First you walk ... then you run
Cindy Schofield was scared as she approached the starting line.
She had five kilometers to run and she wasn’t sure she could do it.
Once, it would have been easy.
Schofield could always count on her body to perform. She grew up in Lakeland playing soccer. She could run fast, kick strong.
Her athletic ability won her a scholarship and made her a soccer star at Florida State University. It helped her set college scoring records that remain unbroken. It guided her decision to move to Tampa to coach soccer for Tampa Preparatory School and competitive youth soccer teams.
But all that was before.
Now, 28-year-old Schofield was scared.
***
It began on a Sunday afternoon in January 2008. Schofield had been at the soccer fields all weekend, coaching and leading personal training sessions. She started to feel dizzy and confused.
“My head was out to here,” she said. “I felt like I had been hit by a bus.”
She called her mom in Lakeland, who told her she would drive over and take her to a doctor.
But Schofield decided the pain was too bad. Her head felt like it was going to explode. She drove herself to a walk-in clinic, went in, waited, saw the doctor.
Cindy Schofield didn’t know whether she would ever walk again after a sudden illness nearly killed her.
Her mom met her in the parking lot and asked her what the doctor had said.
“I don’t remember,” Schofield told her.
Her mom drove her to a local hospital. Her father and her brother soon joined her. Doctors took her to get an MRI. Later, she wouldn’t remember any of that, either.
Nor would she remember the MRI results. A doctor came out and delivered the news to her parents.
“She has a cancerous brain tumor,” he told them. “She’ll be dead in two years.”
***
Her parents, devastated, began making phone calls. They were determined to get their daughter the best treatment possible. They took her to H. Lee Moffitt Cancer Center & Research Institute.
There, Schofield underwent surgery. Doctors were prepared to do a biopsy and to remove whatever part of the tumor they could.
They didn’t find what they expected.
This part, Schofield does remember: she was with her father when his cell phone rang with the biopsy results.
He started to cry. It wasn’t cancer.
Amidst his tears of relief, her father didn’t realize it was something just as deadly.
***
Schofield kept getting worse. Her vision kept blurring. The pain in her head was horrible. She could no longer move the left side of her body. She couldn’t even walk.
Moffitt doctors believed her problem was related to multiple sclerosis. They suggested that Schofield see Dr. Stanley Krolczyk, USF assistant professor of neurology and director of the USF Multiple Sclerosis Center. Schofield was impressed when he came in to see her on his day off.
But Dr. Krolczyk wasn’t happy with what he saw. On a disability scale of 1 to 10, Schofield scored an 8.5 – and 10 was dead.
“She was going downhill very rapidly,” he said. “There was active inflammation in her whole brain, white blood cells attacking the brain, denuding the neurons of myelin and destroying the brain tissue.”
Myelin is the protective sheath that covers nerve fibers, like insulation around a wire. When the body’s immune system attacks myelin, it can strip nerves bare, creating scar tissue and leaving neurons unable to communicate.
Schofield had been attacked by an extremely rare form of multiple sclerosis, called tumefactive MS. While the severity and course of MS is different for every patient, most of them become more disabled gradually, sometimes following a pattern of remission and relapse. In contrast, tumefactive MS can hit somebody like a thunderbolt out of a blue sky.
“There’s no way to predict which individuals develop this,” Dr. Krolczyk said. “It looks like an aggressive brain tumor on an MRI.”
Nor is the prognosis any better. Most patients die within a few months.
Dr. Stanley Krolczyk, USF assistant professor of neurology and director of the USF Multiple Sclerosis Center, said the inflammation in Schofield’s brain was so bad it could be mistaken on an MRI for a brain tumor.
Schofield’s situation seemed bleak. About 460,000 people in the U.S. now have MS. But Dr. Krolczyk has found only a few dozen published cases that seem as severe as hers.
With such a rare condition, there were no guidelines – no protocol to guide Dr. Krolczyk on the best way to save Schofield. He had to design his own treatment.
Schofield’s best chance, Dr. Krolczyk decided, was aggressive action to try to reduce the swelling and inflammation in her brain before it created any more damage. He decided on a combination of three drugs to attack the inflammation in every way possible.
Schofield received steroids to reduce the inflammation in her brain. Plasma exchange to remove antibodies and inflammatory mediators from her blood. And a special chemotherapy drug to suppress the T-cells that could attack her brain again.
Schofield was hospitalized for weeks, but she would remember little of her time there. Only one decision stayed with her: sometime in her hospital bed, unable to walk, she vowed this would not be her future.
Schofield wound up in the hospital, unable to move the left side of her body.
She would recover, she promised herself. She would walk again. And then she would run. Still in the hospital, she decided she would run a 5K.
***
It was that vow to herself that Schofield thought of as she approached the starting line of her 5K – the Susan G. Komen Race for the Cure, held in St. Petersburg in October.
She was still scared. Her balance wasn’t good. What if she stumbled? A stubbed toe might send her sprawling.
But she stepped over the starting line and began to run.
***
When she left the hospital, Schofield came home to a different world. Her parents left Lakeland and moved in with her. They rented a hospital bed for the living room. The once strong athlete was in a wheelchair. Not only could she not walk, she couldn’t even lift her left arm.
Her life seemed to have turned into a shuttle between doctor’s visits and physical therapy sessions. At first, there were days when Schofield didn’t even want to get out of bed.
And then she would tell herself: No. She was not going back to the hospital. She forced herself to do more.
Her parents and Dr. Krolczyk encouraged her as well. He and Lise Casady, a USF nurse practitioner who works with Dr. Krolczyk, were in constant contact.
“They pushed me when I needed to be pushed,” Schofield said.
She set small goals. She had to work just to gain enough hand strength to squish a stress ball. To be able to lift her arm long enough to put her hair in a ponytail.
Schofield was determined to run again.
She still felt mentally fuzzy as well. She had to work to remember daily routines, dates and even the trauma that had struck her life. She joked about the movie “50 First Dates,” in which Drew Barrymore suffers a brain injury and can’t remember anything for longer than a day. She tried to write things down to help her memory.
Schofield had been through hard times before. In her sophomore year of college, her fiancé was killed in a skydiving accident. Shattered, Schofield nearly left FSU. It was her close ties to the members of her soccer team that pulled her through.
“That was my family,” she said. “I don’t know what I would have done without them.”
Now, she was relying on athletics to help her again.
***
As she ran, her mind began to slip backwards. Everything started to replay through her mind. Her brush with death, her fall into disability, and all she had been through just trying to walk.
She struggled not to cry. She didn’t even think about the ground that she was covering, or the speed she was traveling. She just relived the struggle, stride after stride.
***
Schofield moved from a wheelchair to a walker, then to a heavy cane. Next to a lighter one.
She gradually began reclaiming her life. She returned to her passion, coaching soccer, limping along the sidelines with her cane.
One tournament weekend, she got tired of the cane. It was in the way. She decided on the spot that she could balance without it. So she put it down.
The next day, she walked into her physical therapist’s office on her own.
“I told her I graduated,” Schofield laughed.
Still, Schofield wasn’t sure she could balance well enough to run. In the spring, she began to run on a treadmill – slowly, about 4.5 mph – so that she could hold on to the arm rails.
Gradually she increased her speed and distance. Dr. Krolczyk was impressed with her determination.
“She’s a very hard worker,” he said. “It’s great to have patients like that.”
Schofield was learning as well about taking care of herself, being careful not to get overheated and giving herself more time to rest after exercise or long spells of coaching in the Florida heat. She also remained on a medicine to modify her immune system.
Although MS patients are known for going through periods of relapse, Schofield and Dr. Krolczyk are cautiously optimistic.
“So far she only appears to get better,” Dr. Krolczyk said. “We hope this was one unbelieveably bad case that will not recur.”
Despite her progress, Schofield was still scared to run outside. Her balance remained a little shaky; she couldn’t balance while standing only on her left foot. She was still afraid of falling.
Four days before the race, she went to the Upper Tampa Bay Trail with something to prove. She turned right, where the trees shade the path and the trail runs true north, and began to run.
***
Step by step, the distance fell away. Thirty-two minutes after she began to run, Cindy Schofield, a woman left battered by multiple sclerosis, crossed the finish line.
Schofield runs along a sunny section of the Upper Tampa Bay Trail.
Her mother cheered as she saw her daughter cross the line and then she began to spread the news. She got out the cell phone, calling everyone: Cindy did it. She finished. She really did it.
But Schofield saw the clock coming over the finish line.
“That’s it?” she asked herself.
She had been so scared. She hadn’t run for speed – just to finish. Now, she thought, she could have run faster if she had pushed harder.
She felt a rush of her old competitive spirit. In November, she decided, she would do another 5K. Then a half-marathon, maybe in the spring. And this time, she’d run faster.
Then she knew.
She was back.
Runner 3443, Cindy Schofield
***
— Story by Lisa Greene, USF Health Communications; Trail photos by Eric Younghans, USF Health Communications; Other photos courtesy of Cindy Schofield