When Barry Kausler was told he had a year to live, two if he was ‘lucky,’ he went to MCA for a second opinion — and found a second lease on life.
In early June 2015, Barry Kausler, a 53-year-old father of three and senior producer at Mediacom, went in for his first colonoscopy. It was a phone call with his sister Jill, a nurse on the oncology floor of a hospital in Little Rock, that convinced him to make the appointment after Barry had mentioned a few symptoms — constipation and insomnia —that he’d never experienced before. When the doctor, following the procedure, told Barry and his wife, Sheila, that something didn’t look quite right, they thought maybe polyps or something minor was the cause for concern. Instead, they received a call from University Hospital the following afternoon saying the problem was much more serious. It was during his first appointment with an oncologist the following Tuesday morning that Barry received his diagnosis: Stage 4 colon cancer. And it had metastasized to his liver.
“‘What does this mean?’” Barry recalls asking his doctor. “The doctor patted my knee lightly and said, ‘It means you have about a year — maybe two if you’re lucky.’”
Before getting too far into Barry’s story, there are a few important details to note: First, the doctor who delivered his initial diagnosis is now his former oncologist. Second, though this is very much a Survivor Story, Barry does still have cancer. Numerous surgeries, procedures and 50+ chemo treatments later, he’s still fighting the disease. And he has no intention of stopping any time soon.
‘It’s my job to treat you’
A self-proclaimed Missouri man through and through, Barry, a St. Louis native and the youngest of four children, moved to Columbia with his family the summer before starting fourth grade. He graduated from Hickman High School, attended the University of Missouri and began his career at KMIZ-TV. Although his career took him away from Columbia for some years — to St. Louis and Springfield, Missouri — he and Sheila returned to Columbia more than 22 years ago. And they’ve been here ever since.
Barry’s connection to the city is evident, and it’s played an integral role in his cancer journey. In fact, it was a friend from high school, Susan Hughes, who encouraged Barry to get a second opinion during his first oncology appointment. Susan is a former nurse who’s married to a radiologist, and she flew out from her home in Colorado Springs the Monday before Barry’s first meeting with the oncologist and went with him and Sheila to the appointment. As Barry faced the grim diagnosis, Susan had the wherewithal to ask questions about the plan of action and treatment, which led to her suggesting that Barry get a second opinion. The doctor agreed.
More community connections followed. Former neighbors of his parents recommended Barry see Dr. Joe Muscato at Missouri Cancer Associates. Barry, Sheila and Susan — who also attended Barry’s first appointment at MCA — then reached out to another high school classmate and fellow Hickman grad, Rhonda Henstorf, who happened to work in the MCA chemo center.
For Barry, that initial meeting with Dr. Muscato made all the difference. In what Dr. Muscato has since jokingly referred to as the appointment with Barry’s “three wives” (Sheila, Susan and Rhonda), they talked for more than an hour about the diagnosis and a plan of action. Throughout the meeting, Barry couldn’t help but wonder how this appointment could be so different from the one with his former oncologist.
“Rhonda just smiled and said, ‘Look, I’ve worked with this man for over 20 years,’” Barry says. “‘When he comes back, let’s just ask him.’”
So they did.
“Dr. Joe didn’t even have to think about his response,” Barry says. “‘Listen,’ he said. ‘You’re a relatively young man. I’ve seen all your X-rays. You have a healthy heart. You have healthy lungs. I’m not here to tell you how long you have left. It’s my job to treat you, to work with you and to try to make you better.’”
‘I am living’
Within the first few weeks after diagnosis, Barry had surgery to put a stent on his ureter, as well as another surgery to put a stent on his colon. During a visit to the bathroom only five days after the procedure, Barry noticed he had passed the stent. He was understandably concerned, but after a call to Rhonda, he learned it was actually a good sign.
“The fact that the stent [which had been put in to contain the tumors on his colon and ease with the blocking of his system] itself came out indicated that my first couple of chemo treatments had already shrunk the tumors enough to let it pass on through,” he says.
Since then Barry has undergone more than 50 chemo treatments. Friday afternoons are typically his chemo days, when he’s usually at MCA for two to three hours. Before he leaves, he’s hooked up to a portable chemo pump that operates for another 46 hours.
“Needless to say, I try to take it easy on the weekends,” he says. “When the pump comes off, the nausea sets in. It’s usually only a few hours until I feel like I’m somewhat normal. If that’s the worst I have to deal with, I’ll take it.”
If Barry’s perspective seems surprisingly sunny, that’s no coincidence. Early on, he made the conscious decision to dwell on positive thoughts a bit longer and to look for the silver linings. When he showed up for treatment one Friday with sores on his lips and hands so dry they were cracked and bleeding, and Rhonda and Dr. Muscato said he couldn’t have treatment that day, he decided not to see it as a setback.
“I chose to look at it as getting a weekend off,” he says. “Silver linings!”
That positivity, which he’s become known for around the halls at MCA, is also due to the support system he has surrounding him. There’s his immediate family — Sheila and their three kids: Raquel, 20, who’s a sophomore at Mizzou; Jordan, who will graduate from Hickman in May; and Holden, 15, a sophomore at Hickman — his three siblings, Jill, Renee and Don; friends; co-workers; and his church family at First Baptist Church.
“My support network has been simply unbelievable,” Barry says. “My friends’ and family’s support has been absolutely wonderful — but they’re all wonderful people.”
Although sharing his diagnosis with his kids wasn’t easy, Barry says they’ve handled it amazingly well.
“It turns out that one of the biggest ways they’ve helped is by letting life carry on as usual,” Barry says. “I know it seems somewhat morbid, but we even treat my diagnosis with humor quite often. If we encounter a long line at a restaurant, for instance, my kids will say, ‘Tell the maître d’ you have cancer, Dad!’ And I treasure such things.
“I don’t wish to be pitied at all,” Barry continues. “The biggest part of maintaining a positive attitude is to never accept the fact that I’m dying but rather that I am living.”
‘Your perspective changes’
Three years since his diagnosis, Barry’s treatment hasn’t changed much. Some of the medicines have changed, some doses have been reduced, but he still goes in every other week for treatment.
“My treatment has been relatively the same for going on three years, and as far as I know, there are no changes in sight,” Barry says.
Although following a treatment plan with no foreseeable end might seem discouraging to some, Barry doesn’t see it that way.
“I don’t want to resort to clichés, but when you’re told you have a year, maybe two if you’re lucky, your perspective changes a bit,” he says. “I can’t honestly say I jump out of bed every day, relishing every sweet breath of air I take and stopping to smell every rose I encounter, but I do try to appreciate the little things that make life worth living.”
Of course, staying positive isn’t always easy, and Barry says he’s guilty of finding clouds above his silver linings.
“I will admit, a Cardinals’ loss can upset me more than it should,” he says, “but even the tough losses don’t get me down as much as they used to.”
When it comes to the care he’s received at MCA, however, even a Cardinals’ loss doesn’t dampen Barry’s perspective. He praises Dr. Muscato and Rhonda for their constant care and expertise, along with the rest of the team.
“Robin Hubble is Dr. Joe’s nurse, and she has been wonderful to me since day one, but it certainly doesn’t end there,” he says. “From the time I check in for chemo and am greeted by the friendly ladies at the front counter, to the drawing of blood by the equally friendly phlebotomists, to the young ladies who take my vital signs, to the chemotherapy nurses, my biweekly sessions are not something I dread, but sometimes I even look forward to them.
“I must also give a particular shout-out to nurses Erin, Lindsay, Amy, Danny, Danielle, Amber – I’d like to mention them all because they have each helped with my treatments at one time or another,” he continues. “They are so warm and friendly, and they come incredibly close to making chemotherapy a pleasant experience.”
It’s that team approach to patient care, Barry says, that is the best thing about MCA.
“It has to take a special person to choose a career in which you’re constantly helping people deal with major adversities,” he says. “But that’s exactly what the staff is filled with — special people who care for you as if you’re their own family. It’s not a path I would choose voluntarily, by any means, but I am so, so grateful that it’s a path I need not follow alone.”
Note: Dr. Joe Muscato retired from Missouri Cancer Associates in September of 2018.