Desiree Thoemke's health deteriorated rapidly. Determining the cause was wrapped up in a complex and uncommon case.
CROSBY—The first sign of trouble was ordinary, easy to dismiss and little indication of the life-threatening peril that lay ahead.
Autumn weather had already deepened into the bleak late fall of November 2017 when Desiree Thoemke had the first indication something wasn't right. Her feet began itching. A working mother of two, she was on her feet all the time. Thoemke was looking forward to moving up in responsibility at her job at Costco. A single mom living in Brainerd, she had a son in elementary school and an infant daughter. She said a visit to the doctor got her a foot ointment. But instead of being the conclusion, it appeared to be just the start of a rapid health change—eventually leading to paralysis and a word no one wants to hear in a diagnosis.
But that was still months away. First came the numbness.
"My feet began feeling like they were asleep. You know that feeling that your foot's asleep and then you press on it and that agonizing pressure—that's what I felt all the time," Thoemke said, remembering the early indications as November fell aside, giving way to winter.
Thoemke said her feet began to feel as though she was on pins and needles with stabbing pain, which went on for two months.
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Benefit for Thoemke is Nov. 10 at the American Legion in Brainerd
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Then she noticed a change in her hands. Numbness. Pain. Her pinkie finger began curling inward, Thoemke said. She said she thought a few days off from her job at Costco over the New Year would provide a respite. Instead it became her unraveling.
On Jan. 3, she said she woke to find her legs so weak she could barely stand.
"Finally, I got on my feet but I knew something was wrong," she said. The situation repeated itself the following day. More medical tests followed, she said, revealing diminished sensation all over her body. "At that point I was really having trouble walking."
She began falling, once getting stuck for a time outside in the snow—unnoticed—in late January.
Thoemke was referred to the Mayo Clinic and she said doctors there started over from scratch to look at what was causing her rapid physical decline. By this time, Thoemke described experiencing excruciating muscle spasms.
"I couldn't move my hands or my legs," Thoemke said, her voice welling with emotion.
At Mayo in early February, a PET scan with radioactive dye was used to create a detailed computerized image to detect cancerous cells, which may not be found by other imaging options such as a CT scan or MRI.
That was time Thoemke said she heard the words she was dealing with cancer—breast cancer. By all accounts, Thoemke's case was complex and presented a difficult diagnosis. Biopsies from a tumor in her left breast confirmed the cancer— a breast cancer typically seen in women age 60 and older. Surgery removed a 4.5-centimeter lump and 12 of 28 lymph nodes on her left side, she said. With her paralysis and pain, Thoemke said her diagnosis came with an uncommon added burden of a paraneoplastic syndrome diagnosis.
"Paraneoplastic syndromes of the nervous system are a group of uncommon disorders that develop in some people who have cancer," the Mayo Clinic noted. "Paraneoplastic syndromes of the nervous system occur when cancer-fighting agents of the immune system also attack parts of the brain, spinal cord, peripheral nerves or muscle."
"... Sometimes the injury to the nervous system is reversible with therapy directed toward the cancer and the immune system. However, these diseases can also rapidly result in severe damage to the nervous system that can't be reversed."
Symptoms, which can develop rapidly over days or weeks and begin before cancer is diagnosed, include difficulty walking or maintaining balance, slurred speech or stuttering, loss of fine motor skills, seizures, memory loss and vision problems, among a host of others.
The Mayo Clinic reported treatment of the underlying cancer and other interventions may prevent further damage and improve symptoms for a better quality of life.
To treat it, Thoemke said they took the antibodies out of her body and replaced them with new ones.
"That made me really sick and that sucked, but it did help me a little bit. I improved a little bit," she said, adding she also underwent five months of chemotherapy. The long dark hair flowing past her waist became a thing of the past. Treatments were hard on her body.
"They were really tiring. They made me really sick all the time. I lost a bunch of weight. I couldn't eat anything. It was a lose, lose situation for me."
At one point, Thoemke said she was on a feeding tube after developing a blood infection and high fever, getting airlifted to Abbott Northwestern Hospital in Minneapolis.
"I thought I was going to die," she said.
At Mayo, Thoemke said one of the hardest things was being separated from her children.
"We celebrated my daughter's first birthday at Mayo—that was rough."
This spring, she was transferred to the Cuyuna Regional Medical Center Care Center in Crosby to be closer to family. Having her mom take care of her kids—Devlin, now 9 and her 18-month-old daughter Daveena —was a huge relief off her shoulders in her recovery.
"They are a big part on why I have to keep going, why I fight so hard and have to keep going every day."
She continued with chemotherapy treatments and therapy, which helped her sit up and get in a wheelchair, control pain and muscle spasms. Because of her radiation treatments at this time, she doesn't have physical therapy beyond range of motion with staff, as well as language, speech and mouth exercises she does on her own.
"I pray a lot and I have my family," she said, along with close friends who regularly come to see her. "I'm thankful, you know, for life. I'm thankful I can use my hands a little bit. ... I'm a fighter. You know, I don't really have a choice having two young kids.
"After radiation is complete, therapy will hopefully pick back up and I can get better—100 percent."
Known for her sunshine disposition and ever present smile, Thoemke's nickname became Rayee—for ray of sunshine. She loved playing board games, jigsaw puzzles, Scrabble and painting on canvas and ceramics.
Now she spends a lot of time watching TV—game shows like "America Says" and a TVLand lineup, including "Golden Girls," as well as "American Pickers" and "Storage Wars." Opposite her hospital bed in Crosby is a wall festooned with well-wishes, colorful art and an appropriately massive card from co-workers at Costco—people she described as an unexpected second family. She said one of the positives from this journey has been meeting really cool people along the way.
She adjusted her head next to the cushioned hospital call button positioned near her chin. With limited use of her hands, she uses her face to activate the call button.
"It's hard laying in the bed and my kids come and I can't ...." her voice drifted away as tears welled in her eyes. "It's hard. I have to be strong. Everyone expects me to be so strong. ... I try to stay positive and keep a smile on my face."
Dinner, silent auction benefit set Nov. 10
A benefit for Desiree Thoemke, to relieve financial stress for her and her mother Jill, who is now the caregiver for Desiree's children, is 4:30-8 p.m. Saturday, Nov. 10, at the American Legion in Brainerd.
One hundred percent of the proceeds of the dinner and silent auction and raffles will go to Thoemke. Organizers are also accepting silent auction and raffle items.
Cost is $10 a plate for those 13 and older, $5 a plate for those age 4-12 and free for those age 3 and younger. Choice is lobster ravioli, salad and breadstick, catered by Olive Garden, or pulled pork sandwich with all the fixings and chips.
For more information, contact Danielle Thoemke by calling or texting 218-851-5527 or email to email@example.com.