Anatomy of a Sickness
My troubles began in December 2019 quite innocuously—a mild pain in my midsection which could easily have been ignored for a few weeks or maybe a month. It was soon joined by more intense pain in my back. Perhaps, I thought, I had strained it at the gym.
My first doctor, a trusted internist, told me to take an over-the-counter medication for a few days. When I didn’t get results, I saw a trusted gastroenterologist who thought I had an ulcer. I insisted I wanted an endoscopy, even though my doctor didn’t want to put me through that invasive procedure. Reluctantly, she performed the endoscopy, which actually showed a tumor in the pancreas. I knew my condition was serious when I was quickly scheduled for a second endoscopy the next day to provide more detail and clarity with a second doctor on the scene.
Despite my shock and fear over having a pancreatic tumor, I knew I had to face this diagnosis head-on. The medical wheels began to roll at a very brisk rate. We located a surgeon, Dr. Michael Kluger, at the prestigious NewYork–Presbyterian/Columbia University Medical Center. If you had seen me that cold day in January 2020, walking into Columbia, you would have thought I was a nurse rushing to work or maybe a physician on the way to making daily rounds. I was walking at a healthy, energetic clip, limited only by the surge of pedestrians in front of me doing the same. You would have guessed wrong.
Why NOT Me?
I had already been diagnosed as a pancreatic cancer patient, having just undergone an extensive series of diagnostic tests. Why had this happened, I wondered. I thought I had always done the things people do to live in a healthy way: I walked briskly every day for at least a half hour. I didn’t smoke or drink. I went to our family doctor on a regular schedule for check-ups. And I conscientiously attended a local gym every day to work out on an upright exercise bike for the better part of an hour. In addition, I cared for my husband, Martin, a retired dentist. I took care of a ten-room home in Yonkers, New York, and did everything that being a suburban housewife entailed—all this while teaching secondary math for 24 years to energetic middle school and high school students.
Did I ask, “Why me?” No, I actually asked myself the opposite question: “Why not me?” My mother, at the age of 88, died of ovarian cancer. After many years of working in the garment industry in New York, my father was diagnosed with liver cancer that was probably pancreatic cancer. So why, indeed, not me? Three years ago, I underwent a lumpectomy for DCIS (ductal cancer in situ or in place), but I was told my pancreatic cancer was totally unrelated to this previous cancer.
An Unwavering Support System
So there I was in the busy lobby of NewYork–Presbyterian, struggling to keep up with my daughter, Ellen, who preceded me, as usual. Long-legged and determined, she was and is, my “case manager,” wonderfully capable and reliable, as is my son, Robert, a retired retina specialist living in Florida. They motivated me, cheered me up when things seemed unmanageable, and in Ellen’s case, transported us back and forth to doctor appointments. Marty, my faithful and loving husband of about 60 years, brought up the rear. Eighty-six and somewhat stooped from leaning over a dental chair for more than 40 years, he is still my rock and inspiration.
On the eighth floor, we entered Dr. Kluger’s crowded waiting room. Who knew so many people could have problems like my own? Where had they been hiding? Until Alex Trebek’s recent disclosures, I thought pancreatic cancer was somewhat of a rarity.
There was something about Dr. Kluger I liked from the onset. Youthful, with a welcoming smile, he could have been a neighbor or a former student now grown. Because it was discovered early, my tumor measured only 3 x 1 mm. It was located in the head of the pancreas and as the doctor explained, it would be advisable to undergo Whipple surgery, a procedure named after Allen Whipple, the early 20th century physician who had devised it. This surgery was not for the faint of heart. It involved removal of not only a part of the pancreas, but the entire gallbladder, the common bile duct, a section of the stomach and a large section of the duodenum (small intestine.)
Dr. Kluger scheduled my surgery for January 14, 2020. However, we subsequently ran into a major snag when with further investigation, doctors discovered an artery was lying very close to the tumor, precluding surgery. I would first need two months of chemotherapy—which turned out to be three months—to shrink the tumor before surgery could be attempted.
While I was undergoing chemotherapy, I spent a lot of time agonizing over whether or not the Whipple surgery was the course of action I wanted to pursue. Was I brave enough to go ahead with it? Would it work? Even if I could gain some months (or years?) of added life, was it enough to justify the long months of post-operative recuperation time necessary? I hesitated to commit to this drastic mutilation of my body, but my family was adamant this was my only viable option with even a small chance of beating the cancer. There really was no “good” choice with assured results. I’m 82 years old, I argued. I’ve lived a good life. Why don’t I just enjoy the remaining time I have left?
Families can be very persuasive, and mine was no exception. Thomas Moore once said, “The child is father to the man.” At some point in life, the parent and child reverse roles and authority seems to reside in our offspring. We then depend on our grown children for major decisions. At their prompting, I decided to fight with all my strength and undergo the Whipple procedure. Early in the morning on May 28th, I arrived at the surgery floor of NewYork–Presbyterian, scared stiff.
Facing My Fears
The coronavirus pandemic was well into its third month by this time and going strong. Somehow, despite the serious coronavirus threat and the hospital rules prohibiting family members from accompanying patients to the hospital, I summoned the courage to enter the hospital alone, facing my extreme fear about the surgery and about the walk through the crowded corridor and elevator.
My operation had been scheduled for five hours, but I honestly don’t know how long it took. I remember being situated in my room after the surgery in good spirits because, incredibly, I had made it through. I stayed in the hospital for six days during which time I was alternately very tired or very bored, as the pain management at Columbia was excellent. I was now prepared to follow this journey whichever way it might lead. Meanwhile, I had hope for the best outcome possible. My plan is to continue with chemotherapy for two months as a preventative measure to ensure no cancer cells escaped during surgery.
Raising Visibility
In our country, pancreatic cancer may be thought of as the “stepchild” of other cancers. It receives less federal research funding, with the majority of the research funding allocated to more prevalent cancers. This disease has some of the gloomiest statistics, and sometimes it’s hard to remain positive. However, it is my intention to share my story to call attention to pancreatic cancer and to emphasize the need for more research and more funding so patients can be diagnosed before the disease spreads extensively. I remain hopeful my outcome will be positive, and I also am confident the research the Lustgarten Foundation is supporting to advance early detection and new treatments will ensure many more patients become survivors.
There are some important lessons to be learned from my experience
- Never ignore your symptoms if they don’t disappear in the first couple of weeks.
- Do not be convinced by others that “it will pass.” The doctor’s assurances must be challenged if you know in your heart they do not make sense to you. Had I listened to Doctor Number Two’s advice, I would have been treated with antibiotics for an ulcer that didn’t exist.
- Be your own advocate. If you feel things are not right, they probably aren’t.
- Seek other medical opinions. Do not be afraid to subject yourself to all the diagnostic testing recommended. It is painless.
- Don’t get discouraged. Your doctors are trying hard to do what’s best for you. Follow their advice, but question it if necessary. It has to make sense to you. You know your body better than you think. Good luck!