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Pancreatic Cancer:
The Wish at the End of the Journey

Ihechi Maglin Aguwa
Sandra Millon Underwood RN, PhD, FAAN
University of Wisconsin Milwaukee, College of Nursing

 


 

Facts about Pancreatic Cancer

 

The American Cancer Society[1] estimates that 31,860 Americans (15,740 men and 16,120 women) will be diagnosed with cancer of the pancreas during 2004An estimated 31,270 Americans (15,440 men and 15,830 women) will die of pancreatic cancer in 2004, making this type of cancer the fourth leading cause of cancer death overall. Only about 24% of patients with cancer of the exocrine pancreas survive one year after the diagnosis, and only about 4% survive for five years. Even when the disease has not spread to other organs at the time of diagnosis, the 5-year relative survival rate is only 17%.  It is encouraging to note that over the past 15 to 25 years, rates of cancer of the pancreas have declined slowly in both men and women.

 

The Lived Experience

 

The thought of cancer has always been frightening to me, but the total impact was realized when my father-in- law, whom I will call John, was diagnosed with pancreatic cancer at the age of 76.  John had been under medical care for diabetes since the age of 64.  At 72, he developed diabetic retinopathy. For the most part, he did not do well with exercise and diet, but medications helped control his blood sugar.

Health History

Until December 2003, John had been quite healthy and vibrant with minimal complaints. Then he came to live with my husband and myself, and two of our children, he had a persistent cough that would not go away. He sought medical care, but eventually the cough was attributed to be a side effect of his medication. Three months later, the sclera of his eyes turned yellow.  At the emergency room, the medical team could not identify the cause of his jaundice. His liver enzymes were abnormally elevated indicating some liver damage. After a series of tests and a week’s admission, the medical team discharged him after stopping all his oral medications. They concluded that his two oral diabetic medications, Glipizide and Metformin, had caused his liver damage. He then began taking insulin injections.

Two weeks later, with no signs of his jaundice clearing, he started vomiting and was not able to keep anything down. Still, the medical team could not identify the cause. He went from one liver specialist to another, and they all linked his condition to the diabetic drugs. He started losing weight, his appetite was poor, his blood sugar fluctuated, and his demeanor gradually began to change to one of hopelessness.

His symptoms persisted and worsened. Weeks later he was again rushed to the emergency room with complaints of chest pain that radiated to his shoulders and arms. Myocardial infarction was ruled out. Nevertheless, the medical team decided to keep him in the hospital to study his case. For three weeks, he was evaluated for parasitic infections since he had traveled to Africa six months earlier. A series of tests were performed, indicating a tumor in his esophagus, possibly blocking his bile duct and causing the jaundice. Surgery was performed to drain his bile, and the jaundice was relieved.

Then, six weeks later, a surgeon studying the CT scan noted a tumor in John’s pancreas. The doctors seemed to become fanatic about his case. Surgery was performed and metastatic pancreatic cancer was revealed. Due to the extent of the tumors, the surgery was extensive, yet palliative. The goal of the surgery was to relieve the symptoms, keep the bile duct open, and prevent blockage of the intestines.

Living with Cancer

After dealing with ill health and no diagnosis for nearly three months, John now had to face a very bad diagnosis.  The physicians did a good job in preparing him before telling him that he had two to three months to live.  He was then discharged to hospice.

This was a very difficult time for John’s family, and my husband, who had been in charge of his father’s health since this all started. The hardest part, for family members, was the switch from medical care to palliative care. It was very disheartening to learn that “nothing” was going to be done for John, implying that he was going to die. I could not understand any of it. I yearned for some surgeon to give us some ray of hope, to say at the least, “Maybe, let’s try this treatment.” But none came.

John was aware of his fate as we all were. It was very hard to live that way, and nobody was prepared to deal with it. John desperately needed something to hold on to, and still wondered if it made sense. He was in much pain from both the surgery and the cancer. It became apparent that the cancer was spreading to other organs.

At home John was placed on tube feedings and insulin injections. On some days, he would refuse his medications and food. His sense of humor was masked by pain and feelings of despair.

Yet, he held on with hospice care, and we were grateful for the care he received. Nothing was too much trouble for these dedicated and compassionate people. Every aspect of the care and the support for our family was outstanding. Gradually, everybody started accepting the situation and trying hard to face each day with its new challenges. Now it was time for comfort care, morphine as needed, favorite movies, "tell-all" stories from childhood, favorite foods if he could tolerate them, and just anything to make him comfortable and happy.

Still it was difficult.  Some days, he would refuse to have his blood sugar checked and would say, “Will it get better?” Other days he would refuse his tube feeding. 

John eventually requested to go home to die in his native country, Africa. He left the United States in July 2004 to spend the rest of his days with his wife and the rest of his extended family. He was glad to be at home, and also glad to have an opportunity to prepare himself and his loved ones for his coming fate.

A Nurse’s Perspective

Being a nursing student while John was going through his symptoms and cancer diagnosis, I had the opportunity to be part of it all. I remember when he was initially diagnosed with liver damage due to drug interactions, I wrote a paper about the drugs: Glipizide and Metformin, in a pharmacology class pointing out the bad effects of those drugs. Now I know that those drugs had nothing to do with John’s symptoms. 

I then had opportunity of following him through with the procedures he was going through. During one admission a nurse came to tell John the he would be undergoing an “ERCP”. When the nurse mentioned “endoscopic retrograde cholangiopancreatography,” John was scared out of his wits and ready to refuse it. I was glad to be there to explain the procedure to John. I was glad I was able to help John in any way I could while he was in the hospital.

Once he was transferred to hospice and discharged home, I utilized my clinical experience and the skills I learned in school to take charge of giving him his medications, administering tube feedings, and checking his blood sugar. I learned a lot from John’s experience with the surgeons and physicians that took care of him.  And now I know how important it is to get a second opinion in matters of health.

Sometimes, I wonder if it would have made a difference if the surgeons had found John’s cancer when he first presented with symptoms. But then, knowing about pancreatic cancer and its poor prognosis, maybe it may not have made a difference.

For the most part, the nurses that took care of him did a wonderful job. I am ever grateful for the help hospice offered to John and his family. It opened the way for us to really talk about John’s diagnosis and move on to plan with him on how to live the rest of his life. I never expected that John could get to the point of accepting that he could live with pancreatic cancer and make the best of his remaining days, but he did.

The Day

Early one morning in November, my three-year-old daughter Kris woke me up crying that she did not want her grandpa to go away. She said she just saw her grandpa in her dream smiling to her and waving “bye, bye.”  I never knew she knew what dreams meant or even had them. My mind still raced at that dream of hers, and all my thoughts were of John and his deteriorating health.

Two hours later, a call came from home breaking the news of John’s death to us. I had thought we were prepared for that, but it was devastating. Could one ever be prepared for the news of a loved one’s death? But most of all, we were glad for the opportunity we all had with him, and especially that he was able to be where he wanted to be, to prepare for his journey to the great beyond. Kris remembers John and often wonders how long her grandpa is going to be in heaven and wants to know what exactly “forever” means.


[1] American Cancer Society. (2004). Cancer Facts and Figures, 2004. Atlanta, GA: American Cancer Society. Retrieved on October 10, 2004 at http://www.cancer.org

 

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