Corewell Health nurse Sue Lokker never imagined she’d be on the receiving end of a call to prepare for a stem cell transplant.
A Corewell Health interventional radiology nurse, she frequently calls patients who are scheduled for needle biopsies, line placements for chemotherapy, stem cell collection and eventually transplant.
She had rarely missed a day of work during her 35 years as a nurse until August 2021, when she underwent a hysterectomy for endometrial cancer.
The cancer was microscopic and found very early.
All seemed well until a couple of days before a routine post-operative appointment.
But that morning, she noticed a big lump in her neck. At first, she thought perhaps she’d pulled a muscle.
Her doctor ordered an ultrasound. She’d also had a breast MRI that week, part of her routine care because of a family history of breast cancer.
They found that Sue’s chest was full of enlarged lymph nodes.
“A needle biopsy revealed Hodgkins lymphoma and that was a huge blow,” said Sue. “ Just like that, I went from caregiver to patient.”
An unexpected relapse
Typically, Hodgkins lymphoma responds well to chemotherapy, with a cure rate of 80 to 90%. Sue felt optimistic going into treatment, which involved six cycles of chemotherapy every other week.
“I actually did really well,” she said. “I experienced some fatigue but no major side effects and worked the whole time.”
As an interventional radiology nurse, Sue interacted with several patients with Hodgkins lymphoma.
She shares that one of the tough things when she was working was opening up a patient’s chart to see that their lymphoma came back.
A month or two after her last infusion, a PET scan revealed an enlarged lymph node. A follow-up scan revealed spots on her chest and in her armpit.
Sue, 57, returned to interventional radiology, this time as a patient. After a needle biopsy failed to produce an adequate specimen, she underwent a surgical procedure.
Her Hodgkins lymphoma was back.
The magic number
That’s when she met with Rupin Shah, M.D., a Corewell Health physician who specializes in internal medicine and hematology.
The next line of defense for patients with a relapse of Hodgkins lymphoma is an autologous stem cell transplant. In this type of transplant, stem cells are taken from the patient as opposed to a donor.
“It can cure a significant number of patients,” Dr. Shah said.
Sue never imagined she’d be in that position.
The bone and marrow transplant team (BMT) determined that Sue would be an excellent candidate for the transplant. She had a support system and was in good physical shape. She would need all those resources for the path ahead.
She would undergo three rounds of intense, inpatient chemotherapy.
“You use second-line chemotherapy to try to put the disease back into remission before transplant,” Dr. Shah said. “In Sue’s case it was a complete response and that gives us an indication that she’ll do well and hopefully stays in remission.”
The next phase of treatment involved collecting her stem cells. The magic number: 3 million.
To prepare, Sue had to give herself daily injections to stimulate cell production.
Each morning, her mother, Donna Grooters, would drive her from her Hudsonville home to the Adult Blood & Marrow Transplant Clinic to find out whether she had hit her goal.
“The bone and marrow transplant team is so wonderful. I think they were as disappointed as I was every day when it didn’t happen,” Sue said.
When it did happen, the team sent her texts with balloons and party hats. The transplant was on.
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.
An emotional day
Transplant day finally arrived on Dec. 1, 2022 which also marked the 1,000th cellular Infusion for the team.
Sue shared that on one hand, the one to two-hour process felt anti-climactic.
“On the other hand, it was so emotional because the process to get there is just so taxing” she said.
The days after the transplant would also be taxing, when the side effects of the intense chemo entered high gear. She experienced nausea, no appetite, rashes, mouth sores and fatigue.
Her doctor and nurses gave her three jobs: drink, eat and move.
“I also worked hard to have a positive attitude,” Sue said. “You think it sounds easy, but it’s not when you don’t have an appetite and don’t feel good.”
But Sue followed their instructions to a T, logging 70 kilometers walking the hallway of the BMT unit.
When the hospital food didn’t appeal, her husband, Dan, brought up treats from the cafeteria.
“The team, the staff on that floor, was just amazing,” she said. “Its unlike anything I have ever seen.”
Throughout her treatment, Sue leaned on family, friends, her church community and her faith.
Next to her favorite chair is a box jam-packed with cards and letters from friends and family, along with a plaque that reads: In all things give thanks.
That sense of gratitude has buoyed Sue throughout her cancer journey.
“One night, in the midst of treatment, I couldn’t sleep because I was just thinking of all the blessings I have,” she said.
A familiar wake-up call
Sue returned home after just 20 days in the hospital. During her stay, the nightly soundscape consisted mostly of the ding of call lights.
She remembers her first morning at home very vividly because she had a big smile on her face.
“I’m lying in bed in the morning and heard my neighbors' donkeys braying and I said, I’m home! It’s the donkeys, not the call lights!” Sue said.
Post-transplant, Sue was initially really tired but has gradually regained her strength. She enjoys walking daily, feeding the donkeys and even venturing out to lunch or dinner with friends.
“Sue has done exceedingly 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 spend time on their usual routines: grocery shopping, lunch outings and thrift shopping, instead of trips to Corewell Health.
Sue looks forward to traveling again, starting in April with a trip to Utah where she hopes to cross hiking through a slot canyon off her bucket list. She’s also looking forward to camping and gardening.
Sue was able to return to work.
“My experience makes you realize that everybody’s got a story. It makes you extend more grace to other people because you don’t know what difficulty they’re going through,” Sue said.