Dream weavers: C.R. couple facing end-of-life realities granted beach getaway through nonprofit organization
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November is Pancreatic Cancer Awareness Month. Every day brings pancreatic cancer awareness to married musicians Ron DeWitte and Lynne Rothrock of Cedar Rapids.
DeWitte has been battling pancreatic adenocarcinoma for three and a half years, which spawned new tumors in his lungs nearly two years ago. Despite aggressive treatments, the couple know his time is running out.
But from Oct. 28 to Nov. 1, the guitarist and the cabaret singer who married in 2005 escaped to Florida’s Sanibel Island, thanks to the Dream Foundation.
The nonprofit organization, based in Santa Barbara, Calif., grants wishes to terminally ill adults who live in the United States. Dreams typically range from U.S. vacations to quality-of-life enhancements such as lift chairs, computers or televisions.
DeWitte wanted to see the ocean again and eat good seafood.
The couple have traveled the world as cruise ship entertainers. Traveling for pleasure, however, lies outside their budget. DeWitte’s daughter, Jody Jensen, heard about the Dream Foundation a couple of years ago, and the timing was right to “get the ball rolling” this summer, Rothrock said.
Hurricanes and care for the couple’s beloved dying dog delayed their getaway, but on Sept. 25, they got the call they’d been waiting for from the Dream Foundation. The organization paid for two airfares and four nights at a condo on the beach. Gifts from several area residents helped defray meal and car rental costs.
“It was a great trip,” DeWitte declared.
The weather was chilly when the couple reached the Gulf-side island near Florida’s southwest tip. That didn’t keep Rothrock from walking on the beach, looking for shells and taking a dip in the ocean. Only one of the days was warm enough for DeWitte to venture onto the sand, but he did get to soak up plenty of scenery and fresh seafood, and in the couple’s Facebook photos, he smiled.
He’s always been a quiet guy in the background, preferring to let his soulful guitar riffs and his effervescent wife do the speaking.
A former member of Bobby’s Blue Band, Redwing and The Linn County Band, DeWitte, 68, has been a familiar face on the Eastern Iowa music scene for 40 years. He was inducted into the Iowa Rock ’n’ Roll Hall of Fame with The Legends in 2000, and into the Iowa Blues Hall of Fame in 2003 for his guitar wizardry.
Music has been his best therapy.
In spite of extensive surgery, chemotherapy and radiation, he’s kept playing — in his wife’s various concerts; with Bob Dorr & The Blue Band at the former Campbell Steele Gallery in Marion in May; in the Aug. 12 Czech Village Blues Festival in Cedar Rapids; a number with Vince Gill and the Time Jumpers Band in a Nashville club in April; and continuing with the local Swingin’ Doors band in venues from Sutliff and Walford to Dubuque and appropriately, DeWitt.
He’s planning to perform in his wife’s upcoming Christmas Cabaret, with shows Dec. 14 to 16 in Whipple Auditorium at the Cedar Rapids Public Library.
He’s proud that through his health ordeal, the only gig he’s missed fell during the Florida trip. He considers himself lucky that the chemo hasn’t made him sick to his stomach, but it has knocked him off his feet for three to five days, left him feeling pretty rough during some gigs, and stolen his appetite.
One of Rothrock’s great joys during the beach getaway was seeing him dive into seafood with gusto.
“We’d been there less than 24 hours, and I’d already seen him eat more than he’d eaten in the previous three days,” she said.
The extensive Whipple Procedure he had at University of Iowa Hospitals in October 2014 affects digestion, she explained, and impacted his appetite. In essence, the surgery removed the tumor and other structures near the pancreas, then involved reconnecting the digestive system.
They knew it wouldn’t cure his cancer. “It was time-buying,” Rothrock said. It also gained the couple a great friend in his surgeon, Dr. James Howe, who attends DeWitte’s performances.
Now, it seems time is running out.
“We’re in a sacred space,” Rothrock said.
A CT scan in early November showed that her husband’s chemo cocktail is no longer working, and the tumors that developed in his lungs nearly two years ago are growing. So the couple are consulting with doctors to weigh their options. One powerful drug they have purposely avoided causes neuropathy in the fingertips, which would end his guitar-playing days.
“As much as I don’t want to stop playing, I don’t want to stop fighting, either,” he said in a Nov. 6 interview at the couple’s home. “These tumors haven’t even been giving me symptoms, to speak of. I’m not coughing up blood, I’m not coughing more than I ever had.”
“You do cough more than you ever had,” Rothrock countered. He shrugged.
He doesn’t understand why the tumors can’t be zapped. “I don’t know how big (the tumors) have to get before they actually kill you,” he said. “They haven’t killed me so far.”
“This is not a battle he’s going to win. We’ve always known that,” she said. “There is a trajectory. We’re moving closer to that trajectory every day. ...
“My husband has been sliced, diced, burned and poisoned almost non-stop for three and a half years,” she said, adding that he handles the chemo better than she does. “He’s very brave about it, but when he comes home that first day, he looks white as a ghost, and even he can’t describe how he feels with words, because he feels so awful that sometimes he just has to shut down and withdraw and go to bed.”
News this week has been discouraging.
“We did meet about a possible clinical trial that is not happening at this point. All of this is quite simply the hardest thing I’ve ever had to deal with and it is not even happening to me. The confusion and differing doctor opinions do not help,” Rothrock posted Tuesday on Facebook.
She has been candidly chronicling their journey on Facebook and DeWitte’s Caring Bridge page ever since June 2014, a month after obstructive jaundice sent DeWitte to the hospital.
He’d always been very healthy, so they were hoping gallstones were the culprit. Instead, cancer, surgery, chemo, radiation and caregiving became their future.
“I had a clean physical three week prior to being diagnosed with death,” DeWitte said.
It was a flashback for Rothrock, whose father died from pancreatic cancer in 1996, despite having Whipple surgery in 1995.
“I knew the drill,” she said.
This new journey, however, would play out in the public eye, so to avoid repeating everything “800 times,” she began sharing updates via social media when she thought it was just gallstones. Then it became much bigger.
“Anyone who knows me, knows that’s the way I roll,” she said. “I’m just a big mouth, and I don’t really like to keep things to myself. I went through this with my dad, and at the time, I remember thinking we don’t handle these situations very well in our society. People don’t know what to say, so people don’t say anything. Whether it’s a long-term illness or death, we don’t cope very well with it.
“And in my opinion, talking about it, sharing about it is a step in the right (direction), because it’s going to happen to everybody on some level. So it definitely is cathartic for me, and also helps me feel like if people kind of maybe understand how difficult my life is, that perhaps they’ll be a little kinder if I’m acting crazy at work — and have insight into what life is like for a person who is going through this.
“At the same time, there are people who are more private and don’t have the kind of jobs we have, and therefore, they’re feeling this same way, but they might not get as much extra attention and care. So hopefully, it makes people think about anybody they know who’s having to be a caregiver. ...
“I get a lot of people who tell me how much they either relate to or get out of those things that I write and share, and it’s helpful for me, too. ...
“We’re semipublic people, and I feel like we could do these concerts and have everybody wondering, or we could just tell them. And then what they are is loving (and) supportive. What you receive is hugely comforting.”
For both of them.
“The huge outpouring of care and concern for me has been a wonderful thing,” DeWitte said.
And while he seems upbeat on the outside, he’s not always upbeat on the inside.
“I can get pretty down about the whole deal, but I try to keep my attitude up, especially if I’m out working. What’s kept me going is my great support system — Lynne, family and music.”
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