Six months left to live.
That is what doctors told Kenneth and Mary Lou Culbertson in October, when they diagnosed Kenny with stage four liver cancer that had metastasized in his bones and lungs.
Kenny’s health took a turn for the worst in August of this year.
“I woke up in the middle of night with severe stomach cramps,” Kenny said. Mary Lou rushed him from their home in a little country neighborhood north of Foyil to the emergency room in Claremore.
The doctor there sent him home with antibiotics for an intestinal virus.
The medication didn’t help, and the pain didn’t stop.
“His eyes were yellow and his skin was orange,” Mary Lou said.
The cause of the pain turned out to be Hepatitis C, a blood born virus that Kenny contracted when he got a hand-drawn tattoo with an unsterilized needle almost 40 years ago.
Untreated for years, Hep. C destroyed his liver and lead to cancer.
“We knew that something wasn’t right, so we were prepared for it,” Kenny said of the diagnosis.
“It still was a shock,” Mary Lou said, “because it came on so fast.”
“They tried chemo, but it was too late, it just didn’t work,” Kenny said.
They are no longer fighting the disease. They hired a hospice nurse to help manage the pain, but they are far from giving up.
The Culbertsons know from experience that six months doesn’t always mean six months. Kenny’s aunt was given six months and survived two months. Mary Lou’s dad was given six months and lasted two years.
But they are also confronting the fact that this Christmas could be their last one together.
“I think it is harder on her than it is me,” Kenny said.
Despite wearing a brave face, Mary Lou agreed.
“I’ll be fine though,” she said, solemnly. “Taking care of him is the main thing right now.”
“I’ve got the kind of attitude that it is what it is, and we’ll deal with it as it comes,” Kenny said.
Instead of counting down or giving up, Kenny wakes up each day thinking about what he and Mary Lou will do today to enjoy the day they’ve got.
For now, while Kenny can still walk freely with well-managed pain, their goal is to tackle as much of Kenny’s bucket list as possible.
“I’ve lived in Oklahoma for 26 years and there are museums in Tulsa I’ve never been to, there is a World War II submarine in Muskogee I want to go see, and stuff in Oklahoma City I want to see,” Kenny said, like the Land Run sculptures and Bricktown. “Just little day trips mostly.”
A few weeks ago they made it see the Gathering Place in Tulsa.
Friday they went to see the Trans Siberian Orchestra Christmas Concert.
And soon, they hope to make a two and a half hour drive to see Kenny’s family in Misourri, before travel starts to wear him out.
Kenny views every good day as an opportunity to get out of the house and go have an experience.
Christmas lights, car races, chili cook-offs.
“Mainly, it’s just spending time with you,” he said, with a loving look towards Mary Lou.
Kenny and Mary Lou have been together for 19 years, and married for almost five.
It turns out Kenny’s sunny outlook on life stems from their wedding day, and the weeks that followed.
“I had a massive heart attack,” Kenny said.
“Eighteen days after we got married,” Mary Lou added.
Paramedics strapped Kenny into a helicopter and rushed him from Claremore to St. Francis Hospital. During the flight, paramedics took down information about his next of kin and viability as an organ donor.
After the emergency surgery, doctors were surprised at how well Kenny held on.
That moment changed Kenny’s whole life.
“I’ve had another four years. I could have died that night,” Kenny said. “I look at every day differently. It’s a blessing … I woke up today, that’s a good thing, let’s go from there.”
The couple shared extreme gratitude for the doctors, nurses and hospice care professionals of St. Francis and the good neighbors and friends who check up on them regularly.
“He’s always been a hard worker, kind-hearted, loving, generous,” May Lou said. “He’d give you the shirt off his back.”
“They’re down to earth kind people who aren’t used to asking for help,” said neighbor Lyndi Hudson, who has been the recipient of their kindness many times. “That’s why I knew someone had to reach out for them.”
Lyndi made it her mission to make sure as many people as possible knew about the donation link, where all funds will help Kenny fulfill his bucket list and cover end-of-life costs.
The Facebook fundraiser is titled Mary’s Medical Fundraiser for Kenny.
Since receiving his diagnosis, Kenny has two main pieces of advice to share with the world – get tested for Hep. C and keep your loved ones close.
“I’ve been telling everybody, people need to get tested for Hepatitis C,” Kenny said.
Hep. C can be dormant for up to 50 years, but when it erupts, it happens quickly and violently. There are treatments that work, if the disease is caught in time.
“Talk to somebody. Don’t shut people out,” Kenny said. “I can be depressed and down, but I take a trip to Missouri to see my family, and the next thing I know, I’m feeling great.”
Mary Lou said that outside of family, there are plenty of worthwhile support groups for patients and caregivers going through terminal illnesses.
“And if you know somebody that is sick, go see them,” Mary Lou said.
Kenny’s legacy, “Get out and do what you can while you can. Enjoy every day.”