Sunteți pe pagina 1din 52

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

Dont 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 Calgarys 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

Message alberta cancer foundation

Were 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

Its 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 weve 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 provinces 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 wasnt 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 cant 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

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, Samus Smyth
CONTRIBUTING PHOTOGRAPHERS AND ILLUSTRATORS:
Bookstrucker, Buffy Goodman, Claudine Lavoie Photography, Erik
Mercier, Heff OReilley, Joey Podlubny
ABOUT THE ALBERTA CANCER FOUNDATION
The Alberta Cancer Foundation is Albertas own, established to advance
cancer research, prevention and care and serve as the charitable
foundation for the Cross Cancer Institute, Tom Baker Cancer Centre
and Albertas 15 other cancer centres. At the Alberta Cancer Foundation,
we act on the knowledge that a cancer-free future is achievable.
When we get there depends on the focus and energy we put to it today.

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
WERE 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

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 Bowls
owner, says she wanted to use the donations raised
during the event in a local setting. Kohlsmith
announced the tournaments 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 Cancers 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 Masons 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 couldnt 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 its hard to do that ... But what
else do you do? You dont give up.
Masons work has also found that
patients with liver disease are responsive to anti-retroviral therapy. His
researchs 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
Masons already proved hes 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, its worth

taking a look at diet as a possible countermeasure. Heres 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 Michaels poems and Johns images of nature.
The poetry is mostly about Michaels 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 its 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 Michaels 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 its 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-aunts
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
tomatos bright red hue, is tied to its anti-cancer potential.
Cooking tomatoes in oil or vegetable fats maximizes their
anti-cancer properties.

summer 2015

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.

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.

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.

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 youd be right.
Created by one of his best friends,
Bryans 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
Mudryks own fundraising, for his annual
golf tournament in Boyle, Alberta.
For the past four years, the Angels have
hosted A Night with Bryans Angels
red-carpet party at the Lexus dealership in
west Edmonton, and a stair-climb challenge on the bank behind Edmontons
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 groups five-year lifespan.
This years fundraising goal was
$75,000, for which Bryans 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 years Lexus red-carpet
soiree, which was also held in early June.

Its been so inspiring watching Bryan


do everything that hes 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
didnt know I had. Our motto is that
together we will make a difference one
step at a time.

summer 2015

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 Womens 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

Womens 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.
Thats 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 groups 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 years
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
masters project, which examines the effects of chemotherapy on the brains of mice.
Now its the 23-year-olds time to take the spotlight,
as the 2014 Cyril Kay studentship recipient. Established
in 2003, the studentship created in Dr. Cyril M. Kays
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 whats 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 whats 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 masters 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. Its close to home and its 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 masters, 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 its 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 wouldnt 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. Its 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. Its 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. Thats 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 clients conscious and unconscious mind is open
to therapeutic suggestion. However, the exact mechanism by which hypnosis works is still unknown. One
things for sure: the hypnotist is not controlling your
mind and cant make you do something you dont 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

SmartEats food for life

On the Move
Eatingwellatworkisamatterofplanning
aheadandchoosingtherightfoods
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 Canadas 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 dont 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


Centres 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 Mandelas concept of Ubuntu whenever theres 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
wont work well within teams should not be considered.
Once you have the right types of players in place, says Craighead,
its 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 Calgarys
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 wouldnt 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 youve 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, its 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

LETS 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

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.
Heres 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

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. Id do a couple of lines, then stop, she says. It
fit what I could do at the time. For Eckersley, this was a godsend. Shed been diagnosed
with stage three breast cancer in 2012 her second bout with cancer, as shed 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 Id 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.
Its the darkness that scares us. She also hoped it
Of course, many people Eckersley included dont 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, shes 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 Id 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 its 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
Eckersleys 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 Hodgkins 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 werent 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, hed
become increasingly bitter and angry, and needed to
find a way to reconnect with the positive person hed
been before. So he and Bonnie organized an eight-day
kayaking trip along Oregons Owyhee River, similar to
the trips theyd 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. Its 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 masters 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. Mikes 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 Mikes cancer journey and resulting
career shift, he sees its limitations. This medium is
a double-edged sword. Theres 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, thats what the couple assumed when Bonnie started a blog to keep friends
and family updated about Mikes treatment. We didnt 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 didnt 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: Its changed how people talk about illness, how health
information is disseminated, and I think its 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 persons experiences.
And anyone whether theyre tweeting on their deathbed or blogging about Daffodil Days should exercise common sense before
they post anything online. If youre considering doing it, remember
that once its out there, its 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

ven if you dont 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 its not going to be for everybody, she says. But, theres
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 thats and collaborate.
Dr. Deanna Attai, assistant clinical proShes 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. Weve had such a positive response and have witnessed the development of a We have an obligation to share knowledge it shouldnt
just be kept in the confines of a conference room.
real community.
Sharing knowledge and information is also a fundamenWhile Attai wasnt initially involved with the chats, she has brought a medical perspective to the discussions since. There are times when a physicians 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, its 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. Weve been contacted by scientists from around the world, including China, Germany
and the United States, Vasquez explains. Now were collaborating on research projects with people we wouldnt
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. Weve
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 Knights 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 thats
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 theyve 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 Knights Cabin, Belanger works with people who are, on
average, 50 years old. For this group, shes observed Facebook is a good
connecting and motivating tool. We create private Facebook groups for
people who participate in the retreats, and thats 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. Its 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.
Heres how patients can navigate the tricky world of
myths and misinformation about cancer online
BY SYDNEE BRYANT

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 doctors attention, only
to have their hopes dashed when they find out the so-called miracle cure hasnt 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. Its 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, isnt illegal. But is it
effective in treating cancer? That hasnt 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. Its 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. Theyve 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. Institutes website, cancer.gov. The website describes different cancers for both a
Theres 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- tients family in mind. Its 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 committees
ference between a website with solid information and approval. Its great information, its 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 dont cure all cancer patients and that, unfortunately for
their cancer in the time between their diagnosis and too many of our patients, we dont have effective treatments. The website also points
first clinic visit, says Mackey. Its usually triggered people to clinical trials. Its 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 dont 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 isnt 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. Its difficult if youre 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 its a reliable source with now. With open access, its becoming so you can access really good science informagood information. Theres good stuff out there and bad tion, says Caulfield. Globally, Im 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 its easier than ever for misinformation and downsides are significant and they cant 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 peoples 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], youre 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 doesnt mean that patients
The Internet is a big advance for
field. Health is a complicated isshouldnt 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 havent 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. Its 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. Thats very rare that
media Twitter, Facebook to build community. Its 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 theres 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. Ive 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, doesnt 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 dont 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. Dont throw out those
postage stamps just yet!
Heres 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 patients 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 whats
important their recovery,
and each other

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 Courtneys 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 doctors
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 youve 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 Tammys husband Geoff was
in the clutches of some devastating health problems, himself. On St. Patricks 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 Tammys
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 wasnt the most
Disney-like of beginnings, they didnt 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 were supportive of each other no matter what were 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 couldnt be there to provide their children
with the mental support theyd need. When youve got kids and grandkids and you dont
singer Sades 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 couples 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 werent going to have to tres to the odometer, parking four times each treatment
week wasnt 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 Geoffs last day of work
was when he discovered he needed open heart surgery, in of the cost of the drugs that relieve the chemos 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 wasnt enough. Without any savings to fall back on, they
ing but Im in a good place now. On long-term disability, quickly exhausted Tammys RRSPs from her time at Sobeys. As the financial and emohes still an employee receiving a paycheque, though hes 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 Tammys 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 hell 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 hes 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 werent 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. Its 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 patients 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 cant cover up-front costs. Its hard to realize
that some people are running at a deficit, and so theyve
had to say, Im sorry I know Im having chemo but I can-

not buy that drug because I dont have $20. I dont know what Im 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 theyre stretched beyond their capacity to cope, and its 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. Ive personally journeyed with people who didnt 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 Skarlickis 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. Its been a long road for the last six years, but between him and me theres 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. Theres the feeling of shock, loss, fear
and anger, and then the Cross becomes a safe place of nurturing, and then theyre let go,
back into their community, and its both scary and a relief at the same time. Youre never
the same person after such a life-changing experience.
But for Geoff and Tammy, there is consistency. Its 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. Weve seen some suffering ... we know whatever may come, we can get through
it as if its 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 SAMUS SMYTH

ILLUSTRATION BY HEFF OREILLEY

ver the past 40 years, weve 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 dont register as frequently on our
cancer, theres 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 doesnt throughout their diagnosis, treatment and survivorship. Its 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 Foundations 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. Theyre 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, its 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 patients 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 hes 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 patients 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 patients
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 peoples 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 cant 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 everypatients experience could soon make the cancer
body. So its 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

THATS
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

/ 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 Gardiners stepson-in-law (his partner Laura is the daughter of Gardiners husband, Sean Dunnigan).
As co-owner of Vine Arts Wine & Spirits in Calgary, Willis founded Carnival
Cocktails for Cancer in Gardiners 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 Calgarys 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 Hathaways 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. Thats
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. Shed 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 Calgarys
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. Its
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. Its 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 events
dress code included everything from casual to fabulous, including costumes.
Its 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.
Gardiners 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. Hes also very active in the Enbridge Ride
to Conquer Cancer and was one of that events 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 Gardiners 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

hef Blair Lebsack rifles through a box of fresh produce, listing off
each items place on the menu of his restaurant, RGE RD. His go-to farm,
Prairie Gardens, is late dropping off the order. Its 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 Lebsacks frenzied
inventory-taking. Often these vegetables will be picked within hours of us getting them,
she says. Its really nice, but it also means were 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 theyre 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 were
so excited for spring, he says, his eyes
trained on the delicate petals. Were
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 farms 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.
Its 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 Albertas 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. Its a refrain taken for granted by the movements 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 persons 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. Thats 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 didnt call it local food back then. He
grew up on a farm near Edmonton, and almost everything his family ate was harvested from his familys 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 restaurants meat supplier, calling it Dinner on
Range Road 135 (due to its location).

In contrast, farmer John Schneiders 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.
Schneiders heritage grain products quickly became a hit with Edmontonians
in part because of the perceived health benefits. Schneiders 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 doesnt keep up with the
latest research on the health benefits of germ oil and the nutrients that could be lost
when its taken out of the flour. But
my customers pay attention to that,
and thats what theyre 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 doesnt reach the same levels as if the
produce were left on
the vine to ripen.
Dairy and meat
products, when stored
properly, dont 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 doesnt mean much
for Kossowan. Hes more concerned with building relationships with farmers and knowing where his food
comes from.
The same is true for Lebsack and Fulton. Their
restaurants 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 restaurants 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 dont
think you can open a restaurant today and just put
a name on it and say youre serving food, he says.
The only way we could is by showing people what
were doing.

Alberta Cancer

Clinical Trials Website

Learn more at www.albertacancerclinicaltrials.ca

Tomorrows 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 its 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. Its
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 Stawnichys
Ukrainian food company in Mundare, Alberta.
Stawnichys and the Hennigs are long-time participants in the Worlds 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 theyre 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 motoDad 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 appreciahes too old to play in
marathons, but we all know hell be back, she says with tive of what the community had done for him. One of Edwards philanthropic actions
a laugh. Hes 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, dads enthusiasm rubbed off on all of us, says
three games hes played to date.
Colettes activities generated $17,000 this year Colette.
Edwards 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 Stawnichys to thrive beyond
lies 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 Worlds Longest Outdoor Hockey Game events and other fundraisers. Dad would have
remarkably, Jordyns first Cut for Cancer event, staged loved this years 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,
Im doing all I can for the cause, says Colette. Theyre they take great satisfaction seeing communities get together for the greater good never
relentless to the point of distraction, but its 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 cant 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

FINE
FINISH
After 20 years in community oncology,
Wayne Enders is getting ready to retire
BY LISA CATTERALL

/ PHOTOGRAPHY BY BUFFY GOODMAN

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 provinces 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 dont even think
they realize it. Thats 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. Its all about hope, in- evolved into this role, and found that I got my satisfaction and sense
novation and providing really good care. Its 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 theyre going to
ficulties in their lives while experiencing cancer and you know, its 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. Hes 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.

Im very much about taking advantage of


the strengths of the team members, and Im
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.
Ive 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 Albertas 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 its 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 its 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 others strengths. Im very much about
taking advantage of the strengths of the team members, and Im 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

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
Calgarys Health Sciences Centre. That made me go into the
field, because its 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 dont 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 recipients 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 thats why hes so
patients are true beneficiaries of a
due to severe instances of GVHD,
and about 25 per cent of patients will successful. Hes in it for the right reasons and bone marrow transplant meaning
they live without complication after
struggle with the disease long-term,
thats 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. Albertas 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
thats why hes so successful. Hes in it for the right reasons and thats 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 hes not working, Storek is active in his church and often goes on charity
les and the Fred Hutchinson Cancer Research Centre
trips abroad. Hes also very active in the outdoors and enjoys hiking and backpackin Seattle, before heading to the University of Calgary.
ing. Hes also a coach at the Rocky Mountain Jackrabbits Ski Club. I enjoy the fun of
Hes 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 hes 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, its very specific and it
ic or technical problem, he remembers a paper from
changes fast, and it seems that hes 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, theyll 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 its this part of the work thats 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 doesnt 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 Im 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 fracIm happiest when: I can make someone happy.
tion of patients who are true beneficiaries, because its
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 Storeks
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. Hes 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 Storeks 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 Aims 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 wed do a 200kilometre ride we didnt 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 theyll 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 theres life after cancer.
So many cancer survivors leading full, healthy
lives, and thats incredibly important to know.
myleapmagazine.ca

TITLE PARTNER

Together were creating


MORE MOMENTS
for Albertans facing cancer

albertacancer.ca/moremoments

S-ar putea să vă placă și