By Marty Levine
On a Monday in April 2009 I went to lunch with some colleagues and had a sensation of food getting caught on its way down. I was able to clear it with water.
That night at dinner I had the same experience.
The next night, Tuesday, my wife and I went to see our favorite band, The Grateful Dead, in DC and even a drink of water was giving me intractable heartburn. I ingested an entire roll of Rolaids in a two-hour period, with no relief.
The next day, Wednesday the heartburn and nausea were so bad I stayed home from work. That night I went on the internet to try to determine what might be causing these symptoms. UH-OH! I told my wife, “Dear, I think I’m in trouble. I either have a bad case of GERD…or I have esophageal cancer.”
Thursday I scheduled an endoscopy and on Friday a 3cm adenocarcinoma was found at the junction of my esophagus and stomach.
I have many friends who are physicians so I pulled them together and told them that I needed help. They gave me advice that may have saved my life….go for treatment at a place that sees and treats a lot of this. It’s a rare disease and you have to be in experienced hands.
I did a nationwide search and narrowed it down to Duke University Medical center, M.D. Anderson and Johns Hopkins. Because I live in DC and would have had to move to the other places for months, I chose Hopkins in Baltimore.
When we met with the oncologist at Hopkins she reviewed all of my information and told my wife and me that I had Stage 4 EC. I looked over her shoulder and saw on her computer screen that I had an 11-16 percent chance to live ONE YEAR.
That’s the end of the bad news.
I began a very aggressive regimen of radiation and chemotherapy. I had a fanny pack which pumped Chemo into me 24/7 for six weeks. Every other Monday I had an in hospital infusion of another chemotherapeutic agent for 4 hours. This was being done in conjunction with five-days-a-week of radiation.
My friends, it was no big deal and completely tolerable.
I know everybody reacts differently…but just because you have heard horror stories about the treatment don’t assume that will be your reality. I breezed through all of it, losing no hair and only 2 pounds. At the conclusion they wanted to wait eight weeks to do the surgery. I wanted this damned thing out of me and pushed for an earlier surgery.
At exactly five weeks after the chemo I had THE (trans-hiatal esphagectomy) surgery.
Now, it’s a big deal surgery to be sure, long and complicated, but you are in the ICU for a few days following the surgery and on drugs.
I remember virtually nothing about the few days following the surgery. When the surgeon came to speak with me I asked whether or not the treatment had shrunk the tumor. He looked at me and said, “There was no tumor left…it was completely eradicated by the chemo and radiation. That happens less than 25 percent of the time.”
I was now feeling better about things…and then I was told there was a lymph node positive for cancer….it was not directly contiguous to the tumor (this is why I was stage 4).and we were going to do eight more weeks of chemo.
To be candid, that second round was tougher because I had lost 30 pounds following the surgery and was not as big and strong…but I got through it. I had four scans a year for the first two years. All clean.
I had 2 scans a year for the next three years. Clean as a whistle.
On August 6, 2014 we celebrated my five-year anniversary being cancer free. I’m working, living my life, traveling and enjoying my friends and family.
Are there consequences of the treatment and the surgery? Of course.
Eating and sleeping can be challenging but other than that I’m good. I’m exercising, have gained back two thirds of the weight I had lost and can see my family’s smiling faces.
Friends, I share this story to demonstrate EC is not a death sentence. Statistics are numbers but we are people. Strides are being made every month and year.
For example, my oncologist told me that a chemo agent like Oxaliplatin is changing the landscape for EC.
So, keep fighting…keep your head in the game and positive …if the mind gives in the body will follow…and keep hope. This beast is not only treatable but curable….best…ML.