Possible Miracle A Caregiver's Experience Coping with Her Husband's Struggle Through Pancreatic Cancer, Liver Disease and a Liver Transplant

Possible Miracle

A Caregiver’s Experience Coping with Her Husband’s Struggle Through Pancreatic Cancer, Liver Disease and a Liver Transplant

By Susan Fayne

With Foreword by Charles Miller, MD

Director, Liver Transplantation

Cleveland Clinic

Possible Miracle: A Caregiver’s Experience Coping with Her Husband’s Struggle Through Pancreatic Cancer, Liver Disease and a Liver Transplant

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Library of Congress Cataloging-in-Publication Data

Fayne, Susan.

Possible miracle : a caregiver’s experience coping with her husband’s struggle through

pancreatic cancer, liver disease and a liver transplant / by Susan Fayne.

pages cm

ISBN 978-1-62023-115-9 (alk. paper) -- ISBN 1-62023-115-8 (alk. paper) 1. Fayne, Susan. 2. Women caregivers--United States--Biography. 3. Pancreas--Cancer--Patients--Biography. 4. Pancreas--Cancer--Patients--Family relationships--United States. 5. Alpha-1 antitrypsin deficiency--Patients--United States--Biography. 6. Fayne, Michael--Health. I. Title.

RC280.P25F39 2015

616.99’4370092--dc23

[B]

2015029362

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A miracle cannot prove what is impossible;

it is only useful to confirm what is possible.

— Maimonides

All Proceeds Will Benefit The Transplant House of Cleveland

Cleveland Clinic is a leader in a variety of transplantation procedures. Their comprehensive life-transforming program has expert physicians and specialists who save thousands of lives every year. Organ transplant is like no other surgery. It affects a family physically, emotionally and financially. Physically, because a patient must be in danger of losing his or her life before they are considered to be placed on a transplant list or be eligible for the surgery. Emotionally, because another person must become a living donor or lose their life for the patient waiting for transplant to survive. Financially, because of the amount of time patient and caregiver need to spend away from their home and job. Above all, the transplant can’t be planned for, as the patient never knows exactly when the surgery will take place.

Michael and I were fortunate enough to be able to stay in a hotel for the four months we were in Cleveland before and after his transplant surgery. Many others do not have that ability for various reasons such as family responsibilities, cost, or career related issues. It is so very hard to be away from home, loved ones and friends at a time when you need all of them the most. We both felt how challenging it is to be ill and in a strange city for a long period of time, even though our family was close enough to visit us regularly, so I can’t imagine the anxiety and loneliness felt by patients and their caregivers when they must stay close to Cleveland Clinic and are not near anyone or anything familiar.

The Transplant House of Cleveland has been created to help families who have a loved one being evaluated for transplant, waiting for transplant, or recovering from transplant by providing temporary, affordable housing in a home-like environment while in Cleveland for medical care. The newly opened facility provides quality housing in a warm friendly atmosphere at an affordable price. Being with a caring staff, as well as other patients and caregivers supplies great support for those in need. I hope my story will cause readers to recognize the agonizing months transplant patients and their families go through and realize how important it is to aid and assist others who are experiencing the transplant process by offering them the Transplant House as a safe home away from home.

This book is a gift to Cleveland Clinic with all proceeds going to the Transplant House of Cleveland.

Please send all donations to: Transplant House of Cleveland

2007 E. 115th St. #1 Cleveland, OH 44106

www.transplanthouseofcleveland.org

In memory of our dearest Michael Roth

His kindness has touched a countless number of people and will continue to do so even though he is no longer among us. Without his help and encouragement my husband, Michael, would not be here today. Our undeniable gratitude is entrenched in the remembrance of this very special, altruistic man who has given so much to so many.

A Letter to My husband

To my beloved husband, Michael,

Much of the past year and more has been obscure to you. My desire is that this narrative will make you conscious of the many who worked so hard to save your life and inform you of the events that led them to do so. May we always treasure what they have done for you and the time they have given us.

With love,

Susan

A Letter To The Reader

My husband, Michael, is a survivor of a savage disease: pancreatic cancer. He has also recovered from a relentless genetic condition, alpha-1 antitripsin deficiency, which severely attacked his liver. He eventually needed a transplant, which he too survived. Together we persevered and lived through those horrendous ordeals; he as a patient and I as a caregiver.

Through each medical condition I lived in a state of denial. Eventually I realized that I had a very sick husband, so I began hoping and praying for him to have a miraculous recovery. Finally I recognized that if I didn’t intercede on his behalf and do it quickly, I could lose the man I love. Assuming control and being his advocate saved his life twice. My belief is that my experience will inspire other caregivers to take charge of their own situations and prepare for future problems they may encounter. I have hope that they too can face life’s adversities with great fortitude and courage. The most important weapon in a caregiver’s arsenal is that of being proactive.

It is also important for the reader to know that the events that happened in our life, in regards to my husband’s medical conditions, pertain to his case only. Individuals have different experiences when dealing with cancer, liver disease and especially transplantation. What we went through applies to Michael’s particular issues and may not happen similarly in every patient.

If you have chosen to read our book, I trust our path from sickness to health will encourage you.

Acknowledgements

One of the greatest pleasures I have in writing our story is to be able to acknowledge those who have taken part in my husband Michael’s care throughout his serious illnesses. I could never properly thank all of them or the institutions that have contributed. It is my desire to show our gratitude by writing this memoir.

Along with Michael Roth, I also dedicate my book to our wonderful children, Amy, Adam and Darren, who are all so uniquely different that they were able to help us in very contrasting ways. Love begins at home and I know if it were not for the tireless devotion they showed their dad he would not be here today. And to Nikki and Tony, we can only hope that their prayers were with their father when he needed them the most.

We are so very devoted to Mayo Clinic. Without question, extraordinary medical attention was always paid to Michael when it was essential. If not for their remarkable diagnosis of alpha-1 antitripsin deficiency and their excellent conscientiousness in the treatment of Michael’s liver disease, the deadly pancreatic cancer that invaded his body would not have been found in a timely fashion. Their team of impressive specialists worked quickly and thoroughly to make sure the aggressive cancer that attacked my husband was eradicated. We are so very appreciative to Mayo Clinic, and to their amazing group of physicians who performed the surgery and prescribed the necessary protocol that was administered to prevent the return of the dreadful disease and ultimately save Michael’s life.

We are immeasurably appreciative to Sarasota Memorial Hospital and their multitude of wonderful physicians and custodians. From their very efficient emergency room to their hospital wards; whenever needed, they took care of my husband in his darkest hours.

Michael and I are so very grateful to our donor and his family. It is difficult to express in words the feelings we have except to say that the gift of life they have given so unselfishly will always be cherished and held dear to us. We will forever pray for our donor and those he has left behind.

Last and most importantly, our deepest appreciation goes to Cleveland Clinic, whose humanitarianism and concern for the welfare and happiness of those who cross their threshold is essential in all facets of their health care programs. Was it timing, chance or luck that their team of professionals decided to accept Michael for a liver transplant? I don’t think it was any of those elements. He is here today because of the judgment, compassion and wisdom of the many fine people on their staff who viewed him as an individual, not a number or statistic. My narrative is a tribute to the generosity of that great institution whose doctors and cast of participants gave my husband a chance at life when over 20 other hospitals would not accept him. We are indebted to the host of physicians whose technical expertise saved his life, to the many nurses and caregivers whose unwavering ministrations helped his recovery, to the experienced and proficient transplant staff who were and will always be there for us. The diligence and attentiveness that Cleveland Clinic’s transplant program shows their patients is astounding. How can we ever thank them enough for saving Michael’s life?

Our story of love, hope and survival is written for all of the above.

Time is too slow for those who wait,

Too swift for those who fear,

Too long for those who grieve,

Too short for those who rejoice,

But for those who love, time is eternity.

Henry van Dyke

(1852-1933)

Foreword: Second Chances

Everyone deserves a second chance. Second chances come about in many different ways and are always a precious gift. It could be a second chance at a career, a second chance to be a parent, a second chance for love or even a second chance at life. In medicine, second chances at life are really the most precious gift. Of course, we’d like to be able to say that it’s within our power to give everyone a second chance. The sad fact of the matter, however, is that circumstances can oftentimes be cruel.

The first screening a potential transplant patient gets at a program is when the intake team screens a candidate’s records. Unfortunately, at many centers there are trigger issues that exclude a candidate from further consideration and they are promptly rejected prior to any formal face-to-face evaluation. Michael Fayne had one of those trigger issues; he was a survivor of pancreatic cancer. His life’s journey had taken him down a devastating path to where he and his family had just about exhausted all options and hope. But incredibly, they held on and continued to search for answers.

At Cleveland Clinic we recognize that each person’s story and situation are unique and strive to minimize screening rejections. It is far better (but more labor intensive) to get the granular details of a patient’s history and condition and make a deliberative and well-informed decision after a formal full evaluation at a multi-disciplinary candidate selection committee. These are rigorous and tough meetings; people’s lives are on the line. Who gets the second chance? We have rules we have to go by, but it’s never black and white. That’s when we dig even deeper, get the real details and synthesize all the data into a probabilistic prediction of short and long-term success; looking to assure that with fairness and realism, we help patients and their families experience a second chance at life’s journey together.

I believe that is what Susan and Michael experienced at Cleveland Clinic. They have asked me repeatedly why we saw things differently than over 20 other centers and gave him a chance. While I explained the process outlined above, we are also guided by an ethos of trying to err on the side of life and give people a second chance at life. That is the ethos that makes our team get up each day and be excited to go to work and what makes many of our patients friends for life. Three years later, I know I have two new great friends in Susan and Michael!

Charles Miller, MD

Director, Liver Transplantation

Cleveland Clinic

September 2012

Prologue

I hought he had been dozing when Michael looked up at me from his hospital bed, asking in the weakest of childlike voices, Am I going to die? My heart was breaking as I held his face in my hands and lied, No, no, no, you are going to be fine. When he finally drifted off to sleep my emotions could no longer be hidden while memories of the past came flooding back. My entire being ached for the man who had been the love of my life and the pillar of our family for more than 30 years. Thoughts of losing him crept into my mind along with images of living my life alone. It angered and terrified me all at the same time, but mostly it saddened me. I stared through a blur of tears at my husband’s gaunt face and frail body picturing him as he had once been; so handsome and so strong both physically and mentally. Feeling pure anguish, I grieved for the happiness we once had shared together as I allowed myself to wallow in self-pity.

What was wrong with me? How could I not fight for Michael? He was deteriorating before my eyes while I looked on, helplessly hoping. Was I really that incapable? Was I really going to just let him die? My thinking was slowly evolving into soul-searching. It was at that moment I realized that living in the safe state of denial that had been my existence from the time my husband became ill was no longer a choice. I needed to be more than a good caregiver; I needed to be his advocate. I needed to find that tenacious, brave girl that lived inside of me. I needed to do whatever it took to save his life. Now more than ever I had to keep my faith and find hope. I prayed to God for the courage and strength I would surely require for what I was about to undertake. As I contemplated my insurmountable mission, determination surged through me in spite of the great trepidation and fear I was feeling. Even though I didn’t know where to start, I knew in my heart there had to be someone, somewhere who could help Michael. Thus began my search for a possible miracle.

But the questions remained: How? Where? Who?

1943

Chapter 1: A Child Star

I wasn’t part of Michael’s life when a dire genetic condition began working its evil on his tiny body. He was just a newborn when he first exhibited signs of an abnormality due to an unknown liver disease. The jaundice was unexplainable, as were the numerous other symptoms. When there wasn’t a clear answer as to how the affliction was to be treated, his mother, upon the advice of his pediatricians, took her baby boy to see a well-known pediatric liver specialist in Boston.

World War II was still raging when Michael’s mother made the arduous journey from Detroit to Boston by herself, on a train crowded with soldiers. She loved telling the story of how she held her infant for hours in her arms during the long ride. Once there, she stayed with distant relatives while her son was admitted to Boston Children’s Hospital.

The pediatric gastroenterologist, likewise, did not understand why the otherwise healthy baby was showing signs of early liver disease. What the doctor did know was that Michael was in danger of losing his life. How absolutely terrifying this must have been for his mother when it was decided that exploratory surgery was the only course of action to try and save him. They operated on the infant’s liver, not knowing whether he would live or die.

Michael never found out exactly what the surgery entailed and there was never a diagnosis as to the cause of his illness. Nevertheless, the procedure was a complete success, for he grew into a normal young man. The only reminder of his time in Boston was a significant scar he retained on his abdomen. No one understood until years later that the surgery was experimental, and therefore written about in the medical journals in 1943. I didn’t know I married a child star.

See hospital records on page 218 to view Michael’s surgical and pathology reports from March 1943.

1980 to 2000

Chapter 2: Susan and Michael

At a very young age, Michael and his brother Ronnie were running a successful travel business. At 36 he had been married twice and, with his second wife, had two small children: Tony, 6, and Nikki, 4. He was a capable, controlling and handsome man with a charming, energetic personality that drew people to him. His zest for life was something to be admired. Being a self-made entrepreneur, he had few constraints, was