When the ultrasound technician at the hospital exclaimed “Oh, my God” Ursula Stell knew the cause of the increasing pain in her knee and calf she had experienced over the previous month was not good. But no one could tell her what it was.
After a heartbreaking series of dead ends, doctors without answers and a biopsy that left her with 40 staples between her knee and her calf on Thanksgiving, she got an answer.
It was epithelioid sarcoma — a cancer so rare and deadly it’s considered stage IV just by its nature.
The very next day, she was in surgery, but because vessels and nerves grow through the tumor instead of around it, it was impossible to entirely remove the cancer.
“They told me they would have to take my leg to remove the cancer,” Stell said. “They wanted to take all my lymph nodes, which are at the top of your leg. They wanted to cut my leg off at my hip. I couldn’t imagine…”
Stell couldn’t find much information about her cancer or her options, and doctors couldn’t provide much help.
“The only story I could find was on a man who had it who had his leg amputated at the hip and died three years later,” said Lisa Cisco, Stell’s friend and caretaker. “I didn’t tell her, though. I didn’t want her to lose hope.”
“I go so frustrated that no one could tell me anything at all,” Stell said. “My baby was 11 years old, and I needed answers. I needed to know if I needed to make arrangements for my daughter.”
A 1-800 medical information line operator whom Stell called out of desperation connected her with the Cancer Treatment of America.
Stell had a full leg amputation scheduled for Jan. 5, but flew out to the center in Chicago after Christmas.
“When I got there, the doctor said not to let the other doctors touch my leg,” Stell said. “I asked him if he could save it and he started sobbing. He had had the same cancer. He told me he couldn’t save the whole thing, but he could save part of it. As long as I have my life, losing my leg wouldn’t be so bad.”
Doctors amputated her leg mid-thigh on Jan. 14 and removed only one lymph node.
“My leg weighed 21 pounds when they removed it,” Stell said.
That’s when the pain began.
“I began having what they call phantom pain,” Stell said. “I understand why Vietnam veterans who were amputees rocked back and forth and cried out in pain. Everyone thought they were mad, but the pain is real. I understand why people killed themselves over it. It feels like you’re losing your mind. The pain was so intense I just sat up in bed and rocked back and forth. I’ve gone through three births and never felt any pain like this. And there’s nothing you can do to stop the pain. It’s hurting where nothing is.”
While Stell no longer suffers physical pain, she said one of the most difficult things is when people don’t look her in the eye.
“I don’t mind explaining anything to anyone,” Stell said. “What bothers me more than anything is when someone won’t look me in the eye.”
Because people won’t look her in the eye, Stell has given up her wheelchair and uses crutches to get around. She can cook, drive and clean now.
“I’ve figured out how to do just about everything except vacuum the house,” Stell said.
Stell’s next step in her road to recovery is chemotherapy, which she begins on Tuesday.
“I won’t wear a wig,” Stell said. “I’m going to lose my hair, but I’m not wearing a wig. So, when you see a bald lady around town, honk and say hi.”
With the help of a prosthetic leg and her resilient spirit, she hopes to be back working at the Farm Fresh Pharmacy and out weeding her garden by mid-August.
No matter what, though, she said she’ll be at Suffolk’s Rockin’ Relay for Life, which she has walked in since 2002 for her father who is a cancer survivor.
But on May 14, a week after her first chemo treatment, Stell will be walking with the survivors.
“I don’t regret a single thing that has happened,” Stell said. “It’s brought me closer to my family. You realize who your true friends are. It’s brought me closer in my faith to God, and He’s giving me another chance to have life. I’m not going to waste it. I know whatever comes next I can handle it.”