A Better Day

Posted on June 4, 2022 by Margaret

The good thing about a bad day is that the next one is bound to be better.

Yesterday was rough, and it didn’t end at bedtime. Nelson’s vomiting continued through the night and into the morning, a vomiting like we’d never seen before—violent and ongoing for many minutes at a time. It seemed like he would pass out at any second.

This morning as the vomiting continued along with overwhelming coughing and choking, Ann Sophie and I didn’t know what to do. His pain was “off the charts” (his words), so we contacted his medical team. The first one to respond said, “Take him to the ER.”

And so back we went for our 3^rd visit there in 2½ weeks. As we got in the car, we prayed, crying out to God to rescue Nelson—from vomiting, from coughing, choking, severe abdominal and lung pain, and inadequate breathing. Thankfully the ER was empty, and we went right in.

Several nurses and a doctor quickly focused on each problem in turn. Within an hour Nelson was breathing easier because of receiving oxygen, and his count had gone from 88 to 95. His pain was being treated with fentanyl and the vomiting with anti-nausea meds. And best of all was when Ativan diminished his panic about not being able to breathe.

Finally he fell into a sound sleep, which made me cry as I watched him. He hasn’t slept well in many weeks, some nights not at all. And always sitting straight up.

By 4:00 PM, the staff had decided to admit Nelson to the hospital for at least 24 hours to investigate the vomiting, a sky-high white blood cell count, and severe constipation from pain meds.

By 5:30 Nelson was being strapped in for his first-ever ride in an ambulance. This time he went to a different hospital, landing on a floor with only cancer patients. When he arrived, the staff said, “We are your people. We are already working with all the doctors you’ve been with so far, and we’re familiar with your medical situation.” It felt a little like coming home.

After they delivered all of Nelson’s meds along with an extra blanket, he ordered dinner (an omelette, fruit and coffee), a welcome sight after not eating anything since yesterday’s nausea had begun. But today’s greatest delight was that we had cried out to God in the car, asking him to rescue Nelson, and he did.

Though his cancer and all the harm it’s doing remains, we were encouraged to hear that this week systemic treatment will begin. And our hope is that it won’t include vomiting.

“Because he holds fast to me in love, I will deliver him. I will protect him, because he knows my name. When he calls to me, I will answer him. I will be with him in trouble. I will rescue him…” (Psalm 91:14-15)

The dominoes fell.

Posted on June 4, 2022 by Margaret

Everyone has days that click along well without any stumbles, and we’ve all had days where nothing goes right. Sometimes it feels like a line of dominoes falling, the first one dictating the fate of the rest.

That’s the kind of day we had today.

We started with early alarm clocks and Nelson’s first medical commitment of the day at 7:45. This was tricky, because after yesterday’s surgery to put a stent into his vein, in the morning he was still a patient at the hospital. We asked if today’s early appointment could be moved to another day so he could rest a few hours more, but at Mayo Clinic, appointments with doctor-experts are hard to arrange and must be kept. (That was like falling Domino #1.)

The nurses rushed him through the discharge procedure, and he was at the curb in a wheelchair as I arrived in the car at 7:30. We drove through the maze of hospital buildings and parking lots, which are now becoming familiar, and he made it to his first appointment only a few minutes late.

Back in February, while Nelson and Ann Sophie were still living in Hawaii, his first symptom of a crisis had been a swollen thyroid gland. Initially, doctors had focused on that, diagnosing thyroiditis. He took meds for it then was taken off the meds, and the thyroid calmed.

Today we met with an endocrinologist who interpreted Nelson’s Mayo tests for us, and his thyroid gland is on schedule in a recovery. During our meeting, however, Nelson’s lung pain began to escalate beyond what he could manage, and just as he was planning to bolt from the room to cope with it (Domino #2), the meeting ended.

We went home to rest, but Nelson’s chronic cough, part of every day since early February, began to escalate. When a series of coughs starts, he becomes completely overwhelmed and can’t stop. He doubles over in pain that races around his rib cage and through his lungs, labeling it “unbearable.” (Domino #3)

He got no rest during our break from appointments because of the coughing (Domino #4), and sweet baby Will was having an off day, too. He cried more than usual and slept less, adding to everyone’s stress. (Domino #5) But by 1:45 we were back in the car heading to the Mayo campus for Nelson’s first radiology session.

Immediately on the heels of that came a consultation with an oncology radiation doctor who will oversee Nelson’s care in this area. He explained about radiating hot spots like the ones that had just been treated in his spine. Five different vertebrae where cancer has appeared on the bones were radiated today.

Before we left, Nelson explained to the doctor that the powerful pain meds he’s on were doing nothing for his excruciating pain while coughing. (Domino #6) Worse than that, though, was that the drugs were frequently wearing off half-way through the four hours they were supposed to cover. Nelson had to watch the clock, minute by minute, while suffering badly until the moment when he would be allowed to take another dose. (Domino #7)

The doctor agreed to add a different drug to Nelson’s regimen, this one with a touch of morphine in it—two pills every 24 hours. We wheeled our way down to the pharmacy in the same building as the appointment and waited for the prescription to be filled. It was quite busy so near closing time, and we waited over an hour. (Domino #8) Nelson was exhausted and fell asleep in his wheelchair. I confess my head was hanging, too. All of this is tiring.

As soon as we got the new pills, Nelson took one. But even on top of the other pain meds, his coughing pain broke through. (Domino #9)

Finally we walked through the door at dinner time, but no one was hungry. Nelson’s coughing seemed worse than ever, and we talked about going to the ER. But the thought of spending the next 6-8 hours there after such a miserable day led Nelson to say no. (Domino #10)

Right after that, though, his coughing began again, leading him into several terrible episodes of vomiting with lung and rib cage pain that he said was “off the charts.” (Domino #11) At midnight we went in search of an all night pharmacy for anti-nausea medicine and also a laxative, since pain pills are constipating. The ER at the hospital let Nelson in and through to their pharmacy. He succeeded in the laxative department but not in the anti-nausea. When we got home, there was more vomiting. (Domino #12)

And now comes the weekend. Nelson commented that it was almost a relief not to have any appointments for a couple of days. He desperately needs quiet down-time, and we fully intend to give it to him. We aren’t sure what tomorrow will bring, but we do know that getting there will have to be by going through another night of sitting straight up, coughing a lot, and sleeping very little. (Domino #13)

It’s been a falling-Dominoes kind of day, and we’re glad it’s over.

“Many are the afflictions of the righteous, but the Lord delivers him out of them all.” (Psalm 34)

A Young Buck

Posted on June 2, 2022 by Margaret

Any day with surgery on the schedule promises to be a long one, and ours was no different. Today Nelson had a small procedure followed by a more significant one.

The day began with a phone call from his pulmonologist who started the conversation like this: “I’m thinking no news is good news.” He had given Nelson his personal cell phone number yesterday in case he had a lung emergency during the night. Nelson had told him he felt “different” yesterday and that something strange was about to happen, like a sudden collapse.

He’d been advised that if such a thing occurred, he was to go to the ER, call this doctor, and he, the specialist, would meet him there. Since Nelson hadn’t called him during the night, he concluded all was well.

“So,” he said, “did you sleep in a prone position last night?” It’s been weeks since Nelson has been able to do that, since the fluid in his lungs has made him feel like he was drowning.

Nelson answered honestly. “No. I still can’t lie down. It was another night upright on the couch. Breathing was still hard.”

“Well,” the doctor said, “in order to have today’s surgery, you have to be able to lie flat on your back. Can do that?”

“No. Not with all this fluid in my lungs.”

“Then come over this morning, and I’ll drain them again.”

And once more we were off to Mayo’s on short notice, thankful that our apartment was only six minutes away. Nelson felt a little better after the procedure but was surprised that already, in less than 48 hours, more than a liter of new fluid had accumulated in his right lung.

He was prepped for the surgery to place a stent in his superior vena cava vein just above his clavicle bone.

All of us (Ann Sophie, baby Will, church friend Keith, and me) were allowed in and out of his cubicle while he waited for his turn in the OR.

Keith had flown to Minnesota all the way from Tennessee to put his arms around Nelson and pray with him. He also brought lunch, though Nelson couldn’t eat anything pre-op. He prayed with Nelson and said, “You’ll get through this OK ‘cuz you’re a young buck who can put up a good fight.” A young buck. The perfect description.

We could also check a “live” progress board with his number on it, supplying information about where Nelson was in his surgical day.

Several hours later, Ann Sophie got a text saying he was ready for visitors. And once again, all of us were allowed into his room—even baby Will, despite a hospital rule that no one under five could visit. For some reason, they made an exception for our little guy. (Thank you, Lord.)

Nelson’s friend Derek had also joined us, flying north from Dallas to connect with his buddy.

Nelson was glad to see all of us but was especially glad when his wife and son walked in. This man has a lot to live for, and we could see it all over his face.