- Testing for long-running stomach trouble reveals pancreatic cyst
- Blocked bile duct leads to finding intraductal papillary mucinous neoplasm (IPMN)
- Whipple procedure followed by chemotherapy
- Another tumor leads to complete pancreatectomy
- A lung node and a lobectomy
In 2011, I was a healthy 67-year-old running marathons, doing triathlons, and traveling the world as a freelance travel writer.
Then one July day, I woke up with horrible diarrhea. It went on for weeks; not one of the four different gastroenterologists I saw could solve it. I was given everything from antibiotics (Cipro, metronidazole, doxycycline hyclate, paromomycin sulfate), drugs used for irritable bowel syndrome or colitis (diphenoxylate, VSL#3 powder), to pancreatic enzymes (Creon). In September 2011, I had a colonoscopy and then an MRI, which revealed a small pancreatic cyst. I was told it needed to be watched but didn’t think much of it.
The diarrhea continued and I was given more antibiotics (Xifaxan, Cipro, and metronidazole) and more drugs used for irritable bowel syndrome (Lotronex). In January 2012 I had another MRI, which revealed mild pancreatitis but no evidence of cancer.
One morning in October 2012, my stomach swelled up. I thought it was gas so I mainlined Tums antacids; the gas wouldn’t go away and I was in terrible pain for no reason. There were no taxis around so I rode a Citi Bike to Weill Cornell’s emergency room, where it was discovered I had a blocked bile duct requiring a stent. Two days later, the stent became infected, so they put in a second stent. I had two endoscopic retrograde cholangiopancreatography (ERCP) procedures to put in the two stents. While in the hospital, I was told I had an intraductal papillary mucinous neoplasm (IPMN) of 0.3 cm, invasive pancreaticobiliary type. The third-year resident told me I would need a Whipple—something I thought nuns wore on their heads.
Finding the Right Surgeon
As Whipples are a complex surgery, I shopped around until I found the best pancreatic surgeon in New York: Dr. William Jarnagin of Memorial Sloan Kettering Cancer Center (MSKCC). He performed the Whipple on September 10, 2014. While recovering in the hospital, I developed a number of bacterial infections: Clostridium difficile (C. diff), Escherichia coli (E. coli), and extended spectrum beta-lactamase (ESBL). Still, the operation went perfectly and my nodes were negative. Nevertheless, Dr. Jarnagin referred me to oncologist Dr. Eileen O’Reilly at MSKCC, another medical superstar, who recommended I do six cycles of adjuvant gemcitabine to decrease the chance of a recurrence of cancer.
The chemo was worse than the Whipple. I was sick, weak, nauseous, and had no energy. On my week off from chemo, I went on assignment to Scottsdale, Arizona, and landed up in the ER for six hours, completely dehydrated and chilled. Six weeks later, finally, I was back to my normal lifestyle and extreme workouts.
Back In Treatment for Another IPMN
Then, in December 2015, I developed acute pancreatitis. Two months later, follow-up testing with an endoscopic biopsy revealed another IPMN. This time, Dr. Jarnagin suggested a complete pancreatectomy and splenectomy so I’d never have to go through another pancreas operation again. This operation was even more painful than the Whipple, but I kept doing endless laps around the hospital floor to speed up recovery, and again, six weeks later, was back to normal.
The problem was that without a pancreas I instantly became a type 1 diabetic. I saw Dr. Jason Baker, an extraordinarily brilliant endocrinologist at Weill Cornell, who said, “Don’t worry, we’ll find some pancreatic cells in there.” But they didn’t even find one, that’s how thorough Dr. Jarnagin had been.
Dr. Baker saw me through my monthly changing insulin doses as required. I went on continuous glucose monitoring (CGM) and tried two different insulin pumps but hated them because they kept getting blocked up. Having a pump was more trouble than it was worth. I went back to shooting insulin through needle pens and Dr. Baker continued to monitor my diabetes and lifestyle, and still does. Without him, I would be totally depressed and unable to deal with this insidious autoimmune disease. He is the most important doctor in my life.
Third Time Around
I thought my cancer was over but in 2017, during a routine MRI, the doctors noticed a lung nodule that had grown on my right lobe. It was in an impossible place to remove, so in April 2017, another superstar, Dr. Matthew Bott of MSKCC, did a video-assisted thoracoscopic surgery (VATS) lung resection to remove a 0.5 cm metastatic pancreatic adenocarcinoma. I would like to think that this was the last errant cell that escaped from my pancreas, not the beginning of ongoing lung cancer. The operation itself was so painful that it made the other two seem like bad colds.
I was required to blow on a spirometer every few hours, but it was almost impossible because I kept coughing. And then I had an idea: I play blues harmonica and jam two or three nights a week. I happened to have a harmonica with me. I had taken it to the hospital to play “Amazing Grace” to my sister and her partner, who had accompanied me to the hospital. My sister does not like the sound of the harmonica, but she had no choice—it was right before they wheeled me in. We both thought it was going to be the last song I’d ever play.
The day after the lobe removal, I pushed myself out of the hospital bed, grabbed my harmonica, and wheeled myself, tubes attached, to the patient lounge. I closed my eyes and played a blues tune. Suddenly I heard someone say, “Wanna jam?” I opened my eyes. It was the music therapist, who happened to be passing by. We played a slow blues shuffle. Suddenly doctors and nurses and other patients were standing in the doorway applauding. Granted, I wasn’t that good, but considering the circumstances, I felt like Stevie Wonder.
It is now two years later. I am back to working out, back to my weekly blues jams, back to traveling. I have four trips coming up in the next three months about which I am very excited. I don’t do triathlons or marathons anymore because I don’t really have the stamina or will to train that hard. But I still do weight training, cycling, hiking, walking, and gym classes because I know it was my physical fitness which allowed me to recover so quickly after each operation. But more than my fitness, it is my four great doctors—Jarnagin, Bott, O’Reilly, and Baker—who are responsible for my still being alive today.
I am now 75 years old although age is just a number and it does not define my life. What does define my life is fighting. The grim reaper lost to me three times, and if I continue to work out and remain strong, I’ll beat him again if he ever comes back. I love kicking butt.
Margie shares her positive attitude in the video “You’ll Get Through It.”