Carla started hospice in August, with advice to “live life like you want, until you can’t”


COOPER, Iowa, Sept. 1, 2020 —We won’t forget the date.  August 20, 2020.  We won’t forget the message.

On Thursday, August 20, I was to have a routine visit with my oncologist Dr. Matthew Hill, of John Stoddard Cancer Center at Iowa Methodist Medical Center in Des Moines.  Plus another regularly-scheduled infusion of my immunotherapy drug Keytruda.  We knew the conversation would include when I would undergo a CT scan to see if Keytruda, the “last known option at this point,” was working or not.

In mid-May we had learned that my previous immunotherapy drug, Nexavar, was not working, hence Dr. Hill sought access and approval for Keytruda.

While Keytruda doesn’t have any record of success with adenoid cystic carcinoma, the cancer I’ve been dealing with for 11 years, the drug has been used successfully in treating lung cancer.  Tumors in my lungs have been Dr. Hill’s biggest concern.  We had nothing to lose.  I started the every-three-weeks infusion sessions in June and was thrilled with the lack of side effects.  So we’ve known all summer that Keytruda was most likely the “last opportunity” for me.

Dr. Matthew Hill and Carla Offenburger, earlier during her cancer treatment.

Last Thursday got blurry quickly.  I complained to Dr. Hill about being out of breath a lot, and in fact, I was out of breath when I was complaining.  The walk from the parking lot to the office to the exam room had worn me down.  And then I had to give my health update, which requires a lot of talking, and doing that takes my breath away too.  Dr. Hill was immediately concerned about the possibility that blood clots could be forming and causing my breathing issues. He wanted a CT scan ASAP.

So his scheduler, Christy, worked her magic and got me in immediately for a CT angiography, which is an enhanced CT scan that looks for blood clots.  This scan would also show us if Keytruda was working.  Dr. Hill ordered a hospital transporter to get me from the cancer center to Iowa Methodist’s  radiology intervention area.  He didn’t want me walking that far.

While we waited for the transporter, we finished our consultation with Dr. Hill with the discussion of “what next?”  My husband Chuck and I were clear: If Keytruda wasn’t working, we’d move forward into God’s grace, having exhausted all other treatment options.  Dr. Hill agreed.  He thought any options that might be at all “long shots” would kill me.  I’m too thin and too weak.  It was a sad meeting.  I cried.

The scan went smoothly.

While we awaited results, we found Chuck some lunch, I fed myself via my feeding tube, and we hung out in the Iowa Methodist parking lot, hoping Dr. Hill would receive the scan results and he could give them to us face-to-face.  We also put the scheduled Keytruda infusion on hold, waiting to see if it would even be necessary.

After waiting a couple hours with no report yet from the radiologists, we decided to drive on home.  Dr. Hill then called in the early evening with results we didn’t want to hear.

The Keytruda had not been working and my tumors are slowly progressing, although one in my spleen has grown one-third larger since my May scan.

We’ve always known a day would come with results like this.  Alas, here we are.

We had our second honest and open discussion of the day with Dr. Hill about what we already knew – we’ve gone through all my treatment options with no success.  It was time to acknowledge that anything left to do or try would be a death sentence for me.  I am too weak for any surgeries.  And whatever chemotherapy Dr. Hill could consider would be equally a deal breaker, making me too sick, ruining my current quality of life and, ultimately, probably kill me.

Dr. Hill recommended I enter into the UnityPoint Hospice program.  He strongly encouraged us to view this as the first step in what could be a long relationship.  He made it clear that patients can leave hospice if they think it’s not needed at some point.  He said he’ll continue to research whether there are any breakthroughs in ACC research, and urged us to do the same.  But bottom line, he said getting into hospice early and getting comfortable in it will make “the end” easier for all involved.  We asked him to go ahead with the referral.

Chuck and I, of course, cried and hugged when we got off the phone.  And then we did what we do best — started planning, started visualizing.  And we started down our new road of reality.

When we really analyzed what I’ve been through in the past 10 months or a year, we realized that I’ve been taking strong drugs that have not been successful.  My tumors have been slowly growing.  Now, they’ll be slowly growing (and we hope very slowly) while I “live life like you want, until you can’t,” as my primary care provider Sara Fleecs, in Jefferson, put it to me in a phone call after she received our news.

And I’ve been living a pretty good life lately, all things considered.  With COVID-19 a major threat to someone in my condition, I have been living a pretty secluded life since last March.  Oh, I’ve reached out a bit farther recently, but I avoid most crowds and most opportunities to be “out and about.”

I have really enjoyed my quilting, reading, walking on the Raccoon River Valley Trail, and keeping my flower gardens watered.  I have made real quality time to spend with my closest friends and, of course, my family.  I advocate at every turn to see my granddaughters.   I am in total joy sitting on my newly screened-in front porch with a good book, a view of my gardens and with my mother, Sue Burt, in the chair next to me.  Life is good, folks.

But what do you do when you get the recommendation of “hospice?”

You panic a bit, you think of the outcomes you‘ve known from those you’ve followed through hospice.  You try to breathe.  Last Monday, just four days after having been referred, Hospice nurse Molly McPherson Ritter, who lives in nearby Scranton, was in my living room ready to introduce herself and the program to me.

I was very comfortable with Molly, who will be by my side, for what we hope is a long time.  And she’ll oversee my care with a care team – Molly, other hospice workers (aides, social workers and therapists), the hospice medical director, my pharmacy, my primary care provider Sara, and if/or when needed, Dr. Hill.

Molly will visit every week, take my vitals, review any other health needs I might have, and monitor my overall health.  I will also have a home aide who comes in once a week to help with some light housekeeping.  I’ll have access to a massage therapist.  I’ll have a team available 24/7.  WOW!  Talk about feeling loved.

Molly made her second week visit this past Monday and it was perfect.  She got me a bit more comfortable.  She answered my questions and concerns, and she talked me through some anxiety.

A lot has started running through my head when hospice entered my home.  I started by making serious “final” to-do lists (life insurance policy checks, funeral arrangements, financial plans, etc.).  And then I found myself growing a bit more anxious – do I need to buy two tubes of toothpaste or just one?  Or, should I really buy new walking shoes, when the ones I have will probably see me through.  I cleaned out a few dresser drawers.

You can imagine how quickly your mind can wander in the wrong direction.  And then I stopped!

I started cutting fabric for my next quilt, started a new book, took a walk on the trail with friend Nancy Teusch.  And I ordered the walking shoes!

I’m committed to being present for this next stage in my dance with cancer.  Honestly, it’s an opportunity most of us don’t get – being present in the time of our dying.

I’m also committed to spending more time looking for all the good in my life and hugging it tightly.  I hope you’ll do the same with me.

You can write the columnist by email at carla@Offenburger.comor comment directly about this column by using the handy form below here.

54 thoughts on “Carla started hospice in August, with advice to “live life like you want, until you can’t”

  1. Carla, I’ve known Chuck for years and my thoughts and prayers are with you both. My husband, Bill, was on the hospice program and the people involved couldn’t have been nicer. Que Sara, Sara and God bless you both.

    Sally Eischeid Hopkins

  2. “I’m committed to being present for this next stage in my dance with cancer. Honestly, it’s an opportunity most of us don’t get – being present in the time of our dying. I’m also committed to spending more time looking for all the good in my life and hugging it tightly. I hope you’ll do the same with me.”

    Such STRONG and WISE remarks, Carla! You are an INSPIRATION!

    Sue Green, Cedar Falls, IA

  3. Thinking of you and praying you live life like you want for a very long time! You are the light in dark times.

    Debra Carle, Des Moines

  4. You’ve always known. That is faith speaking and that faith is the faculty we have to experience and realize God’s grace. Together and alone, in community and on these pages. Thank you. You inspire me.

    Sandy Overbey, Washington DC

  5. Carla, thank you for sharing your story. Stay strong as you continue your journey on this blue planet on your own terms. Thoughts and prayers for you and Chuck.

    John Turpin, Jefferson IA

  6. Carla, I’ve been following you since you began this dance 11 years ago! What a fighter you have been! Thanks for sharing the peeks and valleys of your marathon! I am praying that there will be more stories you can share with us all! I am happy knowing you believe in eternal life! You are a remarkable woman and I’ve admired the way you have carried on with your life, even though the news has been tough to take! Bless you!

    Jack Lashier, Clear Lake IA

  7. Many years ago, I asked Chuck to be the master of ceremonies at our small Catholic school’s fundraiser in Creston, Iowa. That was when I finally got to meet the guy whose column I’d read all those years. Little did I know that I’d get a bonus meet — his amazing and witty wife Carla. The event was an auction, and there were some truly hideous pillows someone sewed and offered. I was afraid nobody would bid on them, but you saved the day by purchasing them (but threatened that they’d be in the ditch on your way home). Since then I’ve always followed you both and keep you in my prayers. To a life well lived!

    Leslie Goldsmith, Creston IA

  8. Carla, You have always expressed yourself so well. Thanks for sharing this emotional story. You know I am always your 6:30 a.m. prayer warrior. Hugs and love to you.

    Lois Clark, Jefferson IA

  9. Carla, thank you for your thoughts and feelings. I know it’s been a long and hard battle for you and Chuck. God has blessed you with never ending strength of character. Stay strong!

    Doug Poland, Winterset IA

  10. Carla —-you are such an inspiration. I have followed your battle and prayed for you for years (and will continue to do so) — was always amazed at how you and Chuck marched on enjoying and loving life. Easy to do when you are part of that Offenburger clan. My prayer for you is that you will be able to do so for a long time.

    Carol Coppola, Des Moines

  11. Carla, what a very strong woman you are. I can feel, in your words, that you are full of life. Grace and Peace be with you.

    Irene Hardisty, Des Moines

  12. You are such an inspiration, Carla. Your journey has been a road map on how to live one’s life…

    Mary Beth Costello

  13. Carla,

    Oh, my. I’m always worried about saying the wrong thing. Your words, however, are just perfect. Thank you for sharing your thoughts and your journey! Be assured of my prayers!

    My late brother, Bruce, and I had strong conversations about how to face…the end. So thankful for God, for faith, for friends and family and for scripture promises and comfort. Your writing today is full of inspiration.

    A conclusion that he and I reached together was that we would do our best to be thankful for whatever life we had and not feel badly for not getting more. One thing that stands out to me about you and Chuck is your commitment to making the most and best of your lives. Thank you!

    I heard a prayer way back when I was in high school that impacted me so much that I memorized it and have repeated it in all my life transitions: “Lord, I know not where I go from this familiar scene, but You are here and You are there and all the way between. And, though I go from all I know to some deep, dark, unknown, this I know: I shall not go alone!”

    Nothing can separate us from the love of God that is in Jesus Christ our Lord!

    Blessings on you and Chuck today and always.

    Rev. Wes Smith, Shenandoah High Class of ’65, Smithfield VA

  14. Carla, I have admired you for so long in the journey of life you have shared with all. I will continue to keep you and your family in my prayers, and I can tell you I know how wonderful hospice care takers are, they are the best. Take care and love to you and Chuck.

    Pat Perkins, Shenandoah IA

  15. Carla, your faith is so deep and truly inspires the rest of us. Thank you for sharing your story. I have known Molly many years (she is a friend of our daughter Val) and she is one of the best people around and will take good care of you. Keeping you in my prayers and hoping that you will enjoy life and family for a long time.

    Shelly Berger, Jefferson IA

  16. Everyone’s destination turns out to be the same, Carla, but everyone takes a different path. Yours is especially arduous, and that’s why the way you make the journey is so inspiring. I suspect everyone who knows and loves you is thinking, “Wow. I wonder if I could handle it with Carla’s grace and equanimity.” You set the bar very high, and clear it time after time. We hope we can continue our admiration for a very long time.

    Rick Morain, Jefferson IA

  17. Hi Carla! I haven’t been following your journey that closely over the year but now I will! You are so strong and inspiring. Will go back in time and read them. I promise to live fearlessly today and will be present with friends and fam, and keep stress under perspective. If you want to Zoom call with your old bike team let me know and I will help arrange that. Or we could do a ride by your window!? Loved our days of riding bikes together. Love to you!

    Kelly Huggins Baughman, Des Moines

  18. Carla, bless you and Chuck. When my time comes I hope I can remember your mantra and that it will give me strength. I so admire what you have done with your life. I grew up with Chuck and I wish we had lived close to you and Chuck after we both left Shenandoah. You would have added so much to our lives. You are an inspiration to everyone. Prayers for you.

    Karen Chesshire Ray
    Ponce Inlet, Florida.

  19. Carla, I have always been inspired by you and your willingness to share your life and your story — all of your story — the difficult and the positive! Your vulnerability touches me so deeply! Looking for the good, being in gratitude, moving forward is something we all can aspire to during difficult times! Thank you for having such a beautiful soul! And sharing it! I have been saying this short meditation lately and I have found some comfort in it:

    I am at peace
    I am at peace with not being at peace
    I am content

    My thoughts and prayers are with you!

    Barb Godwin, Des Moines

  20. What a great example you are for all of us on how to live life! Thanks for sharing your journey in such an honest and positive way. I will continue to pay attention to your journey and how you and your family carry on! Prayers continue.

    Janet Durlam, Jefferson

  21. Carla, this is one of the most remarkable things I have ever read. Your honesty, courage, and writing skills shine through and are incredibly inspirational. I am in awe! Thank you for this gift to all the rest of us. We are all with you! Prayers to you and Chuck from Nashville.

    Andrew Maraniss, Nashville TN

  22. Your words at the end remind me so much of Erma Bombeck, who lived with kidney disease most of her adult life and spent her last years busily working as she gave herself in-home dialysis four times a day. She wrote: “When I stood before Him at the end of my life, I didn’t want to have a single bit of energy or talent left. My plan was to wear out, not rust out.” I look forward to pictures of the quilt you are working on.

    Allison Engel, Des Moines

  23. Carla, my heart hurts but what a beautiful story you have made of your journey. I hope you have written a book to share with others. When I saw you last on Facebook, I was afraid to ask how you were doing because you looked so thin, so I said nothing. I have enjoyed your comments and your choice of books to read and just everything about you and your precious husband Chuck, who has been my friend forever. One thing I love about Facebook is that it keeps us in touch so thanks for that. You will be on my prayer list and I wish you luck and know you have lived a good life. Take care.

    Lois Davis, Des Moines

  24. Profiles in Courage! I have read many accounts of Courage from the Military, Law Enforcement, Firefighters, First Responders, but that is one of the Most Amazing Stories of Courage I have ever read. Such Dignity and Grace and Love. I have read many books on “NDEs” or Near Death Experiences, and many Who survive a Near Death Experience tell of a Loving God and a Heaven of Love and Wonder, and they never fear Dying again. God Bless You and Chuck. You are the Most Courageous Person I know.

    David Bayless, Shenandoah High Class of ’65, Des Moines, IA

  25. I write with foggy eyes as I try to remember all the blessings in life you have bestowed on me and my family and so many others. Chuck and I have been best friends since our days at Vanderbilt more than half a century ago. We have shared each other’s lives thoroughly and intimately. Of all those years the best ones have been when there was you to share them with.

    Douglas T. Bates III, Centerville TN

  26. I have learned much from you and Chuck over the years; your grace, your ability to capture in words so eloquently so many of us may benefit through the vicarious experience of seeing and experiencing a wondrous life through your lens. I will continue my education with you and Chuck as you bravely directly face your future. Thank you is a pale way to express the gratitude I feel for letting us walk with you.

    John Busbee, Des Moines

  27. Carla, we are all in awe of how you and Chuck have dealt with your illness with such grace, strength and faith. Sending love and prayers.

    Kathy Morain, Jefferson IA

  28. Dear Carla and Chuck,

    Dave and I read your courageous and inspiring news through misty eyes. We will both picture you and Chuck sitting on your lovely porch with you continuing to quilt and wearing your new walking shoes. This next chapter of your cancer journey is certainly a challenging one, but one we know you will meet together with all the grace and dignity you two always show. In your honor Dave and I will be extra conscious of “looking for all the good in our lives and hugging it tightly.“ You both are in our hearts as well as in our prayers.

    Peggy and Dave Glascoff, Denver, CO

  29. Carla, you are a gift to all that know you and I am a better person for knowing you and Chuck. Thank you for your words that remind us all to be strong always. Prayers will continue for you and your family.

    Mark Hilton, West Lafayette IN

  30. Carla: Thank you for writing about this stage of your journey. You are ONE COURAGEOUS WOMAN! We readers are grateful for your writing over so many years and for the example you’ve set for us. You are in good hands. Enjoy the peace and quiet of Simple Serenity Farms — so aptly named. Thinking of you.

    Clara Hoover

  31. Yes Carla, you are loved, all these heartfelt comments are a true testimony of that. We have been following you with your “dance with cancer” all these years and we will continue to do so. You are one tough lady. Our thoughts and prayers are for you and Chuck. God be with you.

    Sam and Lois Kauffman, Audubon IA

  32. Thinking of you, Carla. Your positive outlook and strength are inspiring. Know you are in my prayers.

    Denise Promes, Jefferson IA

  33. Carla,

    To say that your article moved me would be an understatement. It brought to mind 19 years ago when my first wife Barbara entered hospice after a courageous 10-year struggle with cancer. Though I can’t think back to that experience without sadness, I also remember her time in hospice as beautiful, with plenty of love and laughter and just plain fun. Like you, she had submitted herself to God’s grace, and busied herself with things she loved to do, like making high-quality prints of the best of the thousands of photographs she had taken over the years, playing with the dogs, and keeping me in line. The end came peacefully.

    Though I don’t know you or Chuck personally, I knew Chuck’s late brother Dan well (in fact, I was Dan’s successor at the Evening Sentinel in Shenandoah back in ancient times). But know that I am thinking of you both, and praying that in your remaining time you will be able to “live like you want until you can’t”.

    Aaron Barnes, Sequim, WA

  34. Hi Carla. We haven’t seen each other in decades but i remember you fondly. Thank you for sharing such an emotional issue with us, your readers. I hope to be reading your work much, much longer. My best to you and the goofy guy you married!

    Karen Mitchell, Des Moines

  35. Peace be with you, Carla! You have a great attitude, and the Lord will welcome you with open arms when that time comes! Thanks for sharing about your journey!

    Janine Kock, Westside IA

  36. Carla,

    I am part of the Landon House band of brothers (from Vanderbilt University years) with Chuck. Thank you so much for sharing this part of your journey with us and making me a better person for just having read this. That is real power!

    When Nancy’s ascending aorta burst on March 1, 2017, she was “present in the time of her dying” in the two minutes we had between diagnosis and surgery. We thanked each other for 45 great years of love.

    We had so many friends spiritually “hugging” her and us while she was in a coma for three weeks! I learned the universe is about relationships, not events. Death is an event punctuating the relationships of life.

    I think the combined love of friends and families convinced her spirit to crawl back into that very damaged body. She survived. Now being present with each other every day, that we have left, is joy.

    I tell you that so you will know we somewhat understand and can authentically appreciate you. Be assured we send our love to you and Chuck and continue to read your posts with gratitude for you both.

    Pace VanDevender, Albuquerque NM

  37. Such difficult news to process, no matter how when it comes. Your doctor was wonderful to be forthcoming with “what’s next”. Your hospice team will make everything easier: more care, tailored just for your needs. They also are there for Chuck and your family. You may not always know what you need, mentally or physically, and that’s all right. That’s what they’re there for. I’m so glad you have Chuck and family who can be there for you. And you’re right: just keep on doing what you like while you can — like order shoes! You’re living, after all!

    Mikki Schwarzkopf, Jefferson IA

  38. Chuck’s profession has been to share the world with us, and in doing so he has shared his family and friends with the world. We are here and there and there, we and the generations eternally before and after us. You may have ordered walking shoes, but you are dancing in your words, and I smile at the pitter-patter of the one-two-three-four generations dancing with you — Andrew and his children, Chuck, Shenandoah’s Herman so young and Anna so old. Remember, as you bebop around the enormous crowd celebrating you, laughter is the best medicine.

    Howard Chesshire, Essex IA

  39. Dear Carla,

    I fight back tears as I read this. What a wise and courageous attitude you have.

    It’s much like Rob’s approach to his final act. Never angry or sorry for himself, he just wanted to live as fully as he could among those he loved until he no longer could. “Let’s not waste this time being sad and angry,” he said. “Let’s have drugs, sex and rock ‘n’ roll.” I wish the same for you.

    Sending much love to you, Chuck and the rest of the family. Stay strong and focused on what matters.

    Rekha Basu, Des Moines

  40. Carla, you and Chuck are an inspiration to all of us. Your message is truly eloquent, and it humbles me with the beauty of your thoughts and your overwhelming courage. Knowing you and Chuck has been a true blessing, and I so appreciate your description of what you have been going through. Thanks for sharing such a special time for both of you. Let’s plan on getting together in Omaha again when Vanderbilt baseball wins its next College World Series! You and Chuck are the best!

    Kevin Grady, Atlanta GA

  41. Carla, you continue to be a model — for your friends and for all who have followed your story — unique in grace, courage, wisdom, humor, and the absolute refusal to capitulate. You continue to be an educator seeking always to share the light with others; you continue to be an inspiration. Not to mention a damned fine writer. Kick butt, Carla.

    Don and Mary North, Vanderbilt U Class of ’69, Houston TX

  42. Carla and Chuck, as everyone above has stated, you are very much loved by all. I want you to know how much I have anticipated each time you shared your journey — your dance. You have tap danced into every day, week, month and year with such grace and dignity. So bless you and Chuck as you continue on. You are an inspiration as a woman, wife, mom, grandma, daughter, sister, friend, co-worker and unbelievable spirit. Our world is a better place because of you! Peace.

    Mary Ann O’Hara, Denver, CO

  43. Please know you are in my thoughts, Carla. Your grace and strength on this journey is an inspiration. Stay strong and keep living life to the fullest!

    Heather Paris, Boone IA

  44. Carla, may God be with you on this journey you are taking. Your words mean hope to the rest of us. I’m part of that “silent majority” that has read your columns and taken great joy from them. Your attitude is a lesson for all of us. Having been born in a home for unwed mothers, I view each day as a special blessing that God has given me. Growing up on a farm I understand your love for the earth and what it will produce. What a wonderful thing to plant a little seed, then a few days later a small green sprout pushes up through the soil. As the days pass, the stem develops with lots of green leaves. And then on the top of the stem, an absolutely beautiful flower opens to delight your senses. Eventually, the flower fades, however next year you can do it all again with warm memories of last year’s bloom. Carla, you are a wonderful person who has set an example and a goal for all of us. Enjoy what you can now. I think that is what God wants you to do. Daily prayers coming your way.

    Jim Ross Lightfoot, White Oak, TX

  45. Carla, I don’t think I’ve had the privilege of knowing you. I have met Chuck, who also knew my late son-in-law, Mark Wonderlin. But I, with my wife Janet, belong to Windsor Heights Lutheran Church, know your mother Sue Burt, and have seen all of you at church, and have joined in the congregation’s prayer for you — even as we pray for you now, in this next step of your journey. Glad you have good caregivers 24/7 available. Janet has Lewy body dementia, still functions pretty well, though with virtually no short-term memory (she tells me very often that she loves me!). We have caregivers from Home Instead six afternoons a week for two to four hours, so I can be out and about as I need to. Both of us are near 88 years old.

    Rev. George Hanusa, Des Moines

  46. Carla – your honest dialog is truly moving. Your comment about being “present” specifically struck me. That is something for which we should all strive. Continued prayers for you and Chuck.

    Chris Goodale, Indianola, IA

  47. Carla, thank you for sharing this. May the days, weeks, and months ahead of you and Chuck be some of the most loving and joyous that you share. I wish Denny and I were granted more of them, but I’ve never felt the loss of our connection. Every moment is a gift.

    Deborah Brewington, Nashville

  48. Carla, I have been remiss in sending this but wanted you to know you are always in my prayers. Just re-read this post and again you amaze me. Sending good thoughts your way today and everyday. I bet the lights on the tree made the first snow a welcome sight and brought that wonderful smile of yours to your face.

    Darlene Carlson

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