By CARLA OFFENBURGER
COOPER, Iowa, June 7, 2017 — I have passed the 55-day mark with oral chemotherapy for my adenoid cystic carcinoma cancer.
The daily routine seems almost normal now. At 6:30 a.m., I take four very small pills for a total of two milligrams. Then Chuck and I head out for a walk of 1.5 to 2 miles, up our road and then down the Raccoon River Valley Trail. We get home, the coffee is brewed and I read a bit before I get ready for the full day ahead.
(A shout-out to my sister Chris Woods, who gets up early every morning and “walks with you” but she’s doing her walking in Des Moines while we walk here. And another shout-out to those who are praying for me at 6:30 every morning, too!)
As I take my pills, I pray four words – courage, strength, healing and health. I visualize each one, but pay special attention to the healing, which is why we are doing all of this.
Carla with the chemotherapy drug.
It is all just a bit overwhelming. The “what ifs” run rampant in my mind. Sometimes during the quiet walks, sometimes in the middle of the night, sometimes while driving down the road, sometimes while at the grocery store.
What if the chemo is working and the tumors are disappearing?
What if it’s not working and the tumors are growing?
The plan is to do this for three months, or 90 days (but who’s counting), re-scan me and see what has happened. “Scanxiety” is already settling in.
What isn’t happening – is any intolerable side effects. Lucky me. Blessed really.
My biggest issue is the dry, dry skin that has been seriously overtaking my entire body. Most painful are my fingertips – which are so dry they’ve cracked. That’s made so many things I do painful.
I run out of energy every night around 9, but I blame this on my earlier than usual morning starts. Taking pills every morning at 6:30 makes it impossible to sleep late. The medication has to be refrigerated, so it requires me to get up and get downstairs. After our walk, I’m pretty much awake and going back to bed seems ridiculous.
All in all, it’s a pretty good gig for a cancer patient, don’t you think?
On another matter, in May, I started my four-day work week. I absolutely love it, except the decrease in income, which is taking some getting used to. I love everything else about having Fridays for my own agenda. Thus far, it’s mostly gardening and reading. And what could possibly be wrong with that? As we get into summer, Chuck and I have little trips planned for that extra day every week.
Our little trips are ways we are trying to fit “making memories” more prominently into our lives. Coming up, we’ve got a week with our granddaughters in Oxford, Ohio; then a few days biking the extensive Little Miami Scenic Trail network in western Ohio; a few days at Lake Okoboji in northwest Iowa; a trip to Las Vegas for a Rod Stewart concert, and we hope, a fall trip to New England. And that’s in addition to our normal full summer schedule.
I get uncomfortable planning all this stuff, but I’m following doctor’s orders – “keep busy and have things scheduled to do.” Got it!
Another thing I’m finding myself uncomfortable with is that I neither look nor feel physically sick. Actually, that’s good for me, but it’s a little bewildering for others.
Here’s the deal. When people know you have cancer, they expect you to be sick or sickly. At least you should look sickly. I don’t, at least so far I don’t, and that seems to make it difficult for folks to connect the “Carla-has-cancer” dots. Those who don’t see me on a regular basis are shocked that I’m still working. Others predict that we can’t do something, or go somewhere, because Carla is “sick.”
When you have cancer and have few outwardly physical signs of it, and when you are doing treatment in the privacy of your kitchen every morning and not traveling to a cancer center, it just doesn’t match up with what people think about cancer patients. It’s all a bit odd, really.
Carla shows the small pills, which are the chemo drug trametinib, which is marketed with the name mekinist.
It gets even odder. About a week after I started my chemo, one side of my face was breaking out in a terrible rash that began to spread across my nose and onto my forehead and down my chin. Of course, I was sure it was a reaction to the chemo drug and called our oncologist Dr. Matt Hill in Des Moines.
This is what happens when you have cancer – you question every scratch, every ache, every physical change. And you want to blame it on the cancer or the treatment.
But Dr. Hill didn’t think so. He thought any rash from a chemo reaction would be on my torso, not my face in such a distinct manner. He suggested that I must have “gotten into something.”
He sent me to my primary provider, Sara Fleecs at UnityPoint Clinic in Jefferson. She concurred with Dr. Hill, but noted the rash was infected and she subscribed an antibiotic and a steroid. Of course, I felt better and my face started healing within days.
All of us accepted that I “got into something,” and then Chuck and I remembered that on one of our early morning walks, I’d wandered off the trail to smell a blooming plant I didn’t recognize. After a Google search, we were pretty sure that plant was poison sumac. It made perfect sense.
If you are someone who has seen my face in the last five weeks, you most likely thought to yourself, “Oh, it must be her cancer treatment.” It would be a reasonable connection to think that the rash and tiny blisters on my face were chemo-related.
I only told those who asked that it was poison sumac. The prescriptions that Fleecs gave me seemed to be working and that was it.
But guess what? Sometimes cancer takes some real twists and turns.
After the initial improvements, my skin kept getting dryer, and rash kept appearing on my back and chest. My feet and hands were swelling and my finger tips were becoming more painful. I was sleeping every night with gloves or socks on my hands and plenty of Bag Balm ointment to keep them from splitting. It wasn’t always enough.
I went back to Fleecs this week whining about all these physical ailments – thankful that it wasn’t anything I couldn’t tolerate, but still thinking something could be done. The swollen ankles worried me the most.
Upon further review and consultation with UnityPoint Clinic’s Dr. Jon Van Der Veer, it was determined we probably are dealing with chemo reactions – including the rash on my face! Lab tests were ordered, to be certain, and it just so happened that Dr. Hill was in Jefferson seeing patients that day, so I visited him as well.
After a lab report that was actually quite good, and re-examinations of my face, torso and feet – we all agreed: We can’t blame my meandering off the trail to smell a blooming plant that made me curious, and we can blame cancer/chemo.
The good news is the drugs prescribed earlier did work, so they were prescribed again, and I’ll be on the mend in a few days. No harm, no foul, I guess.
We early morning walkers on the Raccoon River Valley Trail, just up the gravel road from our farmhouse. Actually, this photo was taken on an early April morning when it was still a bit chilly, as you can see.
And this brings up another thought I’ve had over the last several months. It initially stems from a video I saw on empathy put out by the Cleveland Clinic. The video shows all kinds of people walking into a hospital, with captions saying what is really happening in their lives, like “seeing father for the last time,” or “just found out she had breast cancer,” or “wife left him recently.” The idea is that we don’t know what others are going through, so we should treat all with kindness.
Sometimes over these last several months, I have found myself thinking about these scenarios for myself. When in the airport, I’ve thought, “If I am sitting here with cancer, what are others sitting here with?” Or when in a restaurant, I’ve thought, “This waitress doesn’t know what I’m going through.” Or when driving down the road and a car goes by, I wonder what that driver has. It’s an interesting train of thought that I can’t get rid of. I’ve just tried to treat everyone I meet with kindness. We all should.
Rest assured, I don’t always think about my cancer. I think a lot about my flower gardens that always need weeding, but are blooming like crazy right now.
I’m also reading a lot, and just to change the subject, here’s what I’ve enjoyed reading recently:
“The Buried Giants,” by Kazuo Ishiguro
“Miller’s Valley,” by Anna Quindlen
“Commonwealth,” by Ann Patchett
“Winter Bloom,” by Tara Heavey
“The Dream Lover,”by Elizabeth Berg
“The Secret Chord,” by Geraldine Brooks
“Hallelujah Anyway,” by Anne Lamott
“Women, Food & God,” by Geneen Roth
“The Little Paris Bookshop,” by Nina George
“Crossing the Horizon,” by Laurie Notaro
I’m going to keep reading, try to keep my gardens weeded, get up every morning and take four small chemo pills, take a walk with my husband – and pray. I’m praying for courage, strength, healing and health. Pray with me, please.
You can write the columnist by email at carla@Offenburger.com, or comment by using the handy form below here.