Biking toward a better future

Ask Patricia Dlouhy, RN, about the importance of the Cleveland Clinic fundraiser VeloSano, and she starts with a quip about how unlikely a participant she seems for an event based on distance bicycling.

“I am old, short and overweight, and that’s the bottom line,” she says. “I used to be an avid biker rider, but I’m not any more. The first time I rode in VeloSano, I did six miles, I didn’t ride the whole 10. But I just had my biked tweaked and hope to ride the whole way this year.”

Dlouhy, Nursing Professional Development Specialist, will be with plenty of nursing caregivers for the 2021 event, which takes place Sept. 11. Nurses typically show up in force for VeloSano, which has raised more than $24 million in seven years toward cancer research.

And Dlouhy just might well be joined by her son J.J. Robb as well. At age 31, Robb is all the reason she needs to overcome any obstacles to participation. Four years ago, he went from healthy and active to critically ill with what seemed like head-spinning speed. Since that time, she has been at his side – and Dlouhy’s Cleveland Clinic colleagues have been at hers – as Robb has worked his way back from the brink.

It was summer of 2017, and Dlouhy’s family noticed that Robb, then 27, was looking thin. “He always lost weight in summer, but he was losing even more than usual,” Dlouhy says. Out of the blue, he called to ask where he could find an urgent care clinic because he was in so much pain. Dlouhy was surprised, but told him where to go. A while later he called again, this time from the clinic.

“Mom, I need to get scans, where should I go?” Dlouhy told him she could help him get an appointment when she got off work. “No,” he said. “I need to go now.”

So Dlouhy sent him to Cleveland Clinic Lutheran Hospital and met him there. “He looked different to me,” Dlouhy says. “He looked like dead man walking. He looked horrible.”

At the hospital, technicians scanned his chest, abdomen and pelvis, then he went home with Dlouhy.

“We propped him up on the couch because his chest hurt so much that he couldn’t use his arms to support himself,” she says. Soon, the phone rang. The urgent care doctor had received the results of the scans. “You have cancer everywhere,” she told Robb. “You need to get to Fairview Hospital. They’re expecting you.”

Robb had tumors throughout his lungs and on his spleen. Doctors at Fairview Hospital first suspected lung cancer, then lymphoma, but pulmonologist Basem Haddad, M.D., wasn’t so sure.

“He spent 10 or 15 minutes walking around the room, thinking,” Dlouhy says. “He kept saying, ‘I have never seen a lung scan so bad. This doesn’t make sense.’ Finally he said, ‘You’re young and you’re healthy, you should have testicular cancer. I’m going to check you.’”

Robb was quickly diagnosed with metastatic testicular cancer and oncologist Hamed Daw, M.D., started chemotherapy almost immediately with the goal of reducing his most acute symptoms, and it succeeded in doing that. He also had several blood clots in both lungs. “They started chemo around 7 p.m. By 11 that night, my son was yelling at the Cleveland Cavaliers.”

Four months and many chemo infusions and surgeries later, Robb was well enough to return to his job at BJ’s Wholesale Club and to his indoor soccer league, but on the first day back on the field he got hit in the chest by a soccer ball. “He went to pick it up and his right arm fell,” Dlouhy says. “He tried again and couldn’t do it. He came home and I said, ‘For real, dude? You’re getting hurt when you’re just back to work?’”

It wasn’t that simple. Within days, his arm had grown worse. A family doctor suspected he had injured his rotator cuff and advised rest and anti-inflammatories. Robb took another week off work and started reporting that now his leg, too, felt strange.

When the symptoms persisted, and Robb couldn’t control either his right arm or leg, he returned to Fairview Hospital, where physicians found a 5-centimeter brain tumor.

He was discharged with a plan for setting up Gamma Knife® stereotactic radiosurgery at main campus. Before that could take place, Robb’s condition took another turn. He was watching TV with a family member when his face started to droop and his speech became slurred. CAT scans revealed bleeding in his brain. By 3 a.m., he was in surgery.

What Dlouhy recalls from that time are the acts of kindness from caregivers. “Dr. Lilyana Angelov was the neurosurgeon,” she says. “I had fallen asleep, and Dr. Angelov came in and told us she had de-bulked the tumor. My friend and colleague Karen Law brought me a cup of coffee and a toothbrush, which was just exactly what I needed. Later that day, Dr. Timothy Gilligan came and just sat with me in the room for a while and asked, ‘How are you?’ He was such a calming, wonderful influence.”

Kindness flourished elsewhere, too. During the months that her son had been ill, Dlouhy was determined to be present as much as possible to care for him. When she ran through all of her paid time off, coworkers helped out. Her boss donated a week of her own PTO; friends donated days as well. In telling the story of Robb’s medical ordeal, Dlouhy stops often to mention the acts of grace from the medical community that helped her throughout the tough times.

Robb woke up from brain surgery unable to move his right side or to speak. He spent 10 days in rehabilitation, gradually gaining some of his lost mobility and speech. On January 4, 2018, the remaining tumor was treated through Gamma Knife surgery by Samuel Chao, M.D. Then came a new regimen of chemotherapy – more difficult rounds that led to Robb developing neutropenic fever and spending yet another week in the hospital.

By July of 2018, Robb was stable enough for Dlouhy to travel to Alaska with friends – a 60th birthday trip she had had to cancel the previous year when her son was first diagnosed.

“I went on my vacation, and J.J.’s girlfriend was with him. I talked to him five minutes before I got on the ship. He said, ‘I’m fine. Have fun.’ I was at sea for 24 hours, with no cell service, and then we got into port and my phone was blowing up. He had developed new seizures and lost his speech and mobility on his right side.”

From the hospital, Robb told his mom not to come home. She completed the trip, and Robb continued on his path to stability. Not long afterward, she attended her first national conference on testicular cancer.

About 9,470 new cases are diagnosed each year, according to the American Cancer Society. The average age at diagnosis is 15-33. Dlouhy has delved more into testicular cancer activism and jokes that she is now the “creepy older lady” who reminds young men to be on the lookout for symptoms of the disease. In addition to VeloSano, she participates in fundraising events for Head for the Cure, a national non-profit organization dedicated to brain cancer awareness.

While Robb continues to live with the effects of the cancer, he is able to take college classes in business. He uses voice-to-text software to help him with written communication. He has yearly scans of his chest, abdomen and pelvis, and brain scans every four months. Botox injections decrease involuntary movements of his limbs. He continues with physical and occupational therapy. A speech therapist is helping him strategize solutions for problems with memory that resulted from the tumor. Dlouhy’s friend and colleague Steven Booth, RN, has offered to rig a ride-along bike that will allow Robb to safely participate in VeloSano.

“Finding a cure is my biggest wish and where better than at the Cleveland Clinic?” she says. “Cleveland Clinic saved my son’s life. We have such fabulous researchers, physicians and caregivers. I tell people that this was not the life I envisioned for my son, but this is the life he has – and he is a warrior.”