MANAGER, HANK MADE IT HIS MISSION TO EDUCATE OTHERS, INCLUDING DENTAL AND MEDICAL PROFESSIONALS; PROVIDE PEOPLE THE OPPORTUNITY TO BE SCREENED FOR CANCER; AND SUPPORT SURVIVORS AND THEIR CAREGIVERS.

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Henry “Hank” Deneski

Oral, head and neck cancer is a debilitating type of tumor that Hank calls an “orphan cancer,” because it is not as well-publicized as many other cancers. It can require major, disfiguring surgery, cause loss of the ability to eat or speak, and has long-lasting side effects—a “new normal” in living.

Losing his career as a sales manager, Hank made it his mission to educate others, including dental and medical professionals; provide people the opportunity to be screened for cancer; and support survivors and their caregivers who watch their loved ones go through hell.

Diagnosed in 2005, Hank’s doctor advised that surgery would require removal of his tongue, esophagus, and larynx, making recovery nearly impossible. Hank never asked, “Why me?” Rather, he maintained a “What’s next, doc?” steadfast attitude.

During 4 years, he had 48 hours of cisplatin-based chemotherapy infusions; 84 radiation treatments (he had prostate cancer in 2006); 15 months being on a feeding tube; ongoing xerostomia, “chemo brain,” neuropathy, and other side effects that continue to this day. He also had emergency surgery for Ludwig’s angina; total extraction of all his teeth—removal of part of the jawbone, implants, oral prostheses, and 50 hyperbaric dives followed. But Hank continues to fight for others, and for himself.

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In August 2006, Hank attended the Support for People with Oral and Head and Neck Cancer (SPOHNC) Conference in New York. He learned about the lack of financial support from insurance companies for many treatments (dental insurance versus medical insurance), and gained information about alternative effective treatments for related side effects.

SEEING THE NEED FOR ACCURATE INFORMATION, REGULAR SCREENINGS, AND HEALTHCARE SUPPORT SYSTEMS, HANK TOOK IT UPON HIMSELF TO MAKE SURE THAT PEOPLE IN MONTGOMERY COUNTY WERE GIVEN THESE OPPORTUNITIES, BECAUSE NO OTHER ORGANIZATION WAS THERE TO HELP. Hank was invited to the inaugural LIVESTRONG Summit in Austin, Texas, in 2006, and he brainstormed survivors’ needs for information throughout their cancer journeys. Delegates were challenged to write mission statements they would incorporate into their home communities. Here are the 2 statements that Hank wrote: 1. Create an oral, head and neck cancer support program for survivors and caregivers in Dayton.

2. Provide free oral cancer screenings to the underserved in Dayton.

Seeing the need for accurate information, regular screenings, and healthcare support systems, Hank took it upon himself to make sure that people in Montgomery County in Ohio were given these opportunities, because no other organization was there to help.

Cancer survivors in Dayton needed a support system, and Hank answered by creating the chapter of SPOHNC in Dayton in 2007.

This 9-year-old self-driven SPOHNC chapter has approximately 100 members; they meet monthly, hearing speakers on relevant topics and issues, and assist and support each other. In 2011, Hank was instrumental in helping to establish a similar group in Cincinnati.

Serving and educating the disadvantaged population in the area resulted from Hank’s diligent persistence. In April 2011, Elizabeth Place in Dayton had the first free screening for oral, head and neck cancer. Other groups in Dayton have since followed suit, offering free screening, including the Levin Family Foundation,

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the Dayton VA Medical Center, a local dentist’s office, the Life Enrichment Center, and others.

Hank has support for materials from national foundations, including the Oral Cancer Foundation, the Head and Neck Cancer Alliance, the LIVESTRONG Foundation, and SPOHNC, with local businesses providing supplies, and volunteer doctors and dentists performing free oral screenings.

Before 2007, Dayton’s disadvantaged residents had nowhere to turn for personal support and free screenings. To date, 1000 free screenings have been completed; of these, 75 people were given referrals for further investigation of the area, and some were subsequently diagnosed with cancer and were referred for treatment.

Head and neck cancer is the 6th most common cancer in the world and the 8th in the country. It is more common in men than in women and is often associated with smoking. This, combined with the rise in HPV infection in the country, indicate a need to continue the screening efforts undertaken by Hank, which he has expanded to a 100-mile radius from Dayton. ✦

HANK IS INVOLVED IN MANY OTHER ACTIVITIES, INCLUDING: • Participating in Relay for Life for 8 years; Committee Chair for 5 years; primary speaker at Relay for Life functions and luncheons • Presenter at Lunch and Learn Sessions at the VA Medical Center, Sinclair College Dental Clinic, and Life Enrichment Center • Organized St. Peregrine Cancer Ministry at the Church of the Transfiguration in West Milton, Ohio, providing free cancer kits with information and support for patients with any type of cancer • Holds the annual Healing Prayer Service

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ST O M P THE

Monster SETH GRUMET Marlboro, NJ

SUBMITTED BY ELIZABETH MARTINEZ

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BEFORE MAY 18, 2010, SETH THOUGHT OF HIMSELF MAINLY AS A DEVOTED HUSBAND, FATHER OF 3, A HARD-WORKING BUSINESS OWNER, AND IRONMAN TRIATHLETE. THESE PRIORITIES CHANGED WHEN HE FIRST HEARD THE WORD “TUMOR” FROM HIS DOCTOR.

He had been training to compete in his second Ironman Triathlon, claiming to be in the best shape of his life, when he first started feeling short of breath. His doctor told him he had allergies, then a pulmonologist thought he had pneumonia. He finally learned about the fist-sized tumor in his chest when the pulmonologist, just to be sure, ordered a chest x-ray and a CT scan.

He had multiple biopsies, which confirmed the diagnosis—non-Hodgkin lymphoma. The tumor in his chest was the size of an orange, and it was growing into his right lung on one side and the vessels of his heart on the other.

The transition from diagnosis to treatment, and all the personal difficulties that came with it, ultimately inspired Seth to start STOMP the Monster, a nonprofit organization that provides financial support and other support services to patients with cancer and their families during treatment. The name was inspired by his 10-year-old middle daughter, Maddy, who called his cancer “the monster under the floorboard.” She told him, “you just have to stomp it out!”

Unfortunately, this particular monster would prove to be difficult to stomp out. Seth had several bone marrow biopsies and dozens of other tests before starting chemotherapy in June 2010. Although the initial scans after treat-

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Seth Grumet

ment came back clear, the non-Hodgkin lymphoma returned just 4 weeks later.

The next treatment was an autologous stem-cell transplant. Seth was in remission only for a few months before the cancer returned. He had more rounds of chemo until a new drug was able to shrink the cancer enough to prepare him for a transplant with stem cells donated by his sister. After the transplant, Seth’s scans came back clear: the monster had been stomped.

But even after a successful transplant, you need a full year to recover, because the body gets beat up, Seth says. When you receive treatment for cancer, he says, there’s no consistency, so it’s hard to return to normal.

Seth knew he was fortunate to have an extensive support system, including family and friends who would deliver food to his home and offer rides to treatment and free babysitting. He met people during chemotherapy who were far

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less fortunate than he, in need of rides to treatment, care for their families and children, and even help paying their bills.

Knowing firsthand how important focusing one’s energy on fighting cancer is, Seth decided to take action. He started the nonprofit organization STOMP the Monster to help alleviate people of these distracting facets of life.

THE TRANSITION FROM DIAGNOSIS TO TREATMENT, AND ALL THE PERSONAL DIFFICULTIES THAT CAME WITH IT, ULTIMATELY INSPIRED SETH TO START STOMP THE MONSTER, A NONPROFIT ORGANIZATION THAT PROVIDES FINANCIAL SUPPORT AND OTHER SUPPORT SERVICES TO PATIENTS WITH CANCER. According to Seth, it got started when they helped a woman who was working 2 jobs and going through radiation for breast cancer. She had to skip treatments, because she had to choose between putting food on the table for her grandchild or taking care of herself. So the organization gave her a grant, so she wouldn’t have to keep having to choose.

In 2015 alone, STOMP the Monster provided nearly $400,000 in financial grants (they call them “stomps”) to 810 patients with cancer. Since its inception, the organization has given a total of $1.5 million in grant funds, which are raised through numerous fundraisers throughout the year.

They have an annual STOMP the Monster 5K and festival, fun runs, an amazing gala, and more, while more than 90 cents of every dollar raised goes directly to assisting patients with cancer and their families. Ultimately, according to Seth, the financial assistance pales in comparison to the peace of mind that STOMP the Monster is able to afford patients.

Seth is a true hero of hope. He has demonstrated an extraordinary spirit, grace, and optimism through his cancer diagnosis and his outstanding contributions to the community through his endless efforts of fundraising, serving as a positive role model, and giving selflessly to others during his own fight with cancer and through his survivorship. ✦

For more information visit STOMP the Monster at www.stompthemonster.org.

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Finding

STRENGTH THROUGH

Small Actions DELA HIGHT

Oklahoma City, OK

SUBMITTED BY LARA GASTON, RN

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THERE IS NOTHING BIGGER IN A PATIENT’S LIFE THAN WHEN HE OR SHE RECEIVES A DIAGNOSIS OF CANCER, WHICH MAGNIFIES ALL THE LITTLE THINGS IN LIFE. BUT, AS MOTHER TERESA SAID, “BE FAITHFUL IN SMALL THINGS, BECAUSE IT IS IN THEM THAT YOUR STRENGTH LIES.”

Since her diagnosis of acute lymphocytic leukemia associated with precursor B-cell in March 2009, Dela has proved that it is in the small actions that we can make the biggest impacts. Dela battles neuropathy, “chemo brain,” fatigue, and yet you will rarely hear her focus on these things; instead she uses her energy to help others and raise funds for cancer research.

Her greatest talent is using her abilities to make a difference in the lives of others. She cooks for the cure, she sews for the cure, she supports for the cure, and she continually searches for ways to help the community of patients with blood cancer.

Beginning with her diagnosis 7 years ago, Dela started attending a blood cancer support group. Although she began for herself, she continues to attend the

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Dela Hight

support group to help others. She talks to others with sincere grace and kindness, offering tangible hope and providing resources for their fears. She also provides her contact information to people for the moment when someone may be flooded with questions or concerns.

The support group is just one example of Dela’s work. Her work with the Leukemia & Lymphoma Society (LLS) is vast and has made a huge impact. She has helped with programs such as Patient Services, School and Education, Team in Training, and Light the Night. She takes the time to speak with schools and with

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cancer survivors. All this has led to her receiving honors such as the “Volunteer of the Year” and “Honored Hero.”

Dela truly understands it is the small details that make the biggest impact through her work with LLS. Her Light the Night team—TEAM Hight’n Awareness—has been active for the past 7 years and has raised $17,000 for the society.

They were the top team in Oklahoma in 2015.

SHE COOKS FOR THE CURE, SHE SEWS FOR THE CURE, SHE SUPPORTS FOR THE CURE, AND SHE CONTINUALLY SEARCHES FOR WAYS TO HELP THE COMMUNITY OF PATIENTS WITH BLOOD CANCER. Her secret? Her famous, award-winning strawberry cakes, with more than 165 being made from scratch over time. In 2015, she focused on these cakes and sold 132 to support LLS. Another example of Dela’s focus on the small details is her creative use of old T-shirts that were not being used. When she realized that no one wanted them, she took them home and turned them into lap blankets for newly diagnosed patients. She hand-delivers them to hospitals and infusion spaces, where you can find her often.

When she is able, she visits patients. She provides comfort and support, even making up her own business card to hand out for those who may need her.

Through her “First Connection” training at LLS, she has equipped herself with all the information she can to help them through every step of the journey.

In the past couple of years, she’s served as a member of the Mercy Oncology Advisory Group—a group consisting of patients and their loved ones who have helped to guide the design and building of Mercy’s new cancer center in Oklahoma City. She has provided insight into the patient experience and ideas on where cancer care could be improved in the future.

As if all this work isn’t enough, Dela also advocates for LLS by wearing T-shirts in public, to start conversations, and by running 2 Facebook pages she created, to help her reach and support other survivors. She offers a wealth of information for those who need it.

Her body may be weaker than it once was, but her strength lies in taking advantage of the small things she can do. ✦

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Cancer SAVED

My Life

BY LINDA JOHNSON Montague, CA

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FICTIONAL PORTRAYALS OF CANCER ON TELEVISION AND MOVIES OFTEN GET A LOT OF THINGS RIGHT: THE INITIAL CONFUSION AND PANIC AT LEARNING THE DIAGNOSIS, THE WAY YOUR LIFE GETS PUT ON HOLD FOR

treatment, chemotherapy’s ability to knock you down and out. But when it comes to my cancer story, the truth is stranger than fiction.

I live in a rural community in northern California, where I’ve been active most of my life with my husband and 2 daughters, both of whom are grown and live on their own. In July 2013, I found a lump in one of my breasts and called my doctor right away. My biopsy came back 3 days later, revealing the worst: I had stage IIA breast cancer.

Life was a whirlwind after that. I didn’t have time or proper transportation to visit one of the bigger cancer centers more than 1 hour away, so I had surgery at my local hospital 1.5 weeks after my diagnosis. I also started with an oncologist who is more than an hour drive south—my town doesn’t have an oncology practice.

There, I learned that my cancer cells contained estrogen and progesterone receptors and too much HER2, a growth-promoting protein. Because I had triplepositive breast cancer, I needed treatment with Herceptin (trastuzumab), a targeted therapy for this kind of cancer, in addition to chemotherapy every 3 weeks, and 48 radiation treatments. This regimen took a major toll on my time, finances, and

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Linda Johnson

ability to work, which put my family under a financial strain. Little did I know what was coming next.

During a routine x-ray, my radiation oncologist spotted an aortic aneurysm.

About 90% of people with an aortic aneurysm don’t survive—this condition is hard to catch early and even harder to treat. I couldn’t have cardiac surgery right away, because my cancer treatment had weakened me, so I waited 9 months for

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surgery on an aneurysm that could have dissected at any time. It was on my mind every single day. Finally, in early 2013, I had the aneurysm surgically repaired.

The irony isn’t lost on me: my cancer saved my life. Now 3 years since my initial diagnosis, I’m doing the best I can to manage the side effects of treatment, including trying to recover financially.

THE IRONY ISN’T LOST ON ME: MY CANCER SAVED MY LIFE. NOW 3 YEARS SINCE MY INITIAL DIAGNOSIS, I’M DOING THE BEST I CAN TO MANAGE THE SIDE EFFECTS OF TREATMENT, INCLUDING TRYING TO RECOVER FINANCIALLY. I MAY NOT KNOW HOW I’LL GET THROUGH EACH DAY, BUT I KNOW I WILL GET THROUGH IT. Few organizations exist to help with financial problems once a patient with cancer is finished with treatment. But patients in economically disadvantaged areas like mine often need help with a host of things: the cost of treatment, transportation to and from the hospital, and help with the bills that don’t stop just because you have cancer.

Although it’s been one challenge after another for me, I’ve leaned on my daughters and husband for support. They have helped me maintain a positive attitude. I may not know how I’ll get through each day, but I know I will get through it.

When I tell others my story, with all its twists and turns, I remind them that positivity is a patient with cancer’s best friend. I encourage others to speak up if a friend or a loved one is facing cancer: offer to take them to doctors’ appointments or to lunch. Accompany them to a support group. Talk about normal, everyday things. The important thing is not to shy away from talking about cancer just because it’s hard to face head-on.

I also encourage patients with cancer who find themselves in need of physical, financial, or emotional support not to ask “Why me?” Instead, ask “What can I do?” Like me, you just may be surprised by the answer. ✦

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Voice OFMale

THE

BREAST CANCER AMBROSE KIRKLAND Tallahassee, FL

SUBMITTED BY ANGELA AND ADRIANNE KIRKLAND

A

AMBROSE IS A HERO BECAUSE OF HIS FIGHT WITH CANCER AND HIS PERSEVERANCE. IN NOVEMBER 2001, AMBROSE WAS DIAGNOSED WITH BREAST CANCER. HE AND HIS MOM WERE ON SEPARATE PHONES AT HOME

when the doctor called, and when the doctor said the word “malignant,” Ambrose locked eyes with his mom. In addition to her pain, he also saw his entire life reflected in her eyes, from birth up to that moment.

He saw a mother’s love for her child, and he will always remember the look she gave him. Ambrose is the face of male breast cancer in Tallahassee, and as a 15-year cancer survivor he does not know the meaning of the word “quit.”

He is often the only man in a breast cancer event in our city, and has often traveled to other events to help spread the word about male breast cancer.

He is the eleventh child of the late Ambrose Jr. and the late Lora Kirkland; he has 5 brothers and 4 sisters, and is acting as the caregiver to his youngest sister, Reba.

Ambrose is the author of 2 published books, Mama I Found a Lump and Mama’s Journey. He is featured in the award-winning documentary “Pink and Blue: Colors of Hereditary Cancer,” as well as the documentaries “Men Have Breasts Too” and “Times Like These.”

He is the host of 2 Internet radio shows on ipmnation.com, which are called “The Ambrose Kirkland Show” and “Get Your Laugh On.” Ambrose writes a monthly blog for HEALmagazine.com called “Kirkland’s

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Ambrose Kirkland

AMBROSE IS THE FACE OF MALE BREAST CANCER IN TALLAHASSEE, AND AS A 15-YEAR CANCER SURVIVOR HE DOES NOT KNOW THE MEANING OF THE WORD “QUIT.”

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Ambrose Kirkland

Korner.” He participates in every Relay for Life walk and Making Strides Against Breast Cancer walks held each year in his area.

He is a member of the Greater Mt. Zion Primitive Baptist Church, under the spiritual guidance of Pastor Clinton Smith.

He takes every opportunity given to him to spread awareness of male breast cancer, while also remaining active in women’s breast cancer issues. Ambrose is indestructible. He believes knowledge is power. ✦

HE IS OFTEN THE ONLY MAN IN A BREAST CANCER EVENT IN OUR CITY, AND HAS OFTEN TRAVELED TO OTHER EVENTS TO HELP SPREAD THE WORD ABOUT MALE BREAST CANCER.

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A

Rare CANCER DIAGNOSIS Leads TO A NEW Foundation CINDY LOVELACE Old Hickory, TN

SUBMITTED BY GENE LOVELACE

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WHEN MY WIFE, CINDY LOVELACE, WAS DIAGNOSED WITH BREAST CANCER IN 2005, SHE FACED ONE OF THE WORLD’S MOST PREVALENT AND STUDIED CANCERS. MANY WOMEN IN THE UNITED STATES WILL BE DIAGNOSED WITH BREAST CANCER DURING THEIR LIFETIME, AND THERE IS MUCH RESEARCH ON BREAST CANCER.

But for her second bout with cancer in 2011, Cindy—a Nashville radio marketing director and mother of 2—was diagnosed with a rare cancer that is not well understood.

While visiting family in 2011, Cindy broke a bone in her foot. Blood clots subsequently formed in her leg and spread to her lungs. A lung scan to assess the blood clots revealed a suspicious shadow in her abdomen. After months of inconclusive tests, an endoscopic ultrasound showed a tumor on her neuroendocrine cells, which can be found in the lungs, gastrointestinal tract, liver, and pancreas, and help regulate many body functions.

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Cindy Lovelace

Neuroendocrine tumors (NETs) are often benign, but Cindy’s were not. She had cancer again. She never had symptoms.

NETs are rare, and therefore this type of cancer does not have the funding and media attention of more common cancers. Cindy’s doctor believed that her tumor was in the upper section of her stomach, but surgery showed that it was in the tail of the pancreas, making it easier to resect (remove by surgery).

They removed half of her pancreas and spleen, but it wasn’t until hearing that Steve Jobs passed away from neuroendocrine cancer that Cindy searched online for more information on this rare cancer. Her search led her to Dr. Eric Liu, a

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surgeon and neuroendocrine cancer specialist at Vanderbilt University Medical Center in Nashville at the time (he has since moved to Rocky Mountain Cancer Centers in Denver).

Dr. Liu explained that these tumors are small and slow-growing, so they often don’t show up on standard scans. He also explained the elusive nature of the cells, showing different symptoms, or sometimes no symptoms at all, based on their location in the body and the hormones they secrete. This makes diagnosis very tricky.

Using a new type of CT scan called Ga-68 dotatate PET/CT specific for diagnosing NETs, Dr. Liu found 2 tumors in Cindy’s liver that didn’t appear on MRI.

CINDY AND DR. LIU TEAMED UP TO FOUND THE HEALING NET FOUNDATION, A NONPROFIT ORGANIZATION FOCUSED ON PROVIDING NET EDUCATION AND RESOURCES TO DOCTORS AND THE MEDICAL COMMUNITY AT LARGE. One of the tumors was removed, and she now receives a monthly octreotide injection to slow and reduce the growth of subsequent tumors that have since appeared in her liver.

In the summer of 2013, Cindy and Dr. Liu teamed up to found the Healing NET Foundation, a nonprofit organization focused on providing NET education and resources to doctors and the medical community at large, while giving patients hope and encouraging them to connect their physicians to these resources.

According to Cindy, other organizations are already doing great advocacy and fundraising. The void we need to fill is in educating frontline physicians. But when she walked into her oncologist’s office with this diagnosis, her doctor didn’t know what to tell Cindy, because she had no information on it. So the goal of the Healing NET Foundation is to change that.

With help from Dr. Liu and other experts in the field, in 2015 the Healing NET Foundation created a physician resource booklet titled “Neuroendocrine Tumors: A Primer for Healthcare Professionals.”

In early 2016, the foundation hosted its inaugural international summit, in partnership with the Association for Value-Based Cancer Care. The summit brought together leading neuroendocrine cancer specialists from across the United States and Europe.

The goal was to bring together leading researchers and clinicians to examine how patients with NETs are diagnosed and treated, according to Cindy. We have to spread the word to the medical community at large, she says. ✦

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Laughter IS THE BestMEDICINE SUSAN McDEVITT Madison, CT

SUBMITTED BY RILEY McDEVITT

J

JUNE 12, 2011, WAS TO BE A DAY OF CELEBRATION FOR SUSAN AND HER FAMILY; IT WAS ONE OF HER SON’S 20TH BIRTHDAY. AS A MOTHER OF 7—4 BOYS AND 3 GIRLS— THESE DAYS WERE VERY SPECIAL.THE YOUNGEST CHILD WAS UNDER AGE 2, THE OLDEST WAS 25. LITTLE DID SHE KNOW THAT THIS DAY WOULD TURN OUT TO BE LIFE-CHANGING. She woke up that Sunday morning with a pain in the right side of her abdomen.

She asked her husband to stay home with the children and continue getting ready for the events of the day, while she drove herself to the hospital, thinking it was something minor and she would be home in no time.

The doctors said it was probably appendicitis, but the CT scan told a different story. There was a large mass in her colon, which caused an infection in the appendix. With the events of the day and her son’s birthday on her mind, Susan wanted to go home and return the next day, but the doctor explained that was not possible. She was told she was going straight into emergency surgery, because the mass had caused an infection, and it was leaning on the appendix and was going to rupture. Because of the large size of the mass, the doctors were confident she had cancer. So it was going to be her son’s birthday party, but instead she had just been told she had cancer!

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Susan with her 7 children

This was several cancers, chemotherapy, and 9 surgeries ago. The chemo caused Susan severe and permanent nerve damage in both feet, but this doesn’t stop her. In addition, genetic testing showed that Susan has Lynch syndrome, an inherited mutation that increases the risk (by up to 80%) for cancer in 13 organs.

As a mother of 7 children, she was not going to take this lying down.

Susan is one of the strongest advocates and leaders who is raising awareness to the Lynch syndrome in the country. This rare condition is severely underdiagnosed in the United States. Approximately 1 in 400 people are at risk for carrying this mutation, but only 5% of the US population have been diagnosed with the disease, so she knew she had to do something.

Susan is now the Executive Director of Lynch Syndrome International (LSI).

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She is extremely passionate about helping others and embraces her role with love and a deep sense of caring. She is determined to raise awareness and save lives.

She has also created an annual event called “Comedy For Cancer.” It is a major fundraiser for the LSI, which has become a huge success. Her motto is “Laughter Is the Best Medicine”—what could be better? The event is growing every year, and she has engaged well-known comedians who use laughter as a way to achieve the ultimate goal of saving lives.

IN THE 5 YEARS SINCE HER DIAGNOSIS, SUSAN HAS BECOME A LEADER AND A TEACHER IN MANY WAYS. SHE INSPIRES OTHER PEOPLE TO ALWAYS LOOK BEYOND THEMSELVES, REGARDLESS OF THEIR OWN LIFE SITUATION. “YOU CAN ALWAYS DO GOOD FOR OTHERS,” SHE SAYS. Susan has done much to inspire other people in her community in Madison, CT. She and her children, along with many volunteers, visit neighboring New Haven once a month to bring necessities, toiletries, pizza, drinks, clothes, coffee, treats, and much more to the homeless and those in need in the city. They have become known as “The Pizza People.” Those in need look forward to their visits.

Susan takes her children out of school every month to participate in this event.

“You can’t teach in school what they learn with their hearts,” she says.

In the 5 years since her diagnosis, Susan has become a leader and a teacher in many ways. She inspires other people to always look beyond themselves, regardless of their own life situation. “You can always do good for others,” she says.

Susan has been the recipient of many awards, including The Source magazine’s “Person of the Week,” Shore Publishing’s Beacon of Light Award, and the Chamber of Commerce’s “Citizen of the Year,” to name a few. But if you ask her, the awards mean nothing. It’s the lives that she touches that mean everything. ✦

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Friend, MY Hero

MY

LANIE MENA MEISSNER York, SC

L

SUBMITTED BY MARY KRUCZYNSKI

LANIE AND I BECAME FRIENDS THROUGH A MUTAL FRIEND, OUR HAVANESE BREEDER. YOU SEE, WE BOTH FELL IN LOVE WITH THE BREED, AND MARIPOSA HAVANESE IS THE BEST PLACE TO SECURE ONE. AFTER THE START OF OUR FRIENDSHIP, LANIE INFORMED ME THAT SHE WAS MOVING from Florida to South Carolina and would soon be my neighbor. I was so looking forward to helping her find a house and acquainting her with my town.

TO HER SURPRISE, THE MAMMOGRAM SHOWED SHE HAD BREAST CANCER. NEVER ONCE DID THIS “GIRL” COMPLAIN. NEVER ONCE DID SHE ASK FOR ANY HELP. NEVER ONCE DID SHE LOSE FAITH. SHE IS MY HERO, AND I AM IN AWE OF HER. Before Lanie left Florida, she saw her gynecologist for one last checkup and then had a mammogram. To her surprise, the mammogram showed she had breast cancer. So, instead of helping Lanie find a house, I had to find her an oncologist, a radiologist, and a surgeon in South Carolina. I also became her point of reference for all things related to cancer, because I work in the “cancer world.”

Lanie and Jeff, her husband, rented a place in South Carolina, and then proceed-

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Lanie Mena Meissner

ed to visit all of the specialists, only to be told she would need a double mastectomy (removal of both breasts) after her biopsy. The surgery was scheduled, but Lanie had an infection at the site of the planned surgery, as well as a flare-up of her skin condition.

The surgeon wanted to move the surgery forward, and because of the infection he only removed one breast, and rescheduled the surgery on the second breast.

Lanie went home knowing full well that she would need to return for the removal of the second breast, and then for reconstruction.

In the interim weeks, Lanie and Jeff bought a new home in York, SC, moved in all of their furniture, had a housewarming party, and in June 2016 returned for the second surgery and reconstruction.

Never once did this “girl” complain. Never once did she ask for any help. Never once did she lose faith. She is my hero, and I am in awe of her.

Lanie is also an artist who finds peace through her artwork, which allows her to destress while going through her treatments. Her work is made of mixed media and includes recycled objects, handmade pottery tiles, vintage items, broken plates, and stained glass. ✦

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FOR JERRY PARINS Green Bay, WI

Cancer

SUBMITTED BY CAROLINE GLANDER, MSN, CNL, CN-BN, OCN

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THROUGHOUT HIS STORIED CAREER AS AN OFFICER WITH THE GREEN BAY POLICE DEPARTMENT, AND LATER WITH THE GREEN BAY PACKERS, JERRY PARINS HAS SERVED THE PUBLIC AND PROFESSIONAL ATHLETES, AS WELL AS HUNDREDS OF PATIENTS WITH CANCER.

Jerry’s history with the Packers began in 1965, when head coach Vince Lombardi contacted the Green Bay Police Department looking for help with keeping fans off the field. Jerry continued in this role until 1992, when he retired from his post as a police officer to become Director of Corporate Security for the Packers.

Jerry’s health took a turn for the worse in 2003, just 3 weeks before his 64th birthday. Out of the blue, he had rectal discharge and bleeding: a colonoscopy revealed a colon cancer tumor roughly the size of a golf ball.

He was devastated. His surgeon told him that the tumor was between stages II and III, so he started chemo and radiation right away.

Jerry first met nurse navigator Connie Worzala through a cold call in 2003.

She had just started her new position as a cancer care coordinator, which evolved into her current nurse navigator role. She later learned that the day she called him was one of his lowest days since his cancer diagnosis. At that point, Jerry needed to know that he was going to survive his colon cancer diagnosis, and that there were many people and services available to him.

Jerry alternated chemotherapy and radiation therapy for months before having surgery, followed by another round of chemotherapy at St. Vincent Hospital in Green Bay. Throughout his treatment, he was supported by his wife, Sandy, his 3 daughters, and his second family­—the Packers.

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Jerry Parins

He continued to work with the Packers as much as he could, but “chemo brain� and fatigue often kept him from being as involved as he wanted. Early in the 2003 season, head coach Mike Sherman invited Jerry to meet with the team. As busy as they were, the players continued to support him throughout his treatment.

Jerry not only made it through chemotherapy, radiation, and surgery, but he used that experience to help others. Jerry decided that he, along with the Vandervest Harley-Davidson dealership and the Green Bay Packers, would start a motorcycle fundraising ride to raise funds for cancer patients.

Jerry and his friend Pat Doherty organized the first Jerry Parins Cruise for Cancer through Vandervest Harley-Davidson of Green Bay, just 16 months after Jerry was diagnosed with cancer. The first cruise raised $20,000 for cancer organizations and patient funds at local hospitals.

The cruises are a growing annual tradition. About 400 riders take pledges

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IN SPITE OF HIS OWN PERSONAL DIFFICULTIES, JERRY CONTINUES TO EXHIBIT EXTRAORDINARY SPIRIT AND OPTIMISM. JERRY IS INDEED A “HERO OF HOPE” TO MANY IN THE GREATER GREEN BAY COMMUNITY. each year to complete the 80-mile round trip between Green Bay and Vandervest Harley-Davidson in Peshtigo.

Jerry’s Cruise for Cancer has been motoring along for 12 years. Since 2004, Jerry has raised more than $1 million to support local cancer care needs!

Jerry has donated those funds to several organizations that provide a variety of cancer support services. Some of these include tools that help distract children undergoing treatments, new wigs for the local wig closet, gas cards for patients

Jerry Parins

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who travel distances to obtain treatments, and grocery cards to families who are affected by the cost of cancer treatment.

The 13th annual cruise, held on June 11, 2016, raised $95,000. He gets letters from people who tell him how much the aid they received helps them. It makes people feel good. As Jerry says, “When we make people smile for one day, it’s all worth it.”

Many of those smiles happen on the day of the cruise: each year, 5 families affected by cancer are honored with a ride in special cars (donated by Casey Cuene) surrounded by riders.

Jerry has a strong belief that patients with cancer should see other patients surviving and thriving after a cancer diagnosis: he believes that it is very important for their well-being. Because of this belief, Jerry makes himself available to meet with patients on a regular basis to encourage them in their fight against cancer.

Jerry visits patients going through treatment to lift them up and provide hope.

THE 13TH ANNUAL CRUISE, HELD ON JUNE 11, 2016, RAISED $95,000. HE GETS LETTERS FROM PEOPLE WHO TELL HIM HOW MUCH THE AID THEY RECEIVED HELPS THEM. IT MAKES PEOPLE FEEL GOOD. AS JERRY SAYS, “WHEN WE MAKE PEOPLE SMILE FOR ONE DAY, IT’S ALL WORTH IT.” After completing treatment in 2006, Jerry spoke at our Cancer Survivor Day and encouraged hundreds of survivors to continue their fight against this disease.

Jerry is gradually transitioning the work of his Cruise for Cancer to others who can carry it on. He routinely encourages new groups that have come up with ways to donate to the Cruise for Cancer and its mission. Despite his own personal health challenges, Jerry continues to motivate others to come forward to help, educate, and support cancer patients.

Jerry has contributed to our community through fundraising and leadership. He is an inspiration to patients and families as they start their cancer journeys. Despite his own personal difficulties, Jerry continues to exhibit extraordinary spirit and optimism. Jerry is indeed a “hero of hope” to many in the Green Bay community. ✦

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Looking

THROUGH A DIFFERENT

Lens

EUGENE H. PASCHOLD, MD Winston-Salem, NC

SUBMITTED BY JULIE POPE, RN

E

EUGENE H. “GENE” PASCHOLD, MD, HAS BEEN A MEDICAL ONCOLOGIST TREATING PATIENTS WITH ALL TYPES OF CANCERS FOR MANY YEARS. DR. PASCHOLD IS A PRACTICING MEDICAL ONCOLOGIST WITH NOVANT HEALTH ONCOLOGY SPECIALISTS IN WINSTON-SALEM, NC, and a member of several medical organizations, including the Society for NeuroOncology, American Society of Clinical Oncology, North Carolina Medical Society, and an avid supporter of CareNet Counseling Services.

Dr. Paschold, known as “Dr. P.,” certainly understands colon cancer and the importance of getting screened. So why did he not get screened for colorectal cancer at age 50, as recommended? He was “just too busy” doing what he loves: helping patients through their cancer journeys. However, after the persistence of his wife Ann, Dr. P. did get that screening colonoscopy. He was not allowed to refuse; his wife had made the appointment, and he was going to be there, end of discussion!

At his first-ever colonoscopy, and to his surprise, Dr. P. was diagnosed with stage III colorectal cancer. He underwent surgery, followed by chemotherapy, all the while still managing to do what he loved—taking care of patients. Dr. P. scheduled his treatments so he could use the weekends for his downtime.

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Dr. Eugene H. Paschold (on left) with his medical oncologist, Dr. Tom Grote.

HE IS A STAR, NOT BECAUSE HE IS A PHYSICIAN WHO BEAT COLON CANCER, BUT BECAUSE HE IS WILLING TO USE HIS VOICE, AND NOT JUST ANY VOICE, BUT THE VERY STRONG, EXPERIENCED VOICE OBTAINED THROUGH HIS OWN JOURNEY DEALING WITH COLON CANCER.

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Dr. P. is a champion for colorectal cancer screening, using his own personal story and medical expertise. He openly engages with our community, assisting with outreach, awareness campaigns using all types of media, as well as his generous donations, to get the message out.

DR. P. OFTEN SAYS, “THE LENS IN WHICH I VIEW THE WORLD IS SO DIFFERENT.” WHAT HE CONSIDERS IMPORTANT HAS CHANGED: HE NOW SEES THE WORLD THROUGH THE EYES OF A PHYSICIAN AND A SURVIVOR. He is a star, not because he is a physician who beat colon cancer, but because he is willing to use his voice, and not just any voice, but the very strong, experienced voice obtained through his own journey dealing with colon cancer.

Dr. P. often says, “The lens in which I view the world is so different.” What he considers important has changed: he now sees the world through the eyes of a physician and a survivor.

Ask Dr. P. about his experience with colorectal cancer, and he will openly share his story—a story he considers a blessing instead of a burden. However, be warned; if you choose to ask, which I certainly encourage you to do, be prepared to be met with a big smile, a huge bear hug, a pat on the shoulder, along with being addressed forever as “friend.” So ask him, just go ahead, and then settle in for an encouraging, genuine heart-to-heart conversation with a survivor, a warrior, and a champion. ✦

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A

Positive

PATIENT Inside & Out KIMBERLEY PRESUTTI Byfield, MA

SUBMITTED BY MARIE C. KELLEHER AND DENISE A. BORELLI, RN, BSN, OCN

C

CANCER HAS A PROFOUND IMPACT ON THE BODY, INSIDE AND OUT—IT CAN LEAVE A LASTING MARK ON A PATIENT’S APPEARANCE AND DEMEANOR EVEN AFTER THE CANCER IS IN REMISSION. SO WHEN A PATIENT REACTS TO CANCER AS WELL AS KIMBERLEY DID, YOU TAKE NOTICE. Kimberley was first diagnosed with cancer in the jaw, a type of head and neck cancer, in June 2014. She underwent 4 major surgeries that included resection of her jawbone with skin grafting and neck dissection, followed by chemotherapy and 3 rounds of radiation.

As the nurses treating Kimberley at Lahey Medical Center in Peabody, MA, we saw her regularly during this period and were struck by her positive attitude even after these procedures. She never covered up her bone or skin grafts, never avoided making eye contact with people, and never stopped being friendly and communicative with patients and hospital staff just because she speaks a little differently.

In fact, she handled the effects of surgery with such acceptance and positivity that we sent other patients after similar procedures to speak with her. She shared her experiences, hope, and strength, which had a profound effect on other patients’ recoveries.

There’s ample evidence that a patient’s outlook can affect her own prognosis, too. Whether this is true for Kimberley is hard to say, but we were thrilled to learn that she had no signs of cancer after completing her treatment in May 2016.

Part of Kimberley’s strength comes from her support system. Her husband, Dean, accompanied her to every appointment, including chemotherapy and ra-

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Kimberley Presutti

ANOTHER PIECE OF KIMBERLEY’S RESOLVE COMES FROM HER OUTLOOK ON LIFE: SHE’S TRULY A GLASS-HALF-FULL KIND OF WOMAN. DURING AND AFTER TREATMENT, SHE ALWAYS PUT HER BEST FOOT FORWARD AND REFUSED TO LET HER DISEASE DICTATE HER MOOD.

diation treatments, and she worked part-time throughout her treatment, finding strength in the support of her staff and her boss.

We believe that another piece of Kimberley’s resolve comes from her outlook on life: she’s truly a glass-half-full kind of woman. During and after treatment, she always put her best foot forward and refused to let her disease dictate her mood.

Although her face and her voice will always bear a lasting reminder of what she went through over the past 2 years, we have no doubt that Kimberley will also continue to smile, laugh, and project her inner light for many years to come. ✦

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Inspiration TO THE CANCER

Community ALISON M. SACHS, MSW, CSW, OSW Rancho Mirage, CA

SUBMITTED BY VICKI KOCEJA

A

ALISON IS A CERTIFIED ONCOLOGY SOCIAL WORKER WITH AN IMPRESSIVE RÉSUMÉ. SHE WAS INSTRUMENTAL IN HELPING CALIFORNIA’S EISENHOWER MEDICAL CENTER OPEN ITS NEW EISENHOWER LUCY CURCI CANCER CENTER, WHERE SHE IS THE DIRECTOR OF COMMUNITY

OUTREACH

AND

CANCER

SUPPORT

SERVICES. In that capacity, she is involved in the development, design, implementation, and assessment of the community outreach program of the cancer center, as well as in patient and family services, disease prevention programs, and social work services.

Alison also facilitates 3 cancer support groups, teaches social work classes at 4 universities, and serves on the boards of several cancer organizations, including the American Cancer Society–CA Division, the Lung Cancer Alliance, the Association of Oncology Social Work, and the Desert Cancer Foundation.

Imagine Alison’s shock, then, when she found herself needing the very support services and programs she has spent much of her professional life building!

Alison learned she had early-stage lung cancer after participating in the International Early Lung Cancer Action Program offered at Eisenhower Lucy

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Alison M. Sachs, MSW, CSW, OSW

Curci Cancer Center. Luckily, she was able to rely on the physicians, nurses, technicians, and social workers she’s worked with for more than a decade.

Her doctors put together a treatment plan that included surgery, and she has follow-up scans every 3 to 6 months. Her top-notch care has paid off: the standard survival for patients with lung cancer is about 16 months, but Alison was diagnosed more than 5 years ago. Her continued good health may, in part, come from the amazing support services that she herself developed here.

I joined the Eisenhower Lucy Curci Cancer Center a year and a half ago and have watched Alison change lives as a social worker, support group leader, lecturer, and fundraiser. For example, she’s involved with a program called BIGHORN BAM (Behind a Miracle)—a philanthropic group that has generated more than $5.25 million for patients at the cancer center. BAM’s funds cover

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everything from 3D breast CT scanners to free transportation to treatment for patients who can’t afford it.

Alison supports BAM by giving lectures to the donors and members of the group, and works with the cancer center physicians and staff to identify the center’s greatest needs so BIGHORN BAM can direct the funds appropriately.

THANKS TO ALISON, THOUSANDS OF PATIENTS AND THEIR FAMILIES WILL EFFECTIVELY HAVE THEIR CONCERNS HEARD, THEIR NEEDS ADDRESSED, AND THEIR FEARS CALMED. REMARKABLE AS IT IS, ALISON IS SO MUCH MORE THAN HER RÉSUMÉ: SHE’S A COMPASSIONATE SOCIAL WORKER, A COURAGEOUS SURVIVOR, AND AN INSPIRATION TO THE ENTIRE CANCER COMMUNITY. Beyond the success of these programs, Alison is truly the kind of person we need in the fight against cancer. Patients and colleagues alike say she is a breath of fresh air: she takes the time to get to know others, listen to questions and concerns, and offer hope and guidance for everyone for whatever lies ahead.

Although her diagnosis was a challenge she will continue to deal with, lung cancer has shaped Alison’s approach to her work in remarkable ways. Thanks to Alison, thousands of patients and their families will effectively have their concerns heard, their needs addressed, and their fears calmed.

Remarkable as it is, Alison is so much more than her résumé—she’s a compassionate social worker, a courageous survivor, and an inspiration to the entire cancer community. ✦

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Navajo

WOMEN: OVERCOMING

Cultural BARRIERS NELLIE SANDOVAL Farmington, NM

SUBMITTED BY FRAN ROBINSON, RN, OCN

T

THE NAVAJO PEOPLE CONSIDER CANCER SO TABOO THAT MANY BELIEVE IT CAN BE CAUSED JUST BY SPEAKING ABOUT IT. IN FACT, THE NAVAJO TERM FOR CANCER, “ŁÓÓD DOO NÁDZIIHII,” TRANSLATES TO “THE SORE THAT DOES NOT HEAL.” These are the cultural barriers that Nellie, a Navajo breast cancer survivor, has faced as an advocate for early detection. She grew up on the Navajo reservation in Northwest New Mexico.

This literal linkage to a sense of hopelessness reflected a cultural perspective that impeded early detection.

Nellie wanted to change the way her people viewed cancer so that they would seek screening and treatment at an earlier more treatable stage.

Her mom had breast cancer, so she was aware and on the alert, she said. She found a lump during a self-exam in 1989 and learned that it was malignant. It’s a devastating diagnosis.

Though Nellie’s cancer was early stage II, she had a lumpectomy immediately and

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Nellie Sandoval

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Nellie Sandoval

started aggressive chemotherapy and radiation therapy, which is when I met her. As her nurse navigator, I followed her treatment and we eventually became lifelong friends.

In 1993, Nellie and another woman initiated a local women’s cancer support group and revived the American Cancer Society’s Reach to Recovery program in the Four Corners area (Utah, Arizona, Colorado, New Mexico), which she continues to this day. Because she was the only volunteer who could speak Navajo, Nellie began visiting with newly diagnosed Native women and quickly learned that many Navajo women were being diagnosed in later stages—and dying in greater numbers—than other American women.

She told me, “My ladies are dying. We came to find out that all my ladies were late-stage diagnoses, and they didn’t stand a chance. I knew we had to do something to educate the reservation.”

She had a passion for making a difference in the lives of the women in her community and kept talking and meeting with groups of women.

Because of her mother’s experience with breast cancer, Nellie recognized the

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importance of regular self-exams as well as mammograms. Educating others, though, would prove to be a challenge.

In Navajo, if you talk about cancer, it’s like you’re actually wishing it on someone, Nellie says. But she knew the culture and the language, and she knew they had to do something.

IN NAVAJO, IF YOU TALK ABOUT CANCER, IT’S LIKE YOU’RE ACTUALLY WISHING IT ON SOMEONE, NELLIE SAYS. BUT SHE KNEW THE CULTURE AND THE LANGUAGE, AND SHE KNEW THEY HAD TO DO SOMETHING. In partnership with the San Juan Medical Foundation, Nellie developed her first video, “Breast Cancer: It Can Be Healed.” Nellie brought her cultural expertise to the video and I contributed with clinical expertise. The video includes Navajo audio and English subtitles.

We took it on the road and started going to Chapter houses, and we took it to Navajo Nation TV and radio and went on the Navajo Hour station here. Nellie immediately faced resistance from her community. She responded respectfully, but with conviction.

With support from a 5-year grant from the National Cancer Institute, awarded to The Native American Cancer Research Partnership, Nellie and her team, in collaboration with Northern Arizona University and the University of Arizona Cancer Center, created a second Navajo-language video, “Breast Cancer: Let the Healing Begin,” which features Native women who have faced breast cancer.

Now, more than a decade since she created the videos, launched seminars, and published materials to change the cultural perspective on cancer, things are starting to change for Navajo women.

The women aren’t dying like they were, according to Nellie. They are becoming aware and are taking care of business.

Nellie has inspired her oldest daughter, Stefanie Raymond-Whish, PhD, as well. On Navajo lands, radioactive waste from abandoned uranium mines and mills has dissolved into groundwater and settled into soil through dust particles.

When Dr. Raymond-Whish was completing her graduate degree in biology at Northern Arizona University, she investigated the potential impact of uranium on the female reproductive system and mammary glands, which may potentially contribute to breast cancer incidence in Navajo women. ✦

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Difficult CANCER, Stronger

PATIENT TANIA STUTMAN New York City, NY

SUBMITTED BY KATHLEEN ABBOTT

T

TANIA IS LIVING WITH A RESILIENT CANCER CALLED GASTROINTESTINAL STROMAL TUMOR (GIST), A SOFT-TISSUE CANCER THAT USUALLY BEGINS IN THE STOMACH OR INTESTINE, AND DOESN’T RESPOND TO CHEMOTHERAPY

or radiation. When she was diagnosed in 1998, patients with GIST lived an average of 10 to 14 months, and the disease came back 90% of the time after surgery.

When I met her in 2009, her organization was looking for a marketing company. I first saw her as a charming and vibrant woman working to promote a cause she believed in; little did I know that she was in fact a patient with cancer who had been battling the disease for more than 7 years.

When you meet Tania, though, you can tell right away that she’s just as tough as her disease. The daughter of a Holocaust survivor, she spent the first 11 years of her life in Communist Romania. At age 15, she and her family emigrated to the United States, bringing just the clothes on their backs, and hope for a better life. For many years, Tania had that with her husband Robert, and her daughters Shawn and Beth.

But in 1998, during an emergency hysterectomy her surgeon spotted a growth on her small bowel. She was told it was likely a rare leiomyosarcoma, which at the time was a death sentence. Although Tania and Robert were devastated, they were determined to fight back. They met Dr. Ephraim Casper at Memorial Sloan Kettering in New York City, where they learned that Tania had GIST, which had spread to her liver.

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Tania Stutman

But her doctors were not going to give up on her just because she had a rare and difficult diagnosis. Moreover, a brand new drug was being developed for GIST. Tania and Robert leapt at the chance and traveled to the Fox Chase Cancer Center in Philadelphia to participate in a clinical trial with the new drug for GIST. Fortunately, the drug worked for her: she is still taking it to this day to treat GIST. But Tania’s work had really just begun.

Because the drug doesn’t work for everyone with GIST, and some cancers become resistant to it after time, Tania understood the urgent need for further research and better treatments. With Dr. Casper’s help, Tania and Robert launched the GIST Cancer Research Fund in 2002. By now, the fund has raised more than $8 million through fundraisers, including annual walkathons, golf outings, galas, and a 1,000-mile Cycling for a Cure ride.

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These funds go to the cancer research hospitals, including Fox Chase, Sloan Kettering, Brigham and Women’s Hospital in Boston, and Oregon Health Sciences University Cancer Institute. Tania sends every donated dollar directly to GIST research, because few nonprofit and government organizations support this important work.

TANIA IS TRULY AMAZING IN HER ATTITUDE AND SPIRIT. SHE NEVER GIVES UP AND ALWAYS HAS A KIND WORD OF COMFORT FOR ANYONE WHO REACHES OUT TO HER. I HOPE THAT SHE WILL BE RECOGNIZED FOR THE KINDNESS AND HOPE SHE CONSTANTLY BRINGS TO OTHERS IN NEED. Tania is hopeful that research will find a cure, but she knows that patients need help right now, too. She and Robert take calls day and night from patients with GIST around the country and across the globe. They listen to patients’ fears and offer hope and guidance. She even helps them correspond with and arrange transportation to meet GIST specialists.

Against all odds, she still keeps challenging herself and brings a ray of hope for patients with GIST throughout the world. Tania is truly amazing in her attitude and spirit. She never gives up and always has a kind word of comfort for anyone who reaches out to her. I hope that she will be recognized for the kindness and hope she constantly brings to others in need. ✦

Tania Stutman

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Song Hope Children

A

OF

FOR

WITH

CANCER

SARAH SWAIM Norfolk, VA

SUBMITTED BY MARION SWAIM

S

SARAH IS A CANCER SURVIVOR. SHE WAS DIAGNOSED WITH BIPHENOTYPIC LEUKEMIA (A COMBINATION OF THE 2 TYPES OF ACUTE LEUKEMIA) AT AGE 14 AND WAS TREATED FOR 20 MONTHS WITH CHEMOTHERAPY. She spent more than 100 days as an inpatient during the 6 months she was receiving chemotherapy and endured many complications, including sepsis and a serious fungal infection. Sarah continued her treatment as an outpatient, including 12 months of maintenance therapy.

As a cancer survivor, Sarah has committed herself to support patients with cancer and cancer research, and has actively volunteered with many organizations focused on cancer in children, including the St. Baldrick’s Foundation, the American Cancer Society, CureSearch, the Children’s Hospital of The King’s Daughters, Make a Wish, Special Love, and the Leukemia & Lymphoma Society.

She has also advocated for more funding for research on Capitol Hill as an active participant in Gold Ribbon Days. Most important, Sarah has made herself available to new patients and their families to provide insight and support patients in their cancer journey. Throughout her illness and survivorship while attending middle and high school, she maintained honor roll grades, attended a magnet high

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Sarah Swaim

school for musical theater, and was accepted into East Carolina University.

At East Carolina University she studied early childhood education, partly because of the connections she had made with young children during and after her cancer treatment. At the end of her sophomore year at the university, after being in remission for 6.5 years, Sarah got the devastating news that her cancer had returned.

She participated in a clinical trial that investigated a new drug, with the hope of achieving remission with this new drug. Sarah was hospitalized for 3 months, and then when her cancer was in remission, she was transferred to Duke University Medical Center, where she received an allogeneic stem-cell transplant.

Never someone to pass up an opportunity to bring awareness to childhood and young adult cancers, she supported Hockey Fights Cancer and represented Stupid Cancer by singing the national anthem at the Carolina Hurricanes hockey game.

This was just 41 days after her stem-cell transplant.

Sarah’s recovery from her transplant was long, and she had serious complications, including graft versus host disease, which required 11 hospitalizations, nutritional support (by total parenteral nutrition) for 6 months, and high-dose steroid therapy. Although seriously ill, Sarah kept her commitment to serve as 1

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of 5 St. Baldrick’s Foundation National Ambassadors in 2011-2012.

Sarah is now 5.5 years posttransplant. She is 26, and her health is restored. She has resumed normal activities, including a full-time teaching position at the New E3 School in Norfolk, VA. She continues to volunteer for many organizations that support young patients with cancer. She volunteers for Special Love, an organization that provides camp experiences for children with cancer, and she is a regular counselor for camp and weekend events at their Front Royal facility 5 hours away from home.

SARAH IS A MODEL FOR SURVIVORSHIP: SHE ACCEPTS RESPONSIBILITY FOR HER FOLLOW-UP CARE AND ENCOURAGES OTHER YOUNG ADULT CANCER SURVIVORS TO TAKE THEIR HEALTH FOLLOW-UP SERIOUSLY. Sarah also continues to volunteer for the St. Baldrick’s Foundation, writing regular survivorship blogs, and recently co-organizing the Hampton Roads fundraising event, which raised more than $154,000 for childhood cancer research. Sarah shaved her head at the event to honor her friend Abby, who is also a leukemia survivor and has also received stem-cell transplantation. Sarah personally raised more than $9,000. This was her third time shaving her head to raise research funding.

Her total personal fundraising for St. Baldrick’s is in excess of $25,000. She supports and participates in the Leukemia & Lymphoma Society’s Light the Night, the American Cancer Society’s Relay For Life, and Duke Pediatric Blood and Marrow Transplant program’s Rainbow Heroes Walk.

In addition to all this, Sarah is active in her university’s sorority Alpha Omicron Pi Alumnae chapter; she serves as the chapter’s representative to the Alumnae Panhellenic organization that supports collegiate members with scholarships. She also volunteers regularly for the Portsmouth Humane Society, and helps to place orphaned cats into new homes.

Sarah is a model for survivorship: she accepts responsibility for her follow-up care and encourages other young adult cancer survivors to take their health follow-up seriously. She continues to support our local children’s hospital and will meet with any new patient or parent when asked. She encourages patients as well as all members of the healthcare team.

Everyone who meets Sarah is touched by her positive attitude, her light of encouragement, and her love of life. She is a lovely young woman who at an early age vowed to not let cancer define her in a negative way. She committed to do everything she could to make having cancer a positive experience in her life. ✦

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Overcomer AND A Survivor

AN

JEARLEAN TAYLOR Baltimore, MD

M

MY EXTERNAL APPEARANCE PROJECTS HIGH FASHION, POISE, AND CONFIDENCE. MY INTERNAL EXPERIENCE WAS CHARACTERIZED BY LOW SELF-ESTEEM AND INSECURITY. WHAT YOU WON’T SEE IN MY PHOTOS IS MY OSTOMY—BUT THAT’S NOT BECAUSE I’M HIDING IT. In fact, as a successful model, motivational speaker, writer, and entrepreneur, it is one of the first things I tell people about myself.

It amazes people when they see my modeling pictures. Even my friends say to me, “I didn’t know you’re an ostomate”—I walk with such pride and dignity.

I have spent years building the confidence needed to freely share my story, which began when I was just 3 years old. I was outside playing when my older sister noticed I had blood on my clothes. She took me inside and showed my mom, who called my dad, and they took me to the hospital. At the University of Maryland Medical Center, tests revealed I had a rare soft-tissue sarcoma (called rhabdomyosarcoma) in my genital area. My parents were told that I had a 50/50 chance of survival.

I started treatment at Memorial Sloan Kettering Cancer Center in New York City, where I received chemotherapy and radiation, as well as more than 12 surgeries, including a urostomy and colostomy.

Throughout my diagnosis, treatment, and recovery, my family did everything they could to give me a normal childhood, even though I spent much of the first 12 years of my life traveling between Baltimore and New York for treatments, and to ensure the cancer did not come back. “Normal” is a relative term when you are a young child dealing with an ostomy bag.

My confidence took its first hit in elementary school. My peers teased me be-

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Jearlean Taylor

cause of the ostomy bag, leaving me hurt and unable to explain why I needed it. I was homeschooled for a time, but things were not better when I returned to middle school.

It wasn’t until high school that I began to regain some of my lost selfconfidence. I developed methods for handling the ostomy bag and started playing volleyball and making friends, while studying cosmetology. After graduation, I worked for 12 years as a hairstylist, eventually opening my own salon.

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Jearlean Taylor

As time passed, I developed passions for modeling and journal writing. I did not grow up saying I wanted to be a model, but I’ve been modeling for 18 years now. At first I thought to myself, “Modeling and an ostomy bag—no way!”

But I decided to step out on faith and try it. At first I didn’t tell anyone, but eventually I opened up to my director, who told me that it didn’t matter, and that my talent spoke for itself.

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For the past decade, I have also managed my own company, J & Company Christian Modeling, which works with aspiring young models (ages 6 and older) on all aspects of modeling, whether they fit the traditional “model mold” or not.

I’M IN AWE OF THE BLESSINGS THAT HAVE HAPPENED IN MY LIFE, BECAUSE I’VE TOLD MY STORY OF OVERCOMING CANCER AND LIVING WITH AN OSTOMY BAG. I USED TO SAY, “WHY ME? WHY CANCER, WHY OSTOMY, WHY SURGERY?” BUT NOW I SAY, “WHY NOT ME?” JUST BECAUSE YOU HAVE DIFFICULTIES IN LIFE DOESN’T MEAN YOU CAN’T MAKE IT. We don’t discriminate—it’s come as you are. There are many positives to modeling, but there are also downsides in this industry: people telling you that you’re not this, or not that. So we build self-esteem, self-worth, and confidence.

To overcome my self-confidence issues, I also turned to writing and, eventually, to sharing my story with others. My pastor’s wife, the late Lynnette James, encouraged me to channel my sadness and frustration into a journal. Those writings later became a book, Pretty Girl Blues, an autobiography I published in 2013.

Lynnette, my mom, and my faith in God played a major part in me talking and writing about my story. When I was feeling sorry for myself, I started writing about what was going on. I was a pretty girl, but depressed and angry about my circumstances. Writing about it helped me to heal.

Two years ago, I cofounded a Baltimore-based support group, Osto Beauties, which has been a blessing to me and to other ostomates who have survived lifealtering medical conditions, such as cancer, ulcerative colitis, or Crohn’s disease.

I also give motivational speeches around the country to other ostomates, cancer survivors, church groups, youth mentoring groups, medical professionals, and women’s health organizations.

I’m in awe of the blessings that have happened in my life, because I’ve told my story of overcoming cancer and living with an ostomy bag. I used to say, “Why me? Why cancer, why ostomy, why surgery?” But now I say, “Why not me?” Just because you have difficulties in life doesn’t mean you can’t make it.

I’m an overcomer, and a survivor. ✦

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WINNER OF THE 2016

Patient ™

She IS THE

GLUE THAT KEEPS IT ALL ogether

T

MARYANN WAHMANN Bellmore, NY

SUBMITTED BY TRICIA WAHMANN-KNATZ

M

MY MOM, MARYANN WAHMANN, IS A CARING, LOVING WIFE, MOTHER, AND GRANDMOTHER. SHE HAS BEEN MY AND MY BROTHER’S ROLE MODEL FOR YEARS. IT TOOK 7 YEARS OF SEARCHING AND RECEIVING TREATMENT FOR SEVERAL WRONG DISEASES TO FINALLY GET TO HER TRUE DIAGNOSIS—CARCINOID CANCER—A TYPE OF NEUROENDOCRINE TUMOR (NET).

In 2001, she had surgery to remove the tumor from her small intestine.

Since then, she has been receiving treatment for neuroendocrine cancer, and her symptoms include continuous diarrhea, abdominal cramping, flushing, and low blood pressure. These are controlled only by a 24-hour infusion with Octreotide, a treatment used to control such symptoms in some types of cancer, including NETs. At the time of my mom’s diagnosis, my parents searched the Internet to find everything they could about neuroendocrine cancer, or carcinoid cancer specifically, but there were only 2 sites. They used all the information they found to educate the rest of our family.

My parents went to their first support group meeting in May 2001. At the meeting, they said that there was a great need to reach more people. In February

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of 2002, they became co-leaders of the Long Island support group, and under their leadership, the small group flourished to more than 250 members.

The Long Island support group soon became the New York support group, serving members from Queens, Brooklyn, Staten Island, Bronx, and Westchester, NJ. The support group meetings are held every 6 weeks. She also encourages patients to form other support groups around the world, and gives a helping hand to get them started.

In 2003, still feeling that some needs of the NET community were not being met, she decided that as a family, we should start a foundation. She has taught us by example to be an advocate for patients with neuroendocrine cancers.

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Maryann with her husband

The mission is to help bring awareness and to educate patients, caregivers, and medical professionals. The most important part of our mission is to empower patients to get the best information regarding their treatments, to make the proper choices, and be advocates for themselves.

In 2004, we became a 501(c)3 charity called “The Carcinoid Cancer Awareness Network.” In 2014, we changed that name to the “Neuroendocrine Cancer Awareness Network” (NCAN) to serve the entire NET community.

At NCAN, we provide all the support groups with bracelets and pins to share the day with support group members. Since 2005, she has provided ongoing support to these groups by facilitating group leader meetings to educate these leaders to help their group members.

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Over the past 13+ years, my mom has dedicated endless time, energy, and work every day for patients with neuroendocrine cancers around the world.

Since the inception of our foundation, we have produced more than 50 patient conferences and have reached thousands of patients, through patients who have attended live meetings, watching our video online, or the DVD of the events.

WHEN A MASCOT WAS NEEDED, MY MOM THOUGHT A ZEBRA WOULD BE GREAT, BECAUSE THERE ARE NO 2 PATIENTS WITH NEUROENDOCRINE CANCERS WHO ARE THE SAME, AND ZEBRAS HAVE INDIVIDUAL SETS OF STRIPES, MUCH LIKE A FINGERPRINT. NOW, OTHER SUPPORT GROUPS AND FOUNDATIONS USE THE ZEBRA AS A MASCOT. When a mascot was needed, my mom thought a zebra would be great, because there are no 2 patients with neuroendocrine cancers who are the same, and zebras have individual sets of stripes, much like a fingerprint. Now, other support groups and foundations use the zebra as a mascot.

We designed the first stuffed zebra in 2003. My mom helped set up a network with many companies to get information about treatments; NCAN then provides that information for free to patients. NCAN’s toll-free hotline is open 7 days a week, and rings in my parents’ home.

My mom was on the planning committee for the First Worldwide NET Cancer Day and served as a committee member from 2009 through 2012. She helped to plan and facilitate several of our meetings with international groups. In 2012, I, too, was diagnosed with neuroendocrine cancer.

My mom is responsible for getting the word out about neuroendocrine cancer awareness and NCAN through many avenues, including press releases, newsletters, and social media (through Twitter, LinkedIn, and Facebook). NCAN’s Facebook page has nearly 5,000 members. Our website (www.netcancerawareness. org/) has had 750,000 hits to date.

My mother has volunteered her time to NCAN and to patients with neuroendocrine cancer while living with this cancer and receiving ongoing treatment. I cannot think of someone more deserving to receive recognition for her time with the NET community. She truly does it all, and is the glue that keeps NCAN running. ✦

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“MY

Mommy

IS BRAVE AND ” Strong

LEAH WALIA Bethlehem, PA

SUBMITTED BY MAURA PRICE, RN, BSN, OCN

A

ALL PATIENTS WITH CANCER ARE HEROES IN THE TRUEST SENSE OF THE WORD, AND EACH PATIENT APPROACHES HIS OR HER JOURNEY DIFFERENTLY, BUT SOME DO IT EXCEPTIONALLY. LEAH IS ONE OF THOSE extraordinary and exceptional people! She is a fighter. She owned her breast cancer diagnosis and remained optimistic throughout her treatment.

Her story begins with her daughter Michelle, who had many questions and concerns about her mom and her cancer. Michelle was in first grade when Leah was diagnosed. She said, “My mommy is brave and strong, and I want to help other patients with cancer be strong too.”

Michelle wanted patients like her mom to have something to do while they were being treated. She spoke to her mom about this, and the “chemo bag” was born. The chemo bag is a tote bag that is full of useful items to occupy and comfort patients while they are receiving treatment. Her idea was to ensure that all patients receive the gift of a chemo bag on their very first day of treatment.

The chemo bag includes comfort items, such as handmade crocheted blankets and hats, a water bottle, chapstick, mints, and hand cream. It also includes helpful items to pass the time, such as puzzle books, word searches, and pens. The CHEMO bag stands for Caring, Helping, Encouraging, Motivating, Others.

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Leah with her family

The first chemo treatment is a dreaded day, and this gift is a thoughtful, touching surprise to add some cheer and encouragement. Helping others has helped Leah’s daughter, Michelle, stay strong throughout her mother’s journey with breast cancer.

Leah, her husband Alan, and their daughter Michelle started this project with little financial backing and resources, but with the intention of making a difference in the lives of patients in the local community. She recruited the help of family, friends, and local businesses. She began a webpage to let others know about the project.

Leah and Michelle give the gift of hope with each bag they hand out. They began by supplying bags to patients at one cancer center location in the Lehigh Valley, and now, through their hard work and the generosity of others, they provide the chemo bag to many sites across the Lehigh Valley.

Leah and the chemo bag were featured on an episode of the “Montel Williams Show” a few years ago. She shared her story, allowing others to be touched by her message that you too can beat the odds and give back.

Patients say how wonderful it is to know that someone who has walked in their shoes is thinking of them. The bags are like little hugs to every patient who receives one. Leah’s story inspires optimism, grace under pressure, and positivity to fight the fight and come out on the other side brighter, better, and filled with hope.

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Leah supports women with breast cancer in other ways. She offers friendship and support to newly diagnosed women, because she knows how frightening a new cancer diagnosis is. She saw a “Field of Pink” event online and then organized a similar event locally. She worked with another local survivor to find an empty park field, and in October they “planted” a field of pink flags with written messages of hope, love, and memories. It has become an annual event and is a very impressive sight. The pink flags cover the majority of the field. Participants walk from our local community center to a nearby field where they plant their flags.

THE BAGS ARE LIKE LITTLE HUGS TO EVERY PATIENT WHO RECEIVES ONE. LEAH’S STORY INSPIRES OPTIMISM, GRACE UNDER PRESSURE, AND POSITIVITY TO FIGHT THE FIGHT AND COME OUT ON THE OTHER SIDE BRIGHTER, BETTER, AND FILLED WITH HOPE. This has raised local awareness for breast cancer, as well as funds for women receiving breast cancer treatment to be used for nonmedical expenses, such as rent, babysitting, or car payments. This fund is immensely helpful to women who may have lost income or have additional expenses during treatment. Leah has also taken part in other fundraisers for this cause, including basket bingo and hot yoga.

Leah gives so much of herself. She is a generous and caring person. Even though she works and has a family of her own, she always finds time to help and inspire others.

She is my hero because of her spirit, sense of community, and dedication to help others with cancer. ✦ Leah Walia

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“Donna described to me a situation she had with one of her patients who was unable to get his cancer medication: because he needed the medication but couldn’t get it, she shared her own medication with him.”

—From the story about Donna Clark, RN, BSN, OCN, submitted by Denise D. Gates-Baker, RN

“In the 5 years since her diagnosis, Susan has become a leader and a teacher in many ways. She inspires other people to always look beyond themselves, regardless of their own life situation. ‘You can always do good for others,’ she says.”

—From the story about Susan McDevitt, submitted by Riley McDevitt

“Dr. Paschold has been a medical oncologist treating patients with all types of cancers for many years. He certainly understands colon cancer and the importance of getting screened. So why did he not get screened for colorectal cancer at age 50, as recommended? He was ‘ just too busy’ doing what he loves: helping patients through their cancer journeys.

At his first-ever colonoscopy, and to his surprise, he was diagnosed with stage III colon cancer. What he considers important has changed: he now sees the world through the eyes of a physician and a survivor.”

—From the story about Eugene Paschold, MD, submitted by Julie Pope, RN

The Lynx Group Publisher of CONQUER: the patient voice TM ISBN: 978-0-692-80540-4