DELANO, MN While many are preparing to fill their stomachs with turkey and their favorite side dishes, others are thankful to be alive despite not having stomachs.
Sue Topel, of Delano, is one of those people.
She hopes sharing her story will help bring awareness to the second-leading cause of cancer deaths worldwide.
It started in 2010 with indigestion and bloating, which her doctor suggested treating with over-the-counter medications.
“It really did not seem to be helping, so I just assumed I would have to learn to live with my problem and deal with some indigestion whenever I ate,” Topel said.
By the time of her next annual physical, Nov. 10, 2011, she was struggling to swallow and had blood in her stool, prompting her doctor to order an endoscopic scan to check for a bleeding ulcer.
Instead, they found Helicobacter pylori infection and a mass at the junction of her stomach and esophagus.
“I was told it was nothing to worry about, but they wanted it checked anyhow,” Topel said.
On Dec. 5, 2011, she received her diagnosis.
“A million thoughts started flowing through my head,” Topel said. “Was I going to die? What would my family do without me?”
She questioned her strength.
She thought of how her older sister struggled with treatments for breast cancer and how she had passed away.
She decided she would hold on to life, as her sister had fought to do.
“My first chemo treatment was Dec. 23,” Topel said. “Just in time for Christmas.”
Within a week of continuous chemotherapy, Topel was struggling to eat, due to sores in her mouth and throat. “Magic mouthwash” numbed the pain, but not long enough to eat a full meal. She also had pain in her hands and feet that was “like being sunburned from the inside out.”
A blood clot at the site of her chemotherapy port sent Topel to the emergency room. When CT scans and ultrasounds on her neck showed nothing wrong, she was sent home, only to return two days later.
“I spent the next three days in intensive care to clear the clot and was put on blood thinners for the remainder of my chemo sessions,” Topel said.
She was given a break from chemo a week early, but that didn’t stop her from losing her fingernails and toenails.
“They just turned black, and then they started to come loose, and soon they would fall off, one-by-one,” Topel said. “It was very difficult to deal with.”
Her first surgery to remove the tumor, as well as parts of her stomach and esophagus took place April 12, 2012.
“They reconnected the stomach with the esophagus by pushing it up through the diaphragm,” Topel said. “That should have worked, but the final pathology test showed there were still cancer cells.”
Her entire stomach would need to be removed.
“I was blown away,” Topel said. “How can a person live without a stomach? Where does your food go?”
She was reassured that life could go on without her stomach and her doctors suggested moving forward as soon as possible.
“My husband, Fred, who is my guardian angel, told the doctor he didn’t think I looked just right,” Topel said, adding that the surgery to remove the rest of her stomach and part of esophagus was put off until April 20, 2012.
But, complications kept doctors from connecting her esophagus to her small intestine at that time. Instead, everything she took in by mouth went into a spit fistula and she was put on a feeding tube for 13 hours each night.
Her birthday, April 24, 2012, brought another surgery, this time to cut off more of her esophagus because it was dying. Now, doctors doubted they would be able to connect the remaining portion of her esophagus with the remaining portion of her small intestine, meaning they would have to utilize her colon.
“I had to wait for a year and a half to make sure everything was healed and that the cancer didn’t come back,” Topel said.
The 18-hour procedure was set for Oct. 2, 2013.
“After seven hours, the surgeon came out to talk to my husband and said I was fine and they had used the small intestine,” Topel said. “I went home in two weeks instead of the six they thought I’d be there.”
She got the OK to go home and eat by mouth, but later learned the connection between the esophagus and small intestine was leaking. The leak resulted in a bone infection, due to the fact that they had removed part of her collarbone, sternum and her first rib.
After a surgery to fix the leak and pectoral muscle-flap surgery, Topel returned home Dec. 22, and was unable to eat by mouth until March.
Throughout the process, Topel lost about 130 pounds.
Living without a stomach affects different people differently. Topel said her diet has not changed much, but she does have to chew very well. Because Vitamin B12 is processed in the stomach, she receives a Vitamin B12 shot to avoid a deficiency.
Without a stomach, she doesn’t feel hunger pains or the sensation of being full.
November is Stomach Cancer Awareness Month.
“What a perfect month to promote stomach cancer awareness: when everyone stuffs themselves on Thanksgiving,” Topel said.
She encourages people to visit www.nostomachforcancer.org to learn more about stomach cancer and to donate to research and awareness efforts.