Podcast Producer/Host Tess in the Media
Mayo Clinic
St. Mary’s Hospital, 1216 2nd St SW, Rochester, MN 48189
Mayo Clinic, 200 First Street SW, Rochester, MN 55905
Cancer patient faces harrowing decision
Joe Michaud-Scorza/Jscorza@postbulletin.com
Tess Pfohl, of Cannon Falls, strengthens her legs and back with Mayo Clinic student physical therapist Jim Hartman in Rochester. Pfohl has decided to have a section of her spine removed to combat bone cancer.
Related Stories
Related: 'Terrified,' woman prepares for life as a paraplegic
Related: Mayo Clinic doctor creates network of support for cancer patients
Posted: Saturday, May 31, 2014 7:15 am | Updated: 11:09 am, Sat May 31, 2014.
Brett Boese, bboese@postbulletin.com
Bill Pfohl sat in a hospital room at Mayo Clinic and wept as his daughter detailed her ongoing battle with a rare form of cancer that's forced her to choose between two horrible treatment options.
After months of back pain, Tess Pfohl, 25, was diagnosed in April with chondroblastic osteosarcoma. It's an affliction that strikes roughly 600 people per year in the United States, typically in the arms or legs of those very young or very old. While doctors don't believe the cancerous tumor has spread, it's created complications by being wrapped around Tess's spine.
Only a handful of medical facilities around the world are equipped to treat such cases. Mayo Clinic surgeon Dr. Michael Yaszemski said Rochester's world-class hospital has performed just 160 similar surgeries in the last 18 years.
"The bottom crashed," Bill said after an hour of listening to his daughter's tale in emotional silence. "Just hearing how it had inundated her spine and wrapped it up was really scary. None of the choices seemed real good."
Mayo Clinic doctors presented Tess, a two-time state champ with the Bomber Dance Team, with two treatment options:
• Cut away a portion of the tumor to decompress her spinal cord. The procedure may allow a return to normalcy, but it creates an unknown life expectancy because cutting the tumor may cause the cancer to spread. It is, typically, preferred by older patients, and survival can last mere months or many years.
• Surgically sever her spinal spinal cord in order to remove the entire tumor. She would become a paraplegic, living the rest of her life in a wheelchair. Data is inconclusive due to the rarity of the procedure — about 80 percent survive at least five years in typical bouts with cancerous sarcoma — but her odds of long-term survival are believed to be much higher than with the decompression procedure.
When doctors made the diagnosis, they initially recommended the first option and planned the surgery for the next morning. But they reversed course hours before surgery was to commence, largely because Tess had expressed such a strong interest in the latter option.
"She has been remarkably astute about this and became knowledgeable very rapidly beyond what most people understand," Yaszemski said. "I thought that this is a very mature young person who — in the face of incredibly difficult options, none of which is ideal — has decided to optimize her chances of survival."
Tess started her second round of chemotherapy this week. Her complex three-day surgery, which will involve a team of eight specialists led by Yaszemski, is tentatively planned for July.
"I don't want to lose my legs, but I'd much rather be able to hug my family and use my arms, and not live in total fear that this cancer is going to come take my life whenever it wants to," Tess said.
Friends and family have rallied around her after hearing about the decision.
Last weekend, many attended a party hosted by her older sister, Lynnea Pfohl, in Winona. Around $10,000 has already been donated to fund renovations of the home, where Tess plans to live for at least a year after surgery. The renovations are expected to cost $34,000, to say nothing of medical bills.
Perhaps best of all, Knute Nelson Hospice Care, in Alexandria, Minn., has told her that her social worker job will still be there for her when — not if, Tess emphasized — she's able to return. She described it as her dream job.
"When you go through this as a parent, you go through the stages of grief," Bill said. "I think I'm almost getting to the point where I'm at acceptance — and I think Tess's strength has really helped us with that."
"It's not that she hasn't had hard days or hard moments, but she's been unflinching in her resolve to tackle this head on," Lynnea said.
The physical changes are already obvious — she's shaved her head and is well-practiced in a wheelchair, for example — but all her friends, family and medical staff want to talk about is Tess' attitude. That could prove vital with the challenges that lie ahead.
"I've already accepted this," Tess said. "I hate that this tumor is really rare and it sucks … but I'm hopeful that everything is going to be fine.
"It sounds corny, but you have to just love. What good does it do to get all boiled up? That's not the type of life I'm going to live."
--
'Terrified,' woman prepares for life as a paraplegic
Joe Michaud-Scorza/ Jscorza@postbulletin.com
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.
Posted: Friday, May 30, 2014 8:05 pm | Updated: 8:14 am, Mon Jun 2, 2014.
Brett Boese, bboese@postbulletin.com
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."
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's 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.
"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
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's 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."
--
Mayo Clinic doctor creates network of support for cancer patients
Dr. Michael Yaszmenski
Joe Michaud-Scorza/ Jscorza@postbulletin.com
Mayo Clinic surgeon Dr. Michael Yaszmenski talks about working on Tess Pfohl's rare case of chondroblastic osteosarcoma.
Posted: Saturday, May 31, 2014 7:00 am | Updated: 8:14 am, Mon Jun 2, 2014.
Brett Boese, bboese@postbulletin.com
In the bewildering moments after Tess Pfohl was diagnosed with a rare, life-threatening cancer, Mayo Clinic's Dr. Michael Yaszemski offered perhaps the only balm possible.
He connected the 25-year-old Cannon Falls native with one of his former patients, Elizabeth Gauthier, in hopes of expanding a fraternity of survivors who have leaned upon each other for strength and advice.
The renowned surgeon said he's performed just 160 intricate spinal procedures in the last 18 years, which typically results in patients losing a limb or becoming unable to walk. While many have died — the exact number was not made available — 28-year-old Gauthier is a survivor of six years who is thriving in her unofficial role as an ambassador. The Chicago woman had been mentored herself by Janis Olson, a Canadian woman who made headlines across the globe in 2007 when Yaszemski's Mayo Clinic team essentially cut Olson in half and put her back together in a groundbreaking surgery.
Gauthier said she spoke with Pfohl and her family as they sat in Yaszemski's office, offering insight on the path ahead and answering questions. The two have stayed in touch over the past month through email and Facebook, and Gauthier hopes to visit Minnesota after Pfohl's summer surgery to show her what's still possible.
The procedure will sever her spinal cord so that surgeons can remove a deadly tumor now wrapped around it. Yaszemski has informed Pfohl that the surgery will make her paraplegic, confining her to a wheelchair for the rest of her life.
Facing a daunting future like that, Gauthier has been trying to show Pfohl that she'll still be able to do things. Despite losing a leg in Yaszemski's life-saving surgery in 2008, Gauthier uses a wheelchair to compete in triathlons and says she's working toward a masters degree in disabilities and human development.
"It's just kind of creating a network and talking to people, but it's tough to tell people how horrific it can be and then try to be reassuring as well," Gauthier said.
"I'm learning a lot about the human disability experience. You're not alone. There's people that are there for you. It's a shared experience, but it's becoming a force. Together we can do this."
Bill Pfohl, Tess's father, has been highly complimentary of Yaszemski. In addition to connecting them with Gauthier, he highlighted one particular night when the surgeon stayed until 10 p.m. looking at pictures of his daughter.
"That's just being a human being," Yaszemski said, deflecting such praise. "It's just caring about what you've got and willing to be around when you're needed.
"Tess is a remarkably mature young woman who is making the most difficult decision in an incredibly important and objective manner. For all of us in the care team, it's a privilege to to take care of her."
However, the doctor dreams of a day when such procedures may no longer be necessary.
A Mayo Clinic research team, which includes Yaszemski, is currently attempting to develop a remedy that can kill such tumors, reducing the need for debilitating surgery. Lab tests have been successful, but researchers have yet to develop a formula that won't also kill the patient, Yaszemski said.
Long-term, Yaszemski hopes to develop "smart particles, much like a Trojan horse" that will search out and destroy tumors after simply being injected through an IV.
While the medical possibilities clearly energized the doctor, those solutions remain tantalizingly out of reach for Pfohl. Funding issues for the National Institutes of Health — its research budget fell by more than $1 billion in 2014 and NIH's purchasing power is down 25% since 2004 due to inflation, according to a recent USA Today story — could also impact future patients.
"It's not going to happen this year or next year," Yaszemski said. "This is a marathon, not a sprint, but we'll keep working on it."
https://www.mayoclinic.org/biographies/rose-peter-s-m-d/bio-20055181
Tess’s incredible orthopedic surgeon who worked alongside Dr. Yaszemski.
Peter S. Rose, M.D.
Orthopedic Surgeon
