TBCM Sept/Oct Test

CancerFREE

Free

A practical guide to living with cancer

GRATITUDE

Things to be Thankful For

When to Dial 911

Take This Copy Home

www.touchedbycancermagazine.com

Triangle Edition • Sept/Oct 2011

the CancerandjourneySurvivor Maria Gruskin and the

Raleigh Roundup

10

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JOHNSTON MEDIC AL CENTERA H e a l t h i e r t o m o r r o w b e g i n s t o d a y Clayton

JOHNSTON MEDIC AL

A H e a lt h i e r t o m o r r o w b e g i n s t o d ay

ClaytonCENTER

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Cancer

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26

FEATURES

15 North Carolina’s Survivorship Summit

More than 150 guests attended the N.C. Comprehensive Cancer Program’s fifth-annual summit.

DEPARTMENTS

7 About Touched by Cancer Who we are

8 From the Editor Circle the wagons!

10 Focus Group Meet the people we interviewed for this issue

12 Quick Question What was the best piece of advice you ever heard surrounding cancer?

14 Letters Readers continue to respond

16 News Happenings from the cancer world in the Triangle

22 Calendar of Events As the temperatures start to drop, the events heat up

58 Resources Find treatment centers, support groups and more

62 TBC’s Editorial Advisory Board Meet the local leaders who help shape the magazine

64 Next Issue A look at what’s on tap for November/December

Page 16

2 Touched by Cancer

Sept/Oct 2011 Vol. 2, No. 5

Cancer certainly presents physical and emotional challenges and difficulties, but if you look hard enough, you may just find some gifts in disguise.

Gratitude: It Can Lift Cancer’s Fears

10 Things a Cancer Patient Can be Thankful For

Cancer certainly can be dark and scary—especially right after diagnosis—but it is a part of life. Another part of life is being grateful for what you have. Gratitude and cancer may be an odd pairing, but they do go together.

Page 26

30Cancer and its treatments can wreak havoc with your body. Being able to differentiate between what is “normal” to expect and what necessitates a trip to the emergency room can be critical.

Should I Stay or Should I Go?

32Clinical trials are not a last-ditch effort to save a life when nothing else is working; they are valuable research tools without which no progress against the disease would be made. Here’s why you should participate.

Putting Cancer on Trial

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4 Touched by Cancer

CancerSept/Oct 2011 Vol. 2, No. 5

SECTIONS

24 From the Doctor Palliative care is not hospice

25 From the Navigators Finding something good in the cancer journey

46 Childhood Cancer A positive and profound turning point?

48 Faith Matters Do you want the good news or the bad news?

49 Caregiving Who cares for the caregiver?

50 Nutrition What’s food got to do with it?

52 Exercise Yoga brings balance to life

54 Family The company you keep

56 End-of-Life Issues Living with, and transcending, loss

PROFILES

4 Touched by Cancer

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The Power of the Mind & Body

Being a two-time cancer survivor has greatly influenced the way Dr. Sharon Taylor nurtures and treats her patients.

Givin’ Cancer the Boot

Survivor Maria Gruskin was fortunate to make it well into adulthood without being touched by cancer. Then, six years ago, both her parents were diagnosed, and she’s been fighting the disease ever since.

Marathon Woman

The Leukemia & Lymphoma Society has made great strides in the fight against blood cancers, and the state’s executive director, Tiffany Armstrong, has been right in step—step after step after step.

A Big Development

Rex Health is getting ready to break ground on a $64 million project that will quadruple the size of its existing cancer center and offer a new level of service and comfort to its patients.

Page 38

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The Running Ribbon is a registered trademark of Susan G. Komen for the Cure® • Graphic design by Coalmarch Productions • Photo by Curtis Brown Photography

Our promiseTo save lives and end breast cancer

forever by empowering people,

ensuring quality care for all and

energizing science to find the cure(s)

Komen is the world’s largest source of

non-profit funds dedicated to curing

breast cancer at every stage.

Susan G. Komen for the Cure® recommends that you make these actions a part of your life:

Komen NC Triangle Affiliate919-493-CURE (2873)

Toll Free 866-971-CURE (2873)

www.komennctriangle.org

National Helpline1-877-GO KOMEN

Know your risk by learning about your family health history and talking to 1. your health care provider about your own personal risk.

Ask your doctor which screening tests are right for you if you are at a 2. higher risk. Have a mammogram every year starting at 40 if you are at average risk. Have a clinical breast exam at least every 3 years starting at 20 and every year starting at age 40.

Know how your breasts look and feel and report any changes to your 3. health care provider right away.

Make healthy lifestyle choices that may reduce your risk of breast cancer.4.

Komen.indd 1 11/10/2010 10:59:30 AM

www.touchedbycancermagazine.com 6

i n t h i s i s s u ei n t h i s i s s u e

6 Touched by Cancer

“Cancer could be bad and good? Could I find something good in cancer? Something to counter the fear and misery I was feeling?” —Ginny Turner, Gratitude: It Can Lift Cancer’s Fears Page 26

“Fighting cancer is often a family affair, and one that requires everyone to pitch in and lend a hand—even Aunt Lydia.” —Phill Powell, Family: The Company You Keep Page 54


GratitudeIt Can Lift Cancer’s Fears

Anyone who has received

a cancer diagnosis knows

what a dark and life-chang-

ing day that is. And that day is fol-

lowed by weeks of uncertainty

and distress as a cascade of medi-

cal appointments fills the calendar

and friends and family continu-

ally ask what’s going on. Without

knowing what’s next and how

you’ll feel, the first phase of hav-

ing cancer is gloomy, frightening

and emotionally draining.

2 Touched by Cancer

BY GINNY TURNER

F A M I L Yf a m i l y

54 Touched by Cancer


Family: The Company You KeepBy Phill Powell

It’s only natural that when we hear of a relative facing a life-threatening disease, we want to reach out to him or her—with

greeting cards, phone calls, email messages and personal visits. Each of these methods offers a way to let the patient know that we care about him or her and feel sympathy for his or her medical situation.There’s no telling how much benefit

these demonstrations of love and com-passion can provide. Even if motivated on some level by a familial sense of obligation, visits from family members can underscore the patient’s connection to others (and, by association, to life itself) and make the pa-tient feel less alone as he or she battles his or her illness.

On the other hand, “too much of a good thing” can wind up having the opposite ef-fect. Each human interaction—even posi-tive interactions with people the patient loves—requires a certain amount of en-ergy. And for a person marshaling his or her forces to battle cancer, managing the expenditure of personal energy becomes critically important. And this is where family visits can be-

come tricky. Because even though Aunt Lydia wants to come and bring cheer to the patient, the patient may not have enough energy to interact with her for an entire af-ternoon. This is why it’s important (if at all possible) that someone close to the patient serve as an intermediary—to manage the flow of visitors and make sure that the pa-tient is not drained by having to entertain “too much company” for excessive periods of time.

The Value of GatekeepersRelatives who regularly enjoyed visiting with the patient in the past may, despite their best intentions, expect to have the same type of visit they used to enjoy, even

though the patient’s life has been completely turned upside down. So when Aunt Lydia calls and says she wants to come pay a visit, the patient, not wanting to seem rude, might agree to let her come stay for the weekend as she has always done before. This type of situation is exactly why the patient needs an intermediary.

Just as presidents and chief exec-utives have staff members who act as gatekeepers, the patient needs someone to gently explain to well-meaning visitors why it may be a bet-ter idea to plan a shorter visit instead. It may conflict with the notion that the quality of a visit is measured by its dura-tion, but sometimes less is indeed more.

And just as the length of visits to the pa-tient need to be regulated, so do the expec-tations of the company. Through years of visits, Aunt Lydia may have come to expect that when she arrives, she will be served a piping hot coffee and a tray full of danishes. But should the patient really be expending their limited energy on making sure that ev-erything’s ready for the visit? Of course not. And neither should it be a burden that falls to a caregiver who already has his or her hands full assisting the patient. Best-case scenario: The intermediary kindly asks the visitor—who is probably looking for a way to help anyway—to pick up refreshments on his or her way.And while new ground rules are being

established already, a cancer patient prob-ably doesn’t need to be subjected to the stress of having overnight houseguests, so it is absolutely appropriate to ask guests to stay at a local hotel or at someone else’s house. This may cut against many folks’ core idea of Southern hospitality, but it’s important to remember that this is not busi-

ness as usual. The patient has cancer, and some basic notions may need to be revised. Good Cop/Bad CopMost visits are going to be fine, welcome

and happy experiences; however, it might help to put the word out that shorter, less draining visits would be appreciated. Should you get that visitor who just pops in “for a quick hello” but then misses the signs that he or she needs to leave, that’s when a pre-arranged signal with the intermediary (e.g., “I thought we might get some rain today”) can prove extremely useful. That way, the patient can let the intermediary know that it’s time for this visit to end, even if the visitor remains oblivious to the fact.

Obviously, the last thing the patient (or intermediary) wants is to be rude to those who mean well and want to visit, so it’s al-ways good to employ as much tact as pos-sible so they’ll come back again. Still, it’s equally important to establish some guide-lines so that visits achieve the desired goal of helping the patient. Fighting cancer is often a family affair, and one that requires everyone to pitch in and lend a hand—even Aunt Lydia.

TBC

w w w . t o u c h e d b y c a n c e r m a g a z i n e . c o mwww.facebook.com/tbcmag twitter.com/TBCmagazine

“Cancer’s going to SUCK … but you can do it.” —Glenna Maynus, Quick Question, Page 12

“I’m sure somewhere there is an oncologist who is an atheist, but I think you get something

out of it spiritually. I think oncologists may actually

be needy people, and what satisfies that need is giving ourselves to our patients.”

—Dr. Sharon Taylor, The Power of Mind & Body

Page 35

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7 Touched by Cancer www.touchedbycancermagazine.com 7

ABO

UT

Touched by Cancer magazine is a free, bimonthly publication focused on helping anyone who has been touched by can-cer and is being treated here in Central North Carolina. Our

goal is to be a unique resource that provides practical information, inspirational stories and useful insight to those who are battling cancer and/or to those assisting a friend or loved one through this difficult time.

A cancer diagnosis is overwhelming in every aspect, including trying to sort through the mountain of information that is available, and Touched by Cancer exists to assist you in navigating through that information overload. There are a million questions going through your head, and we want to help answer as many of them as possible so you can concentrate on getting through this.

Touched by Cancer is not a medical journal, and the stories, feel-ings and/or experiences included should in no way, shape or form replace the specific recommendations or treatments that are being provided by your doctors and medical professionals. We’re here to let you know what’s going on in the area that may be of interest, to keep you informed of what cancer-related news is being made in the area and to offer insights from patients, doctors, administra-tors, patient advocates and other industry insiders whose knowl-edge and experience may benefit you and your family.

We created this magazine to help you collect vital information so that you can be an active participant in your treatment and keep your life as close to normal as possible. Cancer is no longer a death sentence—we’re here to help you make the most of your life.

Disclaimer: The information presented in Touched by Cancer and on www.touchedbycancermagazine.com is meant to be informational and inspirational and is not intended as a substitute for personalized advice provided by your health-care professionals. Never ignore professional medical advice or delay treatments because of something that you have read in Touched by Cancer or on www.touchedbycancermagazine.com. The editorial content of Touched by Cancer is written and edited without the influence of advertisers or other corporate entities. The opinions expressed are solely those of the writer or the quoted source within and do not necessarily represent those of the magazine, its advisory board, Obi Publications LLC or any of the magazine’s sponsors. Touched by Cancer is not responsible for unsubstantiated claims made by recognized authorities, nor is it responsible for any claims made within advertisements. Although the information included is carefully checked for accuracy, Touched by Cancer, Obi Publications LLC, the writers, contributors, advisors, sponsors and any agents otherwise attached to the publication shall not be held responsible or in any way liable for any errors, omissions or inaccuracies, either written or implied, for any reason whatsoever, including negligence.

All information included is the property of Touched by Cancer magazine and cannot be used, copied or reprinted without express written permission.

Cancer


Touched by Cancer is a publication of Obi Publications LLC and is published six times per year, in January, March, May, July, September and November, for distribution in the United States only. Touched by Cancer, P.O. Box 58246, Raleigh, NC 27658-8246 USA. Telephone: 919-278-2680.

CancerFREE

FREE

A practical guide to living with cancer

GRATITUDE

Things to be Thankful For

When to Dial 911

Take This Copy Home

www.touchedbycancermagazine.com

Triangle Edition • Sept/Oct 2011

the CancerandjourneySurvivor Maria Gruskin and the

Raleigh Roundup

10

EDITORIAL ADVISORY BOARDPam Blondin Executive Director N.C. Triangle Affiliate Komen for the Cure

Elizabeth Campbell, M.D. Medical Oncologist Cancer Centers of North Carolina

Adrian Dixon, M.Div. Director of Spiritual Care Duke Raleigh Hospital

Gary Grubb, M.D., M.P.H. Patient Advocate

Dan Jones, Chief Chapel Hill Fire Department

Margaret King Chief Operating Officer Wake Radiology

Mary Lawrence President & CEO Cornucopia House

Emmeline Madsen, M.P.H. Outreach & Support Services Manager Rex Cancer Center

Diane Moore Executive Director Striving for More April Perry, RN, APN, M.Ed. Clinical Educator Duke Homecare & Hospice

Paulomi Raiji, Ph.D. Counseling Psychologist Lepage Associates

Alan Scott Director of Design and Marketing

Walter L. Shepherd President & CEO Comprehensive Cancer Consulting Services Liz Sherwood, M.S., ANP Suvivorship Coordinator Carolina Well UNC Lineberger

Sharon Taylor, M.D. Medical Oncologist Duke Raleigh Hospital

Brenda Wilcox, RN, BSN, OCN Oncology Patient Navigator Duke Hospital Raleigh

ON THE COVER:Maria Gruskin began volunteering with the Red Sword Guild because of her mom. Then she was diagnosed.

AssociAte Publisher/editor Mike Macdonald [email protected] 919-278-2682 stAff cover PhotogrAPher Tom Edwards New Image Studio

contributing editors Adrian Dixon Amelia Fisher Diane Moore April Perry Phill Powell Doreen Stein-Seroussi Danielle Taylor Ginny Turner

EDITORIAL

Ransom Keeter Sales Representative [email protected] 919-278-2681

Kelly DeCarlucci Sales/Administration [email protected] 919-278-2680

SALES

Sept/Oct 2011 Vol. 2, No. 5

7_About.indd 7 9/22/2011 2:18:43 PM


Until that magical day comes where we can virtu-ally cure (or at least ren-der a chronic illness) every type of cancer, I am con-tent to report that we are going to have millions of people steadfastly fighting this disease tooth and nail each and every day. And

I’m not just talking about the people in active treatment who have no choice but to fight, or the post-treatment survivors who were made unwilling participants in this battle; I’m also talk-ing about the countless people who have suf-fered along with their diagnosed loved ones; the doctors, nurses and staff who hold the patients’ hands; the researchers who quest for advances that are measured not in steps but in millimeters; and all the other advocates out there who work tirelessly and/or donate time and money just because they believe it has to be done.

I was recently a guest at the V Foundation’s gala (an incredible event I am going to champion every chance I get) and was brought to tears several times during the powerful program. It was a combination of the stories being told, the passion from those involved, the generosity of those attending and just the overall feeling that somehow, some way, because of wonderful people like those I was surrounded by, this thing is going to get done and cancer will become to future generations what polio is to ours.

In addition to demonstrating my opposition to the disease by donning a tuxedo and attend-ing soirees with my fetching bride, I also volun-teer with a peer connect program through the Cornucopia Cancer Support Center. Recently I was “assigned” to speak with a woman who had been fairly recently diagnosed, and I was told she was “feeling a little scared.” The day I first talked to her, she had just received her third round of

chemo … but you would have thought she had just won the lottery. She was laughing and mak-ing jokes and was so upbeat and positive. She was even asking me if I knew of places where she could volunteer right now to help others who aren’t as fortunate as her. Wow! I may need to start calling her so she can support me.

The point of those two stories is to say: Cancer is such an emotional disease that it very often moves those it touches—the diagnosed as well as the people who care about them—to action. And those actions are made all the more power-ful by the conviction and passion of those who carry them out. There are going to be people who look at the front cover of this magazine, see the words cancer and gratitude together and think we’re idiots. But there will be others who well understand it, and in the coming pages we’ll try to make you appreciate how you too can find traces of good in a cancer journey.

I’ve heard people say they wouldn’t trade their cancer journey for anything, a statement that initially makes my right eye twitch, as I can easily fantasize about having my exact life today minus all the complications cancer injected. But then I stop and think. Without cancer my life would be different. I wouldn’t have the same kids. I wouldn’t have the same battle-tested fam-ily that carried me through. I wouldn’t have the knowledge I have, nor would I have the empathy that makes me yearn to reach out and help total strangers. Am I happy I had cancer? Well, those are tough words to spit out. Am I grateful for my life today, which includes being a cancer survivor? Yeah, you bet your tuckus I am.

Circle the Wagons!

TBC

Mike Macdonald919-278-2682

[email protected]

f r o m t h e e d i t o rf r o m t h e e d i t o r

The great thing about cancer (did I seriously just write those words?!) is that the disease as a whole is so absurdly horrific that it leaves little room for debate. I think most of us can agree it seriously needs to go away—way more than even boy-band reunion tours or people who cause delays on I-40.

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Diego was diagnosed with cancer 18 tearful moments ago.

Dedicated to the Fight at Cancer Centers of North Carolina.Cancer survivors know that every day and every moment are precious. The physicians of Cancer Centers of North Carolina believe our patients should have

access to the most advanced and integrated cancer care possible, right here in their community. As the largest and most geographically diverse practice

in the Triangle, we offer the best, most advanced therapies, specialists in various areas of adult oncology, access to cutting-edge clinical research, and the

personal care and support necessary to help patients and their families get back to the business of living.

We have partnered in our fight against cancer with US Oncology, America’s largest cancer fighting

organization. With access to the knowledge and resources brought by USON, we are united in our

mission to provide the best care and the best, most durable outcomes possible—right here in your

community, and often, right in your neighborhood. To learn more or to schedule an appointment,

visit www.CancerCentersofNC.com.

Raleigh (919) 781-7070 | North Raleigh (919) 431-9201 | Cary (919) 854-6900 | Cary (Radiation) (919) 854-4588 | Clayton (919) 781-7070 | Dunn (910) 892-0070

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f o c u s g r o u p

Col. Brooks HarrisI’m a retired Marine officer; I served 31 years in the Corps. I turned 80 in Sep-tember, which is exciting because 2.5 years ago I didn’t think I was going

to reach this ripe old age. I was diag-nosed with Merkel cell carcinoma; that’s a rare and really aggressive form of skin cancer. The doctor gave me a 30 percent chance but here I

am. I go to see my dermatologist every few months, and she finds basal cell carcinomas on my face, and I go to the clinic for Mohs surgery, where they remove them. If you get clear margins you go home; if not they cut more. I’ve had 14 of those. My wife calls it my cheap facelift. I also had rectal cancer 20 years ago. I was treated with chemo and radiation and it never returned, but the Duke doctors speculate the massive doses of radiation caused the Merkel cell cancer. The care I receive has been tremendous. It’s beginning to look like I’m going to live!

Darlene SnodgrassIn 2005, my cancer—and I like to stress this to the politicians out there—was found only due to a mammogram. I got them yearly be-cause my mom is also a survivor. If it hadn’t been for the mammogram the doctor wouldn’t have found it. I had two cancers, lobular and ductal lobular, which is a little more aggres-

sive. I had a skin-saving TRAM procedure. Basically they do a tummy tuck. They go under your skin and take whatever fat you have, remove the nipple, take out the breast tissue and replace it with stomach fat. I had major complications from the TRAM and ended up with seven major surgeries because the wound in my stomach never closed, but my breast healed fine. I was out of work for nine months in-stead of six weeks. My mom and I were both 55 when we were diagnosed, and she’s going to be 88 in November. She had the best attitude toward cancer, and because of her I was positive as well. I can’t do enough to tell people that you can recover from cancer, and a lot of that is your attitude.

Keith AdamsI’ve been a police officer for 22 years. Two years ago I was diagnosed with multiple myeloma, which is an incur-able blood cancer. But my last two blood tests show that I am cancer-free. I don’t have cancer in my bones or in my blood! I’m proof that mir-acles happen every day. Two years ago I was getting really sick with

weekly ear and sinus infections, so I’d go to the doctor and they’d treat them. As a police officer we have to take fitness tests to maintain our certification, and that year I did really well, but afterward my back was absolutely kill-ing me. My doctor wanted me to see a hematologist, but before I could get there I ended up in the emergency room for my back, and the ER doctor was the first one who ever mentioned cancer. Multiple myeloma attacks the bone marrow, so my back hurt from six compression fractures. I had chemotherapy and a stem cell transplant, and now I’m in full remission. My wife and children were everything to me, along with my church family. Without them, I don’t know if I would have made it through.

Glenna MaynusI’m a five-year breast cancer survivor. In 1978, my mother found a lump in her breast that the doctor said was nothing. Later it turned out to be ma-lignant, so I always said if that hap-pened to me, I would find someone to pay attention to me. Five years ago I felt something wasn’t right, so I went to my GYN, and then for a mam-

mogram, and then in for ultrasounds and they still didn’t see anything. So finally a surgeon did a biopsy, and even with that the pathologists couldn’t agree. Finally the doctor called and told me to bring a friend with me, and I knew. It was microinvasive ductal carcinoma of the breast. I had a mastectomy and my prognosis was spectacular. I chose to go with chemo because that improved my chances of it not coming back from 86 percent to 92 percent. I started with the DIEP reconstruction procedure, which was a partial fail-ure, then finished with a latissimus dorsi flap procedure, so it took two years to heal. The failure is rare, but it happens.

T o participate in a future focus group, please contact Mike Macdonald at 919-278-2682 or [email protected]. We are always searching for a diverse

group of people who have been touched by cancer in some way, whose stories will assist those in various stages of a journey.

10 Touched by Cancer

T here are about 200 different types of cancer—most have distinctive characteristics and qualities and thus are treated with widely varying proto-

cols. Each issue of Touched by Cancer will feature a diverse group of people who have survived (including those actively being treated) different types of cancer and/or have been caregivers in similar situations.

TBC

f o c u s g r o u p

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