By CARLA OFFENBURGER
COOPER, Iowa, Oct. 12, 2019 — What a summer. Thank goodness for October. I’ve always thought October was the perfect month for rest and rejuvenation. The weather is nearly perfect and there’s still plenty of time not to think about the upcoming holiday season.
I changed my life significantly at the end of August when I finally took the advice of my oncologist, Dr. Matthew Hill, and took a permanent medical leave from my job as Community Relations Director at Greene County Medical Center. He suggested this back in June when my scan then was showing more cancer, I was showing more signs of fatigue and we needed to come up with a plan that might buy me some more time.
It was a difficult decision. I loved my job and the people I worked with. But I wasn’t able to give 100 percent, maybe less than 50 percent if I was honest. And my health was suffering because of it. You need all the strength you can muster when you are battling adenoid cystic carcinoma, like I am. You need to use every ounce of energy on the disease. That became clear to me, ACC was taking its toll on me – physically, mentally, and emotionally too, I’d guess.
Carl Behne, the CEO of Greene County Medical Center and thus Carla’s former boss, wishing her well at a party saluting her career.
It was the right decision. I need more rest time. I need to focus on keeping the constant pain to a minimum, which meant increasing the pain meds I am taking. I needed to have the time to do what procedures and medical miracles are still available to me.
And those procedures and medical miracles are few for sure. The first thing I did was have Dr. Olaf Kaufman do his fourth ablation on me. This time it was on three tumors on the top of my liver. Earlier this year he removed a tumor on my spleen and then, at another time, he removed one on my back. But they just keep reappearing. Damnit.
This latest procedure really turned out to be rough on me. I have been slow to recover if I use past recovery experiences as my model. I have been very fatigued, avoided many an outing and basically have been trying to gain strength. That hasn’t been as easy as I thought, but I am also battling loss of appetite and subsequently, what I would call extreme weight loss.
So Dr. Hill was right, I needed to concentrate on my health. And I am.
It’s especially important now, because Dr. Hill started me on an immunotherapy regimen just this week. Maybe I’ve been watching too much college football, but this therapy treatment is a “Hail Mary” for me. I pray my receiver catches this ball.
Carla, as she opened up the shipment of the immunotherapy drug Nexavar.
If so, I will do this as long as it works, and its side-effects are tolerable. What side effects? Basically the list looks similar to the list I had when I did try a chemotherapy drug in 2017 (that, obviously did not work at all). Upset stomach, loss of appetite, diarrhea, blisters on feet and/or hands, rash on face, loss of hair, and on and on and on. There’s no need to dwell on that right now.
It was Wednesday, October 9 that I started taking four pills a day, about the size of an aspirin. This drug is called Nexavar, and according to my insurance explanation of benefits (EOB), has a price tag of $40,000 for 120 pills. Ye gods!
I also had a scan this week so that we have an accurate “baseline” to monitor tumor growth moving forward. If it works, my tumors will not grow. They basically will become dormant.
Chuck and I asked Dr. Hill to clarify the difference between an immunotherapy treatment and a chemotherapy treatment. Here’s my simplified patient explanation:
Immunotherapy enters your body and “slowly” inhibits the growth of tumors and prevents new ones from beginning. It basically enters the cancer dance floor and says, “Sorry, full. No more.” And then guards the door.
Chemotherapy, which is generally much rougher, enters the body like a bouncer and says “Out. Now.” And the cancer tumors are gone, if successful.
Dr. Matt Hill and Carla.
The best I can hope for is that the many tumors I have will stay just as they are now. And that’s many, folks. My September scan showed new tumors in my lungs, my lower abdomen, my spleen, liver, my left and right femur and lower right hip bone. That’s a lot! Ugh.
The liver tumors are what Dr. Kaufman ablated in mid-September. And while ablation is a nice option at times, it will become less and less successful – mainly because, well, my body is wearing down.
While all this could certainly seem like doom and gloom — it is — my approach is to focus on the possibility for success, rather than the possibility of failure. It’s ridiculous and serves no purpose to be a naysayer here.
I will be checking in with Dr. Hill every 30 days now, but it won’t be until December that we see if the Nexavar is working. In the meantime, twice a day, I will take my immunotherapy drug, try to maintain my weight, and stay as healthy as possible. I’ll also hope that side-effects are minimal and pray that it all works in my favor.
Pray with me, please.
You can write the columnist by email at carla@Offenburger.com or comment by using the handy form below here.
The end-of-career party for Carla was held on Aug. 30 at the farm home of our friends and neighbors, Karen and Doug Lawton. Here were the chief party organizers, Carla’s sister Chris Woods of Des Moines and Karen Lawton.
One of Carla’s favorite avocations through her career has been mentoring young women. Two of them were together at Carla’s party. Emily Brewer Ressler (left) worked for Carla in Community Relations at the Greene County Medical Center for seven years before she left in late August to get married and re-settle in Kansas City. Carla and Emily worked together in training Emily’s replacement, Sydney Bishop (right).
Prayers that the immunotherapy works for you. You are certainly strong and positive, and I have heard some people say that cancer hates those positive vibes. It is never easy to slow down and rest but you know you need to take care of you. Prayers for your doctors in continuing to discern what treatments and drugs are best for you. And, finally, prayers for all who love and support you as give this fight all you’ve got.
Cathy Barnett
Prayers for you.
Barbara Cunningham, Shenandoah IA
Carla,
You have a wonderful attitude following whatever is asked of you.
Rick and I pray your tumors will shrink and no new ones will appear in your body.
Sending you courage as you fight the fight.
Sending love and prayers that your strength and positive battle plan along with immunotherapy give your body relief and steadies your course towards better health.
Barb M-B
Sending love and prayers that your strength and positive battle plan, along with immunotherapy, give your body relief and steadies your course towards better health.
Barb Madden-Bittle, Des Moines
My prayers are that your new therapy is successful, Carla.
Kay Austin
Thanks for the update, Carla. You are such an inspiration to us all and your positive attitude has already taken you a long way. So keep it up as best you can and take care of yourself. Prayers will continue on this end. One day at a time, my friend.
Kathy Mathews, West Des Moines
Carla, I don’t know you very well and we have met only a couple of times. However, I’m sure you know Chuck and I were childhood friends all the way through high school, and I used to babysit Chris! He was very lucky when he found you, and I so admire your strength and determination. My best to both of you as you continue to fight this battle. Don’t forget Florida!
Karen Chesshire Ray
Prayers for you, Carla. You are such a lucid, brave person and an inspiration to all.
Harriet Rochefort, Paris, France
Carla you are one tough fighter in the battle and that’s what it takes to win! I am so proud of you and your positive attitude. I remain your 6:30 prayer warrior. Hugs to you!
Lois Clark, Jefferson IA
You remain in my thoughts and prayers, Carla. I love you.
Diane Navin, Des Moines
Thank you for sharing. May October be kind to you.
Judy Brooks, Ames IA
Continuing to lift you up in prayer. You’re a fighter!
Gina Kaufman, Robins IA
Carla you constantly amaze me with your positive attitude. . This has to be so beneficial. I will keep you in my prayers as always and pray the immunotherapy will work good for you. I hope those side affects will be minimal. Take care, let your body rest.
You are strong and mighty on this journey called life. Thank you for sharing your story. My prayers continue.
Carla, thank you for sharing your update with us. You are such an inspiration to many many people. You are always in our hearts and prayers❣
Cindy Jensen, West Des Moines
Prayers and best wishes, Carla!
Jim Cullen, Austin TX
You have always been in our prayers and will continue to do so. Your outlook is terrific and hopefully will be an advantage in the success of this new treatment.
Lois & Sam Kauffman, Audubon IA
Carla, prayers are happening here in Birmingham for you. Peace.
Caryl Privett in Alabama
You have been through so much, Carla, and still have such a positive attitude. Know that our prayers continue for you and Chuck as you try this next option.
Peg Raney, Jefferson IA
Praying for you as you keep on fighting! You are quite a warrior and a wonderful example for all of us. Praying the new drugs are successful in your life’s journey!
Janet Durlam, Jefferson IA
Prayers for you and Chuck on our list everyday. Continue to be strong. You have such a great attitude about this. We pray the Nexavar works.
Ronna O’Brien, Boone IA
Thinking of you, Carla. Definitely in our thoughts and prayers. Hang in there and stay tuff.
Ruth Glick and Bill Hamilton, Des Moines
May the fall season bring you the sacred rest you need, and bring restoration for every felt weakness. I hope you find peace and contentment as the immunotherapy works its miracle, and that you find your mind, body, and spirit renewed.
Kimberly Noble Piper
My thoughts and prayers are with you. Wishing lots more healthy days to enjoy the change of seasons and the beautiful fall days.
Juli Haberer
Sending prayers, Carla!
Chris Nolte, Winterset IA
Prayers continue for you Carla! Love your positivity. I believe it makes such a difference in your difficult journey. Prayers for all of your support team also. Enjoy the beautiful fall.
Sherri Little
I have a drawer full of medals I could give for your bravery and can-do positive sttitude! You are amazing, Carla! Praying the immunotherapy wins this war with cancer ! God bless you and Chuck.
Dave Bayless, Des Moines
There you go again, that smile in your pics. No wonder you are surrounded by so many with an abundance of love, care and prayers for you.
Darlene Carlson
Think of you and Chuck hourly withlove and admiration. am grateful for all your friends who Reply to your wonderful writings. We hold the out in our Centerville hearts.
I find all kinds of words to say when I pray (which I do often) for your treatment path to bring healing and relief. However, this column you’ve written leaves me speechless. As you carry on your fight with this dreaded disease, ACC specifically, your village will continue to circle round you to give you a helping hand in whatever way we can. Wishing I could do more. So arms about you as you travel to Nashville and Oxford. Safe travels and know you are loved by many and we’re all praying for the immunotherapy drugs to work! You’re my (s)hero.
Mary Riche, Des Moines
Prayers continue to you and Chuck. Your updates give hope to many. God bless you.
Neal and Caroline Hoyt, Scranton IA
Thank you for your inspirational words! Your optimism laced with wherever reality takes you models how I want to live. Blessings on you and Chuck today and always. Love and prayers.
Friend,
Wes Smith
Smithfield, VA
Hi Carla. So sorry to hear cancer update but that “Damn Cancer” will never,ever wipe that beautiful smile off your face! Continued prayers! Love you both.
Dick and Carol Hensley, Atlantic IA
Thank you for sharing this chapter in your story. You are courageous, but how else would you be? You are an inspiration to so many people. I’ll keep you in my thoughts.
Clara G. Hoover
Brava Carla! On this column and on the devastating journey it describes! Reading this reminded me of a Robert Frost poem. I trust it will resonate with you:
The rain to the wind said,
“You push and I’ll pelt.”
They so smote the garden bed
That the flowers actually knelt,
And lay lodged — though not dead.
I know how the flowers felt.
Kathleen Murrin, Des Moines
Carla and Chuck, you inspire all with your positive outlook at Cancer Support Group meetings and sharing your walk with cancer. Norman Vincent Peale’s “Power of Positive Thinking” book describes you and it still holds me up since my mom Gwen Alcorn Knigge gave it to me at age 18. Please keep inspiring us with your messages.
Lois McAtee, Jefferson IA
Praying for you.
Beth Jordan
Carla and Chuck, you are in our prayers as a community at Windsor Heights Lutheran Church and in my personal prayers.
Carol Wiss Huisman, Des Moines
Carla, I have been reading of your journey, your dance, and have been praying for you and Chuck for some time. You continue to inspire me with your positive outlook, and courage. Blessings.
Lin Jacobsen
Thinking about you and praying.
Continued prayers from North Carolina.
Brandon Sherer