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 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 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.