A Mesothelioma Caregiver Reflects on Hospice and Support

Cissie Larson shares with us that her husband, Ron, began losing weight and experiencing fatigue. “Ron was just different, he was quiet and started losing weight. And I mean a lot of weight,” she says.

She tells us she initially thought Ron’s sudden weight loss was grief-related. She explains, “I wondered why. And in my mind I thought he’s probably just grieving over the loss of our dog.”

Then Ron began experiencing pain. It was significant enough pain that he had a hard time going to sleep. 

“He always went to sleep at night on his right side,” Cissie says. “He later found he couldn’t do that anymore because it hurt. He couldn’t figure out what that was and that’s what got him to go to the doctor the first time.”

His doctor prescribed a muscle relaxer for the pain, but it didn’t help. That’s when Ron went back to his doctor. 

“That’s when they did a lung X-ray,” Cissie recounts. “They called us at 6 o’clock that night and that’s when we knew something was not good. They told us there was something that didn’t look right and that he needed to get a CT scan. It turns out that his right lung was the one filled with cancer.”

On January 7, 2021, Cissie’s husband received a diagnosis of stage 3 pleural mesothelioma. From then on, she never left Ron’s side. 

Ron’s Treatments and Surgery

The same month he received his diagnosis, Ron, who was 80 years old at the time, underwent a surgical procedure called pleurodesis. It treats and prevents fluid buildup or pleural effusions, which are a common complication of pleural mesothelioma. 

Chemotherapy, radiation and immunotherapy were all therapies tried as part of Ron’s treatment plan. He specifically took Opdivo and Yervoy. Cissie, who became his mesothelioma caregiver, says chemo side effects took a toll. 

By December 2022, she says, “He was having memory issues and having almost hallucinations. I believe it was the chemo. They talk about chemo brain. He would answer questions that I hadn’t asked him.” 

Cissie’s Role as Ron’s Caregiver

Cissie tells us she encouraged Ron to participate in some social functions. She says the occasional outing lifted his spirits. It was her goal to do everything she could to make sure Ron was as comfortable as possible. 

Eventually, he couldn’t drive himself because his energy levels had dropped dramatically. So Cissie drove Ron to all of his chemo appointments in downtown Dallas. 

“He got to a point where he didn’t want to eat,” she recounts. “So I would make him his favorite foods.”

When his health declined, she says, “I would make sure he was sitting up. I would get his children on the phone and make sure he could at least hear them if he couldn’t talk to them.” 

As Cissie explains, being the primary caregiver for her husband was not only difficult – she had to accept what she could control and what she couldn’t. They made the decision for Ron to be in home hospice care.

“There just wasn’t a lot I could do at one point,” Cissie says. “That is a horrible feeling for the surviving person.”

Finding Comfort From Family and a Mesothelioma Support Group

While caregiving for Ron, Cissie ensured she had a support system to help her through the tough times. This was important for her overall health. Long-term stress can cause mesothelioma caregiver burnout. 

Cissie joined a mesothelioma support group that meets once a month virtually or via phone. The Mesothelioma Center organizes the group and licensed mental health counselor Dana Nolan moderates the discussions. Cissie says talking to survivors and other mesothelioma caregivers in the group was very helpful. 

“I wished Ron would have been able to join those calls,” she says. “It was amazing to me how many different presentations of mesothelioma that there are. It was good.” 

Along with fellow support group participants, Cissie also received help from family and neighbors. She appreciates how sweet and helpful her neighbors were. And she leaned on her family as much as she could. 

“I have an older brother who was here almost all of the time,” Cissie recalls. “Also Ron’s son Scott lives about 25 minutes away from here and he was fabulous. He was so wonderful.” 

Cissie tells us all of Ron’s children ensured he felt surrounded with love in his final days. She shares, “They spent the night with him a couple of times and then they had to leave. They knew they weren’t going to see him again and that was so hard for them, it was heartbreaking.” 

Ron passed away on February 12, 2023. Cissie says then, “It was a different world. I had to live in a world where you just do the best you can, give the love you can, give the care you can and just know that you’ve done your best. And that’s all you can do. The big man upstairs has more plans than we do.” 

Working With a Patient Advocate

In addition to participating in the support group, Cissie says registered nurse and board-certified Patient Advocate Karen Selby was an invaluable resource. She says Karen offered support, information and advice. 

“She is an angel,” Cissie shares. “There’s no other way to describe her. I guarantee you that without Karen to help me understand what was going on and prepare me for the next step – I don’t know if I would have made it without losing my mind.” 

Karen reassured her that she could reach out anytime. Cissie says having Karen just being available to talk whenever she needed some guidance was a lifesaver. 

“She would text me to be sure that everything was okay and she said, ‘Text me back anytime,’” Cissie tells us. “She said, ‘I will get back to you as soon as I possibly can’ and she did every time!”

“Karen was like my friend,” she adds. “She was like a therapist friend who knows so much about everything. She can explain things so well and wanted me to know what was ahead.”

Cissie says she has advice for anyone going through a similar experience. “I would tell them to call the Patient Advocates at The Mesothelioma Center first. I can’t think of one bad thing about the whole experience.”

Then, Cissie says, she would tell them to go to church. She recommends finding a group of friends at church. 

“I wasn’t active at church during all of this, but about a week after Ron passed away, I went back to church,” Cissie notes. “I cannot even begin to explain how uplifting everybody was and what a wonderful experience that’s been for me.”