Independent Mesothelioma Survivor Making Plans for Her Next Road Trip
- Stories from Survivors
- Dec. 12, 2012
Kathleen A. already has the bus trip brochures sitting on the living room coffee table, awaiting only her next CT scan in December before making the final decision on where she goes next.
She still has a lot of road miles to travel.
Kathleen, 68, is a pleural mesothelioma survivor from southern Wisconsin with an inspiring streak of independence, still itching to go places in America where she’s never been, eager to meet new people along the way.
“I’m not ready for the grass to start growing between my toes just yet,” said Kathleen, whose last name is being withheld over privacy concerns. “I’m ready to get back on the bus again.”
She is approaching the two-year mark since her pleurectomy/decortication surgery and chemotherapy that has held her mesothelioma cancer in check. Knowing her pace has slowed, she’s still determined to keep the wheels moving.
Not long after her last round of chemotherapy, Kathleen left her home for a week on a bus tour with a musical theme that made stops in St. Louis and Branson, Miss., and Nashville and Memphis, Tenn. Her previous Southern bus trip, shortly after doctors drained the fluid from her lungs that led to the original diagnosis, went to New Orleans, where she danced at a jazz festival.
She made the trips without a companion, happy to make new friends along the way. The kids are grown and the husband is gone, leaving her to come and go as she pleases.
“I hope this doesn’t sound wrong, but a lot of people are busy. I can’t wait for anyone else to go with me. If I did, I wouldn’t get to go anywhere,” she said matter-of-factly. “I like to make my own decisions. And I always meet new people. It’s fun.”
Assuming the CT scan in December goes well — and she is praying every day it will — she is considering the Western National Parks, the South Carolina/Georgia area or the Florida Keys.
“I haven’t been to Texas yet, either,” she said. “Traveling is something I still like to do. This (mesothelioma) hasn’t stopped me yet. I just can’t move as quickly anymore. I get tired easily. You won’t see me on the treadmill, anymore. I still get places, but I get there slower than I used to.”
Paving Her Own Way
Kathleen has been making her health care decisions in much the same fashion. Although she has a loving family that has helped her through the process, she is the one who insisted on a second opinion. She was the one who decided on her course of treatment. She welcomed advice, and cherishes the help from her family and friends, but she clearly follows her own path.
“She still thinks she can do anything,” said her son, Rob. “She does things that I wish she would have someone do for her. She doesn’t belong on a 10-foot ladder cleaning her cathedral ceilings. It’s a sense of adventure, which is why she enjoys those bus trips.”
She has kept a careful journal — dates, times and places — of doctor visits, consultations, treatment options and side effects. She insists on having someone else with her during all doctor visits, taking notes, making sure she understands what has been said.
“At my age, the mind wanders. You don’t always hear what the doctor says. Another two ears always are better,” she said. “I have a neighbor with problems and she goes by herself to the doctor, and I don’t think she hears half of the things they are telling her. I wish she’d let me go with her.”
When she was first diagnosed, Kathleen was told surgery was not an option, that chemotherapy and radiation were her only choices. Fortunately, she looked elsewhere, and found the Carbone Cancer Center at the University of Wisconsin. Surgery was done by Dr. Tracey Weigel, who has since left for Westchester Medical Center.
“If I had stayed where I was first diagnosed, I probably wouldn’t be living right now,” she said. “That’s something I tell people all the time. Don’t just take what the doctors first tell you and accept it. That’s wrong. Get other opinions.”
Kathleen’s other piece of advice is prayer. She believes it has worked for her, and that it’s why she already has survived longer than first expected with this type of cancer.
“You don’t want to offend anyone by bringing up God, but He keeps me going every day. I believe in prayer. I don’t know how anyone can get through cancer if they don’t have God in their lives. I think that’s big,” she said. “I talk to Him in my home. I talk to Him walking into the doctor’s office, into my scans. I walk in there saying, `Okay, God, let’s do this.’ And He’s with me. I know that.”
Asbestos Exposure from Several Sources
What she still doesn’t know is exactly where the asbestos exposure was that led to the mesothelioma cancer. It could have been her father, a chemist who once worked for the DuPont Company, who brought it home. He died from mesothelioma more than 30 years ago. It could have been from her husband, who was in the Navy and working on a ship when they were married. Or it could have been from the older home where she lived in Kenosha, Wis., where the hot water pipes were wrapped in frayed, asbestos insulation.
The tie with her father has peaked her interest in genetic therapy, which is being advanced in Philadelphia at the Abramson Cancer Center. She is intrigued by the clinical trials there involving gene therapy, which could lead to another one of her road trips.
“Many of my friends didn’t know what I had. I had to spell mesothelioma for them, and explain it,” she said. “And they didn’t like hearing me say, `There is no cure for it.’ I didn’t like hearing that, either.”
Although Kathleen is feeling good now, her post-surgery period was not without problems. Not long after she went home from the hospital, she swelled up badly because a lung was leaking fluid, and she had to be tethered to a digital machine with a tote bag for weeks. Still, it didn’t keep her home very long.
“I had my issues, but I was determined to get well, to get back to my life. It’s nice to have family and friends do things for you, but as soon as I possibly could, I was up and walking, even if it was just to the mailbox at the end of the cul-de-sac,” she said. “I spent four days on the couch watching television, but that was all I could stand.”
She still wears the pin —”I’m a Patient with No Patience” — given to her by her son at one of the early treatment sessions. They both smile about it now, knowing how well it fits her.
“I just keep going back to the Bible verse: `I can do all things through Him who strengthens me,'” she said. “I know now I can do this.”
Tim Povtak is an award-winning writer with more than 30 years of reporting national and international news. His specialty is interviewing top mesothelioma specialists and researchers, reporting the latest news at mesothelioma cancer centers and talking with survivors and caregivers.