In his own words: living with pancreatic cancer

Ralph is 49 years old and was diagnosed with pancreatic cancer five years ago. He is a retired Deputy Sheriff and lives with his wife in Denver, CO. He spends much of his free time visiting other people with pancreatic cancer to lend his support.

What was your first sign that something was wrong? What symptoms did you experience?

Maybe it was coincidental, but about six months after receiving a blow to my back near my right kidney, I started to experience pain in the upper right quadrant of my abdomen. The pain usually started on a Thursday and worsened on Saturday night. I would get into a hot bath and that would help somewhat. I was amazed that most of the time the pain was on the weekend. Luckily, I missed only 1 or 2 days of work from 1991, when the pain began, until 1998.

What was the diagnosis experience like?

The diagnosis took a long time and was very frustrating. In 1992, I went to an internist, who did every test available. In 1996, he thought my gall bladder was the problem, so he removed it along with my appendix. But I still had the pain, which occurred on and off about once a month. The only relief I found was a shot of Demorol, a strong pain-reliever, which I received about 10 different times at the emergency department over the course of 6 years. My doctor thought the pain was in my head. Then one day I was throwing up and in terrible pain. I went into his office and he came into the exam room and said, "Ralph what can I do for you?” I said, "Doc, I am in terrible pain." He then said," What do you want me to do?” I was so sick and upset that I got my records and never saw that doctor again. As a result I thought maybe the pain was in my head. I endured the pain for about a year without treatment. Looking back on that decision it was probably a mistake.

I finally went to another doctor when the pain was getting worse. In May of 1998, I went to the emergency department and was admitted to the hospital for severe pain and dehydration. They ordered a CAT scan, (although I’d had seven CAT scans previously), which detected a tumor on my pancreas. The next day when the doctor came in to tell me the news, he was as pale as a ghost. He said I probably had six months to live and that I had two options: do nothing and control the pain with medication or undergo surgery, radiation, and chemotherapy to hopefully remove the tumor.

What was your initial and then longer-term reaction to the diagnosis?

After hearing that I may only have six months to live, I couldn’t help but think, “Thank God—at least I won't have to live in this pain.” But then I rallied and got into “fighting mode,” determined to fight the cancer, with the support of my faith, family, and friends.

How is pancreatic cancer treated?

Pancreatic cancer is usually very aggressive and very painful. Sometimes the tumor surrounds the aorta (the main artery bringing blood from the heart to the rest of the body), making it inoperable. In most cases, pain medication is the basis for managing the disease. But in some cases, a surgical procedure called the “Whipple procedure” can be done to attempt to remove all or most of the pancreatic tumor and surrounding tissues.

Four days after learning of my tumor, I underwent the Whipple procedure; a small portion of the tumor surrounding the aorta had to be left in my abdomen. About two weeks later, I began receiving chemotherapy at home through a catheter in my chest for 8 weeks; I returned to the hospital periodically to change the solution. At the same time, I went to the hospital to receive radiation five days a week for a total of 26 sessions. I was sick with nausea and vomiting most of the eight weeks and had severe weight loss, but I made it through the treatments.

Did you have to make any lifestyle or dietary changes in response to pancreatic cancer?

I live a fairly normal life now. I am able to travel a bit—I just returned from Tucson, where I went to see the Colorado Rockies during spring training. I do have slight pain still, but it is manageable. I developed diabetes about three years after my surgery, so I now take insulin. I exercise twice a week, but I don’t severely limit my intake of favorite foods, since my doctor wants me to keep my weight up. I have some trouble digesting certain foods, particularly fatty foods, and I take pancreatic enzymes before meals to help with that. Although I don’t feel they are that effective, so I don’t always take them. Either way, I spend a lot of time in the bathroom…I should call it the library, since I have so much reading material in there!

Did you seek any type of emotional support?

Faith in God and prayers from other people have helped me get through the days…and years. I visit people with pancreatic cancer and most of them don't last six months. Sometimes they feel sorry for themselves. I really want to help them by letting them know what they may expect in terms of their treatment. But most importantly, I want to give them hope that they may be able to surpass six months. And when I volunteer my time to help others, it never ceases to amaze me how mutual the support turns out to be.

Does pancreatic cancer have any impact on your family?

My pancreatic cancer has definitely affected my wife and two children. My wife took on a lot of extra responsibilities when I was in treatment, and even now when I don’t feel well she steps in without reservation. My kids were 18 and 20 when I was first diagnosed. I was especially worried about their well being, emotionally and financially, since they were not on their own yet. But in general, although we’ve cried, we’ve also laughed and been supportive of each other.

What advice would you give to anyone living with pancreatic cancer?

I feel it is critical to have faith in a supreme being and to be at peace with your life and the possibility of death. There is no sense in stressing over anything when you have limited time left. Stress is a killer; laughter is medicine. So, in the time you have left, whether it’s a day or 10 years, spend it with supportive family and friends—as well as strangers—to create some much-needed laughter and hope.

As told to ]]>Diane Voyatzis, RD]]>