The dominoes fell.

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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

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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.

He’ll stay in the hospital overnight so he can be watched carefully by a trained staff rather than an untrained Ann Sophie and Margaret.

Then tomorrow morning he’ll be discharged before 8:00 AM, and a new day of appointments will begin.

 

“Let your eyes look directly forward and your gaze be straight before you.” (Proverbs 4:25)

A Demanding Day

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This morning Nelson was scheduled for a scan of his superior vena cava, one of the main veins flowing into the heart. Among Nelson’s problems is a narrowing of this major vein at the critical juncture where three other veins join. It’s much like three rivers coming together and flowing collectively back to the heart: one from each arm and a third from the head.

In Nelson’s case, there is a small mass trying to take over  that critical space where the three veins merge. As it’s been growing, the pressure of the mass on the vein has been threatening to seal it off entirely.

This morning’s scan showed that what doctors suspected was true, and this important vein was at risk of closing or clotting. “If those things happen,” the doctor said, “we’ll have a more complicated problem.”

After today’s early morning scan, we made our way to the radiology department to find out if radiating several of Nelson’s hurting bones would relieve his pain.

Our group included Nelson, his wife Ann Sophie, baby Will, Nelson’s sister Linnea visiting from Florida, and me. Mayo Clinic welcomes one and all, and they had no problem with us all squeezing into the small exam room.

During the next hour the doctor gave us an hour-long course on radiation therapy and where it might help Nelson as we wait to begin systemic treatment.

Today his pain has escalated considerably, reaching 10 on the pain scale, unless he’s under the influence of powerful pain meds. Even then, it only calms to about a six.

His breathing has become intensely difficult again, despite yesterday’s draining of the lungs, and he felt faint, like his heart was ready to malfunction. He said he hoped not to have to go to the ER tonight for the third time in two weeks for breathing issues, but thought it was possible.

The doctor showed us scan pictures with highlighted places where cancer was metabolically active, i.e. growing, and suggested where radiation might  arrest it or even shrink it. Nelson was reluctant, wanting to wait until the big picture treatment goes into effect in another week or so.

After this appointment, we made our way through a maze of long hallways to a different Mayo building to meet with a doctor who for 21 years has worked at Mayo putting stents into veins and arteries.

He showed us the scans of Nelson’s troubled vein (white up-and-down stripe in the picture) that had been taken earlier in the morning. The narrowing of the vein was evident. He suggested that the lack of circulation in the superior vena cava might be the reason Nelson is coughing uncontrollably. It also might be contributing to his feeling of panic over not being able to get a good breath.

After talking with Nelson for 30 minutes, the doctor’s assessment was that he should perform surgery to install a stent a.s.a.p. and get that blood flowing properly again. At the conclusion of our meeting, we listened in to multiple phone calls between doctors on Nelson’s team while we waited for their final decision. The result was that they wiped away tomorrow’s multiple appointments in favor of the stent surgery.

The schedule was quickly rearranged, and the surgery was set up for tomorrow. It will take place under full anesthetic in one of the hospitals here, and may involve an overnight stay, depending on how he does. We are glad this operation will take place and that the doctor who will perform it has two decades of stent-experience.

By this time in Nelson’s long, exhausting day, he gratefully accepted a ride to navigate the many endless halls and tunnels of Mayo’s different buildings. The staff quickly pulled up a wheelchair complete with “an escort” with a happy disposition who pushed so fast I could hardly keep up.

Next we proceeded to the lung doctor who had pulled fluid from Nelson’s lungs yesterday, wondering if the process needed to be done again, since his breathing was extremely labored. But this doctor  told us his lungs hadn’t accumulated enough liquid to need draining before tomorrow’s surgery. He, too, made phone calls to other team doctors as they discussed Nelson’s case.

From there we wheeled our way to another building for a pre-op Covid test. And after that, at long last, we rolled toward the car. Nelson was thoroughly worn out but was also encouraged because of the upcoming surgery. May the Lord look with favor on this son/husband/father as he goes into tomorrow with hope in his heart and confidence in his God.

“Do not throw away your confidence. It will be richly rewarded. You need to persevere so that when you have done the will of God, you will receive what he has promised.” (Hebrews 10:35-36)