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Categorized | Featured, News

No shrinking violet

 

Violet Rohrer will do what it takes to fight peritoneal cancer, including clinical trials of promising new drugs.

Violet Rohrer lives a life full of optimism, despite, she says, knowing that her body is “full of cancer.” (Chris Clark | Spectrum Health Beat)

By Bev Snyder | Spectrum Health Beat (Reprinted by permission)

The symptoms snuck up on Violet Rohrer.

It started in late fall 2013. Exhaustion. Lack of appetite. Swelling. It took gargantuan effort just to do simple things, like plan a party.

Anytime she ate, she’d feel full after just a few bites. Her belly soon began to swell, too—the buttons on her blouse wouldn’t even fasten over her stomach. Her family had wondered how that could happen in the span of just a few weeks.

Violet, 72, figured there would be surgery, a few months of treatment and recovery before she could return to her healthy self. (Chris Clark | Spectrum Health Beat)

Her husband, meanwhile, didn’t know what to make of her complaints about a perpetually sore stomach.

This continued to unfold during tax season in April 2014. Rohrer, of Pierson, worked for her husband, John, a certified public accountant, which meant she had little time to visit a doctor.

Or so she thought.

When the exhaustion finally overwhelmed her, she knew she had no choice but to call her primary care physician and request a same-day appointment.

By the end of that day, after a barrage of lab tests and ultrasounds, she had her answer.

As she describes it, her body had become “full of cancer.”

I know what I want in life

Ever the optimist, Rohrer, now 72, figured there would be surgery followed by a few months of treatment and recovery before she could return to her healthy self.

But reality hit after meeting with her surgeon, who initially suspected ovarian cancer but soon diagnosed the disease as stage 4 peritoneal cancer. It’s a rare form of cancer, developing in the thin layer of tissue that lines the abdomen. It looks and acts like ovarian cancer and it’s treated in a similar way.

Like other people living with cancer, Rohrer has endured her share of ups and downs.

Violet was diagnosed with stage 4 peritoneal cancer, a rare type that develops in the tissue lining of the abdomen. Surgeons could not remove all of the cancer. (Chris Clark | Spectrum Health Beat)

Doctors could only remove so much of the cancer through surgery. To this day, she still has thousands of tiny, rice-sized tumors remaining on her peritoneum.

After surgery she returned home to recover, but within a week her pulse began to drop and her blood pressure plummeted. She had to be rushed back to the hospital.

“My husband said he knew it was a grave situation when they acted like they couldn’t save me,” Rohrer said.

She entered palliative care, leaning on family, friends and her pastor for emotional support. Believing she was near death, she had a friend help her make some necessary preparations for a funeral.

“I pretty much know what I want in life,” she said. “I want it my way.”

And yet, even as she expected death, she still fought. She spent time in and out of palliative care before undergoing a variety chemotherapy treatments, which took a heavy toll on her body.

She suspected she didn’t have much longer to live, but she still found reasons to hope. She remembers having a vision while in the hospital—that of a figure, obscured by cloud, assuring her everything would be OK.

Never quit

As a young woman, Rohrer taught school in Japan. She completed a master’s program at the University of Michigan. She’s board president of the Chandler Woods Academy.

To this day, she remains a force to be reckoned with.

During a recent interview with a Spectrum Health Beat, Rohrer took a call from her doctor’s office about scheduling a biopsy.

When the caller offered a timeline that didn’t suit her, Rohrer stressed the urgency. She asked about the doctor’s schedule. She questioned the availability of the treatment room. She wheedled her way into an earlier appointment.

She’s not someone who takes “no” for an answer.

She has never missed an appointment, even if during a visit she has to lie down instead of sitting in a chair.

Along with her regimen of traditional medicine and treatments, Rohrer sought advice from a homeopath who recommended a strict diet and nutritional supplements.

Rohrer now drinks “green juice” daily. She wants to learn to brew her own kombucha, and she primarily follows a vegetarian diet—no sugar, no grains, no dairy.

Although she knows that lifestyle changes won’t cure her cancer, she firmly believes they have improved her quality of life.

Meanwhile, she’s tackling her travel bucket list.

She took a three-week trip with her husband to see Mt. Rushmore and the Grand Tetons, enjoying time with good friends along the way. During one leg of the trip—in Rapid City, South Dakota—she fell ill and had to be hospitalized.

New Mexico is next on the list.

A glimmer of hope

Recently, Rohrer’s doctor told her that her cancer has progressed. It’s hard to see any good news in that.

But in fact, this cloud has a silver lining.

Rohrer is enrolled in clinical research trials for new cancer-fighting drugs through START-Midwest, located in Spectrum Health Cancer Center at Lemmen-Holton Cancer Pavilion.

For patients with advanced cancer, the START program provides access to new medicines that use targeted therapy, immunotherapy and antibody therapy.

With five clinical research sites around the world, START has been instrumental in testing and getting FDA approval for new cancer drugs. Former President Jimmy Carter was treated with one of those START-tested drugs, Keytruda, for melanoma that had spread to his liver and brain. That treatment left him cancer free, according to his doctors.

“When you run out of options that are effective, that’s when clinical trials come in,” said Nehal Lakhani, MD, PhD, of START-Midwest. “Typically patients that are candidates for our trials have gone through at least one or two standard chemotherapy regimens.”

For Rohrer, the first trial drug was an infusion treatment intended to help her immune system fight cancer.

Tests showed that her tumors continued to grow. Within hours of getting these results, Dr. Lakhani began exploring a new treatment option.

“Dr. Lakhani is incredible,” Rohrer said. “He is the most responsive doctor I could ever imagine … and he’s not ready to give up on me.”

Despite the setback, Rohrer refuses to let cancer stop her from doing what she loves—like weeding and pruning the Japanese corner of her expansive garden.

“She is determined,” Dr. Lakhani said. “She is a fighter.”

The combination of traditional treatments, healthy nutritional choices and the clinical trials are reflective of Rohrer’s “never quit” approach to life.

“I’m grateful that God gave me a brain that I have learned how to use,” Rohrer said. “There is so much you can do to support yourself.”

If you have been diagnosed with cancer and would like a consultation or second opinion, call 1.855.SHCANCER (855.742.2623). Learn more about the Spectrum Health Cancer Center locations near you.

This article first appeared on Spectrum Health Beat at  http://healthbeat.spectrumhealth.org/no-shrinking-violet-peritoneal-cancer-start-research-trial/. Reprinted by permission.

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