By CARLA OFFENBURGER
COOPER, Iowa, Dec. 30, 2018 — I write this column from our farmhouse living room, where I’m also admiring the most perfect Christmas tree. Seriously, the best one ever. It has ornaments that tell my whole life story – going clear back to my childhood and through the years of the best marriage one could ask for. Chuck and I have been collecting ornaments from all of our travels and adventures. I admire my tree almost every night in the darkness with the lights flashing. I may keep it up ’til Easter this year!
I love December when I can put up my large snowman collection and decorate our Christmas tree with these ornaments that remind us of our life’s journey.
But, December also brings another of my 90-day cancer check-up scans and follow-up appointment with my oncologist Dr. Matt Hill at Iowa Methodist Medical Center’s John Stoddard Cancer Center in Des Moines. That makes it a time when I am filled with joy for the holiday, but also anxious and nervous. This year was no different.
A lot of Carla Offenburger’s memory making in recent years has involved granddaughters Lindsay, Casey and Audrey — shown here during a pie-baking session last May.
We were very relieved that the report was as favorable as it was. “Favorable” is the word Chuck used when he wrote our family members about the results. I love the word – it’s so positive and hopeful. I love his optimism. It’s good for me.
His message, also said, “Yes, Carla still has more than one person’s share of suspicious nodules, spots and tumors, including a new spot in/on the spleen and another one on a lower vertebrae, neither of those two being fully-formed yet.”
My “share” of suspicious nodules, spots and tumors are basically throughout the trunk of my body – in my liver, my diaphragm, my abdomen, my lungs. It’s hard to count them all, but at least they’re small.
That would be enough to scare anybody, but by now I understand cancer pretty well and that helps me deal with the fear.
Dr. Hill reported that in addition to the new spots, which appear to be no concern right now, there’s been only a little growth, but not a significant amount of change in the last 90 days. Actually, that means in the last six months, since my August scan was a favorable one, too. And that’s the blessing with a cancer like adenoid cystic carcinoma (ACC) – it is very slow-growing.
The plan has always been to stay healthy and hopeful, and then deal with tumors when they begin to interfere with other organs or are threatening my general good health. I am so asymptomatic, that most folks would never guess I’m full-up with cancer.
Dr. Hill expressed concern about one tumor in my right lung that has grown to just under an inch in diameter. He felt we should look into spot-radiation for this tumor before it became a bigger problem. The other tumors in my lungs are very small.
So he consulted with his colleague Dr. John Triantafyllos, a radiation oncologist at the cancer center, who checked the scan and said radiation now would be wise.
Dr. Triantafyllos, who introduced himself to us last Friday as “Dr. T,” put us at ease almost immediately when he said, “You’ve been through a lot of crap!” And then we reviewed all the procedures I have had to keep this slow-growing cancer at bay – all the way back to early 2010. It wore me out just remembering it all. Our discussion included:
–I was initially diagnosed in the spring of 2010 and had neck surgery to remove a golf-ball sized tumor in my lower jaw, just above my throat.
–In the summer of 2010, I underwent 28 days of radiation to make sure there were no lingering cancer cells around my brain stem.
–I was clear for the next five years.
–In the fall of 2015, I had 60 percent of my liver removed due to a 6-pound cancerous tumor, diagnosed after I complained about a back ache that wouldn’t go away.
–In December of 2016, a scan determined the cancer was back.
–In early 2017, I visited an ACC specialist at Vanderbilt University Medical Center in Nashville. She basically told me that there is no cure for ACC, only treatment when appropriate, and she said I’m receiving excellent care from Dr. Hill.
–I had three abdominal tumors ablated in a long-needle procedure in February of 2017.
–I did 90 days of oral chemotherapy in the spring and summer of 2017, with painful blisters on my fingers and toes and other side effects. It was unsuccessful.
–I had another surgery in the fall of 2017 to remove multiple tumors from my abdomen.
–In December of 2017 we found out the cancer had moved into my lungs.
–And then in late August of 2018, I was back in surgery for more tumor removal in my pelvic area.
Dr. Steven Elg and his nurse Darla are shown with Carla after the surgery late last summer.
Does that wear you out, too? That’s why we who have the disease say we are “battling cancer.” I’ve always tried to say I’m “dancing” with it. But wow, would I love a new dance partner!
But let’s look ahead.
For the third year in a row, I will meet my health insurance’s annual out-of-pocket and deductible expenses by mid-January. I’m not sure if that’s a relief or a burden.
On January 8, I will be scanned and prepped for the actual radiation that will begin the following week, on January 15. For four days in a row I will have intense “spot radiation” to eliminate or slow down the larger tumor in my right lung.
Overall though, Dr. Hill, Chuck and I, and now Dr. T, are all in agreement. This is a slow growing cancer so we aren’t going to do treatments that will make me sick, when the cancer isn’t impacting my health yet. We already know that chemo will not stop this cancer and only beat me up. Most likely, I’m in for bits of spot radiation, maybe ablations, possibly more surgery, when the docs think it would be helpful.
In the meantime, we continue to hope and pray for some research break-through that would provide a cure for ACC.
It won’t be until my next 90-day scan in March that we will know if the spot radiation was successful. And that’s when we will know what the other tumors are doing as well. Then we will continue to monitor every 90 days, and do what seems most appropriate at the time.
There’s no other way than to feel blessed with this.
I am blessed to have a supportive and extremely positive husband in Chuck, loving and supportive family, and friends to help me work through the low spots and celebrate the high ones. I am blessed to have experienced many wonderful memory-making things between all my cancer treatments. I am blessed to be so healthy, as ironic as it sounds.
I’m going to continue to do what I’ve been doing since I was told this cancer will eventually take my life. I’m hopeful that I have years in front of me to live each day to the fullest, to make memories with those I love, and to pray daily for strength, courage, health and healing.
I want to enjoy all that I can, working hard to stay healthy and taking this journey one 90 day scan at a time.
And I feel truly blessed knowing all of you are praying for me. Please don’t stop.
Carla’s Christmas tree this holiday season.
You can write the columnist by email at carla@Offenburger.com or comment by using the handy form below here.