Leap Fall 2015

ISSUE THE RESILIENCE

FALL 2015

CTV’s Rob Williams cycles long distance to raise funds in the name of friendship

THE PUSH TO DIGITAL

Do fitness apps and trackers really work?

RESEARCH ROCKSTAR

Cancer research and drumming all in a day’s work for Khaled Barakat

PLUS: Changing your diet the smart way, Team Tamara YYC, art therapy and more

PM#40020055

THE ALBERTA CANCER FOUNDATION’S

TO EDMONTON ON

REGISTER TODAY

1.855.250.MOVE BUSTAMOVE.CA

Join hundreds of women and men as they sweat, laugh, squat and lunge it out through six energizing fitness sessions while raising valuable funds for the Cross Cancer Institute.

CONTENTS COVER STORY: CTV host Rob Williams cycles for a cause through the annual Williams & Mudryk 100K for the Cross

FALL 2015 • VOL 6 • No. 3

FALL SPOTLIGHT

FINDING THE SPIRIT OF RESILIENCE

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DEPARTMENTS 4 OUR LEAP

A message from the Alberta Cancer Foundation

6 11 22

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FOREFRONT Team Tamara YYC, staying active every day, the 100th Cancer Care Guideline, tips for cancer care from afar, the buffalo bean’s anti-cancer properties.

NEXT GEN Young researcher helps search for glioblastoma relief

BEYOND CANCER In the face of tough times, resilience plays a key role in cancer treatment

13 SMART EATS

Thinking about changing the way you eat?

Here’s how to make it happen

14 42

ASK THE EXPERT Should I take aspirin as a preventative measure?

PLUS: Training for a half marathon, keeping fit on the road

29 PATIENT ENGAGEMENT

Designated patient and family advisors leave patients – and hospitals – better off

41

CORPORATE GIVING Nu-Way Floor Fashions funds a much-needed private space in the Tom Baker Cancer Centre

50 MY LEAP

Shannon McNeil’s legacy lives on

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STAYING STRONG FOR TAYLOR When treatments failed, the Bell family found ways to remain resilient

22 MORE TORTOISE THAN HARE

The long process between small breakthroughs and big discoveries

24 ALL IN THE FAMILY

After a close friend dies of cancer, the Scott family expands their brood and builds a happy home

26 THESE WALLS TELL STORIES

Art therapy provides a much-needed outlet for children that lose a parent to cancer

FEATURES 30 HIGH-SPEED HEALING

Enhanced recovery after surgery provides promising results for breast reconstruction

33 THE MORE YOU KNOW

A selection of new fitness apps and trackers promise to help you stay fit. But do they actually work?

42 TOP JOB

A southern Alberta physical therapist helps patients work through cancer’s physical challenges

46 RESEARCH ROCKSTAR

Local cancer researcher Khaled Barakat is on the cutting edge of biomedicine

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Message • alberta cancer foundation

Strength in Numbers TRUSTEES Angela Boehm, Chair Calgary Gary Bugeaud Calgary Christopher Burrows Edmonton Steven Dyck Lethbridge Paul Grundy Edmonton (ex-officio) Thomas Hodson Calgary Jordan Hokanson Edmonton Dr. Sandip Lalli Calgary Katie McLean Calgary John J. McDonald Edmonton Andrea McManus Calgary Brent Saik, Vice Chair Sherwood Park

Resilience. When we decided to make that our theme for this issue of Leap magazine, it wasn’t hard to come up with examples of different ways people display that characteristic in the face of cancer.

We see it every day in our roles with the Alberta Cancer Foundation.

Last month, we watched almost 1800 cyclists ride 220 kilometres over two days in the scorching heat. Many of our Enbridge Ride to Conquer Cancer participants donned yellow flags on their bikes, indicating a cancer diagnosis at some point in their lives. Some were in the middle of treatment, wearing chemo packs under their jerseys. Others wore lymphedema sleeves to get them to the finish line. Most participants had a personal cancer story and sadly, have lost someone to cancer. We all found solace at the strength in numbers at the event and more importantly, being able to make life better for Albertans by raising $7.8 million. You will read about one of those special families in this issue.

When Deana Keating, a single mother of three died of cervical cancer in 2011, her friends Andrea and Jim Scott left the hospital with her three children and without question, took them into their own family of four (and their two-bedroom Airdrie home). For the second year in a row, Jim took part in our Ride, with Team Cam Clark Ford Flyers, raising money so that other children don’t have to lose their mother (page 24). That’s resilience.

We also see it in our researchers, who sometimes spend years answering a single question or proving that their idea will work. Or sometimes, that it won’t work. As Dr. Ing Swie Goping says (page 22), And at the end of June, we you may spend years on a development and be presaw resilience pay off when pared to accept failure if it doesn’t prove beneficial to the provincial government patients. But at the end of the process, it’s still new to the scientific community and to patients, announced the building of a knowledge and that’s what helps keep her motivated. new comprehensive cancer And at the end of June, we saw resilience pay off centre at the Foothills when the provincial government announced the buildHospital in Calgary. ing of a new comprehensive cancer centre at the Foothills Hospital in Calgary. In the face of five announcements since 2005, our front-line staff, community and Alberta Cancer Foundation continue to persevere and work tirelessly towards the goal of a much-needed centre. We will stand with our partners in the government and Alberta Health Services to ensure this facility is built with the help of our donors so southern Albertans get the best care today and tomorrow.

We are honoured to witness such resilience across the province and hope you find as much inspiration from reading this issue.

Myka Osinchuk, CEO Alberta Cancer Foundation

Angela Boehm, Chair Alberta Cancer Foundation

Sandy Slator Edmonton Greg Tisdale Calgary

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myleapmagazine.ca

FALL 2015 VOL 6 • No. 3

ALBERTA CANCER FOUNDATION EDITOR: PHOEBE DEY CALGARY OFFICE Suite 300, 1620 - 29 Street NW Calgary, Alberta T2N 4L7 PROVINCIAL OFFICE 710, 10123 - 99 Street NW Edmonton, Alberta T5J 3H1 Toll-free: 1-866-412-4222 Tel: 780-643-4400 acfonline@albertacancer.ca VENTURE PUBLISHING INC. PUBLISHER: RUTH KELLY DIRECTOR OF CUSTOM CONTENT: MIFI PURVIS MANAGING EDITORS: LYNDSIE BOURGON, SHELLEY WILLIAMSON ART DIRECTOR: CHARLES BURKE ASSOCIATE ART DIRECTOR: ANDREA DEBOER GRAPHIC DESIGNER: BEN RUDE PRODUCTION MANAGER: BETTY FENIAK PRODUCTION TECHNICIANS: BRENT FELZIEN, BRANDON HOOVER WEB & SYSTEMS ARCHITECT: GUNNAR BLODGETT DISTRIBUTION: KAREN REILLY CONTRIBUTING WRITERS: Allison Badger, Caroline Barlott, Steven Butterworth, Lisa Catterall, Debra Clark, Caitlin Crawshaw, Jacqueline Louie, Lani Lupul, Nadia Moharib, Trina Moyles, Shelley Newman CONTRIBUTING PHOTOGRAPHERS AND ILLUSTRATORS: Bookstrucker, Curtis Comeau, Cooper + O’Hara, Jessica Fern Facette, Don Molyneaux, Rob Olson, Pedersen ABOUT THE ALBERTA CANCER FOUNDATION The Alberta Cancer Foundation is Alberta’s 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 Alberta’s 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.

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

TOGETHER WE’RE CREATING MORE MOMENTS FOR ALBERTANS FACING CANCER

The information in this publication is not meant to be a substitute for professional medical advice. Always seek advice from your physician or other qualified health provider regarding any medical condition or treatment.

Printed in Canada by Transcontinental LGM. Leap is printed on Forest Stewardship Council ® certified paper Publications Agreement #40020055 ISSN #1923-6131 Content may not be reprinted or reproduced without permission from Alberta Cancer Foundation.

Alber ta Cancer Foundation

Donate today at albertacancer.ca fall 2015

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Forefront • prevent, treat, cure

Fitness First Ten ways to be active in your everyday life

1. Do calf raises while brushing your teeth.

4. Walk around while talking on the phone.

5. Reach for the door frame as you leave the house.

8. Do half-jacks while the kettle boils water.

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2. Do leg raises while watching TV.

3. Do standing leg raises while making food or waiting for the microwave.

6. Stand up while reading the news or checking social media.

9. Stand on one leg while waiting for the bus.

7. Do five squats when you find yourself procrastinating.

10. Set an alarm to go off to remind you to walk around for one minute every hour.

myleapmagazine.ca

A Team for Tamara After Calgary journalist Tamara Gignac was diagnosed with colon cancer, her colleagues set out to help her family in any way they could. They ended up succeeding beyond their wildest dreams. Here’s how: In June 2014, Colette Derworiz visited her friend and

Calgary Herald colleague Tamara Gignac at the hospital.

Gignac had just been diagnosed with stage four metastatic colon cancer, and had begun treatment:

“You can’t plan financially for cancer,”she told Derworiz.

Soon after, with former-Herald journalist Suzanne Wilton and a number of their friends and colleagues, Derworiz started the TeamTamaraYYC fundraising campaign in an effort to help Gignac and her husband, Heath McCoy, as they dealt with her diagnosis and continued to raise their two young children.

“At first we didn’t know if we should do a pub night or something else, maybe something online,” says Derworiz. With Wilton spearheading the planning, their idea quickly turned into a huge fundraising night held at the city’s Crossroads Market. The event’s scope grew faster than anyone could have imagined – from a small get together to an evening with sponsors including local restaurateurs and businesses.

After the event was done, the fundraising spirit lived on through a Team Tamara Facebook page. Over Christmas, the Alberta Cancer Foundation also featured Gignac in one of its More Moments video campaigns, which inspired viewers and went on to help raise more than $90,000 for the organization.

“We needed to do it as a big group hug.”– Colette Derworiz In the year since her diagnosis, Gignac’s words and graceful spirit had moved those around her – and even strangers who read and heard her words. Derworiz had made plans with TeamTamaraYYC followers to run in the Scotiabank Calgary Marathon this past May. Sadly, two days before the race, Gignac died.

“It didn’t go the way we thought it would, obviously,” says Derworiz, who had borrowed a wheelchair from the Alberta Cancer Foundation to push Tamara in along the race route.

“Everyone was finding out she died the day before we were supposed to run. Suzanne said we needed to do it as a big group hug. It felt right to do what we were going to do in her memory, instead.”

Alber ta Cancer Foundation

Tamara Gignac and her husband Heath McCoy pose with #teamtamara T-shirts during a fundraiser.

The Meet the Press fundraiser brought in upwards of

$110,000 to help Gignac and her family.

Tamara’s More Moments video inspired viewers to help raise more than

$90,000 SEE TAMARA TELL HER STORY: https://albertacancer.ca/videos

fall 2015

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100th Cancer Care Guideline Released

Top 5 Tips for Cancer Care From Afar

For cancer patients and caregivers, the support of friends

and loved ones can make a big difference – but when you live in another city, province or country, this can be difficult.

Still, there are ways you can help a cancer patient, even from afar. Folks at the MD Anderson Cancer Center asked cancer patients, survivors and their caregivers on its Facebook page to share advice for helping loved ones with cancer, when you live somewhere else. Here are their top five tips:

100th guideline for best clinical practice in cancer care. The guideline was developed by the AHS Guideline Utilization Resource Unit, or GURU, and the Alberta Provincial Tumor Teams (APTT). It focuses on acute promyelocytic leukemia (APL), a rare cancer of the white blood cells which is most commonly diagnosed in men and women around 30 years old, and is intended to provide standardized direction for treatment, management and follow-up.

“Prior to the establishment of GURU and the APTTs, there were large differences in the care provided across the province,” says Dr. Elizabeth Kurien, radiation oncologist at the Tom Baker Cancer Centre and medical director of the APTT. “Particularly after the associate cancer centres opened in Medicine Hat, Lethbridge, Red Deer and Grande Prairie.”

The APTTS are 13 teams made up of medical oncologists, nurse practitioners, surgeons, radiation oncologists, pathologists, radiologists and researchers and are fully supported by the Alberta Cancer Foundation, enabling them to come together for focused discussions. The guidelines are designed to help healthcare professionals deliver a higher standard of care in Alberta. In the past year the guidelines were referenced more than 15,800 times off of the AHS website (albertahealthservices.ca). An additional 67 of the new 100 guidelines, which are also located on the U.S. department of Health and Human Services National Guidelines Clearinghouse website, were accessed more than 280,000 times.

The former Alberta Cancer Board created GURU in 2006, in support of the APPT.

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• Stay up to date on your friend or loved one’s treatment.

Learn as much as you can about his or her condition so you can understand what he or she may be going though. If your friend is sharing updates through social media or on a website like CarePages (carepages.com), make sure you’re following them. That way, you can respond when your friend or loved one needs it the most.

• Send a text message. Sending a short, simple message will let your friend know you care. Try to do this on days when he or she has treatments, follow-up appointments or important scans. Your message could make a big difference during a stressful time.

• Mail or email pictures. Make your friend smile by sharing a photo of a fun time you shared. You can text or email the photos, or print and mail them so your friend can hang them in his or her hospital room.

• Send handwritten letters, cards or a care package. A personal note or card is a great way to let a friend know you care. Or you can also make your friend’s life a little easier by sending a care package. Include magazines, restaurant gift cards, hats, blankets or any other personalized gifts your friend might appreciate.

• Web chat and watch a television show or movie you both enjoy.

Most cancer patients don’t want to talk about cancer all the time. Find ways to remind your friend about life outside cancer.

If you share a favourite TV show, set up a time to web chat or video chat and watch the show together. It could help take your friend’s mind off cancer and bring you closer together.

myleapmagazine.ca

Source: MD Anderson Cancer Center

In June, Alberta Health Services (AHS) released its

Chicken Spinach Enchiladas Note: Chicken contains iron and protein that may help ease fatigue, and spinach contains vitamin K that may help low platelets. This recipe is also appropriate for neutropenic diets.

NUTRITION: Servings Per Recipe: 4 Per serving: Calories: 384; Total Fat: 9.22 g; Saturated Fat: 3.3 g; Protein: 31.14 g; Carbohydrates: 46.23 g; Fiber: 9.39 g; Cholesterol: 65 mg; Sodium: 469 mg

INGREDIENTS: • 1 bay leaf • 1 clove garlic • A pinch of oregano • 1/4 tsp ground black pepper • 1/4 tsp paprika • 1/3 tsp cumin (plus more for spinach) • 1-1/2 tsp chili powder • 1/3 tsp canola oil • 1/3 small onion, chopped • 1/3 can diced tomatoes • 1/3 jalapeño, chopped • 1/4 tsp salt • 12 corn tortillas • 2 cups frozen spinach, defrosted • 1 can plain, no salt added tomato sauce • 1 large boneless skinless chicken breast with rib meat • 4 tbsp queso fresco

DIRECTIONS: Put chicken breasts at the bottom of a large pot. Preheat oven to 375 F. Add bay leaves and garlic. Fill with cold water until chicken is just covered.

Bring to a boil. Reduce to a low simmer and cook 15 minutes or until chicken is cooked through (You can cut into one and test). While chicken is cooking, chop up onion and jalapeño.

Cook onion and jalapeño in oil for about

Alber ta Cancer Foundation

3 minutes or until onion starts to soften.

Add spices and canned tomato, reduce heat to low and cover. Cook 10 minutes.

Remove chicken from water when fully cooked and shred with a fork and large knife. Add to tomato mixture.

Add 1 tbsp of the poaching liquid to the chicken-tomato mixture and mix well.

Taste and add salt accordingly. Combine spinach and 1 tsp of cumin. Add a scoop of chicken-tomato mixture and a scoop of

spinach to each tortilla (heat tortillas first in microwave if they are stiff). Lay filled tortillas seam-side down in a baking dish.

Mix any remaining tomato-chicken mixture with the tomato sauce. Pour tomato sauce over tortillas and top with queso fresco. Bake in the oven until warmed through and cheese is melted, about 20 minutes.

Source: MD Anderson Cancer Center

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University of Lethbridge’s Bean Counters Turns out being full of beans can improve

your chances against contracting cancer.

Led by biology professor Dr. Roy Goldsteyn, researchers at the University of Lethbridge have discovered that the extracts of the buffalo bean (Thermopsis rhombifolia) have anti-cancer properties.

Goldsteyn’s team is working with French pharmaceutical company, Pierre Fabre Laboratories, in the hopes of identifying the chemical compound that enables the bean’s cancer-fighting abilities. To that end, Goldsteyn recently harvested 10 kilograms of buffalo bean plants on the U of L’s property which are being overseen by biology

professor and herbarium director Dr. John Bain. After harvesting the plants, they will be sent to the French lab for analysis.

Subsequently, after purifying the buffalo bean’s compounds, the French lab will send the compounds back to Goldsteyn’s lab for more testing.

Ideally situated in southern Alberta, Goldsteyn’s lab, in conjunction with University of British Columbia researchers, is also looking at a flower in the sunflower family for its possible cancer-fighting properties.

It’s known that animals will not eat the flower, and previous research has shown toxicity to cancer cells.

Under the Tuscan Sun As if riding more than 200 kilometres

over two days in the Enbridge Ride to Conquer Cancer were not enough, one team decided to up the ante just two weekends before this year’s event.

The plan was simple: to climb the hill near Dr. Nigel Brockton’s Calgary community, Tuscany, on a bike enough times to equal the distance of climbing Mt. Everest.

Inspired by a group of Australians that had completed the same “Everesting” feat – to date some 660 worldwide people have completed the challenge – Brockton, with the support of his One Aim team, became the first person in Alberta.

“Every year I set some kind of crazy riding challenge,” says Brockton, who founded the One Aim team in 2008 for the first Ride to Conquer Cancer. “I worked out how many times I would have to go up and down to do it. One hundred fifty-seven would have but I didn’t want to come up short – so I did 161.”

Brockton took more than 17 hours to complete his mission, raising $520 for the Alberta Cancer Foundation in the process.

The money topped up what Brockton and his team members needed to enter this 10

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year’s Enbridge Ride to Conquer Cancer. The One Aim team’s 2015 goal is to raise more than $300,000, while its five-year fundraising total for the Alberta event is close to $2 million, with proceeds benefitting Alberta’s cancer centres.

myleapmagazine.ca

Next Gen • supporting young minds

FINDING A CURE

Searching for relief for glioblastoma patients helps guide this young researcher’s work

BY STEVEN BUTTERWORTH It’s the promise of a cure that drew Tanveer

Sheikh into a “dream team” of scientists at the University of Calgary. The young postdoctoral fellow, who has earned a bachelor’s, master’s and PhD degree, joined Dr. Jennifer Chan’s lab in June of 2013, where he now studies aggressive cancers like glioblastoma.

“When I see people suffering from devastating diseases like brain tumours I feel helpless, and the only option I feel I could help them with is by better understanding the biology of the disease which could pave the way for ultimately finding a cure for them,” he says.

“For glioblastoma there is no cure in particular, so this is why we came to work on this, to find something that will benefit the patients and make them live longer.”

Glioblastomas are aggressive tumours normally found in the brain or spinal cord. They are quick to spread, and Chan’s dream team project (funded by a host of organizations including the Terry Fox Research Institute and the Alberta Cancer Foundation) is committed to studying them and other forms of cancer.

Over three decades, glioblastoma treatment has changed very little, but Chan’s team is out to fix that.

QUICK STUDY: Tanveer Sheikh works Their work is focused on developing promising new in Dr. Jennifer Chan’s lab at the University drugs, and they project that the first of the new drugs of Calgary. discovered through their research will be ready for clinical trials in two to four years. The lab’s research has received $8.2 million in funding and is staffed by some immense talent in terms of her critical thinking, generating ideas and successful of the best minds in cancer research, including Sheikh.

Sheikh’s work focuses specifically on CIC, a specific collaborations. I got to learn a lot from her mentoring,” he says. He adds that, while gene mutated in almost all oligodendroglioma working with her, he had the opportunity to study brain tumours in the neurodeveloppatients. Oligodendroglioma is a class of less-aggres- ment context and was able to share ideas amongst his peers in other labs.

Chan says it is Sheikh’s meticulous work ethic and quiet attitude that make him sive brain tumours that affect patients in early adulthood. It mutates in various ways as it progresses to good at his work. “He’s been excited to learn new techniques in my lab,” she adds. higher grades, but ultimately surfaces as glioblastoma. She notes that the studentships and fellowships funded by the Alberta Cancer The CIC mutation in these patients was recently identi- Foundation are invaluable in the effort to support trainees like Sheikh in Alberta.

Sheikh first joined the lab through Chan’s fied in Chan’s lab as a hallfunding, but has since received his own mark of this disease, thus “In the long term, I would like to have my fellowships. “Every person they fund is like pointing to a need for glioma research. “Unlike own lab working in the same field of cancer a seed they throw out there, and if science is for them, that seed becomes a future some tumours, even when research,” says Tanveer Sheikh. researcher that is going to join the army and gliomas are detected early fight the battle,” Chan says. it is virtually impossible to Sheikh says he hopes to develop his own methods when it comes to further study remove them with surgery. We have to understand the biology of the disease so we can find particular vulnera- surrounding glioma and similar cancers. “The first thing I would like to develop is a bilities of the cells that we might be able to target with model of this kind of tumour,” he says. “The second thing I would like to do is perform other means, like chemotherapy,” says Chan. It’s a chal- preclinical tests and finally clinical trials with it using the latest drugs to see what effect the drugs would have on the gene in this base model.” lenge, but one that Sheikh has embraced.

And Sheikh’s aspirations don’t stop in Chan’s lab. “In the long term, I would like to Working with Chan has left him with new knowledge and admiration for her commitment. “Dr. Chan has have my own lab working in the same field of cancer research,” he says.

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Beyond Cancer • stories of survivorship

Choosing Resilience In the face of tough times, resilience plays a key role in cancer treatment

BY JANINE GIESE-DAVIS

What does it mean to have resilience as you go through your cancer experience and move into survivorship after treatment?

Cancer changes so many aspects of life, from how you physically function to how you relate to those you care for most. For most people, strong emotions and feelings of vulnerability come up along the way. It can be difficult to know just how to navigate those sometimes overwhelmingly strong emotions and how to bounce back to feeling comfortable.

According to the American Psychological Association, resilience “is the process of adapting well in the face of adversity, trauma, tragedy, threats or significant sources of stress.” Studies show that there are many ways to cope successfully with these changes, and that your history, culture and upbringing will determine which ways feel natural for you. That said, it’s also important to know that resilience is not a trait you are born with, but a series of active choices. You can set a course of action that will improve how you feel, and learn how to manage the emotions that might feel out of control. Those angry, sad, fearful feelings are normal, and allowing yourself to experience them, but know that you can take a break from them, is a crucial aspect of resilience.

Connecting with others who are supportive of you and taking the opportunity to become supportive of others, are the two sides of the resilience coin. We are social creatures, and somehow just talking with others who allow you to express everything that is on your mind will lighten your load. Passing that along to others can reaffirm your sense of confidence and courage even when you are feeling low.

Flexibility during change also protects you and helps you to bounce back. Most of us want to retreat toward what we know and understand during times of stress, even if those ways of coping are too rigid to help us in this new situation. Embracing change and allowing yourself to grow in ways you did not anticipate can allow you to create a new path post cancer. For many people this involves re-appraising their goals and values, and allowing unhelpful aspects of their previous lives to fall away in favour of new ways of thinking and living.

Taking care of yourself at each step along the way can become the fertile soil from which your new life can 12

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grow. The discipline to care for yourself can go against ingrained patterns of caring for others first, or of prioritizing work over self-nurture. However, even a simple discipline of engaging in one positive activity per day allows you to take time to do things you enjoy, and can bolster your resilience and confidence to handle what’s difficult.

Finally, limiting your exposure to what feels too difficult to consider can protect and nurture your resilience. When my husband was dying of a brain tumour when I was 24 years old and had a young infant, I knew that I would have to face becoming the breadwinner for my family and coping with tremendous loss. I felt overwhelmed by a flood of fear anticipating this. But I set a course of action with discipline that helped me to face it gradually. On the first day, I let myself think about the future for just a few seconds, then closed the door on it mentally and emotionally until the next day. I promised myself that I would think about it a few seconds longer every day. As I did this practice day after day, the length of time I could stand to face what would come grew longer and longer. My comfort with my emotions grew over time, and the disciplined-but-nurturing way I took care of myself paid off. Facing what you feel is vital to making effective decisions, but so is knowing when it’s time to give yourself a break.

Resilience is this ability to engage in the difficulties at hand while remaining engaged, active and self-nurturing, and allowing others around you to connect and care. myleapmagazine.ca

Smart Eats • food for life

Embracing Change Thinking about changing the way you eat?

Here’s how to make it happen

BY KAROL SEKULIC

When it comes to healthy eating, most people know the basics, but not everyone chooses to follow them.

Knowing what to do doesn’t always translate into action, and changing the way you eat is a long process – the first part of which is feeling ready to make the plunge. If you think you are ready, consider these tips for success: • Determine a meaningful reason for you to change your eating habits. Ask yourself: What motivation do I have to stick with it?

I want to change my eating to help lower my blood pressure. This can help me reduce the risk of developing long-term health problems.

• Set behaviour goals instead of outcome goals.

This works to help change what you do, rather than simply influencing a number or a measurement.

You’ll focus on things within your control, like eating a specific number of servings a day, rather than other factors that can affect your blood pressure, like stress.

I am going to increase the amount of vegetables and fruit I eat each day.

• Talk to yourself positively about the change you want to make. We believe what we tell ourselves.

I can do this. Each day that I reach my goal, it will get easier for me to make this a habit for life.

• Make small changes and do it gradually.

Often people set out to achieve too much too soon. Doing this can be overwhelming and it can set you up to fail. Working toward smaller goals can result in positive feelings when you accomplish them, meaning you’re more likely to keep on making changes.

Hard-to-reach goal: I am going to eat seven servings of vegetables and three servings of fruit every day.

More realistic goal: For the next week, I am going to bring one cup of raw vegetables with me to work on Monday to Friday and eat it as a snack.

• Consider tools to track your progress.

This can be as simple as putting a sticker on your Alber ta Cancer Foundation

calendar every day you meet your goal. Or you can opt to track your food intake in a notebook, with a smartphone app or a computer program. This can help determine if emotions or habits influence your food intake.

I’ll put a sticker on my calendar each day I meet my goal.

• Organize your environment to help support your goal. Research shows this makes us more likely to eat healthier. Make healthier food options easier to eat by having them be the first thing you see when you open your fridge or pantry.

Alternatively, if you know that having cookies in your home triggers you to eat them, either avoid buying them or store them out of sight.

I will wash and cut up my raw vegetables and put them in a clear container in my fridge to make them easier to remember to pack for work.

• Reward yourself for making progress. Research shows that tangible rewards can help with motivation and help you to set future goals.

I will download a new song once I meet my vegetable target for one week.

If I meet my vegetable target for one month, I will buy a new tool or book.

Remember that setbacks happen and they are a normal part of making changes.

Vacations, travel, financial stress and negative self-talk are just a few examples that can impact your dietary choices. Use these setbacks as a chance to learn rather than to judge yourself. Following these steps can help put your nutrition goals into action.

Karol Sekulic is a registered dietitian with Alberta Health Services who has expertise and interest in the areas of weight management and nutrition communications.

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Ask the Expert • a resource for you

KNOWLEDGE IS POWER We ask medical and fitness experts how to stay fit when you’re on the road, aspirin as a preventative medication and training for a half-marathon

BY LYNDSIE BOURGON AND SHELLEY WILLIAMSON

How do you maintain a fit and healthy lifestyle while on vacation or travelling?

Dr. Lisa Belanger, health behaviour specialist and co-author of Inspire Me Well: Finding Motivation to Take Control of Your Health, says you don’t have to sidetrack your fitness routine when you’re not at home. “There are certain prompting cues from your environment that make those health behaviours easier. For example, if you have a routine that you go to the gym every morning, make sure your gym bag is packed and it’s by the door. There’s a series of events that happen to get you there – but as soon as you are taken out of that environment, for example if you’re travelling, it makes it more challenging. It does take planning.” To that end, she advises making sure to bring your running shoes and clothes, since if you don’t have your gear you are not likely to go out of your way to buy new ones on your trip.

She also suggests scouting out where you will be staying to see what amenities can help you maintain your fitness routine, such as running trails, a pool or gym in the hotel or even a fitness club that allows dropins. “Ask somebody about those running routes, like the concierge of the hotel. Normally hotels will provide you with information about safe running routes.” For those who prefer yoga, Belanger suggests accessing workouts via YouTube videos or other online sources, and practising in your hotel room. “There are several videos that come up that are fantastic to use, especially if there are not gyms close by or run14

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ning may not be an option. It’s a way to de-stress as well.”

And what you put in your mouth is also a consideration, so planning what you will eat is an important step toward maintaining your healthy routine. “I always travel with snacks because if I get too hungry I get ‘hangry.’ The best things that I have found so far that don’t freeze or melt are packs of mixed nuts and seeds. I always have that on-hand, and my husband makes our granola bars so we bring those, too. I started being creative with what I could bring or get at a grocery store, or asking instead ‘where is the grocery store?’ ” Since most people eat out for nearly every meal when they travel, often that means also consuming unhealthy food options like the popular but dangerous all-you-can eat buffet. “At those all-inclusive resorts, I think a lot of people take it as a challenge, but there are healthy ways to eat at those things too,” notes Belanger. “They provide a lot of fruit and seafood options. And when you have the option of them preparing it in front of you, you can also ask for low- or no-salt options, but you have to ask.

A lot of restaurants are becoming adept to vegan options, vegetarian options, low-sugar options. And so they are adapting to requests and you can absolutely make those as you go.” myleapmagazine.ca

What are the benefits of taking aspirin as part of heart attack and stroke prevention? How much should I take and when should I start?

The short answer is that, if you’re healthy, you shouldn’t worry about taking aspirin every day as a preventative measure. But for those at risk of heart disease, studies have shown that taking aspirin can become part of a necessary regimen for preventing heart attacks and strokes.

According to Gary Lopaschuk, a cardiovascular researcher at the University of Alberta’s Cardiovascular Research Centre, aspirin prevents blood clot formation and has anti-inflammatory actions. Studies have even shown that during a suspected heart attack, chewing an aspirin tablet can help lessen heart attack severity (this should only be done after calling 911). “Aspirin therapy should not be initiated without first consulting your physician, who can help assess the risks and benefits of aspirin therapy,” he says. Your doctor can recommend the right dose of aspirin to use, ranging from 81 mg to 325 mg of aspirin per day, the latter being the typical dose of an aspirin tablet given for headaches and to relieve pain.

People having a suspected stroke should not take aspirin, since some strokes are caused by bleeding into the brain, which would be worsened by the pill.

Which brings Lopaschuk to note: “The potentially harmful side effects of taking aspirin outweigh any beneficial effects in healthy patients without major risk factors for heart disease.” So if you don’t have heart disease, you shouldn’t take aspirin as a preventative measure.

I am training for a half-marathon.

What can I do to avoid getting injured along the way?

Craig Brososky, physiotherapist and owner of WePhysio Performance & Wellness in Edmonton says it comes down to three factors when trying to avoid injury: manage your training volume, get strong and move well. This is especially true for women, who are more likely to get injured than their male counterparts. More women participate in half marathons than men, at a rate of about 60 per cent women to 40 per cent men. Overall, strength training is the best way to increase training capacity, but “Controlling training volume or load is the number one way to prevent injury,” says Brososky.

He suggests running more frequently for shorter distances, rather than trying to pack in a 20-kilometre stretch all at once for a novice runner. “Injury prevention requires a few components. Number one is load management.

Progress the training volume only as your body gets used to it. Don’t be a slave to the program in the book – it’s only math, and it’s not a program designed for your body. It’s actually a program designed for nobody,” he adds.

Beyond strength and load management, the final way to protect your body against injury while training is to move well, he says. “Running is actually a fairly skillful movement. The good news is we can definitely improve our skill level.” Speed and running drills can help perfect your stride.

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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SPECIAL REPORT:

FINDING THE SPIRIT OF RESILIENCE

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hether it’s going through round-after-round of chemotherapy treatments or decades spent working in a lab, cancer demands a lot from those it touches. This issue of Leap explores how cancer patients, their families and healthcare professionals alike have adopted a resilient attitude through hard times.

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STAYING STRONG FOR TAYLOR When treatments failed, the Bell family found ways to remain resilient

ALL IN THE FAMILY After a close friend dies of cancer, the Scotts expand their brood and build a happy home

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MORE TORTOISE THAN HARE Two cancer researchers give us a glimpse into the long process between small breakthroughs, big discoveries and the journey in between

THESE WALLS TELL STORIES Art therapy provides a much-needed outlet for children that lose a parent to cancer

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THE RESILIENCE issue

Staying STRONG When treatments failed, the Bell family found ways to remain resilient

BY CAITLIN CRAWSHAW

A

talented singer with dreams of performing on Broadway in New York City, Taylor Bell had no qualms about moving to Toronto after high school to pursue her ambitions. Soon, she was landing roles in plays and was accepted to the Randolph Academy for the Performing Arts, a private arts college that trains students in dancing, singing and acting. At 19, the Calgary native had life by the horns.

But when her mother flew in for a visit, she found Taylor feeling rundown. “She had a bad cold that wouldn’t get better,” says Jacqueline Bell. And, seemingly unrelated, Taylor’s gums bled when she brushed her teeth. To be on the safe side, Jacqueline made an appointment for her daughter to see a doctor when she returned home for a visit, two weeks later.

What should have been a quick visit to the doctor became something else entirely.

Concerned that Taylor was seriously ill, the physician ordered bloodwork to be done that afternoon. “By 6 p.m. they were on the phone, telling us to go to the hospital im-

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mediately. They didn’t like the way the results were looking,” says Taylor’s father, Don. Referred to the Tom Baker Cancer Centre, Taylor met with hematologist Dr. Mona Shafey. Her assessment was grim: there was a 99 per cent chance that Taylor had leukemia.

The entire family reeled from the news, including Taylor’s younger brother, Travis. It seemed impossible. For one thing, the symptoms had seemed trivial – Jacqueline figured her daughter had a bad flu and maybe gingivitis, particularly since Taylor had always been healthy and energetic, keeping herself busy with baseball and performance. And at 19, she seemed too young to get cancer.

But there was no time to come to terms with the diagnosis: treatment was to begin immediately. Shafey explained that myleapmagazine.ca

FOR TAYLOR

MAKING MEMORIES: After moving back to Calgary, Taylor spent some much-needed relaxation time with her family during her treatment.

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THE RESILIENCE issue

been pulled out of school. “We went into a tiny little, ugly room,” says Jacqueline. Before the doctor could say anything, Taylor spoke. “She said, ‘It didn’t work, did it?’ ” says her mother. “Dr. Shafey broke down and said, ‘No. It didn’t.’ ” As a doctor who has to give bad news to many cancer patients, Dr. Shafey tries not to get upset during these difficult conversations with patients – but sometimes tears happen. “Emotions are running high and the news can be devastating. I try to hold it Even though her life had been derailed, Taylor in, but sometimes I’m overwhelmed and find myself crying with them,” she says.

With no other curative treatments available, Shafey told the family that Taylor kept her chin up. Like anything she did, she approached treatment with a spirit of adventure – and invited her would likely have six months to live. She advised her young patient to think about how friends along for the ride. They often accompanied her she wanted to spend that time: “I think it’s important to let people know that they are during her treatments and kept her company during her going to die of their disease and to take advantage of the time left to do what they want hospital stays. Don recalls that sometimes the nurses to do,” she says.

It was a traumatic prognosis for the entire family and, once again, there was little would give them crayons to sign the window with: “I could look across the crowd and see Taylor, and she’d be time to work through the grief. Now Jacqueline, Don and Travis had to be strong for Taylor, to help her make the most of her final days. “You just grinning.”

As part of her treatment, “We became more supportive of each have to somehow remain positive,” says Don. “Every minute of every day, you try to make it work and try to Shafey recommended that Taylor receive a stem cell other. We watched out for each other,” make it the best. You try to turn every negative into a says Jacqueline Bell. positive. You’ve got to.” transplant. She was a good One negative-turned-positive was Don’s unemploycandidate for the procedure, which involved injecting stem cells – derived from the ment. Just before the leukemia diagnosis, he’d been laid off from his management bone marrow of a donor – into her body to fight the cancer job at a large warehousing company. As Taylor went through treatment, he’d been cells. If it worked, she’d be cured. Her chances were 50/50, glad to be around, and now that time was even more precious he was even more grateful. Jacqueline, a flight attendant, was also able to be home thanks to a supportbut everyone on her side was optimistic.

For three months after the procedure, the Bell fam- ive employer.

The couple decided that Travis, then 16, should continue going to school and stay ily waited nervously to find out if it would work. When some follow-up results came back from the lab, Shafey busy with sports. Looking back, he’s grateful for that decision: “It helped me keep my reviewed it three times before asking the family to mind off of things.” Plus, there was comfort in a familiar routine. Nevertheless, Travis come in for a meeting. She prepared herself for a tough spent a lot of time with his big sister. At this time, Jacqueline and Don watched their son carefully to make sure he was coping. “The big push was keeping an eye on Travis conversation.

The day of the appointment, the doctor met with the to make sure he knew he was important, and to be there for them,” Jacqueline says.

That winter, the family spent a lot of time cuddled in front of the living room fireentire family – including Taylor’s brother Travis, who’d leukemia, like other blood cancers, was often curable – but treatments needed to be aggressive. In fact, within 24 hours of confirming the diagnosis of acute myeloid leukemia, Taylor began the first of four rounds of chemotherapy as an inpatient at the Foothills Medical Centre.

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myleapmagazine.ca

Bearers of Bad News Tough talks are a fact of life for healthcare teams. Fortunately, there are supports to make it easier For patients and families, a diagnosis of incurable cancer is nothing short of traumatic. But for the bearers of bad news – usually doctors with support from nurses or members of a healthcare team – these conversations can be painful, too. It can be hard to find the right words.

“Traditionally, it’s an area that’s been under-resourced. The majority of medical training is focused on curing and fixing,” says Bert Enns, who leads the Tom Baker Cancer Centre and Calgary Zone Palliative Care Collaborative project. “Many doctors have had limited training about how to have these conversations when a cure isn’t possible.”

Fortunately, there are resources in Alberta to help clinicians deliver the news with care and compassion.

• Workshops

place, where they talked and watched movies. Taylor wanted a dog, so they adopted a black lab puppy that she named Cooper (and nicknamed “Crazy Cooper” for his household antics). With Christmas approaching, it was important to Taylor to get her shopping done early. “We spent a lot of time at Cross Iron Mills,” Don says.

But Taylor’s health was declining rapidly, and there wasn’t time to do everything the Bells had planned.

The family had hoped to take Taylor to Disneyland and family friends had successfully crowdsourced donations for the trip. Unfortunately, Taylor passed away before they were able to go as a family. While grief-stricken, the Bells decided to go in her honour a couple of months later.

In the time between Taylor’s initial diagnosis and to her death, family and friends rallied around the Bells.

“The support we had was just incredible – and we needed it,” says Don. But to get through the day, they drew strength from within the immediate family. During these harrowing months, the family did their best to be gentle and patient with one another, says Jacqueline: “We became more supportive of each other. We watched out for each other.”

It’s been only a year-and-a-half since the Bells lost Taylor, and they continue to hear from people who were touched by her talents. But while their grief is fresh, the family is doing what they can to add to her legacy – and help others affected by cancer. In addition to being interviewed in the media, they’re planning to start fundraising in Taylor’s memory. “If anyone was ever sick or needed help, she would be the one to raise funds,” says Jacqueline. “She was very, very caring.”

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Alberta Health Services (AHS) offers workshops focused on difficult conversations. Advice includes listening more and talking less, asking patients what matters most for them when a cure isn’t possible, and addresses issues such as how much patients want to know about anticipated timelines.

Enns, who teaches some of the Calgary sessions, says the workshops also challenge healthcare workers to think differently about the concept of hope. “We often think hope equals cure, but in my work with families I’ve seen that hope is incredibly dynamic,” she says. When a life-saving treatment isn’t likely, patients can still hope for good days, conversations with loved ones or peaceful endings.

• Video Series With funding from the Alberta Cancer Foundation, Enns collaborated with Calgary’s Survive and Thrive Productions to create a video series called A Balancing Act. Through interviews with the Bell family and clinicians involved in their daughter’s care, their video explored how healthcare professionals can support young people facing incurable cancer and the families that love them.

• Advance Care Planning Online Resources These focus on conversations and documentation to clarify wishes for treatments should a person become incapable of participating in healthcare decisions. The process provides an opportunity to explore an individual’s values and goals related to quality of life and end-oflife wishes.

• Goals of Care Designation This is a medical order that describes the focus of care for an individual. A physician completes the document with input from a patient, who then carries it with them everywhere in a Green Sleeve plastic holder (along with their personal directive). If they encounter a different doctor – at the emergency room, for instance – the physician can make sure the patient receives care that aligns with previous discussions. It can also help these physicians deliver bad news in a more personalized way to a patient they don’t know. Patients can request the form and Green Sleeve from their doctors.

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THE RESILIENCE issue

KEEPING AT IT: Dr. Lynne-Marie Postovit’s research has been tackled in five-year increments.

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More Tortoise

Than Hare

Two cancer researchers give us a glimpse into the long process between small breakthroughs, big discoveries and the journey in between

BY DEBRA CLARK

/ PHOTOGRAPHY BY COOPER + O’HARA

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hat drives people to do the work they do? It’s an age-old question refining what it is we’re looking at,” she says. “I’m driven by with no simple answer. But even the most motivated employees can making a difference for patients. While it might not be my experience a slump in enthusiasm from time to time. For cancer researchers, lab, per se, that makes the discovery, if we contribute let’s the ability to rise above roadblocks and waves of uncertainty is a necessary skill as they say 50 per cent of the knowledge that led to the discovery tirelessly work to discover and test scientific breakthroughs that might one day affect somewhere else, that still benefits patients in the end. millions of lives.

“It’s the small breakthroughs,” she says, that make the Dr. Ing Swie Goping, a breast cancer researcher and associate professor at the University wait worth it. “None of the major advancements were of Alberta, is all too familiar with the patience it takes to reach a breakthrough. Goping dis- just one person, province or country – so to keep that in covered a particular protein in breast tumours (commonly referred to as BAD) that could mind is very humbling.”

Over the next five years, Postovit’s lab hopes to develchange the way some patients are treated. “We’re trying to find a way to identify patients that would do well with a particularly aggressive chemotherapy called taxane – currently, op a biomarker test to detect ovarian cancer at its beginwe don’t know why some patients have done well and some haven’t,” she says. “If proven, ning stages, when it’s localized and highly curable. “Right patients that don’t have a particular marker now we don’t have something like wouldn’t have to go through this very agso a lot of the time the disease “None of the major advancements that isn’t detected until much later on,” gressive treatment, with quite serious toxic were just one person, province she says. “The experiments are deside effects, for no benefit.”

Goping and her research team have signed in such a way that there really or country – so to keep that in studied hundreds of breast tumour samisn’t a dead end, just redirection – mind is very humbling,” says taking that piece and applying it to ples in an effort to prove that women who Dr. Lynne-Marie Postovit. a different question. You have to be had high levels of BAD protein in their tubrave because there is a lot of uncermours responded well to taxane therapy, and vice versa. “I don’t think it’s a long time,” she says. “I think that when we look at the tainty as you work through the initial discovery.” history of actual developments that turned out to be clinically useful, they can take 40 Postovit admits she sometimes feels a little hopeless years – there are successes and obviously setbacks all through that time, but it’s a pro- when she interacts with patients, knowing her work likely won’t benefit some people in time. “It’s very humbling but cess that has to be done.”

Goping agrees that there is an intense amount of pressure, but it’s all part of the pro- at the same time it provides even more motivation to get in cess. “You have the pressure to make the discovery in the first place and if it’s not ‘the one,’ there and work towards something for the next patients – be OK with that,” she says. “You have to be willing to say ‘I accept failure’ because it’s part the next breakthroughs,” she says. “If you do really great work, then great things will come.” of the process and at the end of the day it’s new knowledge and everyone benefits.”

Armed with an unbreakable spirit, she turns every disFor Goping, one has to be both stubborn and tenacious while drawing support from the international scientific community. “Whatever you’re doing in the scientific realm is appointment into an opportunity. “It’s what keeps me knowledge that can be used for something you never would have expected it to be used motivated and going through,” she says. “I don’t know if for,” she explains. “As long as it’s published and out there for other people to see – that’s I chose this line of work or if it chose me.” the whole scientific purpose. As long as I believe that the scientific process is working, Both Goping and Postovit agree that the biology of that this new knowledge we’ve generated is important, then I can stay motivated.” cancer is exceedingly complex and funding is crucial to Dr. Lynne-Marie Postovit, an associate professor in the University of Alberta’s depart- allow scientists to move forward and get to the point where ment of oncology, examines both breast and ovarian cancer in her lab, and agrees with everyone can survive cancer. “I might not find the magic Goping that cancer research is a truly global effort. “I always say one of the great things, bullet for ovarian cancer, but one of the brilliant minds in when you think about resiliency and science, is that as we move through the process, we my lab might, so we want to make sure the next generation disclose and publish our work. So even when we fail, it’s a win for the field in terms of of researchers stay in the field,” says Postovit.

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All in the Family

BY NADIA MOHARIB

/

PHOTOGRAPHY BY DON MOLYNEAUX

After a close friend dies of cancer, the Scotts expand their brood and build a happy home

FULL HOUSE: The Scotts pose for photos near their home in Airdrie. Missing is Braden Keating.

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ndrea Scott’s life changed in an instant when, in 2011, her friend Deana Keating, a single mother of three, died of cervical cancer. Without even a word, Andrea and her husband Jim – already parents to two young children – left the hospital with three more. “We didn’t expect to have five children,” Andrea says today. “But I also didn’t expect my friend to die.”

Andrea knew Keating was sick about a year earlier, but didn’t know how bad it was. “I was just under the impression she was doing OK and everything was going to be OK. We talked about other stuff,” Andrea says. “She didn’t want to think about it. She was tired after being sick and exhausted raising her kids as a single mother.”

The ugly truth revealed itself on a June afternoon, when the Scotts learned Keating had taken a turn for the worse. By the time the couple arrived at the hospital, Keating had already died. The couple met with Keating’s relatives and three children as a social worker tried to determine the trio’s fate.

With relatives unable to take the children, the Scotts knew what they had to do. “We didn’t even talk about it,” Jim recalls. “I could read Andrea’s mind.” Soon after, the couple went to court to officially become their parents.

Expanding their family was easier said than done. The couple and their children lived in a two-bedroom home in Airdrie. Barely able to make ends meet, Jim was dealing with the aftermath of losing his excavating business. As the family turned to food banks to feed seven, Canada Revenue Agency was garnisheeing a hefty portion of any income they did have.

“I didn’t think about the financial ramifications.

You are there. You do what you do,” Jim says. “I truly believed if we lived life appropriately our needs would always be met.” Soon, Jim went to work at a car dealership. “I was penniless and had never sold a car in my life,” he says. “You pony up or you wallow in it.”

And pony up they did. Andrea took Keating’s children up on their one request – to continue the homeschooling their mother had started. “I’m no teacher and I’m not that patient,” she says. “But I managed to pull off Grade 1. I was winging it.”

The family’s first summer was spent camping, an activity they used to bond and, as much as they could, try to forget the tragedy which brought them all together. And there was the day-to-day logistics of sharing a cramped home and the children’s shift from friends to siblings. Jim – who also shrunk by 100 pounds as his family grew – says: “there were days when it was either food for them or myself.”

Despite a tough transition, the children – Konin and Kailey, the Scotts’ biological children, and Keating’s Angel Ana, Aurliea and Braden – meshed and the couple knew they had done right. “For the first six months, Angel Ana wouldn’t talk to anyone except our

Alber ta Cancer Foundation

three-year-old daughter, Kailey,” Andrea says. “I can’t imagine what would have happened if she had been sent away. I don’t know if she could have made it.”

Some, seeing their struggles, questioned why the pair took on the tremendous task of opening their hearts and home to the children. But the couple never doubted their decision. “When there are three kids in a room who have lost their mother, you can’t just walk away,” Jim says. “We were pretty sure they wouldn’t stay together if we didn’t take them. It was either us or social services. We figured it had better be us.”

Keating’s grandmother, Lesley Munns, couldn’t be happier. “I’m proud of the kids and certainly proud of Jim and Andrea. The kids have a wonderful life because of them. I feel really blessed they took over,” says the 92-year-old. “They’re five kids that are just family, that’s all there is to it.”

With the help of Andrea’s mom, Carole, who gave them an early inheritance, the Scotts moved into a new, three-bedroom home. And life is good, says Jim, who cherishes a Sunday tradition with his brood. “I make pancakes for the children,” he says of how he starts his only day off. “No matter how tired or crappy I feel, I just do it. They enjoy it.”

This past August, for the second year in a row, Jim planned to bike in the Enbridge Ride to Conquer Cancer benefitting the Alberta Cancer Foundation, to raise research dollars to save people like Keating in future. Andrea says she has been too busy with the daily grind to be philosophical about the twist her life has taken. But when it comes to helping her friend, she is certain of one thing: “You can sleep at night,” she says.

“We get to see them grow up,” Jim adds, like any proud father might.

A ChAt with AurlieA, Age 11 THE BEST PART ABOUT HAVING A BIG FAMILY: There is always someone around to hang out with if you are bored.

It’s awesome when you are on vacation.

Everyone gets to hang out all the time.

PET PEEVES: In the car, people start fighting. There are so many of us in a tight space. If my little sister is singing, my brother is yelling at her to stop it.

MAKING IT WORK AT HOME: We have set chores. Mine are wiping the counter, washing the pots and sweeping the floors.

HOW THE TRANSITION HAS GONE:

I thought it would suck and I would miss my mom a lot. But it doesn’t. I still miss my mom, but I don’t think it sucks.

WHAT YOU MISS ABOUT YOUR MOM: Just everything.

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THESE WALLS

Tell Stories

Art therapy provides a much-needed outlet for children who lose a parent to cancer

BY TRINA MOYLES

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PHOTOGRAPHY BY JESSICA FERN FACETTE

myleapmagazine.ca

DRAWING IT OUT: (l-r) Lucia Spaziana, Haley Toll, Marie Butler, Olivia Pennell and Giorgia Spaziana work together on art projects at the Cross Cancer Institute.

teacher in northern Saskatchewan. There, she saw the need to integrate creativity and life skills into the curriculum to help inspire a different kind of right-brain learning amongst her students. Butler saw the positive effect on her students and she, too, was inspired to tap into art making during her personal time. “I wasn’t making pretty things,” she recalls, smiling at the memory. “But I was shaping myself as a woman. A huge piece of my identity was formed through my art making.

It led to starting my own business and, eventually, to pursuing a master’s [degree] in art therapy.”

Butler has been working with children at the Cross Cancer Institute for more than four years, and has seen the positive impact that art can play in helping a child heal from the loss of his or her mother or father to cancer. She attends to families at the hospital, facilitating “goodbye rituals” with children and their parents to help ease the process, and works one-on-one with kids on a weekly basis, helping them to heal and build resilience.

Corinna Spaziana first sought out the art therapy services at the Cross when her husband Joe was diagnosed with an inoperable glioblastoma multiforme or GBM, a rare and aggressive brain tumour, in December 2011. The doctors told Joe and Corinna to prepare for the worst: that he wasn’t likely to make it through the treatment, and if he did, he’d only have nine to fourteen months to live. Their daughters Giorgia, then three years old, and Lucia, two, began to attend and participate in one-on-one art therapy sessions with Butler.

“There was no cure for the cancer, so we had to prepare the girls for their dad’s death. I think for them it was the difficulty of anticipating when it was going to happen,” says Corinna, reflecting on the initial days of he walls in Marie Butler’s office are covered from floor to ceiling her husband’s diagnosis and treatment.

Despite the odds, Joe underwent rounds of radiation and with paintings, bright textiles and uplifting quotes. The tables are filled with paints, crayons and a thick heap of rainbow-coloured felt. There’s a chemotherapy and outlived the doctor’s prognosis by more purple-felted wizard perching on her desk and “Grandmother Willow,” a chair Butler than two years. He attributed his success to the “three Fs” made from bent willow boughs, rests in the corner like a queen’s throne. It’s a visual that had governed his life: faith, family and friends. Corinna feast for the eyes, a place for creative expression and an emotional refuge for families and her daughters were with Joe every step along the cancer journey. He died on January 7, 2015, at the age of 40, leaving struggling with the overwhelming grief of losing a loved one to cancer.

Since 2011, Butler has been working as an art therapist at Edmonton’s Cross Cancer his family with many inspiring memories.

“I don’t know where we’d be today without the art Institute, providing arts-based therapy services and support to children as young as two years, to teenagers, and even their parents. Most of Butler’s clients are children therapy support services,” Corinna says. “The girls were who start working with her when a parent, diagnosed with terminal cancer, is days able to create and just be children in an environment that was safe for them – where away from dying. Losing a parent is a they could express their feelings.” traumatic event for a child, shattering “The girls were able to create She believes that art therapy a sense of self-identity and well-being and leaving them with a feeling of and just be children in an environment helped her daughters build strength to endure and slowly abandonment. At the Cross, Butler that was safe for them – where they overcome the challenges the uses art therapy techniques – painting, could express their feelings,” family continues to face. sculpting, building and doll making – to says Corinna Spaziana.

“One of the biggest things I’ve help kids express what they’re feeling, learned is that kids will do a lot of often without words.

“The art therapy is how we can meet the needs to keep kids ‘glued together,’” says the inner work that’s painful because [making art] feels Butler. “We use a lot of glue and sparkles, but the metaphor is the glue. You could good,” says Butler. “Sometimes kids can’t talk about walk into a room and wonder why a kid is pouring out half a bottle of glue, but that their pain because the psyche immediately goes into glue represents something to the psyche. So we work with the metaphors of art. The shutdown, for good reason. We’re built to flight, fight or freeze. But the art coaxes out the pain and the story therapist introduces the tools of art as the medicine.”

Butler first discovered the healing power of art while working as a special education because it’s actually pleasurable.”

T

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THE RESILIENCE issue CHILD’S PLAY: Toll and Butler have been working together at the Cross since March 2015. Their work in art therapy helps children understand and change the trauma they experience.

It’s what Haley Toll refers to as the theory of it as an aspect of themselves, or someone they would like to be,” Toll explains. “A neurobiology. Toll is a pediatric art therapist and firefighter, for example, could be a metaphor for stability. Someone to protect them, Butler’s newest colleague at the Cross Cancer Institute. their home and all of the losses they’re afraid of experiencing.”

Art therapy helps children change the story of trauma they’ve experienced.

She began work in March 2015 and has already formed a As therapists, Butler and Toll are enabling kids to put aside the story of shame and supportive working partnership with Butler.

“Neurobiology is a huge trend in art therapy, to help sadness that they are likely to feel after losing a parent to see things in a different light: us to ground our theory,” explains Toll, who received that they are full of integrity, strength and capable of cultivating resiliency in any her masters of art therapy at Concordia University and difficult situation.

“Once a child learns how to make meaning from the loss – that’s resiliency. has extensive experience working as an art therapist in northern British Columbia and Botswana. “The body Children have a profound understanding of themselves due to pain. We teach them relaxes when we are making art, providing some safety that although you can’t take away the pain and you can’t prevent pain from happening in the future, they have the ability for the brain to recall traumatic images to know they can withstand,” says and make sense or meaning of these “Sometimes kids can’t talk about their Toll. “We teach them that they’re painful experiences,” she explains.

One therapy technique that both pain because the psyche immediately beautiful in their vulnerability – that it’s okay to be vulnerable.” she and Butler use with children goes into shutdown, for good reason. andThis summer Corinna’s is making dolls from felt or cloth – We’re built to flight, fight or freeze. daughters will take part in a the soft material is comforting for a child to touch and hold. Children But the art coaxes out the pain and the summer camp called “Good designed to bring together who’ve lost a parent may feel a range story because it’s actually pleasurable,” Grief,” a small group of children who’ve of emotions – from fear or anger says Marie Butler. lost a parent to cancer. Funded by to shame and sadness – stemming the Alberta Cancer Foundation, it’s from a sense of abandonment. A doll becomes a transitional object, something they make and the first time Butler and Toll will offer the camp and they are excited to witness the take home with them to help a child through a difficult impact of kids coming together.

“Building that connectedness between children is a wonderful skill for them to transition. Toll and Butler have seen children create all kinds of dolls, like wizards, police officers and even learn at such a young age,” says Toll. “The camp will give them an opportunity express their emotions and share it with one another. It’s about building an identity that they family members.

“When a child creates a character, they relate to aren’t alone.”

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Engagement • giving patients a voice

Our Most Valuable Resource Designated patient and family advisors leave patients – and hospitals – better off

BY JESSICA DOLLARD

As the Patient & Family Advisory Council (PFAC) meetings wrapped up for the summer earlier this year, I took some time to interview all of our patient and family advisors to evaluate how the year went.

The PFAC is made up of patient and family advisors who share their experiences in receiving cancer care, to stimulate conversation on how to improve the care that’s provided. A portion of my role has been dedicated to recruiting, onboarding, organizing and leading this council. The new cancer centre, along with the evolution of care at the Tom Baker Cancer Centre, is the PFAC’s key focus. For those of you who like numbers, the PFAC has 14 members and from September to June, each attended 10 meetings and three orientations, making their total time contribution to the organization in excess of 800 hours.

I marvelled at their year-long wholehearted commitment as volunteers, especially when Calgary’s new cancer centre project was put on hold last December.

To conclude the year, I asked participants about their goals, high and low points throughout the year, and the things they’ve learned. Not surprisingly, almost every member noted the hardest part of the year as being the postponement of the project, yet they remained committed and the interviews revealed that the key to keeping them engaged was trust and purpose.

The first thing the advisors talked at length about was the value of taking time in the formative stage of the council to build trust through simple team building exercises. The orientation process took about 12 hours, and much of that was spent bonding and sharing stories. The seeds of trust were planted and they grew exponentially over the year, as the advisors shared their personal healthcare stories, one by one, at each meeting. This was an incredibly courageous act of vulnerability and it allowed advisors to understand each other on a deeper level. It allowed them to quickly overcome personality friction and differences of opinion by seeing past their assumptions of each other.

What we are really talking about is trust. Without trust, nothing authentic or productive can happen in teams or partnerships. In the interviews, it often sounded like: “I feel I belong to this group and it makes me want to come back.”

“I look forward to meetings and the friendships that I’ve built.”

Alber ta Cancer Foundation

“We had an instant bond and so we got things done quickly.”

The last point tickles me, because it highlights what I’ve learned in grad school about leadership. It illustrates that the costs and time spent on focusing on teamwork is easily outweighed by the productivity it achieves. There is a cost-benefit associated with teamwork. But how did we as an organization maintain trust after the project was postponed?

We provided them with a sense of purpose. The message we sent to them was clear: our work continues, no matter what. And it did. Many different providers of varying disciplines from the Tom Baker Cancer Centre attended meetings to gain feedback from the PFAC and even to observe the process. Each time staff consulted with the PFAC there was always an “Ah-ha!” moment for everyone around the table.

As providers and administrators, we assume we know what our patients and families experience but we must test our assumptions. It was a two-way street of learning, and the PFAC members also learned a lot about the daily lives of staff and the healthcare system.

Not surprisingly, the high point of the year for most PFAC members was the last meeting in June where they heard from the staff at the Tom Baker Cancer Centre about what had been done with the PFAC’s input. Hearing about what had changed as a result of their perspective was powerful for the PFAC members. The basic principle of engagement is to always close the loop on what has been done with people’s ideas, stories and suggestions. There was much to celebrate, despite the fact that in June there was still uncertainty about the future of the new cancer centre.

Providing the PFAC with a sense of purpose in turbulent times was crucial but what surprised me was how fond they had grown of each other. It taught me that the fuel for resiliency is trust and relationships.

If you are a patient or a family member who feels you can share your healthcare story in a way that we can learn from you, please contact me at Jessica.Dollard@ albertahealthservices.ca.

Jessica Dollard is the patient-centred experience advisor on the Calgary Cancer Project. As a consultant in engagement and patient experience, as well as an actor, film and theatre producer, programmer, medical skills trainer and executive certified coach, she brings a creative background to this work.

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Enhanced recovery after surgery provides promising results for breast reconstruction

BY SHELLEY NEWMAN

I

t’s shocking, yet possible. Thanks to special techniques that enhance a patient’s recovery after surgery, women can now undergo major surgeries – such as a mastectomy and immediate implant breast reconstruction – and return home the same day.

Dr. Claire Temple-Oberle, surgeon at the Tom Baker Cancer Centre in Calgary, is a leader in this emerging field and has so far offered this approach to 60 women who have had reconstructions over the past year.

“We noticed women struggling with recovery from traditional perioperative management, so we began looking at options,” she says. “The enhanced recovery after surgery model is about giving patients a better recovery journey, with less time in the hospital and better outcomes with fewer complications.”

The procedure used by Temple-Oberle and her team is based on a model used for colorectal surgeries, which was adapted for breast reconstruction. “Most of the women we approached were quite keen about the idea,” she says. Patients who undergo the enhanced recovery method with same day discharge must be in good health and live within an hour of Calgary, should complications arise.

There are three major areas of focus for the procedure: pre-operative, operative and post-operative care. As Temple-Oberle notes, counselling is a large part of pre-operative care. “Staying in hospital after surgery often has a sense of security,” she says. “But, there are advantages to getting home sooner, and these can include patients being with their families, getting better sleep and having lower risk of infection – all of which can reduce recovery times.”

In addition to counselling, pre-operative care includes medications like antibiotics, pain and anti-nausea drugs. “Another aspect is keeping patients warm, both before and during the procedure,” says Temple-Oberle. “If a person’s body temperature drops by one degree, there’s an increased risk of complications.”

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PHOTO COURTESY ALBERTA HEALTH SERVICES

THE MORE YOU KNOW: The inaugural Alberta Breast Reconstruction Awareness Day took place at the Tom Baker Cancer Centre in October 2013.

During the operation, an anaesthesiologist (like Dr. Jeremy Hamming, who works with Temple-Oberle) may use a combination of medications like intravenous anaesthetic, epidurals and local anaesthetics.

Using these agents helps limit the patient’s pain response and avoid the use of volatile gas, which can increase post-operative nausea.

Post-operative care includes pain and anti-inflammatory medications, as well as hydrating and staying mobile. When patients return home, having a responsible adult with them is essential. “Both the patient and the adult will learn about the drains and wound sites related to the surgery,” Temple-Oberle explains.

“And the caregiver will also wake the patient up and ensure that they take their pain meds regularly.”

At-home support is provided by a medical team, as patients receive phone calls and answer recovery questions on the days following the surgery. “We followed our first 30 women rigorously to study their experiences, and they scored better than people who were in the hospital. It’s incredible how well they did.”

Having witnessed the success of this implant reconstruction procedure, Temple-Oberle and her colleague, Dr. Christiaan Schrag, began using the procedure for more extensive reconstructions. “We’ve started using enhanced recovery for abdominal flap breast reconstructions, which are often used for delayed reconstructions after a person has had radiation, for example,” she says. “The method has been positive for these procedures, as well, and women are often able to return home in three to four days, instead of the traditional five to six.”

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the international leads, developing guidelines on the procedure for the Enhanced Recovery After Surgery Society. “We’ve established a team of plastic surgeons and anaesthesiologists from around the world to provide expertise on the method,” she says. “From this, we’ll publish what we suggest are the best practices and recommendations for these types of reconstructive surgeries.

“We were so fortunate to be able to pursue enhanced recovery, and we could do this thanks, in part, to support from the Surgery Strategic Clinical Network, CancerControl Alberta and the Alberta Cancer Foundation,” she adds. “There’s a lot you can do to help the body and soul recover, and enhanced recovery may provide a great option for people.”

Breast reconstruction awareness (Bra) Day On October 21, breast cancer patients and their supporters are invited to learn more about breast reconstruction and other available options. In Calgary, the event will take place at the Alberta Children’s Hospital from 5:30 to 8:30 p.m., providing a wide variety of learning opportunities.

This year’s activities will include a show and tell, where peer volunteers provide mastectomy patients and their support people the opportunity to see and talk about reconstruction. Other activities will include a mock operating room, a body casting area, lectures and exercise options.

“People need information to make choices,” says Dr. Claire TempleOberle. “Many women may feel reconstruction isn’t for them, and that is perfectly fine. At BRA Day, our biggest goal is to educate women and to empower them to make their own personal choices.”

For more information, visit bra-day.com/events.

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The

MORE

You Know

A selection of new fitness apps and trackers promise to help you stay fit. But do they actually work?

BY CAROLINE BARLOTT

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owadays, you can track your every move – from the moment you wake up and even while you’re sleeping. Countless fitness trackers and apps offer an opportunity to monitor your sleep, steps, caloric intake and even health problems. Most people are familiar with the Fitbit, that sleek band seen around the wrists of everyone from your best friend to your neighbour to the girl at the gym. Yet that’s just one of an overwhelming array of fitness devices and apps on the market.

Do these devices help or hinder the person using them? Does this data provide us with real answers or does it take us away from the simplicity of eating, sleeping and exercising well? Dr. Lisa Belanger, a health advocate who runs fitness retreats in Canmore, believes the devices are hugely beneficial – providing motivation, excellent information and visual reminders – when used correctly. The problem is that the dizzying amount of information available can cause people to give up too easily. “It’s the New Year’s resolution thing where you’re like: ‘I’m going to change everything in my life.’ And then the next

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day, you’re back to exactly what you were doing before,” she says. “You have to have obtainable wants and things that you are going to conquer.”

Most of the tracking devices created by companies Fitbit, Garmin, Misfit, Jawbone, Polar and Suunto track metrics like hours slept, caloric intake and number of steps taken. Instead of focusing on all of these metrics, Belanger suggests starting with just one habit you’d like to revise, and then choosing the device that can help you best monitor that. The idea is that movement, nutrition and sleep are all interrelated – and improving one should positively benefit the other. So if you start improving your sleep, that could increase your energy, allowing you to move more during the day. That, in turn, could improve myleapmagazine.ca

your food intake by helping your body crave healthier foods. You can use one of the tracking devices and just pick the data you want to focus on.

Add to that sport technologies like individual heart rate monitors and bike sensors that can talk to your tracker. Many of these gadgets are very effective in improving lifestyle, according to personal trainer and co-owner of Blitz Conditioning, Chris Tse. He uses a Garmin device to track his running distances and then he’ll upload the information to the Nike+ running app. For him, the social aspect of trackers and apps can also motivate a lot of people, as their own behaviours can be compared to those of their friends.

For example, the Strava app connects runners and cyclists with others in their area – so you can see how long someone took to run a certain segment of the river valley, and compare your own time. For a lot of people, that can help keep them accountable, says Tse. Once you get into the habit of using a device to monitor one aspect of your health, Belanger says, you can start looking at the finer details – for those who would like to lose weight or manage a medical condition, several apps can help track diet, and those metrics can be taken to a nutritionist or dietician who can suggest appropriate changes.

Both Tse and Belanger recommend MyFitnessPal, which allows users to input the precise details of each meal into the app, thus giving you a breakdown of how many calories are left for the day, along with listing the amount of carbs, fat, protein, sodium and sugar you’ve eaten. You can also log the exercise you’ve completed over the course of a day, which will impact the calories you consume.

“It’s the New Year’s resolution thing where you’re like: ‘I’m going to change everything in my life.’

And then the next day, you’re back to exactly what you were doing before,” says Dr. Lisa Belanger.

Belanger suggests starting off by using a new fitness app for a week. That’s enough time for the information to be useful without the risk of becoming overwhelmed by the need to constantly input large amounts of data. Tse warns that tracking every minute detail of your food and exercise can actually be harmful for some: “It can be problematic for those who become hyper-sensitive or hyper-aware, especially when it hinders their day to day activity because they’re so focused on it,” he says. MyFitnessPal even recognized the potential for its misuse – in the past, individuals with eating disorders were using the app to ensure their caloric intake was at a dangerous minimum. It’s since been altered so that unhealthy weight loss goals can’t be added.

But if people use these apps for a short time, in conjunction with advice from a health professional, Tse believes the benefits are huge. Kelsey Holmes, who works in sales of running and active wear at Edmonton’s United Cycle, agrees. She’s tried several different tracking devices and apps and this year and settled on a multi-function Garmin watch along with several apps. “It’s really easy to look back on your week and see how many workouts you got in. It will give you a weekly and monthly total. And it gives you your average pace,” she says.

Having visual cues is what really helps motivate people, explains Belanger. For those of us who work at a desk and are sedentary during the day, many apps helpfully act to remind us to move. Some even include a visual clue in the form of a flower that wilts when it’s been too long without movement. Other times, some devices will show graphs, clearly displaying the number of calories versus exercise.

As well, many apps have reward systems in place. “So, it’ll be like: ‘You’ve walked as long as the London Tube,’ or something. It’s an electronic high-five, which is very powerful,” says Belanger.

While the technology is impressive, Belanger says she’s still a believer in simplicity when it comes to health statistics. One of her first experiences with tracking steps was using a simple pedometer while working at a summer camp during university – not only did she use the tracker, but the campers did, too. “We had kids fighting over who would pick up their toys. They’d be like: ‘I’ll get it. No, I’ll get it.’ They all wanted the steps,” she says, proving that even the simplest of devices can provide a world of motivation.

Alber ta Cancer Foundation

Step to it 4iiii: Located just outside of Calgary, 4iiii Innovations has developed a number of interesting sports technologies that can help you track your fitness routine. These products include heart rate monitors, a cycling speed sensor and even a device that attaches to sunglasses, delivering performance feedback right in your sightline so you’re not distracted while exercising.

Misfit Shine: This activity watch is both fashionable and highly functional. Its beauty lies in the fact that it can be used for running, walking, cycling and swimming. Paired with the Misfit App, it translates your data including steps, calorie intake and distance travelled into easy-to-understand charts.

Striiv Play: It’s a pedometer that connects to your iPhone and can be used with the Striiv iPhone app. The app provides you with challenges throughout the day and you can compare your achievements with those of your friends, increasing motivation.

MapMyRun: This app draws up a new way to track your fitness details, including distance, speed, pace, calories burned and the route travelled. Using the GPS system in your mobile device, it maps out your route, or you can upload your workout information to the app.

FitStar: It’s a fitness app that demonstrates many different types of workouts that are customized to your own physical ability.

You are able to rate workouts, and the app adjusts according to your workout capacity.

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Why I Donate • stories of giving

Spinning Together Through an annual cycling fundraiser, Rob Williams brings attention to a cause

BY JACQUELINE LOUIE

/

PHOTOGRAPHY BY CURTIS COMEAU

I

f there’s one thing that Edmonton broadcast journalist and TV personality Rob Williams wants to do, it’s bring hope to cancer patients and their loved ones. And he’s been moving towards that goal from the saddle on his bike.

Each year Williams, the co-host of weekday morning show CTV Morning Live in Edmonton, cycles 100 kilometres to raise money for the Bryan Mudryk Golf Classic, with funds benefitting the the Alberta Cancer Foundation in support of the Cross Cancer Institute.

In the nine years since he first hopped on his bike, the money Williams has raised has gone towards the purchase of new medical equipment and technologies, like a PET-MR and image-guided radiation treatment – sophisticated technologies that provide valuable insights into providing individual and precise cancer treatment.

Williams has worked in radio and television for more than two decades and is a friend and former colleague of TSN anchor Bryan Mudryk, who as a young man fought cancer twice and beat it – and then vowed to give back to the hospital that helped him heal.

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CYCLE KING: This year marks the ninth annual Williams & Mudryk 100K for the Cross bike ride.

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Why I Donate • stories of giving

“But just as importantly, it’s hope that we’re trying to an hour-and-a-half southeast of Edmonton – launched his radio career at LW1230 in raise too,” Williams continues. “It’s incredible some of Wainwright, before moving to Medicine Hat where he worked in radio and television. the work that people are doing to raise money, because He’s been with CTV in Edmonton since 2000, and has co-hosted Morning Live for the there are so many people who are dealing with cancer.” past four years.

The Williams & Mudryk 100K for the Cross is a The Bryan Mudryk Golf Classic had been running for several years when Bryan’s oldcompanion fundraising event to the Bryan Mudryk Golf er brother, Marty, decided to make his own contribution to support the cause. Marty deClassic, which was established cided to do a bike ride, pedaling

by Mudryk and his family in from Fort Saskatchewan north to “The fact that we go for a bike ride and raise a 2003. Over the past 13 years, Boyle, a distance of approximatelittle bit of money may not seem like a whole lot ly 120 kilometres. He rode on his the annual Bryan Mudryk Golf Classic and its associated in the grand scheme of things, but at least we’re own that first year, accompanied companion events have raised his wife Kristen and mother trying to do something, like so many people are, by nearly $1.5 million for the Terry Mudryk-Harbarenko, who to help the cause,” says Rob Williams.

Alberta Cancer Foundation – each drove a pilot vehicle. including $170,000 through After his ride, Marty told Wilthe Williams & Mudryk 100K for the Cross. “It’s a pretty liams that he was going to continue the ride as an annual fundraiser, and asked if Wilgood testament to the power of never giving up the fight,” liams would be interested in joining him. “I said, ‘yeah it’s not far, no problem.’ It turned says Williams, who met Mudryk when they were both out he was serious about asking me,” Williams says, “Because he came back in 2008 to working the weekend shift at CTV in Edmonton. remind me that I was going to be biking with him in June. That was the second year for Williams – who is originally from Irma, a village about the ride – it was myself, Marty and two other guys.”

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ON THE PATH: Williams and Mudryk, and their support team, during this year’s ride.

Now, about 10 to 15 riders participate in the ride through Athabasca County, which starts and finishes in Boyle. It usually takes about five hours and everyone stays together, riding as a team along with an accompanying support group. “It’s never been a race,” Williams says.

“We ride for Bryan and everybody else who has or who will be going through a cancer fight,” he says. “Now that I’ve been involved with it for this number of years, I can’t imagine not doing it, because it’s the right thing to do.”

He adds: “You always wish there was something else you could do. The fact that we go for a bike ride and raise a little bit of money may not seem like a whole lot in the grand scheme of things, but at least we’re trying to do something, like so many people are, to help the cause.”

You can find out more about the Williams & Mudryk 100K for the Cross on Facebook. Other Bryan Mudryk Golf Classic companion events include the Bryan’s Angels stair climb, in Edmonton’s river valley. Williams has done the climb at Edmonton’s Royal Glenora Club’s stairs to support Bryan’s Angels, and he regularly attends Alber ta Cancer Foundation

the golf tournament with colleagues from CTV and other media outlets. And he has helped out in other ways as well – he has served as a referee in the World’s Longest Outdoor Hockey Game, another fundraiser for the Alberta Cancer Foundation. “I knew they were looking for refs, so why not get involved in such a spectacular event that means so much to so many people?” he says. “I didn’t mind taking a 3 a.m. referee shift to help out a little bit.” He’s also reported from the event, broadcasting rink side. “We help get the word out, and we tell stories about it while it’s happening,” he says. Since 2003, the World’s Longest Outdoor Hockey Game has raised more than $3.7 million for projects supporting patients at the Cross Cancer Institute and elsewhere.

Next year will mark the bike ride’s 10th anniversary, and Williams and Mudryk want to make it by far the biggest one they’ve ever done. “We want you to bike with us,” says Williams, who dreams of inspiring others to do what they can to give back, in their own way. “You don’t have to do anything extravagant. You just have to get involved.”

To help support next year’s ride, or to participate yourself, visit albertacancer.ca/bryanmudryk or call 780-887-4936 for more information.

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My patient navigator has been a godsend. Every time I talk to her, I breathe a huge sigh of relief, she lifts the burden off my shoulders so

I can focus on healing.

Jack Sehn

•

Cancer Patient

Alberta Cancer Foundation

Patient Navigation Program To learn more visit albertahealthservices.ca/cpn.asp or contact your community cancer centre.

Donate today at albertacancer.ca

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Over 1700 riders participated in the 2015 Enbridge® Ride to Conquer Cancer® benefiting the Alberta Cancer Foundation. Over the past 7 years, the Ride has raised more than $50 million in support of all patients and families facing cancer across Alberta.

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Corporate Giving • working for a cause

A QUIET PLACE

BY ALLISON BADGER

After Shea Gifford’s cancer diagnosis, she often expressed a desire for a quiet place to sit, think and talk at the Tom Baker Cancer Centre.

Shea’s husband Fred is the owner of Nu-Way Floor Fashions, a Calgary company that has been holding a successful annual charity golf tournament for more than three decades. For three years, between 2011 and 2014, the company’s tournament raised money for the Tom Baker Cancer Centre’s patient services division.

This summer, they made Shea’s dream a reality, with the opening of a private room.

Over the course of four years, Fred says Nu-Way has donated more than $140,000 to the Tom Baker, which dedicated the quiet room in Shea’s memory. Fred describes the room as an alternative to a clinical setting, providing a comforting environment for patients. “We like to make sure the money gets put to something that’s good for the public,” he says, adding that he hopes the next patients who get cancer diagnoses can seek comfort and privacy in the room. Shea’s best friend, Rebecca Pratt, says she’s glad the company’s donations have been funnelled into the new room. “To do it for the patient services is so real, you know it’s touching people,” she says.

Shea’s daughter (and Nu-Way employee) Elisha Choquette says the entire company participates in the ROOM TO BREATHE: The quiet room provides a private area to sit, reflect annual golf tournament and the positive energy spreads and be with family, and can also be used to discuss psychosocial and palliative around to others. She says she enjoys, “working towards home care services. a goal and definitely succeeding and going over and above it.

“The quiet room is personal to us, just because that is something that mom really needed and wanted to help thrown by that, that’s not a time when you want to be exposed to a whole bunch of other people,” Choquette adds.” Even though she was people you don’t know,” he says.

Now the quiet room provides a private area to sit, reflect and be with family. The going through it herself, she wanted to see the future for room can also be used to discuss psychosocial and palliative home care services. other people being able to have that space.”

“I hope for individual patients the quiet room Dr. J. Dean Ruether, that enhancement to care,” Ruether Shea’s physician, says “The quiet room is personal to us, just provides says, adding that patient-friendly spaces donations are extremely because that is something that mom other than clinic rooms are very valuable and important. Funds provide the extra care and really needed and wanted to help other important. “I hope we see a lot of use of this room, and that it highlights the need for more of this comforts for patients people,” says Elisha Choquette, Shea kind of space,” Dr. Ruether says. He describes and their families. RuGifford’s daughter.

Shea as an incredibly brave and inspiring person, ether recalls Shea exand says he really enjoyed being involved with her pressing her discomfort with coming out of examining rooms only to see others care, as tough as it was. “She was a shining example of the strength that people have in the waiting room and feeling like all eyes were on her. within themselves that they can draw on at times when they’re facing their own crisis “How difficult is that, when you’ve been given some and yet they can do things to help other people. That was Shea right up until the very difficult or devastating news, and you’re flustered and end,” Ruether describes. “This is a part of her legacy.”

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Photo Bookstrucker

Nu-Way Floor Fashions funds a much-needed private space in the Tom Baker Cancer Centre

Top Job

EASING the BURDEN A southern Alberta physical therapist helps patients work through cancer’s physical challenges

BY LANI LUPUL

/ PHOTOGRAPHY BY ROB OLSON

W

e might be far from a cure, but thanks to advances in rehabilitation oncology, those in treatment or remission have a growing hope for a better quality of life.

Alex Grant, a physical therapist at the Jack Ady Cancer Centre in Lethbridge, was a young Ontario boy when his 16-year-old sister was diagnosed with Hodgkin’s lymphoma. At the time, the nearest hospital for chemotherapy treatment was a two-hour drive away in London. Fast-forward a few years, to when he and his wife were dating in university, and his future mother-in-law was diagnosed with breast cancer. Experiencing heavy fatigue, she was unable to do simple things like mowing the lawn. Helping in any way he could, he felt the weight of a cancer diagnosis was heavy, even outside the clinic. Intrigued at how he could help other people with similar challenges, Grant went on to complete both his bachelor and master’s degrees, finishing his studies at the University of Alberta (Calgary campus) in 2014.

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MOVING FOR HEALTH: Alex Grant provides physiotherapy options for cancer patients who are struggling with fatigue.

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Top Job Every year, the Alberta Cancer Foundation awards two students a six-week studentship at the Cross Cancer Institute in Edmonton, the Wayne and Linda Sartore Summer Studentship in Palliative Care and Supportive Oncology. Grant succeeded in the competitive application process, and moved from Calgary to Edmonton to complete the six-week term in the capital. While working with Janice Yurick in the department of rehabilitation medicine, Grant fostered his desire to learn and help as many people as he could in the future.

“That speaks to his commitment to the area of rehabilitation oncology and to implement the whole-person approach to cancer-care,” says Yurick. “He certainly embraces that. I’m sure he’ll continue to do so in the future, he’s a tremendous team player. He has the patient at the centre of all his treatment goals and aspirations.”

It was Yurick who encouraged him to apply at the Jack Ady Cancer Centre when a physical therapist position, funded by the Alberta Cancer Foundation, opened up last fall. Again, he applied and succeeded. From last December through May of this year, Grant and the team met with stakeholders, oncologists and palliative care professionals to get an idea of where the gaps in service were. More communities in Alberta are starting up specialized clinics, including places like Red Deer and Grande Prairie. Lethbridge has a dedicated clinic, meaning residents of the Chinook Region, will no longer need to travel to Calgary for specialized therapy. Or worse, do without.

Grant is working to connect with doctors and nurses in the region through a variety of presentations and meetings, and hopes to eventually start a community group that offers basic exercise for cancer survivors.

“What stood out the most when I was phoning or meeting with different groups in the area, whether it was palliative care or breast health, was how excited everybody was that the service was starting up here,” says Grant.

As of last spring, he was splitting his days between the Chinook Regional Hospital and the clinic at the Jack Ady Cancer Centre. Fortunately, both are in the same building, keeping Grant’s commute from role-to-role minimal. Since the demand for therapy supersedes the availability of practitioners, as of this fall Grant will be full-time in the clinic offering rehabilitation oncology services.

Many of his patients come to him complaining of fatigue, mobility issues or a type of swelling – some swelling occurs when a patient has had lymph nodes removed or radiation therapy (which may result in a condition called lymphedema), and some occurs due to steroid treatment “Lymphedema is chronic, unfortunately, it’s not curable. So we do a lot to manage it, and they can often manage it at home,” says Grant.

“There is a large range of impairments we can alleviate through rehab, or at least reduce the effect of. However, I do ask in all the referrals how much those things are affecting their life. Fatigue, generally, affects people’s life in a very large way.”

On a typical day, Grant arrives at the hospital around 7 a.m., following morning coffee enjoyed at home. He’ll stay on the unit at the hospital until mid-morning, when he makes his way to the Jack Ady clinic, where he devotes an hour to each client appointment. From patients still undergoing chemo, to those in palliative care, to those in remission after 10 years, Grant sees them all.

For instance, one client of Grant’s came to see him with limited movement in her arms and shoulder, due to radiation and surgery.

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She felt afraid to try anything on her own for fear of making her condition worse. This is common among Grant’s patients, who want to understand what is going on in their body and discover ways to help themselves.

Grant showed her some simple stretches she could do on her own to loosen up the scar tissue. “As she made progress, her fear and anxiety about the cancer reduced. She was very diligent, and it gave her power over what had happened to her,” says Grant. “A lot of people, when they have a cancer diagnosis, feel like there’s nothing they can do about it. You have to take the medical treatment that’s available, and hope that it works. In her case, with this rehab process, she was able to use that and fight for herself and feel responsible for the progress she made.”

The long-term goal of rehabilitation services at the Jack Ady Cancer Centre is to have a full centre with more physical therapists, occupational therapists and even a speech pathologist, if needed. While they already have a waitlist of four to five weeks, Grant remains hopeful that the difference their services make in the Lethbridge region are obvious.

“Regardless of what the situation is, I feel very satisfied, and happy,

myleapmagazine.ca

STRETCHING IT OUT: Grant’s expertise is so in demand that he spends his days split between the Jack Ady Cancer Centre and the Chinook Regional Hospital.

when a person comes back to me and says that some aspect of their life living much longer with the disease than they could have previously has been improved by the rehab we’ve done,” he says. “I’m never here hoped for.” to get rid of their cancer, but there’s still something I can do to make Grant is working to connect with doctors and nurses in the region their life better. It’s not about feeling sad or sorry for someone at any through a variety of presentations and meetings, and hopes to evenpoint. It’s about asking, ‘Is there tually start a community group that some way that I can help you’.” offers basic exercise for cancer survi“Health-care professionals in general While patients are definitely being vors. “Rehabilitation oncology is realaren’t necessarily as aware of how rehab ly a shining example of the advanced helped, there’s still a long way to go can help in the cancer journey. Up until a practice and specialized skill that is in letting the community of health practitioners, and the general public, few years ago, cancer wasn’t necessarily available at a basic level in the comknow about their work. but not at a specialist level,” the chronic disease it is now,” says physical munity, “One of the largest issues is that says Yurick. “Those with experience therapist Alex Grant. people don’t necessarily know to rein rehab oncology are few and far between in the community, so accesfer to us for the problems that they’re seeing,” says Grant. “Health-care professionals in general aren’t nec- sibility to that level of understanding and professional skill has been essarily as aware of how rehab can help in the cancer journey. Up un- limited. Not to say we don’t work with the community practitioners til a few years ago, cancer wasn’t necessarily the chronic disease it is and try to serve them – we do. But sometimes it’s beyond their scope now. Medical interventions have been vastly improved over the last 10 or experience level, so having those services closer to home for more to 20 years and now more people are moving into survivorship or Albertans is really exciting.”

Alber ta Cancer Foundation

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Research Rockstar HIGH TECH: Virology researcher Khaled Barakat is committed to discovering new cancer treatment drugs through the use of supercomputers.

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myleapmagazine.ca

The

Beat

Goes On Local cancer researcher Khaled Barakat is on the cutting edge of biomedicine

BY LISA CATTERALL

/

PHOTOS BY COOPER + O’HARA

K

haled Barakat’s friendly smile acts as a beacon at the University of Alberta’s Li Ka Shing Institute of Virology. Sitting behind his desk in the faculty of dentistry and pharmacology discussing the academic achievements that he has been a part of, his smile grows, displaying his undeniably positive and passionate nature.

“I just want to help, and discover new drugs,” he says. “We are working to find a more affordable, more controlled, safer type of treatment for cancer.”

Barakat is head of a multidisciplinary team of world-class researchers at the University of Alberta. As a child, he was a boy with lofty dreams of changing the world, who in time became a top-notch researcher on the cutting edge of cancer research. Throughout his life he has seen incredible progress in science and technology. Growing up in Egypt, he witnessed the effects of serious illness – hepatitis C plagued his neighbours and friends, but the subsequent development of specialized care to treat those infected with the disease led to his first sparks of interest in biomedicine.

Alber ta Cancer Foundation

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Research Rockstar Instead of performing this research in a traditional lab, Barakat uses a supercomputer to help researchers map the atomic structure of cancerous or healthy cells.

Using extreme computing power, he can screen potential drugs to understand their behaviour with cells. This can help predict interactions between drugs and targeted cells, and has led to more thorough research that progresses much faster than it would have in the past.

Whereas a typical pharmaceutical company would use a wet lab to screen through up to a million compounds, Barakat’s supercomputer can be used to theoretically screen billions of interactions, allowing researchers to then focus their efforts on the drugs most likely to be useful and least likely to cause serious side effects.

After completing his master’s degree, Barakat began putting together a team of specialists from the U of A to examine the potential applications of electronic modelling in cancer research. Along with a team of eight other researchers from dentistry, pharmacology, oncology, chemistry and virology, Barakat has harnessed the power of supercomputers and complex computational modelling to begin looking at fighting cancer on a molecular level. Currently, they are focused on finding minimally-invasive treatment methods. Their preliminary work has allowed them to test their theories using T-cells, a part of the human immune system that works to protect the body from infection. When a tumour begins to grow in the body, it binds with specific receptors on the T-cell, called immune checkpoints, reducing the effectiveness of the immune response. Their research has focused on injecting antibodies that reactivate the body’s T-cells, prompting them to respond to cancerous cells.

“We proved the concept, which means that [it] is working both in biological and biochemical ways. Which means, we are on the right track,” he says, adding that his team will aim to begin drug trials of these treatments by 2020.

Though this work has been promising so far, Barakat says that the use of these antibodies is extremely costly (upwards of $120,000 for four doses), and impractical over the long term. The use of these antibodies over Barakat began his academic career at Cairo University, where he graduated in the extended periods can overstimulate the immune systop of his class with a degree in electrical engineering. Following this period, he began tem, causing serious long-term side effects. Instead, the work on a master’s in engineering physics. It was during this program that he became team aims to discover a small molecule that could target aware of computational modelling technologies and their disease-fighting potential. specific tissues to fight cancer, and could be quickly removed from a patient’s system to deUsing high-powered computers, crease potential side effects.

Barakat can predict the interactions “I started out in engineering, moved Knowing the cost of his research, between objects on a molecular scale. to engineering physics and now I’m in Barakat is thankful for the $2.4 fund“I was amazed at how computers virology. I’ve just been following my ing from the Alberta Cancer Foundawere able to simulate interactions – how things moved, how they interpassion – really my passion is discovering tion and the $3 million from the Li Ka Institute. “This was all supportacted. After finishing my master’s, I drugs for cancer, or for chronic infection,” Shing ed by the AVI [Applied Virology Instistarted to think about how we could says Khaled Barakat. tute] until we got the support from do this to discover new drugs and the Alberta Cancer Foundation,” he help patients,” says Barakat.

In the past, new drugs have been discovered through biological screening, using says. “The seed fund that we received helped a lot in eschemicals in a wet laboratory. The interactions of potential new drugs with targeted tablishing the team. When we got the funds, we started cells would be studied by pharmaceutical companies to understand how these drugs to really believe that this was possible.”

One of Barakat’s longest-standing colleagues at the might fight cancer cells. But the process was often costly and time-consuming due to University of Alberta is notable virologist Dr. Michael the amount of physical work required to run the tests.

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“But of course my family is annoyed when I am playing drums all the time.”

Houghton, who co-discovered hepatitis C in 1989.

Driven by his lifelong desire to improve the lives of others, Barakat notes that Houghton, who has been working with Barakat for his musical talents were just one way for him to bring joy to others. Though he still three years, is inspired by Barakat’s attitude, resolve enjoys playing each night, he acknowledges that the real successes in his life have and knowledge. “He’s got a lot of very extraordinary come about from following his passions in life. talents. He is an outstanding computational scientist.

“I started out in engineering, moved to engineering physics and now I’m in virolHe is really pushing the boundaries of what is possiogy. I’ve just been following my passion – really my passion is discovering drugs for ble in biomedicine using supercomputers,” he says. “I cancer, or for chronic infection. Basically, I want to do something that can help a lot think he’s such an expert and such a productive force of people,” says Barakat. in that area, and he knows that he This passion is evident in the way can transform biomedicine.”

Barakat’s work has attracted at- Along with a team of eight other researchers he discusses his work, and is obvious tention from researchers around the from pharmacology, oncology, chemistry to the members of his team as well.

“On a personal level, he’s fantastic to world, including several students and virology, Barakat has harnessed work with. He’s a delight, he’s genuworking to complete masters and the power of supercomputers and inely excited about what he’s doing, post-doctoral programs. As he has complex computational modelling to just such a charming character full built the project team over the last of joy. He realizes he is at the cutseveral years, word of his experbegin looking at fighting cancer on ting edge of biomedicine by linking tise has spread quickly, piquing the a molecular level. virology with supercomputers. He’s interest of medical communities transforming us,” says Houghton. worldwide.

Barakat says his secret to success is the pursuit of passion while trying to main“When I got the chance to work with Khaled on the tain balance as best he can. “I try my best to have a balance, of course, and I advise projects he is working on, I accepted straight away,” everyone in research to have a balance in your family, and follow your passion. This says Marawan Ahmed, who had been studying in Ausis my prescription.” tralia prior to coming to the University of Alberta. “It Along with a team of eight other researchers in the fields of pharmacology, oncolis, of course, a pleasure for anyone to be a part of such ogy, chemistry and virology, Barakat has harnessed the power of supercomputers a successful team. But apart from that, what makes me and complex computational modelling to begin looking at fighting cancer on a mohappy to be his student is his own personality and charlecular level. acter,” adds master’s student Horia Jalily Hasani, who hails from Iran. “In your first impressions, in meeting him, he goes on talking and you can tell he really aims for the best.”

Barakat’s high standards and determination are evident even outside of the computer lab. When he’s not entering complex data into the university’s supercomputers, or trying to imagine new molecular interactions to further his research, Barakat finds joy in a surprisingly creative outlet – playing the darbuka, a hand-held drum he has played since his youth.

“When I was an undergrad student in engineering, my colleagues always used to rent drums for me. I used to always play at private parties with my friends too. I enjoy it very much,” he says.

Each night, after putting his children to bed, Barakat sneaks down to the basement to play the drums. This long-standing tradition allows him to unwind, though he’s quick to point out that no matter the time of day, nor the activity, he is always drawn back to his passion for research and learning.

“I am very focused on my work when I am here.

But even when I go home, I am always thinking of my work, even if I am drumming. Sometimes I will get an idea, and I will just write it down and follow-up in the morning when I come back here,” he says.

Outside of the lab, Barakat is also a loving and dedicated husband and father. Married for 13 years, the father to two daughters and one son spends much of his time outside of the lab with his family. “Having three kids in my life has taught me patience, especially when I have to drive them around,” he says with a laugh.

Alber ta Cancer Foundation

Q & A with KhAled BArAKAt Q: If you could time travel, where would you go?

A: I’d go to the future. I would love to see how medicine evolves. All of my work focuses on the future, on what is possible. Like many, I hope that cancer will disappear in the future, so I’d really like to see how treatment evolves over the next 100 years.

Q: You’ve got three young children. What advice would you give to other parents?

A: It’s hard to be a researcher, but it is extremely hard to raise a large family in the meantime. My advice to parents is to remember that your family has nothing to do with a hard day at work. I always schedule my meetings so that they don’t interfere with me picking up my kids from school, daycare or even serving as a coach for my four-year-old’s soccer team.

Q: Aside from drumming, what is your favorite pastime?

A: I don’t have a lot of free time, but I love food and if I have the time, I help my wife in preparing new food to try out. I have some special dishes that I make for my family that remind them of our Egyptian traditions. The best one is dried fava beans; in Arabic it’s called “fool.”

Q: What is the most important lesson you’ve learned in your life so far?

A: Besides being a good teacher you have to be a very good student.

Always expect to learn new things and always respect your teacher.

Listen carefully, be modest and never underestimate the abilities of your teacher, even if it’s your child – sometimes I learn new English words from my kids.

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My Leap • inspiring individual

PHOTO COURTESY DAN MCNEIL

SUPER SUPPORT: The Shannon’s Superheroes team, which finished first in fundraising in the 2014 Calgary Underwear Affair, included Shannon McNeil, centre back, her husband Dan, far right back, and their family and friends.

Making the Climb

By Allison Badger

A legacy lives on through fundraising

Close to five years ago, Dan McNeil took his first fundraising steps, raising money and participating in Calgary’s Underwear Affair. After his wife, Shannon, was diagnosed with cancer in July 2013, the event suddenly hit much closer to home, and their fundraising team was renamed “Shannon’s Superheroes.” Last year, the team consisted of about 25 friends that raised around $24,000 for the Underwear Affair’s final year in Alberta. McNeil says the event had a great atmosphere, and organizers even had Shannon stand up on stage to present her Last year, the team consisted with a medal. of about 25 friends that raised Sadly, Shannon died in Noaround $24,000 for the Underwear vember 2014. Her legacy lives on through donations from Shan- Affair’s final year in Alberta. non’s Superheroes and, in 2015, they participated in the Scotiabank Calgary Marathon, where their donations included $10,000 from her estate. McNeil estimates that the total funds raised for the Alberta Cancer Foundation over the past few years is near $30,000. “I’ve got a very 50

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great circle and a lot of supporters,” he says.

Next Christmas, McNeil and a friend plan to climb Mount Kilimanjaro, also as a fundraising effort for the Alberta Cancer Foundation. This time they’re calling it “Summits for Shannon.”

“Shannon loved to travel and she instilled a lot of that in me,” McNeil says. “It’s something she’d like me to do.” He’s currently in talks with the Alberta Cancer Foundation to determine a fundraising goal and to organize the Summits for Shannon fundraising page.

McNeil doesn’t see an end to his fundraising efforts for the Alberta Cancer Foundation, and he knows how much it can actually help through first-hand experience. “It feels great doing it in the first place because you know you’re helping a cause,” he says. myleapmagazine.ca

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