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).