By CARLA OFFENBURGER
COOPER, Iowa, March 7, 2017 — There are a lot of thoughts going through my head right now – so many are being sent directly to my heart. It’s all mindboggling really. They’ve exhausted me. But I’m writing them down to share with you in a later column. What I want to do today is give you an update from my last report in mid-February about my continuing “dance with cancer,” a third occurrence of adenoid cystic carcinoma.
On Feb. 14, my lifetime Valentine, Chuck, sat in a waiting area at Iowa Methodist Medical Center in Des Moines, while Dr. Olaf Kaufman did an “ablation” procedure on two of my larger tumors. And it’s important to note that these larger tumors were no larger than 1.5 inches, so we aren’t talking huge or life-disrupting to me right now. The procedure includes “de-bulking” the tumors by freezing them. It’s officially an “outpatient” procedure, but took three hours under full anesthesia and four to five hours in recovery before I was sent home. We left the farm at 6 a.m. and got home at 6 p.m.
I’m not sure about the whole outpatient part of it. I felt pretty weak and nauseous for the rest of the week. It was more than I had anticipated, for sure. But hey, knowing that two tumors have been “de-bulked” made it worth it. And the care from all who saw me that day at Methodist was just fantastic – registration, nurses, techs, docs. Every service door I entered, I was compassionately cared for. What more could I ask?
Carla Offenburger, with her sister Chris Woods (left) and friend Mary Riche, after the “ablation” at Iowa Methodist Medical Center in Des Moines on Feb. 14.
In the meantime, our oncologist Dr. Matthew Hill’s staff got my consultation appointment scheduled with Dr. Barbara Murphy, at Vanderbilt Health-Ingram Cancer Center in Nashville, Tennessee. Dr. Murphy is an oncologist and Vanderbilt Medical School professor who has the most experience with treating and researching adenoid cystic carcinoma (ACC), of any physician we’ve found anywhere.
This was made for Monday, February 27.
Of course, we love Vanderbilt, which is Chuck’s alma mater, and we love travelling to Nashville.
And it just so happened that our favorite baseball team, the Vanderbilt Commodores, had this season’s first weekend series at home Friday-Sunday, Feb. 24-26, hosting the University of Illinois-at-Chicago Flames. So we started our drive on Thursday and made a long weekend of it.
We did three baseball games in three days, under sunny skies and temperatures in the high 50s to 70s. Wow, in February! We even sneaked in a Vandy men’s basketball game late Saturday afternoon, cheering the “Dores” to a victory over Mississippi State — the first time Chuck had seen a game in Memorial Gymnasium in 48 years!
Carla and Chuck at Hawkins Field at Vanderbilt University in Nashville on Feb. 26, cheering on the home Commodores in amazingly spring-like weather.
We stayed with Vandy friends Margot and Dr. Jeff Fosnes, who have a 20-acre farm outside the town of Cross Plains, about 40 minutes north of Nashville.
We had a wonderful trip, overall. The frosting on the cake was a “surprise” overnight stay Tuesday in Oxford, Ohio, with son Andrew Offenburger, his wife Maria and our three granddaughters.
That helped make up for our baseball team losing two of three and Dr. Murphy offering us no “magic pill.”
We liked her the minute she walked in the door – and that has been the case for all of my care providers. A likable connection is so vital to begin a relationship of trust.
Dr. Barbara Murphy and Carla after the consultation at Vanderbilt Health-Ingram Cancer Center in Nashville on Feb. 27.
Here’s what we basically reported to our immediate family members and a few close friends upon our return home:
–Dr. Murphy totally endorses the care and treatment I am receiving from my medical team headed by Dr. Hill, who is based at John Stoddard Cancer Center at Unity Point Health/Des Moines but also sees patients twice a month at Greene County Medical Center in our county seat town of Jefferson.
–There is no known cure or “standard of care” for my cancer, so any and all treatments have a goal of slowing down the disease and extending my life, without severely compromising my lifestyle with intolerable side effects.
–Surgeries for tumor removal or additional “ablations,” like I had done on February 14, will eventually become ineffective and inadvisable, as more tumors continue to grow. However, a targeted removal or ablation to address a specific pain-causing symptom might be considered. (Example, one tumor ablated recently was starting to cause occasional discomfort in breathing. It’s gone now and so is the discomfort.)
–Likewise, general radiation can’t be considered because, as Dr. Murphy told us, “you couldn’t put a high enough dose of radiation to be effective all over the whole abdomen, which is where we’d need to have it,” However, “targeted radiation” on a specific problem tumor or other growth might be possible to stop a specific symptom.
–Our options now include some form of chemotherapy that will be most effective at slowing down the disease. Those to consider are: 1) A “standard chemotherapy,” in which “the drug is directed at cancer cells in a general way.” 2) A more “targeted chemo,” where you use a known & approved drug that has some chance of being effective against the cancerous mutation or abnormality that genetic testing has determined I have. 3) Immunotherapy, in which “you fire up the immune system to try to fight the cancer.” And 4) “clinical trials” of new drugs, or drugs being used in new combinations, with caution about what the toxicity would be.
–Of course, there is also the option of doing no further treatment and just keeping me comfortable. That is not going to be my first choice, but Dr. Murphy says if I did that, because I am in good health other than having this incurable cancer, she’d expect that I would be looking at living another “one to three years.”
–Dr. Murphy pointed out that with any treatment, I would plan to use current and past CT and PET scans as a “baseline,” start the treatment, and do scans every three months or so to check on presence and growth of tumors. “You’re always assessing, ‘Is this working?’ and ‘Is it tolerable?” she said. “If both answers are ‘yes,’ you can continue. If one or both answers are ‘no,’ you can stop the treatment and try something else.”
Dr. Murphy also said my case would be presented to the Ingram Cancer Center’s “tumor board” on Monday, March 6, and told me, “If there are any surprises, we will be in touch with you and Dr. Hill.”
The two most important pieces of advice that Dr. Murphy gave me were these:
–“Yours is a tumor where I think treating you is reasonable. Many adenoid cystic patients that I have, I don’t recommend treatment. In your case, trying something is reasonable. But it’s growing fast enough, we need to try to slow it down.”
–And “the thing that is really most important, is to know yourself, know your heart, so that you can make a decision and move forward – and not regret it later.”
There were some scary moments in the conversation for both Chuck and me, and we both had some tears. But we came in well-fortified spiritually, we think. Earlier in the afternoon, we went to the beautiful and serene Cathedral of the Incarnation across the street from the Vandy campus in Nashville. While Chuck said the rosary, I read the readings for mass that week. This was the one that jumped out at me:
Matthew 6, 24-34:
“Therefore I tell you, do not worry about your life, what you will eat or drink, or about your body, or what you will wear. Is not life more than food and the body more than clothing? Look at the birds in the sky, they do not sow or reap, they gather nothing into barns, yet your heavenly Father feeds them. Are not you more important than they? Can any of you by worrying add a single moment to your life-span? Why are you anxious about clothes? Learn from the way the wild flowers grow. They do not work or spin. But I tell you that not even Solomon in all his splendor was clothed like one of them. If God so clothes the grass of the field, which grows today and is thrown into the oven tomorrow, will he not much more provide for you, O you of little faith? So do not worry and say, ‘What are we to eat?’ or ‘What are we to drink?’ or ‘What are we to wear?’ All these things the pagans seek. Your heavenly Father knows that you need them all. But first seek the kingdom of God and his righteousness, and all these things will be given you besides. Do now worry about tomorrow; tomorrow will take care of itself. Sufficient for a day is its own evil.”
Carla with granddaughters Casey, 6, Audrey, almost 2, and Lindsay, 9, in Oxford OH during our “surprise” overnight visit on Feb. 28.
So, what did my heart tell me?
Chuck and I are moving ahead with our plans to travel to Cuba in late March and early April, with a small group from my Plymouth Congregational Church in Des Moines.
I have set it up so I will have that baseline scan done immediately upon our return. And then as soon as that is done, I will start on an oral chemotherapy regimen. At this point, all chemotherapy options are nearly an equal gamble for me. This option is the least invasive, so it’s a good place to start – with the other options available when we get to the point when we are asking ourselves, “Is it working?” And, “Is it tolerable?”We of course will continue with careful and prayerful considerations of what this will mean for me, for us.
But we won’t look back.
We feel so blessed with the providers I have wrapping their expertise around my care, and we have confidence in the power of prayer for me physically, for my providers, and quite honestly for a miracle, if there is one in God’s plans for me.
And as all this begins to transpire, we know all of you are on the dance floor with us. We will continue to follow the charge of cancer doc & friend of ours, Dr. Richard Deming, who says patients should “live with purpose & passion,” and to “live your life to the fullest.” Chuck has promised that we’ll make it fun, too.
You can write the columnist by email at carla@Offenburger.com, or comment by using the handy form below here.