Monday March 3, 2014 is the day my life was saved. It’s the day I was given a second chance; it’s greatest day of my life. March 3, 2014 was the first time I was told that I may have pancreatic cancer. It sounds crazy to think that being told you may have one of the deadliest forms of cancer is something to reflect fondly upon, however because of the phone call I received that morning I have a great shot at living a long life.
During the last week in February, I started experiencing a burning pain throughout my stomach. Like most guys my age, I just assumed it was due to something I had eaten or the couple of beers I had that day watching a Bruins game with my friends. I took a handful of antacids with anticipation that they would take care of my problem. Two hours later the burning hadn’t subsided at all, but I managed to fall asleep that evening and figured it would be fine in the morning. When I woke up the burning feeling was still just as intense as the previous evening, so in response I took a few more antacids and went off to work. Halfway through my workday I was becoming worried because the pain was getting to the point where I couldn’t sit at my desk without bending over in discomfort. At that point I made the most important call of my life: I placed a call to my primary care physician.
The registered nurse on duty got me into the office within two hours of my call. After going through all of my symptoms she concluded that I may have some gallstones built up. She put me on medication in order to sooth my stomach and gall bladder and then insisted on an ultrasound just to be sure. I scheduled an ultrasound for the following Monday at Beverly Hospital in Danvers. During the week leading up to the test I was feeling significantly better, and that morning was like any other morning. My family and I all anticipated completely normal results.
On the morning of my ultrasound, I was at my desk by 9:15, and I had no idea that within 45 minutes my life would change forever. I received a call from my primary care office saying they have found some disturbing results with my ultrasound. A 4cm spot was seen on my pancreas, and that this spot could be one of two things: either a few gall stones may have migrated into my pancreas, or (the most likely scenario) it was a tumor. The nurse told me this was the hardest call she has ever had to make. Telling anyone they could possibly have pancreatic cancer is devastating news, but telling a 36 year old who seems perfectly healthy that they may have one of the deadliest forms of cancer was even more than she could handle.
My doctor immediately placed a call to the Gastroenterology Department at Beverly Hospital to arrange for an Endoscopic Ultrasound. I underwent the procedure the following Monday, March 10, 2014. The nurse called my parents into the post procedure recovery room, which led them to believe that our worst fears being confirmed (generally, they don’t bring you in to join the patient this quickly). A friend’s mother was a nurse on duty in the Gastroenterology department that day, and even though she was not my nurse she immediately asked if she could come into the room with us to help console my parents. Her sitting in with us meant more to my parents and I then we could ever truly express.
The doctor had some news that was hard to share with us. He informed us that, unfortunately, early indications were that in fact it is a tumor, which was misshaped and seemed to be pushing on the outside of my pancreas. He took a biopsy while doing the endoscopic procedure and was going to have the radiology department at both Beverly Hospital and Beth Israel Hospital look at, and he would call us as soon as the results came in. For the next four days my family was by my side as we awaited with both anticipation and fear of the phone call that was sure to come. Anticipation to get the results with hope that something could be done, fear that the results would be what we were dreading the most. Finally on Thursday, March 14, I received the call. Both the Radiology Departments at Beverly Hospital and Beth Israel Hospital seemed to think it was a neuroendocrine tumor. There were no signs of lymphoma or malignancy seen in the biopsy, however I was told I need to meet with at least one gastrointestinal surgeon immediately. Surgery was the best option to remove this tumor, and this needed to be done quickly.
Within the next week I met with highly recognized surgeons at both Massachusetts General Hospital and Lahey Hospital in Burlington, Massachusetts. Both doctors confirmed that it was a neuroendocrine tumor and that a Whipple Procedure needed to be done and it needed to be done immediately. The Whipple Procedure is one of the most complex surgeries that is done today. It’s highly recommended that given the opportunity patients should go with doctors with substantial experience with this particular surgery. While both surgeons came highly recommended and were extremely helpful in guiding my parents and I through the whole process, I decided that Massachusetts General Hospital was the right location for me.
The procedure was scheduled for April 2, one day short of being exactly a month to the day of the initial phone call. Over the last two weeks of March I underwent numerous tests just to reconfirm that there was no indication of metastasis to other organs in my body. Thankfully all tests were coming back negative and everything looked to be as my surgeons anticipated.
Finally the date came, it was time to undergo my Whipple. Due to the complex nature of this surgery the process was expected to take around 9 hours. My parents, who have been with me for every step of this scary journey, were insistent about staying in the waiting room throughout the day. When the surgery was complete and I was still sleeping in the recovery room my surgeon came out and gave my parents, my brother and sister the great news. The tumor was removed cleanly, my margins were clean and 15 lymph nodes were taken out to be checked further. Timing is everything in life and was never more evident than during this whole period. My family was told that the tumor was misshapen and was in fact malignant. A few months later and my NET tumor would likely have metastasized, which would have completely changed my prognosis. While in the hospital my parents and I called the Registered Nurse who initially recommend the ultrasound and thanked her for saving my life. Emotions couldn’t have been higher or any of us.
As I get further away from my surgery I am feeling better and better on almost a weekly basis. Fatigue and digestion problems are still a frequent issue, but those are little inconveniences compared to what could have been. I will be going through regular CT and PET scans to monitor my body and to make sure my levels remain in place. However the lymph nodes all came back negative, my margins were clean and my long term prognosis looks extremely favorable.
I have spent many nights reflecting on why I was so lucky compared to many other wonderful people who weren’t as fortunate with this disease as I have been. I truly believe it was a combination of the prayers and support of so many loved ones and through early detection at the insistence of my primary doctor’s office that I have that ultrasound.
Early detection is why I have decided to start the Marino Donnelly Pancreatic Awareness Foundation. My goal is to help as many people as I can who are diagnosed with this horrible disease. Every day is a blessing once you have been through something like this and I want to help give others that chance as well.
Just in case you were wondering what that burning pain ended up being, the doctor said in all likelihood it was in fact a gallstone. It had nothing to do with my tumor, timing is everything in life.