By CARLA OFFENBURGER
COOPER, Iowa, Feb. 13, 2017 — First, let me apologize for being silent these past two weeks in updating you on my current dance with cancer. I have literally been without words. It’s a dance marathon for sure. But here is what most comes to mind as I try to put into words how I’ve been feeling, thinking and reacting.
I have been tired, I have been scared. I have been anxious. I have been hopeful. I have been grateful to all of you for holding me up during this time. Your notes, your cards, your prayers are without end. I am very blessed.
Back when I first wrote about the adenoid cystic carcinoma (ACC) recurrence that has now invaded my pelvic and abdomen area, I got an email from my close friend Rev. Deb Griffin. She was minister at Central Christian Church in Jefferson when I was a member there. She now leads the Downtown Disciples in Des Moines. She wrote me the most touching message.
“I’ll be visualizing you dancing with God as I pray for you daily,” she wrote. “I don’t know if you ever danced on your dad’s feet or someone’s feet when you were a little girl, but that’s how I imagine you dancing through this cancer song; with your little feet, resting on God’s strong feet. God, your divine dance partner who knows all the steps, who hums the tune of healing love in your ear as you dance, calming your fear, holding you and carrying you around the dance floor. I will be praying as you dance. I love you.”
And that’s what I feel I’ve been doing these past few weeks – letting God be my divine dance partner, resting on God’s strong feet. I am now focusing on the tune of healing love God is humming in my ear as we dance together.
Now that a plan of action is starting to take shape, I feel ready to open up the dance floor again to all of you supporting me.
One of the mantras for Carla and Chuck Offenburger and most other cancer patients is “Hope.” Our niece Pam Watson Korbel in Colorado made this imaginative card for us, adding the hopeful inspirations from others.
As you might recall, I applied to be in the National Cancer Institute’s “MATCH” trial program, which would have given me the opportunity to be receive chemotherapy drugs that in some way or another aligned with the genetic make-up of my tumors. I didn’t get into that trial program. And while we waited for this unfortunate news, we also had to put off any other treatment as the trial required I had tumors of a certain size to be monitored.
Since we received this news a week or so ago, my husband Chuck Offenburger and I have been working closely with our oncologist Dr. Matthew Hill on what might be our next steps.
We didn’t sit idle during this time, however.
We travelled to New Melleray Abbey and visited with one of our spiritual mentors, the monk Father Jim O’Connor, who once again anointed me and prayed for my healing. He has done this many times over the past seven years during both of our battles with cancer. You can read about that and see some photos right here.
We met with, and scheduled an “ablation” procedure, with Dr. Olaf Kaufman, an intervention radiologist with Iowa Radiology in Des Moines, for February 14 – far enough out that we knew we’d have the answer about the trial – which would guide Dr. Kaufman on what tumors he could target.
So, Chuck and I will spend Valentine’s Day this week at Iowa Methodist Medical Center in Des Moines where Dr. Kaufman will be using long needles to “de-bulk” the tumors that seem most available for either freezing or radiating. While this procedure in no way rids me of my cancer, it at least will minimize the size of some tumors and give us a bit more time to determine what might be available for ongoing treatment.
As I have shared before, ACC doesn’t have a history of responding well to chemotherapy. It responds to being removed by surgery. However, the tumors I now have make surgery complicated and not a current option. The ablation is the alternative.
Dr. Hill has also arranged for, and I have been approved for, a chemotherapy drug that matches one of my tumor mutations that was discovered in late 2015 when we submitted samples of a tumor removed then from my liver to a cancer research program, “Foundation One.” This drug is waiting for me, should we opt for treatment with it. I feel especially blessed about this option because the cost of the Foundation One program, a recommendation that Dr. Hill made to us back then, was not covered by insurance. We were able to pay for the research, in part, with the generous financial gifts we received from some of Chuck’s Vanderbilt University 1969 classmates.
The Vanderbilt connection comes in again now, in a real roundabout way.
Chuck has been sharing my cancer journey via some heavy discussion and consultations with his Vandy classmate Dr. Steve Flohr, a semi-retired surgeon in Greeneville, Tennessee. Those conversations have now led us to the Vanderbilt Medical Center’s Ingram Cancer Center in Nashville. There is a physician there who has some patient and research experience with ACC.
After a long visit and discussion with Dr. Hill, we’ve decided that I’ll head to Nashville for a consultation with Dr. Barbara Murphy at Vanderbilt Health. I’ll take my test and research results and see if she might have an idea we’ve missed.
I have also been offered another national clinical trial that, while a bit rigorous, might be where we are headed. It is being directed in central Iowa by the partners in Dr. Hill’s oncology practice.
As his nurse Amber said the other day, “The stars are aligning for you.”
And if you are counting that’s four dance cards we’ve got ready: 1) ablation or “de-bulking,” 2) chemotherapy drug with the drug from the Foundation One trial, 3) consultation at Vanderbilt Health-Ingram Cancer Center, and 4) a second clinic trial possibility in Des Moines.
So here I am back on the dance floor – with a few dance partners. First and foremost, the best dancer of all – my feet are firmly planted on God’s feet and I’m letting him lead. Next, I’ve got Chuck. I can’t even begin to give him the credit he is due. My family, my friends – all of you.
Let’s get this dance party started.
Keep praying – for me and my ability to stay emotionally and physically strong. Pray for hope that we can make this a dance marathon. And pray for all those on my medical team that the treatment decisions made are the best available.
Oh, and one more thing – I’ve been invited, and Chuck will join me, to be on the Iowa Public Radio “Talk of Iowa” show this coming Friday, February 17 at 10 a.m. with host Charity Nebbe. Tune-in and hear how things went this week – and what is happening next. Besides the nitty-gritty details of this cancer journey, I’ll be talking about living with cancer – and that includes being grateful for all of you!
You can write the columnist by email at carla@Offenburger.com, or by using the handy form below here.