RLD ISSUE AN ONLINE WO IN R CE AN C E TH
SUMMER 2015
Safety
Net
Cancer patients are increasingly turning to online support
A GROWING CONCERN
Why farm-fresh local food is gaining ground with chefs
MYTH BUSTERS
Don’t believe the Internet hype about a cure
PLUS: Social Media and Clinical Trials; Cancer and Couples; Disease-Fighting Menu Items; and more
PM#40020055
24th Annual
TOM BAKER CANCER CENTRE Golf Classic
September 10, 2015 Elbow Springs Golf Course
HOLE-IN-ONE
PRIZES
2 VEHICLES CRUISE VACATION JEWELRY AND MORE!
Sponsorship Opportunities Still Available Be a part of Calgary’s premiere golf event in support of the Alberta Cancer Foundation
Registration Deadline : August 28, 2015 Schedule: 10:30 AM Registration Starts 12:00 PM Shotgun Start • Modified scramble format 6:30 PM Dinner Banquet Please send inquiries to Mike Miller at mike.miller@albertacancer.ca albertacancer.ca/tbccgolf2015
CONTENTS COVER STORY: Mary Beth Eckersley has taken her cancer journey online
SUMMER 2015 • VOL 6 • No. 2
SUMMER SPOTLIGHT CANCER IN AN ONLINE WORLD
18
46
DEPARTMENTS 4 OUR LEAP
A message from the Alberta Cancer Foundation
6 11 28
11 12
FOREFRONT Mastectomies and cancer; Anti-cancer foods; Barrhead gives back; Pint-sized poets pen book; Butternut squash risotto recipe; and more
NEXT GEN Young researcher is studying ‘chemo brain’
BODY MIND
Eating well at work is about planning ahead
ASK THE EXPERTS Yoga and cancer treatment; Developing bedside manner in cancer clinic staff
27 PATIENT ENGAGEMENT 42
Is a patient portal in sight?
34 WHY I DONATE
Cocktail party fundraiser honours memory of well-known cancer blogger
41
CORPORATE GIVING Mundare restauranteurs make fundraising for cancer research a family affair
50 MY LEAP
Cindy Faas finds strength and camaraderie
Alber ta Cancer Foundation
REACHING OUT ONLINE Increasing numbers of cancer patients are using blogs and social media to connect with resources
22 LIFELINES OF COMMUNICATION
Sharing knowledge and information online is becoming mainstream for health-care professionals
24 TOO GOOD TO BE TRUE
Tips for patients to navigate the tricky world of online cancer myths and misinformation
Hypnosis has medical merits as well
13 SMART EATS 14
18
FEATURES 28 LOVERS ROCK
A financial relief program allowed a Morinville couple to focus on recovery and each other
32 HOPPING THE POND
The United Kingdom has adopted patient partnerships more readily than North America
37 YOU ARE WHERE YOU EAT Is local food really any healthier for us?
42 TOP JOB
After 20 years in community oncology, Wayne Enders is getting ready to retire
46 RESEARCH ROCKSTAR
Researcher tackles complications of bone marrow transplants to bring recipients relief
summer 2015
3
Message • alberta cancer foundation
We’re Changing to Better Serve Albertans TRUSTEES Angela Boehm, Chair Calgary Gary Bugeaud Calgary Steven Dyck Lethbridge Paul Grundy Edmonton (ex-officio) Jordan Hokanson Edmonton Katie McLean Calgary John J. McDonald Edmonton Andrea McManus Calgary Brent Saik, Vice Chair Sherwood Park Sandy Slator Edmonton Greg Tisdale Calgary
It’s true: change is the only constant. At the Alberta Cancer Foundation, that saying fits us well. As we usher in a new summer season, we look back at how far we’ve come the last few years. In 2011, we added a new CEO to our roster and had a new sense of urgency to make life better for Albertans facing cancer. At the time, we already had the distinction of being the province’s largest philanthropic investor in cancer research, investing millions in research, enhanced care, prevention and screening every year. But we wanted to do more. We focused on impact investing, where decisions about what to fund are based not only on scientific or academic considerations, but also on the possible outcomes for patients and the time frame for seeing results. The goal: a shift in culture from a fundraising body to one that took an active role in achieving results by helping patients, researchers, clinicians and industry work together to do things in a new way. So we developed a framework to measure the impact of various initiatives and to understand how to re-evaluate them on an ongoing basis. We asked ourselves, would an initiative potentially benefit a large part of the population? Or would it have a big impact on a smaller number of people? How many lives and how much money could be saved if various types of cancers were detected earlier? How much would it cost the health-care system to invest in new diagnostic technologies? What are the investment opportunities that resonate with donors? How should risks, such as failure to get results, be understood and Our new patient partnership measured? This may sound like a logical way to operate, but traditionally it wasn’t happening to that level of strategy means we rely on detail in most philanthropic organizations. patients to help us underWe are already noticing results. One example is in stand how treatments work the area of personalized medicine for treating breast in real clinical practice with cancer. Through its selection process, the foundation is investing in research on biological markers of the disreal people. ease that aims to understand which treatments will work best for cancer patients with a particular biomarker. It will also provide appropriate treatment to those patients who will benefit and provide more appropriate treatments to other patients, avoiding unnecessary treatments, improving their quality of life. We are also listening to the people who know cancer best: the patients. Our new patient partnership strategy means we rely on patients to help us understand how treatments work in real clinical practice with real people. You can read more about how that might work on page 32. So yes, change can be a good thing and we will continue to embrace it as long as it means we are making life better for Albertans. We can’t wait to share that progress with you. Read the full story about our framework here: upfront.pwc.com/ trust/695-deep-impact Myka Osinchuk, CEO Alberta Cancer Foundation
4
summer 2015
Angela Boehm, Chair Alberta Cancer Foundation
myleapmagazine.ca
SUMMER 2015 VOL 6 • No. 2
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 SMITH PRODUCTION TECHNICIANS: BRENT FELZIEN, BRANDON HOOVER WEB & SYSTEMS ARCHITECT: GUNNAR BLODGETT DISTRIBUTION: KAREN REILLY CONTRIBUTING WRITERS: Robin Brunet, Sydnee Bryant, Linda E. Carlson, Lisa Catterall, Caitlin Crawshaw, Jessica Dollard, Elizabeth Hames, Robbie Jeffrey, Jacqueline Louie, Shelley Newman, Séamus Smyth CONTRIBUTING PHOTOGRAPHERS AND ILLUSTRATORS: Bookstrucker, Buffy Goodman, Claudine Lavoie Photography, Erik Mercier, Heff O’Reilley, Joey Podlubny 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 summer 2015
5
Forefront • prevent, treat, cure
Bowling for Cancer Fundraiser for cancer centre brings in ‘phenomenal total’ Every January, the Westlock Bowl bowling alley
holds a month-long fundraiser called Bowl for Cancer, where league and youth bowlers collect pledges. This year, the fundraisers brought in more than $44,000, in support of the Barrhead Community Cancer Centre, run through the Alberta Cancer Foundation. Carolyn Kohlsmith, Westlock Bowl’s owner, says she wanted to use the donations raised during the event in a local setting. Kohlsmith announced the tournament’s success at a “Pink Party,” where she also noted that the event had raised $105,000 over the last four years. “When you consider the phenomenal total, you then have to realize the overwhelming amount of dedication and effort shown by you guys,” she told the bowlers.
Garth Kohlsmith, left, is joined by Linda Knapp, Amber Williams, Donna Nelson and Carolyn Kohlsmith at the “Pink Party” announcing the Bowl for Cancer’s fundraising total.
Sticking to It University of Alberta researcher Andrew Mason proves long-contested link Andrew Mason, a researcher and
professor at the University of Alberta, held fast to a theory that many over the years have tried to disprove. His commitment has paid off – this winter, he published a paper that sets him well on his way to proving a longcontroversial point. For more than a decade, Mason has been working to identify the connection between human betaretrovirus infection (HBRV) and a liver disease called primary biliary cirrhosis (PBC). The disease is one that affects the bile duct in the liver, and Mason’s research shows that HBRV is commonly present in the cells of patients with PBC. There has also been some evidence of HBRV being linked to breast cancer. The idea that HBRV could cause a form of cancer was first introduced in the 1970s, but the technology at the time could not track the low levels it presented with, and the scientific community couldn’t agree on if it was a true infection. Research and discussion into 6
summer 2015
the links between HBRV and breast cancer stalled in the 1980s, when HIV emerged. As well, other liver disease researchers have been unable to detect HBRV and claimed no connection with PBC. “This is often how science works,” Mason says. “So we used next generation sequencing to show the virus inserted into the DNA of damaged biliary cells, and it’s hard to do that ... But what else do you do? You don’t give up.” Mason’s work has also found that patients with liver disease are responsive to anti-retroviral therapy. His research’s publication is just one step along the way to proving the link. His team is now completing a randomized controlled trial that they hope will help lead to further proof of the link. All the answers are still slow coming, but Mason’s already proved he’s a patient researcher. Funding for his research was partly provided through the Alberta Cancer Foundation, the Canadian Liver Foundation and Canadian Institutes of Health Research.
myleapmagazine.ca
Never too Young Top 5 Michael and John Brown pen a book for pancreatic cancer
Favourite foods known to combat cancer With cancer rates increasing at an alarming pace, it’s worth
taking a look at diet as a possible countermeasure. Here’s a sampling of healthy ingredients with cancer-prevention properties, and a little about what makes these “super foods” so, well, super. Soy. From soybeans to soy sauce, miso to tofu, soy contains isoflavones, which are anti-cancer compounds. Experts recommend about 50 grams per day of whole food, like edamame or dry roasted soybeans. There may be some links between soy and a reduction in breast and prostate cancers, especially if consumption starts before puberty. Garlic. Sure, they help with warding off vampires, but
pancreatic cancer, Michael and John Brown wanted to do something to make a difference. Michael, who is nine years old, decided writing a book that they could sell to raise money and awareness surrounding pancreatic cancer research would be the ticket. So he put the words together, while his 12-year-old brother John gathered the art for the book. They ended up creating Poems of the Spiritual World, a collection of Michael’s poems and John’s images of nature. The poetry is mostly about Michael’s experiences in the natural world, including time in nature and family memories. For example, in his poem “Fire is...,” Michael writes: “Fire is the warmth of the heart./It burns until the end.” The art that John gathered is mostly environmental, as well. The brothers began selling the books to neighbours and classmates around Christmas 2014. “People think it’s so good,” says John. “I was surprised that we raised so much money.” The first run of books sold out and the brothers have raised more than $2,700 in total. “It was definitely John and Michael’s initiative,” says their mother, Catherine Bell. Some of that support came from their schoolmates, who spread the word around their school. “It felt really good because it’s for the Alberta Cancer Foundation, and for people to know that we should start doing more research for pancreatic cancer,” says Michael. Recently, the family learned that their great-aunt’s pancreatic cancer is now in full metabolic remission. “She was really thrilled with the outpouring of love and support from Michael, John and so many other people,” says Catherine.
Alber ta Cancer Foundation
Cabbage. From kale to broccoli and Brussels sprouts to cauliflower, plants from the crucifer family have long been lauded for their medicinal abilities. Studies show diets rich in cruciferous vegetables are linked to a drop in the risk of certain cancers, including breast, bladder, lung and gastrointestinal, as well prostate cancers. To bring out the best in their anti-cancer potential, cruciferous vegetables should be lightly cooked and thoroughly chewed.
Source: Foods that Fight Cancer (Beliveau and Gingras, 2005)
After their Great-Aunt Ruth was diagnosed with
plants in the garlic or allium family (including leeks, shallots and chives) are thought to play a role in keeping away digestive system cancers such as esophageal, stomach and colon cancer. In China, one recent study showed that people who consumed small amounts of garlic and onions had three times a greater chance of developing stomach cancer than those who consumed more of it.
Berries. Most berries (including raspber-
ries, strawberries and blueberries) are a great source of several classes of polyphenols, which possess their own anti-cancer potential. Recent data shows that molecules found in blueberries, for example, might even slow the growth of tumours. Tomatoes. Initially discovered by the Spaniards who conquered Mexico in the 16th century, tomatoes were then brought back to Spain, and later taken to Italy. Recent findings indicate that Lycopene, a pigment and compound responsible for the tomato’s bright red hue, is tied to its anti-cancer potential. Cooking tomatoes in oil or vegetable fats maximizes their anti-cancer properties.
summer 2015
7
Seven Winning Stretches Does your desk job leave you feeling stiff and uncomfortable? Try these easy stretches to break up your day and leave you limber and ready to tackle anything your boss throws at you.
1
2 Hands Down: With your palms together and your fingers pointing down, gently pull your hands up, holding for 10 seconds. Do this stretch while standing.
Hands On: With your palms together in front of your chest and fingers pointed up, gently push your hands down and hold for 10 seconds. Do this stretch while standing.
3 Within Reach: While sitting in a chair, extend your arms while interlocking your fingers, turning your palms away from you. Hold stretch for 10-20 seconds.
4
5 Lean on Me: While standing, place your arms bent behind your head, grabbing opposite elbows. Lean from side to side, holding each stretch for 8-10 seconds.
Neck and Neck: Standing with your arms behind your back, grab your wrist with your opposite hand and pull, while tilting your head to one side. Reverse and repeat on other side of neck and wrist.
6 Up and Away: While standing with your fingers interlaced and above your head, stretch palms upward and hold for 10-15 seconds.
8
summer 2015
7 Shake, Rattle and Roll: Standing with your arms at your sides, roll your shoulders up and down, turning frontwards and then backwards. Repeat three times, holding for three to five seconds each.
myleapmagazine.ca
Butternut Squash Risotto Makes six servings. This creamy butternut squash risotto from @TheTable (MD Anderson Cancer Center) can be soothing for those with mouth sores.
INGREDIENTS: • 1 small butternut squash, peeled and chopped • 1/2 a large onion, chopped • A handful of fresh parsley, chopped (plus more for topping) • 4 to 5 cups water or low-sodium vegetable broth • 1 cup short grain risotto rice • 1/2 cup fresh pomegranate seeds (optional) • 1 Tbsp olive oil
DIRECTIONS: Heat the water or broth in a small pot. In a separate large pot, heat the oil and add butternut squash. Cook over medium heat for about seven minutes and add the chopped onion and parsley.
Cook another five minutes, lowering heat if necessary. Add a splash of water if the vegetables stick. Add the rice to the vegetables and stir well. Cook for about two or three minutes. Add water, a cup at a time, stirring well until the water is completely absorbed before adding the next cup. (You may not need to add all five cups of water.) Cook the rice until it is al dente and the squash is fully cooked. Season the mix with salt and pepper to taste. Top with pomegranate seeds and parsley. Nutritional Information (per serving): 173 calories; 2.43 grams fat; 3 grams protein; 34.6 grams carbohydrates; 2.55 grams fibre; 0 milligrams cholesterol; 13 grams sodium.
Angelic Ascent Bryan Mudryk has angels watching over him. And you’d be right. Created by one of his best friends, Bryan’s Angels was founded in 2011 by Sheyanne Levall, who rallied Mudryk supporters to raise money in his honour, and for others touched by cancer. The goal that first year was to see participants climb 200 sets of 202 steps, both ways. The Angels completed 220 sets and raised $22,000. The group, which has grown to 25 members from 11, was working to complement Mudryk’s own fundraising, for his annual golf tournament in Boyle, Alberta. For the past four years, the Angels have hosted “A Night with Bryan’s Angels” red-carpet party at the Lexus dealership in west Edmonton, and a stair-climb challenge on the bank behind Edmonton’s Royal Glenora Club, both to raise funds for the Cross Cancer Institute via the Alberta Cancer Foundation. The Angels’ events Alber ta Cancer Foundation
Photo: Claudine Lavoie Photography
You could say two-time cancer survivor
have taken off, raising nearly $300,000 in the group’s five-year lifespan. This year’s fundraising goal was $75,000, for which Bryan’s Angels set out to climb a combined 1,000 sets of stairs in exchange for pledges at the event in early June. “It started at 9 a.m. and we had 25 angels climbing,” says Levall. Mudryk also flew in for this year’s Lexus red-carpet soiree, which was also held in early June.
“It’s been so inspiring watching Bryan do everything that he’s done,” says Levall. “It truly was just an opportunity to help him reach his goal and make a difference. Once we started seeing the difference our money was making, as one of the Angels Claudine [Lavoie] said, ‘it filled a void I didn’t know I had.’ Our motto is that together we will make a difference – one step at a time.”
summer 2015
9
Making the Choice More patients are opting for full mastectomies according to a new study A new study has found that many
breast cancer patients who are eligible for lumpectomies are instead choosing to undergo full mastectomies. The study was presented at the annual meeting of the American Surgical Association and focuses on women who were diagnosed with triple-negative breast cancer. In it, the researchers found that, while lumpectomies were successful in more than 90 per cent of patients who were eligible for them after chemotherapy, an increasing number of women chose to have the entire breast removed instead. The lead researcher Mehra Golshan, director of breast surgical services at the Dana-Farber/ Brigham and Women’s Cancer Center in Boston, says in general surgeons will opt for breast-conserving options in treatment.
10
Wedded Gifts
Steps of Hope
Couple gives back from nuptials
Women’s walk a success
When Melissa Mercer married the love of her life, Cory,
Iqaluit Mayor Mary Wilman
two years ago she just knew she wanted to do it differently. And anyone who knows her well would probably expect as much. That’s why the Provost teacher decided to forgo the traditional parting favours for her guests and donate the money to the Alberta Cancer Foundation benefitting the Cross Cancer Institute instead. “She and her husband, their family members had both recently been touched with cancer. They just thought, ‘wedding favours are not as meaningful, but a gift from our guests on behalf of this great cause would be,’ ” says Lindsay Gilbert, manager of stewardship with the Alberta Cancer Foundation. Gilbert says the Alberta Cancer Foundation would like to remind people, with weddings and other special occasions coming up this summer, it is possible to donate to cancer research like Mercer did. In return, brides and grooms can net wedding web pages or place cards at their nuptials alerting guests that they have chosen to donate some of their wedding money this way. For more details about donating from your occasion via the Alberta Cancer Foundation, visit: albertacancer.ca/gift-in-honour
was among a group of 10 walkers calling itself “The Women in Action” this May, as they trekked 70 kilometres over two days and rough terrain to raise money for breast cancer. Despite scores of aching muscles and blisters, the group arrived in Igloolik on the evening of May 5 – a day earlier than Mayor Mary Wilman they expected. The guides travelling with the women had estimated it would take the participants five to seven days to complete the snowy trek, the group’s third bi-annual event. Commissioner of Nunavut Edna Elias led the group, which had to contend with knee-high and blowing snow, making the trek slow going at times. This is the third Walk of Hope with fundraising benefitting the Cross Cancer Institute via the Alberta Cancer Foundation. Past walks have raised more than $180,000 for breast cancer research all told, while this year’s walk has raised $50,000. The goal for 2015 is $100,000. To donate, or for more information, visit: albertacancer.ca/ womeninaction2015
summer 2015
myleapmagazine.ca
Next Gen • supporting young minds
LIKE MOTHER, LIKE DAUGHTER Second-generation neuroscience researcher hopes to find answers for ‘chemo brain’ phenomenon BY SHELLEY WILLIAMSON Kovalchuk did not have to think long or hard about her own career path. The daughter of Drs. Olga and Igor Kovalchuk, respected neuroscience researchers and professors in their own right at the University of Lethbridge, Anna comes by her love of science and cancer research honestly. (Ukraine-born Olga was featured in the summer 2010 issue of Leap, for her work studying Chernobyl and radiation).“I have been exposed to quite a lot of cancer research and have heard my mom talking about her work. I was also exposed to a lot of other supervisors who were interested in this. It just made me believe that this is what I would like to do,” says Anna, who is working under Dr. Bryan Kolb at the U of L for her master’s project, which examines the effects of chemotherapy on the brains of mice. Now it’s the 23-year-old’s time to take the spotlight, as the 2014 Cyril Kay studentship recipient. Established in 2003, the studentship created in Dr. Cyril M. Kay’s name via the Alberta Cancer Foundation has long been given to top graduate students with bright futures in QUICK STUDY: Cyril M. Kay studentship recipient Anna Kovalchuk inherited her keen cancer research. interest in research and oncology from her “These are exceptional students who are interested parents, who are both university professors. in medical research, in this case related to cancer,” says Kay, who helped establish the Alberta Cancer Board and is a Professor Emeritus of biochemistry at the University of Alberta. “The projects run through the differences between the two drugs and there were also differences between the entire continuum of cancer research, all the way from sexes as to what was going on at the molecular level.” studying molecular mechanisms to prevention, detecAnna says she hopes her work will help us understand why people show negative side effects from chemotherapy. “We wanted tion and diagnosis, treatto see what kind of genes are being expressed ment and palliation. “I am personally very grateful that the and what pathways they belong to, so that They are judged by an Alberta Cancer Foundation created this when we see what’s going on at that level we expert panel, and these are the number one award – all of these people are going to make can understand what’s going on with the wonderful contributions to the fight against ‘chemo brain phenomenon’ and why people students.” are experiencing deficits in attention. With Anna says her work on cancer,” says Dr. Cyril M. Kay. this understanding, we will be able to prevent the $55,000 studentship, which she began in May 2014, is a continuation of people from having these post-chemotherapy effects.” After completing her master’s degree, Anna hopes to follow in her folks’ footsteps her previous studies under Kolb, as an undergraduate, on the effects of radiation on mice. “It seemed like the with a PhD from the U of L, which she hopes to complement with a medical degree from the University of Calgary. “It’s close to home and it’s a nice research university,” logical step to take next,” she explains. Her findings have already shown gains. “We wanted she explains. In the meantime, she will use the $1,500 stipend from her award to to see what effects mice would experience after being attend a conference in New Orleans, and complete her master’s, of course. The importance of the award, and having it in his name, is not lost on Kay. “Very treated with these two chemotherapy agents. One of them (MMC, or Mitomycin C) led to sex and brain- often grants are not easy to get, and it’s important to have this kind of money for supregion specific changes in the gene expression of these port,” he says. “This is the next generation of researchers. I am personally very gratemice. We were looking at the hippocampus and their ful that the Alberta Cancer Foundation created this award – all of these people are pre-frontal cortexes and we are seeing that there were going to make wonderful contributions to the fight against cancer.” Alber ta Cancer Foundation
summer 2015
11
Photo courtesy the University of Lethbridge
With two neuroscientists as parents, Anna
Body Mind • making positive connections
Altered State With medical merits from nausea reduction to pain relief, hypnosis is not just a stage gimmick BY LINDA E. CARLSON
When you think about hypnosis, the image that arises for many people is the stage hypnotist: a shady showman in a black cape staring deeply into your eyes or swinging a pendulum to get you to do embarrassing things you normally wouldn’t do. The elements of this kind of gimmick typically include going into a trance and losing control over your actions, being at the mercy of the all-powerful hypnotist and perhaps having no memory of it afterwards. In contrast to this, medical hypnosis is actually pretty mundane. It’s defined as “a natural state of aroused, attentive focal concentration coupled with a relative suspension of peripheral awareness aimed at achieving symptom relief.” What does this mean? “Aroused, attentive focus” means you are wide awake and concentrating very hard on one object of awareness – often the words of the hypnotist. This is coupled with “a suspension of peripheral awareness,” which means being absorbed and not noticing much of what else is going on around you – like watching a good show on TV. The reason for this is to “achieve symptom control,” or in other words, to feel better. It’s not just for fun; there is a purpose and an objective. Another definition describes medical hypnosis as “an agreement between a person designated as the hypnotist and a person designated as the client to participate in a psychotherapeutic technique based on the hypnotist providing suggestions for changes in sensation, perception, cognition, affect, mood or behaviour.” That’s basically what happens in a hypnosis session: the hypnotist uses various methods of inducing attentive focal concentration, then makes suggestions that the client will, for example, feel less or no pain, sleep better, quit smoking or reduce nausea. The idea is to induce a highly relaxed state in which the client’s conscious and unconscious mind is open to therapeutic suggestion. However, the exact mechanism by which hypnosis works is still unknown. One thing’s for sure: the hypnotist is not controlling your mind and can’t make you do something you don’t already want to do. Indeed, there is now ample evidence that hypnosis works to help control some cancer symptoms. A review that explored studies surrounding hypnosis and 12
summer 2015
cancer patients published between 1999 and 2006 concluded that hypnosis is an effective means of reducing pain and anxiety without side effects, while allowing patients to play an active role in their comfort and well-being. A more recent review in 2013 summarized the use of hypnotherapy in cancer prevention, treatment and survivorship. It concluded that there is evidence that hypnosis can be helpful in managing distress in women undergoing invasive diagnostic tests for breast cancer, and for other diagnostic procedures such as lumbar puncture or bone marrow aspiration, particularly in children. During cancer treatment, one area with the most evidence for hypnosis efficacy is for managing nausea and vomiting, side effects of chemotherapy drugs. Preliminary studies have also investigated its efficacy in treating fatigue related to radiation therapy, hot flashes and other menopausal symptoms in breast cancer survivors, showing potential for benefit. In general, the evidence for using hypnosis for the treatment of pain and nausea in cancer care is strong, but other areas require further trials. If you are interested in trying hypnosis for any of these symptoms, contact the psychosocial and supportive care departments at the Tom Baker Cancer Centre or Cross Cancer Institute, as some of the counsellors are trained in hypnosis for symptom management. Be sure any therapist you see is a member of the Canadian Federation of Clinical Hypnosis – Alberta Society (clinicalhypnosis.ca/ab_index.html), which guarantees they have the proper training. myleapmagazine.ca
Smart Eats • food for life
On the Move Eating well at work is a matter of planning ahead and choosing the right foods BY KAROL SEKULIC
Did you know that employees spend about 60 per cent of their waking hours at work and eat at least one meal while on shift? This means that making healthy food and drink choices at work can have an impact on health and energy levels. Use the tips below to help you be fuelled and energized for your workday, whether you pack your meals from home or not. As a rule of thumb at each meal, aim to have three to four of the food groups from the website, Eating Well With Canada’s Food Guide (hc-sc.gc.ca/fn-an/food-guide-aliment/index-eng.php). Break the Fast Start your workday with a healthy meal to help boost your nutrient intake, energy and memory. This can also help you manage your weight and possibly improve your eating habits during your shift. If you don’t have an appetite when you first wake up, try starting with one or two foods at a time. Here are examples: • Small whole grain muffin, barley, quinoa or oat porridge • Lower fat cheese, milk or plain yogurt • Hard-boiled egg or nut butter • Apple, banana or carrots Lunch, Anyone? Try one of these new ideas to keep things exciting and healthy: • Lunch Bowl: Brown rice or quinoa, red peppers, avocado, salsa, cheese and black beans or chicken are always great options. • Snazzy Salad: Arugula, strawberries, pears, goat cheese and almonds or pecans. Drizzle with balsamic dressing. Add a whole grain bun and voila! • This and That: Greek yogurt, whole grain crackers, hard-boiled egg and a piece of fruit can spice up lunchtime. Snack Smart If you choose to snack throughout the workday, try to opt for: • Whole grain crackers • Raw vegetables • Small can of tuna Alber ta Cancer Foundation
Dinner is Served If eating out with co-workers, choose restaurants offering healthy choices. Once there, try to: • Reduce the serving size by asking for a half-portion, share with others or save the leftovers for another meal. • Choose dishes that are steamed, grilled or roasted. • Order your sauces and dressings on the side and use only small amounts of these. • Order vegetables or a salad as a side dish. Rethink That Drink Drinks with added sugar, such as coffee with syrups or regular pop, add extra calories and do not help you feel full. Here are some tips for choosing healthy drinks: • Drink water throughout the day: Bring a water bottle to work to stay hydrated throughout the workday. • Lighten up your coffee or tea: Reduce the cream and sugar you add to your coffee or tea. Consider switching to lower fat milk. • Shrink your drink: If you have beverages that contain sugar or fat (like soft drinks, specialty coffees, sports drinks or energy drinks), choose a smaller size. • Meet your fluid needs: Get the recommended nine to 12 cups (two to three litres) for adults of fluids per day. Water, milk, tea and coffee count towards this. Remember that adults should limit caffeine to no more than 400 milligrams per day. This is equal to two to three cups of coffee (550-750 millilitres) of fluid per day. Remember that making healthy choices at meal and break times is important to staying fuelled throughout your shift. To promote healthy eating at work with your co-workers, participate in a fun fourweek free healthy eating challenge! Visit albertahealthservices.ca and enter healthy eating challenge toolkit in the search box to find everything you need to run a healthy eating challenge at work. Karol Sekulic is a registered dietitian with Alberta Health Services who has expertise and interest in the areas of weight management and nutrition communications.
summer 2015
13
Ask the Expert • a resource for you
KNOWLEDGE IS POWER We brought your questions to medical and fitness experts about staffing a cancer centre, the benefits of core exercise and practising yoga during cancer treatment BY LYNDSIE BOURGON AND SHELLEY WILLIAMSON
The nature of work in a cancer centre must be so difficult. How do you find staff members who are passionate about helping others?
Leap spoke to Dr. Peter Craighead, the Tom Baker Cancer Centre’s medical director and the department head of oncology for Calgary, about what makes the best cancer centre staffers. “To care for cancer patients is truly a blessing and a privilege, and we get so much more from this experience than our patients,” Craighead says. “Yet it takes special people to ensure that patients are heard and cared for, which should drive us to consider how to recruit people, and how to develop them.” Craighead says it comes down to keeping with a culture of giving back, and that he likes to refer to Nelson Mandela’s concept of “Ubuntu” whenever there’s a question about what to look for in staff: “A person with Ubuntu is open and available to others, affirming of others, does not feel threatened that others are able and good, based from a proper self-assurance that comes from knowing that he or she belongs in a greater whole and is diminished when others are humiliated or diminished, when others are tortured or oppressed.” – Nelson Mandela “Our major role as cancer centres is to instill hope in our patients and families,” adds Craighead, noting most patients want to be heard, understood, and cared for, especially when the outcome is not good. “Potential staff members who do not demonstrate this understanding should not be considered for employment,” he says. As a rule, he and his colleagues look for team players – as cancer care is, at best, collaborative. “Our ability to develop people who are effective within teams is a predictor of whether we will succeed in our mandate to provide integrated care or not,” he explains. “Potential staff who won’t work well within teams should not be considered.” Once you have the right types of players in place, says Craighead, it’s important as administrators “to nurture people who want to give back, as leaders we have to invest so that those being helped feel valued,” he says. “It takes a concerted effort on our part as leaders to develop the right skills in our people, and to remind people that in return we expect them to give back to patients, people around them, and to their families.” 14
summer 2015
What are the benefits of doing coreonly exercises, and what should I start with? Your core consists of pelvic floor muscles, abdominal muscles, the diaphragm, deeper-layer back muscles and even the muscles that run along your spine to help it keep upright. According to Patricia Maybury, the owner of Calgary’s Fitness Table core strength studio, strengthening your core leads to lots of benefits, like: • Flat, strong low abs (and the ability to pull them in, not just zip them into your jeans) • Decreased lower back pain • Better posture, which improves your energy and mood (and even makes you appear taller and more confident) myleapmagazine.ca
• Improved mobility in day-to-day activities and in your athletic performance Maybury says breathing is where core strength begins: “Lying down on your back, with one hand on your chest, and one hand on your belly, take a deep breath in. Notice where the breath was directed? If it went into your chest, then the diaphragm got stuck and wouldn’t let the breath move down,” she says. “Try again and see if you can breathe into your bottom hand instead of the top one.” She continues: “On the exhale, try to make your waist long and small, using your transverse abdominis wrapping like a corset. Once you’ve mastered that lying down, try doing it in different positions without the feedback from your hands. Try it during an activity like walking or golfing, and see if you can still activate your diaphragm while you are in motion.”
I have cancer and am in treatment. Can I continue my yoga practise?
Susan Bocchinfuso is a physical therapist and registered yoga teacher at Oncology Rehab Calgary. She lauds yoga as a great tool in helping manage cancer treatment side effects, but suggests proceeding with caution to avoid injury or further discomfort. “The ancient Indian practise of meditation, breath work and poses has physical and mental benefits that help with weak or stiff muscles, decrease stress and increase your general sense of well-being,” she says. “But it can also be a great way to injure yourself if you are not careful.” Knees, wrists and the spine are three of the most common areas prone to injury in the general population. “Almost everyone has experienced back pain of some type at one time or another,” Bocchinfuso says. “Protecting your back in yoga class after cancer treatments should become your number one priority. Hormone treatments can make your vertebrae weaker and, in some cases, more prone to fractures.” To that end, she advises yoga practisers keep a straight back during bends, for starters. You may not be able to bend as far, but “you will be doing your back a world of good.” To avoid injury to wrists, Boccinfuso suggests displacing weight evenly over your hand, and avoid “dumping” onto the wrist with moves like downward dog. Ideally the thumb side of your wrist should have more weight than the pinky side. “If you are experiencing pain and tingling in your fingers after chemotherapy treatments you need to pay special attention to your form,” Bocchinfuso explains. “Altered sensation will make it harder for you to figure out proper wrist alignment.” Try this to ensure you are in the right position: when you are in downward dog you should be able to lift the pinky side of your hand off the mat. Since doing yoga is one of the few times in our lives we reach our arms above our head, it’s important to stretch your shoulders with caution, especially if you have had radiation therapy for breast cancer, says Bocchinfuso. “Although yoga helps lengthen tight muscles, forcing irradiated tissue to stretch too far too fast can cause micro-trauma to the area, which will impede healing.”
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. Alber ta Cancer Foundation
summer 2015
15
LET’S DRAG CANCER THROUGH THE MUD!
Join us on Saturday, August 15, 2015 at Sunridge Ski Area for the 3rd annual Down & Dirty 5KM Obstacle Course benefiting the Alberta Cancer Foundation. Challenge yourself (and your laundry detergent) by registering online today at albertacancer.ca/downanddirty2015. To learn about volunteer opportunities please email info@downanddirtyobstaclecourse.com.
7TH ANNUAL
5KM RUN or 3.5 KM WALK LOUISE MCKINNEY RIVERFRONT PARK SATURDAY, SEPTEMBER 12, 2015 Join us for the 7th Annual Climb of Hope Run. All proceeds will benefit the Alberta Cancer Foundation and help make life better for patients and their families at the Cross Cancer Institute. REGISTRATION · VOLUNTEERING · DONATE
CLIMBOFHOPERUN.CA
SPECIAL REPORT:
CANCER IN AN ONLINE WORLD
I
n sickness and in health, the Internet has changed communication. Cancer patients, doctors and researchers are forging connections online that break boundaries through social media, blogging and online forums. This issue of Leap considers how the Internet is changing cancer diagnosis, care and treatment on all steps of the cancer journey.
22
18
Alber ta Cancer Foundation
REACHING OUT ONLINE Increasing numbers of cancer patients are turning to blogs, social media and online support groups for help
24
LIFELINES OF COMMUNICATION Medical and fitness professionals are taking their expertise online
TOO GOOD TO BE TRUE The Internet is full of information about cancer, potential treatments and so-called miracle cures. Here’s how patients can navigate the tricky world of myths and misinformation
summer 2015
17
CANCER in an online world
Increasing numbers of cancer patients are turning to blogs, social media and online support groups for help BY CAITLIN CRAWSHAW
/
PHOTOGRAPHY BY BRIAN BOOKSTRUCKER
T
here were times when chemotherapy made Mary Beth Eckersley too sick to read or watch TV. The sheer exhaustion made it impossible to focus for more than minutes at a time. But even at her worst, she could blog. “I’d do a couple of lines, then stop,” she says. “It fit what I could do at the time.” For Eckersley, this was a godsend. She’d been diagnosed with stage three breast cancer in 2012 – her second bout with cancer, as she’d survived cervical cancer 30 years earlier. But back then, her treatment had only consisted of minor surgery. This time, she faced multiple invasive surgeries and chemo. “This was a whole other ball game,” she says.
18
summer 2015
myleapmagazine.ca
FINDING HER VOICE: When she was diagnosed with cancer for a second time in 2012, Calgarian Mary Beth Eckersley turned to the Internet and started the blog, I Will Fight for Me, to pen her journey.
Alber ta Cancer Foundation
summer 2015
19
CANCER in an online world
Like many cancer patients, Eckersley started a share their deepest feelings about their cancer. Those who expressed their feelings blog to write about her experience. “I decided I’d in writing felt a reduction in their cancer symptoms. A 2008 study by Georgetown make the experience as positive as possible, and University researchers showed patients with leukemia and lymphoma felt much put as much of it in the light as I could,” she says. better after treatments if they engaged in expressive writing immediately before. “It’s the darkness that scares us.” She also hoped it Of course, many people – Eckersley included – don’t want to write just for might help other patients at earlier stages of their themselves. The good news is that sharing writing publicly may have some specific journey. So, for the last three years, she’s logged on to health benefits. A 2013 study of troubled youth by researchers at the University her blog – I Will Fight For Me of Haifa, in Israel, found that (iwillfightforme.blogspot. “I decided I’d make the experience as positive as blogging was more effective ca) – to share everything than journalling for boosting possible, and put as much of it in the light as from medical treatments, to self-esteem and lessening I could,” says Mary Beth Eckersley. participating in the Enbridge social anxiety. Ride to Conquer Cancer, But it’s not always easy to to her recent decision to become a certified Aqua Fit put yourself out there. For Eckersley, it was a bit nerve-wracking to post her first instructor. blog entry. “I think I put up the first one at 3 a.m. and just let it go,” she says. “But I Research has proven that there are many found it really cathartic to type it and put it out there. It made it all less scary.” therapeutic benefits to expressive writing. A regular Eckersley’s initial worries about privacy faded as she went through treatment. writing practice can reduce stress, improve memory Now, she was encountering an endless stream of doctors and nurses who knew and sleep patterns, boost immune cell activity and all about her. After a while, she stopped feeling self-conscious about exposing her even speed healing after surgery. For cancer patients, chest in an exam room – or sharing her experience online. “You think your life is putting pen to paper — or fingers to keyboard — can private until you get cancer,” she says. ease the miseries of treatment. In a 2014 study from Like Eckersley, Mike Lang went online for support after being diagnosed with the University of Texas, patients with kidney cancer Hodgkin’s lymphoma a few years ago. At the time, he was an avid outdoorsman who were asked to either to write about neutral topics or worked as a ski patroller and led adventure trips with his wife, Bonnie. He was also 20
summer 2015
myleapmagazine.ca
only 25. Baffled by the diagnosis, Mike went online to find other young cancer patients: “I just really wanted to talk to someone my own age,” he says. At the time there weren’t any online support groups for young adults with cancer. Fortunately, Mike was connected to seven other survivors his age through an organization called Young Adult Cancer Canada (youngadultcancer.ca), which he found while surfing the web. The peer support helped Mike get through treatment, so when he and his wife decided to organize an adventure trip for survivors, they invited his online friends. In his words, the trip “was me trying to figure out what the hell happened.” Since diagnosis, he’d become increasingly bitter and angry, and needed to find a way to reconnect with the positive person he’d been before. So he and Bonnie organized an eight-day kayaking trip along Oregon’s Owyhee River, similar to the trips they’d organized for at-risk youth before the diagnosis. While preparing for the trip, Mike spoke with the other survivors coming along and was amazed by what they told him: “I thought, man, these stories are incredible – we should share them somehow.” Though he had no experience with film, Mike decided to capture footage from the trip and make a documentary about cancer survivorship: Wrong Way to Hope: An Inspiring Story of Young Adults and Cancer. The film earned the CIBC Hope Award in 2011 and has been screened more than 300 times in seven countries. It also led Mike to produce two more films about cancer survivorship: Ebb and Flow: Storytelling for Cancer Survivors and The Valleys. “It’s my favourite thing to do,” he says. Since then, Mike and Bonnie have continued to organize adventure tours for young cancer survivors through their company, Survive and Thrive Cancer Programs (survivethrive.org). Many of their clients reach out to them online. On top of this, Mike has spent the last couple of years working towards a master’s degree in health services research. For his thesis project, he studied the effectiveness of an online chat group called Cancer Chat Canada, which runs weekly discussions guided by a professional facilitator. Mike’s work found that the online program had many of the same benefits as a face-to-face group – decreasing anxiety and loneliness, in particular. While the online realm has been a supporting player in both Mike’s cancer journey and resulting career shift, he sees its limitations. “This medium is a double-edged sword. There’s all this potential for positive things, and the potential for negative things too,” he says. Case in point: online discussion boards, which can contain bad information or trolls. And when it comes to privacy, Mike thinks young survivors should consider the risks – particularly, the potential harm to future employment opportunities. He recommends using support groups that allow users to be anonymous, like Cancer Chat Canada (cancerchatcanada.ca). Bloggers can use a service Alber ta Cancer Foundation
called Caring Bridge (caringbridge.org) which allows people with health issues to blog about their health journeys, without worrying about it being read by anyone other than their loved ones. Many of us assume no one will be interested in our tiny corner of cyberspace – in fact, that’s what the couple assumed when Bonnie started a blog to keep friends and family updated about Mike’s treatment. “We didn’t think anyone but our families would read the blog,” he says. “We were surprised over the years that all of a sudden there were thousands of people reading it.”
TweeTing unTil The end Until a few weeks before her death, Lisa Bonchek Adams tweeted about flowers, living life to the fullest and the details of her terminal breast cancer. She had more than 15,000 followers and had tweeted 176,000 times when she died at 45. Since starting her Twitter account in 2009, the American mother of three shared the intimate details of her life with cancer, including her medical treatments, prognoses, thoughts on life and dying, and preparing her children for her death. Her candour attracted plenty of fans, but it didn’t sit well with two newspaper journalists — Emma Gilbey Keller and Bill Keller — who questioned her choice to share her dying days so publicly. “Should there be boundaries in this kind of experience?”asked Emma in The Guardian, in 2014. “Is there such a thing as TMI? Are her tweets a grim equivalent of deathbed selfies, one step further than funeral selfies?” Social media has an indelible effect on public conversations around health care, says University of Alberta health law professor Timothy Caulfield: “It’s changed how people talk about illness, how health information is disseminated, and I think it’s having an impact on health policy debates.” More patients like Adams are sharing their stories online — but also fundraising for treatments and reaching out to one another. But there are plenty of downsides, says Caulfield. Some patients are going online to crowdsource their diagnoses or find others who share their misguided ideas about health (case in point: the anti-vaccination movement). While the ethics of dying online are murky, there may be legal risks associated with social media storytelling, says Caulfield: “Any time you tweet about other people, there could be a danger of crossing a line and talking about people inappropriately,” he says. “In the extreme, that could raise legal issues.” But what worries him more is how other patients perceive the stories they find. Some may think treatments are more effective than they really are, based on a few patients’ experiences, for instance. “People should remember these are stories and anecdotes,” says Caulfield. “They can still be very powerful and useful, but they should consider them one person’s experiences.” And anyone — whether they’re tweeting on their deathbed or blogging about Daffodil Days – should exercise common sense before they post anything online. “If you’re considering doing it, remember that once it’s out there, it’s out there. And consider how it might be useful to others.”
summer 2015
21
CANCER in an online world
Lifelines of
Communication Medical and fitness professionals are taking their expertise online
BY SHELLEY NEWMAN
E
ven if you don’t know social media lingo, you should know a heck of vides presentations and training to help other oncologists incorporate social media into their practices. “Obviously, a lot of people are talking about breast cancer online on any given day. On Monday, March 23, the Breast Cancer Social Media (#BCSM) Twitter chat it’s not going to be for everybody,” she says. “But, there’s had three million impressions, 734 tweets and 61 participants. Between 50 and 70 people a growing number who are seeing the importance of it typically participate in the weekly chats, and are making time to use social “Social media allows access to so which have seen a growing, global audience media as a way to communicate since starting in 2011. many people worldwide, and that’s and collaborate.” Dr. Deanna Attai, assistant clinical proShe’s seen incredible global colpositive for young adult cancer laboration happen in real time. “I was fessor of surgery at the University of Calat a conference in San Francisco and ifornia, Los Angeles and president of the survivors,” says Lisa Belanger. tweets from that event were transAmerican Society of Breast Surgeons, is a long-time co-moderator of #BCSM and has seen the growth of this online breast cancer lated into five or six languages, so people from around the group. “BCSM is intended to provide guidance, education and support for people,” she globe were able to learn from the information,” Attai says. explains. “We’ve had such a positive response and have witnessed the development of a “We have an obligation to share knowledge – it shouldn’t just be kept in the confines of a conference room.” real community.” Sharing knowledge and information is also a fundamenWhile Attai wasn’t initially involved with the chats, she has brought a medical perspective to the discussions since. “There are times when a physician’s voice is needed,” tal goal of the Alberta Prostate Cancer Research Initiative, she says. “When people are discussing topics, we have the chance to correct myths and and this led them to create a website that provides resourcmisperceptions in real time. We stick to the science as much as we can and encourage es for patients, clinicians, scientists, partners and donors. “Our goal is to create a dynamic website that will evolve people to speak to their own doctors if they need specific information.” In addition to her work with patients and colleagues through #BCSM, Attai also pro- over time,” says Catalina Vasquez, director of the Alberta
22
summer 2015
myleapmagazine.ca
Power of ConneCtion
Prostate Cancer Research Initiative (APCaRI). “Since we had such a comprehensive vision, we launched the site in two phases: first in 2013 and then the complete site was launched this February.” So far, it’s been successful, with more than 1,000 people worldwide visiting since the full launch in early 2015. The APCaRI team has also seen an increase in its professional connections since 2013. “We’ve been contacted by scientists from around the world, including China, Germany and the United States,” Vasquez explains. “Now we’re collaborating on research projects with people we wouldn’t have connected with otherwise.” From a patient perspective, the APCaRI website offers information on studies, trials and testing to links on prostate cancer networks and support groups. “We’ve also begun to develop interactivity through our blog,” says Vasquez. “The site is a starting point, and we want to keep building connections through social media so people can continue to learn about prostate cancer and the great research being done in Alberta, while also connecting with each other.” Alber ta Cancer Foundation
Dr. Lisa Belanger, founder of Knight’s Cabin Cancer Retreat, has also observed the power of social media in helping cancer patients and survivors. As part of her PhD, Belanger connected with young adult cancer survivors and discovered how ideally suited this group is for social media. “Social media allows access to so many people worldwide, and that’s positive for young adult cancer survivors,” says Belanger. “They have unique questions about things like whether or not they should tell their future partners or employers they’ve had cancer. When you can create relationships and talk about these topics through social media, it becomes empowering to realize that other people are going through the same thing.” In her role with Knight’s Cabin, Belanger works with people who are, on average, 50 years old. For this group, she’s observed Facebook is a good connecting and motivating tool. “We create private Facebook groups for people who participate in the retreats, and that’s where the interactions happen,” she explains. “When people provide updates and receive positive encouragement from others for their accomplishments, it can be a powerful way to connect.” Also an exercise physiologist, Belanger uses social media to remind people about the importance of exercise for your overall health – even when you have cancer. “Through social media, people might learn about someone with the same type of cancer who competed in a dragon boat race, for example, and that information might encourage them to become more active,” she explains. “Seeing other people do something makes it more normal and can even encourage us to make a change. It’s so interesting to consider the positive personal changes that can come from an online cancer community.”
summer 2015
23
CANCER in an online world
24
summer 2015
myleapmagazine.ca
Too Good TO BE TRUE
The Internet is full of information about cancer, potential treatments and so-called miracle cures. Here’s how patients can navigate the tricky world of myths and misinformation about cancer online BY SYDNEE BRYANT
I
t happens every day: cancer patients searching for answers online stumble across several websites promoting a previously unknown treatment for cancer. The patients get excited and bring the treatment to their doctor’s attention, only to have their hopes dashed when they find out the so-called miracle cure hasn’t been scientifically proven. Dr. John Mackey, director of the Clinical Trial Unit at the Cross Cancer Institute and professor of oncology at the University of Alberta, knows all too well what can happen when patients get overly enthusiastic about incomplete information on cancer treatments. He and his team recently published a paper about the chemical DCA, and how clinical trial work must be done before how it works in cancer patients can be understood. For decades, DCA has been used in patients with mitochondrial disease, which means they are born with a problem in the way they generate energy in their cells. DCA has been found to be helpful in children with this condition, but another U of A scientist has discovered that DCA also has some anti-cancer effects when tested in a laboratory. “At that time, at the U of A and the Cross Cancer Institute, clinical trials of DCA were studied in patients with incurable cancer. These were early stage trials to determine how safe this drug was. But they did not compare DCA to standard treatment,” says Mackey. “It’s too early to say whether DCA will become a cancer drug. Despite the lack of information about how well it works in cancer, many patients
Alber ta Cancer Foundation
turned to the Internet to learn more about DCA and some patients will even purchase DCA online and take it, hoping it will treat their cancers.” In fact, there are websites singing the praises of DCA with no real information to back it up. Of course, many of those websites are also selling DCA as a treatment for cancer. The chemical, which forms when vinegar and bleach are mixed together, isn’t illegal. But is it effective in treating cancer? That hasn’t been proven. The small glimmer of potential it presents is enough to get some desperate patients to purchase it online. “It is difficult to know how much this is happening because it is not a drug sold in a pharmacy. It’s very difficult to know how many patients may be taking DCA and what effects it is having,” says Mackey. “The U of A has completed two clinical trials on DCA and both are published. The studies have shown what an appropriate dose to study further research would be. They’ve given us the proper dose to use in patients with cancer to study in further trial.”
summer 2015
25
CANCER in an online world
Mackey recommends that patients look for information on the National Cancer There is unlimited information online about science, cancer and various so-called treatments for disease. Institute’s website, cancer.gov. The website describes different cancers for both a There’s also a wealth of reliable, scientifically-backed layperson and a professional, and the information is written with the patient or paresearch about cancer, clinical trials and proven treat- tient’s family in mind. It’s updated when there are advances in things like cancer rements. So how are patients supposed to know the dif- search or palliative care, but only if the information passes the website committee’s ference between a website with solid information and approval. “It’s great information, it’s up-to-date and there are world-class people who put a lot of effort into making sure that information is available,” says Mackey. one selling snake oil? Patients usually go online for information about “It freely admits that we don’t cure all cancer patients and that, unfortunately for their cancer in the time between their diagnosis and too many of our patients, we don’t have effective treatments. The website also points first clinic visit, says Mackey. “It’s usually triggered people to clinical trials. It’s ideally suited for people who want to know about their when they are first diagnosed. In that gap period, we cancer and state-of-the-art treatment; it explains types of cancer, grades, treatments, often see patients who don’t have all the information at side effects and clinical trials.” For Albertans, Dr. Mackey recommends another good resource: albertacancertheir fingertips turn to the Internet,” he says. Still, this reaction to a diagnosis isn’t new in the last clincialtrials.ca, a website that launched in the fall of 2014. It lists all of the can20 years. “Before the Internet, there were books and cer clinical trials currently happening in Alberta, and is intended for patients and scientific literature,” says Mackey. “At the end of the researchers. Caulfield says that the question of whether the Internet hurts more than it helps is day, the Internet is a wonderful tool, but a tool that is used for good or for evil. It’s difficult if you’re not an a tough one. “I love the fact that there is so much good health information available expert in the field to know if it’s a reliable source with now. With open access, it’s becoming so you can access really good science informagood information. There’s good stuff out there and bad tion,” says Caulfield. “Globally, I’m glad that these options are available to patients and to the public. And, I think in the long term, it will be a good thing. However, the stuff out there.” Now it’s easier than ever for misinformation and downsides are significant and they can’t be ignored. But you can think of strategies to myths to spread much faster than the truth. “The mitigate those potential harms.” The number one strategy Caulfield suggests while researching online is skeptiInternet allows these things to take flight much more quickly. I think that is a big part of the story,” says Tim- cism. “I think a healthy dose of skepticism should always be your starting point; that othy Caulfield, an ethicist, author and professor at the should be how you engage the Internet, in general,” he says. “You want to look for U of A. “The Internet amplifies people’s cognitive bias- independent sources of information. Often that is hard to figure out, but, generally es that we already have. So if you want to find a website speaking, you can think of things like universities, governments, professional organiabout shark cartilage [as a treatment for cancer], you’re zations, science organizations, those sorts of things.” Patients also need to gather a body of information on a topic, instead of just relygoing to find it. It can confirm these pre-conceived notions that you have, even if there is no science behind ing on a single piece of information. “Patients should never get too excited about one study. And that often is what hapthese pre-conceived notions.” pens on the Internet,” says CaulThat doesn’t mean that patients “The Internet is a big advance for field. “Health is a complicated isshouldn’t consult the Internet for incancer patients. If they have a bit of sue and, in general, patients should formation about their disease. It just means they have to be smart about direction, they can obtain world-class look for a body of information on a topic, a body of literature or a body it. “The Internet is a big advance for information that is helpful for the of research.” cancer patients. If they have a bit of patient and the treating physician,” Noting if a website is selling a direction, they can obtain worldproduct using only testimonials class information that is helpful for says Dr. John Mackey. or health claims that haven’t been the patient and the treating physibacked up by proper science is just one way you can tell that the information on the cian,” says Mackey. The Internet plays a number of roles in our lives, site is generally no good. “If testimonials are being used to sell a product or to prosays Caulfield. It’s human nature to look not only for mote something, or to suggest a health strategy, you can, in general, ignore them. Tesinformation, but also a connection online. “There is no timonials are not good research,” says Caulfield. The other thing patients should be doubt that people are turning to the Internet more and wary of is websites that claim one particular treatment, be it stem cells, genetics or more. And they are increasingly using things like social shark cartilage, will work as a treatment for a host of ailments. “That’s very rare that media – Twitter, Facebook – to build community. It’s one intervention – other than exercise – would benefit a whole different range of difbecoming one of the primary sources of health infor- ferent kinds of biological things going on,” says Caulfield. While Mackey is wary of the wild promises the Internet can make to cancer pamation,” says Caulfield. While there’s nothing wrong with searching for a tients, he believes some patients are learning to distinguish between what is real and community online, patients looking for health infor- what is hype. “I’ve been working here for 20 years at the Cross Cancer Institute. Each mation would do well to be cautious. Websites are also year, people are relying more and more on the Internet. What I think is reassuring is used to market products “and to build hype on particu- that people are becoming more Internet savvy,” says Mackey. “My impression is that most patients are smart and are increasingly aware that just because they found it lar bits of health information,” says Caulfield. So is it best for cancer patients to avoid the Internet on the Internet, doesn’t make it true. So they are coming to their health-care team to and its myriad of confusing, conflicting information check out whether things make sense or not. I think there is an appropriate level of skepticism as people become more comfortable with the Internet.” altogether? 26
summer 2015
myleapmagazine.ca
Engagement • giving patients a voice
Portal Patience Online resources are a way for patients to share the cancer experience – but they bring up the question of security BY JESSICA DOLLARD Two of my co-workers recently disclosed to me that they don’t have Facebook accounts, and I am now sitting in judgment. I am not proud of it, but I am. My first thought was, “They must be the only two left standing!” As they listed their reasons for not succumbing to social media, I could hear a little voice inside me saying: “Keep up with the times” and “Get with the program.” It was a taste of what patients and families experience when considering their healthcare and feeling frustrated with our inability to meet technological needs. Over the years I have heard many requests from our patient and family advisors for a patient portal, and have even heard our advisors say, “Keep up with the times.” A portal would include an online profile where a patient can look up appointments, see test results, provide information and updates to their providers, ask questions, access a navigation tool to help them find the location of their next appointment and even access patient education materials. To me, a non-techie but not-quite-Luddite, this seems like a reasonable request. But this is one of those instances when I am reminded that my job in engagement requires some degree of systems intelligence. In order to broker the conversation between patients, families and the organization, I need to be able to understand the system implications behind such a seemingly simple request. The first obstacle is the dangerous assumption that all patients and families have access to a computer. Some people might prefer regular mail. One thing I have learned is that the only generalization we can make when it comes to patient experience is that patients and families would like the opportunity to personalize their experiences as much as possible. In receiving our care, patients are vulnerable, and being able to have some control over that care can mean a lot to them. This means that, if some patients want paper records and some want high-tech apps, we need to have two functional systems. Don’t throw out those postage stamps just yet! Here’s the next piece in a complex puzzle: our health care organization has more than 80 systems all containing pieces of secure patient information and some of the integral patient information is housed in the private sector too. I am told by my IT de-
Alber ta Cancer Foundation
partment that, even if we could get all of the information on one system, it would be tricky to display it in a logical, coherent manner, like a portal. But the most compelling obstacle might be surprising: security and privacy. Recent security breaches shared in the media remind me that once information is available online, it can be stolen. Our teams of IT gurus are always working on keeping information safe but this is a key consideration when thinking about creating a patient portal. In terms of privacy, we would need to consider whether all medical professionals would have access to see all patient information. What about a “proxy login” – can family members or those with power of attorney see a patient’s data? A patient may want a sensitive test done or for his or her diagnosis to be kept completely private and only available on a need-to-know basis. But once we have the information all together, how do we control access? There are many unanswered questions, yet I can hear one of my wise patient advisors saying as she reads this: “If the U.S. can figure it out, I know we can, too.” This is truly the beauty of engagement: seeing the whole picture and all of the pieces of the puzzle. And a little dash of encouragement and patience goes a long way, too. If I were a betting person, I would say that we will have a patient portal before my co-workers ever join the world of social media. Now that is something I can “like.” 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.
summer 2015
27
Lovers
28
summer 2015
myleapmagazine.ca
ROCK BY ROBBIE JEFFREY / PHOTOGRAPHY BY JENN HAIG
A financial relief program allowed a Morinville couple to focus on what’s important – their recovery, and each other
T
SOUL MATES: Married since 1982, Tammy and Geoff Wegrich say financial difficulties and a series of health problems, including a cancer diagnosis for each of them, have only made their love stronger.
Alber ta Cancer Foundation
ammy Wegrich was preparing for her daughter Courtney’s wedding in July 2011, making decorations for the hall, sewing, and designing tables, “helping out with all the things moms do when their daughters are getting married,” she says. She took a break for a regular doctor’s appointment and opted to undergo one of the unpleasant aspects of the physical – providing a stool sample. That simple test saved her life. Though she exhibited no symptoms, the sample came back positive and a colonoscopy that November revealed she had stage three colon cancer. In two weeks she was having surgery. “It was really quick – within a couple weeks it was like ‘Boom! This is what you’ve got,’” she says. “Then boom! Surgery. Boom! Chemo.” She punctuates the timeline of her cancer diagnosis with such emphasis because it was an explosive time for the Wegrich family. On the more sanguine side of life, Courtney got married, but Tammy’s husband Geoff was in the clutches of some devastating health problems, himself. On St. Patrick’s Day of 2009, Geoff had gall bladder surgery. Then, on December 30, 2009, on their 27th wedding anniversary, he had surgery on his lymph nodes, to definitively rule out tuberculosis – which also confirmed the suspected leukemia hinted at from previous blood work. Then, in 2010, he had an angiogram that found he needed triple-bypass open heart surgery. This was followed by two colonoscopies, having a basal cell carcinoma removed, and a splenectomy. His spleen was so enlarged because they had held off on the surgery during Tammy’s chemo treatment, that when it was removed, it weighed four pounds, says Tammy. “We called it Doug,” she says. All told, Geoff had six surgeries in just as many years. His children joked that he had so many scars on his body he ought to get a vertical-running tattoo of the top of a zipper, to give the impression he could come together or apart with just a tug. Geoff and Tammy were married in 1982, she at 23 and he at 30, after meeting through friends and living together for two years. They were married in the living room of a justice of the peace, and while Tammy admits it wasn’t the most Disney-like of beginnings, they didn’t need pomp and ceremony to demonstrate their love for one another. It was
summer2015
29
transparent, and still is, she says. “We love each other mad- childhood, Tammy was an “off-and-on stay-at-home mom,” running a daycare at home ly and we’re supportive of each other no matter what we’re for six years as a young mother and later working with Sobeys for seven years. With both going through.” Above their bed they have a printout of the of them tackling a cancer diagnosis at the same time, they feared that their children lyrics to “All About our Love,” a cut from English soft-rock would worry about them too much, that they couldn’t be there to provide their children with the mental support they’d need. “When you’ve got kids and grandkids and you don’t singer Sade’s Lovers Rock album. Geoff began driving a bus for the City of Edmonton in know what the future holds, the uncertainty is pretty scary,” says Geoff. The doctors scheduled the couple’s chemotherapy so 1975, when he was just 23; they could support each other as much as possible. But 2015 marks his 40th year. “We took the biggest sigh of relief the financial burden grew. Each trip to the Cross Cancer “I love interacting with the because we knew she was going to Institute from their home in Morinville added 85 kilomepeople,” he says. “With my seniority I had the choice of help and we weren’t going to have to tres to the odometer, parking four times each treatment week wasn’t cheap and the cost of prescriptions were any shift, so I always startstruggle,” Tammy Wegrich says. through the roof. Though their chemotherapy was coved at 4:30 in the morning.” ered, Tammy and Geoff had to pay out-of-pocket for some But Geoff’s last day of work was when he discovered he needed open heart surgery, in of the cost of the drugs that relieve the chemo’s side effects. A generic anti-nausea drug 2010. For the longest time, he missed the job, he says, add- cost around $400, and one fill wasn’t enough. Without any savings to fall back on, they ing “but I’m in a good place now.” On long-term disability, quickly exhausted Tammy’s RRSPs from her time at Sobeys. As the financial and emohe’s still an employee receiving a paycheque, though he’s tional toll of two cancer trials accumulated, “Life almost stopped, it seemed,” says Geoff. unsure if he can ever return to work. He still has shortness of breath; his health is “up in the air,” Tammy says. After Tammy’s diagnosis and surgery for colon cancer in 2011, Geoff and His white blood cell numbers tend to creep back peren- Tammy attended a class that prepares patients and their families for the intricacies of nially, and he’ll show symptoms like bruising and sweats. living through chemotherapy treatments. While attending that class in early 2012, they His numbers are just far enough below the maximum cell were put in touch with Teresa Skarlicki, a social worker with the Cross Cancer Institute count, however, to put them in the “normal” range, so who, as a liaison, also administers the Patient Financial Assistance Program (PFAP), technically he’s in remission. “They were hoping he might designed to help cancer patients to deal with the extra financial burdens of a cancer get five years of remission, if he was lucky,” says Tammy. diagnosis. “I think everybody wishes they could shoulder the burden without asking for help, but I felt like it was more of a burden that we could deal with at the time,” Tammy “We just take every day as it comes.” Tammy and Geoff have three grown children, the says. Skarlicki immediately started working with the Wegrichs to help them cover youngest of whom is now 26, plus three grandchildren expenses. “We took the biggest sigh of relief because we knew she was going to help and a fourth on the way in July. Throughout her kids’ and we weren’t going to have to struggle,” Tammy adds. “Teresa was extremely warm, 30
summer 2015
myleapmagazine.ca
compassionate and understanding – all the things you hope for when you reach out for help.” Skarlicki began her professional life in medicine, but not as a social worker. She started as a lab tech, and while she enjoyed the medical atmosphere she preferred interaction with humans rather than equipment. She wanted a change of career and, by 1995, was working with seniors in geriatric programs and home care. In 2002, she joined the Cross Cancer Institute and with the exception of a few months off in 2009, has been there since. “It’s really a privilege to journey with people through such a difficult and vulnerable time in their lives, and to be able to make a difference,” she says. PFAP helps patients with a demonstrated financial need with the unexpected financial costs that arise as a result of cancer. After an investigation of a patient’s financial situation, the program can cover the cost of travel, parking, medications and sometimes food or monthly expenses. Income replacement is not its mandate, though it aims to be as comprehensive as possible. Payments work through either reimbursement or direct billing from the vendors, like pharmacies or hotels; Tammy says that they paid for their parking and sent Skarlicki their receipts, but when it came to their prescriptions they never saw a bill. Skarlicki says that direct billing is essential for some patients who can’t cover up-front costs. “It’s hard to realize that some people are running at a deficit, and so they’ve had to say, ‘I’m sorry – I know I’m having chemo but I can-
not buy that drug because I don’t have $20. I don’t know what I’m going to do.’ ” Skarlicki says that often patients find it more difficult to deal with the financial aspects of cancer treatment than the medical aspects. She describes seeing patients whose body language makes evident that they’re stretched beyond their capacity to cope, and it’s not for their health but for their bank accounts. “If you can give them a little bit of help, a lot of that stress melts away and they can go forward and focus on trying to make it through cancer, because it takes all of your internal resources to make it through treatment,” she says. “I’ve personally journeyed with people who didn’t have to worry about their finances, but I saw the toll [cancer] took on their lives emotionally, physically, psychologically and spiritually.” Couples are usually loath to discuss finances even in good health; when anxiety of a cancer diagnosis is looming, the stress is compounded. When the anxiety of a cancer diagnosis is looming, the stress is compounded. With Skarlicki’s help, “we could concentrate on getting better,” says Geoff. Today, Tammy gets her blood work done every three months and is doing great. And though his numbers tend to creep back into risky territory, Geoff is happy to be in remission. “It’s been a long road for the last six years, but between him and me there’s light at the end of the tunnel,” Tammy says. Skarlicki uses the word “journeying” to describe her task as a social worker. “It has a beginning, middle and end, and once we start on this trajectory it really takes the patient through a wide spectrum of emotions,” she says. “There’s the feeling of shock, loss, fear and anger, and then the Cross becomes a safe place of nurturing, and then they’re let go, back into their community, and it’s both scary and a relief at the same time. You’re never the same person after such a life-changing experience.” But for Geoff and Tammy, there is consistency. “It’s all about our love, so shall it be forever, never ending,” read the lyrics above their bed. And what seems like the end of the story is really just a new beginning for the couple, now married for 33 years and still best friends. “We’ve seen some suffering ... we know whatever may come, we can get through it as if it’s just begun,” the song continues.
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
32
summer 2015
myleapmagazine.ca
Hopping the Pond The United Kingdom has adopted patient partnerships more readily than North America. What can we learn from them? BY SÉAMUS SMYTH
O
/
ILLUSTRATION BY HEFF O’REILLEY
ver the past 40 years, we’ve come a long way in terms of cancer dering side effects of chemotherapy and the long-term survivorship. But while more Albertans than ever before are surviving effects of having lived with cancer? “These things don’t register as frequently on our cancer, there’s still a long way to go. And one way that we can find research radar, because we have been so focused on improvement is through patient engagement. Patient engagement aims to give patients more input and say into what works treating cancer,” says Lechelt. “So we are seeing an opand what doesn’t throughout their diagnosis, treatment and survivorship. It’s a portunity to have more involvement in what is importconcept that has gained significant ground in the United Kingdom and is only now ant to survivors.” Cross Cancer Institute oncologist Dr. Michael Sawbeginning to take hold in North America. The term “patient engagement” has often been used to describe the field, but yer says one of the keys to opening up this commuLeah Lechelt, Alberta Cancer Foundation’s director of patient partnerships, says nication is having drug companies listen to what pacalling them “patient partnerships” is becoming the preferred choice of language tients deem helpful and useful. While cancer survival nowadays. They’re essentially the same idea: that patients, their families and sup- rates have continued to grow in Canada, and toxicity port networks should be involved in the decision making process when it comes to rates have declined significantly, the side effects of many drugs given to patients (like anemia, appetite identifying improvements in cancer care. If anyone knows the value of this kind of engagement, it’s Derek C. Stewart, an changes, constipation, diarrhea, and fatigue and hair associate director with the Clinical Research Network in England, which works in loss) can still have a negative effect on a patient’s day. The Cross uses a 4.0 conjunction with the National Institute While cancer survival rates have continued grading system on toxicity. for Health Research. Based out of the UK, Zero is basically the absence Stewart is more than just an expert in his to grow in Canada, and toxicity rates have of side effects and four is field – he’s also a cancer survivor who bedeclined significantly, the side effects of life-threatening side effects. lieves that patients should have more say many drugs given to patients can still have a “A lot of new drugs range in the decision making process surroundnegative effect on a patient’s day. between one and two,” says ing research and treatment. Sawyer. “That, compared to “This is not about patients taking over but about identifying priorities where, through a shared endeavour, we could make older drugs, in a way is amazing. But from the patient’s a significant difference to help future patients and their caregivers,” says Stewart. perspective, having side effects every single day levels “Engaging patients can help inform, shape and influence what is researched – from of one and two levels is not that great. These side efthe questions that are asked to helping make the outcome measures meaningful fects still have a toll on people’s lives.” Sawyer uses the example of a patient with thyroid and relevant. We can ensure that appropriate information about research opportunities is made available to help participants have a good experience and demand cancer, explaining that while the cancer is in check and he or she generally feels better, he or she still can’t plan that we hear about the results.” A recent visit to Canada has Stewart optimistic about the ideology taking hold the day without knowing where every washroom in the across the pond. Lechelt says her field is a new discipline emerging at “quite a vari- vicinity is located. “I think that drug companies would able pace in Alberta,” and it is no different in cancer care and research where truly benefit from developing their drugs if they stepped back and actually listened to what the patients think,” listening to the voice of the customer is still a relatively new phenomenon. “The idea of patients being more involved in deciding [where] our cancer re- he says. “If the drug companies would design more tolsearch and investment dollars [go] is the right thing to do for a lot of reasons, but it erable regimens, if they stopped and listened to some also has some challenges,” she says. “On the one hand we want to protect research of the issues that the patients are actually experiencing autonomy, yet we also want to build stronger connections between patients and re- then they would realize how the patients view them.” Through patient partnership, that thyroid cancer searchers so that we are funding things that are considered a high priority to everypatient’s experience could soon make the cancer body. So it’s about learning how to increase the circle a little bit.” While surviving cancer has always been the priority, part of cancer treatment also experience – from diagnosis to treatment – better for includes helping patients after their treatment. How can they contend with the hin- everyone.
Alber ta Cancer Foundation
summer 2015
33
Why I Donate • stories of giving
THAT’S THE SPIRIT Carnival Cocktails for Cancer honours the memory of larger-than-life ‘Jen Unplugged’ while raising money for the Alberta Cancer Foundation BY JACQUELINE LOUIE
J
/ PHOTOGRAPHY BY ERIK MERCIER
ennifer Gardiner, or “Jen Unplugged” as she was known to many, was a force of nature, a larger-than-life personality and a stalwart in many Calgary circles. Now, more than a year after her death at the age of 48, Gardiner is still inspiring people, bringing them together, and making a difference. “She really captivated people. Her personality was so big, so glowing. She loved fashion, she loved travelling, she loved life. She had a huge heart,” says Jesse Willis, who is Gardiner’s stepson-in-law (his partner Laura is the daughter of Gardiner’s husband, Sean Dunnigan). As co-owner of Vine Arts Wine & Spirits in Calgary, Willis founded Carnival Cocktails for Cancer in Gardiner’s memory, a fundraiser held earlier this spring, with money raised going to the Alberta Cancer Foundation and the Jennifer Gardiner Chair in Surgical Oncology, an endowment fund at the University of Calgary’s Cumming School of Medicine. “We were really close and good friends,” Willis says, of his relationship with Gardiner. “She was always hugely supportive of Vine Arts, the work I was doing and what we were trying to build. We had a lot of fun together.” Holding this type of glam event was an idea that Willis and Gardiner had discussed, even before Gardiner was diagnosed with cancer. When they first began tossing the idea around, they envisioned it as a carnival-themed food, wine and cocktail event, focused around a new business that Gardiner was preparing to launch: an online Calgary lifestyle magazine called Calgary Unplugged. Gardiner had just quit her job working for Berkshire Hathaway’s Business Wire, “because she wanted to go out and do something on her own,” Willis explains. “Calgary Unplugged was going to mash up a lot of different things. She was interested in style, fashion, food and wine, and things happening in the city.” Willis had suggested that Gardiner hold Carnival Cocktails as a promotion for her new magazine, to help launch her business. “We also intended there to be a charitable benefit,” he explains. After Gardiner was diagnosed with stage four colorectal cancer in December 2011, they still wanted to hold the event, but eventually decided to change the focus. “That’s when it became a fundraiser for the Alberta Cancer Foundation, raising awareness and money for that cause,” Willis says.
34
summer 2015
Gardiner soon became an advocate for the Alberta Cancer Foundation. And her story was chronicled by Canadian filmmaker Judy Gabriel in Uplife Project: Jen Unplugged, and screened in Calgary, Edmonton and Toronto. Her family has been selling DVDs of the documentary, with a portion of the proceeds going to the Alberta Cancer Foundation to support clinical trials at the Tom Baker Cancer Centre. Gardiner enjoyed a strong following on social media, and on Facebook she became an inspiration “to a lot of people,” Willis recalls, noting that Gardiner had 2,400 Facebook friends. “It was a support network – a lot of people would reach out to her. She inspired people to live life in the moment. She’d post pictures of herself at a chemo session in a crazy outfit with a crazy pair of shoes and a big hat. “The biggest thing was how she was never really concerned for herself – she was always concerned about how her diagnosis was affecting other people, and about really being supportive of her family and friends.” Willis and Gardiner planned to organize Carnival Cocktails together. After her death in February 2014, Willis carried on, with the support of the Dunnigan family, organizing Carnival Cocktails for Cancer at Hotel Arts and drawing on his many contacts in Calgary’s flourishing restaurant and cocktail bar community. “We have a lot of friends who are chefs and bartenders at some of the best restaurants in the city, and I reached out to a group of them and pitched the idea of the event,” he recalls. “There have been some awesome people helping me.” Carnival Cocktails for Cancer, a festival-style cocktail
myleapmagazine.ca
ALL THAT GLITTERS: Carnival Cocktails for Cancer, a festivalstyle cocktail and food focused evening held in Calgary in April, saw guests sport their best to raise almost $45,000 for the Alberta Cancer Foundation in memory of Jen Gardiner.
Alber ta Cancer Foundation
summer 2015
35
Why I Donate • stories of giving and food focused evening that took place in April, included food samples by each of the 10 participating chefs and 11 bartenders, along with a silent auction. The evening raised almost $45,000. The intent was to make the event feel like a carnival midway, with a variety of food and drink options. “It’s all part of the excitement of being there,” notes Willis, a born and raised Calgarian who co-founded Vine Arts three years ago and worked in the specialty wine business for a decade before opening his own business. “Cocktail culture in Calgary is growing by leaps and bounds. There has been a resurgence in the last three to five years of classic cocktails and classic cocktail culture, all over the world. It’s hitting Calgary now. In popular culture too, shows like Mad Men have done a lot for it.” As part of Carnival Cocktails, chefs from the participating restaurants created their own unique takes on classic midway and carnival dishes. And for the bartenders, Willis assigned each a base spirit to use: vodka, gin, whisky, rum, cognac and bourbon. He also assigned them a carnival, midway or circus-related theme to follow as an inspiration for their cocktail creation – such as the trapeze, Ferris wheel or bearded lady.
“The biggest thing was how she was never really concerned for herself – she was always concerned about how her diagnosis was affecting other people, and about really being supportive of her family and friends.” Participating restaurants and bars included Teatro, Model Milk, Raw Bar, Black Pig Bistro, Brasserie Kensington, Anejo and Ox and Angela. Attendees were encouraged to dress up. Gardiner “loved fashion, she loved dressing up, in outrageous and extravagant outfits and hats,” Willis recalls. The event’s dress code included everything from “casual to fabulous, including costumes.” It’s been a hectic time for the Dunnigans and for Willis, 31, who was in the middle of opening another business while organizing Carnival Cocktails: Proof, an upscale cocktail bar, which he co-owns together with his Vine Arts partner Jeff Jamieson and Nathan Head, owner of Milk Tiger Lounge in Calgary. Gardiner’s husband Sean Dunnigan has also been “a huge advocate” for Carnival Cocktails for Cancer, helping spread the word about the event and selling tickets. Dunnigan put Willis in touch with the Alberta Cancer Foundation. He’s also very active in the Enbridge Ride to Conquer Cancer and was one of that event’s top 2014 fundraisers. Willis would like to make Carnival Cocktails for Cancer an annual event, bringing people together, raising money for cutting-edge cancer research and treatments – and honouring Gardiner’s memory. 36
summer 2015
myleapmagazine.ca
You Are
WHERE PHOTO: KEVIN KOSSOWAN
You Eat
Alber ta Cancer Foundation
Is local food really any healthier for us? BY ELIZABETH HAMES
summer 2015
37
PHOTO: KEVIN KOSSOWAN
C
hef Blair Lebsack rifles through a box of fresh produce, listing off each item’s place on the menu of his restaurant, RGE RD. His go-to farm, Prairie Gardens, is late dropping off the order. It’s already 5:30 p.m. and some items in the delivery are on the menu tonight. Caitlin Fulton, general manager and partner, stands back from Lebsack’s frenzied inventory-taking. “Often these vegetables will be picked within hours of us getting them,” she says. “It’s really nice, but it also means we’re operating by the seat of our pants.” Lebsack and Fulton have been operating by the seat of their pants since opening about a year ago. Their location on trendy 124 Street in Edmonton is busy nearly every night of the week, and they’re already expanding into the space next door. Lebsack waves goodbye to the farmer, Tam Andersen, as he sits at the table next to Fulton. He pinches the lime-green stem of a piece of organic mizuna, a leafy green crowned with tiny golden flowers. “This is why we’re so excited for spring,” he says, his eyes trained on the delicate petals. “We’re starting to get things like this.” RGE RD gets the majority of its vegetables from Prairie Gardens in Sturgeon County. This winter, they went through 12,000 pounds of the farm’s onions. They have a similar relationship with local ranchers. “As soon as we need a pig, they get it slaughtered, bring it to us the next day and then we butcher it all here,” says Lebsack. It’s just part of daily life for a restaurant that serves up 95 per cent local food (“We have strayed, because of lemons,” says Lebsack). RGE RD is a key player in Alberta’s fast-growing local food movement, which is facing a crisis of identity as it strug-
gles to define the term “local food,” and its reason for existence. One of the most compelling cases for eating local is health. It’s a refrain taken for granted by the movement’s champions: Local food is healthier than food imported from out of province, or out-of-country. But is it? The answer is a complicated one that relies on how local food is defined, and a person’s choices at the farmers market. Farmers markets have seen a spike in popularity over the past decade. Nearly threequarters of Alberta households visited a farmers market in 2012, spending an average of $55 per visit. That’s up from just over 60 per cent of households in 2004. Surveys of buy-local purveyors consistently show that the reasons people purchase local goods are varied. Lebsack was into local food as a child, only he didn’t call it “local food” back then. He grew up on a farm near Edmonton, and almost everything his family ate was harvested from his family’s own fields and animals.
Farmers markets have seen a spike in popularity over the past decade. Nearly three-quarters of Alberta households visited a farmers market in 2012, spending an average of $55 per visit.
38
summer 2015
myleapmagazine.ca
PHOTO: DETOUR PHOTOGRAPHY
FARM FRESH: Before opening RGE RD, chef Blair Lebsack and his business partner hosted a dinner on the farm that would become the restaurant’s meat supplier, calling it Dinner on Range Road 135 (due to its location).
In contrast, farmer John Schneider’s entry into the local food movement was a conscious one. He founded Gold Forest Grains eight years ago to preserve heritage varieties of wheat which he believed were at risk of extinction.“I just thought it was a relatively noble thing to do,” he says. Schneider’s heritage grain products quickly became a hit with Edmontonians – in part because of the perceived health benefits. Schneider’s flours contain the whole grain – including the germ oil, which is removed from commercial flours because it can go rancid over time. He is quick to point out that he is no scientist, and he doesn’t keep up with the latest research on the health benefits of germ oil and the nutrients that could be lost when it’s taken out of the flour. “But my customers pay attention to that, and that’s what they’re demanding,” says Schneider. In 2007, “locavore” became the word of the year, and Alisia Smith and J.B. MacKinnon published their book The 100-Mile Diet: A Year of Eating Locally. That same year, researchers followed a group of adults in Virginia for four months as they attempted to consume a diet of 100 per cent local foods. The majority of the participants lost weight, but they also ate a lot more cholesterol. The researchers blamed the high-cholesterol intake on the lack of local healthy fats, such as olive oil, nuts and fish. To fill the caloric gap, the participants ate more butter, lard, pork and beef. But they also dined more on vegetables and fruits, their consumption of which increased by one-and-a-half cups per day. “This could lead to a significant reduction in chronic disease risk,” the researchers
wrote. Still, they cautioned that the study was conducted in the summer, when fresh fruits and vegetables are plentiful. And a strictly-local diet in the winter months may not have the same effect. Research shows that some produce, such as apples, tomatoes and peaches, continues to ripen after it is picked. So it is harvested before it is fully mature, so it can ripen during transport. While the Vitamin C content can increase slightly after harvest, there is some evidence that Vitamin C content doesn’t reach the same levels as if the produce were left on the vine to ripen. Dairy and meat products, when stored properly, don’t lose nutritional value over time – at least, not enough to have a noticeable impact on health. For Kevin Kossowan, an Edmonton-based filmmaker and local food educator, the answer to whether local food is more nutritious lies, not in the distance the food has travelled, but in the relationships the buyer has with his or her farmer. “We have the best free-range pigs that you could probably want to buy from farmers an hour-and-a-half away from here,” says Kossowan. “Within that same half-hour
“So you pick your food source in Alberta and we probably have the best and the worst within a twohour drive of the city,” says Kevin Kossowan.
Alber ta Cancer Foundation
summer 2015
39
PHOTO: KEVIN KOSSOWAN
drive, we have the densest pig farms that would probably make most people sick if you were to actually enter them. So you pick your food source in Alberta and we probably have the best and the worst within a two-hour drive of the city.” As a result, the term “local food” doesn’t mean much for Kossowan. He’s more concerned with building relationships with farmers and knowing where his food comes from. The same is true for Lebsack and Fulton. Their restaurant’s success turns on their relationships with farmers – particularly their meat farmers. In 2011, before Lebsack and Fulton had found a space for their restaurant, they hosted a dinner on the farm that would be the restaurant’s primary supplier of meat. The farm was on Range Road, an-hourand-a-half from Edmonton, so they called the event Dinner at Range Road 135. Every ingredient on the menu would be sourced right from the property or from neighbouring pastures, and they would charge diners for the privilege. For Lebsack, the dinner underscored the philosophy of, not just the future restaurant, but the local food movement: Connecting diners with their food. “I don’t think you can open a restaurant today and just put a name on it and say you’re serving food,” he says. “The only way we could is by showing people what we’re doing.”
Alberta Cancer
Clinical Trials Website
Learn more at www.albertacancerclinicaltrials.ca
Tomorrow’s Treatments Today
Donate today at albertacancer.ca
Corporate Giving • working for a cause
FOOD FOR THOUGHT BY ROBIN BRUNET
The Hennigs make fundraising for the Alberta Cancer Foundation a family affair Charity may be the noblest of human activities, but it’s not always easy to stay motivated. Why would a man in his 50s incur blisters and frozen toes year after year in a marathon charity hockey game? Why would his wife dish out food for hundreds of people at that same game in freezing cold temperatures? And why would their teenage daughters willingly crop their hair to make wigs for chemotherapy patients? The family in question is the Hennigs and, as acquaintances will attest, helping raise funds for cancer research is as natural to them as any family-oriented activity. “It’s never a question of staying motivated because the gratification we get from fundraising is the best reward,” says Colette Hennig, co-owner of the venerable Stawnichy’s Ukrainian food company in Mundare, Alberta. Stawnichy’s and the Hennigs are long-time participants in the World’s Longest Outdoor Hockey Game, an Alberta Cancer Foundation fundraiser which this year eclipsed its $1-million fundraising goal. Funds raised IN THE FAMILY: Clockwise from left, Les, Jayde, Colette, Taylor and Jordyn through the game go towards the purchase of a PET-MR Hennig have made raising money for the Alberta Cancer Foundation through their family business and other means part of their collective mantra. scanner at the Cross Cancer Institute, a machine that combines the detail of an MRI with the abilities of a PET scan in order to show exactly where cancer tumours are ing tally over the years comes to a grand total of $127,674. and how they’re affecting the body. But how did the Hennigs come to be such ardent charity workers? As usual, Les Hennig, 52, was among the 40 players As the son and eventual inheritor of the meat company launched by Woyko and Anna who endured frozen and blistered digits to play 250 hours of straight hockey (a feat that, incidentally, broke Stawnichy in 1964, Edward always felt running a business was a great opportunity for the Guinness World Record for the longest ice hock- community building. “Dad loved raising funds for all sorts of causes, including the Alberta Cancer Foundation,” says Colette. “He loved ey game.) Colette was stationed in her moto“Dad loved raising funds for all sorts of helping out the local hospital and fire department. If he heard about a cause on the radio, he lost no rhome dispensing food causes, including the Alberta Cancer time figuring out a way to get behind it.” and beverages to everyFoundation,” says Colette Hennig. Colette adds, “He had such enthusiasm for getone. “Leslie keeps saying ting involved because to him it was being appreciahe’s too old to play in marathons, but we all know he’ll be back,” she says with tive of what the community had done for him.” One of Edward’s philanthropic actions a laugh. “He’s managed to raise over $74,000 during the was in 2006, when he spent $11,000 at an auction for a pink guitar signed by musicians of the Big Valley Jamboree. “Needless to say, dad’s enthusiasm rubbed off on all of us,” says three games he’s played to date.” Colette’s activities generated $17,000 this year Colette. Edward’s death from cancer at 65 on May 11, 2009, was a huge loss for the family and a ($15,000 in 2011), and just as in years past, every penny goes to the Alberta Cancer Foundation. Colette and Les- blow to the Alberta food world. But just as he had built up Stawnichy’s to thrive beyond lie’s daughters, Jordyn, 12; Jayde, 16; and Taylor, 21; have his lifetime, so too does his community spirit invigorate the Hennigs during subsequent gladly shorn their locks to help chemo patients. Most World’s Longest Outdoor Hockey Game events and other fundraisers. “Dad would have remarkably, Jordyn’s first “Cut for Cancer” event, staged loved this year’s game,” says Colette. “He would have been dishing out food or encouragin her school gymnasium when she was seven with local ing neighbours to donate.” Optometrist Brent Saik started the fundraiser in 2003 to honour his father, who died media attending, caused observers to donate $16,074. “My daughters are constantly checking to make sure from cancer. And while the Hennigs honour Edward with their ongoing participation, I’m doing all I can for the cause,” says Colette. “They’re they take great satisfaction seeing communities get together for the greater good – never relentless to the point of distraction, but it’s wonderful mind the blisters. “We know exactly how Dad felt: watching people pull together is into see them so committed.” The Hennig family fundrais- credibly rewarding. We can’t wait for the next event.” Alber ta Cancer Foundation
summer 2015
41
Top Job
HAPPY ENDERS: After 40 years in healthcare as a nurse and nursing educator, more than 20 of those in cancer care, Wayne Enders will hang up his stethoscope in 2016.
42
summer 2015
myleapmagazine.ca
A
FINE FINISH After 20 years in community oncology, Wayne Enders is getting ready to retire BY LISA CATTERALL
/ PHOTOGRAPHY BY BUFFY GOODMAN
S
itting in the sun-lit lobby of the Cross Cancer Institute, Wayne Enders watches as patients, families and colleagues pass by. Having worked out of the Cross for nearly a decade as a nursing educator with the province’s Community Oncology Program, he is all too familiar with life in the hospital. “The nurses, the doctors and all the staff in cancer care make a huge difference,” Enders says. “And sometimes I don’t even think they realize it. That’s what attracts me to working in oncology, we do make a difference every day.” Enders has dedicated his entire professional life to patient care and nursing education. Now, after more than four decades in health care, he is about to embark upon a new adventure. Making the decision to retire in 2016 was not easy, but it is time for a well-deserved break for Enders. He was one of the first nurses to become involved in the Community Oncology Program almost 20 years ago, so his retirement will mark the end of an era.
Alber ta Cancer Foundation
summer 2015
43
Top Job
GO-TO GUY: Often called a go-to guy by his colleagues in the Community Oncology Program, Wayne Enders is looking forward to concentrating on hobbies like woodworking in his post-retirement days ahead.
Though soft-spoken, Enders’ passion for nursing, education Enders worked as the primary nurse in the Barrhead Community and oncology is instantly apparent when he discusses his expe- Cancer Centre for the next decade, working directly with patients riences over the last 20 years in community cancer care. When and families each day. When the opportunity to work as a nurse the first Community Cancer Centre first opened in Camrose in educator within the Community Oncology Program became avail1996, Enders was working in the emergency department of the able, Enders was hesitant to leave his frontline job for a behind-thehospital in Barrhead. Community scenes role. After much deliberaoncology was a new concept, and tion, he decided to make the change “The true effect of a community eventually grew from one clinic in and began working out of the Cross oncology nurse can be seen in Wayne Camrose to include the communiCancer Institute in 2006. Being ties of Bonnyville and Barrhead as away from patients was difficult at and the differences that he made in his well. When he learned that the projfirst, but eventually he found nurscommunity. He paved the way for the ect would include Barrhead, Enders ing education had its own rewards. rest of us,” says Tanya Hines. was intrigued. “What I miss most, and still to this “I decided that it was an opportuday, is the constant contact with the nity that I wanted to explore. Once I got into it, I realized oncology patients. And I sorely missed that for a long time. I moved forward and is quite an amazing place to work,” he says. “It’s all about hope, in- evolved into this role, and found that I got my satisfaction and sense novation and providing really good care. It’s a pleasure and a privi- of self-worth from knowing that I could impart knowledge and skills lege to care for these people. They face some uncertainties and dif- onto new nurses coming into oncology. Knowing that they’re going to ficulties in their lives while experiencing cancer and you know, it’s go on and care for those patients with high standards, compassion and just inspiring.” commitment, that gave me fulfillment as well,” says Enders. 44
summer 2015
myleapmagazine.ca
has evolved from just a few people to a significant, group of colleagues and professionals providing a tremendous amount of quality care to the people of rural Alberta.” Enders’ down-to-earth, dedicated and passionate nature has made him a sought-after advisor for oncology nurses in the 11 community cancer centres and four regional cancer centres around the province. “We call Wayne our guru,” says Tanya Hines, primary nurse for the Drayton Valley Community Cancer Centre. “He’s kind of the go-to guy for everything with us. He just has a vast amount of knowledge in oncology and the problems that we face away from the larger centres. The true effect of a community oncology nurse can be seen in Wayne and the differences that he made in his community. He paved the way for the rest of us.”
“I’m very much about taking advantage of the strengths of the team members, and I’m privileged to work with an amazing team,” says Wayne Enders.
Though it may have been a difficult transition for Enders, colleagues in the Community Oncology Program are grateful to have had the opportunity to access his knowledge and expertise. Sarah Champ, the Screening for Distress coordinator at the Cross Cancer Institute, has worked closely with Enders for the past two years, and credits him with much of the knowledge she has acquired in that time. “I’ve learned so much from him,” says Champ. “From basic knowledge of cancer and cancer treatments, really expanding to everything. He has taught me about everything from leadership to different ways to approach things and looking outside of the box.” Over the last four decades, Enders has seen a considerable amount of change throughout Alberta’s healthcare system. He has come to accept the constant change that occurs in nursing, and has learned to embrace the positive effects the profession has had on community cancer care. “When I started out in nursing, we still had glass bottles for intravenous. Over the years there has been a huge focus on both patient and staff safety. So, things evolve,” he says, “And the division of Community Oncology, which I have been so fortunate to be a part of,
Alber ta Cancer Foundation
Since 2006, Enders has had an impact on countless nurses, and by extension, patients’ lives across the province. Each year, he spends weeks on the road, away from his family, bringing education to each of the centres around the province. These trips can be taxing on Enders’ private life, but professionally they more than make up for it by offering a chance to reconnect with nurses and the realities of community cancer care. “Those are probably some of the best days, when we get to go out and be with the staff members and see what it’s like on the front line again,” he says, “We try and support them in the very best way that we can so that they can do their jobs and provide top quality care.” Enders and his colleagues try to visit each of the community cancer centres at least twice a year, usually in spring or fall, to bring continuing education to nurses around the province. The content ranges from new policies to changing procedures and education on new drugs available for patients. During the remainder of the year, Enders and his team dedicate their time to staying abreast of any new technologies, processes or care regimens that would be useful for nurses in the Community Cancer Program to learn about. They then use this ever-evolving information to update their educational materials and ensure that staff have access to any pertinent developments in the field. “Health care changes by the minute. Technology and knowledge are moving so fast it’s difficult to try to keep up,” Enders says. “The fact is, within our small education team, we each kind of take a certain piece and we build on each other’s strengths. I’m very much about taking advantage of the strengths of the team members, and I’m privileged to work with an amazing team.” With his departure set for less than a year from now, Enders’ team will need to work hard to find a replacement to fill in for his lost expertise. And though he will miss working with an amazing network of oncology healthcare providers, he is ready for the next phase to begin. A wide grin grows across his face when he thinks of the future. “I have two young grandchildren and another one on the way,” he says proudly. “And I have many hobbies. So, I plan to be even busier than I am now.”
summer 2015
45
Research Rockstar
Bench to
Bedside Researcher tackles complications of bone marrow transplants to bring recipients relief BY LYNDSIE BOURGON
/
PHOTOS BY JOEY PODLUBNY
W
hen Dr. Jan Storek started his career, bone marrow transplants were a new development that gave hope to leukemia patients around the world. “Until then, chemotherapy had provided some hope, but it turned out to be small,” says Storek, from his office at Calgary’s Health Sciences Centre. “That made me go into the field, because it’s very rewarding to see a patient who would otherwise have died, survive.” Still, while bone marrow transplants have changed the way we treat leukemia for the better, the procedure is not without complications. With his “bench to bedside” manner, Storek has set out to tackle these side effects, including the biggest – graft versus host disease (GVHD).
46
summer 2015
myleapmagazine.ca
PRE-EMPTIVE STRIKE: Since March 2014, Jan Storek and his team have been working on a clinical trial for a pre-emptive therapy that could one day be given to patients at risk for graft versus host disease.
Alber ta Cancer Foundation
summer 2015
47
Research Rockstar
Graft versus host disease is a complication that can that would minimize their risk of developing the disease. “Prophylactics for these occur after a stem cell or bone marrow transplant, when kinds of complications are possible but also toxic, so you don’t want to give it to evthe immune cells from the bone marrow donor attack eryone,” he notes. Clicking through one of the presentations that he often gives on his research, the recipient’s body. GVHD symptoms take the form of Storek displays a series of colourful nausea, vomiting, diarrhea, jaundice, pie charts that outline what life is dry eyes and mouth, shortness of “He goes to clinic and sees those people, like for many leukemia patients after breath and skin tightness or rashes. then comes to the lab and is working on treatment. Only about 35 per cent of About 10 per cent of patients die their problems. I think that’s why he’s so patients are “true” beneficiaries of a due to severe instances of GVHD, and about 25 per cent of patients will successful. He’s in it for the right reasons and bone marrow transplant – meaning they live without complication after struggle with the disease long-term, that’s very inspirational for us in the lab,” the procedure. About 20 per cent of meaning poor quality of life. Storek and his research team says research technician Samantha England. patients die due to a relapse of the disease and about 10 per cent die have been working to find ways that would predict which patients are at risk of develop- from other causes. Alberta’s three-year survival rate for leukemia patients, at 50-75 ing GVHD. By doing this, patients deemed at high risk per cent, is actually high compared to the rest of North America (25-55 per cent). “We would eventually be able to receive a prophylactic drug are doing not bad, but we are still dissatisfied with the fact that only 35 per cent are 48
summer 2015
myleapmagazine.ca
and sees those people, then comes to the lab and is working on their problems. I think true beneficiaries,” says Storek. He points out the slice that’s why he’s so successful. He’s in it for the right reasons and that’s very inspiraof the pie that represents “alive and well” patients: tional for us in the lab.” A typical day for Storek can take place anywhere – in the lab, at “We want that part of the pie to get bigger.” the University of Calgary or at the Tom Baker Cancer Centre. “Some days I am in the Storek grew up in Prague, Czech Republic, and has clinic, some days at the in-patient service, some days I write grants or go to student spent his career travelling between research institupresentations to evaluate them,” he says. tions including the University of California, Los AngeWhen he’s not working, Storek is active in his church and often goes on charity les and the Fred Hutchinson Cancer Research Centre trips abroad. He’s also very active in the outdoors and enjoys hiking and backpackin Seattle, before heading to the University of Calgary. ing. He’s also a coach at the Rocky Mountain Jackrabbits Ski Club. “I enjoy the fun of “He’s a doctor and a researcher, so he knows about leading kids into a love of the outdoors,” he says. both worlds,” says Rosy Dabas, a second-year PhD “You get the impression that he’s doing a really good job at a difficult balancstudent with Storek. “If you go to him with a scientifing act,” says England. “In science there are so many details, it’s very specific and it ic or technical problem, he remembers a paper from changes fast, and it seems that he’s effortlessly abreast of the updates in the lab and 20 years ago or experiment from 15 years ago that can can remember it all.” help. You are awe-struck all the time, when you have a Storek is, predictably, modest about his work ethic. “The success is not my sucmeeting with him.” cess, but the success of the whole team,” he says. He has worked with collaborators Researchers know that to help prevent complicain clinical research like Poonam Dharmani-Khan and Mamta Kantharia, and says that tions like GVHD, they’ll need to consider how donors his students, lab technicians and the are matched with the leukemia patients that need them. “The immune “You are awe-struck all the time, when you residents and nurses that he works with are imperative to his work. Part cells from a donor have both good have a meeting with him,” says second-year of his work includes communicating and bad parts,” says Storek. “The PhD student Rosy Dabas. frequently with clinicians, so that good is that they act against leukethey know he and his team are in need mia, but the bad is that they also act of specimens of blood and bone marrow from patients diagnosed with leukemia. against the rest of the body and can cause GVHD. If we “They are busy, so research is not on the top of their mind,” says Storek. “By educatcan identify donors with low chances of GVHD, we will ing them on what the research can mean, they understand and can remember to nouse them.” tify us about patients.” Since March 2014, Storek and his team have been England says it’s this part of the work that’s so unique. “When we get a blood samworking on a clinical trial for a pre-emptive therapy ple it comes with a name on the label, and you know that someone on the other end is that could, one day, be given to patients at risk of having an awful day and the work feels much more important,” she says. “You can see developing GVHD. A test developed in Storek lab is how it might help soon, in science terms at least.” used to determine which patient is at a high risk of developing GVHD. The treatment itself will eventually be pre-emptive: “If you use it too late, when the disease is manifest, it doesn’t make a difference,” says Storek. Their results over the past year have been promising – none of the patients have died from GVHD, though there has been an increase in Right now I’m reading: Papers underlying my grant application. infections. “But if it continues to look as good as it My motto is: To trust in the Lord with all your heart, and do not lean on your looks now, the advantage of minimizing death and own understanding. long-term suffering due to GVHD will outweigh the My favourite place in the world is: There are too many! For example, I increase in infections,” says Storek. love any lake in the Rockies surrounded by larch trees. He is motivated by the push to advance leukemia My favourite food: Rum and raisin ice cream. treatment: “There is really only a relatively-small fracI’m happiest when: I can make someone happy. tion of patients who are true beneficiaries, because it’s a toxic procedure with so many significant complications,” Storek says. “It will not be a viable therapy 100 years from now, unless we minimize the complications. FIND YOUR MATCH: Around the world, 20 million people are “What has become disheartening for me is that registered as bone marrow donors. “Most are Caucasians,” says Dr. Jan there are a large number of long-term sufferers,” he Storek. “There is a desperate need for other ethnicities.” says, of GVHD. “Some patients die from leukemia, but You could be a match for someone out there looking for a bone there are patients who wonder why they even agreed marrow or stem cell transplant. Right now, fewer than 30 per cent of to go through the [bone marrow] transplant process patients who need stem cell transplants will find a matched sibling in if they knew were going to develop this complication.” their family. Those who are interested can register for the OneMatch This empathy for patients comes from Storek’s Stem Cell and Marrow Network, a process through Canadian Blood unique blend of lab research and work with patients in Services that connects donors with patients. OneMatch also belongs a clinical setting. “He’s very compassionate towards to an international network of registries, linking donors and patients the individuals behind this,” says Samantha England, around the world. Learn more at onematch.ca a research technician in Storek’s lab. “He goes to clinic
Asked And Answered
Alber ta Cancer Foundation
summer 2015
49
My Leap • inspiring individual
PHOTO COURTESY CINDY FAAS
CONQUERORS: Cancer survivor Cindy Faas, shown here with her children and husband Phil, credits her family and her new friends at the One Aim Cycling Club with her recovery. This year she and Phil are riding in the Enbridge Ride to Conquer Cancer.
Cycling with One Aim
By Shelley Newman
Cindy Faas finds strength and camaraderie while riding for a cure When Calgarian Cindy Faas stepped off her stationary bike after the CANSuffer to Conquer event this February, she was tired, exhilarated and emotional. With her husband, Phil, at her side and her One Aim Cycling Club teammates around her, she participated in the fundraiser she discovered a year before. “Last year in May, I went to the Southcentre Mall alone – it was important but hard for me, because it was my first bald debut after starting chemo to treat breast cancer,” she says. Once there, she discovered CANSuffer to Conquer cyclists riding to help end cancer. Seeing them, she felt an overwhelming sense of gratitude and began to thank each rider personally. “I was too emotional to thank everyone, but I knew what they were doing would continue to inspire me.” The inspiration was immediate. Faas wrote about the experience on her blog and soon heard from Nigel Brockton, One Aim’s founder, and Martin Dodd, founder of CANSuffer. “They reached out and I was immediately accepted as a part of their group,” Faas explains. “They supported me through chemo, surgery and radiation, always encouraging me to stay positive.” Armed with support from family and newfound friends, Faas began participating in events. “I had already signed up for Run for the Cure, expecting to walk,” she says. “I was motivated by One Aim and trained for the five-kilometre run while 50
summer 2015
having chemo. Two teammates, Dennis and Cam, ran with me.” One week later, just before her bilateral mastectomy and radiation treatments, Faas and her husband signed up for the 2015 Enbridge Ride to Conquer Cancer. “Phil and I never thought we’d do a 200kilometre ride – we didn’t even own bikes,” she says. “But now we have such an emotional connection with the One Aim team, and we have complete faith in the training and support they’ll provide.” Now done her treatments and cancer-free, Faas will continue to be a role model for her children and, wherever possible, for others who are faced with cancer. “By participating in the ride, I hope I can share with people going through treatment that there’s life after cancer. So many cancer survivors leading full, healthy lives, and that’s incredibly important to know.” myleapmagazine.ca
TITLE PARTNER
Together we’re creating MORE MOMENTS for Albertans facing cancer
albertacancer.ca/moremoments