Category Archives: Life’s disappointments

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 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)

Scrub City

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We’re gradually becoming familiar with our new home town here in Rochester, Minnesota. At 6:45 this morning, Nelson and I were sitting at a stop light on our way to one of several hospitals that make up the Mayo Clinic, going in for more appointments.

As we sat at the light, a crowd of medical people paraded past us wearing their work gear. Scrubs come in all colors, and as we watched, a rainbow of people in helping careers passed in front of us. Rochester is a medical town, and we’re really grateful, because we need lots of help.

It was a rough weekend for Nelson. His chronic problem is not being able to breathe well, never able to take a deep breath. There is fluid in his lungs making efficient breathing impossible. As the fluid builds, a little more each day, his breathing deteriorates. He can no longer lie flat without feeling like he might suffocate.

Over the weekend he called one of the many doctors on his team and asked if they couldn’t please drain at least one of his lungs so he could breathe better. Mayo Clinic responded quickly, coming to his rescue. They drained not just one but both lungs in a quick, almost-painless procedure, which brought a measure of relief. One lung had 1.6 liters of fluid in it, and the other over 1 liter—nearly 3 liters of fluid making it a struggle to get air. That’s about 3 quarts of liquid, pressing on all sides.

Nelson has had this procedure done twice before, and each time the “filling” of the lungs has happened over a shorter period of time. Yesterday they assured him they could redo the draining process whenever he felt it was needed. They even offered to put in a shunt so he could control it himself, but the accompanying risks were something he wanted to think about for a while.

In the mean time, we’re all grateful for the quick action Mayo takes. He has more appointments yet to come today, and the staff here continues to work on Nelson’s case from multiple angles. Waiting for the comprehensive, long-term plan to become known has been frustrating, and the doctors commiserate with that problem. But they want all the data before making the plan.

More later today about what they can do right now to ease Nelson’s pain….

“We hope for what we do not see. We wait for it with patience.” (Romans 8:25)