A Breast Cancer Survivor Tells Her Story of Healing Through Faith and Good Care

One increasingly important realization by healthcare professionals is the need to both engage and encourage patients to participate in their care. The following story of recovery and healing from double mastectomy surgery is told by Ev, a grandmother of nine, mother of three and wife to husband Will of 44 years. I asked Ev and Will to share their story because, I was fortunate to be included in Will’s weekly updates during and after Ev’s surgery. Each message not only gave reassurance to family members near and far that she was doing well, but ended with an inspirational blessing for all; the family’s faith first and foremost in Ev’s healing process. Their faith was a silent but strong part of the care team, and their strength as a couple was a beautiful testament of what teamwork and love can do for a marriage and the trials that life presents.

I include Ev’s words unedited, as she hopes they will help another breast cancer patient facing a similar surgery–to find answers to questions, insight to questions they may not know they have, and to find the same peace be it through faith, a loving caregiver or a skilled care team. Ev had all three–the trifecta of healing for her, and as a result, many, many happy people including her nine happy grandchildren, Ev’s daughters, and her partner in life, Will.

What do I do now? I was growing quiet impatient with follow-up doctor visits regarding questionable mammograms, ultra sound screenings, MRIs and biopsies during the 4 years since I was first diagnosed and treated for breast cancer. My husband, Will, and I were also seeing physical changes (dimpling and caving in of the skin) which was now occurring in the breast where lymphedema was prominent and seemed impossible to alleviate. I had gone to physical therapy and done exercises at home for two years. It didn’t work. The lymphatic system in the breast barely worked. The left breast tissue was ruined by radiation and very angry. My practical problem was regarding bras—being size E and weighing 148, I could barely tolerate wearing any bra I tried.

Dr. Moline, my original breast surgeon, said she could do nothing to fix the angry tissue except a mastectomy. She explained that it would be completely paid for by my existing insurance “to make the situation right” after cancer had struck. This was a big factor in my deciding whether or not to have a mastectomy. My oncologist advised me to have a double mastectomy to alleviate further testing of both breasts– “Nothing there, nothing to test.”

Dr. Moline gave me the names of three plastic surgeons. I choose the first and only one I visited. Dr. Williams was very clear, gave us several options, and sold my husband and me on the benefits of a double mastectomy with Tram Flap reconstruction of both breasts; this would all be done in one day during 10 hours of surgery. Dr. Moline would do the double mastectomy and Dr. Williams would do the Tram Flap with the help of her team.

Will was in total agreement. He was positive and started plotting what I might need for this huge surgery. We purchased a leather electric recliner not only for sitting but for sleeping the first week home. The electric mechanism was very helpful. Will purchased a hand-held shower hose with nozzle to fit in our shower and found a folding chair I could sit on for the first showers.

Our faith is very important to both of us so we relied on the Promises of God to make decisions, to live each day and not worry or loose the feeling of peace. Our family, neighbors, and church friends prayed, brought food, sent cards and flowers, (even new PJs), called and visited. Their sense was not of dismay or, “What are you doing?” Attitudes were positive and they seemed to believe and say, “You’ll get through this!” Three pastors visited us and read Psalms and assured us God was with us.

The day of surgery was a breeze for me. A hospital chaplain said a prayer for us before I went to surgery. Will was sent home and the hospital nurses and doctors called him every 2 hours with good updates. Our house is only 10 minutes away from the hospital so he was close. I remember seeing him about 8:30 pm. I was certain no surgery had been performed on me because I felt no pain or nausea. All I really felt was quite a bit of stiffness. I was checked every hour to make sure the blood vessels that had been moved were successfully reconnected and working to nourish the tissue that had been moved from my belly area to the breast area. I had nine drains. I was down to five drains when I left the hospital 5 days later. I lived on ice chips the first couple days, moved on to clear liquids, and ate a salad later on. I was able to get up and sit in a chair the third day. I remember moving myself that very short distance by myself; Will remembers it differently (he assisted). The nurse helped my attitude about getting up by saying, “The first time is the hardest, and after that it gets easier every time.” She was right. It did get easier. I walked slowly into the hospital bathroom and had a shower on day four. The nursing staff and doctors could not have been more professional. I tried to follow all the rules. I was a little bent forward for a couple days.

At home, Will removed all the smaller rugs on hardwood floors from the recliner to the bathroom. He had learned at the hospital from the nurses, how to empty, measure, and clean the drains. I had completely cleared my schedule and did nothing but rest, eat a bit, and sleep. Will was a remarkable nurse once again. He was willing and able to help me and brought his sense of “get it done” with a cheerful attitude. I was unable to keep track of my meds: Oxycodone for a few days, Ibuprofen 600 MG, and Acetaminophen, so Will took care of dosages and times. That was so helpful. Our closest friends and our family were updated daily with a quick sentence or two by email of my progress. Will was able to keep them informed and they appreciated a quick update. All the drains were removed by the end of the second week after surgery. The metal lanyard that held the drain bulbs against my belly was one of my only irritations. Metal is pretty hard. Do they make a plastic one?

I’m back doing most things except lifting much. I can’t lift my grandchildren but I can hold my 3 month old granddaughter. I can reach most things in my kitchen but found weeding last week a bit of a challenge. I have started taking my walks in the park where it is flat.    

I am so delighted I had this big surgery. The chance for breast cancer is gone. A reduction in my breast size is also a huge blessing.  A caring support group and husband not afraid to help with the recovery process make it all that much easier. I know for sure a top team of doctors can do successful surgery and make you comfortable, but God is the One who heals.


Patient Advocate and Telluride Faculty Dan Ford Describes TE: CO Class of 2016

Sunlight_over_mtnsOver the last five days in Telluride, I have gotten to know an awesome group of 26 medical and nursing students. You clearly will play key roles in changing patient safety in constructive ways. As Dr John Toussaint (ThedaCare Center for HealthCare Value, Appleton, WI) suggests: “How can we provide high quality care unless we provide a base of safe care.”

Various descriptors come to mind. Compassionate. Caring. Thoughtful. Very smart. Respectful. Self-reflective. Genuine listeners. Open to learning and sharing new ideas. Passionate. Willing to live your values in speaking up, decision making and problem solving. Mindful. Inclusive. Thirsting to know more about patient safety….and you did.

You became good friends, bonding, getting to know and care about each other as human beings without labels or titles or tribes. It is clear you are patient and team focused and became even more so during our indoor and outdoor classroom work, social times and the big hike.

Telluride and the mountains are beautiful. Y’all have an inner beauty that will continue to serve you very well in all you do.

I didn’t want our time together to end, especially when several commented that this experience has been life-changing. I am desirious of staying in touch as you take your individual learnings and feelings forward and to helping you in any way I can.

I continue to encourage you to always live and to role model your True North. You will be seriously tested.

I wish each of you many blessings! I am honored to call you friends….


Resident Physicians Share Their Stories at Telluride Experience 2016

Ah_Haa_School_Trees_on_CreekFollowing are leads from Resident Physician reflections after attending the first 2016 session of the Telluride Experience. Links are included back to the original posting on the Telluride Experience blog. Thanks to all who so courageously offered their stories from the front lines of care so that others can learn through them. It is by sharing our stories that we free another to tell theirs as well.

The Magic In Transparency

This phrase struck me as the perfect way to describe an experience I had my intern year. My first continuity ob patient had a fetal demise at 34 weeks.  She was the first patient I had followed from the beginning of her pregnancy.  I performed her dating ultrasound at 9 weeks.  Unlike many of my patients, she and her husband faithfully came to every prenatal visit.  She did not smoke, use drugs and followed the dietary guidelines.  Her husband was the chatter one of the duo, while she would calmly take everything in at our visits.  They both teared up when I told them they were having a girl at the 20 week ultrasound.  They told me her name was Emma. More…

Important Conversations

I was not going to share this but have been inspired by the courage of others around me. So thank you!

…In the first few days of Residency, we had a mandatory “Emotional Harm” meeting. I thought it was nice of them to do and always a good reminder. It focused on the empathy towards the patient and not losing our empathy when getting in the rhythm of dealing with similar situations and cases over and over again. I loved that they did this. This is something that is so important to remember and necessary to address.

Looking back however, I just wonder what about my emotional harm? Where are my resources? In this first 7 months of my residency experience two Senior Attendings committed suicide. I did not know the first, but I certainly knew the second. While there was heartfelt sadness and memorials to honor both, there was nothing else. No counseling offered to employees, no conversations, no checking in after some days, nothing at all. More…

Humility and Humanity

Humility and Humanity. This phrase stuck with me from Dan Ford’s talk. From medical school through residency it is drilled into us to be confident, un-phased, unemotional , these qualities are attributed to professionalism and success. Doctors are supposed to be infallible , so when we face an adverse outcome thats what we do instinctively. We become distant, listening to Helen, Sorrel and Dan thats the exact opposite of what patients need. Alienation only leads to prolongation of suffering for the patients family as well as the caregiver. Moving forward I hope to make these values a foundation of my practice.

Reading all the stories from my peers encouraged me to share as well, this was an amazing group of people and faculty. My first ICU night rotation as a PGY-2 I admitted a patient  in DKA and septic shock. More…


12 Years and 1400 Patient Safety Leaders Later…

Sunlight_over_mtnsTwelve years…that is how long it has been since we first traveled to Telluride, CO to kick-off our inaugural Patient Safety Educational Roundtable and Summer Camp. As we headed west again this weekend to meet with the 36 graduate resident physicians and future health care leaders who were selected from a large group of applicants, it is hard not to think back about all that has happened in those twelve years and the many who have contributed to make it happen.

Twelve years ago, those who came to Telluride believing in our Educate the Young mission consisted of patient safety leaders Tim McDonald, Anne Gunderson, Kelly Smith, Deb Klamen, Julie Johnson, Paul Barash, Gwen Sherwood, Bob Galbraith, Ingrid Philibert, and Shelly Dierking to name just a few. However, the smartest thing we ever did was invite patient advocates to the Patient Safety Educational Roundtable. People like Helen Haskell, Carole Hemmelgarn, Patty and David Skolnik, and Rosemary Gibson were active partners in our work from that first year and made our discussions more productive and our outcomes better.

Over the years, many new faculty joined us in our Educate the Young journey. Some of these additional patient safety faculty included Lucian Leape, Richard Corder, John Nance, Paul Levy, David Classen, Kathy Pischke-Winn, Joan Lowery, Roger Leonard, and Tracy Granzyk. We were also fortunate to have international safety leaders join our faculty, including Kim Oates and Cliff Hughes from Australia, who became regular attendees and popular “mentors” to the future healthcare leaders even though they had to travel almost 10,000 miles to join us each year.

Through all these years, two things remained constant – our commitment to Educating the Young and our partnership with patients. Helen, Carole, Patty, David, and Rosemary continue to be active participants each year but additional patient advocates have joined us including national advocacy leaders Dan Ford and Lisa Freeman.

Through the vision and support of Carolyn Clancy and the AHRQ, what began as a small educational immersion for twenty health science students has now exploded. We continue to grow because of the generous support of The Doctor’s Company Foundation (who provides full scholarships to close to 100 medical and nursing students each year), the Committee of Interns and Residents, COPIC and MedStar Health. This year, over 700 residents, medical students and nursing students will go though one of the Telluride Experience Patient Safety Summer Camps. Out Telluride Scholars Alumni network continues to grow – our future health care leaders staying connected through the years, sharing quality and safety project successes and learning from each other.  And, for the first time, the Telluride Experience went International this past spring as we ran patient safety camps in Doha, Qatar and Sydney, Australia.

Thanks go out to the many passionate and committed faculty and others who have given so much to make our Educate the Young journey so very special. It has been an amazing twelve-year run…


A Year of Hope for One Patient Advocate

The following is written by Guest Author and Patient Advocate, Carole Hemmelgarn

In the months of March and April I had the opportunity to take two amazing trips; one to Doha, Qatar and the other Sydney, Australia. Do I feel fortunate to have visited these incredible places? Absolutely! The irony is, however, I would not have been in either location if my daughter Alyssa’s life had followed its natural course.

I was invited to both places to be part of the faculty to teach patient safety and behavior change to the young emerging scholars in the fields of nursing, pharmacy, medicine and allied health. While these young individuals are regarded as our future patient safety leaders they represent something much more to me. They give me hope. Hope that we can start fixing a broken healthcare system by breaking down the hierarchy, improving processes and communication skills, creating resiliency, and learning to provide support and care to our very own healthcare providers. They are also the generation giving hope to patients and families; making sure we are at the center of care, and that our voices and stories are heard, listened to, and acted upon with dignity and respect.

Earlier this year I told my sister that 2016 was the ‘year of hope’ for me. People will tell me they want me to be happy, but I struggle to understand what happiness is or means. Hope, however, is something I can wrap my arms around. I can hope to see a beautiful sunrise while out running, to watch a smile spread across my son’s face, and to see a child exiting a hospital knowing they are leaving better than when they entered.

There is an incredible aftermath when you lose a child to medical errors. It is a topic rarely discussed and one no one can ever prepare you for. Grief is a journey; a journey without a beginning, middle or end. While those of us who have lost a loved one never want you to experience this overwhelming pain we would like you to understand why happiness may take time in returning, or hope may be the best we can ever do.

When I teach these young scholars, I share part of Alyssa’s story because it helps connect the head and heart, and we need to put this piece back into medicine and caring for patients. Every time I speak about Alyssa, I give a piece of myself and my hope is that you take this piece and use it to make change. The future of patient safety resides in hope because hope is not found looking down or back, it is only found looking up.

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Telluride Experience: Sydney Alum Anna Elias Continues to Dream Big

HarborBrushEach of our Telluride Scholars adds their own voice and passion to the patient safety movement that continues to need attention. The following are most likely words of unintentional inspiration from Anna Elias who shows what one individual can accomplish when they care deeply about a cause, and dare to dream they can make a difference. Anna is absolutely right — Watch this space! — her space, because she is on her way to great things!

You can also link to the Telluride Blog where Anna originally posted this piece.

Watch This Space

I think big and dream bigger but have been told many times in my life to stop doing so. My grade 10 careers advisor told me to aim lower when I expressed an interest in studying medicine, a male physician once told me that training a woman was like training half a doctor and I’ve even had a family member tell me that women joining the workforce are responsible for the downfall of modern society. Despite this, I’m now in medical school and will one day soon achieve my dream of becoming a doctor.

Over the last few days I’ve been given the skills and knowledge to undertake projects that improve outcomes for all patients; I’ve been empowered to make a change. Unfortunately these things take time, you need to carefully plan, analyse, monitor and assess. You need a specific problem to tailor your specific, well researched solutions and I am sure in the months and years to come I will use the things I’ve learned and the frameworks provided to make change happen. However, at this point in time, my goal is big and broad, it’s in no way specific and while I’m prepared to to do my due diligence and execute some high quality, quality improvement projects once I find my focus, right now I just need to do something. Improvements to patient safety education shouldn’t have to wait for me to specifically define the problem in a measurable way or wait to get ethics approval. It can’t wait, not while I know there are things I can be doing that will have some impact right now.

Don’t get me wrong, I know we need to improve patient safety, safely by following the right processes and procedures but today I am going rouge, I am not going to wait. Like a hungry Roundtable delegate on the hunt for a burrito I am going to take action. Tonight I will email my contacts and state my case to ensure that patient safety is on the agenda of every student-run educational conference in my state this year. Additionally, I will push to have a safety moment at the beginning of each event my medical society hosts. Lastly, because I can’t be everywhere at once, I will make a time to train others in my medical society so they too can be safety coaches and start getting the word out about this important issue.

One day soon (when step 1 is behind me), I will start the research and do it the right way but I won’t sit ideally by in the mean time. Watch this space.


Voices from The Telluride Experience: Sydney

As in Doha, SolidLine Media was along to capture the stories being told at The Telluride Experience: Sydney! Thanks to Greg, Michael, John, Ali and team for pulling this short video together utilizing movie magic across the continents in time for the Minister of Health herself to view it live in Sydney, at the Clinical Excellence Commission’s reception for students and faculty before we returned home last week.

Truly a great team effort by all to bring the reflections and voices of change to life.