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In August 2021, Sue Lokker underwent a hysterectomy for endometrial cancer. “It was discovered very early on,” she said. “It was microscopic.” (Taylor Ballek | Corewell Health Beat)
Everything seemed fine until a few days before a routine post-op appointment. But that morning, “I noticed a big lump in my neck,” Sue said. (Taylor Ballek | Corewell Health Beat)
“They found my chest was full of enlarged lymph nodes,” Sue said. A needle biopsy revealed Hodgkin’s lymphoma. “It was a blow,” she said. Throughout her treatment, Sue relied on her family, friends, church community and faith. (Taylor Ballek | Corewell Health Beat)
A month or two after his last infusion, a PET scan revealed an enlarged lymph node. A follow-up scan revealed spots on his chest and in his armpit, his Hodgkin’s lymphoma had returned. (Taylor Ballek | Corewell Health Beat)
Next to her favorite chair is a box filled with cards and letters from friends and family, and a plaque that reads, “In all things give thanks.” (Taylor Ballek | Corewell Health Beat)
This feeling of gratitude has sustained Sue throughout her cancer journey. One night, in the midst of treatment, she could not sleep. “And all I could think about was how many blessings I had,” she said. (Taylor Ballek | Corewell Health Beat)
Transplant day finally arrived on December 1, 2022. This also marked the team’s 1,000th cell infusion. On the one hand, the one- to two-hour process felt “anti-climactic,” Sue said. “On the other hand, it was so emotional, because the process of getting there is so grueling.” (Taylor Ballek | Corewell Health Beat)
Sue returned home after just 20 days in hospital. In the hospital, noise at night consists mainly of the ringing of call lights. His neighbors have goats and donkeys that bray in the morning. “I’m laying in my bed in the morning and I heard these donkeys braying and I said, ‘I’m home! she says. (Taylor Ballek | Corewell Health Beat)
Every morning, her mother, Donna Grooters, drove her to chemotherapy, doctor’s appointments, and the bone and marrow transplant clinic at Corewell. She was always by his side. (Taylor Ballek | Corewell Health Beat)
“It makes you realize how much everyone has a story,” Sue said. “It gives you more grace that you extend to others because you don’t know what difficulties they are going through.” (Taylor Ballek | Corewell Health Beat)
Sue Lokker has helped hundreds of patients faced with a cancer diagnosis.
An interventional radiology nurse at Corewell Health, she frequently calls patients who need needle biopsies or line placements for chemotherapy or stem cell collection and possibly transplant.
She had rarely missed a day of work in her 35 years as a nurse until August 2021 when she underwent a hysterectomy for endometrial cancer.
“It was discovered very early on,” she said. “It was microscopic.”
Everything seemed fine until a few days before a routine post-op appointment.
But that morning, “I noticed a big lump in my neck,” Sue said. At first she thought she might have pulled a muscle.
Her doctor ordered an ultrasound. She also had a breast MRI that week, as part of her routine care due to a family history of breast cancer.
“They found my chest was full of enlarged lymph nodes,” Sue said.
Needle biopsy revealed Hodgkin’s lymphoma. “It was a blow,” she said.
Just like that, Sue went from caregiver to patient.
An unexpected relapse
Typically, Hodgkin’s lymphoma responds well to chemotherapy, with an 80-90% cure rate. Sue felt optimistic at the start of treatment, which involved six cycles of chemotherapy every two weeks.
“I actually did pretty well,” she said, noting that she felt tired but no major side effects. “I worked all the time.”
As an interventional radiology nurse, Sue has interacted with several patients with Hodgkin’s Lymphoma.
“It was one of the hardest things when I was working,” she said. “You would open a patient’s chart and see, ‘Oh, their lymphoma came back.'”
A month or two after his last infusion, a PET scan revealed an enlarged lymph node. A follow-up scan revealed spots on his chest and under his armpit.
Sue, 57, has returned to interventional radiology, this time as a patient. After a needle biopsy failed to produce an adequate sample, she underwent surgery.
His Hodgkin’s lymphoma was back.
The magic number
It was then that she met Rupin Shah, MDphysician in the Blood and Bone Marrow Transplant Program at Corewell Health.
The next line of defense for patients with relapsed Hodgkin’s lymphoma is an autologous stem cell transplant. In an autologous transplant, the stem cells are taken from the patient rather than a donor.
“It can cure a significant number of patients,” Dr. Shah said.
Dr. Shah had never met Sue before, but consults frequently in interventional radiology to have lines placed before stem cell transplants.
“She never imagined she would be in this position,” he said.
The BMT team determined that Sue would be an excellent candidate – she had a support system and was physically fit. She would need all those resources for the way ahead.
She would undergo three cycles of intense chemotherapy in hospital.
“You’re using second-line chemotherapy to try to get the disease back into remission before the transplant,” Dr. Shah said. “In Sue’s case, this was a complete response and it gives us an indication that she will be fine and will hopefully remain in remission.”
The next phase of treatment was to collect his stem cells. The magic number: 3 million.
To prepare, Sue had to give herself daily injections to stimulate cell production.
Every morning, her mother, Donna Grooters, would drive her from her Hudsonville home to Corewell Health’s bone and marrow transplant clinic to find out if she had achieved her goal.
“The (bone and marrow transplant) team is so wonderful,” said Sue. “I think they were as disappointed as I was every day when it didn’t happen.”
When it did, the team texted her with balloons and party hats. The transplant was in progress.
Ten days later, Sue was admitted for six days of high-intensity chemotherapy aimed at eradicating the lymphoma. It also wipes out the bone marrow and causes side effects including hair loss, mouth sores and nausea.
A day full of emotions
Transplant day finally arrived – December 1, 2022 – which also marked the team’s 1,000th cell infusion.
On the one hand, the one- to two-hour process felt “anti-climactic,” Sue said.
“On the other hand, it was so emotional, because the process of getting there is so grueling,” she said.
The days following the transplant would also be trying, when the side effects of the intense chemo kicked into high gear: nausea, lack of appetite, skin rashes, mouth sores and fatigue.
His doctor and nurses gave him three tasks: drink, eat and move.
“And have a positive attitude,” Sue said. “You think it sounds easy, but it’s not when you have no appetite and you don’t feel well.”
But Sue followed their instructions to the end, walking 70 kilometers down the corridor of the BMT unit.
When the food from the hospital didn’t rain, her husband, Dan, brought in candy from the cafeteria.
“The team, the staff on this floor, was just amazing,” she said. “It’s unlike anything I’ve ever seen.”
Throughout her treatment, Sue relied on her family, friends, church community and faith.
“It helped me a lot,” she said. “I know there is a plan. And God was in every detail.
Next to her favorite chair is a box filled with cards and letters from friends and family, and a plaque that reads, “In all things give thanks.”
This feeling of gratitude has sustained Sue throughout her cancer journey.
One night, in the midst of treatment, she could not sleep.
“And all I could think about was how many blessings I had,” she said.
“People ask, ‘How can you be so positive?'” Sue said. “I couldn’t think of a single negative thought. All I could think of was all the blessings of my family and friends.
A familiar awakening
Sue returned home after just 20 days in hospital, short of the average stay of a month.
She smiled remembering the first morning.
In the hospital, the nocturnal soundscape consists mainly of the ringing of call lights.
His neighbors have goats and donkeys that bray in the morning.
“I’m laying in my bed in the morning and I heard these donkeys braying and I said, ‘I’m home! she says. “It’s the donkeys, not the call lights!”
“At first you are really tired,” she said of the first few weeks after the transplant. She gradually regained her strength, walking daily, feeding the donkeys, even venturing out to have lunch or dinner with friends.
Sue did “extremely well”, Dr Shah said. Her PET scans show that she remains in complete remission.
The next phase of treatment involves immunotherapy infusions, given every three weeks for a year.
As she continues her recovery, she and her mother are now spending time on their usual routines: grocery shopping, going out for lunch and second-hand shopping, instead of going to Corewell Health.
Sue is looking forward to traveling again, starting in April with a trip to Utah where she hopes to hike through a slot canyon on her to-do list. She also looks forward to camping and gardening.
On March 2, Sue returned to work. Her personal experience, she said, “will change my practice going forward.”
“It also makes you realize how much everyone has a story,” she said. “It gives you more grace that you extend to others because you don’t know what difficulties they are going through.”
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