By CARLA OFFENBURGER
COOPER, Iowa, Jan. 16 2017 — How wonderfully calming and humbling it is to know so many of you are willing to partner with me in my new dance with cancer. I can’t begin to thank you all enough. Please stay with me as we start practicing our dance moves.
Every prayer, every healthy wish was so touching and meaningful to me. It is true that when you feel tired and weak, you find strength in knowing others are praying for you. Thank you.
I may regret that I started using this “dancing” theme. It may be hard to keep the comparison going – especially when I am literally in a battle.
In my Jan. 5 column, I wrote how my friend Lauren Smith, of Des Moines, who died recently of cancer, often talked about her long dance with the disease. I hope to model Lauren’s courage and grace as I now go through this. But her husband Clark Smith, who also has been a friend for decades, has another thought on all this. He wrote in a Facebook response to my news that “while ‘dancing with cancer’ does sound better, I encourage you to still call it a ‘battle’ when you have hope for beating the cancer. Words are important.”
He’s right, of course, because in so many ways this will become a battle for survival.
There have been many other touching responses from the last week.
One of the most touching was a photo that Joey Rasmussen, a member of Central Christian Church in Jefferson, sent me showing church members circling the altar there praying for me. Central Christian was my church home for 10 years before I opted to return to Plymouth Congregational Church in Des Moines. Seeing so many familiar people praying for me is both heart-warming and soul-stirring.
Members of Central Christian Church in Jefferson who “came forward” to join in prayer for their former church member Carla Offenburger.
I needed that in what was a very tough week.
You know, after two bouts with cancer, I was confident of how it goes – scan, scan, test and more tests. Surgery. Hospital stay. Recovery time at home. Life back to normal. So I already started making and working my checklist.
Prayer warriors lined up? Check.
Stack of books? Check.
Stack of puzzles? Check.
Friends delivering meals? Check.
Bills paid? Check.
Office desk and “to do” list organized? Check.
New pajamas? Check.
It all came tumbling down on Tuesday night, Jan. 10.
I’d spent Monday in Des Moines at Iowa Methodist Medical Center having a biopsy to confirm what the earlier PET scan had suggested to my oncologist, Dr. Matthew Hill. He’d prepared me that the “rare” cancer I’ve had, adenoid cystic carcinoma (ACC), was probably back – in my liver and on the left and right sides of my lower abdominal/pelvic area.
So, Tuesday night, right when I was just starting to watch President Obama’s farewell address to the nation, which I fully expected to make me cry, Dr. Hill phoned. He wound up making me cry even more than Obama would have.
Yes, my cancer was back, and we’ll “need to start considering our options.” Options? What options? Let Dr. Qasim Chaudhry, the esteemed liver surgeon, take it out like he did in the fall of 2015. I’m ready, I thought. My checklist is done.
Not so fast. It quickly became clear that I am not leading this dance. But I am so grateful that Dr. Hill is.
First, he cared enough to call us as soon as possible with the facts, knowing we Offenburgers would much rather know news when it happens rather than be nervously wondering what it is and what it means. Second, he already had options lined up and ready for us to consider.
So, yes, Dr. Hill had a checklist of his own. And it was quite different from mine. Damn.
“The good news is that all three of these spots are small,” he said. “It’s not like the disease has taken over your liver, filled up your lungs and gotten into your bones. There are still things we can do. Plus, you are not symptomatic – you aren’t already sick and showing signs of this – so that really helps.”
While Dr. Hill gave us that good news, he also was clear that this ACC will be a persistent cancer that will continue to return, so the surgery that I thought was a given isn’t so. Having it in three different locations would make surgery difficult. And how many times do we continue to cut and remove it, if it is clearly in my system? Most likely more cells are lingering and will start to grow eventually.
Sadly, ACC doesn’t yet respond to a specific treatment regimen. Since it will continue to invade my body, Dr. Hill said, “Our goal now becomes slowing down this disease, as best we can, without overly impacting quality of life.”
Right now, here are the possible treatment options:
–While surgically removing the growths/nodules/tumors – whatever you want to call them – is unlikely, it is still not totally ruled out.
–I have an appointment later this week with Dr. Olaf Kauffman, an interventional radiologist, whom Dr. Hill had already consulted when he called. We’ll be considering the possibility of “killing” the growths, possibly by “freezing” them or cutting off the blood supply to them, with a procedure that would be much less invasive than a full surgery would be.
–Dr. Hill is now researching and rounding up chemotherapy drugs that might be effective in follow-up treatment, possibly on a weekly basis for the long-term. In the fall of 2015, before my second surgery, I opted to participate in a “Foundation One” genetic make-up on my liver biopsy to determine if there were any new drugs that might be effective. One was identified, but we didn’t pursue it then because the tumor removal was successful and complete, and no additional treatment was required then. But my decision to participate in that study back then might pay off for me now. If the doctors decide the identified drug could be effective in managing the disease, and if our insurance will help us pay for it, it might be an answer.
–At Dr. Hill’s recommendation, I have now also agreed to apply to be part of the National Cancer Institute’s new “National MATCH” trial program, which would do a closer genetic work-up from my latest biopsy, trying to identify an additional drug or two that could be effective. I’ve already undergone all the preliminary tests for this, and now must wait to see if I’m accepted. The acceptance rate, however, is small – 20 percent or less.
In 2010, when I was undergoing radiation treatments after removal of ACC from my lower jaw/neck, Chuck and I heard a patient talk about “hitchhiking” through cancer treatments for years. She explained it this way: “I get a ride from a treatment for as long as it works or lasts, and by then I hope there’ll be some new treatment I can ride. And it’s worked for 10 years now.”
I feel like I’m now at the start of a long hitchhiking journey myself. I’m thankful for the options that are available to me today and what might be available in the months and years ahead.
I’ve been asked a lot about if I am going to seek a second opinion, and that is also a possibility.
However, when you start reading and learning about ACC, you quickly realize that there is no “expert.” There is not one hospital or clinic that has made ACC its area of expertise. And Dr. Hill has already been consulting with the one other physician we know to have worked with an ACC patient. In a quirk of all quirks, that patient is Anne Carothers-Kay, of Des Moines, who happens to be one of Chuck’s former colleagues in his Des Moines Register years. She has been treated by Dr. Shrujal Baxi, of Memorial Sloan Kettering Cancer Center in New York City. Dr. Baxi has kindly consulted with Dr. Hill on my case, a year ago and again last week. She concurs with the approach he has outlined for us.
There are only about 10,000 cases of ACC nationally, we’ve learned. One of those is mine, so I’ll have to “own it” and do whatever is the best option for me now and into the future. I hope we can manage the disease in a way that allows me time and strength for more good life. I want to continue paying my blessings forward, as Chuck and I have been trying to do since we first started down this cancer path together in 2009.
So there you have it. It was a rough week at the Offenburger house.
We spent Wednesday at home – alone, trying to put the pieces together. We were scared and angry and, well, angry and scared. Then we drove to Des Moines so I could see my mother and sisters. Isn’t that what you would have done, too?
My sister Chris Woods has quiet dinners arranged for Wednesday nights with our mom Sue Burt. We barged in as extra guests, and summoned our older sister Tammie Amsbaugh, too. It was exactly what I needed. The pot roast Chris took out of the crock pot was perfect comfort food, but the hugs were the real comfort I needed.
And now, we continue to review the options, discuss the possibilities and look forward to doing whatever needs to be done in exactly the way we determine is best, as charted by Dr. Hill and a team of other medical professionals.
You are part of my team, too. Keep praying. Pray for guidance for us, pray for a cure for cancer. In my lifetime, please.
You can write the columnist at carla@Offenburger.com or comment using the handy form below here.