Experts by Experience 2015: A compilation of patients’ stories

1. together we’re better SM A compilation of patients’ stories Developed in cooperation with Stanford Medicine

2. Introduction Brian Loew Foreword Benjamin F. Miller, PsyD A rare cancer survivor’s journey to thriving and advocating Tammy Andries Let symptoms – not age – influence treatment Danielle Ripley-Burgess A wake-up call from a young e-patient: “I need to be heard” Morgan Gleason Breast Cancer Awareness: Beneath the pink packaging Anne Loeser Sometimes I just don’t have it in me to be inspirational Michael Bihovsky Empowered is as empowered does: Making a choice about living with lupus Pattie Brynn Hultquist Fighting Stage IV with full force Emily Bennett Taylor From leader to follower and back again Jim 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 fullest Don Stranathan How I’ve survived survivor’s guilt Hope Aguilar The art of healing Pamela Schepis 3 4 6 8 11 14 18 21 24 27 30 33 36 38 TABLE OF CONTENTS

3. 3Table of Contentswww.Inspire.com EXPERTS BY EXPERIENCE 2015 Introduction: 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.

4. 4Table of Contentswww.Inspire.com FOREWORD 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 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 system 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 underway 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.

5. 5Table of Contentswww.Inspire.com 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 healthcare 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.

6. 6Table of Contentswww.Inspire.com A rare cancer survivor’s journey to thriving and advocating Tammy Andries When I was first diagnosed with a neuroendocrine pancreatic tumor 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 emergency 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

7. 7Table of Contentswww.Inspire.com 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 something 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.

8. 8Table of Contentswww.Inspire.com 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 diagnosed. 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.

9. 9Table of Contentswww.Inspire.com 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 cancer at age 20 and saved her life. I consider myself lucky because unlike many survivors also diagnosed “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.

10. 10Table of Contentswww.Inspire.com 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 discovery 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 director 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 awareness 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.

11. 11Table of Contentswww.Inspire.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

12. 12Table of Contentswww.Inspire.com 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 video 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 medical 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

13. 13Table of Contentswww.Inspire.com 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 understand. Many patients are fed up with the system being so difficult 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

14. 14Table of Contentswww.Inspire.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 consider 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 approximately 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.

15. 15Table of Contentswww.Inspire.com • 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 doctor’s recommendations, you’ll live a normal life – after all, you have been made “aware” of breast cancer! But that doesn’t always happen. 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.

16. 16Table of Contentswww.Inspire.com 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 another 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 treatment 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 emotional 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 diagnostic capabilities of the medical establishment and have no illusions 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.

17. 17Table of Contentswww.Inspire.com 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 excruciating bone pain. In retrospect, I wouldn’t change any decisions regarding my disease 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 husband and parrot.

18. 18Table of Contentswww.Inspire.com 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.

19. 19Table of Contentswww.Inspire.com 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 moment 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 doctors 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.

20. 20Table of Contentswww.Inspire.com 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 symptoms 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.

21. 21Table of Contentswww.Inspire.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 medications a game of pharmaceutical roulette: sometimes, medications makes me feel worse.

22. 22Table of Contentswww.Inspire.com 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 autoimmune 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.

23. 23Table of Contentswww.Inspire.com 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 information, resources and the realities of living with chronic condi- tions, her supportive family always within reach.

24. 24Table of Contentswww.Inspire.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

25. 25Table of Contentswww.Inspire.com 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 chemotherapy. 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 another 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” because 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.”

26. 26Table of Contentswww.Inspire.com 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 developing better treatments and methods of early detection. We need doctors who both understand that the face of lung cancer is changing 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 treatment plan with the goal of preserving life. You can be the difference. 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 cancer 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.

27. 27Table of Contentswww.Inspire.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-

28. 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 diagnosis, 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 effects. 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.

29. 29Table of Contentswww.Inspire.com 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 experience 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 awareness 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

30. 30Table of Contentswww.Inspire.com 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 cancer 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.

31. 31Table of Contentswww.Inspire.com 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 surgery) 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 urgent 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 – patients 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?

32. 32Table of Contentswww.Inspire.com 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 worry 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 limited 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 provides 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 children. After I was diagnosed, we gave away more stuff than we kept and we don’t miss it.

33. 33Table of Contentswww.Inspire.com 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 chemotherapy 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 recovery 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

34. 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 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 research 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

35. 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 reviewer 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.

36. 36Table of Contentswww.Inspire.com 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 positive 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,

37. 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.

38. 38Table of Contentswww.Inspire.com 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?

39. 39Table of Contentswww.Inspire.com 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.

40. 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.

41. 41Table of Contentswww.Inspire.com Acrylic explosion New beginning -acrylic Acrylic compilation Watercolor and ink

42. 42Table of Contentswww.Inspire.com ABOUT INSPIRE Inspire (www.Inspire.com) is the trusted place for patient engagement. Our online community of more than 500,000 patients and caregivers, organized by medical condition, helps industry connect with patients in order to accelerate and improve research. Find out more at www.corp.inspire.com, or by contacting us at team@inspire.com. Follow Inspire: © 2015 Inspire. All rights reserved. Google+ Pinterest Tumblr Facebook Twitter

Experts by Experience 2015: A compilation of patients’ stories

Experts by Experience 2015: A compilation of patients’ stories

Experts by Experience 2015: A compilation of patients’ stories

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Experts by Experience 2015: A compilation of patients’ stories