CATCH THE CHILL GET OUTSIDE THIS WINTER

HEALING ARTS TAP YOUR INNER ARTISTE FOR BETTER HEALTH

SHARING: FACE CANCER WITH STORIES

t er-free movemen into Albertas canc
WINTER 2011

Kate Watt gets physical in a new tness challenge for the cure
Does this pose ring a bell? See page 3.

TALES WORTH TELLING

How our stories help us cope

WORD GETS OUT

Why I didnt want to talk about my cancer

CANADIAN PUBLICATIONS MAIL PRODUCT AGREEMENT #40020055 Non-deliverable mail should be directed to: 10259 105 Street, Edmonton, AB T5J 1E3

Thank you
Thank you to hundreds of thousands of Albertans who joined the movement for cancerfree lives by donating, hosting fundraising events or participating in a challenge event. You made it possible to invest $25.8 million this year in cancer research, prevention and care, right here in Alberta. Thank you for being part of Albertas cancer-free movement. See how you drive progress in our Report to Donors: albertacancer.ca/ report2011

CONTENTS
ON THE COVER: Bust a Move participant Kate Watt recreates the 1981 book cover that launched an aerobics tness craze. PHOTO: Aaron Pederson, 3TEN

WINTER 2011 VOL 2 No. 3

WINTER SPOTLIGHT
SHARING: Face Cancer with Stories

22 TALES WORTH TELLING 26 WORD GETS OUT

20

Stories are how we cope with cancer experiences

I didnt want to talk about my cancer. But its not what you think

28 CANCERVERSARY DEPARTMENTS 4 OUR LEAP 6

40
FOREFRONT
24-hour walk in Fort Chip; Climb of Hope; New Molecular Epidemiology Chair; Great greens; Tumour bank timeline; Distress checklist; Help online; Dogs sniff out cancer

Your cancer is done with! Now what?

30 33

A TIME TO LIVE
It can help your health to spend a little time thinking about the end

A message from the Alberta Cancer Foundation

REMEMBERING ANTHONY
Friends and family honour a young mans life

12 13 14
33

BODYMIND
Try some healing arts in Calgary and Edmonton

FEATURES 16 WHOS THE TOUGH GUY? 20 BUST A MOVE 35 38

Three Alberta men find ways to give back (Its fun!)

SMART EATS
Meat plays a supporting role

Find out about a hot new event coming to Alberta

ASK THE EXPERTS

My dad needs brachytherapy; Can I bust up my exercise routine? PLUS: Top tips to avoid cancer

CHILL WITH WINTER

Get into the cold with winter sports

SCARY AIR
Find out whats in the air you breathe

19

CORPORATE GIVING
Acklands-Grainger gives where it lives

40 RESEARCH ROCKSTAR 44 TOP JOB

50 MY LEAP

Sambu Damaraju has a premier role at a novel research facility

John de Munnik plays the Silent Waiter

Erin Langer helps patients navigate through cancer treatment in Fort Mac

46 STICKY QUESTIONS
44
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Decision-making in cancer care involves ethical dilemmas

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message /

ALBERTA CANCER FOUNDATION

Team Behind the Scene

The word cancer evokes so much fear that someone once asked me if my job was depressing. The answer is anything but. Nothing is more inspiring than the hundreds of thousands of Albertans who make up the Alberta Cancer Foundations movement for cancer-free lives. Every day we meet patients on a difcult journey. And every day we see more people who have completed the cancer part of their lifes journey and are just getting back to the living part. In fact, more than 108,000 Albertans alive today have had a cancer diagnosis in their past. And when I talk to these individuals about their cancer journey, I hear one thing consistently: Im here today thanks to the doctors and nurses. It takes a massive team to support each cancer patient. You will meet just a few of them in this issue of Leap. People like Erin Langner, cancer patient navigator at the Northern Lights Hospital in Fort McMurray. Erin supports patients in those anxious rst days of diagnosis to ensure their path is as smooth as possible (page 45). You will meet Dr. Jackson Wu, radiation oncologist at the Tom Baker Cancer Centre and Dr. Shane Sinclair, spiritual care co-ordinator, who discuss the difcult decision-making and ethical dilemmas involved The word cancer evokes so in caring for a loved one who can no longer make his or her own much fear that someone decisions (page 47). And youll meet Dr. Sambasivarao (Sambu) Damaraju, a once asked me if my job researcher at the Cross Cancer Institute and director of the Alberta was depressing. The Cancer Research Biorepository, the public library of information answer is anything but. for cancer that helps researchers and oncologists push the boundaries of medical knowledge daily here and around the world (page 41). The doctors, nurses, researchers, counsellors, pharmacists and countless others behind the scenes are the vanguard of our movement for cancer-free lives. Its our privilege to support their work. In this issue, youll nd out how you can help. Our cover art, a take-off from the Jane Fonda exercise videos many of us remember, features Kate Watt, fundraiser extraordinaire and volunteer for our newest event, Bust a Move (page 20). Bust a Move promises to be the most fun you will ever have in an exercise class. Its an event involving both a physical and a fundraising challenge. But, this challenge event pays off with fun and positive investments towards progress. I hope youll join us.

TRUSTEES Leslie Beard, Edmonton Angela Boehm, Calgary Heather Culbert, Calgary Steven Dyck, Lethbridge Dianne Kipnes, Edmonton Katie McLean, Calgary John J. McDonald, Edmonton John Osler, Calgary Brent Saik, Sherwood Park Prem Singhmar, Sherwood Park Heather Watt, Edmonton Vern Yu, Calgary

Myka Osinchuk, CEO Alberta Cancer Foundation

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WINTER VOL 2 No. 3

ALBERTA CANCER FOUNDATION EDITOR-IN-CHIEF AND PUBLISHER: LEE ELLIOTT ASSOCIATE EDITOR: PHOEBE DEY EDITORIAL ADVISORY COMMITTEE DR. PAUL GRUNDY, Senior Medical Director, Cancer Care Alberta Health Services DR. HEATHER BRYANT Vice-President, Cancer Control Canadian Partnership Against Cancer DR. STEVE ROBBINS Director, Southern Alberta Cancer Research Institute Associate Director, Research, Alberta Health Services, Cancer Care CHRISTINE MCIVER CEO, Kids Cancer Care Foundation of Alberta VENTURE PUBLISHING INC. PUBLISHER: RUTH KELLY ASSOCIATE PUBLISHER: JOYCE BYRNE EDITOR: MIFI PURVIS ASSISTANT EDITORS: CAILYNN KLINGBEIL & MICHELLE LINDSTROM ART DIRECTOR: CHARLES BURKE ASSISTANT ART DIRECTOR: COLIN SPENCE ASSOCIATE ART DIRECTOR: ANDREA DEBOER PRODUCTION MANAGER: VANLEE ROBBLEE PRODUCTION COORDINATOR: BETTY-LOU SMITH DISTRIBUTION: HEATHER MORRISON CONTRIBUTING WRITERS: Tom Cantine, Stacey Carefoot, Linda Carlson, Carol Christian, Jennifer Cockrall-King, Katherine Fawcett, Annalise Klingbeil, Cailynn Klingbeil, Michelle Lindstrom, Debbie Olsen, Lisa Ricciotti, Carol Sekulik, Robin Schroffel, Kelley Stark CONTRIBUTING PHOTOGRAPHERS AND ILLUSTRATORS: 3TEN, nicholas david photography, Heff OReilly, Greg Halinda, Pete Ryan, Kelly Redinger ABOUT THE ALBERTA CANCER FOUNDATION The Alberta Cancer Foundation is Albertas own, established to advance cancer research, prevention and care and serve as the charitable foundation for the Cross Cancer Institute, Tom Baker Cancer Centre and Albertas 15 other cancer centres. At the Alberta Cancer Foundation, we act on the knowledge that a cancer-free future is achievable. When we get there depends on the focus and energy we put to it today.

The Alberta Cancer Foundation is more than a charityits a movement for cancer-free lives, today, tomorrow and forever.
Its a movement of those who know a cancer-free future is possible and who wont settle for some day. Its a movement of Albertans who stand with those who have no choice but to stand up to cancer. Its a movement of those who know something can be done and are willing to do it. For those facing cancer today, in honour of those lost to cancer, and for generations to come, we promise progress.

Leap is published for the Alberta Cancer Foundation by Venture Publishing Inc., 10259-105 Street, Edmonton, AB T5J 1E3 Tel: 780-990-0839, Fax: 780-425-4921, Toll-free: 1-866-227-4276 circulation@venturepublishing.ca
The information in this publication is not meant to be a substitute for professional medical advice. Always seek advice from your physician or other qualied health provider regarding any medical condition or treatment.
Printed in Canada by Transcontinental LGM. Leap is printed on Forest Stewardship Council certied paper Publications Agreement #40020055 ISSN #1923-6131 Content may not be reprinted or reproduced without permission from Alberta Cancer Foundation.

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forefront /

PREVENT, TREAT, CURE

BY MIFI PURVIS AND MICHELLE LINDSTROM

Online Support
A cancer diagnosis can be isolating and isolation

Tumour Bank Timeline

The Canadian Breast

is not good for anybodys health. Distress is a health indicator too, and many cancer patients (and their doctors) dont know how to get help. Others people who live in rural areas, or whose shyness, health or schedules dont allow it are simply unable to attend a professionallyled support group. CancerChatCanada is meant to address these gaps in care. Its an initiative to provide online support to cancer patients and caregivers. CancerChatCanada accepts registrations from patients and, in groups of six to eight, oers facilitation from a professional oncology counsellor once a week for 90 minutes in a live Internet chat room. All you need is a computer and Internet connection. Groups generally meet online for about 12 weeks. Groups may be formed by type of cancer or by similarity of treatment points. There are groups for people caring for someone with cancer, groups for young women survivors of breast cancer, and cancer patients in treatment among others. The site is a national initiative funded primarily through the Canadian Partnership Against Cancer, with partners across Canada including Alberta. If youre interested, visit the website to complete a registration form and nd out about upcoming groups. Once an enrolment co-ordinator has contacted you and gured out which group is best for you, he or she will provide you with an email, password and instructions for logging in to your group chat. Visit cancerchatcanada.ca. Its easier when youre not in it alone.

Cancer Foundation Tumour Bank collects, properly stores and documents information for all donated tumour tissues. Researchers in Alberta (and elsewhere) can access these tissues for research. Its a growing initiative, and heres how it developed.

1999 Four of us got together, all of us breast cancer-treating clinicians: myself, Judith Hugh, John Danyluk and surgeon Kelly Dabbs. With no budget, some support from our institutions and just good will to go on, we started what we called the Breast Research Tissue Bank. Dr. John Mackey

2000 I joined the

Cross Cancer Institute in November, 2000. They werent looking to hire someone exclusively for the tumour bank. I came here as a researcher and then my interaction with Dr. John Mackey, Dr. Brent Zanke (thendirector of the Cross) and others culminated the creation of a tumour bank. Dr. Sambasivarao Damaraju

2000 We got a substantial amount of funding from the Alberta government and the Alberta Cancer Foundation to set up a formal tumour bank, to do it right instead of a shoestring budget with four friends who had these ideas over coffee. That money allowed us to set up a professional, worldclass tumour bank. The rst hire to the tumour bank was Dr. Damaraju. Dr. Mackey

2000 A local team

created the Database for Online Retrieval and Analysis. The database was developed in consultation with the physicians, scientists, technologists and others. It captures the clinical, pathological, diagnostic, treatment and followup information. It keeps evolving based on the needs and data that we collect and deposit. Dr. Damaraju

See abtumorbank.com for more information. 6

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Top 5 Myths of SURVIVORSHIP

Its a great thing to live through cancer and be able to tell about it. But

Diagnostic Dogs

survivorship comes with its own set of issues nancial, physical and emotional. Calgarys psychosocial cancer researcher Janine Giese-Davis, PhD identies some of the myths of survivorship. THINK POSITIVE! Sure, positive thought may help health, but its healing power is not fully understood. Patients are exhorted to think positive all the time, making them feel culpable if they dont and making them think that expressing normal emotions, such as fear and sadness, is off-limits. NO NEWS IS GOOD NEWS. If patients dont bring up difcult subjects like sexuality with their doctors, it mustnt be a problem, right? Wrong. Discussion about how treatment has impacted intimacy is particularly difcult. GET RIGHT BACK TO ROUTINE. Returning to work can be difcult. It can take a long time to get back into full-time hours, and even then, chemo brain can make people feel like they are underperforming. And theres a lot of lost income to make up. ITS EASY TO JUMP BACK IN. Sure, living through cancer is terric, but the sudden shift from patient to regular guy can leave people feeling abandoned and afraid. Life has gone on and some survivors feel socially isolated. IT WONT COME BACK. Cancer might return, and people are living longer with and after cancer. The ve-year post-cancer mark is no longer the magical marker, if it ever was. Learning to live with uncertainty is one of the burdens of survivorship.
Studies at Germanys Schiller-hhe Clinic have

gone to the dogs. But maybe its not a bad thing. Scientists at the Schiller-hhe, which specializes in lung disease, have been working with a dog trainer and a few animals to detect the presence of lung cancer in patents breath samples. In one study of 200 samples, the trained dogs detected cancer with 72-per-cent accuracy, even differentiating between long-time lung cancer patients samples and those of the newly-diagnosed. Mechanical sniffers are less accurate and results can be affected by what the patient has eaten or drunk, which didnt seem to bother the dogs. Check it out: www.youtube.com/watch?v=Z7ByM0zGq24

2001 Dr. Damaraju cowrote and published a paper about the human genome sequence, addressing the concept of personalized therapies and medicines. To address and personalize the medicine, we needed well-run, annotated tumour banks. This is how the rst highquality tumour bank concept was born. Dr. Damaraju

2005 The Canadian Breast Cancer Foundation Prairies/ NWT Chapter and the Alberta Cancer Board launched the Canadian Breast Cancer Alberta Research Tumour Bank. This consolidated Calgarys Research Tissue Repository and efforts of cancer tissue collection in Edmonton. It was the rst provincial tumour bank in Canada.

2007 We started
distributing specimens from the bank in 2007 as an open-access bank where samples were accessible for all researchers. Until that time, we were banking and using them for our own research. Since then we have given away 3,000 samples. Dr. Damaraju

2009 Because of the

2011 As of October 3, funding from Alberta the CBCF tumor bank Innovates Health [sic]had 2,146 samples Solutions and the of breast tumour tissue Alberta Cancer among many other Prevention Legacy types of biological Fund, we were able to materials available for create a larger researchers to access umbrella called in its openthe Alberta access Cancer Research bank. ore Read m Biorepository. M.L. about Dr. Dr. Damaraju ju on

Damara page 40

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Great Events
This year two out of hundreds of relatively

new events raised money for the Alberta Cancer Foundation, (benetting The Cross Cancer institute) in particularly notable ways. In the process, people came together to enjoy accomplishments and camaraderie and have some fun. Every year in late June Darlene Cardinal, a proud lifelong resident of Fort Chipewyan, walks back and forth along the four-kilometre trail between Cut Rock and Fort Chip for 24 hours to raise money for the Alberta Cancer Foundation. In 2011s Cut Rock Walk Cardinal and 121 volunteers (some on support, some fellow walkers) raised more than $85,000 in a community of just 1,000 people. This was the third annual walk and the biggest fundraiser yet, thanks in part to a large donation

from the Treaty 8 chiefs who met in Fort Chip in 2011 for their annual gathering. The annual Rock n Roll Climb of Hope Run is a ve-kilometre fun run that takes participants around Edmontons Victoria Golf Course and over four sets of the Citys legendary towering river valley stairs. In its third September, 2011 brought the events running total to $285,000, more than a quarter of the way to the organizers goal of $1 million.

Give the gift of a lifetime.

In September of 2005, Elma Spady and 30 friends celebrated a tugboat launch in Pigeon Lake Alberta. The day celebrated friendship and the vibrancy of 63-year-old Elma, a lawyer, who had built the replica of New York Harbour tugs by hand in her garage. Elmas friends gathered with her again just three months later as she died of pancreatic cancer. But her ability to push through challenges continues. Elma funds cancer research with her legacy. She knew that if one small woman can build a boat, together, we can build a future without cancer.

To learn more about leaving a legacy to a cancer-free future, please contact: Derek Michael 780 643 4662, 1 866 412 4222 derek.michael @ albertacancerfoundation.ca

pady Elma S

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More Medicine in the Hat

Medicine Hats Margery Yuill, pictured here,

was a nurse, a community activist and a loving mom. She was instrumental in setting up the local YWCA and supported the Red Cross and the Salvation Army before her death in 1965. In 2011, her son businessman Bill Yuill made a $2-million donation through the Yuill Family Foundation to the Alberta Cancer Foundation in honour of Margerys memory. Family friends Gerry and Beverly (Simmons) Berkhold, donated $1 million, too. These donations allow the facility, now called the Margery E. Yuill Cancer Centre, to offer a

clinical trials program, making Medicine Hat the rst smaller community in Alberta to offer trials. Clinical trials evaluate new cancer drugs and other treatments for safety and effectiveness. They provide researchers with valuable information and offer patients the chance for a cure or an improvement in quality of life that cant be attained through standard treatments. The clinical trials unit at the Margery E. Yuill Cancer Centre will be able to offer as many as six trials at a time, adding 20 to 30 new patients each year. This is the chance of a lifetime, says Dr. Marc Trudeau, Medical Director of the centre. It will mean the people of Medicine Hat and surrounding areas will have access, through clinical trials, to cancerghting drugs they would not normally get access to. We are extremely grateful for this opportunity.

Pick up your free copy of My journey, now available at centres throughout the province. Tom Baker Cancer Centre:

New patient information sessions A  lbertaCancerFoundationoffice

Cross Cancer Institute:

New patient clinicis A  lbertaCancerFoundationoffice Cancer Information Centre

For those facing cancer today

Manage your cancer-care and navigate the health care system with a patient journal from the Alberta Cancer Foundation.
The more information you can track and communicate with your care team, the more they can ease your cancer journey.

Associate cancer centres:

Grande Prairie Cancer Centre Central Alberta Cancer Centre (Red Deer) Medicine Hat Cancer Centre Jack Ady Cancer Centre (Lethbridge)

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Green Envy
Few foods pack the nutritional punch of broccoli, but not everyone is enthusiastic about this member of the cabbage family, loaded as it is with cancer-busting phytochemicals and polyphenols. Heres a great recipe that turns doubters to believers. Toss in three ounces of cooked chicken per person and serve beside brown rice for a fast meal.

Rockin Broccoli
4 cups of cut-up fresh broccoli (including thick stems, peeled and sliced) 1 Tbsp butter 2 Tbsp canola oil 1 Tbsp brown sugar 1 Tbsp soy sauce 2 tsp cider vinegar 1/4 tsp ground black pepper Pinch hot pepper akes 2-4 cloves garlic, minced 1/2 cup chopped unsalted cashews

Directions In a steamer, or in a large pot, with a three centimetres of water at the bottom, cover and steam the broccoli for about six or seven minutes, until tender-crisp. Drain, and put broccoli into a wide, shallow serving dish. Bring everything else to a boil in a small pot, stirring constantly with a fork, then remove from the heat. Pour the sauce over the broccoli and serve immediately.

TRY IT TODAY

Find more health in apple magazine

More health More wellness

More Alberta

apple offers you and your family everyday health and wellness information.
Look for apple at 1,500+ locations across Alberta. Visit applemag.ca and follow us on Facebook at facebook.com/applemagca

More insight More community

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8/2/11 2:31:59 PM

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Check Your Distress at the Door

When health-care providers meet their patients,

one of the rst things they do is assess patients vital signs: body temperature, heart rate, blood pressure respiratory rate and pain level. But theres a move afoot to measure a sixth vital sign: distress. Dr. Barry Bultz, PhD, is the director of the psychosocial resources and program leader of psychosocial oncology, supportive, pain and palliative care at the Tom Baker Cancer Centre in Calgary and the faculty of medicine at the University of Calgary. He was part of the research team that launched a Personal Well-being Checklist, a new tool that helps health-care providers assess a patients distress. Distress encompasses feelings of discomfort or upset commonly experienced by cancer patients. Distress is rooted in emotional, social, spiritual, practical and physical concerns. Managing a patients distress improves quality of life. In a pilot program, willing cancer patients completed the Well-being Checklist devised by Bultz and his team just before meeting with their doctor for the rst time at the Tom Baker or Holy Cross centres. Patients answered questions regarding nances, pain, nutrition and more to determine their levels of distress. A copy of the completed checklist also went on le for their doctor to review and address during appointments. The checklist study was the beginning of a national program to assess and address distress in cancer care. As a standard of care, were trying to get professionals to recognize that the health-care system is much more than

just treating the cancer, its about treating the patient, Bultz says. The checklist helped standardize a way to screen patients at cancer centres. It also conrmed that distress should be recognized as the sixth vital sign. The original version of the checklist asked patients, for example, to rate their level of pain and fatigue in the past week from one to 10. It also asked them to check off daily concerns, such as getting groceries and nding transportation, for example. Since 2009, Bultz has been using an evolved version of the Personal Well-being Checklist in his clinical practice at the Tom Baker. I screen patients routinely because it helps me better understand the challenges that theyre facing. The checklist helps determine what additional resources may help patients cope. The research is ongoing and it is taking hold in clinics around the world, says Bultz. Were always trying to improve clinical care and advance our research. M.L. See 6thvitalsign.ca to see where the study began. Expect to read more in upcoming issues of Leap about how screening for distress in cancer patients is becoming a standard practice in cancer clinics.

Take a Chair
QUITTER!
Is it time? Assess your smoking and nd ways to quit that include a help phone, help online and a listing of quitsmoking groups facilitated by an experienced leader. Read some success stories that will inspire you. Visit albertaquits.ca. albertaquits.ca
A relative newcomer to the eld of cancer research, molecular epidemiology

promises to increase our understanding of how environmental and genetic risk factors impact the development of cancer at the molecular level and contribute to the growth or, as the case may be, the prevention of the disease. At the cutting edge of this eld is Dr. Hans Vogel, pictured left,who was recently named the Lance Armstrong Chair in Molecular Cancer Epidemiology funded by the Alberta Cancer Foundation and the University of Calgary. By integrating molecular ways of studying cancer with epidemiological methods, scientists like Vogel hope to increase their understanding of how lifestyle and cancer risk are related, and lead them to earlier detection, improved treatment and improved outcomes. Dr. Vogel joined the faculty at the University of Calgary in 1985 and hes been a full professor since 1991. The advent of the new research chair promises to advance Dr. Vogels extensive work in molecular cancer epidemiology and to solidify the University of Calgarys ability to attract and retain the best new researchers and students in the eld.

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bodymind /

MAKING POSITIVE CONNECTIONS

Expressive Healing
BY LINDA E. CARLSON
The theme of this issue of Leap is how cancer stories help us cope with disease. Telling stories is a central human trait; for millennia our ancestors sat around campres and repeated the narratives that helped them make sense of their experiences. They passed on crucial elements of our collective identity to us. One program offered through Alberta Health Services Cancer Care builds on the idea that narratives and other forms of expression can help people cope. In Edmonton at the Cross Cancer Institute, its called the Arts in Medicine program, and at the Tom Baker Cancer Centre its been known as Healing Through the Creative Arts. The general idea behind both of these programs is that expressing yourself through creative outlets can be a very healing process another way to expressing what it felt like to be diagnosed with cancer, and subsequently discuss make sense of your journey and work through the how elements of that experience manifest in their drawings. Not only is this typically a fulfilling exercise, there is research to back up the feelings, thoughts, worries and anxieties you might have. In both programs, various creative modalities benets of creative expression. The best-researched creative avenue is expressive are used, including expressive writing, journaling, writing. In the 1980s, James Pennebaker at the University of Texas was the first drawing, painting, sculpting, movement to music and to measure the effects of single sessions of expressive writing of ones deepest thoughts and feelings. He found that there vocalization. The instructors a r e s o c i a l w o r k e r s , One study of the benefits of expressive were significant benefits to expressive writing, particularly when it involved the artists, art therapists and writing found that women who wrote construction of a coherent story together with psychologists. their deepest thoughts about cancer the expression of negative emotions, which The structure of each reported significantly decreased many patients will often keep to themselves program varies but, for physical symptoms. rather than express out loud. example, at the Tom Baker Outcomes have shown improvement within this framework in the general Cancer Centre in each of six weekly classes, participants get the opportunity to think about their own life story population, with people reporting improved physical health, psychological welland map it out in various ways, from drawing out a being, physiological functioning (such as improved immune function) and generally lifeline of key events, to moving to music in a manner improved day-to-day functioning. One study that looked at the benefits of expressive writing for breast cancer that represents various feelings. They keep a journal of thoughts and feelings that can include diary-style patients found that women who wrote about their deepest thoughts and feelings about breast cancer over four sessions reported signicantly decreased negative entries, poems, stories and drawings. The programs are not only a venue to create various physical symptoms compared to those who just wrote about the facts of their illness. forms of expression, but also a safe place to share the The expressive writing group also had signicantly fewer medical appointments for experience of creating; afterwards, exercise group cancer-related problems. So the recommendation is to sit down, relax and open up to your creative juices. members have the opportunity to discuss what came up for them in thinking about and participating in the Whether you join an arts program at a cancer centre or elsewhere, or write, draw, creative activity. For example, if people were drawing a dance and sing about your feelings in the privacy of your own home, it can do you lifeline of key life events, they might share how thinking good in many ways. of these brought back certain feelings or memories that were important in creating the identity and values Dr. Linda Carlson (lindacarlson.ca) is the Enbridge Chair in Psychosocial Oncology at the they have today. Participants might paint a picture University of Calgary and a clinical psychologist at the Tom Baker Cancer Centre. 12

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cookingsmart /

FOOD FOR LIFE

Focus on your plate

BY KAROL SEKULIC
Canadian research suggests that men tend to eat more meat than women. Research also strongly suggests that the emphasis on your plate should be more vegetables and fruit, and foods that are mainly of plant origin. For most of us, eating more vegetables, fruit and whole grains can help reduce the risk of cancer and diabetes and can also help manage weight. Eating meat and other high protein foods does have an important role in our diet. According to Canadas Food Guide, adults need to eat two to three servings of meat and alternatives per day. One serving of meat and alternatives includes: 2 oz (75 g) meat or cup (175 mL) lentils or two eggs. Meat and alternatives provide nutrients such as protein, iron and vitamin B12. Eating meat in moderate amounts is healthy. But studies show that people who eat a lot of red meat (such as beef, pork and lamb) tend to eat fewer foods of plant origin, so they benet less from the cancer-protective properties. Evidence shows that foods of plant origin, such as the non-starchy vegetables, fruits and whole grains and legumes (cooked, dried beans, peas and lentils) can be protective against cancer. If you go out to eat, the amount of food served, including meat, is usually much larger than is

Couscous Youll Like

2 Tbsp (60 mL) canola oil 2 cups (500 mL) whole wheat couscous 2 cups (500 mL) water 1 can (500 mL) chickpeas 1 cups (398 mL) kernel corn cups (60 mL) red onion, diced 3 medium tomatos, diced 1 bunch green onion, chopped cup (125 mL) parsley or cilantro, chopped cup (60 mL) vegetable oil cup (60 mL) lemon juice, fresh 1 tsp (5 mL) salt tsp (2.5 mL) pepper In a medium pot bring water to boil, add couscous, cover and remove from heat. Let stand until all liquid is absorbed (10-15 minutes). Wash and dice all vegetables. Drain chickpeas and rinse with cold water. Drain corn. Fluff couscous with a fork. In a large bowl, mix red onion, green onion, parsley or cilantro, chickpeas, corn and couscous. In a small bowl, mix oil, lemon juice, salt and pepper. Add oil mixture to the salad and toss gently. Let salad stand for 10-15 minutes. Serve at room temperature as a snack or side dish. Makes 6 - 8 servings

One-Day Sampler
START RIGHT Make your own breakfast sandwich on whole grain bread, skip the bacon and use one scrambled egg instead. Add a tomato, spinach or vegetable spread to boost the nutritional value. Include a piece of fruit or have one later as a snack. MIDDAY At lunch, have a deep green leafy salad with a handful of chickpeas or lentils. Add other vegetables you like and keep it colourful carrots, peppers, cucumber. Add a piece of fruit to the salad or save it for dessert. THE CAPPER For dinner, stir-fry a variety of vegetables with meat (ve oz. for men and two or three for women). Serve over brown rice or whole wheat noodles tossed lightly in canola or olive oil.

recommended. For example, restaurants will commonly serve you 10- or 12-oz steaks, which are equivalent to about four or ve servings of meat and alternatives (nearly two days worth of protein) in one meal. Consider if the meat portion size you eat at home is similar to the ones served in restaurants. According to the World Cancer Research Fund and American Institute for Cancer Research, people who eat red meat should eat less than 18 oz or 500 g (cooked weight) thats equal to three, six-oz steaks per week. Very little of this should be processed meat. Processed meats are smoked, cured, salted or have chemical preservatives. They are, for example, ham, bacon, pastrami, salami, hot dogs and sausages. Poultry, sh, as well as alternatives to meat (e.g. eggs or legumes) are suggested on the other days of the week. If you think you eat more meat than is recommended, maybe its time to switch the focus on your plate. A helpful way to think about it is to keep half of your plate for vegetables and fruit, a quarter for grain products (whole grain, preferably) and a quarter for meat and alternatives. If you dont eat enough vegetables, youre not alone! Most Canadians dont. Try committing to a week of taking the focus off your meat, especially red meat, and putting the spotlight on vegetables, fruit and whole grains.
Karol Sekulic is a registered dietitian with expertise and interest in the areas of weight management, nutrition and communications.

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asktheexpert /

A RESOURCE FOR YOU

THEY OUGHT TO KNOW

From tips to avoiding cancer and busting up your workout to cutting-edge radiation therapy, Leap mines the experts for nuggets of golden health info
BY STACEY CAREFOOT, CAILYNN KLINGBEIL AND MIFI PURVIS

What are the top ve steps I can take to avoid cancer?

Different sources will provide different lists, says Krista Rawson, nurse practitioner at the Central Alberta Cancer Centre. If you are going to limit me to ve, Id say its the common sense ones. The list looks familiar: dont smoke, be sun aware, move your body, eat well and ask your doctor about the latest screening guidelines. Rawson says most of the benets to following these tips are not limited to cancer avoidance, but also help as prevention measures against other diseases, such as heart disease and depression. But its not enough for us to tell people what to do, Rawson says. We have to look for tools that make it a little easier. She says that people need to be supported in their health goals, from their family physician, as well as in the community. Fortunately, Rawson says, as a society we are getting better about understanding how to make goals achievable. Your doctor, nurse practitioner or public health centre can help you nd information about smoking cessation. Smokers typically make a number of attempts before they quit for good. And the motivation has to be there. On a zero to 10 scale, put a number on your motivation. Then the challenge becomes

moving that up a notch or two to improve the outcome. For example, if you want to quit smoking, start planning the trip youll take with the cash youll save. And Rawson says that its likewise necessary to identify the obstacles to your goal and work around them. Where in your day, for example, can you eke out the time to eat better or get more exercise? If you are time-crunched, keep a bowl of apples handy or toss lunch-sized packaged peaches in your bag before work. Its a good idea to examine what actually saves time. It takes 10 minutes to chop up some food for the slow cooker, or 10 minutes to wait in line at the drive through. Are you really saving time by eating badly? The same principle works for exercise. For example, you need to take your son to soccer practice. Can you spend 10 minutes doing the stairs? Or go for a brisk walk near the facility? Create small opportunities for good health in your day. M.P.

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Is getting three, 15-minute exercise sessions done in a given day as benecial as one 45-minute session?

According to Dr. Jane Shearer and Dr. Nicole CulosReed, two associate professors in the University of Calgarys Faculty of Kinesiology, both approaches to exercise are benecial. If you are training for a long run, ride or swim, youll need to build the duration. But for beginners or those of us exercising for the health benets, the multiple short durations of intense exercise approach is ne. The number one barrier to exercise for all of us is time, Dr. Culos-Reed says, So if its more achievable to get those shorter bouts in throughout the day, theres nothing wrong with that. Dr. Shearer says that over the years, shes become a bigger fan of short sessions. These can be more benecial than one sustained workout, she says, as each session elevates your metabolism. But the 15 minutes of exercise must involve an activity that gets your heart rate up fast, such as a short jog, bike ride, ski or swim. You want to be efcient with your time, get your heart rate up and sustain it for 15 minutes, she says. Dr. Culos-Reed researches physical activity for cancer survivors on and off treatment, and says that some people recovering from cancer treatment may nd a 30- to 45-minute workout daunting. Achieving smaller bouts of exercise may be more realistic, and Culos-Reed says that some studies show that shorter durations of exercise for people receiving cancer treatment are more benecial and achievable than a longer workout. There is no one right exercise for anyone; it comes down to preference. Regardless of how youre structuring your exercise, the benets are many. Both approaches are going to have benets in terms of cardiovascular health, overall health and psychological benets, Dr. Shearer says. C.K.

My fathers radiation oncologist has recommended him for brachytherapy. What is it? What are the side effects?

The term brachytherapy stems from the Greek word brachys, meaning short distance. The practice of brachytherapy dates to the early 1900s when scientists discovered that radioactive material could be inserted into a tumour, causing it to shrink. Brachytherapy is a form of radiation therapy where a radiation source, often called a seed (smaller than a grain of rice) is placed inside or near the tumour or other cancer site. This method is used by itself or in combination with other treatments, depending on the diagnosis, says brachytherapist Wendy Read. Read is a radiation therapist with more than 30 years experience at Edmontons Cross Cancer Institute, 10 of them as a brachytherapist. The two main types of brachytherapy are interstitial and intracavity. In interstitial treatment, brachytherapists assist radiation oncologists to place the radiation seed directly into a target tissue. In intracavity brachytherapy, the team inserts an applicator that houses a radioactive source. Brachytherapy can be a permanent technique where the seed remains in location forever, emitting a small amount of radiation over time, or it can be a temporary procedure using different doses. Depending on the treatment type, brachytherapy can be administered in a matter of minutes or could take several hours. In brachytherapy, the radiation dosage is localized, precise and tailored to the tumour volume, sparing the healthy tissue surrounding the tumour from unnecessary irradiation, Read says. Unlike other treatment procedures, brachytherapy doesnt result in obvious external scarring and can be done on either an out- or in-patient basis. Patients react to treatments differently so the side effects will vary widely per individual and treatment type. Brachytherapy is another treatment tool available to the oncology team. S.C.

Ask our experts questions about general health, cancer prevention and treatment. Please submit them via email to letters@myleapmagazine.ca. Remember, this advice is never a substitute for talking directly to your family doctor.

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why I donate /

STORIES OF GIVING

TOUGH TALK: Tom Jack drove his anger in the right direction after his brother-in-law got sick.

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Soft Hearts
Three Alberta men put some muscle and creativity towards raising funds and awareness for cancer
BY ANNALISE KLINGBEIL

verybodys experience with cancer is different, but many people are motivated to raise cash for the cause of research. Three tough Alberta men prove that fundraising can be more than the colour pink, an electric hair clipper, and cross-country running.

event annually and rename it Tonys Convoy for Hope. Tony said to me, Never give up hope. And he didnt, says Jack, a father of three and grandfather of three. The 2011 convoy raised more than $29,000 with 28 trucks driving the 65-kilometre route, ending at the Lloydminster fair grounds with a barbeque, live auction and bouncy castles. Jack drove the lead truck, which was decked out with 20-foot banners that bore the events name. His wife joined him in the passenger seat, while a son, grandson and an employee from local radio station 106.1 FM The Goat, where Jack is well-known on the PULLING TOGETHER In spring, 2010, trucker Tom Jack and his wife Janice King airwaves as Trucker Tom, also came along for the ride. Jack has logged more than one million drove from their home in Vegreville kilometres in his trucking career and says to Toronto to visit Jacks brother-in- Jack has logged more than one million driving in the convoy is an emotional law, who had cancer. kilometres in his trucking career and journey the most challenging kilometres On the drive home, Jack got mad. he drives. Some people say that truckers Hed lost other family members to says driving in this convoy is his most are tough, says Jack. Yeah, but we the disease and his sister recently emotional journey. have big hearts. had breast cancer. Seeing his sick Jack hopes to have 50 trucks take part in the 2012 convoy, and says the anger he harbrother-in-law, Tony Rossi, was the nal straw. My wife said, Cancer doesnt care if youre mad, says boured has faded. Im not mad anymore and this [fundraiser] is my own outlet so I dont Jack, speaking on his hands-free phone, somewhere near get mad. Hardisty, Alberta. The low rumble of the road is just ROGER THAT audible in the background. Of course, she was right. Jack realized he had to direct his George Hufnagel is a truck driver whos also used wheels to raise funds for cancer. Hufnagel, a father of four and grandfather of ve, was diagnosed with prostate cancer anger to positive action. He decided to host a convoy of trucks that would drive from Vermillion to Lloydminster three years ago, on his 25th wedding anniversary. The former funeral home director and to raise money for the Alberta Cancer Foundation, benet- current part-time long-distance truck driver didnt want to make a big deal of his diagnosis. He thought treating the cancer would be a simple operation. ing the Cross Cancer Institute. It would be basically like an appendix operation, says 53-year-old Hufnagel. Id go to The rst convoy was July 24, 2010, just months after the hospital, everything would be done with and that would be the last Id hear of it. Jacks trip east, and the event raised more than $17,000. When the cancer came back in February of 2011, Hufnagel decided to speak out about Rossi wanted to attend the 2010 event but wasnt feeling well. Instead, he spoke with Jack on the phone, as 35 trucks prostate cancer. I thought maybe the reason I got cancer a second time is because I have to were getting ready to begin the journey. Everybody had do something with this, and make people more aware of prostate cancer. That something Hufnagel decided to do was a 14-day motorcycle ride in September 2011 their air horns blaring for him, says Jack. Rossi died that September, and Jack decided to host the from Lethbridge, where he lives, to California. The trip saw Hufnagel raise awareness and

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STORIES OF GIVING

SECOND TIME AROUND: George Hufnagel decided to speak up and raise funds when his cancer returned. Below, Digger gets shaved.

$1,700 for prostate cancer while clocking 7,944 kilometres on his Harley Davidson Heritage Classic, which he calls La Poderosa. He says the solo trip, during which he passed through Kamloops and Whistler and drove the Sea to Sky Highway, was an amazing experience. Hufnagel worked as a funeral director for more than two decades and says he often heard stories about people who died right after buying a boat, planning a trip or retiring. He left the industry in 2005 to work at a job that oered more exibility so he could enjoy lifes pleasures, which includes riding motorcycles. Lo and behold it wasnt that long after I got out of the funeral business to enjoy life, that I discovered I had cancer, says Hufnagel. When his cancer returned, Hufnagel underwent 33 rounds of radiation and today hes waiting on blood tests to ensure the radiation eradicated the cancer. Three years ago, Hufnagel was ignorant about prostate cancer. He views his cancer diagnosis as a gift that has allowed him to raise awareness about the disease. When I was going through the radiation treatments, I saw everything that was around me, all the equipment, all the sta, the personnel and everything, Hufnagel says. I felt in some way, I wanted to be able to contribute to this. HELP ON WHEELS In ve years, Derek Digger Berg has raised more than $43,000 for the Alberta Cancer Foundation by (specically pediatric cancer research at the Cross Cancer Institute) hosting Diggers annual BBQ for a Cure. The barbeque is a two-day festival held at the Electric Rodeo 18

in Spruce Grove every August. The event includes poker runs, a head shave, a pancake breakfast, auctions, and live music. Berg, a steamtter who earned the nickname Digger as a child, has lost family members to cancer including his father and grandfather. It was his moms diagnosis that prompted him to create the annual barbeque. An eight-year-old boy who shared a hospital room with Diggers father also inspired him. Ten years ago, Berg went through rehab for drug addiction and found out that he suered from low self worth and self esteem. Hes been clean for nine years and says putting on a popular community event helps raise money for an important cause, and helps improve his self esteem. Doing these barbeques...it gives me a great feeling that lasts all year long, says Berg. Bergs mom passed away August 1, 2010, just three weeks before the fourth annual BBQ for a Cure. People said I should cancel and I said, No damn way. This was a thing my mother was truly proud of me for, says Berg, who lives in Stony Plain. That year, Diggers BBQ for a Cure went on as planned, but the event wasnt without hiccups. Ugly, wet weather almost cancelled the motorcycle poker run, an event in which players on bikes visit checkpoints, selecting a playing card at each one. The biker with the best poker hand at the end wins. The event is a favourite, so Berg took matters into his own hands. I looked up at the sky and I said, Ma, the boys are headed south. Pull this stu o to the North. The riders wiped o their seats, hopped on their bikes and away they went. As soon as they started to drive, the rain stopped, says Berg. They had thunderstorms on both sides of them, but on the entire run they never got one drop on them.
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GOLF GIFTS
BY DEBBIE OLSEN

The winner of the annual Cross Cancer Golf Classic draw pays it forward to thousands of Albertans

There was a time when corporate philanthropy

consisted of large companies choosing a good cause and simply cutting a cheque, but times are changing as leaders of corporations are becoming more HES GAME: Lylle Kephart tipped his engaged in the causes they choose to support. An draw prize winnings to the Alberta Cancer Foundation. example of this phenomenon occurred at the 23rd annual Cross Cancer Institute Golf Classic that was held in August 2011 to raise funds for the Alberta Cancer Foundation. When Lylle Kephart, the regional stepped forward to be part of the committee that is planning the golf tournament; director for Alberta North with Acklands-Grainger, his business experience will be a real asset for volunteers who hope to link core was drawn to receive the grand prize of $10,000, he business practices with their fundraising efforts to generate even greater prots for walked up to the podium and without batting an eye the Foundation. The outstanding generosity of both Lylle and Acklands-Grainger is a testament promptly donated the prize right back to the Alberta Cancer Foundation. When the president of Acklands- to what corporate involvement can look like in our community, says Bobbi Wolbeck, Grainger, a founding sponsor of the Golf Classic, manager of special events and community liaison for the Alberta Cancer found out what his team member had done, the com- Foundation. This years tourney netted $930,000, which will help purchase a new PET/CT scanner at the Cross Cancer Institute. pany matched Kepharts Once purchased, the Cross Cancer Institute $10,000 gift with one of In the golf tournament, Ive seen will have the first new PET/CT scanner of this their own. the passion of the volunteers, type in Canada and one of only a handful in Like so many other people around the world, my says Kephart. They take pride in North America. The new equipment will allow life has been touched by their efforts and it has definitely had staff to detect cancers at an even earlier stage than with the equipment thats currently availcancer, says Kephart. Ive an impact on me. able. And it will allow staff to personalize treatbeen involved in the golf ment plans for cancer patients across the provtournament for the past three years and Ive seen the passion and commitment ince. Since 2002, more than 10,000 patients have received scans at the Cross of the volunteers. They take a lot of pride in all of their Cancer Institutes PET Imaging Centre, so theres no doubt this equipment will benfundraising efforts and it has denitely had an impact et thousands of Albertans. The Cross Cancer Institute is one of the premiere cancer centres in North on me. Acklands-Grainger has been sponsoring the Cross America and Acklands-Grainger and I are pleased to be able to support in a small Cancer Institute Golf Classic since its inception and has way the great work thats going on there, says Kephart. Winning the grand prize at the golf tournament was a great surprise, Kephart developed a company culture that includes corporate social responsibility as a core component of its corpo- adds. I guess I do get lucky once in a while. rate strategy. By contributing to the communities in which it does business and encouraging the personal Your organization can raise its prole while turning a golf tournament giving and volunteer activities of its employees, the into a life-changing event. To nd out more about the Cross Cancer company is making a real difference for many nonInstitutes Golf Classic or to become a participant, sponsor or comprofit organizations across Canada including the panion event, visit www.ccigolfclassic.com. Alberta Cancer Foundation. For next year, Kephart has
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BY LISA RICCIOTTI

Grab your leg warmers and some friends and Bust a Move for an a great new event coming to Edmonton this spring

GOOD SPORTS: Kate Watt, a BaM committee member, gets her 80s on. Her mom, Heather, is a two-time cancer graduate and a trustee of the Alberta Cancer Foundation.

hat do you do for an encore after putting on the worlds longest hockey game to raise funds for cancer research? Try the worlds largest (and possibly longest) tness class. On March 24, 2012, the Alberta Cancer Foundation will launch a new fundraiser, the rst of its kind in Western Canada. Imagine hundreds of enthusiastic participants dressed in outrageous costumes jumping and jiving, stretching and sweating, grooving and groaning for six straight hours as they work out together in a giant tness class at Edmontons Northlands Expo Centre. The event is called Bust a Move for Breast Health, or BaM! You have to include that exclamation mark after the acronym, because the enthusiasm is catching. Bust A Move began in Halifax two years ago. But the day-long tness extravaganza is too much fun for just one city, and in March Ottawa, Montreal and Edmonton will host their own BaM! events. Last year two members of the Alberta Cancer Foundation participated in the Halifax BaM! event and immediately knew they had to bring it to Alberta. They loved its spirit, fun and energy, says Brooke Rose, whos organizing Edmontons BaM! inaugural event. Rose and other foundation members wanted to host a new signature event. Rose is an event promotion specialist with the Alberta Cancer Foundation, but shed rather you call her chief Bust-a-Mover until the event is over. Shes already training and fundraising to participate in the event herself, and explains how it works. The six hours are divided into six types of exercise sessions, led by local tness leaders, says Rose. Well have everything from Zumba to yoga to kick-boxing. Our goal is to recruit as many participants as we can who are each challenged to raise $1,000. People can sign up on their own or enter as teams, and we really encourage the team idea. Its more fun to be part of a group eort, where you come up with a crazy team name and costumes, with more support to keep going. Teams can raise funds as a group, letting members who raise more help secure a spot for others who raise less. Take some inspiration from Kate Watt, one of 13 BaM! committee members. Shes volunteering because this cause is near and dear to my heart, she says. Her mother, Heather, was diagnosed with stage III breast cancer when Watt was 19. It hit Watt hard. Heather, had already recovered from uterine cancer when Watt was in Grade 8, but this time she was old enough to feel she needed to do something to help her mother through her second cancer journey. Shed just started university, but she withdrew so she could accompany her mother to medical appointments. Still, she kept wondering what else she could do. Its so easy to say Why my Mom? Why again? says Watt. But that puts you in a negative space. So I switched my mindset to How can I help?
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WORK IT: A promotional mini-event in Edmonton drummed up interest in next springs tness extravaganza.

For Watt, the answer was fundraising. Since she was If you have 100 friends, ask them for $10 each. And when ve friends tell another ve involved in equestrian show-jumping, she came up with friends, before you know it youll hit your goal. Kirtio also has a special story to tell, since shell be participating at BaM! as a breast the idea of an event at a horse show. She met with Alberta cancer graduate. Now 25, she was diagnosed at Cancer Foundation sta and 23. Im so lucky I found the lump early, Kirtio the concept became Bringing BaM! Is a six-hour, fundraising exercise Im passionate about using Home the Dream a brunch extravaganza, everything from Zumba to says. Nowto show others the importancemy experience of for 250 people held at the yoga to kick-boxing to raise funds for examining their breasts regularly. I was active 2005 Edmonton Northlands and healthy, but they discovered I have a genetic Horse Show. Tickets sold for breast health in Alberta. predisposition. Kirtio says the experience was $250 a plate and, with other life-changing. Im more understanding now, and more involved with others. I want to go donations, the event raised $86,000. But Watt didnt stop there. She was so impressed with to law school so I can advocate for people in the health-care system. So, raising $1,000 isnt an impossible goal. But maybe youre still apprehensive about Dr. Michael Sawyer, the oncologist who never gave up on her mother (who is now cancer-free) that she made a making it through six hours of exercise. Dont worry! says Rose. Well have 15-minute pledge to raise $300,000 over three years to support his breaks after each session, and participants can take a breather whenever they like. Well research. She raised $340,000, an amount that Dr. Sawyer have lots of energizing, healthy food and massage stations set up. And everyone will have credits with making a huge dierence in his research to the option of doing the exercises at high, low or medium impact levels. Both Kirtio and Watt participated in the BaM! kick-o media event, held on a sunny nd alternative treatments to chemotherapy. If you put your mind to it and never give up my but chilly October day in Edmontons Churchill Square. Along with about 100 others, mother and Dr. Sawyer never did you can accomplish they hip-hopped, boogied, rumbaed and improvised their way through a 20-minute great things, says Watt. Dont be scared about Zumba session. Neither had tried the Latin-inspired dance-tness craze before. I was terrible at it! laughs Watt. But we laughed, had fun and shared time together. raising $1,000. You can do it; youll surpass it. Youll be And thats the whole point of BaM! Together we can have fun and make a dierence. surprised. Leah Kirtio is another committee member who shares Watts philosophy. FIND OUT MORE Look for details or register online at It sounds like a lot, but its not. You just need to reach bustamove-edmonton.ca or facebook.com/BaMEdmonton. out to your network, and social media makes it so easy.
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Sharing: FACE CANCER WITH STORIES

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BY KATHERINE FAWCETT / ILLUSTRATIONS BY PETE RYAN

Stories are the way we deal with our experiences, great and small. Its no surprise they help us cope with cancer

have cancer. I had cancer. I lost the love of my life to cancer. These short sentences could each be the once upon a time opener of countless unforgettable stories; stories with narratives as dierent as there are individual storytellers and as compelling as each life lived. While the plots, settings, characters and endings are unique, the impulse to share our stories is rooted in the same basic urge. When our stories arise from real-life experiences they help us process that which might otherwise confuse or frighten us. Stories can help us circumscribe life-changing events like cancer. They help us make sense of the world, build empathy, tie us together and commemorate that which has been lost. They may appear in the form of a journal, poetry, lm, cartoon, blog, song, novel or theatre. Stories about cancer whether told by someone who has lived through it, provided care to a cancer patient or lost a loved one to the disease can be inspiring, sad, thought-provoking and funny, sometimes within the same paragraph. Candace Weimer knows power the of story-telling rst-hand. She had the rug yanked from under her when she was 38 years old. A single mother, tness instructor and communications expert, Weimer had always been a vibrant, high-energy woman. She was the one her family turned to when they needed a boost. She was always the optimist, the motivator. Weimer knew something was wrong when she noticed her strong legs getting scrawny, bags under her eyes, a bloated belly and sallow skin. She also began having such intense fatigue she could barely keep her eyes

open through the afternoon. Weimer was diagnosed with myelobrosis, a bone and blood cancer related to leukemia. Doctors told her she could expect to live another two years. Her son was 14 years old. Of fear, denial and uncertainty, it was the uncertainty that dominated Weimers emotions at that time. In her search for literature about the illness, she found plenty of medical information and books about theories behind cancer, but not much that was personal; nothing she could really relate to. I wanted something inspirational. Something that would let me know it was going to be OK, whatever happened. Something that wasnt heavy. I needed to know what to expect. When she couldnt nd anything to identify with, give her some hope and lift her spirits in an honest, perhaps even humourous way, Weimer started writing. Journaling. Doodling. Recording. She let the tears fall as words, turned her pain into jokes and released the stories from the constraints of her confused mind, battered body and shining heart. At rst, journaling was a way of keeping all the information straight, says Weimer. It soon became a place for her to vent her emotions. I was a single mom. I couldnt unload on my son, but there were things I needed to get out. Weimer endured a bone marrow transplant (courtesy of her brother Denniss donation), seemingly endless complications including infection, two knee operations, a hip replacement, internal surgery and two eye surgeries. The cards were stacked against her. There were weeks

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Theme: STORIES

when she was too sick to write. There were days when it was a real pain in the butt. And there were days when writing was the only thing she felt able to do. Weimers 117-page book When The World Dropped In On Me: A personal and unusual guide to help cancer patients and their caregivers survive cancer (candaceweimer.ca, 2011, $15.95) is based on entries in her journal and features photos, hand-drawn cartoons, personal reactions and reections. It takes the reader through diagnosis, treatment, set-backs and celebratory milestones. There is an acknowledgment of pain and fear, with humour and levity to make it uplifting. Weimer jokes about looking like a hairless cat, realizing who her real friends are, having to eat healthy food and how her social life has been seriously hampered since being struck with cancer. If you can nd something to laugh about, it takes you out of the pain, says Weimer. Out of the fear. It takes you out of the real, not-so-pleasant adventure for a little while. Dr. Shawn Steggles agrees that reading, hearing, telling stories and even laughing about cancer experiences can be emotionally healing. Dr. Steggles is director of psychosocial oncology and spiritual resources at the Cross Cancer Institute in Edmonton. He is also a clinical professor in the deptartment of oncology at the University of Alberta. There is a small percentage of people who just do not want to tell their story. They want to be private. There has to be respect for that, Steggles says. But in my experience, the vast majority of people want to be able to tell the story. Its in our nature. He says sharing, whether oral, written, dramatic or artistic, is a major coping strategy to get through hard times. When people share their stories, they feel better, at least temporarily. Dr. Steggless interest in the psychosocial impact of cancer has a personal connection: he underwent cancer treatment himself in 1983. At the time, there was little in the way of psychosocial support for cancer patients and their families, and he was motivated to do what he could to change that. Since then, he has developed psychosocial oncology programs in Ontario, Ireland and took the lead on an existing program in Edmonton. Ive seen a great change in the 28 years Ive been involved. Theres certainly more acceptance of sharing. People are less stigmatized. Theres more willingness to talk about it. People used to just refer to cancer as The Big C in hushed tones. Dr. Steggles says one reason for the change in attitude and the willingness to open up is that people are simply living longer with cancer and after cancer. Forty years ago, there just werent long-term survivors. With the advent of chemotherapy in the 70s and 80s, we now have stories of people living with cancer. Many forms of cancer are now talked about as being a chronic illness. Thats a remarkable change. People are around to say, Im dealing with my cancer experience. 24

When Darren Neuberger was diagnosed with acute lymphocytic leukemia, he thought he was a goner. You hear the words You have cancer, and you automatically think youre dead. I was like, Im 34 and this is it. He felt alone, confused and afraid. It scared the crap out of me. Eight years later and this energetic writer, story-teller, cancer-awareness promoter, empowerment coach, mentor and Internet radio-show host is anything but gone. He has been in remission since 2003 and shares his message of inspiration, survival and optimism in every way he can. During cancer treatment, Neuberger (now an events specialist with the Alberta Cancer Foundation) was given Lance Armstrongs book Its Not About the Bike. He found inspiration in the story of someone else close to his age who went through cancer and came out the other side. I thought how great it would be to make a book to give others inspiration and hope. Neuberger solicited rst-person stories of cancer experiences. I received 150 emails in the rst month, he says. The resulting 210-page compilation is Lets Talk! About It: Inspiring stories from young adult cancer survivors (Authority Publishing, 2010, $24.95), an anthology of 40 stories by people who were diagnosed with cancer between the ages of 15 and 45. He says that writing his own personal story for the collection was the best therapy ever. He re-wrote his piece at least 65 times. Each re-write was painful but necessary, healing and, eventually, uplifting. It became obvious to Neuberger that there was a deep need for people to feel they arent alone in their cancer journey. People dont share their stories enough. You had chemo, radiation. Youve walked the cancer-care gauntlet. I want people to hear good news stories.
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Today he hosts an Internet radio show on Blogtalk Radio called Lets Talk About It Radio Show with Darren Neuberger. The program airs live every Tuesday evening at 6:30 p.m. Mountain Time. The radio show is just another forum for people to tell their stories. After going through cancer, I want to leave a footprint in this world in some capacity. My biggest message is: You have to be the CEO of your own life. Your body is always talking to you. Listen to it. Of course, stories about cancer can be very dicult to hear and to tell. Lethbridge writer, teacher and musician Allan Wilsons teenaged son Joshua was diagnosed with cancer in spring, 1998. After surgery, chemotherapy and a recurrance, he died in January, 2000. Writing gave Wilson a way to express his anguish, to record the lessons he learned through grief, and to share Joshuas courage and wisdom. I started to keep a journal, said Wilson. When he was rst diagnosed, it hits you like a hammer. I pretty much had to write. Just to organize my thinking, help me face the feelings. I found that in the morning, when Josh was sleeping, I would write about what happened the previous day. It gave me something to do, something to focus on when he was sleeping, which was a lot. When he was awake, we wanted to spend as much time as possible with him. Wilson communicated with concerned family and friends through his writing. (These were pre-blogging times.) I found it easier to send out weekly instalments of my journal, through the mail. Then I didnt have to spend time on the phone with people, well-wishers, who wanted to know how he was doing. In doing so, Wilson began to realize the journals signicance. Living with someone who is dying is very dicult, as you can imagine. This became a really important document, he says. Im so happy its there. It has facts, conversations, details, dialogue. Wilson called the 110,000-word journal Walking Upright Through Fire. He is still in the process of nding a publisher for the entire manuscript, but he has shared dierent forms of it. An essay inspired by the journal called The Continent of Cancer was published in the United Church Observer and The Canadian Medical Association Journal. An edited version called Joshuas Gifts appeared in Readers Digest. He wrote a 120-page book for teens entitled Standards of Excellence: For students of life, (Blue Grama Publications, 2005), a motivational/ inspirational book for teenagers, using the lessons of Joshuas short life as a guide. Last year, Wilson adapted the journal into a play for stage that has been performed across Canada. He says it has been incredibly moving to see an actor portray his son, reading the words that Joshua once spoke. In a way, Wilson says he felt his sons spirit was present in the theatre for each performance. By telling the story of Joshs strength through the ordeal of cancer, Wilson hopes to inspire others to not take life for granted. To treat their bodies with respect. To
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treat each other with love. In his essay One Day I Will Lie Down Beside You, published in an anthology called Nobodys Father (TouchWood Editions, 2009) Wilson describes, in painful detail, his sons third-last breath. And his second-last breath. And his last breath. And about what happened after that. How he and his wife mourned together and individually and how they are now able to nd some peace, some joy, and some moments of pleasure, while still holding their sons memory close. The essay closes with powerful words from father to son: Just as you bravely lived 22 months with a deadly disease, I will try to turn this into a meaningful experience. And, one day, I will lie down beside you.

REAL DRAMA
Walking Upright Through Fire is a two-act play based on the true story of the last six months of Joshua Wilsons life. Joshua was diagnosed with ostegenic sarcoma when he was 15 years old. The play beautifully balances sorrow and joy, tears and laughter and portrays a family dealing with chemotherapy, the amputation, hope, setbacks, pain, and ultimately death. Infused with hope, love, and humour, the plays central message comes from Joshua: Do not be afraid of dyingbe afraid of not living well. The script for Walking Upright Through Fire is composed mostly of dialogue that was actually spoken and recorded in a journal by Joshuas father, writer and teacher Allan Wilson. The play received tremendous critical acclaim and raised over $5,000 for the Kids Cancer Care Foundation of Calgary when it was performed by Taber Players in Lethbridge in February 2010.

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Sharing Sharing: FACE CANCER WITH STORIES

ord is slowly ltering out over the grapevine that I had a tumour removed from my colon, and am now undergoing chemotherapy to eradicate any lingering cancer in my lymph nodes. Every so often I receive an email from someone whos just heard and wants to oer warm thoughts, prayers, baked goods and so on. Certainly its gratifying to feel loved, but it felt a bit awkward, perhaps because I dont share the perception that my cancer is was any big deal. Sure, its a potentially life-threatening illness, but Ive been a science geek since my dinosaur phase in kindergarten. Ive been reading about biology, genetics and medicine for years, and so the word cancer has no special mystique. I dont think about evil spirits or certain death or tired metaphors of heroic battles when I see the word, and I remember laughing out loud when I saw a newspaper horoscope that changed the name of Cancer the Crab to Moon Children, presumably to insulate those born under that sign from the bad juju of the C-word. Ive always seen the disease as just a particular set of mechanisms under which biological processes go awry, not at all surprising given the evolutionary history of our cells. Plus, I already knew that colon cancer in particular is highly treatable, so learning I had it didnt inspire strong feelings of dread. I believe the surgery took out all the cancer I had, but Im going ahead with the chemo just to be safe. Or safer theres no such thing as perfectly safe, with cancer or anything else. So really, the only reaction I had to learning I had colon cancer was, Ah, so that explains the constipation and fatigue, and Well then, what shall we do about it? There was no shock, no existential horror at suddenly being confronted with my own mortality. I was annoyed that the surgery would mean Id miss my cousins wedding in California, and surgery and chemo arent pleasant,

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BY TOM CANTINE / PHOTO BY BUFFY GOODMAN

I avoided talking about my cancer, not because it scared me, but because it just wasnt an existential crisis. But maybe its not about me
but the cancer itself? It was a simple fact and a practical problem to be addressed, not an omen of doom. Even if my prognosis hadnt been good, I didnt need any diagnosis to tell me Im going to die. Of course Im going to die, as is everyone else, although not knowing when or how allows us to pretend we wont. Well, I still dont know when or how, so the diagnosis changes nothing. This cancer probably wont get me, but another might, or I could be hit by a bus, or eaten by a bear. Sooner or later, Ill meet some kind of end. This is why Ive felt awkward about people praying for me and thinking positive thoughts and so on: its almost a statistical certainty Ill outlive some of those people. The attention paid to worrying about me would be much better spent concentrating on things like looking both ways before you cross the street. Or getting a colonoscopy, for that matter; if Id done so earlier, I might have avoided some inconvenience and discomfort. But I knew people would react this way. I didnt want anyone to suer an emotional upset for something that, to me, really isnt a big deal. Thats why I tried to keep quiet about the diagnosis and treatment, hoping I could simply let people know once everything was a fait accompli, simply another little bit of Tom-related trivia to le away. That worked pretty much, until after the surgery, anyway. I told a few people I was in the hospital, mostly on a needto-know basis. But word gets out and treatment slows you down. The upside? As a science geek, I was fascinated by all of the technology involved in the procedure, and while recovering from surgery involves considerable discomfort, I at least had no shortage of interesting and new experiences to keep my mind busy. Laparoscopic surgery is cool! Did you know they inate your abdominal cavity with CO2 so they have room to work? Id never actually been under general anaesthetic before. I had all of these experiences and observations to share with my friends once I was discharged. So the word was out, and the grapevine got to work and the messages of concern and positive thoughts started to trickle in. But Im not alarmed or upset or frightened. Why the fuss? Im beginning to understand that it isnt really about me. Part of the story of my cancer is how my friends and family experience it. Yes, its great they care about me, but its also about their fears. One friend said she just wasnt prepared for a world without Tom in it. And my father rightly pointed out that however unafraid I might be for myself, Id feel dierently if it were my son and not me. Or my father and not me, for that matter. So I see that its important to some of my friends and relatives to comfort themselves with prayers and positive thinking, and more: that I know they are praying and thinking positive thoughts to my benet. And knowing that they have this need, its no longer a burden to let them say so.

WHO NEEDS TO KNOW

I avoided telling most of my friends about my cancer until after the surgery, but my siblings were denitely in the need-toknow category. Several years ago, a dear friend of the family died of cancer. Her brother had had the same kind of cancer earlier, but had never told anyone about it, and thus deprived her of the opportunity to consult with her doctor about possible screening. So just about the rst thing I did after my diagnosis was call up my sisters to update them: The next time your doctor asks you if you have a family history of bowel cancer, you say YES.

For more information on colon cancer screening, visit screeningforlife.ca and talk to your doctor. You may opt for earlier screening by colonoscopy if you have a parent, child or sibling who has had colon cancer or colon polyps.

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Given the alternative, its great to have the problems that come with survivorship. But once treatment is over, patients can be adrift

BY MIFI PURVIS

t one time, Andrew Leitch celebrated the yearly passing of his cancer with a cake, and often with a visit to the Cross Cancer Institutes waiting room where he once spent so much time. I would sit there, he says, and all the stu the daily mess would just stop and become unimportant. During his treatment, the usual regimen for lymphoma had had little eect. My tumours grew back, putting me in a whole new category. Doctors said theyd extract and freeze stem cells from Leitchs marrow before putting him on a tough new chemo regimen that would knock out his immune system and the cancer with it. Then theyd replace the marrow with his frozen cells, which would hopefully start making healthy blood cells. It was his one chance the hail-Mary pass, as he calls it. (In football, when the quarterback is about to get creamed, he might just send the ball ying, with a hail Mary, in hopes someone will catch it.) His treatment ended on January 22, 1997, with a bone marrow transplant. It was apparent right away that the transplant was working, he says. Yes, he says, it was dramatic, if you go in for drama. Today, Leitch is a communications professional at the University of Alberta and a father to two kids, seven and 11 years old. On the rst anniversary of transplant, his wife gave him a re-birthday card. And for a good ve years, Leitch would make his pilgrimage to that waiting room to reect on the turn that put him from sickness to health. But in the last ve years, its been 50/50 that my wife or I will remember it, he says. Once the kids came along, I guess it took away some of that mental focus. How cancer survivorship is dened is a matter of interpretation, says
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from cancer. Shed accomplished many of her career goals and worked to counsel people with leukemia and lymphoma. At the party, I stood up and thanked my brother, my family and my doctors, and I said that we should all just celebrate every day, not wait for the big moments. Three weeks later she felt tired and her mother said her lips looked pale. The cancer had returned. Another transplant, from an unrelated donor this time, was followed by some complications and rejection episodes. By 2004, she was stable and had returned to work full-time and resumed peer counselling. Her company oered her the chance to work on an international project based in Manhattan. She loved New York and jumped at it. Memorial Sloan-Kettering Cancer Center agreed to monitor Antonini. For a year I lived the New York life, she says. Then, I was getting ready for a trip to the Hamptons how New York is that? and I got a fever. Cancer again. Doctors at Sloan-Kettering said there was nothing Janine Giese-Davis, PhD, associate professor in the division of psychosocial oncology at the University of Calgary. Giese-Davis heads a multidisciplinary team (including that they could do that the Tom Baker Cancer Centre researchers, physicians, oncologists, survivors and more) called CancerBRIDGES that couldnt and advised her to return to Calgary and her researches and delivers evidence-based survivorship care. She considers survivorship family. Doctors there gave her the choice of palliative to mean the period between diagnosis and death, however long or short that may be. care or another round of chemo to knock the cancer Others say survivorship starts at the end of active treatment, which can be a dicult back. I said, Get that central line in, she says. She had many complications, including near death time for former patients, who often feel guilt for surviving where others didnt and, from esh-eating disease. She had to learn to walk ironically, for not savouring their survival. People say they ought to be happy, but often feel abandoned and frightened, even swallow again. Against all odds, she recovered. Giese-Davis says. Many patients have developed close relationships with their medical In 2007 she went back to New York to visit friends and caregivers. Once treatment is nished, those relationships dry up. It can be especially dropped into Sloan-Kettering to see her (astonished) hard on rural patients with little to no local resources, Giese-Davis says. Her group is doctors. They were starting a trial for a new chemo-plusat work on a number of initiatives to address the dearth of post-cancer care, such as transplant protocol and she found out she qualied. In 2008, Health Canada agreed to training local peer support partners allow Dr. Chris Brown at the Tom and improving online and in-person Three weeks after a 2002 Toast to Life the Sloanaccess to care. party that marked her five-year passage from Baker to administer underwent Kettering trial. She With better treatment, some people cancer, Tricia Antoninis disease returned. the new chemo and transplant are experiencing cancer as chronic Ive learned to live with uncertainty. with her brother as donor again, or episodic. Treatments can have becoming one of few people in side eects, including other cancers, diseases or disabilities. In addition to emotional issues, survivorship challenges North America to have received a third transplant. Today, Antoninis back at work, working for PwC include returning to work, nancial, social and lifestyle issues, as well as changes in physical abilities. Giese-Daviss group addresses the lack of research documenting Calgarys not-for-prot assurance practice and overseeing PwC Foundation activities in the Calgary oce. I cancer survivors needs, post acute treatment. have had an incredibly full life, she says, much of it in Tricia Antonini knows all about cancer survivorship challenges. In June 1997, she was 23 and golng near Red Deer with PwC Calgary, the company the category of either cancer patient or in survivorship. shed joined as a chartered accountant articling student. It was a long day and she I have learned to live with uncertainty, and thats OK. lugged her clubs around 18 holes. At the end of the game, she passed out. She woke up In December, shes going to Los Angeles with friends to in the Red Deer hospital, where they told her her haemoglobin had tanked and she had see the nale of the hit reality show Survivor. Its about balancing the energy you spend on ghting leukemia. A bone marrow biopsy conrmed it and, days later, she was getting her rst dose of chemo through a central line into her heart. Eventually, she had a bone marrow to live with the energy you spend on living, she says. transplant from her brothers donated cells. For a while it looked like that might be the Sure, celebrate those cancerversaries, but Ive been zapped by the ve-year rule. I celebrate every day. end of Antoninis cancer story. Like Antonini, Leitch is now more apt to celebrate Really, its the start of a survivorship story that unfolds over many chapters. In 2002, Antonini held a Toast to Life party that marked her ve-year passage the smaller, more average moments in life. You know, I nd I dont enjoy telling this story as much as I once did, he says, reecting on his survivorship. The Dr. Janine Giese-Daviss group is developing new programs for survivors milestones may have lost some magic. But he says, including a survivor network to link people with local resources. There are dozens of times in a month that I think that See cancerbridges.ca I am glad to be here.
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Whether youre well or coping with illness, it may help your health to spend a little time thinking about the end

BY ROBIN SCHROFFEL
Theres new evidence that talking about death and introducing palliative care earlier on in a patients cancer care can improve quality of life and even extend life. A study published last year in The New England Journal of Medicine showed that in a group of patients with newly diagnosed metastatic non-small-cell lung cancer, those who received palliative care early on survived longer than those who received standard oncologic care. Findings like these are encouraging to Bert Enns, past director of the palliative care and end-of-life program with the Calgary zone. Shes currently a spiritual care specialist with the Tom Baker Cancer Centre with an interest in palliative care. As clinicians, one of our struggles is the sense that we might destroy somebodys hope if we introduce questions around mortality early on, Enns says. Some of the research would indicate otherwise. Introducing palliative care early may help patients deal with death, but its never easy, says Dr. Cheryl Nekolaichuk, a counselling psychologist on the tertiary palliative care unit at Edmontons Grey Nuns Community Hospital. For many, it means that items on that bucket list of things to do before you die wont be checked o. For others, its accepting that they wont be there for their loved ones. Some people take it in stride, while others never come to terms with it. Sometimes youll hear people say, This is the best thing that ever happened to me. It gave me an opportunity to spend more time with family or to really set my priorities straight, Nekolaichuk says. But I vividly recall one patient who said, I know a lot of people say that, but this is not the best thing thats happened to me and I cant ever think that it could be. For every person, it will be dierent. Watanabe agrees. The awareness that your time is limited sharpens your focus on those things that are truly important. But we cant make a person accept that theyre dying. In cases like this, she says, the best caregivers can do is accept the realities and

r. Shane Sinclair calls death a proverbial white elephant. Its something we all think about and something we all face eventually. Sinclair, the spiritual care co-ordinator at the Tom Baker Cancer Centre in Calgary (and CIHR Postdoctoral Fellow in the Manitoba Palliative Care Research Unit, University of Manitoba), nds that we have a cultural tendency to avoid talking about the end of life. In a world where between half and one-third of people will be diagnosed with cancer and half of those will die from their illness, death is very much a part of reality. And when a cancer diagnosis shifts from curable to terminal, the topic of mortality becomes unavoidable for the patient, his other loved ones and health-care providers. Traditionally, its at this point when palliative care becomes a key part of a patients regimen. Palliative care is a group eort involving an interdisciplinary team that includes family doctors, pharmacists, psychologists, social workers, nurses, dieticians, specialist physicians, speech pathologists, occupational, art and physical therapists and spiritual care professionals. By caring for all aspects of the person, quality of life is maximized. In many respects, palliative care focuses less on preparing for death and more on living until you die, says Dr. Sharon Watanabe, director of the department of symptom control and palliative care at the Cross Cancer Institute in Edmonton.

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do the best they can to support the patient through palliative care. In her practice at the Grey Nuns, Nekolaichuk helps patients by joining them in whatever emotional space they happen to be in, whether thats a place of depression, fear or uncertainty, or a place of peace and acceptance. Ultimately, what we bring is ourselves and a sense of hope. Maybe not for a cure, maybe not for the dreams a person may have had, but a way of looking at things that can help people nd meaning and purpose in small things, she says. We try to help patients live with and maintain dignity, and help patients reconnect with important things in their lives in a hopeful way. These days, advances in pain management mean most symptoms can be adequately addressed, enabling patients to focus their energies on those things that mean most to them. Often, this means spending time with family and friends, creating legacy pieces such as letters or keepsakes to leave to loved ones, or asking the big questions that inevitably come up when facing the end of life: What has my life been about? What impact have I made? What are the relationships that have been important to me? What lasting contribution am I going leave? Facing incurable cancer is cause for this type of reection, and often forces people to reconsider whats important to them, Sinclair says. For some people, maybe nothing changes. They feel that theyve lived the life that they want to and theyve lived out of their place of meaning and purpose. For other people, its an opportunity to change some things. According to Sinclair, embracing that opportunity is one of the key factors in a good death. He explored the concept as part of his study on the impact of death and dying on the lives and practices of palliative care professionals, published by the Canadian Medical Association Journal in February 2011. A good death doesnt always mean the clich scenario, with the patient at home, asleep and surrounded by family. Sinclairs study turned up some important components to a good death that stem from beyond those nal few hours: awareness of the situation, maintaining ones sense of meaning, self congruence (I am still me, despite my disease), being an active participant in ones death, and being at peace with loved ones. Its stu we can all work on prospectively rather than waiting for circumstances and time to dictate when we have to deal with it, he says. Sinclairs work has shown him the powerful modifying eect death and dying has, not only in the lives of patients, but also in those of their families and healthcare providers. For some people, facing mortality informs the way theyll live their life, Sinclair says. Thats the mystery in all of this. Although death is a morbid topic initially, in talking about it, it provides more clarity to how people want to live their lives, whether that is for six months or 60 years.
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TODAY IS A GOOD DAY

Cancer is not the only cause of death. Its possible to get too wrapped up in the fact that our time on earth is limited, but it doesnt hurt to give our human condition a little consideration. The steroetypical bucket lists involve sports cars, mountain climbing and European cities, but these luxurious fantasies usually fall away when patients are facing a grave illness. How would you prepare for death? 1. Write a personal directive. These legal documents allow you to name a decision-maker or leave instructions to be followed in the event youre no longer able to make decisions on your medical care for yourself. To get your affairs in order sooner rather than later is a good idea, Dr. Sharon Watanabe says. Use it as an opportunity to have some discussion about your wishes. 2. Find a family doctor. The family doctor has a key role in end-of-life care. The longer relationship you have with your family doctor, the better. Sometimes its easier said than done to nd one, but thats also something that can be done proactively, Watanabe says. 3. Dont wait. We often encounter patients who were diagnosed and theyve just retired and were looking forward to doing all sorts of things, Watanabe says. If there are things you really want to do in life, dont put them off. You never know whats going to happen. 4. Talk about it. Hold kitchen-table conversations around values, Bert Enns says. Family members will nd out a lot about each other and their wishes. 5. Reect. Im not suggesting that we xate our thoughts on death, but that we reect on it in a personal way, whether its going to a funeral and thinking, What would I want people to say if this was my funeral? What would be the things I would want to leave behind? Dr. Shane Sinclair says. 6. Recognize this could be the last time. When I go in and see someone, I always think that this could be the last time I see this person. Its something I take home with me. I try to end conversations in a way that I feel OK about in the event that I dont get to say goodbye formally to that person. It can be as simple as eye contact or giving a hug, Dr. Cheryl Nekolaichuk says. 32

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Remember
BY CAILYNN KLINGBEIL

A Way to

A young mans life is honoured with an annual soccer tourney and the gathering of friends and family

nthony Troncoso loved soccer. He started playing the sport as a child and, years later, coached his sister Valentinas youth team. Anthony is of Chilean descent and he shared a love of soccer with many Chilean friends and family. When he was diagnosed with cancer at the age of 21, the game continued to play prominently in his life. He talked about Manchester United with a volunteer at Edmontons Cross Cancer Institute. He received a day pass to see his sister Vanesas rst indoor soccer game of the season, and played the game with his young son, Domenik. Anthony spent his last days in a hospital room at the Cross that looked on a small sports eld where people played soccer. And so it was tting for Anthonys friends and family to gather on a soccer eld this August, 10 months after he died, to honour Anthonys 25 years of life through the sport he loved so much. The rst annual Anthony David Troncoso soccer tournament raised over $6,000 for the

Friends organized the event, which included food, a raffle, a tournament and a field where kids could play soccer.
Alberta Cancer Foundation, benetting patient care at the Cross Cancer Institute. It was amazing, says Darlene Rojas, Anthonys mother, of the tournament. Anthonys close family friend Hernan Salas organized the tournament with three friends, Salvi Gonzalez, Warren Silva and Yuri Munoz. There was a beautiful, loving spirit throughout the whole thing, Rojas says. It was heart-warming: the number of people who came out and gave, and to know that the money is going to do some good for someone else who is suering.

FATHER AND SON: Anthony Troncoso with Domenik, who is now four years old.

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more surgeries and a lot of discomfort, Anthony insisted his family take a vacation to B.C., so that he could be the best man in his uncles wedding. Shortly after the Thanksgiving trip, Anthony had trouble lifting himself up and he was soon admitted to the Cross Cancer Institute. Theyre a dierent set of people at the Cross, Rojas says. He just loved that place. He made friends and they all knew him. It was perfect. Its ve stars, he would say all the time. Anthonys resident doctor Steve Follett had to tell Anthony, in the presence of his parents, that Anthony would not be able to return home. But his sister had her rst indoor soccer game of the season the following week Anthony was adamant he would watch. He got a day pass and did just that. In the following days, he also received visits from players and coaches from the Edmonton Eskimos and Oilers. Members of the Eskimos visited Anthony before game day, and then returned unexpectedly the next day, bringing him a signed game football. On Friday, October 29, 2010, Anthony died. Rojas is recalling Anthonys story near the end of October, nearly a year since his death. I cant say its easier, she says, looking at the picture shes brought Anthonys journey with cancer started when he was 21. He was just a regular guy, of Anthony. In the photograph taken two summers always healthy, played soccer and loved sports, Rojas says. He had a great job as a lead ago, Anthony is smiling with Domenik. That smile is Anthony through and hand, had met the girl of his dreams and was planning a wedding. They just bought a condo and then on His sister had her first indoor soccer through, says Rojas; during his sickness, he Christmas Eve, found out they were expecting. game the following week Anthony stayed upbeat. Life was falling into place. Meanwhile, a minor Domenik is now workplace accident was causing Anthony some was adamant he would watch. four years old. He is discomfort, but no one thought much of it and Rojas He got a day pass and did just that. Anthony in a nutshell. gured she was worrying needlessly, as any mother Hes fun-loving and might. Anthony had been carrying a pipe that slipped and he caught some of the weight with his left thigh. When he was still hobbling beautiful and respectful and loves soccer, Rojas says. Anthonys sisters, Vanesa and Valentina, are now around nearly a month later, he nally went to see a doctor. The doctor wanted a closer look and booked Anthony an MRI. Anthony eventually coaching Domeniks indoor U6 soccer team. Rojas isnt certain how shell mark the rst found out the slipping pipe was just coincidental he had sarcoma at the site. They told us straight out, You have a tumour attached to the bone, it will require surgery, anniversary of Anthonys death. Domenik has a soccer Rojas says. By March, a biopsy showed the tumour was cancerous and chemotherapy game that morning and then the family will likely go visit began. In early August, Anthony successfully underwent major surgery, which placed Anthonys gravesite. Domenik will let out a balloon if he wants, then maybe friends and family will come over a donor bone in his thigh, and later that month, his son Domenik was born. After ve more months of more chemotherapy, then 10 months of clear followup for a potluck. Well just be together, she says. Its that togetherness that helps them grieve, and appointments, tests found cancerous spots on Anthonys lungs, pelvis and left knee. Doctors conrmed, says Rojas, that the disease had spread and that he had 12 to 18 togetherness is something that Hernan Salas hopes to foster at the end of every July, with the Anthony David months, maybe two years, left to live. But Anthony, 23, continued to be his optimistic, smiling self. He was very strong of Troncoso soccer tournament. Salas says the Chilean mind and didnt allow us to dwell on negatives, Rojas says. His biggest fear was leaving community in the city is very close and Anthonys death aected many. I just wanted to honour him and our his son too soon. Anthony dreamed of walking his son into the rst day of school. Under the stresses of treatment, Anthonys relationship with his sons mother time growing up, Salas says of starting the tournament. ended. Anthony still saw Domenik every weekend and he would plan his chemo early And its something for his son to remember him by. In the coming years, the tournament will be held in the week, in order to have energy for his sons weekend stays. When Anthony had a seizure months later, doctors found a tumour on the left near Anthonys birthday, at the end of July. Instead of side of his brain. A second seziure resulted in paralysis on Anthonys right side. They everyone being upset and crying on his birthday, we removed the tumour to give Anthony a better quality of life. To see him walking can celebrate his life, Salas says. He loved soccer, so what better way to celebrate him than to have a little towards me down the hall with a walker after surgery was beautiful, Rojas says. But his health continued to deteriorate and one of his lungs collapsed. Despite three tournament with the sport he loved the most. 34

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COLD
Dont shutter yourself in this winter. Its time to get active and start living in all four seasons
BY JENNIFER COCKRALL-KING
hen winter comes around, people fall into a trap they can go into hibernation mode, says Christian Gannon, owner of Body Architects personal tness and a certied personal trainer in Edmonton. Its a natural instinct. Gannon works with a wide variety of clients of varying tness levels. He hears all sorts of rationales about why people procrastinate with getting their sweat on. Holidays are no excuse, he says, citing the punctuation of seasonal and personal holiday time, as the biggest culprit for sabotaging a winter workout regime. And then many people think theyll tie-in a new program with the new year, but 95 per cent of new years resolutions fail. But heading to the gym may not inspire you. Maybe its time to think outside the box. With many fun outdoor winter activities right at your doorstep in Alberta. Its just a matter of choosing which ones you want to include in your winter routine. Most communities have active and welcoming outdoor clubs, or specic winter-sporting clubs for cross-country skiing, snowshoeing, walking or downhill skiing, oering low-cost memberships and regularly scheduled group outings as well as aprs-ski-skate-snowshoe socials. Diane Duckett, a director of the Calgary Ski Club, says the club has been actively organizing winter activities since 1935 for a minimal membership fee. There are several winter activities listed on its website from snowshoeing to cross-country skiing to downhill skiing available right in the city.
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Get Chill with the Cold

Like Gannon, Duckett wishes more people would ditch the excuses, bundle up and get out the door. And dont keep your enthusiasm to yourself! Working out with a group motivates you to stick with a tness program. Encourage your family, co-workers or friends to join in. Theyll be glad you did. WALK THE WALK Walking is an ideal winter tness option. Generally, you dont need any special equipment, its free, theres no learning curve to endure, and you can do it anywhere and anytime. Its an excellent low-impact activity for all tness levels. Consider wearing hiking boots, both for warmth and better traction on snow and icy patches. If worries about slipping and falling are keeping you indoors in the winter, try Nordic walking. Sometimes called ski walking, Nordic walking simply involves a pair of hip-to-waist-high ski poles. The poles not only give you much better stability for striding on snow or even ice, but they engage your arms and torso, oering a greater overall workout than regular walking. Nordic walking is also good for taking pressure o of problem knees, hips, and ankle joints. Get o the packed trails in a pair of snowshoes; Duckett says its very popular at the moment. No longer the clumsy, teardrop-shaped baskets of yore, snowshoes are ultra-light, streamlined metals and nylon webbing, making this one of the easiest winter outdoor activities to learn. Go at your own pace, from an easy-going outing to an intense cardio workout. (Snowshoe running is a niche sport for winter enthusiasts. Try the Blitz 5K Fun Run at Mount Norquay at the end of February each year.) Snowshoeing is best in wideopen spaces on fresh, unpacked snow. The City of Edmonton and Calgary both list public parks and areas for snowshoeing on their websites. Skating is a classic outdoor activity, ideal for families or groups of friends. Most city skating venues have indoor change rooms, bathrooms and rinks that are lit for evening skating parties. With a little music wafting from the outdoor speakers, you wont even know you are exercising. For those who want to feel the burn, head to an outdoor speed-skating oval for a faster-paced glide along the ice. Shinny hockey, also known as pick-up hockey, is informal, non-competitive, no-contact hockey for players of all ages. Both Edmonton and Calgary city websites list shinny hockey schedules, locations and rules. With huge improvements in equipment and ski options closer to home than you might think, downhill (alpine) skiing is a social sport to consider that embraces winter. Downhill skiing is once again popular after losing ground to snowboarding for a decade, beginning in the mid-1990s, Duckett says. Both sports are fun, social and a great winter workout. Edmonton has three hills for downhill skiing and snowboarding right in the greater metropolitan area: Rabbit Hill, Snow Valley and the

TOP TIP: Head out for a winter walk and bring your binoculars. The Red Deer River Naturalists association has put together a birding trail map covering top spots to spy on our feathered friends in the city of Red Deer: rdrn.fanweb.ca.

TOP TIP: The Cities of Edmonton and Calgary both list snowshoeing trails on their respective websites: edmonton.ca and calgary.ca.

TOP TIP: Enter shinny hockey in the search window at either edmonton.ca or calgary.ca for an outdoor skating venue or pick-up game nearest you.

TOP TIP: Ski, snowboard or even learn to luge at Grande Prairies Nitehawk allseason recreation area: gonitehawk.com.

Edmonton Ski Club. Edson is home to Silver Summit. Of course, Calgary has Canada Olympic Park and the Rockies right at its doorstep. If you want to take your winter workouts up to another level, try cross-country (Nordic) skiing, one of the best all-round aerobic activities. It involves your arms, core and legs, so youll get your heart working and the sweat pouring in no time. Beginners, dont be scared: you can also do the shue on your skis and enjoy the trails at a more tranquil pace. It is also a great sport that builds balance, which is a key TOP TIP: The though often neglected Birchwood Trail System aspect of tness. The is 24 kilometres of City of Edmonton sets groomed cross-country and maintains dozens of skiing right in the heart groomed cross-country of Fort McMurray. ski trails in the city every Download a trail map winter. Tracks at Kinsmen from The Ptarmigan Park, Gold Bar/Goldstick Nordic Ski Club: and Snow Valley are lit ptarmigannordic.org. in the evening for safe after-work and evening expeditions. The City of Calgary maintains three groomed cross-country ski trails in the city and, with the Canmore Nordic Centre less than an hours drive away, there are spectacular options to enjoy the snowcovered alpine landscape. Pets often get left indoors when the snow ies, but dogs need a winter workout too. Skijoring is crosscountry skiing with your medium to large-sized dog attached to you by a special pulling harness. Its not for the faint of heart, but there are skijoring groups in Edmonton and Calgary that can help you and your pooch learn to skijor and y along the trails. Getting outside for exercise will also keep you t physically and mentally during Alberta winters. Outdoor exercise keeps you energized during the day and helps regulate wake-sleep cycles, which can get thrown o by the lack of daylight. And its possible to learn to love winter as you make tracks in the fresh snow. Check out skijoring in Alberta: www.youtube.com/watch?v=DhiLEHtP9jQ

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PREP FOR SUCCESS

A winter workout starts with a bit of planning. Check the weather, not just temperature but wind chill, before heading out. Dress for the wind chill temperature, which is a more accurate indicator of how your body will feel outside. Always let someone know your route and your estimated time of return if youll be heading out solo. Better yet, go with a group. There are walking, running, crosscountry skiing, snowshoeing, and even downhill skiing groups in most cities in the province. MOISTEN UP: One of the most neglected aspects of winter workouts is hydration. Winter air, as your hair, skin and nails will constantly remind you, is desert-dry. Drink water before, during, and after your activity. In the cold weather, we tend not to have the same cues from our brains to keep drinking. If a slug of cold water doesnt appeal to you during or after exercise, caffeine-free herbal teas are a cozy, warming alternative. Water bottle: $5 to $10. GET TRACTION: Like snow chains for your shoes and boots, slip some traction on over your fave winter footwear and get a grip on snow and ice. Prices range from $20 to $55.

COVER YOUR BASE: Rather than a bulky parka for warmth, think about layering up. A good base layer of long underwear and a long-sleeve undershirt, followed by eece layer, and then a winter wind-proof shell gives you more options to regulate your bodys temperature than just one heavy top layer. You heat up quickly as you exercise, but youll also cool down quickly if you stop for a breather. Prices on winter wear vary widely.

BE SEEN: Wear bright colours with reective components or add your own reective tape. Unless you can get away for a midday workout, youll need to think about staying visible in the dark Alberta winter. Roll of reective tape: $5. PHONE IT IN: The City of Calgary has developed a smartphone application with the citys walking and bike path routes, which include trail closures and weather and trail conditions, to help you plan a successful outing. Best part? Its free. www.itunes.apple.com/ ca/app/city-calgarypathways-bikeways/ id464141446?mt=8

SWEET TWEET: An all-weather emergency whistle that wont freeze up is an investment at a mere $4.

BE SKIN AND EYE SAFE: Don a pair of UVA/UVB sunglasses to cope with the glare off winter snow. Dont forget to slather on the SPF. Yes, even in winter. According to the Canadian Dermatological Association (CDA), snow reects up to 80 per cent of the suns rays, so you can actually get a double dose when youre out in the winter. Health Canada advises at least an SPF of 15 on exposed skin while doing outdoor winter sports, And the CDA recommends at least SPF-enhanced lip protection applied hourly. Lip balm: $3.

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A SCARE IN THE

AIR
BY KELLEY STARK

When we close the windows and turn up the heat, we may be breathing in more than we bargained for

inters in Alberta are cold. And so we batten down the hatches, make sure our windows and doors are sealed up tight and that the furnace is blowing warm air. Then wait for spring to come. Unfortunately, the lack of fresh air in our homes could be harmful to our health. Both chemical and biological pollutants have no way to escape unless we take the proper measures to get rid of them. This can include anything from mould and pet dander to radon and carbon monoxide. Though people with allergies, asthma, lung diseases, or suppressed immune systems are most vulnerable, dirty air can aect anyone. Luckily, there are ways to combat all the pollutants, either yourself or by hiring a professional. Chemistry Set Chemical pollutants can either be gases or particles. They can come from things like oil and gas appliances, paints, scents, pesticides, household cleaning products and air fresheners. There are many pollutants in the home, says Beth Nanni, program specialist for environment and infectious diseases for The Lung Association, Alberta & Northwest Territories. The most harmful are second-and thirdhand smoke. Second-hand smoke is what other people breathe when a smoker lights up. Third-hand smoke is the pollutants that linger absorbed by curtains, linens, furniture and clothes long after the smoker has gone. When uranium breaks down in our soil, it causes a gas to be released. This gas, radon, is odourless, tasteless, and invisible, making it hard to detect. Radon is a leading cause, second only to smoking, of lung cancer. Outside, the gas is diluted by fresh air, but in our homes (where it enters through cracks in the foundation) it can become quite harmful. Nanni warns, You can breathe in high levels of radon without knowing it. Kits to test for radon are available in many home building stores. If radon is found in your home youll need

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BUTT OUT: The most harmful pollutants are second and third-hand smoke.

TEAM CLEAN: Replacing furnace lters can minimize biological pollutants in your home.

to seal any cracks in your foundation and make sure that your basement is well ventilated. Carbon monoxide is another major chemical pollutant. Many Canadians die every year and thousands of others become ill or need medical attention from carbon monoxide poisoning, Nanni says. Carbon monoxide is produced in replaces, wood and coal stoves, space heaters, gas appliances, charcoal grills, camp stoves and automobile exhaust fumes. Carbon monoxide gets into the bloodstream and prevents the blood from carrying oxygen. In small doses, it makes us sleepy; in large doses it will cause loss of consciousness and death. To protect from carbon monoxide is as simple as buying a carbon monoxide detector. Professionals advise putting the detector in your bedroom. A qualied technician should inspect your gas appliances yearly. And never start your car, lawn mower or snow blower in an enclosed area. Dont let these run to warm-up in an attached garage even if the garage door is open. Hide car-start fobs out of reach of small kids especially if you have an attached garage. Nanni cautions against scented products (perfumes, shampoos, body lotions, air fresheners, candles and cleaning products). These scents are often made of 95 per cent synthetic chemicals designed to make our neurosensors think we are smelling a particular scent. While some people are only mildly aected by scents, others have severe reactions, including headaches, dizziness, fatigue, anxiety, loss of appetite and diculty concentrating. Scented products can also cause an asthma attack. Biological Subversity Biological pollutants are or come from living sources including mould, bacteria, pollen, viruses, animal dander, fungi and dust mites. Its virtually impossible to rid our homes of all biological pollutants, but we can take steps to minimize them. The two things that biological pollutants need to survive are nutrients and moisture. The most aected areas of our homes, therefore, are those that supply one or both of these things: bathrooms, basements, mattresses, carpets, etc. Nanni says, Controlling moisture is key. She suggests using exhaust fans in the bathrooms and kitchens, monitoring the humidity in your home and keeping moist surfaces, such as kitchen counters, bathtubs and shower stalls clean and dry.

The Lung Association also suggests reducing clutter, using a HEPA (High Eciency Particulate Arrestance) lter in your vacuum cleaner, covering your mattress with a mattress cover, replacing furnace lters and bathing or grooming your pet regularly.

FIND OUT MORE

AUDIT YOUR HOME The Canadian Lung Association has published a booklet called The Healthy Home Audit that you can order or download. In its 20 pages, youll nd all the problems you could have with air quality in your home, how to test for them and how to x them. Visit www.lung.ca. TEST TO BE SURE Asbestos is still used in buildings today. It can be found in pipe and duct installation, furnaces, ooring, ceiling tiles and textured paints. While the Canada Mortgage and Housing Corporation says, Asbestos can be used safely, and public concern has led to improved product design. But asbestos is a known cancer causer if inhaled. Asbestos bres released during renovations on older homes can be dangerous. Before you lift old tiles or cut into ductwork, call an asbestos testing company, and then, if necessary, another company that can remove asbestos according to safety regulations. Find out more at Health Canada, www.hc-sc.gc.ca, and enter asbestos in the search eld. DONT CLEAN WITH BLEACH Its harmful to the environment and breathing the fumes can be dangerous. Making a bleach solution is tricky because we cant control the pH of the water or ensure the time needed for proper disinfections. Bleach ends up doing more harm than good. Interested in making your own cleaning products? See www.youtube.com/watch?v=s-_WSRJhzdw.

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Research Rockstar

THE DOCTORS DAMARAJU: Sambu and Vijaya kick back, trading the lab for the movies.

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Showing
Samples from a researchers one-of-a-kind tumour bank are making appearances at cancer labs around Alberta and the world
BY MICHELLE LINDSTROM

NOW

/ PHOTOS BY KELLY REDINGER

ressed in khakis in a small, austere oce at the Cross Cancer Institute in Edmonton, he doesnt look like an action hero from the movies he likes to watch with his wife Vijaya but Dr. Sambasivarao (Sambu) Damaraju can don a lab coat and wield a microscope with the best of them. He is equally comfortable in oce wear, leading discussions, delivering lectures from the front of the theatre and approaching funding institutions on behalf of his worldclass tumour bank. He works each day to prove that the tumour bank he helps run is valuable to future scientists and doctors as they expand their knowledge of cancer research. His primary role is as a professor at the University of Alberta in the department of laboratory medicine and pathology. And, for Alberta Health Services at Edmontons Cross Cancer Institute, he also delves into cancer-focused laboratory research. He shrugs o any hint that his many responsibilities are too much for one person. More is just part of the job. More includes being the director of the Alberta Cancer Research Biorepository (funded in part by the Alberta Cancer Foundation) as well as the

organizations principal investigator for tumour bank ethics protocols. More also means he applies for several research grants, writes research papers, guides MSc and PhD students and post doctoral fellows, collaborates with other cancer-related professionals. Finally, more also means building multi-disciplinary teams as scientic director, such as the Canadian Breast Cancer Foundation Tumour Bank. The tumour bank is a way out of the scientic silo, because sciences tend to work in very small pockets, having little to do with each other. Because theres no prior infrastructure, degree or qualication to run or create a tumour bank, the banks prior to 2000 were largely within the domains of the pathology departments, Damaraju says. Oncologists and researchers saved cancer tissue samples in local freezers for their own research purposes. We tried to bring interested groups together and work under a common umbrella, says Damaraju. Eventually, that common umbrella became the ACRB, making tissue, blood and urine samples available to researchers around the world, but still promoting research within Alberta. A good 80 to 90 per cent of the samples are being used within Alberta. That is our mandate, says Damaraju. Beyond Albertas borders, samples have been sent to the United Kingdom, the United States and elsewhere in Canada.

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THE OTHER SIDE OF SAMBU

Do you have siblings? What memories come to mind when you think of them? I have one younger sister who is a teacher in Hyderabad, India. We used to play board games, y kites and I used to make her laugh while having dinner. She laughs loudly even now, and it used to land us in trouble with my parents. I understand your wife is also a scientist. What does she do? She is a scientist supervising and managing Dr. Carol Cass and Dr. Michael Sawyers labs at the Cross Cancer Institute. How did you two meet? While we were doing our masters degrees in 1977 in Hyderabad. She relocated to another city when we nished our masters and, only after the parting, we came to know we wanted to be more than friends. We got married in 1981 but were living in two different cities, separated by a 12-hour bus ride, for ve full years because our PhDs were our focus before starting a family. What do you do in your downtime? We love watching movies. We go to the theatre or we snuggle up in our home in front of the TV. We travel as a family every year to one destination or another. It has been a very important part of our discipline to occasionally get away from the scientic professional life. I also share the passion of visiting museums with my daughters. Do you ever completely get away from work when travelling? I always have my laptop and Blackberry because the type of work we do in tumour banking needs real-time solutions. I work in the early mornings to answer each days emails before my family is awake either on vacation or not. I receive several hundred emails per week and its difcult to play catch-up. I dont want my team losing time waiting for my input. The tumour bank rst collects tissues after diagnostics tests are done. The bank assigns detailed labels and a history to each sample so researchers can choose the most appropriate samples for future lab work. Hes driven by a curiosity in science, says medical oncologist Dr. John Mackey, a colleague and co-researcher of Damarajus. Hes also ambitious, hard-working and driven. The two met in 2000 when Damaraju rst began working at the Cross as a researcher then became the scientic director of the tumour bank (called the PolyomX program). There was very little in place when he arrived, says Mackey. His job was to build it and make them come. And come they did. Funding partners, scientists, researchers, doctors and most importantly consenting tissue donors, all got on board with the idea of a tumour bank to help research eradicate cancer. Since 2001, the number of samples used for research has doubled each year. Damarajus lab uses samples from the tumour bank on a regular basis for his studies as well. Two questions on which he collaborated with Mackey to answer: What determines the side eects of chemotherapy drugs 42 What advice would you offer a student considering scientic cancer research as a profession? Researchers should take an all-inclusive, multi-disciplinary approach. Cancer is a disease that is not dictated by one cell type or another, one organ or another. Researchers need to understand patients; where the sample is coming from and to have respect for every sample they use; its coming from a live patient.

Damarajus job was to build the tumour bank. Funding partners, scientists, researchers, doctors and most importantly consenting tissue donors, all got on board.

administered to breast cancer patients? And what are the genetic risk factors for getting breast cancer in Alberta? His studies are ongoing. The banks success is evident through its eective organization and administration, which all began with Damarajus vision to take a scientic approach to tumour banking more than a decade ago. He has a PhD in biochemistry and further training in molecular biology. My background and expertise made me aware that the freezing conditions, storage temperature and rapidity of freezing are critical for the integrity of some components of the tumour. Viable samples mean everything to cancer research. A viable sample that came with the donor patients history for researchers to review was unheard of until 2001. The samples are a bit like ne wine: the longer theyve been stored, the more information we have on the patients and the more informative the older samples are, says Mackey. Damaraju leads seven students and technologists in his genomics lab and 10 core employees in the tumour bank, whom he describes as passionate and highly specialized. None is tied to a job description since there isnt one. They do what needs to be done,

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A WEEK IN HIS SHOES

MONDAY: Put lab coat on. Review notes students and technologists took regarding samples from the bank. Study specimens, make comments all a reminder that my hardcore lab work is in the past. TUESDAY: Lead University of Alberta lecture about the development and purpose of the tumour bank. WEDNESDAY: Pound away on computer keyboard at home in the morning. Transfer information to work. Keep pounding. THURSDAY: Meet with funding agencies to prove reasons tumour bank needs more research money. Pound on keyboard, pound on head. Keyboard again. whether it means gathering consent letters from participants, entering samples into the tumour bank or working with specimens in the lab. This busy scientist appears to have little down time, but his face lights up with the mention of his wife, researcher Dr. Vijaya L. Damaraju, and two daughters, Deepti and Swathi. The mention of Christmas also gets him giggling like an excited, hopeful child. Many people ask if I celebrate Christmas coming from Hindu India and I nd it odd, he says. What is there not to celebrate at Christmas? Theres the spirit of joy and love, sharing and getting together as a family. The amount of spirit and energy is something I cannot describe. FRIDAY: Consult with co-researchers regarding paper on GenomeWide Association Studies. SATURDAY: Check emails so many! Watch a movie with Vijaya and discuss plans, meals and decorations for the Christmas season. SUNDAY: Call Deepti (elder daughter) in Toronto to see how her medical residency is going. Call Swathi (younger daughter) in Calgary to check on biomedical engineering PhD studies. Review next weeks calendar. Just as busy, but totally different.

Give the gift of a lifetime.

Mary I. Johnston knew melanoma would take her life. But that didnt stop her fighting the disease. She set a plan in action. After Mary died in 2004, according to her direction, family and friends established the Mary Johnston Chair in Melanoma Research at the Cross Cancer Institute. Today, Dr. Alan Underhill keeps Marys resolve by investigating the inner workings of melanoma, knowledge critical to driving development of more effective therapies.

To learn more about leaving a legacy to a cancer-free future, please contact: Derek Michael 780 643 4662, 1 866 412 4222 derek.michael @ albertacancerfoundation.ca

ohnst Mary J

on

albertacancer.ca
000LP.Legacy_Mary_1-2H.indd 1 10/28/11 10:03:18 AM

Top Job

I could never have done this without you. For Erin Langner, those eight simple words of gratitude from a patient are part of her reward as a cancer patient navigator.

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STEADY
BY CAROL CHRISTIAN / PHOTOS BY GREG HALINDA

as She Goes
A Fort McMurray patient navigator steers patients through the rough waters of cancer diagnosis, treatment and into survivorship
ts a chilly morning, and ready laughter can be say, OK. Here you go. And if I dont know, I nd out, heard down the hall at the Fort McMurrays Community she says, stealing a moment to talk between client calls at Cancer Centre. Patient navigator Erin Langner has the Cancer Centre, which is housed at Northern Lights popped in for a visit with a cancer patient. A quick How Regional Health Centre. Some clients want to know all are you today? and an earnest conversation is underway. the details while others dont, preferring to stick to the basics: the kind of Langner elds a Having somebody at the Northern cancer they have and range of questions: Who makes that Lights hospital to help move local cancer what they need to do to get better. appointment? What patients and their families through the Langners clients happens now? You process made sense. And Erin Langner and colleagues quickly take care of that, dont point to her boundless you? How does that was right for the job. energy, saying that her treatment work? Then, a sincere Thank you for all your information trails amiable nature puts them immediately at ease, prompting open conversation. Diagnosed in June with breast cancer, after her as she exits the room. The majority of Langners patient contact is over Bev Ewashko readily admits she found a valuable ally in the phone. The rest of the time, like today, shes briskly Langner. She is easy to talk to and gives the information covering the hallways at the health centre on her way to you need when you need it, Ewashko says. Not too much visit clients after surgery or to introduce herself to those at the beginning just as you need it. Ewashko recalls that when she was rst diagnosed, newly diagnosed. Langner sees herself, in her role as patient navigator, she was in such shock that everything went blank. I found she could answer questions that I had when as a walking reference book when it comes to the information she can oer to both newly diagnosed I had them, because I didnt have them all at the same cancer patients and those in survivorship. And the time, she says. It was really useful to have Erin there to list of questions they have can be endless. Whatever ll in the blanks. If Ewashko was a little down, Langners good nature they need. They want to know this, this and this and I

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helped raise her spirits. Shes just a really pleasant kind of person. Shes great for that, says Ewashko, who is having her nal chemo treatment following a lumpectomy. I really, really appreciate her knowledge. Those sentiments are echoed by Rosanne Hebert, a nurse who has worked with Langner even before she was the navigator. She knows her stu, says Hebert, noting Langner is very good at putting clients at ease. Erin has a very good rapport with the clients. Theyre quite receptive to her. Hebert pauses and chuckles, calling Langner a ball of energy. She sort of its here and there and everywhere, but for her its organized. When she wants something, she knows how to get it. And shes very professional in talking to people, very much a patient advocate. Langner has worked at the cancer centre since 2006 and is the rst navigator at the hospital, a position made possible thanks to a $150,000 donation from Syncrude Canada last year. The Alberta Cancer Foundation approached us with the idea and it made sense, says Will Gibson, spokesperson at Syncrude. We all know She told me Youve been like my rock. people who have had Thats enough for me. Thats why I do the cancer and understand its a long and complex job. Its so rewarding on my end. journey. Having somebody at the hospital to help local cancer patients and their families and provide information made perfect sense. Its denitely a needed program up here and Im glad we got it started. (Langner) is a good one for it, Gibson says. Shes a people person. Langner is a registered nurse with a bachelor of science degree and oncology certication. Before heading to Fort McMurray, shed worked in the Cross Cancer Institute in Edmonton. But theres no scrubs for Langner, preferring casual dress. I really wanted to do it because I wanted to make a dierence for the patients, especially for the newly diagnosed ones because theyre just lost, she says. I love the treatment side, but this is a bit more challenging. I like challenging myself. She tells a story of a young woman with cancer who was blindsided by the diagnosis and having particular diculty with aspects of treatment. Langner is glad to report that things have turned around for her former patient. I saw her a couple of weeks ago. Shes getting out of the house, shes doing much better. For Langner, the most gratifying part was seeing the womans improvement. A close second is the fact that the woman credited Langners help. She told me she could never have done it without me. She said Youve been like my rock. Thats enough for me. When they say that thats why I do the job. Its so rewarding on my end.

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Decision-making in cancer care is complicated. It can involve ethical dilemmas when patients cant decide for themselves

n the radiation oncology division at Calgarys Tom Baker Cancer Centre, Dr. Jackson Wu sees many dierent patients. Some cases are straightforward and some less so. For example, how aggressively should doctors treat an elderly and frail patient who has lung cancer? Situations like that come with many more questions that Dr. Wu and other BY CAILYNN KLINGBEIL health-care providers, as well as patients and their families, must grapple with questions that do not come with easy answers.

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These days, our culture is full of fast food, of getting movies on demand and Googling for everything. We pick and choose and right away the answer is delivered, in an instant, Dr. Wu says. But when it comes to more dicult treatments or situations, you cant just instantaneously get the menu, pick and choose and get it delivered. Sometimes, the decision-making takes more time and thought. Complexities in decision-making in cancer care and treatment are varied and, Wu says, may be driven by ethical principles. This is particularly so among the elderly and those who are in a weakened state because of cancer and its treatments. Determining the level of physical condition or decit and verbalizing realistic and achievable goals for therapy isnt always straightforward. Its conversation that requires the involvement of the patients family, to help assess the patients overall health. How aggressive cancer treatment should be is a very dicult question for the patient, the family, and the oncologist, especially in the elderly and in people who are physically and mentally drained after cancer treatment, Wu says. You get a lot of debate among clinicians across dierent disciplines and we dont have one right answer for it. Oncologists such as Dr. Wu, as well as patients and their families, can seek guidance from ethics committees at both the Tom Baker Cancer Centre and Edmontons Cross Cancer Institute, which comprise the resources oered by Alberta Health Services clinical ethics services. Other organizations also exist to provide resources and support, such as the non-prot Provincial Health Ethics Network. Our role is not to nd an answer for the people involved, but to provide a process to reect on the ethical issues, and to provide a number of options for potential decisions that could be made, Dr. Shane Sinclair, PhD says. Sinclair is the spiritual care co-ordinator at the Tom Baker Cancer Centre and a postdoctoral fellow. He also chairs the Tom Bakers Clinical Ethics Committee, which consists of 13 people, including health-care professionals from a variety of disciplines and members of the public. While Sinclair emphasizes that ethical issues are few and far between in the majority of cases at the Tom Baker Cancer Centre, they do exist. Thats where the committee can help, by making people aware of ethical issues and allowing individuals to make their own decisions in an some way, on the patients values, Nenshi Nathoo says. The Clinical Ethics Committee also completes formal informed manner. Oftentimes, there is more than one potentially correct answer, Sinclair says. Rec- clinical ethics consults when a major dierence of opinognizing that, and allowing people to share their opinions on what they believe to be ion exists between two parties. We walk through the the right answer facilitates a process and brings people together. Its nice and arming issues and hear each partys concerns and provide some to know that this is a tough decision, but weve gone through the best processes that we guidance around possible ways to resolve those issues, Sinclair says. know to ensure that we are making the right decision. Clinical ethicists also address these The more common ethical questions. Primarily, I do issues that come to the Our role is not to nd an answer for the people clinical consultations, Brendan Leier ethics committee at the involved, Sinclair says, but to provide a process says. Leier, who is the clinical ethicist Tom Baker include endat Edmontons University of Alberta of-life decision-making, to reect on the ethical issues, and to provide a and Stollery Childrens hospitals says, such as when to withnumber of options of potential decisions. About 90 per cent of the consultadraw treatment. Another tions come from the health-care team, scenario encountered involves patient competencies; how does the family and health-care team respond in but its not limited to that; I take calls from administrathe best interests of a patient who does not have the capacity to make his or her own tion as well as patients and their families. Leier, also a faculty member at the John Dossetor Health Ethics medical decisions? Having the presence of a member of the ethics committee who is involved within Centre, says those consults are dierent for everyone. the treatment area is an opportunity for doctors, patients and nurses to ask questions Consults might solve questions over philosophy of care, they might not normally ask, Sinclair says. Tom Baker Cancer Centre is recognizing dierences of opinions between the health-care team the importance of having such a presence; soon a sta ethicist will be working there and the patient or family, and inter-disciplinary probone day a week. The position is the result of a project that saw an ethicist, Al-Noor lems between team members. Leier also holds a teaching position. His academic Nenshi Nathoo (who is also the executive director of the Provincial Health Ethics Network) embedded in the clinical areas of the cancer centre for four months. Having position at the John Dossetor Health Ethics Centre such a person visible and present, rather than just a phone number to call, was quite (Faculty of Medicine and Dentistry at the University of Alberta) involves everyone from educating underpositive, Sinclair says. From Nenshi Nathoos perspective, the experience was eye-opening. I learned that graduate nursing students to physicians. The centre also ethical issues surround us everywhere, and that almost every decision about cancer hosts health ethics seminar series, workshops, symposia treatment had some moral dimension. The decision or discussion needs to be based, in and oers graduate courses in a variety of ethics topics. 48

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DECISIONS, DECISIONS, DECISIONS

Al-Noor Nenshi Nathoo, executive director of Provincial Health Ethics Network (PHEN), offers some examples of complicated issues that may come up for patients, families, health-care providers, cancer treatment centres or cancer prevention programs: When a child has cancer, and the treatment has a low chance of success and generates signicant side-effects or suffering and pain, when, if ever, is it appropriate to stop treatment and let nature take its course? What is the moral difference between euthanasia and withholding treatment? When a patient has not expressed wishes about his or her care and can no longer do so, and a patients family and their physician disagree over what treatment should be provided, whose opinion should hold power? When patients cannot speak for himself because he does not have decision-making capacity (either because of a developmental disability, mental illness resulting in a cognitive difculty, or is a young minor), who should make decisions for him? If the health-care team disagrees with that decision, what should they do, if anything? If a particular cancer drug has been approved for use in Canada but the cost is not covered by the provincial health system, is it OK for a cancer treatment centre to administer the drug if the patient pays for it? If one of the principles of health care in Canada is equitable access, how far should the system go in providing cancer care, close to the residence of citizens, who live in rural areas?

Leier says constant education is important as new ethical challenges arise. Allocation of scarce resources is an ethical challenge that is quite common in health care, Leier says. New and innovative technology also brings with it ethical challenges. Sinclair and Dr. Wu agree, noting that scientic advances, which have created more treatment options for patients, have also brought with them new questions. When it comes to the technological world that we live in, it brings ethical issues to the forefront, Sinclair says. Dr. Wu says that cancer no longer runs its course as it once did, instead, it is altered. In the past, if you had cancer X, I would be able to tell you that given cancer X at stage I or stage II or stage III, your outlook is XYZ. But these days, because there are a lot of treatment options, that particular outlook has changed, Wu says. While there is no easy answer to the many complex questions faced in cancer care and treatment, the various ethical committees and clinical ethicists help by reminding care providers the principles of patient autonomy, dignity, and justice. I think the Clinical Ethics Committee increases the ethical climate of the Tom Baker Cancer Centre, on both a clinician and patient and family level, Sinclair says. Weve done our due diligence, and it allows for people to make the most informed decision possible, while also knowing that theyve done everything they can, even when a clear-cut decision is not apparent.

FIND OUT MORE The Provincial Health Ethics Network (PHEN), which plays a supportive role to Alberta Health Services and other health-care providers in Alberta, is developing a resource for patients and family members who are grappling with difcult questions about treatment and health-care options. This will be in the form of a booklet, and eventually a series of pamphlets available in hospitals, community health centres and libraries, says AlNoor Nenshi Nathoo, the executive director of PHEN. A draft document is currently available at phen.ab.ca. Select Difcult Health Care Decisions.

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myleap /

INSPIRING INDIVIDUAL

STILL SMILING: John Jaydee de Munniks alter ego, The Silent Waiter, rst caused patrons at Smilies in Sherwood Park to laugh and then to donate to the Alberta Cancer Foundation.

Dont Say Dummy

In 2005, John Jaydee de Munnik, then 62, started having trouble speaking. A long-time smoker, his difficulty turned out to be throat cancer. A tumour was growing quickly, and it began to press on his trachea, interfering with his breathing. In May that year he needed emergency surgery: an eight-hour tracheotomy that meant John would no longer breathe through his nose or mouth but rather a small hole, called a stoma, at the base of his throat. Now 69, the retired engineering technician is a cancer fundraiser but purely by accident. Shortly after his surgery, when he still lived in Sherwood Park, he was a frequent patron of Smilies, a local restaurant and lounge. One day de Munnik offered a helping hand to a Smilies server. He delivered a set of condiments to customers who mistook him for a waiter and asked him something. When he couldnt respond, the idea of The Silent Waiter was born. In October 2008, The Silent Waiter (de Munnik, dressed in an oversized bowtie and hat) appeared at Smilies nightly, to clown around and serve a written joke with each meal. (Your dazzling beauty is fogging up my glasses. Why did you bring HIM?) 50 Patrons ate it up and the proceeds $12,500 went to the Alberta Cancer Foundation I have a good sense of humour and it helped me get through cancer, says de Munnik. His enthusiasm and humour really appealed to the Smilies crowd and to people in Lac La Biche where Jaydee now lives. In the summer of 2011, The Silent Waiter performed around town the Seniors Fish Fry, a pancake breakfast, local businesses and even some street performances. We raised $9,000 in Lac La Biche this year and $2,000 at Smilies in Sherwood Park. His running total is $23,500. After surgery, Jaydee had to learn to speak again. Its a raspy whisper, but fortunately, it still lets him deliver a punch line.
myleapmagazine.ca

winter 2011

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