By CHUCK OFFENBURGER
COOPER, Iowa, Nov. 3, 2020 – I slid into bed the other night next to my wife Carla Offenburger, kissed her goodnight and, like I always do, told her I love her. She grabbed my hand, like she always does, then said something real different: “I’m afraid I’m slipping away from you.”
I’ve never been more heartbroken than I was right then.
Oh, we’ve known what’s coming. Carla, 61, is in her 10th week of hospice care after “dancing with cancer” for 10 years, as she’s described it. She has the incurable, damnable adenoid cystic carcinoma.
Her death doesn’t seem imminent. After their first visit in late August, UnityPoint Hospice nurse Molly Ritter told Carla she was pretty sure “we’ll be good friends” by the time the end comes. We asked specifically if we could keep her alive through election day (that’s today, Nov. 3), since we want her early ballot to count, and the nurse said, “Oh, easily past then.”
Molly Ritter, our nurse from UnityPoint Hospice, and Carla Offenburger on Oct. 27.
Now, Carla says, “while I don’t feel all that much different, I am more tired. I sleep longer and more often. Hospice has controlled the pain I have and, for the most part, I feel pretty good. But mentally, I feel like I’m losing it a little. I feel a little less engaged. Some things that used to be important to me now seem pretty trivial. I seem to enjoy things that are not so much for some long-lasting purpose, but more just for fun – like sporting events or putting together a puzzle.”
She feels like she owes you readers an update on how she’s getting along, but didn’t feel up to writing a column herself, so she asked me to do one. We sat down Saturday afternoon and I interviewed her for an hour.
After putting up with all my questions, she closed with this: “You can also put in there that being in hospice and knowing you’re facing the end of your life doesn’t mean that you don’t get irritated with your spouse sometimes. And with a few other people, too.”
That’s my Carla!
As you loyal readers of Offenburger.com know, we’ve been very open about our cancer journeys – plural. I was diagnosed first, in July of 2009, of non-Hodgkin’s follicular lymphoma. Chemo quickly whipped that, but a year later, it recurred in a more aggressive form, large-cell lymphoma. It took a stem-cell transplant at the University of Iowa Hospitals & Clinics in Iowa City in November, 2010, to save me. I’ve lived cancer-free since then, to my current age of 73. I’ve hated it that Carla has struggled so mightily, especially the past five years, while I just keep getting older, fatter and generally happier.
The reality, as Carla and I have often said, is that this cancer decade we’ve endured has been so much more than pain and occasional suffering. In many ways, it’s been the best 10 years of our 30-year love story. Because we’ve known our deaths could come quickly, we’ve been determined to celebrate life, love, family and friends. You’ve probably noticed that we Offenburgers have had a whole lot of fun together since 2009. And we still are.
But we know we are not going to be here for the long term.
In the past couple of weeks, Carla wrapped up her bookwork in her elected position as clerk of Franklin Township and resigned. Part of that job is managing the township’s two active cemeteries, including selling burial sites. Did you, I asked, “sell yourself a grave before you quit?” She gave me one of her looks, and answered, “No, but I’ve got the paperwork we need to complete to buy our spots.”
Her sisters Tammie Amsbaugh and Chris Woods, both of Des Moines, have been here to help go through Carla’s clothing, box up what she wants to give away, and deliver it to the St. Vincent de Paul Society – with the better clothes designated for women entering the workforce. And we’ve all talked about their mother Sue Burt, 85, who moved into our farmhouse with us 2 ½ years ago, continuing to live here with me as long as she can and wants to be here.
The Burts this past July — (left to right) Tammie Amsbaugh, mother Sue Burt, Carla Offenburger and Chris Woods.
Carla has always managed our finances, so last week she showed me and sister Chris – who is savvy on money matters – what we need to know. “You’re going to have to keep your eye on Chuck,” Carla said to Chris. “He’s not going to go on some wild spending spree. He barely spends any money at all. But you might have to stop him from giving it all away.”
And we also recently had a good long visit with Rev. LeAnn Stubbs, minister of care and connection at our Plymouth Congregational United Church of Christ in Des Moines, about officiating at Carla’s funeral there. We backgrounded her about Carla’s life. We expect to finalize arrangements with a visit to Slininger-Schroeder Funeral Home in Jefferson in coming days.
As for physically preparing ourselves for Carla’s death, probably the most important thing we’ve done is quickly and willingly accepting the suggestion on Aug. 20 from our oncologist Dr. Matt Hill, of John Stoddard Cancer Center at Iowa Methodist Medical Center in Des Moines, that it was time to cease cancer treatment and start hospice care.
Lab reports, CT scans and X-rays had made clear that Carla’s most recent treatment – infusion of immunotherapy drugs – was not working. Her adenoid cystic carcinoma was growing again, albeit slowly, especially in her lungs. There’s no chemotherapy known to be effective for treating ACC. Dr. Hill said that any more attempts at oncology treatment would probably require hospitalization, would likely make her very sick and lead to death.
But hospice physicians, nurses and associates “will keep you comfortable at home,” he said. “That will let you live out your life doing the things you want to, seeing the people you want to see and visit with, as long as you’re able.” That recommendation was affirmed by our family medical provider, ARNP Sara Fleecs, of Greene County Family Medicine Clinic in Jefferson, who put it ever so clearly: With hospice help, Carla can “live life like you want, until you can’t.”
Often, it seems to us, seriously ill people wait too long to enter hospice – and die within days. But for 25 years, we’ve had a different view of hospice programs, because a great friend and bicycling pal of ours, Ann MacGregor, had started and directed the Hospice of North Iowa in Mason City. She and her husband, the late Dr. John MacGregor, a surgeon, had made us well-aware of the benefits of hospice and other palliative care. That helped us embrace it.
So, for now, hospice nurse Molly Ritter visits Carla and me once a week here at our farmhouse, and oversees Carla’s medical care, staying in touch with Sara Fleecs as needed. Another hospice associate Lisa comes weekly to help Carla bathe and do light cleaning at our house. Another, Jean, comes every other week to give Carla a massage.
Who chooses to do hospice work, and why?
“I started nursing in mental health and substance abuse,” said Molly Ritter, who is 37 and lives in our neighboring town of Scranton. “But four years ago, I had a chance to join UnityPoint Hospice and work in the group that covers Greene, Boone, Guthrie and part of Carroll Counties. I like it because if I can give someone physical and emotional comfort at the end of life, that is very satisfying.”
She said she normally has 8 to 10 patients at a time, most for hospice care but a few for other skilled home health care, often after surgeries. The cost of hospice care is generally covered by health insurance programs for younger patients, and by Medicare or Medicaid for older patients. Hospice programs also frequently receive grants and they encourage donations.
Isn’t it tough for hospice personnel knowing they’re going to lose their patients?
“Yes, it can be,” Molly said. “You do get closer to some patients and their families, especially if you’ve been with them for a while. But that also means you’ve probably had some celebrations with them, like birthdays and maybe holidays. What you come to realize is that dying is a normal part of life – we’re all going to go through it – and what we’re doing is making the patients and their families as comfortable as possible. Usually they’re so grateful for the help. That’s some of what gets me through it.”
“The Loving Tree” in the front yard of our farmhouse, after friends decided to brighten up our view in early October by putting up our holiday lights early.
Carla now takes three kinds of pain medicine, as well as state-licensed medical marijuana oil, with dosages carefully monitored to keep her comfortable. She has oxygen available, as needed. “The best thing about the oxygen is that it calms me down, especially if I’m excited or agitated,” she said. “For example, talking for very long wears me out, and when I’m tired like that, it gets harder to breathe. The oxygen makes it easier to breathe, and that is calming. It helps me go to sleep at night.”
She has eaten very little normal food, or even had a cup of coffee, since January. Since then, she has survived on thick, essentially flavorless liquid nutrition that she ingests via a feeding tube that was inserted surgically through the wall of her stomach. She has four feedings per day, and generally naps after the first three. “And I drink lots of water,” she added.
Carla says “it baffles me that I have no interest in eating any of my favorite normal foods. I don’t miss it. I don’t crave it. I still like watching others eat and enjoy it, and I like talking about meals and helping plan meals for you and Mom. But I really think if I tried to eat any of it, it’d make me sick to my stomach.”
She eats an occasional half grapefruit, and she’s had a very few root beer floats and ice cream cones.
Her weight has dropped to about 100 pounds, where it’s held steady for several months. She said as death nears, she expects that she’ll become even less interested in eating even her tube food, that her weight will decline, she’ll be sleeping more “and I’m going to slip away, like I told you the other night.”
Does thinking about that make her sad? Or afraid?
“Of course, it seems sad to me, but I’m not angry-sad about it,” she said. “I’m sad that I’m going to miss so much, and that I don’t even know what that ‘much’ will be. Once I’m gone, I don’t think I’ll be missing all of you who are still here. But you all are going to be missing me, I hope!”
She said her spiritual fitness “has certainly made me totally at ease with what’s going to happen. If you want to find comfort in God’s strength, it’ll be there for you. In a weird way, it’s even kind of exciting what I’m going to be watching, especially if I can stay somewhat conscious and watch without pain and suffering. It’s like waiting for a guest that’s going to come to our house, and I’m getting ready. It’s not an uninvited guest.
“I really believe that when I die, God’s going to come lift me up and say, ‘Come on, Carla, let’s go!’ And I’m going to say, ‘O.K., I’m ready!’ ”
She paused, then said, “Well, I might not be that nice about it.”
But while she’s still here, there is so much she’s grateful for.
“Neat things have happened,” Carla said. “I’ve had contact from so many people, some that I’ve expected but others that have really surprised me. Pastors, former students I taught, some of their parents, people I’ve worked with over the years.”
Our son Andrew Offenburger, his wife Maria and their daughters Lindsay, Casey and Audrey, who live in Oxford, Ohio, have visited here twice in recent months, and we’re doing weekly video calls with them. Our great friends the Bateses of Centerville, Tenn., and the Cullens, of Storm Lake in northwest Iowa, have been here.
Carla Offenburger with granddaughters (left to right) Audrey, 5, Lindsay, 13, and Casey, 10, on an October outing at Deal’s Orchard just west of Jefferson.
The extended family has tightly rallied ’round us. Carla has been on a 3-day retreat with her sisters at Whiterock Conservancy just outside nearby Coon Rapids. The women in the Offenburger family had a sewing party around her at a family home at Lake Panorama. And a lot of those same Offenburger women came to our farmhouse last November after persuading Carla to give them a one-day seminar on pie baking. Carla wound up surprising them all that day. “The reason I’m teaching you all how to make pies now,” she told them, “is because you have to make them for the potluck after my funeral!”
Hollie Roberts, of Jefferson, who ran the foundation at Greene County Medical Center in Jefferson when Carla was community relations director there, organized friends in early October to come put up Christmas lights on the big evergreen tree in front of our farmhouse, to brighten our evenings here. They nicknamed it “The Loving Tree.”
That day Hollie told Carla she’d written a poem about her, and that the poem had just been published in the 2020 edition of “Lyrical Iowa,” a booklet of the best work of Iowa’s current poets. Titled “Carla’s Battle,” here it is:
For now, she is fragile
Her fierceness, sharp edges visible
Seeks a quiet place to rest
She was told that she could not win
Her opponent, cruel and incurable
Has raged within her for ten years
Surgeries and procedures
Leave her bent, but not broken
Her shine, though dimmed, still has shimmer
Relentlessly she researches, questions
Believes there should be a plan “B”
Her fearlessness refuses defeat
As in the past, we expect her to rise
Like the Phoenix
Transformed and renewed once again
Every skirmish comes with a price
Although painful, she is willing to pay
Knowing with each new sunrise, she wins again
A week later, Matt Wetrich, of Jefferson, a friend who is a city council member and also the naturalist for the Carroll County Conservation Board, called. He said he was feeling so sad about Carla. “It’s one of those things where you wonder, ‘What can I say? What can I do?’ ” Wetrich told us. “And I thought, ‘Well, what’s something I do that seems to bring joy to people?’ And then it hit me, ‘Maybe she’d like to release a raptor back into the wild after it’s been rehabilitated from an injury’.”
And so she did, releasing a barred owl into the air in our front yard!
“Now that wasn’t something I had on my bucket list, for sure,” Carla said. “But there was something really neat about seeing that owl with its big wings – it had a 4-foot wingspan – lifting out of my arms, up and away!”
Carla Offenburger with naturalist Matt Wetrich and the barred owl, which Matt helped Carla release back into the wild in mid-October. The owl had been rehabilitated after earlier suffering a concussion in an apparent collision with a vehicle.
Even more impressive and moving to us has been the dedication of several of Carla’s closest friends.
Her high school classmate Suzan Kimberly Lang, still living in Des Moines, has spent hours here through the past three seasons, tending Carla’s gardens and talking with her ol’ pal. Ditto with Mary Riche, also of Des Moines, who has been Carla’s friend and mentor for 35 years or longer.
Our neighbors and friends Karen and Doug Lawton have provided for us like you can hardly believe. They did some of the heaviest garden work, even while they were still doing their own farm planting and harvesting. At time of peak activity in the farm fields, Karen just added Sue Burt and me to the list of planting and harvest crews she was cooking for and serving.
And Carla’s best friend Nancy Teusch, of Jefferson, “has been the gift I never expected,” Carla says. “I never expected I’d have a friend who would devote so much time to me, even knowing what the end result is going to be.” Nancy visits every weekday, spending two or three hours walking with Carla, reading with or to her, sharing jigsaw puzzles, rubbing her back, helping clean. Nancy has been doing that since March, quarantining herself at home before she started her visits to make sure she would not bring the coronavirus to her ailing friend.
All this support has enabled Carla, even in the last weeks and months, to pretty well keep doing the three things she loves doing most – some gardening (with the list of friends who’ve helped now topping 30), reading (44 books so far this year) and quilting.
The quilting is an especially charming story, I think. Carla came to quilting later in life, becoming interested while she directed a couple of quilt shows as fundraisers for the Greene County Medical Center. She didn’t start quilting herself until 2012, after she decided to give up her earlier devotion to bicycle riding.
“I started slow, doing a few quilts as I learned,” she said. “About 2017, when I realized I probably wasn’t going to live a lot longer, I started being intentional about making memories with my granddaughters, my sisters and close friends. I decided I would try to make quilts for all those close to me, something they’ll be able to keep and use for the rest of their lives.”
She’s now finished more than a dozen of them, each designed especially for the recipient, and done in that person’s favorite colors. And for many of them, she’s also quilted table runners and wall hangings, too.
And for me? Well, I’ll have lots of “stuff” that Carla and I have shared. But what I’ll treasure most is memories. I hope I’ll get through her death and aftermath without becoming a complete mess. I’m counting on the acceptance, gratitude and spirituality that I’ve learned in Alcoholics Anonymous to see me through whatever span of life I’m fortunate enough to have after Carla.
Life is good. And it’s been especially good with her.
You can email the columnist at chuck@Offenburger.com or comment using the handy form below here.
You can write Carla Offenburger directly at carla@Offenburger.com.