GUEST ESSAY: What do you do when you get the recommendation of hospice?

Carla at home in January. 

You can imagine how quickly your mind can wander in the wrong direction. And then I stopped!

BY CARLA OFFENBURGER

We won’t forget the date. Aug. 20, 2020. We won’t forget the message.

On Thursday, Aug. 20, I was to have a routine visit with my oncologist Dr. Matthew Hill, of John Stoddard Cancer Center at Iowa Methodist Medical Center in Des Moines. Plus another regularly-scheduled infusion of my immunotherapy drug Keytruda. We knew the conversation would include when I would undergo a CT scan to see if Keytruda, the “last known option at this point,” was working or not.

In mid-May we had learned that my previous immunotherapy drug, Nexavar, was not working, hence Dr. Hill sought access and approval for Keytruda.

While Keytruda doesn’t have any record of success with adenoid cystic carcinoma, the cancer I’ve been dealing with for 11 years, the drug has been used successfully in treating lung cancer. Tumors in my lungs have been Dr. Hill’s biggest concern. We had nothing to lose. I started the every-three-weeks infusion sessions in June and was thrilled with the lack of side effects. So we’ve known all summer that Keytruda was most likely the “last opportunity” for me.

Last Thursday got blurry quickly. I complained to Dr. Hill about being out of breath a lot, and in fact, I was out of breath when I was complaining. The walk from the parking lot to the office to the exam room had worn me down. And then I had to give my health update, which requires a lot of talking, and doing that takes my breath away too. Dr. Hill was immediately concerned about the possibility that blood clots could be forming and causing my breathing issues. He wanted a CT scan ASAP.

So his scheduler, Christy, worked her magic and got me in immediately for a CT angiography, which is an enhanced CT scan that looks for blood clots. This scan would also show us if Keytruda was working. Dr. Hill ordered a hospital transporter to get me from the cancer center to Iowa Methodist’s  radiology intervention area. He didn’t want me walking that far.

While we waited for the transporter, we finished our consultation with Dr. Hill with the discussion of “what next?” My husband Chuck and I were clear: If Keytruda wasn’t working, we’d move forward into God’s grace, having exhausted all other treatment options. Dr. Hill agreed. He thought any options that might be at all “long shots” would kill me. I’m too thin and too weak. It was a sad meeting. I cried.

The scan went smoothly.

While we awaited results, we found Chuck some lunch, I fed myself via my feeding tube, and we hung out in the Iowa Methodist parking lot, hoping Dr. Hill would receive the scan results and he could give them to us face-to-face. We also put the scheduled Keytruda infusion on hold, waiting to see if it would even be necessary.

After waiting a couple hours with no report yet from the radiologists, we decided to drive on home. Dr. Hill then called in the early evening with results we didn’t want to hear.

Starting down our new road of reality

The Keytruda had not been working and my tumors are slowly progressing, although one in my spleen has grown one-third larger since my May scan.

We’ve always known a day would come with results like this. Alas, here we are.

We had our second honest and open discussion of the day with Dr. Hill about what we already knew — we’ve gone through all my treatment options with no success. It was time to acknowledge that anything left to do or try would be a death sentence for me. I am too weak for any surgeries. And whatever chemotherapy Dr. Hill could consider would be equally a deal breaker, making me too sick, ruining my current quality of life and, ultimately, probably kill me.

Dr. Hill recommended I enter into the UnityPoint Hospice program. He strongly encouraged us to view this as the first step in what could be a long relationship. He made it clear that patients can leave hospice if they think it’s not needed at some point. He said he’ll continue to research whether there are any breakthroughs in ACC research, and urged us to do the same. But bottom line, he said getting into hospice early and getting comfortable in it will make “the end” easier for all involved.  We asked him to go ahead with the referral.

Chuck and I, of course, cried and hugged when we got off the phone. And then we did what we do best — started planning, started visualizing. And we started down our new road of reality.

When we really analyzed what I’ve been through in the past 10 months or a year, we realized that I’ve been taking strong drugs that have not been successful. My tumors have been slowly growing. Now, they’ll be slowly growing (and we hope very slowly) while I “live life like you want, until you can’t,” as my primary care provider Sara Fleecs, in Jefferson, put it to me in a phone call after she received our news.

And I’ve been living a pretty good life lately, all things considered. With COVID-19 a major threat to someone in my condition, I have been living a pretty secluded life since last March. Oh, I’ve reached out a bit farther recently, but I avoid most crowds and most opportunities to be “out and about.”

I have really enjoyed my quilting, reading, walking on the Raccoon River Valley Trail, and keeping my flower gardens watered. I have made real quality time to spend with my closest friends and, of course, my family. I advocate at every turn to see my granddaughters. I am in total joy sitting on my newly screened-in front porch with a good book, a view of my gardens and with my mother, Sue Burt, in the chair next to me.  Life is good, folks.

Wow! Talk about feeling loved

But what do you do when you get the recommendation of “hospice?”

You panic a bit, you think of the outcomes you’ve known from those you’ve followed through hospice. You try to breathe. Last Monday, just four days after having been referred, Hospice nurse Molly McPherson Ritter, who lives in nearby Scranton, was in my living room ready to introduce herself and the program to me.

I was very comfortable with Molly, who will be by my side, for what we hope is a long time. And she’ll oversee my care with a care team — Molly, other hospice workers (aides, social workers and therapists), the hospice medical director, my pharmacy, my primary care provider Sara, and if/or when needed, Dr. Hill.

Molly will visit every week, take my vitals, review any other health needs I might have, and monitor my overall health. I will also have a home aide who comes in once a week to help with some light housekeeping. I’ll have access to a massage therapist. I’ll have a team available 24/7. Wow! Talk about feeling loved.

Molly made her second week visit this past Monday and it was perfect. She got me a bit more comfortable. She answered my questions and concerns, and she talked me through some anxiety.

A lot has started running through my head when hospice entered my home. I started by making serious “final” to-do lists (life insurance policy checks, funeral arrangements, financial plans, etc.).  And then I found myself growing a bit more anxious — do I need to buy two tubes of toothpaste or just one?  Or, should I really buy new walking shoes, when the ones I have will probably see me through? I cleaned out a few dresser drawers.

You can imagine how quickly your mind can wander in the wrong direction. And then I stopped!

I started cutting fabric for my next quilt, started a new book, took a walk on the trail with friend Nancy Teusch. And I ordered the walking shoes!

I’m committed to being present for this next stage in my dance with cancer. Honestly, it’s an opportunity most of us don’t get — being present in the time of our dying.

I’m also committed to spending more time looking for all the good in my life and hugging it tightly.  I hope you’ll do the same with me.

Former Storm Laker Carla Offenburger and her husband Chuck live on a farm near Jefferson.

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