Category Archives: Suffering

A Moment of Truth

Posted on by

As Nelson wrote in his last blog post, he’s looking forward to the scans that are scheduled to happen this Wednesday. It will have been six weeks since he started taking the immunotherapy pills (two each day), and the upcoming scans will be a moment of truth: Are the pills working or not?

In recent days Nelson has been feeling almost like his old self, breathing well without extra oxygen, cutting back on the pain pills, sleeping less, and dealing with only mild nausea. But as is true of this cancer, no matter how good he feels, there’s always a new crisis quietly brewing in the background.

On Friday, September 16, he, Ann Sophie, and Will drove the 80 miles to Luke’s house to spend a quiet weekend away from the apartment and from all things medical. But during the night, Nelson spiked a fever (102.7) accompanied by chills so powerful he shook all over. His oxygen slipped to 80 with a heartbeat of 160.

 On Saturday, the high fever and chills returned, prompting them to call back to Mayo’s for a doctor’s opinion. Their advice was for Nelson to head for the ER…again. So they left Luke’s in a rush, and he was checked into Emergency by late afternoon.

It was another nine hours before doctors finished all their tests and had the results in hand. Since his numbers seemed to be where they’ve been recently, many in the normal range, they weren’t sure what was causing the fevers, chills, fast heart, and low oxygen.

A thousand mg of Tylenol brought the fever down, but they hesitated to let him go without a reason for his symptoms. They did have a couple of ideas, though. The doctor told Nelson, “These pills you’re taking (immunotherapy) are hard core drugs.” In other words, it’s possible the weeks of taking them have accumulated somehow to now cause his body to react negatively.

Their other idea was that his cutting back on the opioids might be causing the same withdrawal symptoms as any addictive drug would cause.

Nelson hoped not to be admitted to the hospital again, and though the doctor suggested an overnight stay for monitoring, he chose instead to head home. But that wasn’t the end of it.

Today the fever and other symptoms have returned, and though Ann Sophie urged him to return to the ER, Nelson wanted to battle it out at home. They did call the doctor, who suggested they “pause” the immunotherapy pills for now. Nelson has four appointments at the Clinic this week, and as always, the medical staff will be current on all that’s occurred in these last couple of days.

While these new negative developments hang over Nelson and Ann Sophie, they did get some good news at the ER. A scan showed that the initial tumor, the one that has been causing Nelson to cough till he wretched, has shrunk by nearly half. We like to think that surely those powerful little pills are, indeed, beginning to overwhelm the cancer. His coughing has almost completely stopped.

Another plus is that his severe neck pain of a couple of weeks ago is gradually improving. They don’t know conclusively if it was a broken bone or cancer in the spine, but whatever it was, it’s been able to heal itself. This is refreshing news.

And so we await this week’s appointments, hoping for new hope—and a very positive moment of truth.

“Be strong in the Lord and in the power of his might.” (Ephesians 6:10)

Happy Encounters

Posted on by

Last week little Will’s grandpa got to meet his first grandchild, who is almost five months old.

When Ralph arrived from Germany, he also got to be reunited with his wife Astrid, his daughter Ann Sophie, and his son-in-law Nelson. It’s difficult to understand what’s happening in the little apartment in Rochester, Minnesota, from 4300 miles away in Europe.

But now Ralph has adjusted to the medically-oriented lives of his loved ones and how things work at the Mayo Clinic. Like the rest of us, he’s learning that by the process of elimination, doctors figure out what something isn’t, before they determine what it is. And this process can be frustrating for all of us.

Last week, Nelson’s vomiting and diarrhea had increased to epic proportions. Doctors thought it might be a response to trace remnants of the chemotherapy drugs mixing with the new immunotherapy drugs. Or it might have been Nelson’s reaction to the new immunotherapy as his system tried to switch from chemo to that.

They drew blood again (almost a daily occurrence) and finally discovered he had a bacterial infection of his digestive track, which was evidencing itself in the vomiting and diarrhea. Several days after he began antibiotics, though, the vomiting and diarrhea began decreasing—much to everyone’s relief, especially Nelson’s.

Throughout this time, he’s been taking the two pills daily that make up the targeted immunotherapy, and yesterday he spent time with the head oncologist on his case and another doctor. They were both pleased about where he is with the new therapy but will keep it at a half-dose for a while longer.

In meeting with pulmonology, they learned that about 150 milliliters of fluid are still “caught” in pockets at the bottom of his right lung. Though they tried to drain it out, the regular suction method failed. They may try to get it with a needle.

If they succeed, then they’ll also remove the catheter on that side and close up the wound. The left lung still needs draining daily, and Ann Sophie does that with excellence. It remains a mystery why the right lung had initially produced lots of fluid and now has dried up, while the left lung, which hadn’t produced much for many weeks, now has more.

But that’s the way it is in the world of medicine. One issue gets sorted, but then another one appears. But we have faith in the doctors we’ve worked with thus far and have seen their expertise and determination in action. Their goal is to resolve Nelson’s cancer symptoms and the side effects from drugs until the immunotherapy and his own immune system can overwhelm the cancer. And what a happy day that will be!

“My Child, never forget the things I (the Lord) have taught you. Store my commands in your heart. If you do this, you will live many years, and your life will be satisfying.” (Proverbs 3:1-2)

Moving Forward

Posted on by

It’s been a busy medical week for Nelson and Ann Sophie with multiple appointments at the Mayo Clinic. Today is day #10 of Nelson’s targeted immunotherapy treatment, and like everything else, there’s an upside and a downside.

The upside is that it’s (hopefully) targeting the cancer cells in Nelson’s body, teaching his own immune system to fight back. The downside is that in these last days, after having had only mild nausea on the immunotherapy, now he’s vomiting again with greater intensity. Though Nelson had been off of all nausea medicine, not needing it, now the strongest of three med choices still isn’t helping.

In addition, his legs have become more swollen than ever (he called them tree trunks), so one appointment this week was to alleviate that. He received an IV combination of albumin (protein) and a diuretic to drain some of the fluid, which is leeching out of his veins and settling in the tissues—thanks to the cancer. The IV infusion lasted about an hour.

Since the IV, Nelson has lost eight pounds of fluid, which helped his swollen legs some. He’ll receive a second IV diuretic along with more albumin on Monday. If fluid continues to drain from his legs, bringing them closer to normal size, Mayo’s will custom-make compression stockings for him, which should help in the future.

Nelson’s left arm is also swollen, but for a different reason. A sizable blood clot is inhibiting the circulation in his arm by clogging three veins near the shoulder. (See picture.) But we learned something phenomenal about the human body today.

The doctor said that in two-thirds of people who have blood clots, the clots never resolve, even with blood thinners. In those cases, then, the body gradually begins to reroute the blood to nearby veins, expanding their use enough to move blood around the clotted area. (See the doctor’s pencil lines on picture.)

Nelson and Ann Sophie actually got to see these new veins in imaging tests today. To prevent additional clots, Nelson has learned that he’ll be on blood thinners for the rest of his life.

His medical team began the immunotherapy with a half-dose ten days ago, waiting to see if his system could tolerate it. The plan was to move to a full-dose regimen this week, but because of all the vomiting, that strategy is on hold for now. He takes one pill every morning exactly two hours after eating, and another every evening in the same way, putting the pills 12 hours apart. Ann Sophie has become a clock-watching cook and follows medical instructions perfectly.

Nelson says Ann Sophie could be an official member of the palliative care team with her expertise in administering meds and caring for Nelson’s every need, making him as comfortable as possible. She is still expertly draining his left lung daily, as well as managing their extensive home pharmacy of pill bottles. And she’s his strongest cheerleader throughout every day, without fail. We are all deeply gratef for her.

“May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope.” (Romans 15:13)