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'Terrified' woman prepares for life as a paraplegic

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Tess Pfohl talks about the first symptoms of a rare form of cancer on her that is attached to her spine on Tuesday at St. Mary's Hospital in Rochester.
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Lying at the bottom of her apartment stairs in Alexandria, Minn., Tess Pfohl's tears expressed a mixture of pain, frustration and fear.

Quite simply, April 29 was rock bottom — figuratively and literally — after months of debilitating back pain.

Mere weeks into her dream job as a social worker, the 25-year-old Cannon Falls native had finally been diagnosed with a rare cancerous tumor that was wrapped around her spine. Minutes before departure for Mayo Clinic in Rochester to meet with specialists, her back had locked up and Tess was unable to prevent a long, painful tumble down the stairs into a gravel parking lot.

The sobs began quickly as her mother rushed to her side.

"My mom was so sweet," Tess recalled, a whimsical smile on her face as she spoke from a wheelchair in Mayo Clinic Hospital-Saint Marys. "She just laid down next to me in the parking lot and stayed there for awhile. I was terrified."

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Prior back-related incidents included being unable to stand up at the grocery store in mid-March and blacking out in a swimming pool on April 16 while doing physical therapy. The tumor was applying so much pressure on Pfohl's spinal cord that her gait had changed, she didn't get more than four hours sleep on any April night and, upon being admitted to Mayo, a catheter extracted more than two liters of urine that she'd been unable to pass.

Pfohl first began experiencing regular back pain in December 2013. She tried stretching, medication, chiropractors and physical therapy before doctors finally identified the tumor through an MRI; X-rays had failed to discover a block that measured roughly 6 centimeters on each side.

Doctors believe they caught the rare cancer early enough to prevent its spread, but the situation remains life-threatening. Presented with two unsavory options, Pfohl opted for surgery to remove the whole tumor that will also make her a paraplegic.

"We saw Tess degrade from being a healthy, vibrant woman to being like an 80-year-old woman who needed a walker in a matter of days," said Bill Pfohl, her father.

"I look back and gosh, life can be shitty when you're thrown all these curves, but … you take what you can get because you're never guaranteed anything. Because of Tess' strength and resiliency, it's made it a lot easier to handle," he said.

A sister's love

While Tess was forced to quickly make a decision that will alter her life, her older sister, Lynnea Pfohl, has done likewise.

Hours after hearing of the diagnosis, Lynnea offered her a place to stay for what could be years, and her modest Winona home already includes a husband and two young children, with a third on the way.

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"My sister's incredible," Tess said. "She found out about this and within a day she had her whole master bedroom packed and ready for construction."

The master bedroom will be transformed to accommodate a paraplegic, along with a bathroom and kitchen that will be similarly renovated. A ramp will be added to the house for a private entrance, doorways will be widened and a great room will be added to allow for some private living space, among other things.

That construction is expected to cost around $34,000, of which roughly a third has already been donated .

Lynnea expects a seamless transition, in large part because Tess was a live-in nanny for part of 2013 and is already comfortable "in our family dynamic," she said. Plus, their younger brother attends Winona State University and would be just a few minutes away, making Winona a natural home-away-from-home for what could be a few years.

While Tess plans to eventually return to her job as a social worker at Knute Nelson Hospice Care in Alexandria, it remains unclear how feasible that will be. Perspective is needed when considering that uncertainty, Lynnea said.

"I just thought about everything I've got in the last five years that she won't be able to have," said Lynnea, referring to her growing family. "That's my whole life now. She had just started her career … and now she has a whole host of new things that most of us never have to worry about.

"I've spent a lot of time thinking about her crummy luck and how she's handled it … but our immediate concern now is to get this modest addition done so she can be comfortable while she recovers. We can worry about the rest later," she said.

An 'inspirational' transition

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Tess readily admits that life without use of her legs will be challenging.

Her family loves outdoor adventures, making annual treks to the Boundary Waters Canoe Area and other camping destinations. While those trips may need to be tweaked, Pfohl has begun researching all-terrain wheelchairs that could allow them to continue. They cost thousands of dollars, but she already plans to make it her first big post-surgery purchase.

Some of her other favorite activities include horseback riding, swimming, playing tennis and dancing. She was actually a member of the Bomber Dance Team that won high-kick state titles in 2006 and 2007.

Carrie Pommier, her former dance coach, says Tess' willingness to work set her apart as a dancer, and should continue to serve her well in the years ahead.

"I don't know many 25-year-olds who could make this decision and be so inspirational about it," Pommier said. "I think it would be a lot easier for someone to fall back into themselves with a lot of sorrow and grieving, hoping people would feel sorry for them. That's not Tess. She's pretty amazing."

Tess credits her faith for powering that determination, and that's become an even greater part of her life since being diagnosed with cancer.

Tess, who was a counselor at a Christian camp in Colorado recently, said that she used to feel her affinity with God was "annoying," in an altruistic way. Not anymore.

"I've always felt very held by God and His peace," she said. "It's kind of annoying because sometimes I don't want (that feeling). There's so many people out there who needed it more than me. I'm like, 'You can back up and give it to someone else' … but now I'm so thankful for that feeling. I want it all now."

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