When Joe Toonen began experiencing pain and numbness in his left arm in the fall of 2021, his mind first went to heart troubles.
Not one to downplay symptoms, Joe made an appointment with his primary care physician. His doctor ordered a stress test and coronary calcium scan.
“My heart looked wonderful, which was great news,” Joe says.
Amidst the reassurance, though, a new concern arose. Joe had undergone a prior coronary calcium scan. When comparing the two, the new scan showed a growth near Joe’s lung. Doctors first thought the spot might be a fungus or pneumonia.
Joe was poised to take a trip with his wife, Ann, who had recently retired from teaching. The two planned to travel to Maine to celebrate. The couple got the all-clear for the trip, with a recheck for Joe scheduled upon their return.
A repeat scan of Joe’s lung showed the spot had remained. A visit to pulmonologist Dr. Scott Parrish followed, and then a biopsy. On Dec. 7, 2021, Joe received a diagnosis of stage 3 lung cancer.
“I don’t know if I heard the rest of what Dr. Parrish said that day,” Joe recalls. “The rest of 2021 was a whirlwind of activity.”
Surgery and Treatment
The day Joe received his diagnosis, he heard someone ringing the bell at the cancer center and inquired about what it meant. When he learned that the bell-ringing represents a symbolic rite of passage marking the end of a person’s cancer treatment, he made a vow. “I said, ‘I’m going to ring the bell someday.’”
As Joe absorbed his diagnosis, he first talked with his brother, Tim, who is an oncologist in Minnesota. Joe says it helped to have his brother participate in calls with Joe’s oncologist. As an expert listening ear and advocate, his brother could help Joe understand and evaluate the recommended course of action.
The treatment plan called for Joe to complete courses of chemotherapy and radiation in the hopes of shrinking the tumor prior to undergoing surgery to remove the lower lobe of his left lung. On Dec. 31, 2021, Joe began chemo and radiation.
A colleague of Joe’s brother specializes in surgery for lung cancer patients. That led Joe to choose to undergo surgery in Minnesota in April 2022. Joe completed his chemo and radiation, along with immunotherapy, through ThedaCare Cancer Care.
Outstanding Care
Joe, a semi-retired public accountant and Appleton resident, says his chemo and radiation treatments were tiring, but he tried to maintain a positive attitude throughout his experience.
“A lot of people were enduring worse than I was,” he says. “I tell friends, if you think you’re having a bad day, go to the cancer center. People are going through treatment, but they’re very positive. The little things that we worry about, we can get through it.”
Reflecting on his experience, Joe says he’s grateful for the care he received through ThedaCare Cancer Care. That extends to people at every level, from schedulers to phlebotomists to his nurse navigator and all the nurses.
“It’s got to be hard,” Joe says of the Cancer Care team. “To keep being upbeat, it takes a special person to do that.”
Linda, a phlebotomist who did Joe’s blood draws, always went above and beyond. The team uses green stickers to help identify what needs to be removed from patients’ ports. To help make people smile, Linda would add stickers for holidays, Joe recounts.
“I saw her recently and gave her a hug,” he says of Linda. “Sammy, who’s a scheduler, is awesome. Nicole, my navigation nurse, was a rock star.”
Supportive Services
Joe, a father of two adult children, is also thankful for the support of his wife, Ann, as well as for the care extended to her. During Joe’s treatment, the couple took advantage of palliative care through ThedaCare. This type of care helps patients and their loved ones cope with serious illness.
“It’s often harder on your significant others because they want to understand and empathize with you,” Joe says. “Palliative care was amazing in supporting us both throughout the journey.”
Daisy Boehm, a Nurse Practitioner with ThedaCare Cancer Care, says her team provides well-rounded care to each patient.
“We incorporate a multidisciplinary approach for lung cancers,” she says. “In most situations, it would involve a pulmonologist, a surgeon, the radiation oncologist and medical oncology. In some situations, we also incorporate some supportive services, such as palliative care.”
Busting Bias & Giving Back
Joe says his experience with lung cancer has proved eye-opening. A non-smoker, he had no family history of the disease. After his diagnosis, Joe did discover his home had high radon levels, leading him to install a mitigation system.
“Everybody asks, ‘Are you a smoker?’ That’s the first question they ask,” he says.
The question always gives him pause.
“There’s a stigma attached with lung cancer that isn’t really fair to people,” he says. “Nobody deserves lung cancer.”
As Joe has learned more about lung cancer, he’s discovered that bias has negatively impacted funding for research for the disease. His experience and learning about the disease have inspired him to advocate and raise money for cancer research. He’s also there as a listening ear for anyone who’s going through cancer.
“We need to pay forward our good fortune,” he says. “I am here today because of remarkable advancements in cancer care.”
‘Don’t Wait’
After completing his treatment, Joe fulfilled his promise to himself of ringing the bell. Today, he’s doing well and back to living an active lifestyle, including plenty of travel. Every six months, he sees Boehm through the survivorship program for follow-up care and monitoring that includes a CT scan and blood work.
“The survivorship program is a place in which I meet patients who have completed their cancer treatments and are under surveillance and have been potentially cured of their disease,” Boehm says.
Joe says he savors life’s joys more than ever. He’ll turn 60 in November, and he and his family recently celebrated his daughter’s marriage.
Reflecting on the past several years, Joe says he’s gained new perspective.
“You’re diagnosed with cancer, and it’s eye-opening. It shows you’re not invincible,” he says. “I’m not going to wait to do things. Live your life. Live it every day.”
As we mark Lung Cancer Awareness Month, Joe also shares a message with others.
“Don’t ignore symptoms,” he says. “If your body is telling you something, get it checked out.”
Boehm echoes Joe’s sentiments.
“Joe took initiative to evaluate a symptom that was new and unusual,” she says. “By not ignoring it and going in and seeking care, we were able to have a successful outcome. My biggest message to folks is to make sure that they aren’t ignoring unusual signs or symptoms that they’re experiencing, because the sooner we can get them in our doors, the better the outcomes will be.”
