Lying in bed on Sunday morning, March 15, listening to the radio through a pillow speaker, I heard the news, "Actor and political activist Ron Silver died today after a two-year battle with esophageal cancer." I extended my left hand to my husband's side of the bed, feeling for his familiar warm body. A steady stream of questions crossed my mind. What were the details of his death? What stage was he at? What went wrong?
I didn't know much about the politics of Ron Silver or his acting talents, but I was familiar with his affliction - esophageal cancer (EC), a diagnosis given to my husband in October of 2008.
It was Thursday, Oct. 9, and the Day of Atonement, the most solemn day on the Hebrew calendar, when my husband, Michael, underwent an endoscopic procedure. He laughed the day before when the doctor said, "Nothing to eat or drink before the test. Can you manage that?" Michael smiled as if he had a secret. "I always fast during the High Holidays, and this one isn't going to be any different."
On Yom Kippur, we went to synagogue for the morning service. Michael's procedure was scheduled for 12:45 p.m. "Perfect timing," he said. "I'm able to immerse myself in prayer and in between undergo a medical test before returning to temple and breaking the fast."
I sat in the outpatient waiting area, half-listening to a conversation between two receptionists, wondering how everything happened so fast. I noticed my husband's symptoms four days before: difficulty swallowing, a dry cough when drinking liquids, and an early feeling of fullness during a meal. As a registered nurse, diagnoses crossed my mind - hiatal hernia, a narrowing of the esophagus, or maybe a nerve involvement.
"Your husband has a tumor at the junction of the stomach and the esophagus. I sent several biopsies to pathology. It doesn't look good."
"Maybe you need to sit down and discuss this," I replied. I glanced back at my husband's face; his eyes were closed and he looked relaxed for the first time since his symptoms began to surface. His body lay hidden under a cream-colored blanket and I wondered if he heard the word, "cancer." I needed to let him rest now and not worry about anything, as there would be time to agonize later.
The gastroenterologist had biopsied enough tissue from the tumor site to feel confident about his diagnosis. "The pathology report will be here in a couple of days," he told me, giving me hope that he might be mistaken.
I drove home while Michael dozed in the passenger seat. My mind raced as I thought about the diagnosis, my husband, our grown children, and our life together. At home he asked a few questions about the procedure and I told him we'd talk later. I didn't want to tell him what I knew.
I lived with a secret for the weekend - Michael had adenocarcinoma of the esophagus. I chose to keep it to myself until we had a definitive diagnosis. We played word games Saturday and Sunday, never once uttering the unspeakable word - cancer. Our lips formed the words tumor, swallowing disorder, and hiatus hernia, but we shied away from the "C" word.
We continued to pray, long after the evening service, long after the Kol Nidre and the Yizkor, long after the Sabbath, in an attempt to elevate our spiritual being and thwart away this vile disease.
The pathology report came back that Monday. When the doctor phoned me at home, I already knew what he was about to say - our life, as we knew it, was about to change.
Within weeks, I became an astute student of the transhiatal esophagectomy procedure, which would be performed when my husband had his business and personal matters settled, as one surgeon advised. When I looked at my husband, a robust and muscular man, I wondered what the results of this surgery might be - a surgery that entailed removing three-quarters of the esophagus and stretching the stomach vertically to replace a removed muscle, leaving behind a portion of the stomach intact. The surgeon warned us of the various types of potential complications and told us we should expect an initial weight loss of 20 to 30 pounds and possibly more during his post-op bout with radiation and chemotherapy. At the end of his consultation, the surgeon said, "This isn't your 'typical' surgical procedure."
Michael's surgery was scheduled for Nov. 5. I remember visiting him in the ICU after the procedure; lying on a hospital bed surrounded with intrusive connections: catheters, tubes, wires, and drains. His hospital stay totaled five days and although he was weak and on continual pain medication when discharged, he never allowed his frustrations to get the best of him.
My job consisted of caring for him, researching subjects related to EC, such as nutrition and tumor staging, and talking with experts in the field. Three weeks after surgery, I placed a call to the American Cancer Society and a local cancer wellness center, hoping to find a support group for Michael and myself. My sleuthing efforts quickly discovered a need for an Arizona EC support group.
As a health educator, RN, at Banner Good Samaritan, I understood the relationship between education and peace of mind for patients and their families faced with a challenging disease. Esophageal cancer - a cancer that affects 16,000 people a year and accounts for roughly 14,000 deaths (2008) - falls into that category.
In December, I began planning an EC program and by February, I submitted my written proposal. What began as a search for a "forum for EC survivors" ended with a blueprint backed by colleagues, surgeons and physicians. We're now well into the planning stage, which includes a strong partnership with the American Cancer Society to accommodate EC survivors residing in Arizona.
My husband continues to recover. He's 20 pounds thinner, working full-time, biking his usual 40 miles every Sunday, and exercising daily. But what surprises me most is Michael's enthusiasm and dedication to help others afflicted with the same diagnosis. He's looking forward to participating in Banner's support group and has already signed up to be our first guest speaker. I picture him walking up to the podium, adjusting his suspenders with his thumbs, clearing his throat, looking around the room and smiling. "I'm Michael Ratner, an EC survivor and this is my story."
Terry Ratner, RN, MFA, is a freelance writer in Phoenix. Contact her at info@terryratner.com.
