Experts by Experience 2015: A compilation of patients’ stories
together we’re better
A compilation of patients’ stories
Developed in cooperation with Stanford Medicine
Benjamin F. Miller, PsyD
A rare cancer survivor’s journey to thriving and advocating
Let symptoms – not age – influence treatment
A wake-up call from a young e-patient: “I need to be heard”
Breast Cancer Awareness: Beneath the pink packaging
Sometimes I just don’t have it in me to be inspirational
Empowered is as empowered does: Making a choice about living
Pattie Brynn Hultquist
Fighting Stage IV with full force
Emily Bennett Taylor
From leader to follower and back again
My life will be shorter than I’d hoped--What should I do differently?
My last promises to her: Advocate for lung cancer awareness and
live life to the fullest
How I’ve survived survivor’s guilt
The art of healing
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Introduction: Brian Loew
Welcome to Experts by Experience 2015, our third
installment of columns written by patients for Stanford
Once again, we pay special thanks to Scope editor
Michelle Brandt, Director of Digital and Broadcast
Media at Stanford University School of Medicine. Also,
we appreciate the leadership and vision of Stanford
physician and Medicine X conference organizer Larry
Thanks also to Ben Miller for writing for the foreword
to this report.
At Inspire, we are honored, and humbled, to see
patients and caregivers who are so giving of
themselves to connect with and help others, even in
their own times of need.
Together, we’re better.
If you’d like to read the prior installments in our “Experts”
series, here is the 2014 edition and the 2013 edition.
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Benjamin F. Miller, PsyD
Healthcare is built around all the wrong things. If we truly believe in creating
a patient-centered healthcare system, we should start by building off of just
that: the patient. Instead, we support and have created a morass of competing
interests that have little to no incentive to change to accommodate the patient
and their unique wants and needs. How did we get here and how can we
Nowhere is the history of healthcare more clearly
written than in Paul Starr’s brilliant 1984 Pulitzer
Prize winning book, The Social Transformation
of American Medicine. Professor Starr begins his
book as follows: “The dream of reason did not
take power into account.” In 1984, this statement
was like a light cutting through fog; it highlighted that we had created a sys-
tem that was built around a false hierarchy of the infallible provider that limited
the role of the patient. This power differential was perpetuated by parts of the
healthcare system that encouraged the provider to be the expert telling the
patient what to do in as expeditious manner as possible so they could help
and move on to see their next patient. This fee for service mentality grew and
grew until the system we have today emerged – one that values volume over
value. We have placed a different expert at the helm of the healthcare ship.
So where is the patient now?
Sadly, the patient still is being asked to “come” to the system rather than the
system come to them. But this is changing. Indeed, there is a revolution under-
way that places the patient in a more opportune position for influence. Com-
There is a revolution
underway that places
the patient in a more
opportune position for
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munities bring their stories, stories connected to data, to begin to advocate for
a new way of delivering healthcare. In fact, this compilation you are reading is
part of that revolution.
This document holds power.
This compilation holds promise.
Why, you may ask? Because there is nothing more potent to bring about
change in healthcare than our stories. Our stories are our power.
In order to bring about change in healthcare to create the patient-centered
system we all want, not the system we have, there must be a collective;
there must be a gathering of patients together, with data, to make a case that
change is needed and change is inevitable. The Inspire
community and ones like it can be a catalyst for this
So when you read this special report, don’t make the mistake and see it as
merely a compendium of stories; for it is far from that. Understand that this is
power personified. Let’s use this power to create a new hierarchy in health-
care where the patient is on top driving the changes; where the patient voice
is heard and acted upon.
Benjamin F. Miller, PsyD, is director of the Eugene S. Farley, Jr. Health Policy
Center, Department of Family Medicine, University of Colorado School of
Our stories are our
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A rare cancer survivor’s
journey to thriving and
When I was first diagnosed with a neuroendocrine pancreatic tu-
mor I didn’t dwell on the fact that I had cancer. With three kids at
home, I knew we needed to do all we could to beat the disease.
I was 39 years old when I was diagnosed, I had always been
healthy, and I knew that God was giving me signs that things were
going to be OK. What I didn’t know was that He was giving me an
opportunity to meet so many wonderful and caring people over the
next eight years of my journey.
Like many others who are diagnosed, I had no signs or symptoms.
My cancer was found completely by chance. I went into the emer-
gency room, in a city we didn’t live in, with excruciating pain, and
was told I had kidney stones. I was given pain medicine and told
that the stones would pass. They never did. Instead, I ended up in
another ER (in the city we had just moved to) with doctors doing a
CT scan of my abdomen. They found an 8-cm mass on the head of
the pancreas and told me to contact my primary care physician to
schedule some more tests.
Shortly thereafter I heard those dreaded words, and through all
of the tests, procedures and second opinions, I kept seeing signs
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that things were going to be all right. And so many gifted people
were now in my life to help me through the diagnosis, surgery and
recovery. The surgeon I had, confident and strong, yet so caring
and compassionate. The young intern who sat with me at night
and quizzed me on things so that he could present my case during
rounds. Having a rare form of pancreatic cancer makes you some-
thing of a celebrity.
A few months after my Whipple procedure, I went to a symposium
of the Pancreatic Cancer Action Net-
work. It was at that forum that I knew
what my next purpose was. I had lived
through the frequent trips to the bath-
room after meals, the not knowing
if the twinges and aches I was now
feeling were normal parts of the recovery or not, and the feelings
of extreme fullness after having only eaten three bites of a meal,
but I couldn’t live with the fact that no one knew much about this
insidious disease and that research dedicated to pancreatic cancer
lagged so far behind other major cancers. I got involved, and now
I’m an advocate for others.
As time passes and the medical appointments get farther apart, I
worry a little less. Knowing more about this disease has helped me
become more confident in myself, my faith, and my ability to help
others faced with the same word I once faced: “You have cancer.”
Tammy Andries of Madison, WI, is a volunteer and advocate for
the Pancreatic Cancer Action Network.
Having a rare form of
pancreatic cancer makes
you something of a
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Let symptoms – not age
– influence treatment
I consider myself one of the lucky ones.
A diagnosis of stage III colon cancer at age 17 probably sounds like
a pretty tough blow and not lucky at all. Not to mention a second
diagnosis of stage I colon cancer at age 25 and subsequent sur-
geries and hospital stays to combat my
genetic disease, Lynch Syndrome.
Yet despite the extensive medical
record over the past decade, I still
consider myself extremely lucky when
compared to other survivors.
You see, I’m not alone in my fight. Although colon and rectal cancer
most often appear in those over age 50, it can happen in young
people. In fact, it is happening – and those of us diagnosed under
age 50 make up the fastest growing demographic to be diag-
Screening recommendations for colon cancer don’t typically ap-
ply for those of us still washing our faces with acne cream, going
prom-dress shopping or planning our weddings. But when we walk
into a doctor’s office with symptoms like severe abdominal pain,
I consider myself lucky
because unlike many
survivors also diagnosed
“too young,” I never
got the runaround from
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cramping, bloating and rectal bleeding, we need to be taken seri-
A fellow survivor named Meaghan, stage I colon cancer at age 26,
initially assumed her bleeding and pain came from past pregnan-
cies. The emergency room staff
concurred and offered her pain
pills and suggested a high-fiber
diet. Not until she returned to
urgent care in extreme pain did a
CT scan discover her tumor.
Another friend, Melissa, knew that
“college stress” couldn’t be the
only cause of her pain and blood in the stool. Melissa fought tooth-
and-nail for a referral, yet doctors wouldn’t send her to a specialist.
Luckily, her mom called a gastroenterologist who had a last-minute
cancellation. That appointment discovered her stage III rectal can-
cer at age 20 and saved her life.
I consider myself lucky because unlike many survivors also diag-
nosed “too young,” I never got the runaround from physicians. I
was never told I had irritable bowel syndrome, prescribed antide-
pressants, instructed to simply change my diet or denied medical
My gastroenterologist took aggressive steps and sent my 17-year-
old behind straight into a colonoscopy the day he learned of my
bleeding. I spent only minutes in his office but as soon as the stool
The hands-on approach
from every member of my
medical team not only saved
my life from colon cancer
twice, but it set me up for
survivorship. Now, I have a
long life ahead of me.
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test detected blood, he didn’t cut corners. My dad’s insistence on
him treating me as if I were his teenage daughter led to the dis-
covery of my tumor just days after the appointment. I was treated
based on my symptoms – and not my age.
The hands-on approach from every member of my medical team
not only saved my life from colon cancer twice, but it set me up for
survivorship. Now, I have a long life ahead of me.
No, colon cancer doesn’t often occur in teenagers. But it can. And
thankfully, my symptoms influenced my doctors’ recommendations
and treatment – not my age.
Danielle Ripley-Burgess, a two-time colon cancer survivor, is direc-
tor of communication for advocacy organization Fight Colorectal
Cancer. She was Miss October in the 2009 Colondar, an educa-
tional calendar of young colon cancer survivors that raises aware-
ness of colorectal cancer. She writes about the topic of cancer as
a blogger for Huffington Post and on her blog, Semicolon Stories.
She was among a group of colon cancer survivors that NBC’s
TODAY show interviewed for a segment about Colorectal Cancer
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A wake-up call from a
young e-patient: “I need
to be heard”
Before June 18, 2010, the day I was diagnosed, I knew the medical
system the way that most kids do. I went to the doctor for immu-
nizations, physicals, sore throats and bones that might be broken.
Then, I developed a rash on my joints. I started sleeping more than
normal, was very weak in my muscles, and experienced frequent
stomachaches and headaches.
At the age of 11, after a year of these symptoms, I was diagnosed
with a rare autoimmune disease called juvenile dermatomyositis.
I suddenly was in a whole new medical system. I had to learn to
swallow pills, wait for hours in doctors offices, spend nights in the
hospital, worry about what was happening, deal with some not-so-
nice doctors and nurses, and endure a lot of pain. I also watched
my parents get frustrated with figuring out medical bills and trying
to understand all of the claim statements and appeal denials.
Now I take 21 pills a day, get two infusions a month by an IV, and
give myself an injection once a week. I have more specialists than
my grandparents, and I spend a lot of time as a patient.
This January, I was hospitalized for the second time in four months
for meningitis due to a reaction from a treatment I received. After
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four days of little sleep and an excruciating headache, I made a
video about my hospital experience and posted it online. To my
surprise, the video got a lot of attention. Forbes, Time, the Huff-
ington Post and other outlets wrote about it. I believe that the vid-
eo was popular because my experience was a common one and
struck a nerve with others.
I am appreciative of the care I have been given. I love the hospital
where I get my treatment, and I think it’s a great hospital. The med-
ical students, residents, attending physicians, and specialists are
great doctors. The nurses are also really great. This is not an issue
with the individual people or hospitals. The issue is much bigger,
and it’s the way the system as a whole is designed.
My video had a few main points. I was frustrated that I couldn’t get
any rest in the hospital. The system is designed around the sched-
ules of the doctors and the desire to discharge patients by noon
instead of around the circumstances and needs of the patient. Sec-
ond, the doctors come in individually instead of coming together
and addressing all the concerns at one time. Third, when patients
are awoken from deep sleep, they’re not going to be as engaged
as they would be when they are alert and comfortable. Finally,
patients, and even children and teenagers, appreciate having the
doctor talk with them instead of having the doctors talk over them
or away from them in the hallway.
I’ve been amazed by the hundreds of people who have e-mailed,
commented on posts, direct-messaged me, and blogged about my
video. I’ve been amazed at how many people have shared similar
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stories about how they didn’t get any sleep in the hospital or how
they didn’t feel their doctor listened to them or really tried to un-
derstand. Many patients are fed up with the system being so diffi-
cult to use. I don’t think many people in the health-care system fully
realize that most people needing medical care are already weak,
not feeling well, frustrated, and scared.
The line in my video that people really seem to like is “I am the
patient and I need to be heard.” The system really should be built
around the patient’s needs, goals, convenience, and affordability.
I believe engaged patients get better care. I have learned to be
prepared when the doctors come in, to write down symptoms, and
to be ready with questions or concerns. As I move from being a
teenager to an adult over the next few years, I plan to be a very
engaged patient. I know that I’m my best advocate because I know
my body the best. I have also learned that other patients often
have great experiences to learn from, especially when it is a rare
I’ve been inspired by the response to continue speaking out. I’ve
been asked to be part of patient panels, to write articles, to be on
podcasts and radio shows, and to speak at conferences. I hope
that I can make a difference by giving a voice to patients every-
Morgan Gleason, a sophomore in high school, lives in Florida. She
loves horses and rides as often as possible. She plans to pursue a
career in healthcare. See more at morgangleason.com
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awareness: Beneath the
Over the years, you may have participated in pink-themed races
and donned pink shoe laces in an effort to demonstrate solidarity
and support regarding breast cancer awareness.
Good intentions notwithstanding, let’s pause for a moment to con-
sider what has truly been accomplished since National Breast Can-
cer Awareness Month was launched in 1985. Have fewer people
gotten the disease? Have survival rates improved? The answers
• Mortality rates remain depressingly flat. In 1988 ap-
proximately 40,000 women perished annually from
breast cancer; in 2013 39,620 women and 410 men
will have died from the disease.
• Today, approximately 162,000 women and men are
living with metastatic breast cancer in the U.S. Some
of them developed metastatic disease five, 10, 15, or
even 20 or more years after their initial diagnosis.
Many are relatively young – in their 20s and 30 –
with growing families.
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• A diagnosis of early stage breast cancer provides
no reassurance because the disease will eventually
spread or “metastasize” to other organs in an as-
tounding 30 percent of these patients.
• Median survival after a metastatic diagnosis is only
three years – with no statistically significant improve-
ment over the past 20 years.
Imagine for a moment that you’ve been diagnosed with early stage
breast cancer. You have confidence that if you follow your doc-
tor’s recommendations, you’ll live a normal life – after all, you have
been made “aware” of breast cancer! But that doesn’t always hap-
pen. Take my case: I was diagnosed with early stage breast cancer
at age 39 after 4 years of misdiagnosis. I experienced a double
mastectomy, six cycles of the most toxic chemotherapy available at
the time, followed by five years of Tamoxifen, a hormonal therapy.
I became increasingly convinced that my experience with breast
cancer was safely behind me each time I underwent annual cancer
checkups with normal results.
Fourteen years after my initial diagnosis, I developed a dry, per-
sistent cough that three doctors misdiagnosed as asthma, GERD,
or post-nasal drip. After four years of chronic coughing I became
hoarse. Finally a doctor recognized that my vocal cord was para-
lyzed. He ordered a scan that revealed a tumor pressing on the
laryngeal nerve, which in turn caused paralysis.
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A biopsy revealed metastatic breast cancer that was hormonally
receptive. By then I had developed multiple lung tumors, a liter of
malignant pleural effusion and peri-
cardial effusion. A catheter was in-
serted in my chest to drain the fluid
until it disappeared several weeks
later. Weak, ill, and terrified, I didn’t
know whether I would live for an-
other year and was determined to
be as active as possible to enhance
my odds of survival.
Although my oncologist recommended chemotherapy, I sought a
second opinion from an oncologist who suggested hormonal treat-
ment that has thankfully allowed me to enjoy a better quality of
life. I also consult with a naturopathic oncologist regarding supple-
ments and complementary therapies, and I’ve adjusted my diet to
exclude sugar and processed foods.
My medical team is rounded out by a wonderful acupuncturist
whose skills have enabled me to avoid anti-depressants. For emo-
tional support, I exchange encouragement and information with
people online who are coping with metastatic disease, and my
husband has retired early so that we can enjoy time together while
I am still well enough to do so.
After eight years of misdiagnosis, I’m left with little faith in the diag-
nostic capabilities of the medical establishment and have no illu-
sions about living a normal life. Yet I’m one of the lucky ones: rela-
After eight years of
misdiagnosis, I’m left with
little faith in the diagnostic
capabilities of the medical
establishment and have
no illusions about living a
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tively old (age 60), not on chemotherapy, able to participate in daily
activities, and currently pain-free. Conversely, most patients I know
suffer terrible side effects from both their cancer and its treatment,
such as fatigue, nausea, blistering skin, neuropathy, and excruciat-
ing bone pain.
In retrospect, I wouldn’t change any decisions regarding my dis-
ease and its treatment. But I have to realize that “early stage”
breast cancer, with which I was initially diagnosed, is significant-
ly more lethal than the media conveys – given that nearly one of
three early-stage patients will eventually succumb to their disease.
It’s obvious that the battle against breast cancer, with incessant em-
phasis on “awareness” and early detection, has been watermarked
upon the canvas of failure. Increasing awareness – especially when
it’s been heavily sugarcoated – will never alter the course of this
disease or reduce the victim count. Only by deriving a mechanism
to irrefutably prevent breast cancer and effectively treat those who
already have it will we forever close the book on stories such as
Anne Loeser of Salt Lake City, UT, is a retired software project
manager who was diagnosed with metastatic breast cancer 18
years after developing “early stage” disease. A passionate re-
searcher, she continuously shares information and support on
multiple forums with others who are dealing with terminal breast
cancer. Anne currently resides in Salt Lake City, Utah with her hus-
band and parrot.
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Living with Ehlers-Danlos
Syndrome: “Sometimes I
just don’t have it in me to
I have a connective tissue disorder named Ehlers-Danlos Syn-
drome. It’s a genetic collagen defect that results in super lax liga-
ments and tendons, creating frequent joint dislocations, cartilage
tears, chronic muscle spasms, and much more. May is Ehlers-Dan-
los Awareness Month.
Every EDS patient knows that one of the hardest parts of our day
is the moment we open our eyes and waken into the reality of our
Usually I take this opportunity to say something inspiring, about
how my illness has changed me for the better and given me a clear
purpose in life for both the work I do and the person I want to be.
While all these things are true, the fact is that sometimes I’m in a
physical state where I just don’t have it in me to be inspirational.
And that’s all right – inspirational words are meaningless without
the context of genuine human struggle. So, if you’re interested –
and if you’ll bear with me – I’d like to take this opportunity to talk
about EDS in its rawest sense, and to do my part to tell you about
the very serious disease it is.
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When I was a child, I got sick… and I never got better. And I never
will. When I was finally diagnosed with EDS, it was made clear to
me that there was no cure for my condition. The best we could do
was try to manage and slow the symptoms – symptoms that were
pretty much guaranteed, in the long run, to get worse. I have done
the best I can with this knowledge. I’ve tried to make the most of
the life I’ve been given, and whenever possible to keep a smile on
my face and hope in my heart. But it’s been very hard. Every EDS
patient knows that one of the hardest parts of our day is the mo-
ment we open our eyes and waken into the reality of our bodies,
stirred from dreams of ourselves as we used to be, and the futures
we imagined we’d have.
EDS is considered a rare disease, but every
year the suspected percentage of those
afflicted rises dramatically. The disease is
notoriously underdiagnosed because doc-
tors themselves don’t usually know about
it, and are only able to start diagnosing patients when a textbook
case (such as myself) walks into their office and physically demon-
strates what it is. The devastating irony is that EDS is actually one
of the simplest diseases to diagnose – all you really need is a
protractor, and an online guide to a system of criteria known as
the Beighton Scale. Then take this to your doctor for confirmation.
When I performed these tests on myself a few years ago and then
went to my doctors asking, “What do you know about Ehlers-Dan-
los Syndrome?” the deer-in-the-headlights look was as unanimous
as it was unnerving.
inspirational words are
the context of genuine
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So for anyone out there suffering
from chronic pain, or other strange
symptoms, please look into this. Or if
you have a friend in physical distress,
please pass on this information. EDS
is a scary and challenging diagnosis, but the consequences of not
knowing are far greater than that of a correct diagnosis. EDS symp-
toms can range from the very mild to the extremely severe. One
thing is certain, though: If I had received a diagnosis back when my
symptoms were mild, I would be living a very different life now. Ev-
ery single day, in my struggle to actualize the person I still can be, I
cannot help but mourn the person I could have been.
To the many people out there reading this who have EDS, or any
other chronic illness, “invisible” or not – thank you for being my
brothers and sisters. Take care of yourselves, and take care of
each other. And remember that healing others may very well be
the clearest path to healing ourselves.
Michael Bihovsky is a musical theater composer and performer,
and an “invisible illness” advocate. He is best known for his viral
YouTube video “One Grain More,” a musical parody of Les Miser-
ables about the plight of the food allergy community. Michael has
also written an originalmusical, “Fresh!,” which tells the semi-au-
tobiographical story of a group of college freshmen overcoming
physical and emotional adversity amidst the craziness of college,
and he is currently writing a book titled “Live Because: The Phi-
losophy of the Broken, and the Journey Toward Wholeness.” For
more information, visit www.livebecause.com.
And remember that
healing others may very
well be the clearest path to
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Empowered is as empowered
does: Making a choice about
living with lupus
Pattie Brynn Hultquist
“How do you do it?”
I get it. A mother of five, a wife, a childcare provider, president of
the condo board. Chartered herbalist, scrapbook design team
member, wool and fiber spinner, avid camper. Yoga enthusiast, a
weight-training type-2 diabetic – the list continues.
How, exactly, does one manage living with an autoimmune disease
like lupus: the disease of a thousand faces, the epitome of “You
don’t look sick”?
When I first received my diagnosis of systemic lupus erythemato-
sus I was devastated not only for myself but for my family, friends
and extended personal communities. It wasn’t just me receiving a
diagnosis on that brilliantly colored fall day in 2010; it was my entire
Lupus can affect people very differently. Some people have skin
issues. Some have joint pains. Some, like myself, also have had a
heart attack, pericarditis and kidney issues that makes taking medi-
cations a game of pharmaceutical roulette: sometimes, medications
makes me feel worse.
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That isn’t living. That’s existing.
I joined forum after forum, community after community, group after
group, all over the Internet. I had to know how to live with an au-
toimmune disease. What I found were either the “Whine-1-1” or the
“Positive 24/7!” I left them all.
I felt a little like Neo when offered a choice between the red pill
and the blue pill.
Taking neither and forging my own way through this made-for-TV-
movie kind of life living with a chronic disease.
I started a blog. I started sharing how I, a mother of five in the cha-
os of my reality, was living with lupus. I wrote about the good, the
bad, the ugly, and the deliriously exhausted life I live. It struck a
chord with many who know chronic illness for its complexity. There
were so many people experiencing the very same thing!
I went from blogger to globally recognized health advocate. And
one day I told my primary care physician about my writing. I told
her about how many people are suffering in silence because they
feel “invisible” not just with their health-care teams, but with friends
and even family. I even told her about how I felt that way, myself.
She told me, in all honesty, that she had never really considered
the magnitude of social effects that someone’s diagnosis can engender.
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I was stunned. Sure, she had mentioned my husband and children
at our appointments, yet she conceded that she had simply not
considered event invitations no longer extended (I simply can’t
commit to one way or another because lupus can flare up at any
given time with pain, exhaustion or sickness), or, of having often to
redefine my abilities and seek out new friendships in order to keep
proactively engaged in life.
That was the day I illustrated the research, networking and usage
benefits of social media as my outlet, and she became empowered
to begin treating the socio-emotional impact of health care: how
interpersonal communities and social media can be a powerful tool
in the health-care toolbox for individual patients.
The result? I was validated by the health-care professional who is
most intimately aware of the clinical and physical demands of this
disease on my body and how it affects my entire social network.
Validation heightens my confidence to be a proactive patient. Pro-
active behavior advances whole-body health care and awareness.
Choice is a beautiful thing.
Pattie Brynn Hultquist, C.H., is a globally recognized lupus and
chronic illness health advocate at her blog, Lupus Interrupted. A
team captain for the Walk for Lupus, held annually, she partici-
pates in fundraising efforts at Gold Award levels for Lupus Ontario.
She can be found on multiple social media platforms sharing in-
formation, resources and the realities of living with chronic condi-
tions, her supportive family always within reach.
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“As a young lung cancer
patient, I had to find
my own path”: Fighting
stage IV with full force
Emily Bennett Taylor
When I was diagnosed at age 28 with stage IV lung cancer (yes,
you read that right: 28. Non-smoker, college athlete, lung cancer), I
wanted to shout it from the rooftops. No, not in the joyous, “share-
my-news” type of way. The concept was so unfathomable that I
sometimes felt the only way it would really sink in is if I screamed it
out loud in public. I didn’t, of course. While many social norms, like
dressing to leave the house or even showering, went completely
out the window as I underwent treatment, I’m happy to report that
I managed to maintain at least a semblance of sanity in public. And
I’ve thankfully found better venues – such as this article – to share
I learned very quickly that as a young lung cancer patient, I had
to find my own path. In a cancer normally associated with older
smokers, I was constantly telling my doctors: “I’m different. I’m
strong. I want to be as aggressive as possible.” Standard of care
is to treat stage IV patients palliatively, but that didn’t sit well with
me – I wanted a cure. I was told “no” to surgery countless times. I
kept seeking second, third, multitudes of opinions in order to find
a doctor who would see me as the young, strong person I was with
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my whole life ahead of me.
While I tested negative for all known genetic mutations (I know
one is out there – please find it for me!), I was fortunate to be part
of a small percentage of patients who respond to traditional che-
motherapy. After six rounds of carboplatin, Alimta and Avastin, and
two additional infusions of Avastin, I found my white knight in Raja
Flores, MD, of Mount Sinai Hospital. My husband and I relocated
from our home in California to New York City for three months, and
on February 8, 2013, Dr. Flores removed my entire right lung, pleu-
ra, half my diaphragm, all mediastinal lymph nodes, and the peri-
cardial sac (around my heart), which he rebuilt with Gore-Tex.
Three weeks into my recovery, I be-
gan a follow-up course of 28 rounds
of high-dose radiation to my right
lung cavity. If there were any cancer
cells left, Dr. Flores and I intended
to fry them into oblivion – even if side effects had me vomiting and
nauseated for the better part of six weeks, and exhausted for an-
other six months.
My reward? Dr. Flores declared me N.E.D. – No Evidence of Dis-
ease. I’ve lived with that diagnosis for almost a year and a half now,
and it feels fantastic.
Is life with one lung difficult? Sometimes. But the most important
thing to me is that it’s still life. Lots of surgeons told me “no” be-
cause they believed removing a lung would diminish my “quality of
I was constantly telling
my doctors: “I’m different.
I’m strong. I want to be as
aggressive as possible.”
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life.” For me, losing a lung meant gaining my life, and that’s a trade-
off I think any patient would make if given the choice.
If you’re a medical student looking for an area where you can make
a serious impact, consider lung cancer. In the past few decades,
survival rates for other major cancers (breast, prostate, colon) have
increased to well above 50 percent, some reaching the upper 90s.
Lung cancer, the nation’s No. 1 cancer killer? A dismal 16.8 percent.
This is a field ripe for advancement. We need researchers devel-
oping better treatments and methods of early detection. We need
doctors who both understand that the face of lung cancer is chang-
ing and are also willing to push the envelope with their patients to
find an individualized, aggressive cure.
Every lung cancer is different, and every patient deserves a treat-
ment plan with the goal of preserving life. You can be the differ-
ence. You can make an impact. And you can change the course of
someone’s life, just like Dr. Flores did for me.
Emily Bennett Taylor, a former state track champion, college vol-
leyball player, and finance manager, is now a Stage IV lung can-
cer survivor and spokesperson/patient advocate for the Bonnie J.
Addario Lung Cancer Foundation. Her story has been highlighted
on the Steve Harvey Show, the Atlantic Monthly, and on her blog
– EmBen Kicks Cancer – named to Healthline’s Top Lung Cancer
Blogs in 2013 and 2014. She writes candidly about her treatment
and life with one lung, as she works to raise awareness about the
leading cancer killer. Emily lives in Southern California with her
husband Miles and their two lovable mutts, Ginny & Tonic.
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Managing a prostate
cancer diagnosis: From
leader to follower, and
Caring for others has always been part of my approach to life. I
built my career in health care serving as the CEO of a statewide
non-profit foundation, in addition to being the CEO of seven di-
verse types of hospitals. Naturally, I was intimately familiar with the
steps necessary for a person to become an empowered patient.
But when I was forced into the role of being the patient, the initial
transformation was surprisingly more intense and unsettling than I
had imagined it would be.
Managing prostate cancer is a battle. Recognize it as such. In-
vest the time and energy necessary to empower yourself with the
knowledge you’ll need to make informed choices about your path
When a person is diagnosed with any type of cancer, the obvious
objective is to get rid of it completely as quickly as possible. After
being diagnosed with prostate cancer in 2002 and doing my due
diligence, I ultimately decided that a radical prostatectomy was the
best course of treatment for me. I had the surgery in 2003, and I’m
very happy to report that I’ve been cancer-free ever since. How-
28Table of Contentswww.Inspire.com
ever, it’s important to recognize that there’s not a one-size-fits-all
solution for treating prostate cancer.
In response to prostate cancer diagno-
sis, it’s critical to take a step back, take
a few deep breaths, and try to approach
the situation calmly and logically. Don’t
let anyone rush you. There’s ALWAYS
time to evaluate the medical options and
get a second opinion from another medical expert who ideally is
not affiliated with the same practice as the physician who provid-
ed the initial diagnosis or treatment recommendations. Know that
watchful waiting or active surveillance can be viable options. Every
treatment has side effects, which typically include erectile dysfunc-
tion and/or incontinence. The skill of the physician and the amount
of experience specific to the procedure being performed are very
important in minimizing the presence and ongoing impact of these
Some guys pursue their treatment and quietly return to business as
usual without ever talking about their prostate cancer or its side ef-
fects. While I respect the option of maintaining privacy, I encourage
anyone who’s facing a diagnosis of prostate cancer to reach out
for help from others who have already traveled the same path, and
to reciprocate down the line by helping others who will be grap-
pling with the involuntary transition into joining the prostate cancer
community. Also recognize that prostate cancer affects spouses
or partners, as well as family members. Their support is also very
it’s important to
recognize that there’s
not a one-size-fits-all
solution for treating
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Being my nature of wanting to help others, I’ve been very active
with the James Cancer Hospital support group, an affiliated chapter
of Us TOO International in Columbus, Ohio. I know from experi-
ence how valuable a support group can be as the platform for peer
interaction to learn from other prostate cancer survivors who’ve
“been there and done that.” The camaraderie developed in the
support groups often impacts local communities by raising aware-
ness and money for prostate cancer through high-visibility activities
such as beer tasting events, mustache and beard shaving events,
swimming races, running races and walks.
Managing prostate cancer is a battle.
Recognize it as such. Invest the time and
energy necessary to empower yourself
with the knowledge you’ll need to make
informed choices about your path of
treatment. Develop a strategy, find the
best medical team, and fight back with
the support of your fellow warriors.
Jim Rieder retired in 2001 after more than 40 years of executive
hospital leadership. In addition to being a consumer reviewer for
the Congressional Directed Medical Research Program for Pros-
tate Cancer, he actively serves as a community leader with the
Ohio State University James Cancer Hospital support group, an
affiliated chapter of Us TOO International. He has been on the Us
TOO International board of directors since 2010 and was elected
chairman of the board in 2013.
I encourage anyone
who’s facing a
diagnosis of prostate
cancer to reach out for
help from others who
have already traveled
the same path
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So my life will be shorter
than I’d hoped – what
should I do differently?
“The news of your demise has been greatly exaggerated,” joked
the surgeon when realizing I might have a rare slow-growing can-
cer instead of the horrifically aggressive and deadly adenocarcino-
ma of the pancreas that everyone thought I had.
He was right. I had “stage 4” Pancreatic Neuroendocrine Tu-
mor metastasized to my liver. This was good news because it’s a
Figuring out what to do with my life – not getting surgery – is
what’s most urgent and important to me.
It’s also the cancer that Steve Jobs had (and died from).
I fired my surgeon and my oncologist. Not because of his humor,
but because of the urgency he placed on taking out my duodenum,
gallbladder, spleen, part of my stomach and my entire pancreas in
a “procedure” called a Whipple. No other options were considered
or offered. No calls to a PNET specialist were made – so I found
one on my own.
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I was also told: There is no cure. There is no remission. Treatment
options are limited and inconsistent. It’s possible that surgery might
have bought me more time – but my new care team understood
that I favored quality of life (hence my decision to opt out of sur-
gery) over length of my life. And thankfully, some new treatments
not available in Steve Jobs’ time have worked to shrink my tumors
by sixty percent.
Though we’re fighting to keep the
tumors from growing again for as long
as possible, it sure looks like I won’t
be around as long as I’d hoped. And though the drugs are helping
control this beast, I know they won’t help forever and there will
be pain and fatigue and other quality-of-life issues. So figuring out
what to do with my life – not getting surgery – is what’s most ur-
gent and important to me.
My work. Should I quit my job like so many of my fellow PNET
patients have? No way! I love my job, and it has only gotten better
since my diagnosis. Seemingly by providence, last year my position
was changed and I now head development of patient engagement
software for the large health-care solutions firm I work for. I have
the opportunity to directly help tens of millions of patients – pa-
tients like me.
My family. I have a wife and three teenagers. How can I create
more time to make memories with them while I still feel good? I
now pay someone else to mow my lawn and perform those other
maintenance services that previously consumed much of my week-
Should I quit my job like
so many of my fellow
PNET patients have?
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end time. We live in Florida where there’s a lot of fun things to do
as a family, so we do it – spending more time together than we
used to. We also blew some savings for a family vacation to Turks
and Caicos. We’ve never vacationed like that before and it was
awesome – something that created good memories. I want to do
something like that again.
My everyday life. Fewer things to wor-
ry about means less stress. After I was
diagnosed, we gave away more stuff
than we kept and we don’t miss it. All
bills are now auto-paid so we don’t think about them and can’t miss
a payment. We have one debit card and one credit card, and we
pay for most things in cash. And we learned to say “no,” as we lim-
ited our obligations to maximize our free time. I’ve also tried new
things: So far I’ve learned how to ride a horse and how to cook. Up
next, skeet shooting.
I continue to rethink and reprioritize my life, and I’m thankful that
my new care team understands what’s important to me and pro-
vides treatment that aligns with my goals.
Dave Staudenmaier is Senior Director of Development for Green-
way Health, where he leads an awesome team creating software
products benefiting patients and physicians. Dave continues to
fight PNET with the support of his wife of 23 years and three chil-
After I was diagnosed,
we gave away more
stuff than we kept and
we don’t miss it.
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My last promises to her:
Advocate for lung cancer
awareness and live life to
I was diagnosed with Stage 4 Non-Small Cell Lung Cancer in June
2009. I have had numerous treatments of radiation and chemother-
apy for the lung cancer, and six cycles of Gemzar for metastasis
to my liver. I’m one of the fortunate few because only 16.8 percent
ever reach the five-year mark. I’m stable today because of the
targeted therapy pill Tarceva that I’ve been taking for almost five
All through my journey I have kept a positive attitude, focused on
good nutrition and gotten plenty of exercise. I try to live my life by
spiritual principles. I feel they all play an important part in my recov-
ery and the reason that I’m still above ground.
The bad news is that I have cancer. The good news is that cancer
has taught me to live life to the fullest. I never allow cancer to de-
fine me. I rarely miss an opportunity to hike, bike, or do anything
that strengthens my immune system and keeps me out in nature.
In October 2011 I met Penny Blume, the love of my life, on a lung
cancer support community on Inspire. Penny left this earth on Jan.
21, 2014 after battling small cell lung cancer for 32 months. Penny
34Table of Contentswww.Inspire.com
and I spent our time together traveling back and forth from New
York to California. She passed at my home in Santa Rosa, Calif.,
after trying one last clinical trial at Stanford Cancer Center.
Penny and I turned to each other for emotional support to battle
our cancers and fell in love. It was after a couple of months of tex-
ting and chatting on social media that we decided to meet. Penny
flew to California for her first visit in January 2012, and the rest is
My relationship with Penny also
marked the beginning of my advocacy
work for lung cancer. It started when
a friend of ours asked us to post our
story on a lung cancer survivors group
on Facebook. I posted something,
and then Penny and I decided to repost it on Inspire, since it was
the site that brought us together. In September 2012 our story was
shared by ABC News and Good Morning America. In the following
weeks, it was shared and tweeted all over the world.
My efforts to share our story and talk about lung cancer publicly
have only grown stronger since then. I support Team Draft, an ini-
tiative of the Chris Draft Family Foundation, which is dedicated to
raising lung cancer awareness and increasing badly needed re-
search funding by shattering the misconception that lung cancer is
a “smoker’s disease.” I’m also an advocate for The Lungevity Foun-
dation and have attended two of their Hope Summits in in 2012 and
2013 and participated in numerous medical advisory panels. (Penny
My efforts to share our
story and talk about lung
cancer publicly have
only grown stronger
35Table of Contentswww.Inspire.com
attended our first Hope Summit in 2012 where we recorded this
message of Hope.)
Two years ago I was nominated by Lungevity to be a consumer re-
viewer for the Medical Directed Lung Cancer Research Program for
the Department of Defense. As a veteran and lung cancer survivor
I’m particularly grateful I can do my part through the DOD program.
November is Lung Cancer Awareness Month, and it will be a busy
month for me: I’m doing events with Chris Draft, Genentech and
the Lung Cancer Research Program.
My last promises to Penny were that I would continue to live life to
the fullest and advocate for lung cancer research and awareness.
One day at a time I try to keep those promises to her.
Don Stranathan is a business development manager for a tech-
nology company in Rohnert Park, CA, who is now on disability, as
“fighting my cancer has become a full time job.” When not doing
advocacy work, he is at the gym spinning or out hiking, biking and
fishing with friends and family.
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How I’ve survived
When I was in my second month of treatment for late-stage ovarian
cancer I read a friend’s post on Facebook about her friend passing
away from cancer after just six weeks of being diagnosed. I was
so sad about this news and about the fact that I had made it past
six weeks and she hadn’t. Then when I was a few months out from
finishing chemotherapy and back to teaching in Saudi Arabia, I
found out that the woman who helped me when I was just starting
treatment had passed from her five-year battle with ovarian cancer.
I was again saddened, but even more so than before. This woman
was just fifty years old and had a husband and children – she had
so much life ahead of her. And that’s when survivor’s guilt first truly
I didn’t know that “survivor’s guilt” was the name of what I was
feeling. I just knew that a part of me was torn. Torn between being
so very grateful that I had made it (even though it hadn’t been very
long) and anguished over knowing that I still here and this woman
wasn’t. I did my best to not let the guilt bring me down too much: I
kept moving forward, living each day to the fullest, and staying pos-
itive through all the post-chemotherapy problems I had. But every
once in awhile I would get that feeling of sorrow from the guilt that
I survived and that so many others didn’t. I would read article after
article about men, women, and/or children who lost their battle,
37Table of Contentswww.Inspire.com
and I would start to ask “why?” even more. Why them and not me?
I had no significant other in my life. I had no children who needed
me. “So, why am I still here?” is what I would ask and think about. If
I thought too long about it I would start to cry, and as I cried I would
call out to God and ask Him why. The answer that I believe God
gave me was that that even though I didn’t have a significant other
and children, I had people who loved me and needed me in their
lives. And I still had some purpose here on Earth.
Did survivor’s guilt go away? No, and I don’t think it ever will – not
completely. That said, something feels different each time that guilt
pops up now. I don’t dwell on it. I remember those who love me.
I think about all the ovarian-cancer awareness advocating I have
done and will continue to do. I share my story in the hopes that
other women will listen to their bodies thereby getting them to go
to the doctor sooner rather than later. I share my story in the hopes
that other survivors will share their stories too. Because when more
people share their stories, more awareness will take place. And
awareness is knowledge and knowledge is power.
For me, the way to survive survivor’s guilt is to live a life of purpose.
To do more with giving back. And to remember that survivor’s guilt
can rule you or you can rule it. I’ve chosen to rule it. I know it will
come and it will go, but it doesn’t have to stay. Not unless I let it.
And I don’t, I won’t.
Hope Aguilar is a teacher of the English language in Saudi Arabia,
and the author of the book “HOPE Through Cancer.” The native
Texan is also a veteran of the U.S. Navy and Army.
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The art of healing
“There’s no cure or additional treatment as all viable options are
exhausted. This is your new normal.”
My gastroenterologist was stating the obvious, yet I stared at him
with incredulity. I’d had my second pancreatectomy a year prior,
and it failed to control my critical and idiopathic hypoglycemia and
pain. I was now receiving my nutrition via IV since repeated sur-
geries had reduced my ability to digest and absorb food, creating
erratic swings in blood sugar necessitating constant monitoring. I
was stunned that this was how things would be from now on.
I cried after that appointment as images
of my life prior to getting sick flashed
before my eyes. Until three years earli-
er, I had been working as a registered
dietitian and diabetic educator, I cared
for two busy teens, and I lived a life rife
with joyful spontaneity. After a few week of impenetrable sadness
I raged at God for condemning me to this life of constant pain and
uncertainty. Why me? How could I be so sick when I lived such a
healthy and active lifestyle? I knew I needed help to cope with this
transition. Chronic illness was a dark and unfamiliar place. At 50,
my life as I knew it was over.
I had always been a bibliophile, and I used audio books when I was
How could I be so
sick when I lived such
a healthy and active
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too ill to read. Music was inspiring and while I had countless songs
on my iPod it didn’t fill my days. My counselor gently encouraged
me to try something new, so I decided to visit my local art store
and see if there was anything of interest. I’d taken classes over the
years but didn’t consider myself an artist, so I walked through the
door with trepidation. But I was immediately welcomed by a knowl-
edgeable artist who took me in hand. We walked down the aisles
and she spoke with ardent enthusiasm about the different mediums
available to me. When I saw the rainbow of acrylic paints I made my
decision: I was going to paint.
Immediately following my purchase, I had buyer’s remorse. What
did I know about painting? I had been encouraged to pursue excel-
lence, and this was akin to jumping off the proverbial cliff. It took
two weeks before I prepared my first canvas and put brush to pa-
per. And what transpired next surprised me.
When I was painting, time was suspend-
ed. I allowed my hand to traverse the
canvas as it become more than a picture
to be framed but an outlet for feelings I
had buried. I hung the canvasses on my
wall to serve as a reminder that I was
perfectly imperfect. The initial paintings were comprised of bold
brush strokes, heavily textured and dark tints. I had no precon-
ceived notion of what the painting should look like and allowed
my heart to show me the way. Grief and despair were evident as I
poured my deepest emotions onto canvas.
As time passed, I noticed my palette had become far lighter and
Grief and despair were
evident as I poured
my deepest emotions
40Table of Contentswww.Inspire.com
exuded shades of pinks, purple, gold and blues representing a
lightness of being. I became hopeful and wondered if there were
others using art as a means to cope. I learned that the answer is
a resounding yes. Art therapy is defined
as “a medium that encourages people to
express and understand emotions through
artistic expression.” It has been shown to
reduce stress, alleviate pain and serve as
a conduit to self-discovery and emotional growth. Traditional art
therapy involves visual media such as painting and sculpting and is
growing in scope to include music, film dance and writing.
As I embrace painting and journaling now, there is hope. Life is full
of unexpected events including illness; we can’t understand the
whys. There are still days where the tears roll unabashedly down
my cheeks as I am overcome with sorrow. But I have something to
look forward to and feel I’m making a difference. In the words of
Henry Ward Beeher, “Every artist dips his brush into his own soul,
and paints his nature into the pictures.”
Pamela Schepis of Syracuse, NY, retired after 25 years of working
as a registered dietitian and diabetic educator. An advocate for
the mind-body connection, she is writing about her experiences to
help others find joy and hope when chronically ill. She continues
to paint, and as a former musician, has begun playing piano. Her
children and husband of 27 years are her greatest passion.
See next page for some of Schepis’ artwork.
As I embrace painting
and journaling now,
there is hope.
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Watercolor and ink