Fighting to the bitter end: Cold Spring mourns a beloved musician
April 28th, 2017
COLD SPRING — "Nobody wants to talk about the big 'D' word, but in this case we need all of our plans at the ready."
The "d-word" was one that Duane Kuss uttered only a handful of times in early April.
It is a word that few had said when describing Kuss's wife Bette:
Even though the outcome was likely — with fluid constantly building up on her lungs — conversations about the 62-year-old musician and mother of two always centered on the future, a future where Bette, an accompanist for Cold Spring's Peace Lutheran Church, Cold Spring Maennerchor, Great Northern Theatre Co. and the Rocori Middle and High School choirs would take up her place on the piano bench and lay her fingers on the keys.
It was a future that members of the Cold Spring arts community had rallied for, developing a spaghetti fundraiser to help with mounting medical bills.
"Bette has had her eye on the goal (of getting better) since day one," Duane Kuss said. "She would take any risk she had to with the intent to win the battle."
But this was not a battle to be won.
This is a future that Bette will not be taking part in. After a 146-day battle, Bette Kuss died Wednesday.
And Sunday's scheduled fundraiser has shifted its focus from hope for the future to remembering the past.
A life-changing diagnosis
It started as a lump on the side of her neck during her second year of college, an experience that would impact Bette Kuss for the rest of her life.
"She was diagnosed with Hodgkin's disease," Duane Kuss said. "And at the time of diagnosis she was given a 50-50 chance of survival."
It was during the late 1970s and Kuss said his wife's only chance of survival was to undergo cobalt radiation therapy. Bette received her treatment at Abbott Northwestern Hospital in Minneapolis.
"She would tell me stories of her entire body being red and burning," Kuss said. "It sounded like one of the most (ugly) experiences. She said she had about 15 to 20 sessions."
But it worked. Bette had been cancer-free ever since.
However, the side effects of that treatment had caught up with Bette, nearly four decades later.
The first sign was three years ago.
"Now, looking back, I can see how it happened," Kuss said. "Her activity level became less and less. It just knocked her off her feet."
Kuss said Bette went back to Abbott Northwestern. She was told her main aortic valve in her heart needed to be replaced.
Basically what the radiation treatment left behind was that it damaged her organs," Kuss said.
In Bette's case, several of her heart valves and her aorta were affected. This had caused Bette's lungs to fill with fluid. She was not eligible for a heart transplant given the weak state of her aorta. Kuss said a new, stronger heart would pump with such force that the deteriorated blood vessels could burst.
Doctors scheduled Bette for surgery and sent her home. A few days before her scheduled surgery Bette went into heart failure.
"The doctor said the chance of Bette having an event (before the scheduled surgery) was like getting hit by a bus," Kuss said. "So I found that doctor and told him, she got hit by a bus."
The surgery, however, was a success. And Bette was able to return to her normal life after 26 days in the hospital.
That was, until September 2016.
Fighting until the end
"It was a similar pattern," Kuss said.
With fluid collecting on her lungs once again, the couple was informed that Bette needed to have another valve replaced. Surgery was scheduled for Dec. 16.
"The chance of surviving the operation successfully was pretty small," Kuss said. "But Bette made the choice to have her second heart valve replaced knowing that there was a one in five chance of survival. She made the choice and fought gallantly."
But as that date drew nearer, Bette got weaker and weaker.
"From about mid-November on she would need somebody to help her in a wheelchair," said Rev. Mark Astrup of Cold Spring's Peace Lutheran Church.
By Dec. 2, Bette was brought in for emergency surgery to remove fluid buildup on her lungs, a result of her failing valves.
The next time Bette would see the inside of her Cold Spring home on Hermit Lake was mid-April.
Kuss said recovery after surgery was a bit rocky to start. But after some time on a breathing machine, things were slowly getting better.
"Things were looking good," Kuss said. "They even removed the breathing tube and she was on just an oxygen mask."
But by Christmas, "she was struggling to gain her strength," Kuss said. "Breathing became an issue. And unfortunately she didn't improve. She started reversing."
Kuss was intubated. But still the fluid kept collecting on her lungs. She couldn't speak. She couldn't swallow.
"The struggle back from that was small, incremental improvements," Kuss said. "The changes that we experienced day to day were so small. I can't even begin to describe the feeling."
In mid-January, Kuss had undergone a tracheotomy and had a speaking valve put in place. She was allowed to eat and drink again.
"The first thing that Bette had wanted was a sip of ice cold water," Kuss recalled. "That and some A&W root beer. So we made sure we brought up a case of A&W root beer so she could have some for dessert."
Kuss said he would spend most every night down in the armchair alongside Bette's hospital bed, advocating for his wife's care and praying for a miracle.
But Bette's lungs continued to fill with fluid.
"It was day 110," Kuss said. "(The doctors) had used IV access to (medicate her with) diuretics to help push her body to get rid of the excess water."
They were able to pull 10 pounds of fluid from her.
"And the very next day they took an x-ray of her lungs," Kuss said. "And son of a gun there was water on her lungs again. That was a turning point for me. I didn't care what it took. I knew the challenge of what it was like to care for someone at home (having helped my mother-in-law). I just thought we needed to get her home. And I don't know if I ever came back from that point."
Bette would remain in the hospital for about a month and a half longer before returning to home to begin hospice care.
Daily updates in the days leading up to Wednesday show Bette playing her beloved piano, a sound that had been missing from the Kuss home since December. She was able to celebrate Easter with her son, Sam, 23, and daughter, Lillie, 20.
"The kids understand the trials and tribulations," Kuss said. "They are aware of the challenges their mother's facing. They know that death is knocking."
And it did, on the morning of April 26, 2017
The past several months, while Bette had been struggling to get better, members of Peace Lutheran Church decided to rally the local music community around one of their own.
Sunday's pasta dinner has sold close to 500 tickets with the hopes of drawing in additional funds from Bette's GoFundMe
page and a silent auction.
"She (was) a very classy, vivacious woman," Astrup said. "She was always know for being flashy with her hats."
Kuss was the central part of Sunday worship services at Peace Lutheran. During her 20-plus years as a member, Kuss was instrumental in securing a new grand piano for the church.
"The old piano she played on was donated 14 to 15 years ago from a Sartell couple who had suffered a house fire," Astrup said. "She was so happy to have a brand new instrument and cared for that piano like it was a brand new child."
Kuss also brought her musical talents to GNTC, playing in the 2010 production of 'The Sound of Music', the Cold Spring theater company's highest-grossing production.
"She was so easy to work with," said Leigh Ann Davis, a GNTC volunteer. "I think what made Bette so special was that she was such a kind and loving person. She was always willing to help out."
Davis also got to know Bette through Bette's children Sam and Lillie.
Kuss was the accompanist for the high school's production of 'Bye Bye Birdie', a production where Sam had a lead role. Davis helped direct the 2012 play.
"It was fun to watch her interact (with Sam)," Davis said. "And I think that's the hardest thing for me (in dealing with this) is knowing how it will affect the kids."
Add to the list several Rocori High School choir students in teacher Kim Morford's class.
Morford said it has been about two years since Bette played with the choir. But past students still remember her and her crazy hats.
"They loved seeing what type of hat she was going to wear," Morford said.
It has been hard for many to watch the vibrant musician undergo a losing fight. But a simple text from Duane Kuss late Wednesday night puts into perspective how the past 146 days, while living the "for worse" part of the "for better or worse" line of wedding vows, have not tainted the nearly 25-year marriage to his late wife.
"We have no regrets," Kuss said. "We lived life together to the fullest."
Follow Vicki Ikeogu on Twitter @VickiSCTimes or on Facebook at facebook.com/sctimesvicki. Call her at 259-3662.
If you go ...
What: Bette Kuss Benefit pasta dinner.
When: 4:30 to 6:30 p.m. Sunday, April 30.
Where: Rocori High School commons area, 534 Fifth Ave. N, Cold Spring.
Cost: $12 for adults, $6 for kids 12 and under.