By CARLA OFFENBURGER
COOPER, Iowa, Aug. 20, 2017 — In my continuing “dance” with cancer — adenoid cystic carcinoma — the music is getting louder and the dance moves seem a bit tougher right now. But, hey, I’m still dancing.
Bring on the big band.
When I last wrote about this, I explained that my 90-day chemotherapy regimen had not worked, and we were awaiting word whether a different chemotherapy drug, keytruda, might be an option.
We’ve now had to change dance moves again.
Days after I wrote that column, Dr. Matthew Hill, my oncologist, said genetic testing revealed that the cancer mutations in my cells don’t qualify for keytruda targeting. Damn. Who knew that cancer cells had to “qualify” for possible treatment options? Perhaps it’s a blessing in disguise.
Dr. Hill also had asked the “tumor board” of cancer doctors at Unity Point’s Iowa Methodist Medical Center in Des Moines to once again review my case. Dr. Qasim Chaudhry, who removed a huge cancerous tumor from my liver two years ago, and Dr. Olaf Kaufman, who did an “ablation” on two small cancerous tumors earlier this year, were both there when the tumor board discussed my case.
Ultimately, Dr. Chaudhry offered to go back in and remove two small tumors on my liver and three others identified in my abdominal and pelvic areas. The largest of these tumors is just over an inch in diameter, so they are all relatively small.
Here’s Carla Offenburger (center) in December, 2015, after she’d had tumor-removal surgery from her liver by Dr. Qasim Chaudhry, and on the left is nurse Christina from his staff.
When Dr. Hill told me this news, the first thing I said to my husband Chuck Offenburger is that I’m glad I like Dr. Chaudhry’s work and bedside manner. I told that to Dr. Chaudhry, too, when I visited him a week ago. So, surgery is the direction we are headed.
Dr. Hill reminds me over and over again that I am healthy, physically fit for my age, and very much a candidate for successful surgery. I am grateful for that, and also that Chuck and I have a fairly healthy lifestyle. I am also thankful that we have kept up our 6:30 a.m. walks, with few exceptions.
I am scheduled for surgery on Wednesday, Aug. 30, first thing in the morning. Dr. Chaudhry says it will take several hours and he’ll take the five identified tumors and any others he sees that can be removed. He mentioned using something called a “shark bite.” Egads!
“We‘ll cross our fingers,” he said.
Indeed, we will.
It’s been real clear to me that removal of my cancerous tumors is really the only treatment option I have at this time. Radiation and chemotherapy just don’t work on adenoid cystic carcinoma — and we’ve checked it all out, trust me.
If all goes as we’d like, this surgery will push the cancer back for a few more years. At the same time, Chuck and I and our physicians will be diligently watching for new treatment options. With all the research and new treatment developments that are happening across the U.S. and around the world, I am hopeful.
Chuck and I call this “hitchhiking” from one treatment possibility to the next. It’s a phrase we learned years ago from another cancer patient when we first started our cancer dances. It’s how we hold on to hope.
So, on Aug. 30, I’ll find myself back at Iowa Methodist for a major surgery, and then stay there for seven to 10 days of recovery. When Chuck brings me home, I’ll spend the next five weeks or so doing football and baseball on the radio and computers, watching the start of fall harvest from my porch, reading and doing jigsaw puzzles — and taking heavy drugs and sleeping a lot (on my back).
I’m stacking up some books to read (any good suggestions?), ordering up some new jigsaw puzzles and getting the house in order. I’m also lining up some “babysitters” so Chuck can get out of the house on a regular basis. First in line? His sister Chris Werner, of Cedar Rapids, who will be with us our first few days back home.
I told Chuck that repeating almost the same surgery and recovery that I had in 2015 is a double-edged sword. I know what to expect — both the bad and the good.
- It’s physically painful for weeks.
- Eating is difficult and unpleasant.
- Sleeping on my back is not what I prefer.
- It’s a long time off work — which requires immense prep work. And takes all my vacation days.
- It’s a financial drain. Short term disability only pays 60 percent of my salary, and insurance doesn’t cover the incidentals that ultimately occur.
- It has me missing some fun activities we had planned for fall.
- Recovery seems really slow.
Ouch! Again. (I know I’m whining!)
- I know I can do it, because I’ve done it before.
- I have a great support system of friends and family.
- I like my care providers.
- I still have the sweat pants I wore for six weeks in 2015.
- I won’t have to cook.
- It’s fall in Iowa.
- It will prolong my life.
- And most importantly, I know the ultimate physician is on my team.
So here we go again — join me on the dance floor. And pray for me , the same prayer I’ve been praying for months: “Courage, strength, healing and health.”
ALL CANCER PATIENTS ARE ENTITLED TO AN EMOTIONAL BREAKDOWN, AREN’T WE? Well, of course it was going to happen — having an emotional meltdown about my cancer. Thanks to the two women in a RAGBRAI food line in Garner, Iowa, on Tuesday, July 25, for taking my breakdown in stride. It was a painful one, too.
I wasn’t riding my bicycle on RAGBRAI, but instead was driving a car in support of Chuck and our friend from Cuba, Reinier Menendez. They were bicycling the one day’s route between Algona and Clear Lake. I met them for an afternoon break in Garner.
First, one of the two women stumbled and stepped on the toes on my left foot, the very toes that were riddled with blisters as a side effect of my oral chemo treatment. Those blisters were healing nicely and I, in my own stupidity, had removed my shoes and socks, and was wearing shower shoes so my toes could get some sunshine and fresh air. And wow, did it feel good!
And I burst into tears. The pain was excruciating. When the woman looked down to see my ugly toes that now had been scraped and were looking, well, bad, she was frantic that she had caused all that ugliness and damage.
No, I reassured her in tears, the chemo had done all this, “and it didn’t even work!” As she and her friend tried to comfort me there, it came out that both are cancer survivors themselves. I found myself blubbering through my tears about how unfair this all was. Then one of them kindly said, “at least you didn’t lose your hair,” and I said back rather loudly, “but I didn’t lose my tumors, either!”
Eventually, we had a calmer conversation about my cancer and my treatment options, but I suspect those two walked away thinking, “Wow, that was bizarre!” I walked away limping and in tears.
But you know what? I obviously needed that, and I’m grateful that two cancer survivors were there to listen to me.
They were a blessing, one of many that have come my way.
You can write the columnist by email at carla@Offenburger.com or comment by using the handy for below here.