By CARLA OFFENBURGER
COOPER, Iowa, July 21, 2017 — In early June I wrote that I had reached the 55-day mark on my oral chemo I started back in April for my adenoid cystic carcinoma cancer. And on July 11, I reached 90 days — the mark that brought on a new CT scan and a new game plan.
But let me tell you about the last 40 days of my oral chemo experience. As I promised, I read a lot. I kept my gardens up as best as anyone has, I suppose. And every morning at 6:30 a.m., I took four small chemo pills, took a walk with my husband Chuck and prayed. I prayed for courage, strength, healing and health. Many of you prayed with me and I felt those prayers — and I appreciate them.
As the chemo days went by I started noticing more side effects. My hair stopped growing, so did my nails. The rash on my arms became so bad I couldn’t expose myself to any sun, so I resorted to long sleeve shirts and a lot of sun block lotion. Then, in the last two weeks, I developed big blisters on nearly all my toes and both heels! Oh my! These got so big and painful I couldn’t wear shoes. This made our morning walks impossible, and I was wearing loose-fitting sandals and then slippers to work. I tried not to complain.
I had two blood vessels in my left eye pop, creating an almost zombie-like look. All the time I was checking in with my primary care provider Sara Fleecs or with oncologist Dr. Matthew Hill. We were on top of everything. Dr. Hill finally took me off the chemo to give my body a rest and let some of the side effects run their course and disappear.
And then on Wednesday, July 12, the left side of my face went numb while in the car on my way to dinner in Des Moines. Instead of dinner we went to the emergency room at Iowa Methodist Medical Center, UnityPoint Health/Des Moines. My blood pressure had jumped, but not to dangerous levels. After a frustrating 5½ hours there, lab work and a CT scan of my head, it was determined that I was not having a stroke. In fact, what I was having is still a mystery, and a frustrating one at that.
The next day I reported for the earlier-scheduled, post-90-days-of-chemo CT scan of my abdomen and pelvic area. And then we waited. A call from Dr. Hill later in the day gave me the news that I had no new tumors but two had a “slight progression” in growth. Since the report was not more specific than that, Dr. Hill ordered a report with a more detailed comparison of my previous scan, last April.
Overall, we all felt somewhat optimistic. No new tumors was really good news and a “slight progression” in two of them seemed manageable. We reported this news to family and a few close friends, but we waited for the more complete results and an appointment with Dr. Hill before writing this.
That meeting this past Tuesday, July 18, didn’t go quite like we would have liked. I’ve taken a couple days to process it all and am ready to move forward, first by sharing it with you all, and then by following Dr. Hill’s orders for what comes next.
The good news? There are no new tumors, and I continue to have no real “symptoms” from the actual disease, and that means that the ACC has not progressed very much. Except for the recent side effects from the chemo, I’m as healthy as someone with cancer could be.
Carla Offenburger, taking a bicycling break in the Women’s Park alongside one of the Little Miami Scenic Trails in Yellow Springs, Ohio, in June.
The more challenging news? Of four small tumors that I have, all in the general area of my abdomen & pelvis, two showed just a little growth and are not worrisome right now. Two more, one of them on the liver and one in my lower right pelvic area, grew about 100 percent from April to July. That sounds like a lot but really means they grew from being roughly a quarter-to-a-half-inch in size on up to being a little less than an inch in size. They’re not dangerous yet, but the growth indicates that the chemo drug did not work. Since we went into this knowing the chemo treatment was a shot in the dark, this wasn’t a total shock to us. It was, however, terribly disappointing.
We’ve learned that throughout cancer treatment, we should always be asking two questions: 1) Is it working? And 2) is it tolerable? If either answer is “no,” we’ll make changes. And Dr. Hill says that anything over a 20 percent increase in tumor size indicates the drug isn’t working.
I went through 90 days like any cancer patient does, hoping that the chemo was working, because I was prepared to answer “yes” to the side effects being tolerable. I dreamed that we would be able to continue on, without much inconvenience, and I could live my somewhat normal life. Morning walks, road trips, work, fun. You know, things we all want.
I’ve thrown myself a few pity parties, cried myself to sleep once, and sworn a lot at the painful blisters on my toes — and now I know I wasn’t getting better by putting up with them. (You can tolerate side effects a whole lot better if you know the treatment is working.)
I’ve also been overwhelmed with gratitude for my family, especially my sisters. One bought me a few long sleeve UPF-protective shirts to wear when I am walking or biking to protect my rash-covered arms. The other bought me Under Armour sandals with Velcro straps across the top so my blistered toes don’t touch any part of the sandal when I put them on. And I can’t even look at Chuck without knowing he is a warrior in disguise. He is the man with the shield in front of me and the kick in the rear to keep me upbeat and positive without end. And there are my close friends who have listened to my relentless whining over the past few days. I am blessed beyond measure.
So, we’ll keep moving forward. Chuck and I are reminding ourselves of a nugget from the book “50 Days of Hope: Daily Inspiration for Your Journey through Cancer,” which I continue to read over and over. The nugget? “Don’t deny the diagnosis, (but) defy the verdict.” We are focused on living by that.
Here’s where we are headed as we defy the verdict:
Dr. Hill has taken me off the chemo drug trametinib permanently. He says it takes about three weeks to get a drug like this out of my system, so the blisters should clear up in another week or so.
During this “resting” period for me, Dr. Hill is going to be busy. He has referred my latest scan and report to liver surgeon Dr. Qasim Chaudhry and radiation interventionist Dr. Olaf Kaufman at Iowa Methodist in Des Moines, both of whom have done procedures on me in the past two years. Drs. Chaudhry and Kaufman will determine whether either or both can do further work on the tumors, especially the two more active ones. Dr. Chaudhry will be considering whether he could remove the tumor from the liver, and Dr. Kaufman will probably be considering whether he can do another “ablation” on any of the tumors — using long needles for freezing or burning them so that they dissipate.
And Dr. Hill has already started looking into the chemo drug “keytruda” for possible treatment. The genetic work-ups I had in late 2015 will be used again to see what cancer “mutations” are present in my cells and if they could be effectively treated with keytruda. This drug would be administered by infusion every three weeks. As with any chemotherapy treatment, there are all kinds of requests and approvals necessary, so we are grateful that Dr. Hill is on top of all of this. I know and trust that he has my best interests in mind when he talks about treatment options and maintaining my quality of life. Dr. Hill is another blessing!
In the near future, we’ll have to be making some decisions — surgical procedures, new chemotherapy regimen, or both? When all this may happen is, of course, pending what is determined by the team of physicians reviewing what is best for me.
Of course, immediately after my appointment, both Chuck and I went to our computers and researched this keytruda drug. There was a great article in the New York Times about it. It was successful during its trial stages ,and has now been approved by the FDA as a drug that works on attacking tumors rather than specific cancer types. Chuck discovered that this drug is the one that former President Jimmy Carter was successfully treated with recently.
We’re doing one more thing — flying to Las Vegas in late August for a concert by Rod Stewart. (I’m a lifelong fan.) Any treatment decisions will be around this, for sure. And I’m going to keep my 6:30 a.m. walking time with Chuck (when my blisters are all healed up) and I’m going to continue to pray for courage, strength, healing and health.
There is nothing but hope in our household. Have some with us, please.