“Emotional and mental roller coaster ride” is really testing Carla

By CARLA OFFENBURGER

COOPER, Iowa, May 2, 2020 — This is way overdue and I apologize to all of you who follow my health updates. It was in January when I gave you my last update – four months ago.

What have I been doing? I told you in January that I got a feeding tube and was preparing for three weeks of radiation on my pelvic area.

And here we are, and it’s the start of May.

Folks, the month of February and some of March was the worst stretch thus far of my 10-year journey with adenoid cystic carcinoma cancer.

I was sick beyond sick. I can’t even remember some of it. But this is what I do know – the three weeks of radiation I had in February to reduce the size of the tumor in my pelvic area (which did work) was brutal to my bowels. I had the worst diarrhea I’ve ever experienced. Day. After. Day. For nearly four weeks. Two weeks of that was while I was travelling to Des Moines every day for radiation. I couldn’t sleep, was incredibly weak and couldn’t get my bowels under control. For the most part, I was nearly bedridden and always close to the bathroom.

The situation was so bad that I had to replenish my body with potassium twice, with daylong visits to the oncology department at Greene County Medical Center in Jefferson for potassium infusions.

Carla on new screened porch wideshot.jpg

Carla Offenburger, shown here Friday, May 1, sitting on the newly-rebuilt and screened front porch at our Simple Serenity Farm outside Cooper in west central Iowa.

I was slow to any type of recovery, but now find myself in a better place. I am up, reading, quilting, doing puzzles and walking on the trail when possible. My bowels are pretty much under control and I continue with the feeding tube to sustain me with necessary nutrients, which literally has been my lifeline lately.

I went from a dire situation in February and March to finally feeling like I was beginning to think I might want to get out & about, and then BAM! The corona virus overwhelmed us all.

When I had my March 17 scan follow-up appointment with my oncologist Dr. Matthew Hill at John Stoddard Cancer Center in Des Moines, he was adamant that I needed to start self-quarantining immediately, as a precaution.  And I have been since March 17. Nowhere for me. Good thing I like my housemates and the things I can do here.

My poor condition and then the quarantining to avoid the corona virus made two important things impossible. We had planned a trip to Arizona in mid-February to visit step-daughter Janae Jaynes-Learned and her husband Chris Learned, to watch Vanderbilt baseball in a season-opening 4-team tournament at one of the Major League Baseball spring training stadiums. And then in March, son Andrew Offenburger and his wife Maria Offenburger, of Oxford, Ohio, were going to bring our granddaughters Lindsay, Casey and Audrey to the farm for spring break. This was to take place right when we Iowans were asked to stay home, but in Ohio, they were being told to stay home except for essential needs.

Having to cancel both of these was devastating to me emotionally and mentally. I look forward to what is always happening next in my life, and when these big events get cancelled it really puts me in a funk. And while Vandy baseball has been cancelled for the season now, a visit from the girls is a high priority for all of us once we feel that is manageable with the current virus situation.

And it doesn’t go unnoticed by me that my complaining and whining about what the corona virus has done to my life is nothing to how it has impacted others. I pray daily for all of those who are on the front lines, who are risking their lives every day for some of us to be going out and about. And I pray for those who have lost a loved one, or who are losing the battle themselves. Life is precious, folks. We should take care of it better.

Back to March 17. That appointment was my regular, 90-day scan and review, checking how my immunotherapy drug, Nexavar, is working and how my radiation treatment in February worked on the tumor in my pelvic area. Overall we were happy with the results.

The Nexavar continues to limit all my present tumors growing at a slow rate. Dr. Hill says growth over 20 percent, from one scan to the next, would indicate the drug has stopped working. My tumor growth was minimal. Also, the tumor in my pelvic area showed a significant decrease in size. It was softball size and now is baseball size. It could still be “dying,” so may shrink more. That’s our hope. The best news is that it is small enough now not to be interfering with my bowels or bladder. And I have no back pain there now. This has made a big difference in my day-to-day movement and that makes me more active – and happier.

There’s always, the “however” with these reports, and Dr. Hill had one of those, too.

There is a new “thickening” mass at the bottom of my right lung, which is most likely cancerous. There are also the numerous tumors in my right lung that we’ve already been aware of, but still, those all remain small enough not to be “an immediate concern.” The new mass in the lung also comes with some fluid at the bottom of my right lung. Dr. Hill says we will continue to monitor both, and if the fluid level becomes threatening, it can be drained. The tumors, as is always the case, will be the bigger problem.

It’s this lung issue that made Dr. Hill so adamant about quarantining myself. My lung situation puts me at a higher risk. Staying isolated is the only thing to do. And keeping Chuck on top of his game when it comes to buying groceries, picking up prescriptions and running other errands is important. You can bet we have gloves, masks, sanitizer and diligence here.

In April, I had another follow-up appointment with Dr. Hill via “telehealth,” which was interesting. I had to report that I had not gained any weight, which has consistently hovered at just over 100 pounds — up to 105. He made it clear that I will remain eating with the feeding tube, four times daily, with the goal still that I gain more weight. Dr. Hill did say that 16 to 29 percent of patients taking Nexavar lose their appetite. I must be in that percentage range, because I literally have no desire to eat anything of any substance. I like popsicles, Jello, fruit and some desserts.

Carla & Tony dinner - Emily photoshop.jpg

Carla and our brother-in-law Tony Woods, of Des Moines, are both undergoing cancer treatment and for now, both are eating by using feeding tubes that takes thick liquid nutrition from the elevated bags, down through the tubes and directly into their stomachs.  Here they were while they were sharing Sunday dinner at our farmhouse on April 26.

Eating just to sustain myself doesn’t allow me much opportunity to gain strength. And I could certainly use that. I’d like to work in my yard a little, and be a bit more physically active, but honestly, writing this column will wear me out for the day.

Also at that April appointment, we decided to do mid-May 60-day scans and evaluate again how the Nexavar is now working. This time, I’ll do the CT scan and a bone scan, and I haven’t had a bone scan since last fall.

It’s always just a matter of monitoring what Nexavar is doing or isn’t doing. And that’s all we’ve got.

It’s all becoming a bit of an emotional and mental roller coaster ride. And I don’t like roller coasters.

I’m doing my best to stay positive and motivated, but sometimes I just find myself disappointed in my progress. It’s one step forward, two steps back. All the time.

I found comfort this week while reading my “go to” cancer book, “50 Days of Hope” by Lyn Eib. She reminded me that, “It’s all right – questions, pain, and stabbing anger can be poured out to the Infinite One and He will not be damaged…for we beat on His chest from within the circle of his arms.” She asks me, “Can you visualize that for yourself – you crying out to God, beating your clenched fists upon His chest, while He is holding you in His loving arms?” I can, thank God.

What I find strength and hope in, is all of you – praying for me, cheering for me, asking about me. Keep caring, please. And keep praying.

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

24 thoughts on ““Emotional and mental roller coaster ride” is really testing Carla

  1. I’ve been praying and thinking of you and glad you wrote with an update! Praying for your continued courage and strength to fight this battle.

    Debra Carle, Des Moines

  2. Carla, you are an amazing inspiration to so many! I love your honesty, your courage, your faith, your perseverance, and your willingness to share your journey with us. I will be praying that your next check up holds great news for you. And I will pray that your family’s visit to you will happen soon!

    Cindy Jensen, West Des Moines

  3. Carla thanks for the update. Hoping and with prayers you gain strength.

    Johnny Turpin, Jefferson IA

  4. Oh what you have been going through, Carla. Thank you so much for sharing. I have the 6:30 prayers going for you and want you to feel strength and love.

    Lois Clark, Jefferson IA

  5. Carla, what a roller coaster ride you have been on. I feel for your suffering, understand your feelings of discouragement and admire your faith and strength. I pray that your next check-up will bring good news. And I hope that you will be able to have the joy of family visits soon.

    Harriet Welty Rochefort, Paris, France

  6. Thanks for the update Carla, cannot imagine what you have been going through. We keep you in our daily prayers and send hugs.

    Robyn Stokstad, Des Moines

  7. You and all around you are amazing! Continuing prayers ❤️.

    Phyllis Fitzpatrick, Des Moines

  8. Carla, thank you for sharing. I think of you often and continue praying for strength, peace and comfort. I know for me the spring weather lifts my spirit. I love seeing you enjoying your beautiful new porch and the sunshine. Hugs from your forever friend.♥️

    Diane Watsabaugh, Des Moines

  9. You are simply amazing, and a hero to all of us. God bless you, Carla and Chuck. Hoping and praying for the best!

    Dave Bayless, Des Moines

  10. You are in my thoughts and always in my prayers. He has a way of shining his light in so many different ways. Keep finding your light, Carla, and thank you for sharing it with us! You are amazing for sure! And as always, I love your smile!

    Darlene Carlson

  11. Carla, we are constantly thinking of you and lifting your needs to the Father. He sees you! He loves you! Thank you for sharing your heart in this way. It helps me have perspective. So glad you have your new screened-in porch to enjoy this spring. I sure hope the weather stays nice and springy for a while longer! Much love from the Southern Polks!

    Lisa Polk, Lexington SC

  12. Hi, Carla. Thanks for the update. I have been thinking and praying for you and Chuck. I hope you continue to stay strong and positive. You are such a fighter and I admire your upbeat attitude even though it has to be hard. Just know I am hoping the best on your tests results and keeping your weight up! Continue to work hard and keep the Faith.

    Leslee Oziah, St. Louis

  13. Softball’s OK, Carla, but baseball is better. How about marbles, or BBs?

    Rick Morain, Jefferson IA

  14. Amen, sister, amen. ‘Nuff said for now. Other than to say again, that my prayers for you are daily and my love for you is constant.

    Mary Riche, Des Moines

  15. It was so good to have you be in the Zoom book club evening. Your emotional strength is amazing and your contributions to our book discussions are always spot on.

    Fondly, Mary Hilliard, Des Moines

  16. Carla: It’s so good to “see” you again. Thanks for writing about your experience and activities. You are always so positive and encouraging. Your new porch looks great and will become your favorite place in the house. Thinking of you.

    Clara Hoover, Omaha, NE

  17. A big hug for you from Indiana. Thank you for the update, and thanks for you! You lift up so many others with your words. Praying for you and Chuck.

    Dr. Mark Hilton, Lafayette IN (“Dr. Pie,” when RAGBRAI’s first pie judge)

  18. Carla, you and Chuck are true inspirations. I admire your courage and candor and am praying and pulling for you in your recovery. Just think of that cancer as the University of Tennessee, and you know what Chuck and all of us think of U.T.

    Kevin Grady, Atlanta GA

  19. Hang in there Carla! You inspire us all with your determination and courage.

    Steve Caviness, Germantown TN

  20. Carla, thanks for the update, I think of you often, checking the website. I wish the news was better, but your attitude could not be. I’ll keep you and your caretaker(s) in my prayers.

    Joan Hakes, North Liberty IA

  21. Carla, I don’t like roller coasters either, but how I admire you and Chuck for hanging on through the toughest of times. Your soul shines as brightly as your smile, which I remember so well from the Vandy reunion last fall. Please know that both Dave and I are thinking of you and praying for you.

    Peggy Glascoff, Denver CO

  22. Carla, thank you for the update. I’m praying for continued improvement for you. I know the COVID-19 situation makes things all the more challenging for you and your family. You continue to inspire me. I hope for more steps forward and fewer backward for you.

    Diane Benoit, Des Moines

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