By CARLA OFFENBURGER
COOPER, Iowa, April 18, 2017 — Thank you. Thank you. Thank you.
In her book, “Thanks, Help, Wow,” Anne Lamott says “thank you” can be a prayer. And I’m praying it. I am thankful for a wonderful trip to Cuba and thankful that my cancer sat idle and quiet so I could enjoy it.
Chuck and I had such a wonderful trip, we are still basking in its afterglow. He’ll be doing most of the writing about that adventure, and you can read his first piece here. But I need to get you all caught up on my cancer dance.
Our Cuba trip planning started late last fall, so from the get-go in late December when I was diagnosed with my third round of adenoid cystic carcinoma, we were telling every physician I saw that we had a trip planned to Cuba in late March. We were focused on treating the cancer, but if at all possible, we didn’t want it to interrupt a long time goal of travelling to Cuba. Dr. Matthew Hill, Dr. Olaf Kaufman and Dr. Barbara Murphy were all enthusiastic and encouraging about our trip. And we all made it work.
I felt great the entire time and can’t tell you how grateful I am for that.
Carla and Chuck Offenburger in El Callejon de Hamel (Hamel’s Alley) in central Havana, Cuba. The alley is famous for its artsy recycling of castoffs. The somewhat spooky saying on the sign to the left translates roughly as “Life is a step, death is eternal.”
Upon our return, however, I had to get down to serious cancer business. We returned late Thursday, April 6, and on Tuesday, April 11, I had a “baseline” scan to see where my cancer had taken itself since a scan in January.
In that interval, I’d had an “ablation” treatment on Feb. 14, when Dr. Olaf Kaufman used long needles and froze away two of the larger tumors in my abdomen and pelvic area. That procedure, while “outpatient,” left me laid up for a good week and sore & feeling lousy for another week.
Wednesday, April 12, I had an appointment with our oncologist Dr. Hill to review the new scan and discuss my chemotherapy plans.
The scan showed residue evidence of the frozen tumors, of course. It also showed another tumor that has grown from 1.5 cm in January to 2.5 cm now (so it’s now just smaller than an inch). Smaller tumors along my pelvic area are still there but seem not to have grown.
Dr. Hill said none of my tumors are large enough to be “symptomatic” at this point, which is good news. That’s why I feel good. That’s the goal – to keep me feeling good.
But Dr. Hill knew we needed to be doing some kind of treatment with the aim of keeping the tumors from growing larger or multiplying, and that’s what he has been researching and planning.
It’s going to be a fine balancing act – one that works, we hope.
Last fall, we had a genetic work-up done on tissue samples from one of my biopsies by the medical research organization FoundationOne, of Cambridge, Mass. That identified a chemotherapy drug trametinib, which is sold as Mekinist, as possibly being effective in slowing or stopping the mutations that my specific cancer is causing.
It’s a long shot. All my options are. But this Mekinist is the shot we are using first.
Recall, my cancer is one for which the usual treatment is removing tumors via surgery. I’ve had that done twice now, from my lower jaw & neck in 2010 and from my liver in 2015.
My current diagnosis has identified too many tumors in too many places to consider surgical removal. As specialist Dr. Murphy told me in February, when we met with her at Vanderbilt Health in Nashville, “your cancer has made its stand in too many places.” She didn’t rule out, however, using surgery if a specific tumor grows and abuts a vital organ, creating havoc.
So, back to Wednesday with Dr. Hill. We went through the regimen I will follow in taking the chemotheraphy drug Mekinist, orally, every morning at 6:30 a.m.
He dutifully reviewed all of the possible side effects, mostly the usual – diarrhea, nausea, mouth sores, possible torso rash, and sores on my hands and feet. Side effects are the price for potential healing, so there is nothing to do but tolerate them. And he assured me, most can be controlled by another drug, if necessary. Go figure.
On Thursday morning, April 13, I woke up at 6:30 a.m. and took four small Mekinist pills. I prayed one word for each pill I took – “courage,” “strength,” “healing” and “health.”
I pray for courage and strength so I can make this cancer matter in the ways that God has planned for me. Healing is asking God to let the chemo work and to heal me. Health is asking that I remain healthy while taking the drug.
Chuck and I added a morning walk to the regimen – up the gravel road and down the Raccoon River Valley Trail. That’s cathartic in its own way, really. It’s worked well thus far.
On Easter Sunday, April 16, I experienced my first side effect, and it took me by surprise.
Thirty minutes before we were leaving for Plymouth United Church of Christ in Des Moines for Easter services, I was in the bathroom – thinking we’d be going nowhere. We made it just slightly late for the 11 a.m. service. Being in church every Sunday has been and remains very important to me during this cancer journey. Missing it on Easter would have put me in a serious funk.
This will be our routine for the next 90 days or so, depending on any adverse side effects that might have us changing course (hence the health prayer!) Then I’ll have another set of scans. And we’ll ask the questions, “Is it working?” and “Is it tolerable?” And we’ll go from there.
Dr. Hill told me that Mekinist is slow-working, so we might see some tumor growth before we see shrinkage or stabilization. “It might be of no benefit at all to you, or it might be the golden ticket,” as he said.
An additional instruction from him: “Attitude is important.” He encouraged me to be optimistic, stay healthy, and have specific & ongoing goals for the future. Identify things I want to do, he said, and start doing them. He added that prayer and support groups are also important.
I love that man. He’s so calm and level-headed, compassionate and even fun. Can’t ask for more than that from a doc who is leading you into scary territory, with no certain outcome.
So I am rearranging my life a bit. And that to-do list of goals is growing.
Chuck and Carla Offenburger in “Lolo Galeria-Taller,” the working studio and gallery of two of Cuba’s best known contemporary artists, painter & cartoonist Manuel Hernandez and sculptor Osmany “Lolo” Betancourt, in the city of Matanzas.
This week I start four-day work weeks, giving me three-day weekends to do “what Carla wants to do.” I will tell all of you what I told my bosses and my office assistant about this plan. I don’t want the extra day off because I am sick, I want it because I am healthy and I want to do things. Right now, those things mostly include my many flower beds and my vegetable garden!
I started on those this past week, and on Saturday, Chuck yelled out to me, “Don’t overdo it!” Then he immediately added, “On the other hand, maybe you should stay out here. It’s the best thing I know that will keep you alive – your gardens!”
The “goals list” is the bucket list we all have, or should have. But I’ve never really had one. Chuck and I pretty much talk about what we want to do and then do it. So perhaps my list is a humble one right now. What I really want to do is make memories!
It’s an awkward position to be in really. I’m making that list and taking it seriously. But then I’m filled with hope and optimism on how my treatment will work in my favor. If I’m optimistic, how can it be that I am also getting the things I’ve always wanted to do done on an advanced timetable?
See the dilemma?
Chuck says I’m thinking about it too much and I just need to stay healthy and do things I want to do. He noted, “No one knows if they are going to be here in two weeks or two years.” My friend Mary Riche, of Des Moines, says, “I see what you mean. If you’re optimistic, but start doing big or special things, folks might think you aren’t telling them the truth about your diagnosis.” And my sister Chris Woods, also in Des Moines, said, “Do all the things on your list and then when this cancer bout is behind us, we’ll have a lot of time to sit on the porch as old ladies.”
All three of them are right, of course.
None of us know how much time we have, so we all should not be making a bucket list, but instead doing a bucket list. As I start doing big and special things, rest assured that I am being as honest with you as I am with myself on my diagnosis. And I can’t wait to sit on my porch in rocking chairs with my sisters – as old ladies!
Here’s another thought that’s been popping in my head too often lately. It’s hard to be healthy, when people expect you to be sick!
So when you see me up and about looking healthy, celebrate with me. I am sick, very sick. That’s the elephant in the room, so we don’t have to ignore it, we just have to focus on the positive. I do that with my Jefferson friend Lois Clark. Every time I run into Lois around town, she gets a big grin on her face and I quickly say, “I’m still here.” We both smile and then I give her my health update. She’s a good sport about it all and a good supportive friend, too.
I recently received a heartfelt letter from friends Art and Mary Seaman, of Kittanning, Penn., who shared how distraught they are about my diagnosis and how they are processing it themselves. I so appreciated this honest and straightforward acknowledgement. They also promised pie if they were able to journey from their home to visit soon.
While in Cuba, Chuck and I took Cuban dance lessons and we weren’t very good. There are a lot of quick movements in Cuban dances, and we pretty much made fools of ourselves.
People from Iowa learning Cuban dances from instructors in Havana.
But this cancer dance we are doing? We are better at it, I think.
We know the moves. We’ve had a lot of practice and experience. Too much, sadly, but we do think that gives us an advantage in how to deal with it.
While we get our rhythm going for this current round, we’ll keep our dancing shoes on, and it’s possible that we might work-in a few Cuban dance moves, too. Not good moves, probably, but the Cuban spirit will be with us nonetheless.
Right now, it’s my good health that is making this journey do-able. Dr. Hill says his goal is to keep me healthy and active, enjoying and living my life. So for the next 90 days, I’ll continue getting up and taking four pills at 6:30 a.m. and praying for courage, strength, healing and health.
Pray along with me, please.
You can write the columnist by email at carla@Offenburger.com, or comment by using the handy form below here.