Pancreatic cancer has been a gift in many ways. It is my arch nemesis, but has given me so much that I have to acknowledge the positive aspects of its impact on my life.
It has become a bit of a family joke that my birthday, March 16, is a horrible day, because it brings about horrible things…first, it brought me (Irish families have sick senses of humor), and eventually, it brought about my father Jim’s diagnosis of pancreatic cancer, and two years later, his death.
The last day my dad felt normal was a couple days before my birthday in 2010. Several members of my family went out to dinner to celebrate, and he felt fine. The next day, I called to ask a favor of Dad (as you do). He said he would, but wasn’t feeling well, so that weekend wasn’t a good time. The following day, my birthday, I spoke to my mother, and she said he was jaundiced. After joking about it (again, sick sense of humor), I said, “You know what I’m thinking, right?” My mother said, “Yeah, but that’s not it. He’s only 50.”
We were both talking about pancreatic cancer. Our family had been touched by this horrible disease about ten years earlier, with the death of my great-aunt Alice in 2002. I was in college at the time, and had taken a class on cancer, and done a project on pancreatic cancer in honor of my aunt. Because of this experience, my family knew that jaundice was a symptom of pancreatic cancer, and that pancreatic cancer is one of the deadliest forms of cancer with which one can be diagnosed. But, as my mother said, my father was only 50. That couldn’t be it.
My father hadn’t been to a doctor in four years, but he made an appointment after he developed jaundice. His doctor ordered an ultrasound, which had abnormal results: there was a spot on my father’s pancreas, which was very concerning for both the doctor and my family. The next step was a CT scan, which confirmed the ultrasound’s finding. The gastroenterologist who read the ultrasound then immediately referred my father to Massachusetts General Hospital. The GI at MGH scheduled an appointment for my father to have an endoscopy on March 31. At the time, I was working near MGH, so I went to join my parents after work, not expecting that we would be facing horrible news together.
After the procedure, a nurse brought my mother and I back to join my father in recovery. The doctor was waiting for us, and my father was awake, if quite groggy. The doctor sat us down and said he had found the mass on my father’s pancreas, and that it was, indeed, most likely malignant. He had sent the retrieved portions for biopsy, which would confirm his initial diagnosis, as well as if it was metastatic.
We had to wait several days to get the results, and the news was the best case scenario: it was not metastatic, so my father could have the Whipple Procedure, which was the best means through which he would have a chance at long-term survival. The protocol for his type of tumor was that he would have a round of chemotherapy and radiation prior to the surgery, in an effort to reduce the size of the tumor. My father handled this six week round of chemo quite well…he lost weight, but he appeared healthy, he had minimal side effects such as nausea or exhaustion. He had his good days and bad days, but he was able to continue working, attending family functions, school events, etc.
Everything changed again on June 19. This was after the first round of chemotherapy, and my parents went to the doctor to begin getting ready for my dad’s Whipple Procedure. It was at that appointment that they got the results of his most recent scans: the tumor had metastasized to his liver and was no longer operable. From that point on, for nearly two years, my father tried several rounds of chemotherapy, with varying drugs, including entirely new cocktails based on recent research.
The chemotherapy took a huge toll on my father’s body. In a span of less than two years, my 52-year-old father appeared to age decades and experienced several week-long hospitalizations caused by internal bleeding. In January 2011, doctors told my father he had about two weeks to live.
Somehow, though, Dad rallied, and recovered remarkably well from his hospitalization in January. He took advantage of in-home hospice care, with a wonderful hospice nurse, whom my father grew to respect and enjoy. He took time to say what he needed to say to friends and family, appreciated the small daily events in life which were once a nuisance: attending swim meets, driving, buying oil for the car, cuddling in bed, eating good food, going to car shows with my brother, sitting by the pool, going to Maine with my mother.
In March 2012, my father’s condition had worsened. He was on steroids which caused him to become very puffy, he was quite weak, could no longer drive, and easily became exhausted to the point that he had frequent falls. I brought him to have a scan which confirmed that he had had a small stroke, which was impacting his strength. On the way home from that, we went to breakfast at a favorite family diner. When we left the diner, my father didn’t have the strength to step up onto the curb and fell down. Fortunately, he fell so that he was sitting on the curb. I went to help him up, and was shocked to realize that I would have to lift my father into a standing position—I was supporting almost all of his weight to help him get up.
A couple weeks later, the day before my birthday, my dad and I drove my younger siblings to swim practice, he bought my oil for my car, and then I went home, saying I’d stop by the next day. When I did, my sister told me he was asleep, so I didn’t bother him. I went home, having plans to go out with friends that night. While I was out, my sister tried to call me. When she finally got through, she said, “It’s dad. He’s in the hospital, and it doesn’t look good.” I rushed to the hospital.
The next three days were spent at the hospital, sleeping on couches, and finally, in the hospice room with family and close friends, watching the last moments of my father’s life. It was quite literally the hardest thing I have ever had to do. He died on a beautiful, unseasonably warm March 19, 2012.
At his wake, as throughout his illness, we were overwhelmed by the outpouring of love and support we received. People waited for over an hour in the receiving line just to express their love for my father and support for my mother and all nine of their children. So while I had to watch my youngest brother, who was only 8 years old, try to process the fact that his dad was dead, I was also given a gift: seeing that there were many people who love us and would do anything to help us. It gave my family the opportunity to have no regrets. We all made sure to say what we needed to say, and to appreciate every family event, every holiday, every moment. We could all stand to have a reminder of that now and again.
Since my father’s diagnosis, and especially since we found out his disease was terminal, I have channeled my grief into pancreatic cancer activism. I have participated in the New England Pancreatic Cancer Research Walk with the Lustgarten Foundation, as well as lobbied my members of Congress with Pancreatic Cancer Advocacy Day in Washington, D.C. with the Pancreatic Cancer Action Network. The Marino Donnelly Foundation for Early Detection of Pancreatic Cancer is another way for me to not only alleviate my grief, but also to help others. I have long believed that if I couldn’t help my father, I can do my best to make sure that other families don’t have to experience what my family has had to endure.
Indeed, I am trying to acknowledge and repay the gift I have been given, even if it is in some small measure.