Experts by Experience 2015: A compilation of patients’ stories

together we’re betterSM

A compilation of patients’ storiesDeveloped in cooperation with Stanford Medicine

IntroductionBrian Loew

ForewordBenjamin F. Miller, PsyD

A rare cancer survivor’s journey to thriving and advocatingTammy Andries

Let symptoms – not age – influence treatmentDanielle Ripley-Burgess

A wake-up call from a young e-patient: “I need to be heard” Morgan Gleason

Breast Cancer Awareness: Beneath the pink packagingAnne Loeser

Sometimes I just don’t have it in me to be inspirationalMichael Bihovsky

Empowered is as empowered does: Making a choice about living

with lupus Pattie Brynn Hultquist

Fighting Stage IV with full forceEmily Bennett Taylor

From leader to follower and back againJim Rieder

My life will be shorter than I’d hoped--What should I do differently? Dave Staudenmaier

My last promises to her: Advocate for lung cancer awareness and

live life to the fullestDon Stranathan

How I’ve survived survivor’s guiltHope Aguilar

The art of healingPamela Schepis

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TABLE OF CONTENTS

3Table of Contentswww.Inspire.com

EXPERTS BY EXPERIENCE 2015Introduction: Brian Loew

Welcome to Experts by Experience 2015, our third

installment of columns written by patients for Stanford

Medicine’s blog.

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

Chu, MD.

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.

Brian Loew

CEO

Inspire

If you’d like to read the prior installments in our “Experts”

series, here is the 2014 edition and the 2013 edition.

http://scopeblog.stanford.edu

http://www.slideshare.net/TeamInspire/experts-by-experience2014-32485553

http://www.inspire.com/static/inspire/reports/inspire-stanford-experts-by-experience-report.pdf


FOREWORDBenjamin 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

change?

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 influence.


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

change.

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

Medicine

Our stories are our power.

http://farleyhealthpolicycenter.org

http://farleyhealthpolicycenter.org


A rare cancer survivor’s journey to thriving and advocating

Tammy Andries

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


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 celebrity.

https://www.pancan.org


Let symptoms – not age – influence treatment

Danielle Ripley-Burgess

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-

nosed.

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 physicians.


cramping, bloating and rectal bleeding, we need to be taken seri-

ously.

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

exams.

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.


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

Awareness Month.

http://fightcolorectalcancer.org

http://fightcolorectalcancer.org

http://semicolonstories.com


A wake-up call from a young e-patient: “I need to be heard”

Morgan Gleason

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


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

https://www.youtube.com/watch?v=iVt3eHAsdK4


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

disease.

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-

where.

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

http://mor¬gangleason.com


Breast cancer awareness: Beneath the pink packaging

Anne Loeser

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

are disconcerting:

• 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.

http://www.nationalbreastcancer.org/breast-cancer-awareness-month

http://www.nationalbreastcancer.org/breast-cancer-awareness-month


• 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.


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 normal life.


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

mine.

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.


Living with Ehlers-Danlos Syndrome: “Sometimes I just don’t have it in me to be inspirational”

Michael Bihovsky

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

bodies

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.


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 meaningless without the context of genuine human struggle.


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 healing ourselves.

https://www.youtube.com/watch?v=k9QbC41oQRo

www.livebecause.com


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

social network.

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.


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.

My choice?

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.


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.

http://www.lupusinterrupted.com


“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

my story.

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


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.”


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.

https://embenkickscancer.wordpress.com


Managing a prostate cancer diagnosis: From leader to follower, and back again

Jim Rieder

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

of treatment

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-


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

side effects.

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

important.

it’s important to recognize that there’s not a one-size-fits-all solution for treating prostate cancer.


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

http://cdmrp.army.mil/pcrp/

http://www.ustoo.org


So my life will be shorter than I’d hoped – what should I do differently?

Dave Staudenmaier

“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

slow-growing cancer.

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.


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?


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-

dren.

After I was diagnosed, we gave away more stuff than we kept and we don’t miss it.


My last promises to her: Advocate for lung cancer awareness and live life to the fullest

Don Stranathan

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

years.

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


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

history.

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


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.

http://www.teamdraft.org



How I’ve survived survivor’s guilt

Hope Aguilar

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

hit me.

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,


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.



The art of healing

Pamela Schepis

“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 lifestyle?


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 onto canvas.


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.


Acrylic explosion

New beginning -acrylic

Acrylic compilation

Watercolor and ink


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Experts by Experience 2015: A compilation of patients’ stories

Healthcare

Transcript of Experts by Experience 2015: A compilation of patients’ stories