Palliative Care

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Being a non-medical person, I didn’t know what the word “palliative” meant until Nate had his cancer. The hospice people were using that word, so finally I looked it up. Palliative care is medicine or a medical treatment that lessens pain or other negative symptoms, without dealing with their causes.

When Nelson, Ann Sophie, Will, and I first got to the Mayo Clinic, one of the many doctors we saw mentioned that they were setting up a meeting with the palliative care people. Nelson’s immediate response was, “Well, I don’t think we need that, do we?”

Like me, he was thinking back to when his father had been in his final days of cancer and the nurse brought up palliative care. In other words, she was letting us know there was nothing more they could do for Nate except to mitigate his suffering. She called it “comfort measures.” That, they could do.

But the meeting at Mayo’s was scheduled for us anyway, and we met with the head palliative MD yesterday. As always, little Will came along and brought sunshine into the small exam room, charming the lady doctor with his smiles.

Ann Sophie, constantly thinking ahead, had packed Nelson’s medications in her bag and when asked the first question, she reached in and pulled out the prescription bottle the doctor was asking about. “I just brought them,” she said, “in case you needed to see them.”

In less than a minute she had them all lined up on the exam room bench, grouped by category. The doctor was impressed (as were Nelson and I), and it turned out to be a big help to have the bottles there. Though this palliative expert had all these same drugs on a computer list in front of her, she quickly pivoted to the bench-with-bottles to study labels, count remaining pills, and ask questions about their efficacy.

Dr. Christiansen spent well over an hour with us. First and foremost, she wanted to know how Nelson was feeling. What were his most bothersome symptoms? How did his current condition compare with weeks past? Did he need to continue all the pills, or could some be eliminated? Did he have questions about the many drugs he’s taking?

She took time to listen carefully to his answers, once in a while turning toward her computer to tap out notes.

Then she turned to Ann Sophie, asking how she was coping with managing all the pills and their different stipulations. Ann Sophie had her questions ready, and Dr. Christiansen had a detailed answer for everything any of us asked. She was profoundly knowledgeable about every drug, their different uses, and why each was prescribed for Nelson.

When we left, it turned out that the palliative care appointment Nelson didn’t think he would need had been very useful. Best of all, though, was when Nelson said, “I know one thing for sure. I feel a lot better now than I did a couple of weeks ago.” And beneath that heartening statement was the valuable care of palliative medicine—along with a few comfort measures from another source:

The Lord is “the Father of compassion and the God of all comfort, who comforts us in all our troubles…” (2 Corinthians 1:3-4)

Inventory by Nelson

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Sitting here today I ask myself if it’s really true. “Do I really have lung cancer? Is it really stage 4? Are the stats really as bleak as I hear they are? Do I have this death sentence on me that everyone understands but only I fail to fully grasp?” I wonder if I HAVE completely comprehended it. I no longer have the thought that maybe I’ll wake up and and discover it’s all only been a dream. 

So many things have changed since this all started in March to prove it’s not a dream.

Ann Sophie and I moved from Hawaii to Minnesota. I’ve completely been unable to run or swim or exercise like I have most all my life. My lungs are filled with fluid with pain so they barely function if I do anything faster than walk. Spending the night in a chair and wandering around our apartment all night instead of sleeping next to my wife is the new norm. My Mom has virtually moved from her house in Michigan to help us get through this. She also resurrected this blog for another round of “getting through this” in her life and ours. Going to the hospital for treatment or things, treatment-related has become my new full time occupation. No other job is possible. 

But this isn’t meant to be some self-pity party at all. It’s not only difficult things that have changed. I’m just grappling with my situation and this change in general.

In Alcoholics Anonymous, they taught us that, when you find yourself being pulled toward self-pity and the negative, write up a gratitude inventory. 

Make a list of things you’re thankful for. 

It’s actually a simple thing to do. So what’s first? 

I’m thankful, mostly for Ann Sophie, by far my favorite person in the world. There is no one like her and I’m still blown away I get to hang with her every day, and now for more hours in each day than ever.

…for Willard Nelson Nyman. 

I’ve become a father for the first time at almost the exact same time I was diagnosed with Cancer. 

Every moment I get to be Will’s Dad is a good moment and no one can take those moments from back from me… or from him.

I’ve been given this sharpness having to do with my perspective on time. The idea of having “more time” is really just an idea when it comes down to it anyway. Each of us has only the moment we’re in right now, so all of us essentially have the same amount of time. I’m thankful for today.

I’m thankful it’s just the beginning of Summer in Minnesota… 

that, so far, I lived almost 50 of the fullest years a person can live. 

I’m thankful to have joined YWAM all those years ago and to have been to all those places and met all those amazing people. 

I’m grateful for the lessons I’ve learned in leadership from that place. 

I am grateful for the Mayo clinic, for talented doctors, for my cousin, Luke, who introduced me to them, 

for people who believed in me over the years and put their money where their mouth was.

I’m thankful for the God of second chances who uses even mistakes and works them together for good somehow. 

I’m thankful I wasn’t supposed to go over 500 words writing here or I might go on forever. And one last one: I’m thankful and blown away by the kindness, generosity, and prayers of all of those who have come forward and helped our little family in some way during this time.

Try it out sometime when you get down. Just write one thing after another you are thankful for. It will ignite something in you if you let it. 

“Those who sacrifice thank offerings honor me,
and to the blameless I will show my salvation.” (Psalm 50:23)

Planning Ahead

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We’re all agreed it would be nice to have no more emergencies stemming from Nelson’s lung cancer. We’ve had three visits to the ER, two hospital admissions, one ambulance ride, and a variety of crises here at home related to the above—in four weeks.

Having no more would be nice.

But cancer keeps us guessing, and this morning we had yet another beat-down moment that took us by surprise.

We had just loaded the car for a 30 minute ride to a special appointment at a distant post office. We were trying to accomplish Nelson’s chosen task for the day (a #4 on his list of goals) to deliver paper work that would eventually bring an American passport to baby Will. After all, his mama is a citizen of Germany, and his relatives there are anxious to meet him. So our errand was a future-focused undertaking of how life might be after cancer.

Nelson had started the car and was waiting for us in the parking lot. Ann Sophie brought Will out, and I followed, each climbing into our respective car doors. Then Nelson said, “Did you bring an anti-nausea pill?”

Ann Sophie said, “No. Should I go back and get one?”

Nelson flung his car door saying “too late” and bolted for the building entrance, which of course was locked. Ann Sophie realized he was about to vomit and said, “Do it in the bushes!” When he didn’t head that way, she ran ahead with her keys ready for the locked doors.

The two of them disappeared into the building just as Will began to cry in his car seat. I got out and went around to open Will’s door to pick him up, and there we were, a screaming baby and his grandma, pacing around a parking lot near a running car with all four doors wide open and no one inside.

Ten minutes later, out they came, Nelson pinching a paper towel over his bloody nose (due to blood thinners), and Ann Sophie dragging the heavy oxygen machine with its tubing, cannula, and cords–on loan from ever-helpful cousin Luke.

Nelson had made it to the toilet, his mouth filled with saliva, knowing that the retching was about to tear into his mid-section with excruciating pain and then morph into a cardiac event as it always had before. He felt he was about to pass out and asked Ann Sophie to run for the oxygen.

He took several whiffs while kneeling in front of the toilet, and in just a few seconds, the intense nausea magically disappeared. He hadn’t done any retching, there hadn’t been a cardiac event, and he felt just fine.

Ann Sophie dragged the heavy oxygen machine to the car, and while wearing the cannula, Nelson felt good enough to drive. Though we were late to the appointment, our mission was accomplished.

Such is the world of day-to-day cancer. Though we’d like to know what tomorrow will bring, that’s not how it works.

“When times are good, be happy; but when times are bad, consider this: God has made the one as well as the other. Therefore, no one can discover anything about their future.” (Ecclesiastes 7:14)