Category Archives: Life’s disappointments

Try not to worry…

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This is Nelson’s mom Margaret, writing for Nelson tonight. I’ve been here in Minnesota for a few days, enjoying the company of Nelson, Ann Sophie, little Will and his other grandparents, Astrid and Ralph, from Germany.

Since Nelson last posted a blog, he and his family have made the move from a rented apartment to the new home they’ve bought. Owning a home that’s two blocks from the many buildings of the Mayo Clinic is a big advantage for someone who finds himself needing the services there, many times each week. For example, Nelson has one appointment tomorrow and four more on Friday. But as a result of him being so frequently at Mayo’s, his cancer cells are on the run. And that’s the whole point.

But none of it comes without a price. The stronger the treatment, the harder to bear. After weeks of taking the daily doses of two powerful immuno-chemotherapy drugs, Nelson’s liver had recently begun to show signs of deterioration. His medical team decided to give his suffering body and his liver a week-long break, hoping Nelson and his liver would both benefit.

During this time, Nelson felt much better—except for the severe pain in his hip that radiates down the back of his leg. This pain began in his lower back where scans showed cancer cells in his bone marrow weakening the bone and causing a vertebrae to crack. That pain then radiated gradually toward his hip, and eventually down his leg.

There is no spinal stenosis, for which we’re happy, but Nelson’s pain has been debilitating. Scans show the cause as a pinched nerve between the spine and the pelvis. He can’t walk except with his new cane—a lifesaver. Without that, he wouldn’t be up and about, so the cane is something to be grateful for.

Scans have also shown that the bone marrow is breaking down in other places in Nelson’s body too, so we’re all praying against any more of that, and against worrying about it, too.

On Monday, the doctors put Nelson back on those powerful drugs that always take him down with high fevers, sudden shaking chills, and lots of vomiting. But same drugs also kill cancer cells. The doctors altered the dosage slightly to determine which of the two drugs is the one harming the liver. Despite acute suffering while formerly on these drugs, Nelson was all “yes” on resuming them. It’s a love-hate relationship but is the only medical tool left in his toolbox.

Despite all that, last night God gave Nelson the best night’s sleep in a long time (in the chair), and this morning he felt well enough to head for the basement in the new house (actually an older home) to do some work on shelving. Days of this kind of energy are few and far between, but when they come, they bring joy and encouragement.

In Nelson’s last blog he shared about an infection in his left side around the catheter they were using to drain his lung. They prescribed antibiotics, and those have worked their magic. The infection is gone, and the redness, too. The right lung catheter has been reinstalled and is once again being drained daily (250-300 milliliters).

Ann Sophie’s parents, Astrid and Ralph, have worked like troopers the entire time they’ve been in the USA, cooking meals, babysitting, chauffeuring, packing, unpacking, shopping, painting, helping in every way imaginable. They are amazing all of us as they bring their stamina and strong work ethic to every task. Ad their willingness doesn’t end.

Today, Ann Sophie and I had fun unpacking a few more boxes and rearranging  the sunroom, which for now is baby Will’s new bedroom. It’s a cooler place to sleep, but his new sleep sack keeps him toasty warm. Despite the serious nature of these difficult days of dealing with cancer, having Will in the middle of things brings laughter and light-heartedness to us all. He helps us remember that God’s instructions are:

“Do not be anxious about tomorrow…” (Matthew 6:34)

A Moment of Truth

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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)

Moving Forward

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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)