By CARLA OFFENBURGER
COOPER, Iowa, Jan. 5, 2017 – It’s time for us to have conversations about cancer. Again.
Yes, adenoid cystic carcinoma is apparently back, for a third time.
Go ahead and say whatever comes to mind. I already have. And now I have to move forward with it. Again.
Cancer is like a bad relative that I can’t break away from. She’s a pest that isn’t wanted. But she also appears to be a lifelong companion.
So, over the last 10 days, I have been reflecting on our cancer conversations from the past. They bring me strength in this time of uncertainty.
It’s been a bumpy holiday for us Offenburgers.
As all cancer survivors know, you don’t forget the dates, times and places that you receive the news you don’t want to hear. And you don’t forget the details.
Chuck and Carla Offenburger have had a lot of experiences as cancer patients — probably even more good moments than there have been bad moments. Here was a good one this past September when the Des Moines-based organization Above & Beyond Cancer presented them with their annual Cancer Survivors Recognition award. You can read the citation that came with the award at the bottom of this column.
My routine December check-up with oncologist Dr. Matthew Hill included labwork, an ultrasound and a chest X-ray – different from my previous 2016 check-ups that included a CT scan. The goal was to eliminate some exposure to radiation, knowing we could see what we were looking for in an ultra-sound, X-rays and labwork, and go from there if necessary.
The minute Dr. Hill walked into the exam room, I knew the news wasn’t good. That was on Dec. 20. A spot on my liver looked suspicious. Then a CT scan, which I had the next day, showed more than a spot on my liver. There were seven spots showing up in the mesentery in my pelvic region. The call with these results came at 5:06 p.m. when I was standing in front of the orange juice section of our local Fareway Grocery.
I was speechless. Shell-shocked. And pissed off!
The holidays being so close complicated the ordering and scheduling of a follow-up PET scan that was now necessary.
Can I interrupt this important message to complain about the pre-authorization process? Seriously. An oncologist places an order for a cancer survivor, as part of a follow-up to cancer screening tests with bad signs, and it takes over 12 hours to get a pre-authorization? Where are the “red flag orders”?
Chuck and I started the Christmas holiday by sharing the frightening news to just immediate family and a few close friends. Then we insisted it not be mentioned again so we could enjoy the holiday visit from our son Andrew Offenburger, his wife Maria and our three granddaughters Lindsay, Casey and Audrey. We had a wonderful jam-packed Christmas celebration that went on six days.
On Tuesday, Dec. 27, within an hour of the girls and their parents leaving the farm, I was on the phone trying to see why a PET scan wasn’t scheduled yet. Dr. Hill’s staff got on it immediately, but with the New Year holiday extending thru Monday, Jan. 2, the PET scan couldn’t be scheduled until Tuesday, Jan. 3, at John Stoddard Cancer Center at Iowa Methodist Medical Center in Des Moines. By 9 o’clock Tuesday night, I had a message from Dr. Hill indicating that the PET scan showed:
–a small, likely-cancerous mass within the inferolateral margin of the left lobe of the liver;
–a small “nodule” abutting the diaphragm, questionable for “early recurrent disease”;
–and a 1.6-inch area in the left uterine area that needs to be checked for possible pelvic cancer.
The good news? There is no sign of disease elsewhere, including in my head, lungs, heart and other organs. Yippee! Seriously.
Life can turn on a dime, you know?
I reached for chocolate!
Did you all know I’m claustrophobic? That makes all this scanning business quite stressful for me. An MRI is almost out of the question. Honestlly, part of me now believes the worst is over, if they don’t make me get in another tube.
Here’s the plan right now. Liver surgeon Dr. Qasim Chaudhry is sharing my report with the “Tumor Board” of consulting cancer physicians at Iowa Methodist, who know my internals very well by now. The discussion will probably include surgical removal of the tumors, since adenoid cystic carcinoma just doesn’t have a history of responding to chemotherapy.
If removal is the next step, this will be my third time having it done. First a golf-ball-sized tumor was removed from my lower jaw/throat area in 2010. Then in the fall of 2015, a 6-pound tumor, 60 percent of my liver and my gall bladder were removed by Dr Chaudhry.
I’m scheduled for a biopsy on Monday, Jan. 9, which will confirm the preliminary news – or some kind of miracle.
We’ll pray for the latter and prepare for the former. Because we also know this: We’ll handle this go ’round just like we’ve handled the others – full throttle, doing exactly what they tell us to do, and doing it all as quickly as possible.
So right now, our house is a whirlwind. What might we be missing? What should we do in preparation? What will the next several weeks or months be like?
In 2010, after neck surgery, I did six weeks of radiation as an extra measure to eliminate any lingering cancer cells near my brain stem. In 2015, I was recovering for nearly seven weeks after Dr. Chaudhry removed that tumor which was so large that his physician pals were kidding him that it was almost like an obstetrical procedure.
What will happen this time is still up in the air.
And thus, our cancer conversations in the past are all replaying in my mind right now.
A very recent one is almost eerie. On Friday, Dec. 9, we attended the funeral in Des Moines of our longtime friend Lauren Smith who had a long “dance with cancer,” as she often put it. At the funeral luncheon, I was talking to another cancer survivor about my upcoming check-up with the ultra-sound and X-rays. I affectionately used the term “scanxiety” – a term Lauren loaned me years ago. When the discussion turned to how we deal with this scanxiety, I said, “We have a great role model in Lauren, and I always try to remember her advice and her attitude.”
So now I am trying to keep the attitude of a woman who’s “optimism touched the lives of so many…,” according to her obituary. I need her optimism now, for sure.
Another past conversation that comes to mind again is one with cancer survivor Stephanie Cook Stockton, who grew up in Shenandoah with my husband Chuck. In 2010 she told me “when things get tough, just close your eyes and picture all the people who are praying for you.” Stephanie said, “It really helps!” She also suggested, “When you get so sick or tired, or whiney and just don’t feel like praying, know that someone else is carrying you through!” I’m going to keep that in mind this go ’round, too.
Earlier this year on Sept. 30, Chuck and I were honored by the “Above & Beyond Cancer” organization with their annual Cancer Survivor Recognition award. This wonderful program is under the leadership of radiation oncologist and adventurer Dr. Richard Deming.
Dr. Deming, who talked briefly at the presentation, shared that he understands why so many cancer patients use terms like being a “warrior” and “battling” cancer. But he said his aim, with “Above & Beyond Cancer,” is to “transcend cancer.” They believe in a “mind, body, spirit approach.” Certainly there must be treatment, even aggressive treatment. But they also encourage cancer patients – at any stage of the disease – to live lives of purpose and passion. Right now as I write, Dr. Deming is leading 32 cancer survivors and caregivers on another of the organization’s cancer-transcendent adventures, to Kenya and Tanzania in Africa. First in Kenya, they will build a “Hope Lodge” where people can live while receiving cancer treatment. Then they’ll go to Tanzania to climb Mount Kilimanjaro for fun and inspiration.
Now, in the past I have said I will battle this disease, or that I will be a warrior. But this go ’round, I think, I’m going to look to Lauren Smith and Dr. Deming and dance this round through. I’m not a great dancer, but I think I have a “mind, body, spirit” mentality, and my cancer is actually a slow dancer. And honestly, when I slow dance, I have a tendency to want to lead.
So help me lead this dance, by sending your prayers my way. Chuck and I could use them right now. It’s always more fun to dance on a full dance floor – so be our partners in this go ’round, please.
Let me close by sharing two important messages I’ve just received.
Sharon Stalder, of Jefferson, a three-time cancer survivor and leader of our Greene County Cancer Support Group, wrote this:
Just opened this email with your news and offered this prayer immediately: “Great Physician, architect of our body, we lift up the physical concerns of Carla and ask that you guide Carla’s medical team by giving them wisdom and knowledge. Grant Carla and Chuck peace, strength and courage as they battle this current concern together.” May you know His presence. With HOPE, Sharon.
Rev. David Telfort, one of my pastors at Plymouth Congregational Church in Des Moines, wrote this:
I know you both know at this point what to do and how to go about your care. We’re here as an added layering of support and encouragement. You are loved and we’re here to help in any way you may need. I’m an email or phone call away. Praying with you. David.
I feel His presence. And I am loved.
Thank you for praying with me and being one of those who loves me.
There’s one thing about the way we’ll do this new dance with cancer that will be similar to what we’ve done in the past – we’ll be keeping you informed with messages, blogs and posts. Taking the journey with those we love is the only way we know how to do this.
You can write the columnist at carla@Offenburger.com or comment using the handy form below here.
When we Offenburgers were presented a Cancer Survivors Recognition by Dr. Richard Deming and his Above & Beyond Cancer organization in September in Des Moines, this was the citation:
“Iowa writers & bicyclists Chuck & Carla Offenburger, who live on the Raccoon River Valley Trail near Cooper (pop. 30) in southern Greene County, since 2009 have thrown themselves into what they call a ‘tag-team cancer’ fight. Chuck has been through two rounds of lymphoma and a stem cells transplant. Carla, who is community relations director at Greene County Medical Center in Jefferson, has been through two rounds of adenoid cystic carcinoma. They’ve leaned on and pushed each other through chemo, radiation, surgery, CT & PET scans, MRIs and more. All that has given them a firm resolve to ‘pay it forward,’ help others and love every minute of life they get.”
You can learn more about Above & Beyond Cancer right here: https://aboveandbeyondcancer.org.