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.