Julie Lykins on caregiving, grace, and creating memories

In all her research, Julie Lykins, 43, found that reading stories from other kidney cancer patients was one of the most comforting ways to understand this new experience she and her husband Chris, 44, had been thrust into.

But where were all the stories of people like Chris who were diagnosed with papillary renal cell carcinoma (RCC)?

“I know it’s more rare,” said Julie, who is a cardiology nurse in Kentucky. “Maybe if I talk about it that would bring other people forward to talk about it.”

While papillary RCC is the second most common type of kidney cancer, it only makes up about 15% of all cases, compared to clear cell RCC – the most common type that up to 75% of all diagnosed cases are.

Chris was diagnosed with stage 2 papillary RCC after a surgery to remove his entire left kidney in February 2020, right before the Covid-19 pandemic shut many things down. He had been experiencing occasional stomach pain and an ultrasound revealed an abnormality on the left kidney.

The first 6-month scan showed no cancer spread. But the next scan didn’t get scheduled until August 2021 – a year later – and this time Julie and Chris were uneasy.

“We had ‘off’ feelings about it but I was trying to stay positive for him,” Julie said.

“Waiting for the results is the hardest part of scans. Unfortunately, it all comes to the patient via ‘MyChart’. We got the results and I know what all these words mean and they were not good words. It was the first day in my entire career that I cried tears for myself at work. I’d gone to talk to my manager to tell her I needed to take some time and if my manager hadn’t come around her desk to comfort me, I would have hit the floor.”

The scan showed the cancer had metastasized to five spots on Chris’s left side.

“Chris was telling me he was fine, but I wasn’t fine and I needed to be with him,” Julie said. “We were having our bathroom and kitchen remodeled and were living in the basement. We were just standing in the basement crying and hugging.”

Unfortunately, when the hospital called to discuss the scan results, they mistakenly reviewed the old 6-month results and reported no spread. Angry, Julie initiated a series of painful follow-up calls and meetings to understand Chris’s current situation and determine next steps.

The two eventually got a second opinion at the Cleveland Clinic in Ohio. The specialist there explained Chris now had stage 4 papillary RCC and recommended a combination of immunotherapy and oral tyrosine kinase inhibitor (TKI) as treatment – a nivolumab/cabozantinib regimen.

Transitioning into a caregiving role for her husband means Julie, quick to tackle problems in an active manner, has changed how she supports her husband, whose fatigue and other side effects makes him less able to cut the grass, work on cars, or do activities that he likes with her and their three children.

“I try to find my inner Zen and be more patient with him,” Julie said. “I grant him more grace with resting and doing things he wants to do like play video games. It can annoy me but now I think, it could be worse. The fact that he’s sitting up and playing video games? Go for it!”

Having her own outlets to process what the family is going through is important for Julie too.

“I walk a lot, I work out, I hang out with friends and drink wine,” she said. “I told Chris I want to talk to a therapist because I’m angry and sometimes I take it out on him. Chris is always sorry and I say stop apologizing for something you can’t control.”

Going on short-term disability at work helped reduce Chris’s stress and fatigue as they continue to manage side effects. Julie said reaching out to others online, including Susan Hill from the KCA’s Patient & Caregiver Advisory Council, was very helpful.

“None of the research done is for papillary, it’s for clear cell, so how do we beat this? How do we know something will work?” she said. “One of the best things I could have heard from others was that ‘scan-xiety’ is real and you can’t change the outcome. Five years is a number in the back of our heads every day, though no doctor has talked to us about an estimated prognosis. Chis is not ready to hear it from a doctor and I’m not either.”

Instead, she said the family finds a lot of comfort in time together and are planning a Disney cruise later this year. She and Chris, who were married in a park 10 years ago, are also renewing their vows in May.

“I still want to create memories,” she said. “We’re going to have a big party together with the people we go through life with.”