Leap Fall 2012

GET OUT
ALBERTA TRAILS WERE

MADE FOR WALKING
GENE SCENE
GENETIC TESTING
FROM BOTH SIDES
PM#40020055
THE LAST CHAPTER:
PALLIATIVE CARE
THIN HELP
Research combats
muscle loss p.29
A BALM FOR
PATIENTS
Tour de
Monaco
COMING
NOW TO BOTH
For an unforgettable six hours this March,
join hundreds of women and men as they
jump, jive, dance and laugh while raising
valuable funds for breast health in Alberta.
EDMONTON
1.855.250.MOVE
REGISTER TODAY
BUSTAMOVE.CA
MARCH 2013
& CALGARY
000Leap-BustAMove-FP.indd 1 8/7/12 10:39:57 AM
Finding a way to
measure cancer pain
SENSE
OF STORY
Dignity therapy helps
patients with endings
VOLUNTEERS!
50 years at the Cross
Cancer Institute
SPECIAL
REPORT:
When care is
palliative
Enbridges top man
Al Monaco rides to
conquer cancer
into Albertas cancer-free movement
FALL 2012
Leap_Fall12_p52-01.indd 3 8/17/12 10:52:32 AM
Your support and commitment help make each of our events
a spectacular success. We could not do it without you!
Your generous support continues to promise progress in cancer research,
treatment, screening and care for those facing cancer today, in honour of
those lost to cancer, and for generations to come. Thank you for becoming
an important part of Albertas cancer-free movement.
THANK YOU
endcancer.ca
UNCOVERTHECURE.ORG
CONQUERCANCER.CA
000Leap-ThankYou-FP.indd 1 8/7/12 10:35:56 AM Leap_Fall12_p02-03.indd 2 8/17/12 10:59:28 AM
al ber tacancer f oundati on. ca fall 2012 3
FALL 2012 VOL 3 No. 2 CONTENTS
FEATURES
16 TOP JOB
Patients are connected to resources they need
via a local , and caring, social worker
32 TO BEAM OR NOT TO BEAM
Take a tour of radiation therapy
34 50 YEARS OF VOLUNTEERS
Celebrating hal f a century of the Cross Cancer
Institutes Volunteer Association
38 WHY I DONATE
An energy giants president hits the highways,
again and again, with a cause
41 WALK THIS WAY
Easy-to-access trails Albertans won t want to pass by
44 RESEARCH ROCKSTAR: IN THE ZONE
New arri val to Edmonton lab doesn t disappoint
48 DOUBLE TAKE
Genetic counselling explained from two sides:
a counsellor and a patient
DEPARTMENTS
4 OUR LEAP
A message from the Alberta Cancer Foundation
6 FOREFRONT
Pioneering tumour researcher, Influential
survi vor, A curing book review, Crispy kale,
Young funds, Better sleep tips + Much more
12 BODYMIND
Ethnicity can affect how cancer care is gi ven
and recei ved
13 SMART EATS
Updating the caveman diet for todays
expectations
14 ASK THE EXPERTS
How long was my colon tumour there before
I developed symptoms? My friends don t know
how to deal with my cancer; How can I make it
easier for them?
15 BEYOND CANCER
Leaps new column looks at issues in
cancer survi vorship
31 CORPORATE GIVING
Devon Canada Corporation
honours employee legacy
50 MY LEAP
Woman in action: Edna Elias celebrates Inuit health
FALL SPOTLIGHT
THE LAST CHAPTER: Palliative Care
16
44
34
ON THE COVER: Al Monaco
PHOTO: Ewan Nicholson
20 THE SENSE OF A STORY
Dignity Therapy helps terminall y ill patients
document their li ves
24 THE COST OF DYING
A heal th economist speaks up about the cost of care
26 ITS PERSONAL
Pain measured more effecti vel y for better
management
29 FIGHT THE FADE
Muscle wasting and disease-associated
malnutrition in detail
Your support and commitment help make each of our events
a spectacular success. We could not do it without you!
Your generous support continues to promise progress in cancer research,
treatment, screening and care for those facing cancer today, in honour of
those lost to cancer, and for generations to come. Thank you for becoming
an important part of Albertas cancer-free movement.
THANK YOU
endcancer.ca
UNCOVERTHECURE.ORG
CONQUERCANCER.CA
000Leap-ThankYou-FP.indd 1 8/7/12 10:35:56 AM
38
29
Leap_Fall12_p02-03.indd 3 8/20/12 1:49:45 PM
myl eapmagazi ne. ca 4 fall 2012
ALBERTA CANCER FOUNDATION
message /
TRUSTEES
John Osler
Calgary
Leslie Beard
Edmonton
Angela Boehm
Calgary
Heather Culbert
Calgary
Steven Dyck
Lethbridge
Paul Grundy
Edmonton (ex-ofcio)
Dianne Kipnes
Edmonton
Katie McLean
Calgary
John J. McDonald
Edmonton
Brent Saik
Sherwood Park
Prem Singhmar
Sherwood Park
Heather Watt
Edmonton
Vern Yu
Calgary
Myka Osinchuk, CEO
Alberta Cancer Foundation
John Osler, Chair of the Board of Trustees
Alberta Cancer Foundation
July Underwear Affairs, the Enbridge Ride to Conquer
Cancer (we both cycled in the rain in that one) and the
Shoppers Drug Mart Weekend to End Womens
Cancers. Thousands of participants raised an impres-
sive $11.3 million for cancer research, enhanced care,
prevention and screening in this province.
After careful deliberation and declining participa-
tion, we said goodbye to the
Shoppers Drug Mart Weekend
to End Womens Cancers but
feel privileged to have cheered
on these walkers for the past
eight years. What an impact they
have made. They raised more
than $45 million dollars, allow-
ing us to invest in initiatives dedicated to ending
womens cancers right here at home. The dollars
raised by these committed participants allowed us
to create an endowed research chair, purchase two
fully equipped mobile clinics offering digital mam-
mograms in rural Alberta to 25,000 women a year,
and provide nancial assistance to patients and
families in need during treatment, just to name a
few initiatives.
We hope these same committed participants con-
tinue to focus their energy on one of our many other
ways to raise money for friends, families and loved
ones right here in Alberta. Thank you for being pow-
erful partners in Albertas cancer-free movement.
In this issue of Leap magazine, we look at palliative
care, a topic that is not always easy to discuss. But part
of our job at the Alberta Cancer Foundation is to ease
the cancer journey for Albertans, no matter where they
are on their journey.
Many people think palliative care only deals with an
end-of-life scenario. It actually starts from the moment
of diagnosis and can take
any form of treatment that
concentrates on reducing
symptoms, improving quali-
ty of life and supporting
patients and their families.
Thats why the people fea-
tured in this issue occupy
such a range on the cancer spectrum.
Research has shown that palliative care and its com-
ponents are benecial to the health and well-being of
patients and families. All the components play crucial
parts within the process and enhance patients experi-
ences and improve quality of life. However, once a
patient reaches a point where treatment is no longer
warranted, palliative care becomes the focus.
As researchers learn about best practices, so will
Albertans.
While we were preparing this issue, we were also in
the middle of a busy event season at the Alberta
Cancer Foundation. Aside from a string of community
events, we hosted our challenge events in June and
Tough Topic, Necessary Discussion
Research has shown that
palliative care and its
components are benecial
to the health and well-being
of patients and families.
Enbridges incoming CEO Al Monaco (L) with Alberta Cancer Foundation
CEO Myka Osinchuk and Chair of the Board of Trustees, John Osler
Al ber ta s cancer- f ree movement fall 2012 5
albertacancer.ca
The Alberta Cancer Foundation
is more than a charityits a
movement for cancer-free lives,
today, tomorrow and forever.
Its a movement of those who know a cancer-free
future is possible and who wont settle for some day.
Its a movement of Albertans who stand with those
who have no choice but to stand up to cancer.
Its a movement of those who know something
can be done and are willing to do it.
For those facing cancer today, in honour of those
lost to cancer, and for generations to come,
we promise progress.
000LP.Manifest_1-2V_nBL.indd 1 7/26/11 3:33:09 PM
FALL VOL 3 No. 2
ALBERTA CANCER FOUNDATION
ASSOCIATE EDITOR: PHOEBE DEY
EDITORIAL ADVISORY COMMITTEE
DR. PAUL GRUNDY,
Senior Medical Director, Cancer Care
Alberta Health Services
DR. HEATHER BRYANT
Vice-President, Cancer Control
Canadian Partnership Against Cancer
DR. STEVE ROBBINS
Director, Southern Alberta Cancer Research Institute
Associate Director, Research, Alberta Health Services,
Cancer Care
CHRISTINE MCIVER
CEO, Kids Cancer Care Foundation of Alberta
VENTURE PUBLISHING INC.
PUBLISHER: RUTH KELLY
ASSOCIATE PUBLISHER: JOYCE BYRNE
EDITOR: MIFI PURVIS
ASSISTANT EDITORS: CAILYNN KLINGBEIL & MICHELLE LINDSTROM
ART DIRECTOR: CHARLES BURKE
ASSISTANT ART DIRECTOR: COLIN SPENCE
ASSOCIATE ART DIRECTOR: ANDREA DEBOER
PRODUCTION COORDINATOR: BETTY-LOU SMITH
PRODUCTION TECHNICIAN: BRENT FELZIEN
DISTRIBUTION: HEATHER MORRISON
CONTRIBUTING WRITERS: Gisele Aparacio-Hull, Deepti Babu, Tom
Cantine, Stacey Carefoot, Linda Carlson, Janine Giese-Davis, Annalise
Klingbeil, Cailynn Klingbeil, Michelle Lindstrom, Craille Maguire-Gillies,
Debbie Olsen, Scott Rollans, Karol Sekulik, Debbie Whiteld
CONTRIBUTING PHOTOGRAPHERS AND ILLUSTRATORS:
Ryan Hidson, Ewan Nicholson, Jeff Noon, Heff OReilly,
Darryl Propp, Curtis Trent
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
The information in this publication is not meant to be a substitute for professional
medical advice. Always seek advice from your physician or other qualied health
provider regarding any medical condition or treatment.
Printed in Canada by Transcontinental LGM.
Leap is printed on Forest Stewardship Council certied paper
Publications Agreement #40020055
ISSN #1923-6131
Content may not be reprinted or reproduced without permission from Alberta Cancer Foundation.
Tough Topic, Necessary Discussion
forefront /
PREVENT, TREAT, CURE
Top 10 Ways to
Improve Your Sleep
NEED HELP? To learn more about the
free program, which is held at Calgarys
Tom Baker Cancer Centre, or to see if
you qualify, call 1-877-SLEEP40 or
email icansleep@ucalgary.ca.
The very thing that may help your body heal
sleep is often more elusive for cancer patients.
Insomnia and sleep disturbances aect 30 to 50 per
cent of patients, roughly three times the general
population. Treatments such as chemotherapy,
steroids and pain medications, along with stress, can
contribute to insomnia that lasts years after
treatment, I-CAN Sleep reported in a 2011 study.
The I-CAN Sleep study, a partnership between
Alberta Health Services and the University of
Calgary, compared mindfulness-based stress
reduction to cognitive behavioural therapy for
treating insomnia among cancer patients, explains
Sheila Garland, an I-CAN Sleep co-ordinator. The
group was the rst in Canada to investigate sleep
patterns in cancer patients, leading to an eight-week
program to retrain current and former cancer
patients into getting more shuteye. Participants wear
a wrist monitor that tracks their sleeping habits for a
week and they learn relaxation and stress-reduction
techniques. The result? Some patients who slept only
two to three hours a night now sleep six or seven.
Id get home from work and crash because I had no
energy, one patient with leukemia told The Calgary
Sun. [Now] Im up to six and a half hours of sleep,
some nights seven. Thats what might be called a
dream outcome.
A Good
Nights Sleep
BY CRAILLE MAGUIRE-GILLIES
W.C. Fields once said that sleep is the best cure for insomnia.
If only it were that easy. But there are a few tricks and techniques
to get more shuteye.
1. JUST SAY NO: To caffeine and alcohol, that is. Alcohol dehydrates
and can wake you up in the middle of the night. Caffeine, found in
everything from chocolate to cola to coffee, can affect you hours
after consumption.
2. MEDITATE: Stress can negatively impact the quality and
quantity of your sleep. Guided meditation, as part of an overall
stress reduction program, can help calm the worrying mind.
3. PRACTISE GOOD SLEEP HYGIENE: Sleep hygiene simply means
optimizing your bedroom for sleep. Keep the temperature at around 18C,
block out all light and restrict your bedroom to just sleeping and sex. Leave
your iPad in the living room.
4. FIND YOUR ZQ: Zeo Sleep Manager is a device you wear that purports
to tracks your sleep intelligence, or ZQ, by charting your nights sleep and
sending the results to your smart phone. If you track how much restorative
sleep you get, the theory goes, you can monitor and mitigate factors
affecting your sleep, such as medication, caffeine, stress and others.
5. MOVE IT: Exercising three times a week can improve the quality and
duration of your sleep, which can reduce pain. Researchers from Taipei
Medical University, Wan-Fang Hospital in Taiwan found that cancer patients
who exercised moderately improved their sleep and reduced physical pain.
6. TURN IT OFF: Follow a no screens rule after 9 p.m. The National Sleep
Foundation, in the U.S., found that many people lose sleep due to use of
electronic devices. Screens stimulate your brain when you should be
winding down before bed.
7. SLEEP LESS: Sleep restriction therapy, sometimes used for severe
insomnia, limits how long you stay in bed. The goal is to reset your sleep
drive so you spend less time tossing and turning and more time in truly
restful slumber.
8. DRINK MILK: Your mother was right. A small mug of warm
milk can help you fall asleep thanks to the amino acid
tryptophan it contains, which your body converts to
serotonin.
9. BANISH THE CLOCK: 3:01 a.m. 3:04 a.m. 3:09 a.m. Checking the time
every, say, ve minutes, is a good way to ensure youll be up all night.
10. RISE AND SHINE: Waking up at the same time every day, no matter
when you went to sleep, sets your internal clock and leads to fewer ups and
downs in your sleep routine.
P
i
c
k

u
p
y
o
u
r

c
o
p
y

t
o
d
a
y
!
Find more health in apple magazine
More health
More healthy eating
More family
More wellness
More Alberta
apple offers you and your
family everyday health and
wellness information.
Look for apple at 1,800 locations across Alberta.
Visit applemag.ca for more
details and exclusive stories.
000Leap-Apple-1_2H.indd 1 8/7/12 12:32:42 PM
Review: The Cure for Everything! Untangling the Twisted
Messages About Health, Fitness and Happiness by Timothy
Cauleld. Vintage, 256 pages, $32.
Every day we are showered with advice about our health, writes
Timothy Cauleld, a University of Alberta law professor and
Canada Research Chair in Health Law and Policy. We are told
what to eat. We are told what not to eat. We are told to cleanse. We
are told to take supplements. We are told to stretch. We are told to
take pharmaceuticals. We are told to avoid pharmaceuticals. We
are told to get our meridians centred. We are told to get healthy,
damn it! Cauleld believes this tsunami of information is often
confusing, sometimes misleading and frequently inaccurate.
To remedy the confusion, this self-professed exercise nut and
health geek offers himself up as guinea pig to investigate the truth
behind the health claims about diet, exercise, pharmaceuticals
and alternative medicine. Cauleld meets a Hollywood trainer,
interviews countless experts and embarks on a punishing diet. The
goal: to untangle the messages, the spin, and the hidden agendas.
We live in a sea of (purportedly) science-based health
information, he writes. What are we to do, really, with all this
A Cure for What Ails
information? Can we
actually use it to live a
healthier life?
Turns out, the cure for
everything is obvious,
but difcult to execute:
eat moderately,
exercise regularly, and
question the agenda
behind every product
and diet and health
claim. Above all,
look for science-
based, independent
data. For instance, many of the
studies in leading medical journals are inuenced by
big pharma. While you wont literally nd a cure for everything,
this skeptics guide to healthy living is a good reminder that we
are what we eat (and what we dont eat), and that theres no
shortcut to good health.
Healthy eating includes healthy snacking. Store-bought treats are often high in sugar, salt and additives.
Here are a few easy recipes to replace your snack-aisle favourites.
Instead of that: Potato chips
Try this: Roasted chickpeas
Chickpeas are high in bre, low in fat and packed with avour. Keep a container in the fridge.
Pre-heat oven to 375F. Drain two cans of chickpeas (also known as garbanzo beans), coat with
canola or olive oil and spread on a baking sheet. Roast for 30 to 40 minutes, turning chickpeas
with a spatula every few minutes for even baking. When nished, add a pinch of sea salt, smoked
paprika (optional) and cracked black pepper.
T
R
Y

I
T
T
O
D
A
Y
Instead of that: Potato chips
Try this: Crispy kale chips
Delicious, nutritious kale is high in vitamins A, C, K and B, along with iron and calcium.
As a member of the cabbage family, it can help reduce inammation and potentially suppress
the growth of cancer cells. Crisping kale leaves in the oven is a quick, low-calorie way to satisfy
the munchies.
Pre-heat oven to 250F. Wash kale leaves and cut away from stem (which is bitter). Pat dry
with a paper towel and lightly coat with canola or olive oil. Bake on lined baking sheet until
crisp (roughly 20 minutes), turning over leaves halfway through. Serve immediately.
Instead of that: Candy bars and cookies
Try this: Homemade granola bars
Portable and packed with nutrients, these lunchbox staples are a healthy alternative to sugary,
high-fat confections. Based on a version by Barefoot Contessa star Ina Garten, they take a bit of
prep, but you can double the batch and store them in the freezer.
Pre-heat oven to 350F. Mix together 2 cups oatmeal, 1 cup almonds, cup unsweetened
coconut akes and cup wheat germ. Toast mixture in oven for 10 minutes, occasionally stirring.
Lower oven temperature to 300F. Meanwhile, melt 3 Tbsp unsalted butter with cup honey and
cup brown sugar (optional). In a large bowl, add 1 Tbsp cinnamon, tsp sea salt and 1 cups
dried, unsweetened fruit to the oatmeal. Pour melted butter over oatmeal until well coated.
Press mixture into glass brownie pan and bake for 25 minutes. Cool and cut into squares.
Healthy Homemade Snacks
Little Donor
Tristin Chang, 11, grew his hair for three years before shaving
his head in front of his entire school. With the help of his mom,
Dawn, they sold pins and solicited donations, raising $1,037,
earmarked for research for the Alberta Cancer Foundation.
Read about more young fundraisers in the December issue of
Leap. If you are a kid who has raised money for cancer research
and treatment in Alberta, we want to hear from you.
Send your stories to letters@myleapmagazine.ca.
Dorothea Klein, Cancer Survivor
and Tomorrow Project Ambassador
Half of all Albertans will develop cancer in their lifetime...
1
...I am one of them.
The Tomorrow Project, the largest research study
ever undertaken in Alberta, needs your help!
Join 23,000 of your fellow Albertans as they help
researchers fnd out why some people get cancer
and others do not.
One hour is all it takes! Call today or visit our
website, and contribute to a life-changing study.
www.in4tomorrow.ca 1-877-919-9292
Albertans studying the connection
between lifestyle and cancer
In Partnership With
The Tomorrow
Project
1
Cancer Surveillance: 2008 Report on Cancer Statistics in Alberta. Edmonton: Surveillance and Health Status
Assessment, Alberta Health Services, 2010.
Will You Lend A Hand?
Casinos for cancer thats the idea Korean War veteran Jean Pierre
Van Eck had about a decade ago. Born in the Netherlands, Van Eck
moved to Canada in the 1950s and eventually became president of the
Edmonton chapter of the Korean Veterans of Canada Association. A few
years ago, he noticed that many of the associations old-timers were
developing cancer. Casino fundraising nights, held a couple times a year
in Edmonton, have raised about $40,000 for cancer research and care.
But their charity isnt limited to oncology: other recipients of funds
include The Edmonton Food Bank and the Stollery Childrens Hospital.
The payoff for Van Eck is obvious: Im always glad we can give away the
money we raise to people who really need it.
Korean Vets
Raise Money
for Cancer
British-born Dr. Nigel Brockton has a lot of
titles. Hes a long-time survivor of Ewings
sarcoma and a research scientist at Alberta
Health Services, not to mention a former
competitive skier who placed rst at the FIS
World Cup. Now, the Calgarian can add to his list
of accomplishments: he has just been named
one of Alberta Venture magazines 50 most
inuential people in the province, thanks to his
research on lifestyle changes cancer patients
can make to increase their survival chances.
Speaking to Leap in 2011, Brockton said, Im
interested in things patients can do that are not
part of their treatment exercise, vitamin D,
anti-inammatory drugs, having a healthy body
weight (that) might reduce the risk of the
spread of cancer.
Man of
Inuence
A pioneering brain tumour researcher in Calgary is at the lead of a
new $8.2-million drug discovery project. Thanks to funds from the the Alberta
Cancer Foundation, Alberta Innovates - Health Solutions, The Terry Fox
Foundation (and other partners), the University of Calgarys Dr. Gregory
Cairncross and a team of top researchers across Canada will look at
glioblastoma, an aggressive and often fatal brain disease that aects 2,600
Canadians. This is a disease where survival is measured in months, says Dr.
Cairncross, who adds that the projects multidisciplinary team has an
opportunity to develop promising drug therapies. The groups ve- to 10-year
objective includes better control of tumours and a longer, high-quality life for
patients. We have a chance to make a dierence.
Brain
POWER
Al berta s cancer- f ree movement fall 2012 11
Core Strength
This easy knee lift strengthens your core
while keeping your spine upright and reduces
strain on your neck and upper back. Plus, you can
do it at your desk.
BASIC VERSION:
Sit straight on a chair with your knees positioned
over your ankles. (The rule of good posture and
alignment is head over shoulders, shoulders over
hips, knees over ankles.)
Slowly lift one knee, engaging your core
muscles while keeping the rest of your body
straight and stable.
Aim for eight to 10 reps on each side.
ADVANCED VERSION:
This version also strengthens muscles in
your quads.
With your back against a wall, bend your knees
and lower slightly in a half squat as you engage
your core muscles.
Your back should slide down the wall to provide
extra support.
Repeat eight to 10 times.
The only part of you that the Smartphone game Angry
Birds will exercise is your index nger. But there are some terric
free or cheap apps out there that will help you track and improve
your eating and exercise habits. Here are a few favourites.
Gym Buddies
iFitness
.99
With more than 200 exercises,
100 video and 12 workout
routines, this handy app
also functions as an
exercise planner, letting
you chart every leg
squat and sit-up.
My Fitness Pal
Free
Maintaining a healthy weight is as much
about calories consumed as expended.
This app a Wired magazine favourite
also includes 300+ exercises and a
scanner so you can upload nutritional
info on packaged foods.
Bonus: It works ofine.
Relax & Rest
Guided Meditations
.99
Part of a series from Meditation Oasis,
this app offers ve-minute, 13-minute
and 24-minute guided meditations.
Want to hear more nature music? You
can turn up those sounds and turn down
the meditation narrator, or vice versa.
MAKING POSITIVE CONNECTIONS
bodymind /
and sound like the majority, utilization of health-care services seemed to be lower. That
is, they may not take advantage of the services that are available to them, which can lead
to more adverse health outcomes.
And foreign-born people who do not speak English as a first-language (whose
English skills may be limited or even procient) are more likely to report emotional
distress related to a cancer diagnosis than other groups. Symptoms such as pain,
fatigue, anxiety, depression and sleep deprivation are more common for visible
minorities than for Canadians of European descent. This
is even the case for those who are Canadian-born visible
minorities and speak perfect English. Literature has, for
the most part, considered this group as the cultural bridge
between their immigrant parents and the host society, but
they seem to be suffering just as much when diagnosed
with cancer as their immigrant family members.
Unfortunately, foreign-born visible minorities are less likely to be satised with their
cancer care as well. This may mean they will wait longer before seeking care, and may
also have poorer outcomes from their treatment. A sad and startling statistic we noted
recently is that visible minorities, with English as a second language, are more likely
to have suicidal thoughts after a cancer diagnosis than the majority population.
So what does all this mean for Mary? She looks different than most Canadians,
although she sounds pretty much the same. Just by virtue of that, she may be vulnerable
for worse outcomes, more distress and more symptoms, such as pain and fatigue. Now
that we have uncovered some of these disparities, the challenge is how to address them
so that all Canadians, regardless of how they look or sound, not only have access to, but
actually receive optimal cancer care. Dr. Thomas and his team continue to investigate
ethnic disparities in cancer care across Alberta to overcome this challenge.
Dr. Linda Carlson (lindacarlson.ca) is the Enbridge Chair in Psychosocial Oncology at
the University of Calgary and a clinical psychologist at the Tom Baker Cancer Centre.
Ethnicity data can help
examine disparities in the
delivery of health care.
Marys mother is Polish and her father is from
Nigeria; she was born in France and has lived in
Canada since she was six. What does she call herself?
Is she Polish-Nigerian? Or maybe just Canadian? What
does she look like, and how does she sound on the
phone? How many languages does she speak? More
importantly, how will all of this impact the care she
receives if she is diagnosed with cancer this year?
Canadians tend to be averse to labelling people
based on ethnic or cultural characteristics, and while
this is generally commendable, there are certain social
contexts where there may be advantages to categorizing
people on some measure of ethnicity. In health care, for
example, categorizing patients by ethnic background
allows health-care providers to answer critical questions,
such as whether individuals from certain ethnic groups
are at higher risk of developing diseases, or whether
others are marginalized by the health system. In other
words, ethnicity data can help us examine disparities in
the delivery of health care.
While Statistics Canada doesnt collect such data,
the United States does classify all individuals into one
of ve broad groups: White American, Black American,
Hispanic/Latino, Asian/ Pacific Islander and Native.
This allows researchers to
access health statistics that
arent available in Canada.
For example, the American
Cancer Society 2012 annual
Facts and Figures report notes
that the death rate for cancer among African-American
males is 33 per cent higher than among white males
and for African-American females, it is 16 per cent higher
than among white females. Such information permits
targeted interventions.
Currently, foreign-born Canadians represent almost
one in ve of the total population. We were interested
in potential disparities in health care at the Tom Baker
Cancer Centre in Calgary, and since ethnicity data
wasnt available, we conducted a series of studies led
by Dr. Bejoy Thomas to investigate this. We developed a
framework that classies people into quadrants based on
whether they look and sound like the majority population
(European-Canadian native English speakers). We
found that although access to health care among visible
minority populations was comparable to those who look
BY LINDA E. CARLSON
Colour Blind Care
myl eapmagazi ne. ca
The connection between ethnicity
with cancer treatment and recovery
FOOD FOR LIFE
cookingsmart /
You may have heard of the Paleo-type diet some call
it eating like a caveman. Versions of this diet describe
the way our ancestors ate in the Paleolithic era, about
10,000 years ago. Supporters say our bodies evolved
with a hunting-and-gathering diet and that we are
physiologically more suited to it than a post-industrial
diet, which is, evolutionarily speaking, very new.
Paleo-type diets mean eating only foods that we
once needed to hunt (meat and sh) or gather (eggs,
tree nuts, vegetables and fruit). Dairy foods, grains,
sugar, legumes (beans), potatoes and oils are not
included because these newcomers appeared after
the agricultural and industrial revolutions.
Supporters of the Paleo-type diet say the modern
Western diet is at the root of many diseases, including
obesity, diabetes, heart disease, depression and
infertility. They say that our ancestors didnt suffer from
chronic diseases as we do now. Supporters of paleo-
type diets also claim that eating what they call real
foods can reduce pain, increase energy and improve
cholesterol levels.
Can switching to this way of eating match
the hype?
Our ancestors simply didnt live as long as we live now.
They typically died long before old or even middle
age when diseases such as diabetes and heart disease
typically start appearing. To say that their way of eating
prevents disease is oversimplication at best.
Our ancestors lived very different lives before the
industrial revolution. They ate what didnt eat them,
working very hard physically to catch or gather food.
Survival guaranteed physical fitness, which in turn
was a requirement, not an option. And food surpluses
didnt exist before agriculture, so people ate only what
was available locally, always on the lookout for their
next meal.
Many diets claim to cure illness or disease. Chronic
conditions are caused by many factors not just dietary
intake. Obesity is a condition that is inuenced not only
by how much we eat, but also by other factors, such as
genetics, sleep, stress and physical activity.
Diets with strict guidelines of what to eat and not to
eat make it challenging to succeed. Often, being very
restrictive leads to all-or-nothing thinking, meaning
that one must follow a diet 100 per cent of the time, or
not at all. This mindset is common among those who follow restrictive or weight-
loss diets. Its not a helpful way to think, as people often report feeling like failures
if they dont achieve their diet goals.
Some recommendations of the Paleo-style of eating are not supported by
research. These diets emphasize protein from meat and this may be a problem.
Protein is necessary for good health. However, to reduce the risk of cancer, we
recommend limiting red meat intake to less than 500 grams (18 ounces) per week
with very little of this amount from processed meat. (Processed meats are smoked,
cured, salted or chemically preserved. Think ham, bacon, pastrami and salami.)
Paleo-type diets also recommend the removal of all grains from the diet. But
evidence supports use of whole grains playing an important role in reducing the risk
of certain diseases, such as heart disease.
Are there any helpful messages from the Paleo or caveman way of eating?
Certainly. Having seven to 10 (or more) daily servings of vegetables and fruit can help
with weight management and cancer risk reduction. Eliminating added sugar may
be ideal, but impractical for most people. Reducing added sugar or serving sizes of
foods containing it is a great place to start and likely a more achievable goal.
If youre looking to change the way youre eating, start by setting goals that are
realistic for you and your lifestyle. Do you want to eat more vegetables and fruit?
Start by stocking for fridge and freezer with fresh and frozen vegetables. If you
make them available, you are more likely to eat them. Plan a healthy plate. Fill half
your plate with vegetables and fruit, and divide the other half equally between meat
(or a meat alternative) and whole grains. If you want to reduce sugar intake, think
about your next birthday celebration and start by saying Ill take half a slice please.
And it might be benecial to copy our ancestors by increasing our overall activity
level, too. Resolving to eat healthier is always a great idea, and taking small steps
can evolve into lasting lifestyle changes.
Karol Sekulic is a registered dietitian with Alberta Health Services who has expertise and
interest in the areas of weight management, nutrition and communications.
BY KAROL SEKULIC
A New Evolution
Our bodies evolved to a hunter-gatherer diet.
Should we be eating like cavemen?
YOU WANT ANSWERS
A specialist answers a question about colon cancer.
Plus, tips to help your friends when theyre having
a tough time coping with your cancer
Its very hard to answer with condence. Colon cancers typically start
as benign polyps, small lumps of non-cancerous tissue extruding into
your intestine. Over time the polyps become cancerous. In many cases,
although not all, the process for a benign polyp to become an invasive
cancer can take a year, or even much longer, says Dr. Jay Easaw, medical
oncologist at the Tom Baker Cancer Centre. Some patients develop
symptoms from their cancer immediately. These can include pain,
weight loss, nausea and blood in the stool, to name a few. Other patients
may initially have no symptoms. In such situations, patients may develop
symptoms only after the cancer has become quite large or has spread to
other parts of the body.
Easaw says that, rather than wondering about how long the tumour
was there, now that youve been treated for colon cancer its more
important to adhere to your followup appointments. In recent years,
many colon cancer patients in Alberta were recommended for blood
tests every three months, a CT scan at one and three years, and lifelong
colonoscopies. But a study to see how people were adhering to these
recommendations found only 7.2 per cent of patients were getting the
suggested tests. Pharmaceutical leader Sano Canada partnered with
the Alberta Cancer Foundation for a colorectal cancer surveillance
research program, with grants to support the research over the next
three years. The goal of the program is to reach 90 per cent adherence
to followup guidelines with an aim to capture recurrences when a cure
is still possible.
How long was my colon
tumour there before I
developed symptoms?
asktheexpert /
A RESOURCE FOR YOU
A cancer diagnosis can change your relationships, says Dr. Guy
Pelletier, clinical psychologist at the Tom Baker Cancer Centre.
When you are diagnosed with this type of disease, you realize
who can help you and who might not be able to. Its disappointing,
but some people arent able to cope with a sick person. It may
require you to distance yourself from them for a while.
For those who want to help, but have trouble knowing where to
start, you can instigate a conversation with, Gee, its great when
you come by. I know its difcult sometimes, I really appreciate
the support. Theyre worried about you and sometimes if you
acknowledge that fact, it may be an ice-breaker that revamps the
relationship.
Pelletier says its best to lower your expectations of loved ones
because theyre likely overwhelmed by the high expectations
theyve placed on themselves. Some friends or family members
think they should be making grand gestures and huge offering
of help. They feel they should be doing something for their
sick friend, Pelletier says, They ask, What am I doing? I should
be able to do something! Can I clean your house? Can I take you
to Mexico?
Take the pressure off your friends by telling them you dont
need a grand gesture, that a visit, just to chat, is enough. Pelletier
says its more about being there for the patient that matters.
If you have something concrete a person can help with (for
example, shovel the sidewalks or mow the lawn), by all means,
make the suggestion and see how your friend or family member
responds, he says. But if you dont really have anything that
you want them to do, say, Id enjoy it if you came by and we had
a cup of tea. Its great to see people when you cant get out of the
house much.
There are various professionally-led cancer support groups to
join, too. Cancer centres across the province have psychosocial
resources available to support you and help you understand the
changing nature of your friendships.
I feel like my friends dont know how
to deal with my cancer. How can I
make it easier for them?
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.
STORIES OF SURVIVORSHIP
beyondcancer /
WATCH IT! Visit CancerBridges.ca to watch our short Myths of
Survivorship videos to hear researchers boil down their years
of research so you can take action. If you cant access our web
features, call (403) 923-8032 and well send you a DVD.
Sometimes you can just feel so I mean, I can feel
so alone, she told me. Just so terribly alone and des-
olate. She was a breast cancer patient but, beyond
that, she was depressed. Depression is hard for people
to acknowledge, and hard for people to hear about.
Fortunately, this patient was taking steps to address it,
which boded well for her cancer survivorship.
Long-term depression can have some pretty nega-
tive consequences. It can make you less motivated to
exercise, to eat healthy, or to do what your doctor
advises. It can lead you to
withdraw from friends and
family. Long-term depression
can diminish your bodys abili-
ty to fight cancer, decrease
your immune function and increase inflammation.
Many new studies nd that depression predicts earlier
death from cancer, so its important to learn the symp-
toms of depression (see Is This You?), take a good
look at yourself, and seek help if you recognize your
experiences.
When people receive a cancer diagnosis, they often
feel depressed. The possibility of a shortened life or
loss of function is difcult to contemplate, and leads
to anxiety, sadness, and anger. These feelings are nor-
mal and its best to allow yourself time to talk about
them with friends, family, spiritual-care advisors, and
other cancer patients. You can access many services
through Alberta Health Services Psychosocial
Resources and community-based organizations.
Our website, CancerBridges.ca, has a calendar with
support opportunities across Alberta, and educational
videos (for example, Help to deal with difficult
emotions). We also offer monthly classes.
Researchers nd that experiencing strong feelings
at diagnosis doesnt put you at risk for negative conse-
quences, but helps you to adjust and prepare for your
journey. In fact, refusing to acknowledge and discuss
these strong feelings is a negative predictor. Talking
openly helps you process, so you can cope well with
treatment and survivorship.
But some people go on to experience increasing or
chronic depression. This can have a negative impact
on your immune system and make it more difcult for
your body to fight cancer and heal from treatments.
Studies are demonstrating that deeper and longer
depression can be dangerous in ways that undermine effective treatment, coping,
and survivorship. In a study my colleagues and I published last year, we followed a
group of women with metastatic breast cancer for 14 years and found those who
decreased their depression over their rst year lived longer, on average 54 months
compared with 25 months. This is hopeful because there are many ways to treat
depression.
When you experience depression its difcult to get yourself moving toward feel-
ing better. Friends or family can be important, prompting you to seek help, such as
a support group, a therapist, and medication for depression. Friends can become
your exercise buddies, and help you engage socially. These are effective strategies
for depression symptoms. This is not simply thinking posi-
tive. And, in fact, pretending you are fine can increase
depression if it keeps you from talking about feelings.
Survivorship and survival require feet on the ground,
pushing through difficulties and physical challenges, and
rising to emotional challenges. The most important message is to recognize
depression, understand that strong feelings at diagnosis are normal, and move for-
ward to make sure that chronic depression does not shortchange your future.
BY JANINE GIESE-DAVIS
A HEALTHIER
TOMORROW
Cancer survivorship requires you to cope early with the
strong feelings, so they dont morph into depression
IS THIS YOU?
Anger and sadness on diagnosis is normal. Long-lasting depression is a
disease too, and you should deal with it before it impacts your cancer
treatment. The rst step is recognizing the symptoms:
Agitation, restlessness, and irritability
Dramatic change in appetite, often with weight gain or loss
Extreme difculty concentrating
Fatigue and lack of energy
Feelings of hopelessness and helplessness
Feelings of anger and discouragement
Feelings of worthlessness, self-hate, and inappropriate guilt
Inactivity and withdrawal from activities; a loss of interest or pleasure in
activities you used to enjoy (such as sex, socializing, and hobbies)
Thoughts of death or suicide
Trouble sleeping or excessive sleeping
Greater use of alcohol or drugs to cope with distress
Strong feelings are normal.
Allow yourself time to talk
about them.
FRONT LINE CARE: Medicine Hats Mark Sloan,
a social worker, takes cues from patients. He never
stops learning.
Top Job
BY CAILYNN KLINGBEIL / PHOTOS BY JEFF NOON
For more than 20 years, social worker
Mark Sloan has connected cancer patients
in Medicine Hat with support they need
Social
A
few weeks ago Mark Sloan was sitting at his desk, in the
Margery E. Yuill Cancer Centre, when a young man approached
the doorway of his o ce.
I looked up and he said, Is that you, Mark? and I said yes. I thought he
looked familiar but I couldnt put a name to him, says Sloan, a social worker
at the cancer centre located in the Medicine Hat Regional Hospital.
The man explained that the last time he saw Sloan was more than 15 years
ago, back when the man was seven years old and his father was dying of
cancer. Sloan had worked with the mans family during the di cult time,
connecting them with support and available resources.
He came to tell me his wife was in the hospital having a baby and he
wanted to bring the baby by to show me, Sloan says.
A
LIFE
18 fall 2012 myl eapmagazi ne. ca
As the sole social worker at Medicine Hats cancer
centre for the past 22 years, Sloan has plenty of stories to
share. He has formed many connections in the community
over the years and its common for family members or
former patients to stop by and say hello, letting Sloan
know how theyve managed after a loved ones death.
Sloan says these moments are rewarding, the type of
thing that keeps him going in a job that, by any outsiders
estimation, is not easy. (Sloan will only go so far as to
call it challenging at times.) With a caseload that runs
between 50 and 60 a month, Sloan supports cancer
patients and their families in any way he can. I help
mobilize whatever resources I can to make that journey a
better one for them, he says.
Patients are referred to Sloan by physicians, other
health-care providers or family members. The referral
can come from any direction, He says. His long-standing
role in the community also results in word-of-mouth
referrals, as family members of former patients tell others
about Sloan. Sometimes, new patients are the children
of former patients; people who were once caregivers
to a parent with cancer now face a cancer diagnosis of
their own.
The thought of watching cancer up close, as part of the
workday, might seem discouraging to most people. Sloan
chooses to focus instead on how he can help mitigate its
eects. Im trying to ensure that patients have access to
the best possible resources as they go through treatment
and to try and help alleviate the stressors that come.
We can never eliminate all the stressors, thats not
possible, but my job is to make that experience better for
them, Sloan says.
Financial obstacles are a big challenge, as cancer
patients may have to leave their job or take a leave
in order to undergo treatment, which comes at a
signicant cost. In such cases Sloan connects patients
to resources, such as the Patient Financial Assistance
Program, which is funded by the Alberta Cancer
Foundation. The short-term support program helps
families focus on recovery, instead of how to pay for
medications. Alongside other social workers at Albertas
cancer centres, Sloan screens patients for eligibility to the
program and then administers support to patients who
meet the programs criteria.
If theyve lost their job or are having to take a leave
of absence from work, its making sure that theyre
connecting to the resources they may be entitled to,
whether its through income support or unemployment
insurance, Sloan says.
Another obstacle patients at the Margery E. Yuill
Cancer Centre face is that they have to travel outside
Medicine Hat to receive radiation treatment, as the centre
doesnt have such facilities. Sloan, who says its a problem
shared by smaller centres across Alberta, helps patients
book accommodation and transportation. (A radiation
therapy centre in Lethbridge treated its rst patient in
June 2010, and Red Deer and Grande Prairie are next on
the list for radiation equipment.)
LONG SERVICE: Sloan has worked in cancer care
for more than 22 years.
Top Job
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The other challenge is helping family members who
are feeling most helpless in supporting their loved one
as they go through this cancer experience, Sloan says,
which can sometimes be a horrendous journey.
Sloan helps by focusing on the people involved. The
connections he builds with patients and their families,
he says, is what keeps him going in tough situations. Its
challenging but its also
rewarding. You have to
look not only at what
youre able to give, but
what you get back from
the patient. Thats what
allows me to continue to do what I do day after day, year
after year. If it wasnt for the patients, I wouldnt be here.
As the only social worker at the cancer centre, one might
expect Sloan to feel isolated in his work. Not so, he says,
noting the exceptionally good nursing team at the cancer
centre helps him daily. I consider them my colleagues
and am able to collaborate and debrief with them. Thats
essential, he says. You cant do it as one person.
The nursing team is equally appreciative of Sloan.
Hes a very valuable asset that we could not do without,
says Suzie Penrod, nurse manager at the Margery E. Yuill
Cancer Centre.
Penrod has worked with Sloan for 22 years and describes him as an advocate for
patients. He is always educating himself to see whats out there for patients, and the
types of things we might be able to bring to the community to help on the support side,
Penrod says. He has a lot of really good ideas.
Sloan also relies on the connections hes made over the years with social workers
stationed in other units at the Medicine Hat Regional Hospital and cancer centres
throughout the province. Sloans career started when he was rst hired to work at the
Medicine Hat Regional Hospital as an adult oncology
palliative care social worker. Six years later, in 1996, he
started worked exclusively at the cancer centre, where
hes been ever since.
Sloans desire to be a social worker in a hospital
setting was spurred by his experience as a teenager
receiving support from a social worker. He was eager to give back in the same way he
had received.
When I was 15, turning 16, I had a colloid cyst in the third ventricle of my brain,
Sloan says. He spent weeks in the hospital after surgery, which saw doctors remove the
toonie-sized cyst. That involvement with social workers at the Foothills Hospital many
years ago really sparked my interest, he says.
To this day, its the frontline work the sort of care he once received that still excites
Sloan. I thoroughly enjoy the patient contact, he says. I truly believe in the philosophy
of being a companion to those patients. Theyre the experts in what theyre going
through and what theyre experiencing and what their challenges are, and Im someone
who may have some good knowledge about what the resources are, but they are the ones
that teach me what they need.
Watching cancer up close might seem
discouraging, but Sloan focuses
instead on helping.
The Last Chapter: PALLIATIVE CARE
A therapy program developed in
Canada lets terminally ill patients
tell the narrative of their lives,
in their own words
was always fooling around with a rope, said Barry Edge, who was raised
near Cochrane, Alberta. His father won the Calgary Stampede four times (twice
in bareback riding and twice in bull riding) and Edge was only 16 when he started
competitive rodeo. My dad rode right up until his dying day. I guess thats where I got
the cowboy in me. In 1976, Edge and his wife, Linda, bought a ranch in Rimbey. We
ranched all week to be able to get away to a rodeo on the weekend, he said. They were
married 36 years.
These memories and others appear in a four-page document in Edges own words
that he completed shortly before his death from stomach cancer in November, 2010.
It was part of a program called dignity therapy, developed by Manitoba psychiatrist
Dr. Harvey Max Chochinov to help terminally ill patients create records of their lives.
Transcribed from interviews and written in the rst person, then edited in conjunction
with the patient, the result is a document meant to keep a loved ones voice alive. Its
about bringing important things back into perspective at the end of life so they not only
remember who they are as a person but to convey that to the people they leave behind,
says Dr. Kim Adzich, Edges physician in Rimbey, Alberta.
Over one or two hour-long sessions with a doctor or spiritual care professional, the
patient answers simple but profound questions: What was most important in your life?
What are your greatest accomplishments? What have you learned about life that you
want to share? As Adzich says, If we were looking through a photo album of your life,
what pictures would we look at? The result is a mix of biography, hard-won wisdom
and the patients wishes for the future. The interview is free-owing. You go where the
patient wants to go, Adzich says. Its not tightly prescriptive.
I
BY CRAILLE MAGUIRE GILLIES / PHOTO BY DARRYL PROPP
Only 10 per cent of the population
dies suddenly. Most of us will die
from long illnesses.
The benets, says Dr. Shane Sinclair, a chaplain with
Alberta Health Services in Calgary, are two-fold: it can
help a terminally ill person in the nal weeks of life to
reect on his or her life and can help family members
grieve. You can almost hear your grandfathers voice
when you read it in the rst person, says Sinclair. The
therapy gives a patient a sense of control over the process
of dying and creates what he calls a meaningful death.
Dignity therapy can counter the helplessness
and anxiety and remind patients that life has been
worthwhile. Building on that, Sinclair says, dignity
therapy is an opportunity to speak about what mattered
most.
What does it mean to die with dignity?
How does dignity aect a patients well-being?
These were just a couple of questions researchers at
the Manitoba Palliative Care Research Unit (at the
University of Manitoba) asked back in the mid-1990s.
Led by Dr. Chochinov, researchers wanted to know
why some terminally ill patients had suicidal thoughts
and wished for a quick death while other dying patients
were able to nd serenity. At the time, the Senate of
Canadas Special Committee on Euthanasia and Assisted
Suicide was considering the legalization of euthanasia,
Sinclair explains, and it wanted to know what factors
made patients want to hasten the end of their lives.
The number one reason people gave for a hastened
death, he says, was a loss of dignity. That insight led to
the next logical question: How could health professionals
maintain or restore a terminally ill patients dignity?
In 2002, the research unit interviewed cancer patients
to determine what aected their sense of dignity.
Psychosocial elements such as anxiety about death and
dying and uncertainty about their future and treatment,
along with loss of independence and physical pain all
contributed to a loss of dignity. Dignity suers when
there is a loss of control that chips away a patients
sense of purpose. The team used
this information to develop tools,
techniques and principles such as
the ABCDs of Dignity an acronym
for attitude, behaviour, compassion
and dialogue and a questionnaire
to measure levels of dignity in palliative care patients.
Dignity therapy grew out of this research as a brief end-
of-life intervention. Physicians such as Adzich and
spiritual care professionals such as Sinclair, who works
closely with Chochinov, oer this kind of therapy.
Dignity therapy comes at a time in Canada when
health care advocates are calling for more focus on
palliative care. A New England Journal of Medicine
study of patients with terminal lung cancer, for example,
showed that those who received hospice care soon after
diagnosis were more mobile, happier and lived almost
three months longer than those who did not. (The
2010 study is called Early Palliative Care for Patients
with Metastatic Non-Small-Cell Lung Cancer.) The
Canadian Council of Integrated Healthcare cited this
study in a report it published in May called Dying with
Dignity in Canada. Deaths in Canada are expected
to increase 40 per cent each year by 2020 as the baby boom population ages, the
CCIH reported. Only 10 per cent of the population dies suddenly. Most of us will
die from long illnesses, which the CCIH says turns palliative care into a critical
issue in health care.
Within the area of palliative care, dignity therapy can address spiritual and
emotional aspects that other therapies dont touch on. One of the cornerstones is the
Dignity Model, a kind of guidebook to help health-care workers both understand
and address illness-related issues. The leading question, known as the Patient Dignity
Question, is simple but pointed: What do I need to know about you as a person to give
you the best care possible?
This was a question that Gloria Regushs health-care team at Foothills Medical
Centre, in Calgary, would have asked when they began her treatment. Regush, who is
60, was diagnosed with terminal cancer on March 12, 2012. One week later, surgeons
removed a tumour the size of a small orange from her brain. Surgeons came into my
room and told me that my family and I were
going to meet the people who would deal
with me from this point forward, she says,
in a bright voice worn with fatigue. We
met everybody: pharmacists, the radiation
oncologist, the chemo oncologist, and
Shane. This is the same Shane Sinclair who works with Chochinov and is included as a
spiritual care professional.
Regush, a practising Catholic, saw this as one piece of the spiritual puzzle. I have
other spiritual things I do, she says. I pray and go to church. But this is spiritual
because it makes me think about things that are important to me. Because it is non-
denominational, chaplains such as Shane Sinclair can cross spiritual borders. Its a
way we can address the universal aspects of what it means to be a human being, he
says. It provides a universal language for entering that landscape.
Not prone to self-scrutiny, Regush knew it would be an opportunity to create a story
through which her grandchildren 13, 6 and 1 could remember her. Im a young
grandma, she says. Im only 60! And in all likelihood Im not going to live to dance at
their weddings. So how can I let them know what kind of person I am or was?
Regush reects on her experience with dignity therapy only a few days after her rst
session with Sinclair. She oscillates between calm contemplation and an unspoken
sadness at what she might miss. Theres nothing more important than my family, she
says more than once. Since my diagnosis people have said, You have such a positive
attitude. But what am I going to do? Sitting at home and crying the blues is not me. Im
By leaving a gift in your will, you have
the chance to tell your story and show
what is important to you.
Our donors have been touched by cancer.
But with thoughtful estate planning, they
have been able to provide for their family
frst and ensure progress in cancer research,
treatment, screening and care for future
generations of Albertans. It could be the
most important gift of all.
Please consider leaving a gift in your
will to the Alberta Cancer Foundation.
To learn more, please contact:
Derek Michael
Gift Planning Specialist
780 643 4662, 1 866 412 2222
derek.michael@albertacancerfoundation.ca
albertacancer.ca/planned-giving
How do you want to celebrate your life?
albertacancer.ca
:
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Dignity therapy comes at a time when
health-care advocates call for more
focus on palliative care.
about family and relationships. So I want to do whatever
I can to share that. Dignity therapy is not a proxy for
psychoanalysis. Patients are encouraged to record in
their own words what is most important to them, rather
than question their motivations or analyze their past.
Not all experiences are as positive. Linda Edge
describes the process as painful and, two years after the
death of her husband Barry, she
has not read the document he
produced. Barry was having a
hard time vocalizing anything
and I could not put into words
what I was thinking, she says.
Putting details about his life down on paper was not
easy when we knew he was not going to be around for
much longer. Anyway, Linda says the ranch where
they shared a lifetime together has provided her an apt
record of Barrys accomplishments. Every day, on our
ranch, we see what he has done. And while she cannot
predict how she would feel if she were the one with a
terminal illness, she says, at this point, I am sure my
family knows how I feel, knows my accomplishments,
and will be able to remember me without having to
read it.
Though dignity therapy is not a one-size-fts-
all treatment, the study Dignity Therapy: A Novel
Psychotherapeutic Intervention for Patients Near the
End of Life found that its efectiveness is encouraging.
Published in the Journal of Clinical Oncology, the 2005 study by Chochinov and
partners reported that more than three- quarters of participants said dignity therapy
increased their sense of dignity, while 67 per cent said it heightened their sense of
meaning. Families also found the program mostly positive: 95 per cent believed
it helped their loved ones and more than two-thirds said the dignity therapy text
comforted them in their grief.
Sinclair believes it will become a common part of end-of-life care in the years
to come. We know that [many] cancer
patients, particularly those who are at the
end of their treatment, want to have these
types of conversations, Sinclair said. But
sometimes I think that because cancer is
characterized as a fght, a disease to battle,
these conversations dont occur as often as some patients would like. He says that if
health-care providers proactively address end-of-life issues, the patients quality of
life will improve. In some sense its the white elephant in the room. Dignity therapy is
a way of addressing the white elephant.
Regush agrees that the therapy session was difcult. There are bits and pieces that
I didnt lay on the table. Still, a few days afterwards, she encourages other terminally
ill patients to seek out dignity therapy. This is a chance to look at a spiritual part of my
life. If were talking about comprehensive, whole-person care, this is wonderful.
Her willingness to complete the interview with Sinclair might be rooted in a recent
life event. Regushs father died while she was recovering from brain surgery last spring.
A few years earlier, on a visit to his house in Vancouver, she interviewed her father
about his life. He told her about growing up in Nowhereville, Saskatchewan and
about his life before she was born. Regush sent the transcript of the conversation to
her sister, who used stories and details from it in their fathers eulogy.
As Regush recounts the story, she sounds tired, but happy. It was wonderful.
24 fall 2012
myl eapmagazi ne. ca
Health-care spending is not simply
about keeping people alive, but about
maintaining as much as possible a
high quality of life.
fall 2012 25 Al berta s cancer- f ree movement
Its tricky to talk about the rising cost of public
health care, which includes the price of dying.
One health economist thinks were up to it
quarter of health-care spending goes to taking care of
people in their last year of life. Its a signicant statistic when
you consider that, on average, Canadians live more than 80
years; a bit more than one per cent of ones lifetime eats up
25 per cent of ones health-care expenses.
But its not all that surprising when you think about it. After all, the last
year of life by denition includes some sort of fatal medical condition,
whether it be cancer, infectious disease, or serious injury. Unless death
comes very suddenly think catastrophic accident or massive heart
attack doctors will spend a lot of resources trying to keep you alive,
and rightly so. Indeed, you might nd it encouraging that the other three
quarters of health-care spending is so successful.
As a society, we spend a lot of money with the intent of keeping people
alive, and failing to do so. The bean
counters suggest that we could spend
our scarce health-care resources more
e ciently. The resources we spend
on one person are not available for
another. Is it really worth it to spend so
much on heroic measures to save, say, a
terminally ill or very elderly patient when those resources might allow us
to actually save more lives or prevent disease in the rst place?
Dr. Konrad Fassbender says that isnt a callous question. As a professor
of palliative care medicine with expertise in health-care economics at the
University of Alberta, he says its time to open up a discussion about how
we choose to spend our health-care resources. Saving lives and improving
the quality of them are valid objectives, after all. So at what point does an
unlikely cure become an impossible cure?
Dr. Fassbender says that theres no single clear threshold. The best
way to think of this is in terms of percentages, he says. When doctors
provide treatment options for patients, theres a probability of cure. We
are all familiar with cases where patients survived having been given
little chance of survival. And of course, there are no guarantees for those
given a high chance of survival, either; sometimes people just die, despite
good odds. That doesnt mean that money spent trying to save them was
wasted. Health-care costs in the last year of life, Dr. Fassbender says, do
two things. First, they attempt to cure or prolong life. Second, when no
cure is possible, they go to maintaining comfort and care.
The question of when curative treatment becomes futile (and who
should decide) is controversial, and probably always will be. Consider the
case of Hassan Rasouli, a 60-year-old Toronto man whose brain surgery
was followed by an infection that left him tragically in, what doctors
described as, a permanent vegetative state. Accordingly, they proposed
to discontinue life support, but his family objected, and the case is now
before the courts. Both sides hope that the decision in this case will clarify
the standards for resolving similar situations in the future.
While the point-of-no-return may be di cult to identify for certain,
there are inevitably cases in which it is clear that weve passed it. Heroic
or sustained eorts are often no picnic for the patient, either, which is
why some people choose to execute advanced directives to avoid the
discomfort and intrusiveness of desperate measures. Yet few people get
around to preparing such documents before they need them.
In any event, health-care spending is not simply about keeping people
alive, but about maintaining as much of a high quality of life as possible.
And, as Dr. Fassbender points out, The transition from extending life to
preserving the quality of life is gradual.
There are great personal costs to dying, too. Dr. Fassbender says that
when you look at total health-care costs, which include patients and
caregivers time o earning, medicines, supplies and aids to daily living,
that 30 per cent of the burden of health care is shouldered by private
citizens. One of the less understood costs is associated with care giving.
A large portion of caregivers are in the workforce, Dr. Fassbender says.
His research shows that the value of the caregivers time in the last
six months is equivalent to what
the health-care system provides
Theyre equal partners in the care of
that patient, he says. Another stark
statistic: he found that 50 per cent
of people who die of cancer do so
in poverty.
Dr. Fassbender urges people to consider the cost of health-care in a
broader framework, one that takes that 50 per cent into account. At no
time does a doctor advocate to a patient to save money for the system, nor
should he. But surely, Dr. Fassbender says, we could imagine a forum for a
healthy and open discussion about health-care costs, not at an individual
level, and not limited by time or pressure in hospital setting.
Critics would argue discussions like this put a price tag on care is
this ethical?
Theres abhorrence to associating a dollar value with care and so
there isnt a lot of push to know what those costs are, Dr. Fassbender
says. But not knowing those costs has a big impact. We dont have
the accountability, the checks, the balances, to understand if were
receiving value for our money, Dr. Fassbender says. The ine ciencies
in the current system come with consequences that impact care
into the future.
Dr. Fassbender would like to see decisions about health care happen
in an informed way through thoughtful public discourse that could lead
to better solutions and innovation. For example, he says, there might be
ways to deliver life-prolonging but not curative care at a fraction of the
cost in settings apart from expensive intensive care units in hospitals.
Beeng up hospice care and intermediary care settings is an up-front
investment that could save the system money in the long run. We
cant manage it without talking about cost, Fassbender says.
Dr. Fassbender acknowledges that harder decisions would theor-
etically have to be made in times of famine or disaster, when food and
basic necessities are scarce. He recalls the story of elderly Inuit who
would go o on an ice oe to die, so that the next generation would
have enough to survive. But we do not face such a choice. Although
resources are scarce, he says, we can aord to look after our dying.
How that palliative care looks in the future is up for discussion.
A
BY TOM CANTINE / ILLUSTRATION BY HEFF OREILLY
Sharing: FACE CANCER WITH STORIES
Thinking
BIG
Managing pain in palliative patients
can be challenging for caregivers
as it varies widely per patient.
Fortunately, there are tools to help
ain is a very individual experience, which makes it pretty tough
to measure objectively when only the person experiencing the pain can
describe it. This makes the job of managing pain in a palliative patient
particularly challenging. The goal of palliative care is to relieve and prevent suering in
patients throughout their illness. An important focus for caregivers is to assist patients
who are nearing the end of life by managing their pain and disease symptoms while also
helping them remain both lucid and comfortable.
There are many things that aect the amount of pain a person feels as a disease
progresses. Palliative care uses an interdisciplinary approach that includes input
from physicians, pharmacists, nurses, chaplains, social workers, psychologists,
rehabilitation therapists, music therapists and other health professionals who
formulate a plan of care to relieve the suering in many areas of a patients life.
We look beyond the physical to other factors that may be aecting pain, says
Dr. Cheryl Nekolaichuk, counselling psychologist at the Tertiary Palliative Care Unit
of the Grey Nuns Community Hospital in Edmonton. In some cases, we can reduce
the amount of pharmaceuticals required to keep a person comfortable by helping
them deal with issues like anxiety, despair or fear. Reconciliation of relationships or
counselling to resolve issues and reduce stress can help a patient reach a place where
he or she can be at peace.
P
BY DEBBIE OLSEN
Personal
Its
Palliative care is a relatively new specialty of medicine, but Canada, and in particular
Alberta, is leading the way in advances in this eld. Dr. Balfour Mount, a Canadian
physician, is considered to be the father of palliative care in North America. He coined
the term palliative care, which comes from the word palliate, meaning to improve
the quality of something. If youve been ill or had surgery, you may have been asked
to assess your pain on a scale of one to 10. In Edmonton, researchers are continually
working to improve cancer patient care and have worked extensively on scientic
methods to assess pain and symptoms. Modern cancer care researchers in palliative
care facilities worldwide use the Edmonton Symptom Assessment System (ESAS) and
the Edmonton Classication System for Cancer Pain (ECS-CP).
Dr. Eduardo Bruera developed the ESAS and Nekolaichuk and Dr. Sharon
Watanabe, director of the Department of Symptom Control and Palliative Care at
Edmontons Cross Cancer Institute, revised it. The system is useful and it gives
a quick way for health-care
providers to more accurately
measure symptom intensity in
patients with advanced cancer.
It does this by including pain
and eight other common symptoms of advanced cancer, with the option of adding a
tenth patient-specic symptom to assess as a whole package.
Nekolaichuk and Dr. Robin Fainsinger developed the ECS-CP. (Fainsinger is a
specialist in palliative care medicine at the University of Alberta and is a clinical
director for the AHS Regional Palliative Care Program.) Their work has its roots in
that of Brueras. The classication system enables clinicians to better characterize a
patients cancer pain and guide treatment and allocation of resources. Having a more
scientic description of pain also helps researchers assess the outcomes of clinical
trials in cancer pain management and ultimately produce better pain relief.
Palliative care is an intellectually challenging eld to be involved in because it is
always changing, says Watanabe. The palliative care team works together to see the
patient as a whole person and to care for the whole person. We try to make a dierence
for patients and their families at a very di cult time and there is a great sense of
reward that comes from having that kind of impact.
Palliative care is a relatively new
specialty and Alberta is leading
advances in the eld.
FAMILY ADVICE
Families are an important part of cancer care.
It is common for family members to feel a wide
variety of emotions, including helplessness
and uncertainty about how to help a loved one
who is receiving palliative care and nearing the
end of his or her life. Dr. Nekolaichuk and Dr.
Watanabe suggested some tips for families to
take part in patient care while coping during
this difcult time.
Provide a sense of home: Bring in pictures,
photographs, a special quilt or comforter to
make the palliative care room as homey and
familiar as possible.
Keep the patient informed: Allow patients to be
as involved as possible in making decisions about
their care. This gives them a sense of dignity and
control over their situation.
Listen to your loved one: It shows that his or her
words hold value and that you care. Inform the
health-care team if you notice that the patient
is becoming confused as this may be improved
through a change in the treatment plan.
Talk to the health-care team: No one knows
your loved one as well as you. Let health-care
workers know how to best support the patient.
Recognize your role: Realize that the little
things you are doing are important. Just being
there is an incredible support to a patient.
Let conicting emotions happen:
Family members often begin the grieving
process before their loved one passes on.
Realize that you will have many feelings during
this difcult time and give yourself permission
to have those feelings.
Care for yourself: Its important to take care
of yourself. Take breaks and recognize that its
OK not to be there all the time. Try to keep up a
semblance of structure in your life.
Get support: Ask for help if you need it from
family, friends, community or professional
caregivers. Family members experience as
much stress as patients do. The palliative care
team is there to support the patient as well as
family members. Sometimes its good to talk to a
chaplain, psychologist, social worker or therapist.
Dont judge: There is no right way to cope. Some
family members just wont be able to be there
for whatever reason. Let them deal with things in
their own way.
Say the important things: Find ways to say and
do important things with your family member.
You can plan a special evening, weekend or day
together even if you never leave the palliative
care room. You may want to say that nal
goodbye to your loved one.
Malnutrition is one of the most disabling
consequences of cancer. But patients dont
have to disappear
BY GISELE APARACIO-HULL / ILLUSTRATION BY HEFF OREILLY
the study of drug therapies to reduce muscle wasting, says the impact of the research
has garnered lots of international interest.
Its not applicable to all cancers, but it could potentially reverse muscle wasting in a
few patients. This would be very important, as progressive muscle wasting is how most
patients die, he says. It can lead to respiratory failure.
Pinpointing the factors that increase susceptibility to wasting is
another crucial step since it could lead to a more tailored and eec-
tive approach to assessing and treating cancer patients. Published
ndings by Baracoss team revealed some cancer patients are more
likely than others to experience malnutrition and weight loss.
If you know the markers for susceptibility, you can test those markers and can tell in
advance who is at risk, she says. It becomes extremely important to nd out whether
individual cancers or individual people are going to need more care, more attention
and more specic treatment.
Team members in cancer and nutrition research who worked together towards
this common purpose made progress possible, says Baracos. Describing herself as the
mother hen, she has worked hard to connect eorts around the world to develop an
international cancer cachexia network.
Theres never been a huge focus on this, so someone has to increase the
research capacity and potential, she says. Collaboration is the key to Baracoss eorts.
Together we bring a lot of approaches and methods to advance quickly.
Patients will be the real beneciaries.
ou might think malnourishment doesnt
exist anymore, or that its uncommon, says
Dr. Vickie Baracos, the Alberta Cancer Foundations
chair in palliative medicine. But in western countries
malnourished people are usually that way as a conse-
quence of disease.
Cancer is the disease most associated with malnutri-
tion, leading to wasting syndrome in patients. It aects
nearly half of cancer patients and is the cause or strong
contributing factor in many cancer-related deaths.
Wasting, also called cachexia, is disease-associated
malnutrition. Its characteristic loss of body weight, par-
ticularly in loss of muscle, is involuntary and cannot be
treated with conventional nutrition alone.
Muscle wasting is not on peoples minds and people
are not often aware of it, says Dr. Baracos. But many
people with cancer can have terrible loss of muscle, caus-
ing weakness and fatigue, and loss of physical function to
the point they need help to move about.
The eect of this weakened state makes the body
less resistant to stress, resulting in a lower tolerance
to cancer treatment, sometimes to the point where the
patient needs to stop treatment. The loss of indepen-
dence combined with the inability to engage in normal
daily activities, such as sitting at the dinner table and
eating with others, can also present a psychological and
social impact.
Your ability to enjoy food is
lost, your weight is lost, Baracos
says. Your body image can be
changed and reect on your over-
all well-being.
Her studies on the eects of malnutrition and weight
loss in cancer patients have made her a leading expert on
the topic. One of her signicant contributions is in the
use of imaging techniques to detect loss of muscle mass
and diagnose cancer-related wasting, diagnosis being
one of the primary challenges researchers face.
Muscle wasting is di cult to detect since it is hidden
behind the fat mass on the body and is not obvious to the
naked eye, she explains. Using CT images and mag-
netic resonance imaging (MRI), were able to diagnose
severe muscle wasting.
Baracos nds advancements in the testing of nutri-
tional and drug therapy encouraging and she predicts
new treatments for cachexia are imminent. Her research
team has played a role in developing nutritional status
proles and the use of supplements to reverse muscle
wasting. Because nutritional intervention is only as
eective as the state of a patients appetite, there are
also clinical trials currently being conducted to test
drugs which could increase appetite and even build
muscle mass.
Dr. Michael Sawyer, medical oncologist at the Cross
Cancer Institute who has partnered with Dr. Baracos in
Y
Muscle wasting lowers
a patients tolerance to
cancer treatment.
STRONG ASSOCIATION
Dr. Baracos says that muscle wasting can add a week to cancer
patients post-operative hospital stay. Almost any cancer can cause
malnutrition, and wasting will vary a lot by individual. But some
cancers are more strongly associated with the muscle wasting that
is the hallmark of cachexia. These cancers include:
Lung cancer
Esophageal cancer
Pancreatic cancer
Stomach cancer
Devon Canada Corporations mission, vision and
values are clear when you go to the companys web-
site: Hire the right people, always do the right thing,
deliver results, be a team player and be a good neigh-
bour. For many companies talk is cheap but a quick
visit to Devons head ofce, in downtown Calgary, is
enough to prove these guys (and gals) actually put
their core beliefs into action and not just when it
comes to increasing share prices. Sure were all here
to work, Vern Black says, Devons Grande Prairie dis-
trict production manager. But back in 2008, when his
fellow co-worker and friend David Stokes was diag-
nosed with cancer, Blacks initial reaction was, What
can we do to help?
I remember that day when he walked into my
ofce and sat down like he often did, Black says. This
time, it was to deliver the news that he had a brain
tumour. Dave had a good understanding of the jour-
ney ahead of him and, as a friend and co-worker, I
needed to help him, he says.
Stokes, who was a production engineer at Devon, left
a positive impact on those he came in contact with,
establishing solid friendships with Black and others
throughout his career. One of them was co-worker Lloyd
Murray. My memories of Dave, outside of the office,
include spending time together in the arenas watching
our boys play hockey, our daily bike ride together from
work to home where we would chat about work, solve
the worlds problems and most importantly, the race up
10th Street N.W. with Dave pushing the pace, says
Murray. Both Murray and Black looked for ways to coun-
ter that helpless feeling people get when someone they
care about is diagnosed with cancer.
Black initialized a Shave for Dave campaign, giv-
ing friends and co-workers the option to sponsor him
or join him in getting donations to shave his head.
When we nished this event, I was absolutely blown
away, he says. I thought it would be sweat on my brow to raise $10,000, and we
nished up by raising $80,000. He sounds proud of the accomplishment, but still
sad when he talks about his old friend David Stokes.
With such a large sum came possibilities for how to direct the funds. Black was
able to help Stokes research the various options. We explored a lot of ideas and
talked about a lot of initiatives, Black says. In 2009, the David C. Stokes Summer
Studentship in Brain Tumour Research was established. Through the generosity
of family, friends and co-workers of David Stokes, the studentship will provide sup-
port for an undergraduate student who has identied brain tumours as their area
of cancer research, says Marianne Bernardino, senior development ofcer with
the Alberta Cancer Foundation.
Dave advocated the pursuit of education and he excelled at being a mentor,
Murray says. In keeping with this philosophy, he wanted to see this money assist
aspiring cancer researchers so they could determine if brain tumour research t
their interest as a possible career path.
In order to endow the Stokess Summer Studentship at the $125,000 level,
Stokess friends needed an additional $40,000. This year, his colleagues and friends
at Devon stepped up again by participating in the Banff-Jasper Relay and the Enbridge
Ride to Conquer Cancer beneting the Alberta Cancer Foundation. I believe Dave
would think its really fitting that I am on my bike, helping to establish a legacy for
him, fellow bike commuter Murray says. They raised $45,491.94, ensuring an annual
grant in perpetuity.
For me, this has been a remarkable example of what can be done when people
unite for a cause, Black says, deecting the credit for the undertaking. This was
something Dave started and we had the honour of nishing.
David Stokes passed away in 2010. Many people had the good fortune of
knowing him as a friend, co-worker, mentor, fellow hockey dad or bike commuter
and they all miss him.
BY STACEY CAREFOOT
Friends and co-workers of a
Devon Canada Corporation
employee further his legacy
IN MEMORY: Everyone at Devon Canada Corporation was touched
by the loss of Dave. A studentship keeps his memory alive.
TEAM
WORK
corporate giving /
WORKING FOR A CAUSE
BY MIFI PURVIS
or nurses caring for patients who have
cancer, radiation therapy is a key tool in the
treatment of cancer. Cancer is sensitive to
it, says Dr. David Skarsgard, radiation oncologist
at Calgarys Tom Baker Cancer Centre, and,
increasingly, its used in conjunction with surgery and
chemotherapy.
About half of all cancer patients will receive some
kind of radiation therapy. Its success relies on the way
the body normally repairs cellular damage as much as
it relies on the way the cancer cells respond to it.
Radiation deposits energy in the nucleus of a cell,
damaging the DNA, Skarsgard says. The reason
radiation can be effective is because healthy
cells can repair themselves, whereas cancer
cells cant do this as efciently. Skarsgard
says that, in a radical or curative course of
treatment, which could take place daily for
ve to nine weeks, the cancer will fall further
and further behind, its self-repair unable to
keep up with the damage the radiation is causing,
until hopefully there is no cancer left.
About half the time, radiation therapy is used
palliatively, to treat cancer sites that are causing
patients pain or impairing organ function. For
these patients, we aim to improve the quality of life,
Skarsgard says.
F
EXTERNAL BEAM RADIATION:
Field of beams
A radiation therapist consults an oncologists treatment plan and uses
a linear accelerator to deliver external beam radiation to a patient.
The therapist operates the machine from outside a special room with
foot-thick walls designed to protect others from the radiation being
delivered to the tumour or the site where the tumour used to be, prior
to surgical removal. Curative treatment happens ve days a week,
over ve to nine weeks. Therapists consult the treatment plan and tiny
tattoos they have put on the patients body to
pinpoint the exact site to deliver therapy.
Each treatment takes just a few minutes
and most patients tolerate it well.
Find out how it works with our
guided tour of radiation therapy
TO BEAM OR
NOT TO
BEAM
BRACHYTHERAPY:
Not a dinosaur species
Brachytherapy, sometimes called
internal radiation therapy, happens
when oncologists and surgeons place
radioactive materials, such as seeds the
size of long grains of rice, in the body at
the tumour site. The radioactive implants
may be temporary, removed after a certain
amount of time has passed, or permanent.
In the case of some kinds of temporary
brachytherapy, patients might be isolated
while receiving therapy and they might
need to take at-home precautions
later, such as avoiding close contact
with pregnant women or children. The
radiation dissipates over time.
SYSTEMIC RADIATION THERAPY:
All systems go
Patients take this kind of therapy by swallowing the medicine, via
injection or via instillation, in which the medicine is instilled into
a body cavity, such as the abdomen. An active ingredient, such as
radioactive iodine for example, travels through the patients system
to kill the cancer. Patients usually have to stay in the hospital in semi-
isolation for a few days during this treatment, and take precautions
against exposing other people to radiation once they go home. The
radiation dissipates over days, until the level of radiation in your body
is no longer a potential hazard to others.
50
Years of Volunteers
ere all busy. Finding time to friend someone on Facebook is
sometimes as much as we can muster, never mind befriending someone in
a real-life situation. But thats just what a lot of volunteers do with hours
theyve carved out of their busy schedules. Volunteers at Edmontons Cross Cancer
Institute share their time and energy, often making a dierence in patients lives as
well as their own. And its not a new endeavor.
Half a century ago, the then-director of Cancer Clinics of Alberta, Dr. Robert G.
Moat, hoped volunteers would ll the missing link and add to the care regimen his
patients already received at the Edmonton Cancer Clinic. His eorts led to 24 volun-
teers assembling for the rst time on February 18, 1963. They started sharing stories,
refreshments and hugs with cancer patients on a regular basis it was the humble
beginnings of todays Cross Cancer Institute Volunteer Association. The bar was set
high and volunteers have continued to expand their oerings to patients. Volunteers
run the programs with funds from donations and prots from the volunteer-run gift
shop, bookstore and coee shop.
Today, patients at the Cross interact with about 12 of the 50 volunteers who work
at the hospital on any given day, sometimes in the shuttle van, lab or even in their own
hospital room where volunteers swing by just to chat. Volunteers rave about the
supportive atmosphere they feel in the hospital, and word-of-mouth attracts people of
all ages and experiences to ll the four-hour shifts in the associations 25 programs.
This fall, more than 400 volunteers will help celebrate 50 years of the Cross Cancer
Institute Volunteer Associations success with patients and sta. Meet just a few of
the many of the volunteers who make a dierence in patients lives at the Cross Cancer
Institute each week.
W
MARK ARMSTRONG is a ve-year volunteer as an inpatient friendly visitor.
What he does: Visits and chats with patients and their family members.
What he says: Many people volunteer because theyve been touched by cancer, but thats not
the case with me. I just wanted to do something meaningful. One patient, a girl, was at the Cross
for six months where I got to know her really well shes had brain tumours since age seven. She
had a Snoopy/Peanuts video that she loved and, on a whim, bought me a Snoopy/Charlie Brown
gurine. Im a big kid with toys motorcycles! but this became our thing, toys. I bought her a
Snoopy doll on a recent trip.
Im amazed by the grace and strength I see in people. I dont worry about things as much as
I did before volunteering. Ive been very lucky, I have a great life. I think volunteering is one of the
most important things to me.
50
Years of Volunteers
The Cross Cancer Institutes volunteer
association is celebrating its half-century
anniversary. Meet some of the people that
make it work
BY MICHELLE LINDSTROM / PHOTOS BY RYAN HIDSON
JOHN LEUNG is a two-
year volunteer with the
host(ess) cart, lab medicine,
escort and chemo assess-
ment.
What he does: Takes re-
freshments to patients and
family members; completes
lab administrative work; es-
corts patients around hospi-
tal for appointments; and
oers comfort by refresh-
ments, blankets or conver-
sation to patients undergo-
ing chemotherapy.
What he says: Im 20
years old and a science
student at the University of Alberta. In terms of careers, I denitely
want to do something with health. You imagine a cancer hospital to be
very gloomy but I nd the patients are joyful, even. They constantly
smile and say Thank you. Like, where do they get this stu right?
MARILYN KERR is a 16-year volunteer in
wig services and the Cancer Information
Centre.
What she does: Fits wigs and shaves heads
(when requested); elds phone calls for pro-
gram registrations; and works in the library,
which oers newly-diagnosed patients can-
cer-related information.
What she says: After nishing my cancer
treatments 16 years ago, I decided to volunteer
and give back to everybody who was so good
to me. When I went through it, it didnt matter
how much I prepared for losing my hair; it was
traumatic. I was in the shower and, all of a
sudden, I had handfuls of hair in my hands.
I was totally lost.
When you explain to people whats nor-
mal in cancer treatment, theyre relieved and
can move on. Its really nice to be able to help
people get through that.
SHIRLEY GAUDET is an
11-year volunteer for the
Cancer Information Centre,
new patient information
session, childrens tours and
past president for the board.
What she does: Facilitates
new patient info sessions
and tours; works in the
library and registration; as-
sists with tours for children
of family members receiving
treatment; and attends vari-
ous board meetings.
What she says: I used to
work at the Cross and I loved
my job. After I retired and
thought Id do some volunteer work, I knew where I would go: back to
the place I love. Theres compassion and caring evident in everybody
who works here. The patients have such strength and resilience. We
attract people from all dierent walks of life: doctors, professors,
housekeeping, retirees, people new to the country and more. We
get this variety because volunteers can actually feel that theyre
contributing to the good of patients and families.
EDYTH FLORENCE is a
22-year volunteer, the last 17
years for gift-shop buying
committee.
What she does: Goes to
Edmonton and Torontos
gift shows and purchases
items to sell at the Cross gift
store.
What she says: I got my
5,000-hour volunteer pin
this year. Volunteering is a
win-win scenario: it helped
me accept losing my parents
and a good friend to cancer
and the gift shop is a perfect
t for me.
I did a few dierent things in the beginning, but for about the past
17 or 18 years Ive been buying for the gift shop. Who wouldnt want to
go shopping for lovely gift items and not have to pay for them? Thats
not such a hard job, is it? The prots from the gift shop go right back to
the hospital.
JAKE DELEEUW is a two-
year volunteer van driver,
new patient information
session leader and a board
member.
What he does: Picks up
and drops o out-of-town
patients who are staying in
hotels or at the homes of
family and friends; takes
them to appointments at the
Cross; speaks as a survivor
in group info sessions;
attends board meetings.
What he says: I had cancer
twice, so I relate to patients
regarding therapies, side ef-
fects and impacts. As a patient, I was quite overcome by what volunteers
did and how good the organization was. It was an atmosphere of helping
people. I thought it would be neat to be a part of that.
Im 73, but still quite busy with sports, bicycling and we have a
good garden. But driving the van at the Cross is like a day o. Some of
the patients arent going through relaxing times, but if you can speak
a bit of hope into their lives and encourage them it just makes their
journey easier.
JEAN HUI is a seven-year
volunteer in new patient
information sessions and
Cancer Information Centre.
What she does: Informs
new patients where to ac-
cess support and guides
them to library resources for
information about diagno-
sis, symptom control and
treatment.
What she says: I worked at
the Cross 30 years ago and
remembered how special
the work experience was, so
I went back to volunteer.
I dont have older family
nearby to see anyone through to their end-of-life phase and, because of
that, its a mystery to me how people deal with the challenges of old age
and illness. But, by watching and talking to patients at the Cross, I
slowly understand how people come to terms with a diagnosis and
choose a path thats right for them.
Looking for More?
These seven volunteers had more to say than we
could t on our pages, but you can see the rest on
Leaps website myleapmagazine.ca.
For more information about volunteering, please
contact the Cross Cancer Institutes Volunteer
Resources Department at 780-432-8334 or
volunteer.cci@albertahealthservices.ca
After finishing my cancer treatments
16 years ago, I decided to volunteer
and give back to everybody who was
so good to me.
Friends
for LIFE
stories of giving
why I donate /
wo years ago, Al Monaco, 52, was not much of a bike rider.
In fact, he didnt even like cycling. But a fundraising opportunity
changed everything and today, the incoming president of Calgary-based
energy giant Enbridge Inc. (succeeding Pat Daniel this fall) loves to hop
on his dependable white Cannondale bicycle and go for a ride.
When he went on a cruise last year, he attended a spin class and cycled on
a stationary bike every day of his vacation. And for three months this year,
Monaco squeezed in weekly 75-kilometre training rides and trips to the gym,
making time in his busy schedule to cycle from Calgary to Bragg Creek alongside
other Enbridge employees. It was all in preparation for a two-day cycling event
beneting the Alberta Cancer Foundation. Participating in the Enbridge Ride to
Conquer Cancer, which takes place in Alberta every June, has been an opportunity
for Monaco to embrace a new sport, meet new employees, raise a lot of money
and motivate others to do the same.
Monaco got involved because a team leader suggested that his participation
could boost the Enbridge teams eorts to raise money for the cause. In an
instant, Monaco joined a sport he claims he didnt like, purchased a bicycle, and
committed to training rides and the two-day event. Like many Albertans, Monaco
has been touched by cancer, having lost two uncles to the disease. (His father
also faced cancer years before he died of other causes.) His familys experiences
made the decision to participate an easy one. Over the last two years, Monaco has
personally raised more than $75,000 for the fundraiser.
BY ANNALISE KLINGBEIL / PHOTOS BY EWAN NICHOLSON
Not every energy-company president would
don spandex shorts to raise funds for cancer,
much less cycle a couple of hundred kilometres
for LIFE
Balancing full-day training rides with his busy
professional role was tough, but also important, Monaco
says. It is a balance and it comes down to organizing
your time, he says. This is such a signicant event for
our company. You make time for it.
The two-day, 200-kilometre cycling event takes
place every year in Alberta, Ontario, Quebec and British
Columbia and Monaco says
its an important fundraiser
for each provinces cancer
foundation. It really makes
a huge impact. Were raising
major dollars here. Last year, across the country, this
ride brought in $44 million, he says. And it looks like
this year, were on track to meet that number. Monaco is
one of 328 Enbridge employees from across Canada who
participated in one of the four challenging 2012 Enbridge
Ride to Conquer Cancer events. Its tough rolling
through the rain and the wind and the hills, but on the
other hand, its a small price to pay to ensure that were
helping nd the cure, he says.
While some company sponsorships typically involve
little hands-on work, Monaco says involvement with
the Enbridge Ride to Conquer Cancer allows fellow
employees to participate, volunteer and raise funds. This
(sponsorship) is dierent because we our employees
and our leadership are involved in it right from square
one, he says. Were involved right across the country.
Devon Smibert, a systems architect at Enbridge and event participant in all four
provinces this year, says cycling alongside Monaco at the Calgary race demonstrated the
strong leadership skills the soon-to-be company president possesses. Its very inspiring
to see that our man at the top is living the values of the company, Smibert says. He was
out there on a bunch of the training rides with us.
Smibert, an avid cyclist, helped co-ordinate weekly team training rides for three
months preceding the event. The training rides, and
the big ride itself, were opportunities for Smibert to
raise funds for a cause close to his heart his wife was
diagnosed with cancer last January and to participate
in an activity he likes.
And Smibert has come to know his company a little better. Ive been able to meet
people across the organization that I would never come across in my normal job,
Smibert says.
Monaco agrees that there is an extra business benet to Enbridges participation:
the training and race itself are positive team-building experiences. I really enjoy the
training rides, especially because it gets you out with employees and youre all focused on
the same goal, Monaco says. Its not a goal that we normally associate our interaction
with. Normally were talking about developing pipelines or the nancial aspects of our
business. This is something dierent and I think its fun to interact with employees on a
dierent level, on a community level.
By saddling up on his Cannondale, Monacos role as a cancer fundraiser has allowed
him to set a positive and progressive leadership example and, as a bonus, to discover a
new sport. The process has changed his low opinion of cycling. Its been a lot of fun. I
enjoy riding now. Its is a good sport for people in middle-age, Monaco says. I think its
the new golf.
The Enbridge Ride netted $44 million
nationally last year. Monaco has
personally raised over $75,000.
STORIES OF GIVING
why I donate /
BUSY TIMES: Training rides were hard for
Monaco to t in his schedule, but necessary.
Way
BY SCOTT ROLLANS
A sample of easy-to-access Alberta trails
proves that these routes were made for walking
Walk
THIS
good walk can be a mini-vacation. It allows you to literally step away
from your hectic life for an hour or two, to ll your lungs with good air, and to
reconnect with the natural world around you. And, no matter where you are in
Alberta, that world is beautiful indeed.
Walking just might be the ideal tness activity. It requires no gym membership, no
expensive equipment, and no special abilities (assuming you dont have mobility issues).
All you need is a comfortable, sturdy pair of shoes.
I have always loved going for walks. As a kid, I walked with my parents. As a parent, I
walked with my kids. I have hiked mountain trails with a 25-kilogram backpack, and
patiently dawdled through urban parks with toddlers.
In my mind, the map of Alberta is criss-crossed with favourite places to walk. In the
space of a few paragraphs, it would be impossible to even begin to list them. Instead,
Ill start you o with ve of my favourites, representing a variety of regions, terrain and
di culty. After that, youre on your own!
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CALGARY: Weaselhead Flats
DIFFICULTY: Easy
GETTING THERE: Parking lot at 66 Avenue & 37
Street SW
Theres something magical about escaping a city without
leaving its boundaries. At Weaselhead Flats, get just a few
steps away from the main parking lot and youll forget
that youre just minutes from downtown Calgary.
Weaselhead Flats encompasses the area where the
meandering Elbow River spreads out into an inland
delta as it ows into the Glenmore Reservoir. In the
course of your walk, youll wander through wetlands,
shoreline, deciduous forest, and a huge stand of white
spruce encountering distinct species of plant, animal
and bird life in each area. Because the park borders on
the countryside, you may be lucky enough to spot deer,
coyotes, moose, or even a black bear.
A lovely paved trail and boardwalk loops its way
through Weaselhead, but consider escaping onto
the many side trails that branch o on either side
particularly when the main trail is busy, as it often is in
ne weather. With the endless variety of available routes,
and the changing seasons (including winter, particularly
if youre a cross-country skier), every Weaselhead visit
can feel like the rst.
EDMONTON: Clifford E. Lee Nature Sanctuary
DIFFICULTY: Easy
GETTING THERE: From Highway 60, travel 1.6
kilometres west on Woodbend Road (13.2 kilometres
south of Highway 16A), and then south onto Sanctuary
Road for 1.4 kilometres.
As a lifetime Edmontonian, I love my
citys vast network of river valley trails.
When I was an at-home dad of two
little girls, however, I discovered
this hidden gem just southwest
of town. Wed throw a few snacks
into a daypack, jump into the car,
and half an hour later wed be on
our own little nature adventure.
My girls loved the sanctuarys
main feature, a raised boardwalk
through a marsh and around a large
pond. Wed while away the afternoon sitting
on the boardwalk and viewing platforms, dangling our legs
over the edge, trying to glimpse some of the many species
of waterfowl described on the interpretive signs, and yes
eating our goodies. Later, wed follow the sandy trails leading
away from the wetland through grasses and wildowers and
into mixed forest.
Although we sometimes encountered another person
or two on the trail, we usually had the place to ourselves.
My kids grew into young adults, and we occasionally make
nostalgic pilgrimages back to The Lee. It really feels like
our place a sanctuary, indeed.
ELK ISLAND NATIONAL PARK:
Amisk Wuche Trail
DIFFICULTY: Moderate
GETTING THERE: About 16
kilometres north of the main park gates,
just past the Astotin Lake turnoff.
Elk Island National Park may be overshadowed
by its more glamorous mountain cousins, but its a
walkers paradise. A network of trails, from paved and easy to wild and challenging,
oer options for hikers of every age and ability (some are even wheelchair
accessible). Im focusing on just one trail, but I have hiked most of them and would
enthusiastically recommend them all.
Amisk Wuche is Cree for Beaver Hills and, true to its name, this 2.5-kilometre
trail meanders through wetlands and up and over several reasonably steep climbs. You
may even encounter live beaver along the way; in any case youll see plenty of evidence
that theyre around. If you have kids with you, get them to look for lodges and chewed
stumps as you cross several beaver ponds on oating boardwalks. Later, the trail winds
over the surrounding hills, through birch, aspen and spruce forest, giving everyone a bit
of a workout before you get back to the car.
In August, if its a good year for berries, saskatoon bushes along Amisk Wuche hang
heavy with fruit. A trail with built-in snacks.
PHOTO COURTESY
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BANFF: Tunnel Mountain
GETTING THERE: Parking lot and trailhead on the north side of St.
Julien Road. In summer, an upper trailhead on Tunnel Mountain Drive
provides a slightly shorter option.
This busy trail may not qualify as a hidden treasure, but its denitely
popular for a reason. Well-maintained and relatively short (2.4
kilometres one way), it nevertheless oers spectacular views and a
satisfying, somewhat challenging, climb with a 260-metre elevation
gain. Assuming youre reasonably t, two hours should allow you plenty
of time for photo stops along the way, plus a good break to enjoy the
summit.
Tunnel Mountain gets its rather ironic name from a railway tunnel
that was proposed in the 1880s but was never built. The trail starts o
with a series of switchbacks up the forested hillside, and in almost no
time you nd yourself enjoying a panoramic view of the Ban Centre,
the Bow River and the Ban Springs Hotel beyond. From there, the
scenery only gets better. The trail jogs east along a rocky ridge, high above
the Ban Springs Golf Course, with Mount Rundle in the distance. Then, at
the top, park yourself on a rock and soak up the 360-degree vista, including a
birds-eye view of downtown.
JASPER NATIONAL PARK: Sulphur Skyline
GETTING THERE: Park at Miette Hot Springs, and look for the trailhead to the right of
the pool entrance.
This is my favourite half-day hike in the Canadian Rockies and Ive done a lot of them.
Its perfect for determined youngsters, active seniors, and everyone in between. Less-
experienced hikers may nd the climb a bit arduous (the 700-metre elevation gain
makes it feel at times like a 90-minute StairMaster) but the payo-to-eort ratio is
unsurpassed. As long as you bring food, plus plenty of water (theres none on the
trail), youll be just ne. Best of all, the return trip (about 4.5 kilometres one way) is
all downhill, with a hot springs soak awaiting you at the bottom.
The hike starts with a steady climb through a forested valley for about 2.5
kilometres, before branching right at a well-marked, T-intersection. Then, as you head
up a long series of switchbacks, with benches thoughtfully placed along the way, the
views get increasingly spectacular. A lovely meadow, dominated by a huge white boulder
provides a great spot to rest up for the nal push to the summit. (If you want to impress
your companions, the boulder is called glacial erratic, carried there then left behind by a
long-ago glacier.) At the summit, youll nd yourself at one of the most breathtaking picnic
spots on the planet, with the amazing Ashlar Ridge stretching far to the west, and a dizzying
visual plunge down to the Fiddle River Valley to the east. Feel free to thank me later.
HONOURABLE MENTIONS
Help! I just cant stop at ve. Heres a quick shout out to Horseshoe Canyon
(Drumheller), Beaver Boardwalk (Hinton), Bears Hump (Waterton), Waska-
soo Park (Red Deer), Police Point Park (Medicine Hat), Sir Winston Churchill
Provincial Park (Lac La Biche), and Muskoseepi Park (Grande Prairie). And,
Im still just barely scratching the surface.
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BRUNO DI LALLA
FOR MORE INFORMATION about these and other trails
in Alberta visit www.albertatrailnet.com.
Research Rockstar
NEW WAVE: As the inaugural holder of the
Frank and Carla Sojonky Chair in Prostate
Cancer Research, Dr. John Lewis has already
performed beyond anyones expectations.
John Lewis arrives on a wave of
high expectations for prostate
cancer research
ts early July and research is in full swing at Dr. John
Lewiss lab on the fth oor of the Katz Group Centre for
Pharmacy and Health Research on the University of Alberta
campus. Natural light bathes the lab benches, which are about
three-quarters occupied. New arrivals are expected soon. Several
team members donning white coats are engaged in discussion
or working solo at the gleaming benches. The place smacks of
industry, which is remarkable considering that Lewis and his team
took residence less than two months ago.
They managed to pack up the research they had underway at
Lewiss lab in London, Ontario and continue their work, nearly
seamlessly, at the new space in Edmonton. Were still waiting for
a few things, he says. But were hitting our stride.
BY MIFI PURVIS / PHOTOS BY CURTIS TRENT
This morning, like most days, Lewis is fuelled with
exactly two pops of espresso, one from the machine at
home and one from the machine on his desk. Dressed in a
business-casual suit jacket and blue-striped shirt, open at
the collar, hes perfectly ready for the lab warming party
taking place later in the day. A well-cut mop of brown hair
falls across his forehead, adding to a youthful look and, at
42, he is young at least for this job.
Lewis is the inaugural holder of the Frank and Carla
Sojonky Chair in Prostate Cancer Research. Its the latest
cutting-edge research chair funded by Alberta Cancer
Foundation donors and his presence on campus is a coup
for the province.
But there is another story percolating in the background,
one that drives Lewiss. It starts before his PhD in
biochemistry at the University of Victoria and before his
work at Scripps Research Institute in California. It starts
when he was still a teenager in Owen Sound, Ontario. In
1989, unknown to the teenage Lewis, a 60-year-old man in
Vancouver was diagnosed with prostate cancer.
Now 83, Frank Sojonky has lived with cancer for 23
years. Through a combination of luck, participation in
auspiciously-timed clinical trials and surely due in part
to his irascible nature Sojonky had danced back-and-
forth with the disease, outlasting even the most hopeful
predictions. An entrepreneur with what he calls a long and
varied career in business, nance and real estate, Sojonky
asked his oncologist Dr. Peter Venner years ago what sort
of help he could provide for prostate cancer treatment and
research. Venners answer was a $270,000, 3-D ultrasound
to diagnose and monitor prostate cancer patients.
Sojonky quickly raised $400,000 for the foundation.
I was incensed to nd out that there was no formal
prostate cancer research program in Alberta, Sojonky
says. In the richest province in Canada!
Sojonky and a group of fundraisers called the Bird Dogs
set out to change that. He recruited local businessman and
longtime Alberta Cancer Foundation supporter Bob Bentley
to the cause by announcing Bentleys participation to his
surprise at a press conference. Bentley has been involved
with the Bird Dogs ever since. Over the years, the Bird Dogs
worked with the Alberta Cancer Foundation to create the
endowed $5-million chair. They later raised an additional $3
million for ongoing research. Joint funding initiatives and an
additional $6 million from the Alberta Cancer Prevention
Legacy Fund brought investment in the chair to $14 million.
When the University of Alberta search and selection
committee invited the Bird Dogs to meet in 2011, Lewiss
and Frank Sojonkys paths nally crossed
Lewis sat down at a table in a meeting room, Sojonky and
his wife Carla on one side and a small handful of Bird Dogs
on the other. We listened to him, interviewed him and gave
him a stern going over, Sojonky says, his voice still strong
over the phone from his holiday home in Canmore. The
group was impressed by Lewiss research, his organizational
skills and his attitude. My wife Carla has the ability to cut
through all the smoke and mirrors and she was impressed,
Sojonky says. In just two months in Edmonton, he has
performed beyond anyones expectations. In 20-odd
years, Alberta went from non-starter in prostate cancer
research to potential world-leader. Lewis is aware of the
Research Rockstar
FRESH FACE: John Lewiss move to Alberta was driven by
people like 83-year-old Frank Sojonky, who has lived with cancer
for 23 years and helped fund the research chair Lewis holds.
high hopes pinned on him. The Bird Dogs have also geared
up again, promising to raise an additional $5 million, which
the Alberta Cancer Foundation will match dollar for dollar.
Propped on the window ledge in Lewiss ofce are
several pictures, including a frame of an image that spells
out SURFING. Beside it is a picture of him on his board
in the California waves. Wed wake up, grab a board from
the quiver and go surng before work, he says. Lewis met
his wife, Dr. Natalie MacLean-Lewis, at a conference in
Monterey, California. She got me interested in imaging,
he says, settling into his o ce chair. He expanded on that
interest at Scripps Research Institute in California. My
goal in San Diego was to take biochemistry and imaging and
apply it to cancer, he explains. At Scripps I trained in the
development of nanoparticles.
Nanoparticles are engineered particles used medically
for drug delivery and imaging. You can basically engineer
them to do whatever you want, Lewis says. Nanoparticles
typically have a cavity that scientists can load with drugs.
We can decorate the outside with imaging agents, so we
can see where the nanoparticles are going, he says. And
we put targeting components on antibodies that hone in on
components of the tumour.
Once nanoparticles are locked and loaded, they need a
cloaking device in this case a polyethylene glycol polymer
to get by the bodys defences. Especially the liver, Lewis
says, which will clear the body of anything larger than
about ve nanometres. (A nanometre is one-billionth of a
metre.) The nanoparticles his team develops are massive on
a molecular scale, up to 85 nanometres in diameter.
Lewis has always had a technical bent and the possibility
of working with nanoparticles, a totally geeky-cool
endeavour, holds an appeal that is right up there alongside
curing cancer. In true translational medicine, Lewis wants
to take his discoveries from bench to bedside, partnering
with clinicians on the one hand and basic scientists on the
other. Clinicians have an interest in research but no time,
and basic scientists are distant from the everyday work of
a clinic, he says. The intermediary is the clinical fellows
on the team: the link between basic scientists and clinical
doctors, or real doctors, as his four-year-old daughter
would say.
She says my wife is a real doctor, Lewis says, adding
that his wife Natalie is a resident in internal medicine. She
calls me a chicken doctor. This being because his research
takes place largely on chicken embryos. You want to see
them? he asks. We leave his o ce, past the wobbly-looking
chicken his daughter made out of an egg carton, which
stands sentinel on a cabinet near the door.
Lewis leads the way back past the benches, opens
a door and steps into the microscopy suite. The really
cool stu is in here, he says. The room is lled with
top-line pharmaceutical-grade equipment. Team member
Dr. Desmond Pink is at work at a stainless steel countertop.
He nods a hello. Nearby, the window at the front of a
rotating incubator shows some metals beakers, agitating
at an alarming speed. And then the headline act: the
chicken embryos.
We study the way cancer moves. Watching this process
in a mouse model is very di cult, time consuming and
expensive. So weve actually developed a chicken embryo for human cancer. We crack them,
grow them in these dishes and add human cancer cell lines. We can watch them grow for
days under a microscope. Hes standing beside hundreds of eggs, cracked and emptied into
dozens of trays. Each egg looks vaguely like a lemon-coloured tropical ower, with darker
streaks of colour emanating from a blob in the centre.
His team has a bio-bank of about 150 human cancer cell lines. We watch as blood vessels
grow into the tumour, spread and invade. Lewis is starting to warm up. If hes the chicken
doctor, this is the roost. Compared to mice, we can do thousands of embryos a week. We
do large experiments, with clear-cut answers that you wouldnt see with other models.
Behind him, Pink only halfway listens to the explanation. He already knows this is where
the cool stu happens.
CATCH THE WAVE
YOU HAVE A FOUR-YEAR-OLD AND ARE EXPECTING A NEW BABY.
WHAT HAS SURPRISED YOU MOST ABOUT PARENTING?
The insights and observations. We play punch-plane instead of punch-buggy
and my daughter has the ability to see the tiniest glint of sunlight on a distant
wing and punch me long before its visible to anyone else.
WHAT HAVE YOUR WIFE OR COLLEAGUES NOTICED ABOUT YOU
THAT YOU WERENT AWARE OF?
Apparently I have a look when I am not happy about something. I have no
idea what it looks like, but its always pretty clear to other people.
WHAT IS IT ABOUT SURFING THAT APPEALS TO YOU?
It forces you to interact with nature. There are moments of complete calm,
punctuated by moments of extreme physical involvement.
YOU CANT SURF IN EDMONTON.
No, but its a complete city with a rich culture and great outdoor spaces. Im
also into mountain biking and theres no shortage of opportunities for that.
WHATS LURKING IN THE BASEMENT?
Wine. My wife and I like to travel and collect it.
FOR MORE INFORMATION about the Bird Dogs campaign,
contact Jane Weller, Alberta Cancer Foundation, 780-432-8358 or
jane.weller@albertacancerfoundation.ca
LINES OF INVESTIGATION
Lewis and his team have several programs currently underway in transla-
tional prostate cancer research. Theyre nding more out all the time.
Here is a sample of some lines of investigation.
TESTING: We anticipate well have a blood test for prostate cancer within
ve years. We want to identify which cancers will move the dangerous ones
and which will stay put.
DRUG DELIVERY: There are a lot of effective drugs out there, but they
can be quite toxic to the organs, especially the liver. Were trying to develop
nanoparticles that can very specically seek out and destroy a tumour by
delivering the drugs to it directly.
NOVEL ACTIVATION: Were looking at developing nanoparticles that are
activated by certain things in the environment of a tumour, such as pH.
NEW DETECTION: We just published evidence that prostate cancer turns
on a well-known hormone that is responsible for appetite. We wanted to know
if this could work in patients to identify cancer as opposed to garden-variety
prostate inammation. We took tissue from surgery and incubated it with the
targeted imaging agent to see if it would detect cancer, and it did.
DEEPTI Our relationship began the moment your chart
landed on my desk, Debbie, after your doctors fax arrived
at my o ce with your genetic counselling referral.
DEBBIE You got my le due to my family history. My
maternal grandmother died of breast cancer at the young
age of 45 years. Im now 51 years old, married and have
two daughters, 23 and 25. I had long been aware that the
chances of getting breast cancer might be higher for my
mother and possibly for me and my daughters.
In the mid-2000s doctors diagnosed my maternal aunt
with breast cancer; she was in her mid-60s at the time. Of
course I became more concerned about my possibilities
of developing breast cancer.
DEEPTI I know your family pretty well. Your family
carries a legacy of breast cancer. One of your relatives
came to our clinic some time ago to discuss genetic testing.
Since then, Ive met many of your family members to help
them through their own decisions about genetic testing.
D
BY DEEPTI BABU AND DEBBIE WHITFIELD
for LIFE
DEBBIE In October, 2007, my husband, two daughters and I moved from Edmonton
to a farm in Fawcett, Alberta. It was a dream we had to enjoy some country living. A
month later, I received a letter from my maternal aunt, whod been diagnosed with
breast cancer, saying that shed gone ahead with genetic testing at the University of
Alberta Hospital. She got the results saying that she had tested positive for the BRCA1
mutation, the presence of which indicates a higher risk for breast and ovarian cancer.
She had sent all of us family members information about the test and who to speak to
if we wanted to get testing, too.
DEEPTI I had already given several people in your family unfortunate news they
had inherited the gene mutation that predisposed them to develop breast and ovarian
cancer. The average lifetime risk for a woman to develop breast cancer is about 11 to
12 per cent; for ovarian cancer its one to two percent. If a woman carries the BRCA1
mutation, that lifetime risk jumps to as high as 57 per cent for breast cancer and 40
per cent for ovarian cancer. Men who carry BRCA1 mutations also have a higher
lifetime risk to develop prostate cancer and breast cancer.
DEBBIE I thought about getting tested but I was enjoying life in the country so I
procrastinated. My aunts daughter was tested and the results were negative but my
aunts son tested positive. My cousin called me and she gave me the name of a genetic
counsellor thats you, Deepti who I could contact directly. I thought it was great
that we didnt need a referral. But I continued to procrastinate.
Three years later, in August, 2010, I was diagnosed with high blood pressure and
high cholesterol. Id never had any other health issues. It made me think a little
harder about getting the genetic testing. My mother was never tested for the BRCA1
mutation. I decided to step up to the plate and get tested, for the sake of our two
daughters. Thats when you contacted me, Deepti, identifying yourself as the genetic
counsellor who was going to see me.
DEEPTI I called you to introduce myself, to learn about you and your medical
history, and oer a genetic counselling appointment. I found where you t into the
family tree, and honestly hoped your news would be dierent if you decided to have
genetic testing. Just like many of your family members whom I had met, you were
easy to talk to, eager to learn about your familys genetics, and seemed practical in
your approach to decision-making.
As our appointment approached, I looked forward to it but I had questions. What
would you be like? Could I answer your questions? Would I be helpful to you?
eepti Babu is a certied genetic counsellor
who has worked with several extended families to
discuss a history of cancer. She talks with patients
about cancer genetics, the pros and cons of genetic testing,
and what they can do with the information they receive.
Some patients choose to beef up their insurance coverage
before they get tested. Depending on their test results,
some might opt for preventive surgeries; others might
opt for vigilant monitoring. No matter how many times
she has counselled patients for this and any other reason,
she still feels a moment of dread or elation when their test
results come in. Its nothing compared to the rollercoaster
a patients feels just ask Debbie Whiteld, who saw
Deepti for genetic counselling to learn more about her
risk of cancer. While no two counselling sessions are the
same, here is a look at Debbie and Deeptis story.
Have you ever wondered what its like
to be tested for susceptibility to a
disease? Here is an insiders look at
genetic counselling
for LIFE
DEBBIE I dont like driving to the city, so in January,
2012 I got the blood work done here in Westlock. I
spoke with you, Deepti, you were kind enough to set
up a teleconference in March so I didnt have to go to
Edmonton.
That morning I found the building where the
teleconference was being held. Someone led me to a
large conference room where I waited for the telehealth
screeninfrontofmetocomeon.Ikindoffeltimportant,
likeIwasheadingupameeting,exceptIwastheonlyone
there. The screen came to life and I met you. We talked
about how I wanted to know if I had a BRCA1 mutation
andwhy.Iwantedtoknowmoreformydaughterssakes
than mine as they are still so young. I understood that if
I carried the mutation it would mean that my mother
did, too. If I did not carry it, it was still possible that my
motherandbrothermight.
DEEPTI Sittinginthecounsellingroomatthegenetics
clinic on the U of A Hospital campus, I looked at your
face on the screen in front of me, and we talked. You
were quite informed, and I learned more about your
richfamilyhistory.Iwasrelievedyouweregratefulthat
a motivated family member told you about this health
issue.Noteveryonefeelsthisway,andthatcanmakeit
difculttohaveanopenconversation.
You frst learned of the gene mutation in your
family a few years back, so youd thought about the
option of genetic testing. We talked in detail about it,
and explored how youd feel if you received good or
badnews.
After our hour-long appointment, me in the
counsellingroomandandyouinthatbigmeetingroom
in Westlock, you decided to move ahead with genetic
testing.Imentallycrossedmyfngersandtoesforgood
newsIalwaysdo.Ithoughtofyourdaughters,asyour
testresultwouldimpactthem.Andwewaited.
DEBBIE IwasgladImetwithyouandfeltgoodgoinghomethatday,knowingthatI
wouldfnallygettheresultsafteryearsofprocrastinating.
DEEPTI Several weeks later, your test results arrived. Before I looked in the results
sectionofthereport,Iclosedmyeyesandsentawishtowhateverhigherpowercould
possiblycontrolthesethings.Letitbegoodnews.Idontwantthisfamilytogetmore
badnews.AndIdontwanttobetheonetogiveittothem.
DEBBIE InJune,2012,youcalledmeandgavemethenews.Itestednegativeforthe
BRCA1mutation.Iwasecstaticandimmediatelytoldmyhusbandandcalledbothmy
girls.Theywerethrilled.Icalledmymotherandtoldherthenewsandmentionedthat
sheandmybrothershouldthinkabouttesting.Ialsocalledmyauntwho,bytheway,is
doing very well. I wanted to thank her for sharing her information with her extended
family.IamgladItestednegativebutifIhadtestedpositive,thenmydaughterscould
takeearlyprecautionarymeasures.
DEEPTI Thereitwas:Nomutationdetected.Icouldntcallyoufastenough.Trying
nottoletmyvoicegiveawaymyexcitement,Ioferedyouanappointmenttogoover
yourresults.Youpreferredtohearthemrightthen,overthephone.
Asformysilent,closed-eyedwishesIknow,Iknow.Itmakesnologicalsense.No
onehascontroloverthesethings.Nooneskeepingtrackupstairs.Thegeneticlottery
israndom,eventhoughitdoesntalwaysseemso.Isaythesethingstofamiliesevery
day.ButIalwayssendthatonefnalwish.
DEBBIE Its a fact of life that people hate bad news and some people would rather
notknow.AsmallpartofmeisalsolikethatIprocrastinatedgettingtestingdonefor
fveyearsbutthebiggerpartofmeneededtoknow.Iwasnttheonlyoneafectedby
this; our daughters have not have inherited the BRCA1 mutation. Their breast and
ovariancancerriskisthesameasmostwomensandthegenemutationwillnotcarry
onfromthem.
DEEPTI Thebestpartcamenext:youthankedmeforhelpingyourfamily.Youmade
iteasy,anditisntalwayseasy.Ithankyouforthat.
DEBBIE Ialsothankedmyauntandcousinforfndingyou,Deepti,andmakingthis
veryeasyforourfamily.Myonlyregretiswaitingsolongtogetthetestingdone.Now
itsbacktoenjoyingcountrylivingwithouthavingtowonder.
At Home, Walking
When she lived in Edmonton years ago, Edna Elias (pictured above holding
the pink toque) made sure she visited Inuit patients at the Cross Cancer Institute
whod made the long journey south from Nunavut to receive cancer treatments.
She saw rsthand the care they received. Elias has been a role model in Nunavut
Territory from her days as a school teacher in Kugluktuk in 1980. Trilingual in English,
Inuktitut and Inuinnaqtun, she has worked to preserve Inuit languages and culture.
She has championed the causes of others in her various official and volunteer
capacities. Today, her ofcial duties as Commissioner of Nunavut include ensuring
the democratic freedoms of Nunavummiut. And, symbolically, the Commissioner
supports the values of citizens, acting as a esh-and-blood symbol, representing
the interests of the people.
After the death of her younger sister from breast cancer, Elias decided to take
that symbolic status seriously. She was overweight and inactive a far cry from the
legendary tness of her parents generation of Inuit people. Mainly through exercise
and smart eating, Elias has since lost 100 pounds. She and a group of friends, calling
themselves Women of Action, decided to celebrate their health and raise funds for
the Alberta Cancer Foundation by heading out of
the land for a 224-kilometre walk from Bay Chimo to
Cambridge Bay. They walked for 10 days. We sat
out 2 days due to inclement weather, Elias says.
The biggest challenge was the glare ice we had to
walk on for the rst two days. The group experienced
rain, slush, fog and high winds. But the very last day
was bright and sunny.
They walked behind a supply team, who drove
ahead on snowmobiles towing camp equipment.
Accompanying Elias were Donna Olsen-Hakongak,
Elisabeth Hadlari, Jamie McInnis, Janet Brewster,
Jeannie Ehaloak and Capt. Yannick Fergusson, Eliass
Aide de Camp. Her support team included lead guide
George Hakongak, Jimmy Haniliak, Chris Arko, Jorgan
Aitaok, David Omilgoitok and Jerry Puglik.
myleap /
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