I hope that nobody reading this ever has to hear their doctor say, "I'm sorry, you probably have about 12 months."
Originally from Yorkshire in the North of England, I have been living in South Nyack since 1988, and, until the age of 56, had been reasonably lucky health-wise until my roller-coaster ride of 2011.
In January, pancreatitis put me briefly in Nyack Hospital. That was followed by surgery to remove my gall bladder in March, and then a referral to specialists at New York Presbyterian who initially diagnosed me with bile duct cancer and recommended the Whipple Procedure—a five-hour surgery which removed part of my pancreas, part of my liver and part of my intestine. (Then the magic hands of Dr. John Allendorf put everything back together again.)
Two weeks later, I went back for my first post-surgery appointment. It had taken the operation to reveal the fact that I did not in fact have bile duct cancer, but pancreatic cancer. However, the surgery had removed 100 percent of the growth and I was introduced to Dr. Saif, a cheerful Indian oncology specialist who, at our first meeting, explained that I was not only now his patient, but "his buddy."
Any preventative chemotherapy had to be put on hold for several weeks for me to recover from the surgery, and it allowed plenty of time for all the necessary tests prior to the planned treatment.
On July 12, I went back for my final pre-chemo appointment and was led into a room where Dr. Saif, two interns and my case manager were waiting. He gently broke the news that the previous day's scan had shown that I now had a 1.8 cm tumor in my liver—the cancer had metastasized, and I was now classified as stage four. I asked what the worst case scenario would be, and he said, "I'm sorry my buddy, probably around 12 months."
You know those rides at Disney where the floor drops out from under you? That's exactly what I felt at that point.
Well, after that, things happened pretty quickly—the following day I went back to NYP for surgery to install an intravenous port just below my collar bone, and the following week, chemotherapy and participation in a clinical trial started. From day one I decided there was only one course of action: to fight, fight, fight.
The staff on the 14th floor of the Herbert Irving Building at NYP came to know me as the guy with the English accent and the constant smile of optimism on his face.
Some people remember dates of weddings, births, other special occasions; I remember September 16, 2011 at 10:16 a.m. Dr. Saif called, explained that although he knew I would be at the hospital the following Tuesday, I had to know the news straight away. I could hear the excitement in his voice.
"My buddy, the scan you had yesterday showed that the tumor in your liver has disappeared to the extent where it cannot be detected—you truly are one of the lucky ones."
It wasn’t until my appointment the following week that I truly understood the significance of the news—no more pancreatic tumor, no more liver tumor, no tumors period.
The preventative chemotherapy continues until April 20. (Following a slight "glitch" and change of treatment regimen after a serious lung infection put me in NYP for two weeks in December.) Dr Saif is currently writing a paper on me for publication—as he explained just a few days ago, I am only his fourth patient in 15 years to show a "complete response to treatment for stage four pancreatic cancer." His third "success story" had visited him a few days earlier; she has just celebrated seven years as a survivor.
On April 21, I will be celebrating life, love and hope by participating in the Purple Stride New York City 5km Walk in Riverside Park to raise funds for the Pancreatic Cancer Action Network. It's an amazing organization that provides support to people like myself, and also works to bring publicity to the fact that pancreatic cancer is rapidly becoming known as "the silent killer." Most cases are not diagnosed until the late stages, and hence the survival statistics are pretty grim.
I will also be walking in support of my brothers and sisters who are fighting this disease, to give thanks for the friends, family, and colleagues who gave me the courage and strength to fight, and the truly amazing staff at New York Presbyterian Hospital. I will be eternally grateful.
If it is only a tiny amount, I would be grateful for contributions for my participation in the walk:
http://purplestride.kintera.org/nyc2012/johnwhitley
Even one dollar may be the dollar that helps to stop this disease—and if you see me on the streets of Nyack, stop and say hello... I give hugs for free!
—John Whitley
