It was barely a month after her mother passed away that Penny Hofer found the large lump on the back of her leg. It didn't hurt and it didn't bother her but it turned out to be sarcoma, a cancer of the connective tissue that affects 12,000 Americans each year.
Hofer had spent most of 2010 helping her mother fight a terminal illness in Iowa. A nurse at Alegent Creighton Health Mercy Hospital, she works at the Medical Access Center, and would visit her mother every week. Hofer was experiencing a lot of tension and muscle ache but didn't give it much thought.
"I spent the year ignoring my own body and taking care of Mom," she said.
Her mother died in mid-October. Hofer found the lump in November and had an MRI right away. "But we pretty much knew what we were dealing with," she said. The MRI and a biopsy confirmed it was sarcoma.
"I was at a loss. I was having difficulty with the loss of my mother. We were very close. I could hardly absorb it. I didn't know which way to put my grief. I was floating through life. It was as if my mind and body were not attached," she said. Hofer did extensive research on sarcoma. "I never did ‘why me?' There was a lot of ‘how could this happen?'"
In December, physicians removed Hofer's entire hamstring muscle, including the tumor. She said the incision ran down the length of her thigh. But she considered herself fortunate. In the past, surgeons would have amputated a sarcoma patient's entire leg.
Pathologists explained the sarcoma was a "grade three." The grade helps predict how aggressive the sarcoma is likely to be, for example how likely it is to grow and spread to another part of the body. A high-grade tumor is more likely to spread to other places, or to metastasize. "I was at the top of the scale," she said. "This was a big worry." But she was relieved the sarcoma had not metastasized.
She had four week-long rounds of chemotherapy and 35 radiation treatments. She received care from several different departments within Alegent Creighton Health, including ultrasounds, CAT scans, MRIs and lab work at Mercy and at Bergan Mercy Medical Center. Her surgery took place at Creighton University Medical Center. Her chemotherapy and radiation as well as her physical therapy and individual rehab were at Bergan.
Hofer called her recovery amazing. "I can't run races and I won't play soccer but I'm able to walk."
She rides a bike up to 15 miles a day and does other exercises during the week.
Because she's doing well, the follow up scans are now every six months, instead of every three months. She said cancer patients sometimes call the stress that goes with follow ups "scan-xiety."
She used to worry the entire month before a scan but she's improved to where she will only think about it the day of the scan.
Despite encouraging scans, Hofer became disheartened when she realized very little progress has been made in sarcoma research and treatment in the last 20 years. "It's only one percent of all cancers diagnosed in adults in the United States but sarcoma is high in metastasis and in reoccurrence. Something needs to be done. No one I know has even heard of sarcoma."
She joined the Community Sarcoma GIST (gastrointestinal stromal tumor) support group, which is co-sponsored by Alegent Creighton Health, and Team Sarcoma on Facebook. That's where she heard about long-distance runner Landon Cooper and www.miles2give.org. Cooper had a close friend who died from sarcoma and was appalled when he realized how understudied and under-funded sarcoma research was. He's running 3,000 miles across the United States, starting at the Golden Gate Bridge on Valentine's Day and ending up in Washington, D.C. on the Fourth of July.
He'll be running through Omaha on May 11th and through Council Bluffs on May 12th and will run in honor of Hofer as he comes through the metro. She's hoping to organize a rally. "I want to get the word out that they're coming through," Hofer said. "I hope people will visit their website and perhaps make a donation."
Her co-workers already have helped out a lot. They've held a fundraiser and contribute to jars that they call "Pennies for Penny." "They've been just amazing," she said, "I don't know how to give that back."
Hofer looked back on what she's been through: "I have a deep faith that I am exactly where I am meant to be in my life. I know plans have been made for me and I am not in control. I am at total peace. It is of utmost importance to me to help others and give back while I can."
You can help or learn more about sarcoma at www.miles2give.org or by contacting Hofer at firstname.lastname@example.org.