Normally a day reserved for breakfast in bed and family fun, Mother’s Day 2014 for Michele Rifkin was, instead, filled with darkness.
Fresh off six months of grueling treatment for esophageal cancer, Michele found herself back in the hospital with a collapsed lung, pneumonia and a blood clot. Pumped full of pain meds that left her dazed, hallucinating, catatonic and battling severe depression, Michele had given up.
“I was really in a bad state. It was the worst days of my life,” Michele says. “I just wanted to die.”
The story of how this normally vibrant and jubilant woman – with a loving husband of 31 years, four beloved children, and a job at Trader Joe’s she adored – had sunk to such hopeless despair is a cautionary tale that stretches back more than a decade.
Having long suffered from chronic heart burn, Michele was on a regimen of medications that kept her symptoms at bay. As far as she was aware, as long as she continued to fill her prescriptions every three months, she was perfectly healthy.
“I felt great because I was on heart burn medicine,” she says. “In the meantime, all this stuff was billowing in my esophagus.”
Then, in early January 2014, a new symptom arose. Michele described it as choking, but lower in her stomach. Her primary care physician examined her and referred her to Dr. Chad Stepke, a gastroenterologist at Columbia St. Mary’s Gateway Medical Clinic, who performed an endoscopy and colonoscopy.
The next day, Dr. Stepke called Michele and asked her to come in right away – and to bring her husband.
“I knew something was obviously wrong,” Michele says. “But I thought it was the colon because I didn’t know anyone with esophageal cancer. You don’t really hear much about it. But I had stage 3 esophageal cancer.”
While rare – accounting for only about 1 percent of all cancers in the United States – esophageal cancer has one of the lowest survival rates. Even with advancements in detection and treatment, the survival rate is still approximately 20 percent (up from as low as 5 percent 40 years ago) since it often goes undetected for so long. Symptoms typically don’t arise until the cancer has become advanced.
The most common symptom to be on the lookout for is trouble swallowing or even choking on food. This will typically get worse as the cancer grows and spreads, narrowing the esophagus further. Pain while swallowing is also fairly common. Some people complain of pressure or burning in their chest – and, in cases such as Michele’s, this is often mistaken for heart burn and treated as such.
Other symptoms can include a chronic cough, hoarseness, vomiting, hiccups, bone pain and bleeding in the esophagus (which would present as black stools). If you have any combination of these symptoms, you should see your doctor for a thorough check-up.
For Michele, in addition to the esophageal cancer, Dr. Stepke found she had a disease called Barrett’s esophagus, a serious condition related to gastroesophageal reflux disease (GERD) that increases one’s risk for esophageal cancer. Essentially, Michele had been suffering from GERD for more than 10 years but had been masking the heart burn (the primary symptom) with medication.
“Had I been scoped along the way – nothing is guaranteed – but they would have probably found the Barrett’s and treated it, and I wouldn’t have gotten cancer.”
There was no time to dwell on what-ifs, though, and Michele immediately started a six-week course of chemotherapy and radiation at Columbia St. Mary’s Polly and Bill Van Dyke Cancer Center Milwaukee.
“We walked through those big glass doors at the Van Dyke Cancer Center Milwaukee and I said to my husband, ‘This is the start of our new life,’ and we both started crying,” she says. “The first person that met me when I sat down was Sue Luedcke, my nurse navigator. She was more than amazing. I was crying. I was mean. I was angry. And she stood next to me at every appointment, every treatment. We turned out to be best friends at the end.
“The nurse navigators are one of the best things the Van Dyke Cancer Center Milwaukee has. Everyone was so warm and hopeful. They acted like I was the only patient in their life. I couldn’t have gotten through this without Sue and those doctors.”
From late January to March, Michele received radiation treatment five days a week and chemotherapy once a week. With her stage 3 tumor reduced to a stage 1 – thanks to the excellent care provided by her medical oncologist, Dr. Varsha Shah, and radiation oncologist, Dr. Craig Schulz – Michele was ready for surgery. On April 18, she underwent an esophagectomy, which involves removing the lower two-thirds of the esophagus, then cutting the stomach in half and using the stomach lining to create a new esophagus that attaches by the throat. The remaining stomach is then repositioned higher up in the chest to accommodate the shorter esophagus.
It was shortly after returning home from her surgery when things took a sudden turn.
“I went home and I wasn’t getting any better. I wanted to go to inpatient. I told my husband to put me in hospice care. I couldn’t handle it anymore,” she says. “I was in so much pain I couldn’t breathe. I’d lie on the couch for eight hours a day not knowing what I was doing. I was so depressed.”
Thankfully, her friends were there for her. They staged an intervention and a doctor friend helped her scale back the pain medication. Slowly, she emerged from the fog.
“Without my friends and family, I’d be dead. Honestly.”
Today, Michele’s life is back to normal – well, as much as it can be. She has to be careful about what she eats and how she sleeps, but she’s her old energetic self again. “I’m back at work 47 hours a week and feeling phenomenal.”
She’s also taken on a new cause. She’s committed to helping raise awareness about esophageal cancer and ensuring no one else has to be blindsided by this disease like she was.
“If you have any of those symptoms – heart burn, acid reflux, a cough, change in your throat or stomach, anything – go to a gastroenterologist,” she says. “You need to get scoped. It only takes a minute and it can save your life.”