By CARLA OFFENBURGER
COOPER, Iowa, Sept. 8, 2015 — I am pretty good at moving away from, or even ignoring, that which I do not like.
I have no problem not finishing a book if I do not like the storyline or the characters. Sometimes this can happen on page 1, sometimes it takes up to 50 or 100 pages.
I have successfully kept tuna out of my smelling zone for well over 30 years – there has not been tuna in any form in my house. I avoid cafeterias on days when tuna is on the menu (even if it requires me to turn and walk out the door). And I have even been fortunate to be in a family where no one brings tuna as a potluck dish. If absolutely necessary, I can find another table to sit at if tuna is at a church potluck.
I can also walk away from a fight. If I feel slighted or deeply insulted, for the most part I can let go and then let bygones be bygones. While I have been known to hold a grudge, I don’t hold on to things or people whom I don’t seem to be able to get along with.
I am not so lucky getting rid of cancer. Cancer doesn’t care if I don’t like its plot, or its smell or that it is always in disagreement with me. It has stricken me again.
My rare adenoid cystic carcinoma has returned after a 5-year absence. Back then, it was in a tumor that was removed from my throat. Then I underwent six weeks of radiation of my head and neck, and I’ve been “clear,” as far as we knew, until recently. Now it has returned in my liver. Damn, damn, triple damn.
So now, I can no longer be a survivor or be “in remission.” I must be a warrior.
Many have fought this battle. Our household has fought this battle. I know the armor I must wear. I know the fears I must face. I know the strength I must have.
I know it’s going to interrupt a peaceful fall. It is inconvenient. And as my sister Chris Woods told me on the phone recently “it is going to be a bit of a challenge.”
A challenge indeed.
I am gathering the troops, and Dear Reader, that includes you. So far, my troops have been family members, very close friends and several physicians. The physicians have been gathering the evidence.
All the physicians agree. First, provider Sara Fleecs at UnityPoint Clinic in Jefferson, realized something didn’t seem right with an exam that began when I was sure my gallbladder was the problem. The ultrasound she ordered showed differently. There is a large mass in my liver.
A follow-up MRI confirmed the mass, but was inconclusive as to whether the mass was benign or malignant. We were hopeful it might be a “giant hemangioma,” which is like a clump of blood and tissue that is fairly common to find growing in or on the liver — and they’re usually benign.
A visit with liver specialist Dr. Donald Hillebrand, who is with the Center for Liver Disease at UnityPoint Health in Des Moines, confirmed the mass was in my liver and a biopsy was done. Sadly on Friday, Aug. 28, at 2:34 p.m. (you remember things like this), Dr. Hillebrand was the one who told me my adenoid cystic carcinoma had returned.
In our visit, he indicated that my “case” had been discussed the night before at the “tumor board.” While this isn’t a good sign, it is a hopeful sign. It means that more than one expert is studying my case and considering treatment options. Multiple experts are already involved.
The next step was an appointment with oncologist Dr. Matthew Hill with the Cancer Center of Iowa and the John Stoddard Cancer Center in Des Moines. In addition to seeing patients there, Dr. Hill also sees patients two days each month at UnityPoint Clinic in Jefferson. I found him compassionate, honest and straightforward.
What a career these physicians choose! While they are often the bearers of bad and sad news, they also seem generally to be optimistic, thank God.
Most importantly, Dr. Hill had reviewed my case prior to our meeting and had a plan in place. Here’s his immediate plan for me:
He convinced me to be a part of the relatively new “FoundationOne” testing program. Cancer cells from my biopsy are undergoing a “genomic profile,” which is a scientific analysis of their make-up, to see what “mutations” the cancer has caused. Then FoundationOne testers go to their knowledge bank of pharmaceuticals that have proved successful against specific cellular mutations from various cancers. They will be looking for a drug or drugs that would seem to have potential in stopping the growth of those mutations in the cancerous cells threatening me now.
There is a brief, fairly-understandable video and other better information about this “FoundationOne” approach, at this website: www.foundationone.com. I encourage you to watch it. The goal is that if they can find what seems to be a good “match” of drugs for my cancer cells, this treatment could be an option for me.
We got all the paperwork for this testing done last week. That included a patient financial assistance application so the foundation would help cover whatever costs my insurance company won’t cover. I was approved for 70 percent assistance, which means the full $5,800 cost will be $1,400 for us – a good investment, we think.
This Wednesday, Sept. 9, I am scheduled for a Pet/CT scan to identify if the cancer is located in or around any of my other organs. Imagine the fear that comes with knowing this is what is next, and the phone call you get afterward will change everything about your life – temporarily or permanently.
Then on Friday, Sept. 11, I will meet with a specialist liver surgeon, Dr. Qasim Chaudry, also of the Center for Liver Disease at UnityPoint Health, who happened to be present at the tumor board meeting when Dr. Hillebrand brought up my case. Dr. Hill has also already been in communication with Dr. Chaudry about me, as well.
In my ideal cancer world, we will find that the adenoid cystic carcinoma has found it rather comfortable in my liver and is nowhere else. And then Dr. Chaudry will want to admit me immediately for surgery to remove the cancer and obviously a portion of my liver. If I don’t get this initial wish in the way things go, I will adjust and make a new plan of attack.
But attack it, we will.
Of course both Chuck and I have done our own fair amount of Googling and researching. But to be honest, it’s almost always best to use a certain amount of caution when trying to self-diagnose. It’s scary and overwhelming. It also makes for a whole lot of worrying.
The deal is, my cancer is so rare that it’s hard to find any physicians who are genuine experts about it. Those who have patients like me continue to search for answers. We heard that five years ago, and we are hearing the same thing again. It appears that physicians everywhere are still pondering the treatment options for this. They don’t necessarily include the common chemotherapy, but more likely surgery and radiation to remove the cancer as well as try to get rid of any lingering cancer cells, which could travel my blood stream to reappear elsewhere.
So for right now, being treated close to home feels right. The expert physicians I have met with so far feel like a good fit right now.
I’d like to think that the next person in this area who is diagnosed with this rare cancer will benefit from having physicians close by who learned from my treatments five years ago and now.
We were told back then that my adenoid cystic carcinoma might re-occur – and we watched. I had regular check-ups, became a hypochondriac when it came to a cold, a stomach ache or back pain. I have been faithful with blood work, mammograms, MRIs and colonoscopies. Obviously, my liver problem eluded detection by me and in all those tests.
Also five years ago, Stephanie Cook Stockton, who grew up in the southwest Iowa town of Shenandoah with Chuck and now lives in Warrensburg, Mo., told me that when she was going through cancer treatments in 2001, a good friend of hers said, “When things get tough, just close your eyes and picture all the people who are praying for you.” Stephanie said, “It really helps!” She also suggested, “When you get so sick or tired, or whiney – and just don’t feel like praying — know that someone else is carrying you through!”
I’m going to keep her advice in mind this go ’round. too.
Please pray for me and Chuck. Carry us through when we are too sick or tired. But please do not bring us a tuna casserole.
You can write the columnist at carla@Offenburger.com or comment using the handy form below here.
61 thoughts on “When cancer returns, a survivor must become a warrior, so she is armoring-up for the fight ahead”
Oh my, Carla! I am SO SORRY this has raised its ugly head again. Please know that the Libbie household is praying and will continue to uplift you daily. You are not alone!
Love and prayers, Georgie
Dear Carla, do count us among the warriors in this battle. We pray for your return to good health and will continue to do so.
Thinking of you and holding you close, Carol
Carla and Chuck, you are residing daily in my heart, thoughts and prayers. I wish for you a strong armor, peace in your being and victory over this insidious cancer.
Love and hugs, Anne
Although I do not know you, I will be praying and especially if I see tuna, I will say an extra prayer for your wife and you.
My prayers are with you. So sorry to read about the return. Words of hope from Winnie the Pooh, which I’m pretty sure you already live by: “Promise me that you’ll remember, you are BRAVER than you believe, STRONGER than you seem, SMARTER than you think.” — A.A. Milne
You are a survivor. You will beat this! Grab a “root” and hang on! We’re all praying for you!
Dear Carla and Chuck. I was sorry to hear of the return of Carla’s cancer. Please know that you are in my prayers every day for strength, courage, and healing.
When I was dealing with an auto-immune difficulty and it surfaced for the second time, I got flowers from a friend with “SHIT, SHIT, SHIT” written on the little florist card. Well, DOUBLE SHIT, SHIT, SHIT. Wish you didn’t have to put on your armor, take up your sword and step onto this battlefield, Carla. Know that each day you will be in my morning prayers for another day of the healthiest of cells!
Carla, please know our prayer candle is lit daily for you and Chuck.
Carla, so sorry to hear your news. You looked sooo good when we saw you in Iowa City. You never know what’s lurking. Of course, you are on our prayer list.
God’s blessings, Joan and Bob Weidemann
Carla and Chuck, I will be storming the gates of those who are in charge of good outcomes to make sure you are on a priority list. May the good you have shared with others now come to you!
Carla, will keep you and Chuck in our prayers! And when you find yourself feeling overwhelmed, you can lean on the Lord!
Prayers for you, Chuck and the doctors will be daily. Sorry to hear this news, but you are a super strong person with unwavering faith! You will be in the the hearts and prayers of so many people, and prayers, as you know, do work. Love to both of you,
P.S. — You won’t be offended if I have a tuna sandwich for lunch, will you?
Have you checked alternative treatments such as cannabis oil? Just been reading articles about its success in treating certain cancers. I will pray for you. I previously worked with Chris Offenburger Walsh Werner at McKinley School in Cedar Rapids years ago. Leave no stone unturned, which I am sure you aren’t. Blessings of healing to you and your family.
I hope you voted in the school board elections today and go to Eddie Bauer and get something comfortable that you love.
We will be praying for you! Hope everything goes better than expected.
Carla, I am SO sorry to hear this news but want you to know you are now at the top of my prayer list that the treatment plan is effective in ridding your body of all the cancer cells, that the cancer has not spread elsewhere and that you and Chuck will find God’s peace during this process. Rest assured that we will be carrying you through prayer when it feels like you can’t do it on your own.
Wishing you peace through this trial.
Kathy and Ron Ridnour
Sorry to hear about the return of the cancer – I’ll be praying for you here, Carla.
I accidentally located your site today and am pleased to see you and Chuck in Greene County. I was reading the Oatts reunion concert piece. Looking deeper I began to read your post and subsequent news. My heart goes out to you and your family. Your outlook and strength is to be commended. Last year at this time I was with my brother in Florida as he battled a similar cancer. I doubt it was an accident I found you today.
Keep strong, George
Dear Friend, you are in my thoughts as you traverse this new territory. I am dressed for battle with you, hand in hand. Can you picture us? I can.
Carla and Chuck, I love you both and you can rest assured you will be in my prayers. God will be with you on your journey through this medical situation. Prayers do work and as you know ALL THINGS ARE POSSIBLE THROUGH GOD! Many of us have faced adversity and, by faith and GOD’s help, we are survivors. Please keep all of us, your friends, updated on your progress.
I feel bad that you are having to deal with this again. I do not know you well but I will send my prayers for good health for you. You have had a positive effect in our little community.
Close your eyes and meditate that large, beautiful and loving angels are with you at all times. They will never leave your side. Find enjoyment and love that comes to you each and every day.
Carla and Chuck, I am saddened to read that Carla’s cancer has returned. I will definitely keep you in my daily prayers.
Damn, damn, triple damn is so right! My heart goes out to you, Chuck and your family. Prayers on their way! Take care and God bless!
Prayers are powerful. I will be a Prayer Warrior.
Dear Carla, exactly 20 years ago we were celebrating on the National Mall in Washington, D.C. (at the end of our Iowa 150 Bike Ride/A Sesquicentennial Expedition). Life takes some wild twists.
First Chuck, then you, then Chuck again and now you again. You two know how to fight and win. A good team of doctors, your positive attitude, your faith and our prayers will win again. God bless you and Chuck.
Chris Offenburger Walsh Werner (Chuck’s sister) shared your story, and please know that the Cedar Rapids teacher community is praying, sending positive thoughts, and no tuna casserole your way! I have had many friends fight this battle, and one thing that I’ve learned, nothing is tougher than a warrior woman!
Prayers for you and Chuck as you prepare for battle! You can beat this! God bless.
Praying for you!
Hello, Carla. I am sad about your diagnosis. Just know that you and Chuck are in my prayers. You beat it before and you will beat it again. You go, girl.
We’re praying for you and Chuck, too.
I will keep you both in my prayers!
Chuck and Carla, you will be in my thoughts and prayers!
Damn, damn, triple damn. I agree with that! I gotta believe that it won’t kill ya, it’ll make you stronger! You are one of the toughest cookies I know Carla!! Thank you for letting us know. I DO believe in the power of prayer. Know that there will be a bunch of PRAYER POWER out there for you!
Carla, we are adding you to our prayer list! Prayer is powerful!
Count me in as one of your prayer warriors.
My heart goes out to you and your family. My dad and father-in-law are both battling cancer right now, too. Thank you for sharing a piece of you, your life with me and all the other readers. I can only imagine what you are going through. I will be praying for you and your husband. God will be carrying you and your husband. His love is like no mother’s love, it is stronger, deeper, perfect. He will never leave you or forsake you. He has already carried you this whole time, and at your weakest he is at his strongest. Never give up because he never gave up on you. He is there still carrying you ever so gently. I will be praying for you, lovely lady!
I knew I liked you! I understand your dislike for canned tuna. Unfortunately for me, Lou Ann loves canned tuna. I love fresh tuna grilled, but that’s something different. It’s a shock to hear that your cancer has returned. But I like that you have an expert team behind you so as a warrior, you can take up the battle again. Be assured that you and Chuck will be in our prayers, and I’m confident that your cancer will have a foe that will not give up. Go for it Carla, and beat cancer’s butt.
I am so sorry you have to deal with cancer again. I know you are strong and have God on your side. You can beat it again. Will keep you in my prayers.
Carla, praying for you during your fight. Stay positive when you can. Cry when you need to. You’re tough and will get through this challenge. I’ll be thinking of you!
Expression of vulnerability is the first step toward healing and takes incredible courage. Sharing your story, your fears, and your journey invite your army of support to join the fight. Count me in as a warrior.
Prayers to you and Chuck as you re-start your battle. Know that you are surrounded by people who care about you. You will surely be in my thoughts. Praying for good news with your scan and praying for your strength to overcome this hardship.
Carla, you and Chuck have been in my thoughts often this summer because of the 20th anniversary of the “Iowa 150 Bike Ride/ A Sesquicentennial Expedition” I am sorry you have this difficult journey ahead now. You are not alone — prayers are with you every step of the way.
Prayers are with you and everyone who is working with and praying for you!
Nick, from your days on Skyline Drive in Des Moines
GOD is in control. May his will be done in not only your life but in all of our lives. Cancer has and is affecting my family as well. May all be provided hope, faith, healing, and also the strength. Put our trust in the LORD almighty. Bless you and will continue to pray for healing.
Carla I am sending prayers for both you and Chuck I know that you are a fantastic warrior and you will win this battle.
Prayers from southern California.
Don’t forget to celebrate every day in spite of the work you will be doing! I send you bright white energy and positive thoughts to do both.
Sorry to hear the news and will be praying for both you and Chuck.
You two will certainly be in our daily prayers! We know you two will make a strong and conquer this challenge. Keep God in the mix! Let us know if we can help in any way.
Prayers and best wishes to you both as you renew the “good fight.” I’m a longtime fan of Chuck’s writing from my Iowa youth (Harlan), and have been reading you both from here in North Carolina for years now. It always takes me “home” and brightens my day — whether it’s mice in the house or tuna aversions. Thanks for putting yourselves out there for us all to enjoy, even from a thousand miles away, and know that positive energy is flowing your way from the East Coast.
Carla, you’re already helping people with columns like this, sharing your experience and your wisdom. We’re praying for you and Chuck.
I had that empty feeling that comes with bad news while reading your post. You are so right to feel comfortable for the doctors working locally for you. You have an army of people to support you, so take advantage of all of us. Prayers are coming your way.
So sorry this has come back. You are in my prayer book. Take care of each other.
Carla and Chuck, you are in my thoughts and prayers. You’re both pillars of strength and endurance, and you will fight this battle with the same tenacity as you have before. You will have thousands of people who care so deeply for you both, providing a strong armor of prayers to surround you during this battle. Keep being the bright bulb you are to others!
Praying for you and your family, Carla. Remember HIS words: “No weapon formed against me shall prosper.” You’ll be in our prayers daily. You’re a strong and courageous woman!
Our prayers and many positive thoughts are coming your way. God bless.
Dear Carla, sorry you must “armor up” again. Thinking about you. Love and Prayers.
Carla, you have my prayer support. Want you to know that I shared your story with our granddaughter, Kristen Lindeen, whom you know and is a prayer warrior. Count her as one of your supporters!
Oh Carla – so sorry to hear you have to put on your warrior pants again, but I know you will wear them well! How generous (and not at all surprising) of you to share your journey publicly so others may benefit from your experience. Fight hard and know that we are all fighting with you! As one of the other posters asked, “Can you see us?” I can. Be strong, fight hard — we’re right beside you.
Thoughts and prayers from Storm Lake. Know many people here will be thinking of you. A good Methodist friend of mine you may know, Jewell, told me you could never have enough people praying for you. I always take her advice.