Wings of Hope for Pancreatic Cancer Research

BILL ZIEGLER

A Survivor’s Story

Maureen Shull & Bill Ziegler

WINGS OF HOPE founder Maureen Shul and Bill Ziegler, pancreatic cancer survivor

I have been asked to tell the story of my experience with pancreatic cancer, 17 years ago, and I am very glad to be here to tell it. I think that I became a survivor because of an incidental blood test which revealed significantly elevated liver enzymes. I was asymptomatic, and the doctor was alarmed by the lab findings. I was seen by a gastroenterologist, Tomas Reed, who did an endoscopy procedure. He said, “You are 75 years old, jaundiced, and you have pancreatic cancer, which is not operable.” He told me to go home, and expect to live for three or four weeks. I had retired a year earlier, my wife had passed on six months earlier, and I had two dogs and a cat. I went home and waited to start to feel bad. I have no memory of the next four days, after which Dr. Reed called to tell me that he had sent my images to John Cameron, at Johns Hopkins, who felt that my cancer was operable, and to call Johns Hopkins for an appointment. I remember having always declared that were I to receive a bad diagnosis, I would “go with the flow”, and do little or nothing. A daughter, Retta, has told me that when it did happen, I became determined to do whatever I could.

I have met a notable lady, Maureen Shul, who, after her mother and brother succumbed to pancreatic cancer, formed a foundation, “Wings of Hope”, in support of pancreatic cancer research. That name reminds me of Emily Dickenson’s wonderful poem, “Hope”, which I found helpful during my cancer ordeal, and since.

John Cameron, then Chief of Surgery at Hopkins, was the world-wide guru of pancreatic cancer surgery, and I felt fortunate to be his patient. During the three weeks of waiting to go to Baltimore, I became quite ill. The most severe symptom was unrelenting, and unrelieved itching of jaundice, with uncontrollable scratching of every square inch of skin. In addition, I became weak and unsteady and required assistance in walking. Retta accompanied me to Baltimore, making it possible for me to get there.

The surgery was scheduled for nine am the morning after I arrived at nine pm. I was afraid that it might be cancelled. I went immediately to ICU where amazing nurses performed a bowel prep, and waited for word from Dr. Cameron, who was arriving from out of town. At two am I was relieved to learn that Dr. Cameron had said that the surgery would proceed. My Retta was told that the surgery, itself, unrelated to the underlying lesion, carried a mortality risk of 50%. She did not tell me that until much later. I had thought that the risk would be the same as for any surgery.

Dr. Cameron’s routine was, with the help of a resident, student and nurses, to open the abdominal cavity and explore the other organs, while four other surgeons, scrubbed, gloved and uniformed, waited along a wall of the room. When they learned that the surgery was to proceed, they surrounded the table and assisted. I don’t know how long the surgery took but I imagine it was a good while. Later, I looked in a surgical textbook to study the procedure known as The Whipple, named for a surgeon, and found that it is so complex that I could understand none of it. I later learned that John Cameron’s policy was that, if the lesion exceeded a diameter of three centimeters, he considered it inoperable, and did not do The Whipple. My lesion measured three and a half centimeters, and he did it anyway. I don’t know why.

After the surgery, for a number of days, a blood sugar level was obtained every four hours to see if I had lost enough Islets of Langerhans to have become diabetic. I had not; more good luck. I was there for three more weeks, enjoying wonderful care. Every single morning, Dr. Cameron would appear in my room at six am, in a tie, a white shirt, and his white jacket, followed in ten minutes by his extensive house staff. On one of those mornings, the very gentle Dr. Cameron said, “I think you should try not to belch so much. It could lead to retching, and we don’t want that.” Wondering how it was possible to control belching, I tried, and apparently succeeded. After about ten days post-op, on the third day of my asking Dr. Cameron if I could have ice chips, he said I could. I was ecstatic. I told the nurses’ aide that Dr. Cameron had said I could have ice chips, and she brought me some right away. I thought that I was in a most “wonderful world.”

A few minutes later, another nurse came in, saw the ice chips, and said, “What are you doing”? I told her that Dr. Cameron said I could have ice chips, and she said, “Well, he has not ordered them”, and took them away. I said, “Could you call Dr. Cameron and get the order?” She said, “I wouldn’t think of calling Dr. Cameron about ice chips.” I was angry, got out of bed, took my IV pole with me, went out by the nurses’ station, bent over, and drank water from a fountain. A nurse saw me, of course, and I was soon back in my room getting a severe tongue-lashing from a resident who had run to my room from downstairs. He told me that I could have destroyed the result of the entire procedure.

One evening, Retta, leaving the hospital about midnight, walking through the darkened, otherwise deserted lobby, came upon a young lady playing a piano. The young lady was the medical student who had been in the operating room throughout my operation. She told Retta that, during the surgery, Dr. Cameron said to his colleagues, “Fellas, I think this one is going to work”. One day, a young physician came by. After Retta commented to him how wonderful she thought it was that all of the cancer had been removed, and no regional node was involved, he said, a trifle smugly, and a bit sardonically, “Well, he does have pancreatic cancer, and can expect to have about two years to live.” I hope that that young man has since learned more about physician/patient communication.

I came home after three weeks, and followed up with my oncologist, Richard Hesky. The protocol was to wait until two months after the surgery to start the chemotherapy and radiation. They were started at the same time; five weeks of radiation, five days per week, and six months of chemo. I had no side effects from either one. After two years, Dr. Hesky told me that my markers had returned to normal, and that since I was asymptomatic, in pancreatic cancer, unlike some other cancers, it meant that I was cured. I have had no further trouble that could be related to my pancreas. I do ingest 21 capsules daily, of pancreatic enzymes, to facilitate the digestion of starches, fats, and protein.

I am delighted to be able to share this story, and hope that it might be found helpful to some.

JIM AND JANET COMERFORD

Grand Junction, Colorado

We received an unexpected introduction to the dire circumstances of pancreatic cancer with Jim’s diagnosis, surgery and treatment in 2010. We are very blessed that Jim is a survivor and is doing well 2 ½ years later. His surgery (Whipple Procedure) at St. Mary’s Medical Center in Grand Junction coupled with chemo-radiation treatment and periodic exams at the CU Cancer Center in Denver have shown us that there is hope in the remarkable, “world class” quality of care that is available right here in Colorado. The goals of Wings of Hope for Pancreatic Cancer Research align perfectly with our personal mission – to raise statewide awareness of pancreatic cancer, especially the importance of early detection and the available treatment options, and to raise funds for the research and treatment programs at the University of Colorado Cancer Center, which is truly on the leading edge in the battle against pancreatic cancer. We are pleased to support Wings of Hope for Pancreatic Cancer Research.

Maureen Shul, Colin Weekes and others

Jim Comerford, Janet Comerford, Isaiah Weekes, Maureen Shul, Paula Sandoval and Dr. Colin Weekes at the University of Colorado Cancer Center

February 13, 2014

Dear Maureen,

I feel very lucky and blessed to have Dr. Colin Weekes as my doctor and Dr. Barish Edil, the surgeon who performed the pancreaticoduodenectomy (whipple) on me in December 2012. I am in the 10% bracket that make it through a year after diagnosis and hope to be in the 6% of the blessed ones who live longer than 5 years, and with the grace of God, I will.

I read about your losses and I want to express my condolences. Only those of us who have walked along those dreadful paths know the darkness that can be encountered when time is not our ally or when other circumstances don't come together in our favor.

Thank God for the CU Cancer Center doctors, staff and wonderful people like you who stand for those affected by cancer.

ARTURO GARCIA

Lakewood, Colorado

butterfly

From The Pueblo Chieftain

Published: November 24, 2013;
Battling pancreatic cancer

I was pleased to learn more about the University of Colorado Cancer Center and University of Colorado Hospital and their work in pancreatic cancer. In fact, it may be leading the national effort in its multi-disciplinary clinic serving more than 200 pancreatic cancer patients and performing more than 100 surgeries since last year.

The many specialties in major health issues at the CU Anschutz Medical Campus don’t always garner publicity across the state, even though many patients from all corners are served by CU physicians.

I was impressed to learn that the CU Center participated in a clinical trial in which a combination therapy was used, the first in 15 years, that showed clinically significant benefits for advanced stage pancreatic cancer.

As this month is National Pancreatic Cancer Awareness month, I hope media sources alert the public about the stellar work going on at CU in health matters that touch so many lives from Alzheimer’s disease to cancer. Word has reached me that the multi-disciplinary approach to treatment has brought patients to Colorado from as far away as Europe.

As universities struggle for funding these days, this is surely an effort worthy of supporting.

Alvin Rivera
Pueblo, Colorado

butterfly

JOIN THE EFFORT…BE A PART OF THE POSSIBLE, BE THE HOPE.