Category Archives: Suffering

The Best Christmas Gift

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On December 25th, our Nelson received the best Christmas gift anyone could ever get, from the best Giver there could ever be. He was lifted out of his pain-riddled, weakened, cancerous body and given a new life of comfort, strength and perfect health.

Here’s the story of his last 10 days:

Thursday, Dec. 15: Nelson experienced severe hip pain. Oncology doctors examined him and found he’d broken a low vertebrae but considered the sharp pain to be from nerves. Eventually the orthopedic oncologist recognized his pain wasn’t nerves at all but bone pain. He had another scan in which they found that his femur, experiencing heavy damage from the cancer, which was paper thin in some places. Immediate surgery to secure the hip and femur was recommended.

Friday, Dec. 16: This morning Nelson underwent a pinning of sorts, when doctors put a long rod/nail from his hip to his knee that would allow Nelson to keep on walking. They also secured the hip. Recovery went well and he was able to surrender his cane, putting weight on his leg normally.

Saturday, Dec. 17: Still in the hospital, Nelson and Ann Sophie were able to share dinner together in his room and had some good conversation. For the first time Ann Sophie asked, “What will we do if you don’t get better?” Nelson said, “Let’s table that until I get home again.” But it was a special evening with a special openness in their conversation. They were able to make peace with their situation, and while praying together, both of them accepted their lot. They also decided they wouldn’t ask “why.”

Sunday, Dec. 18: Though Nelson couldn’t wait to get home, they wouldn’t discharge him unless arrangements had been made to send him home with 4 liter oxygen. Although he was disappointed and hated being in the hospital, he was afraid to go home without the oxygen, worried he wouldn’t be able to breathe.

Monday, Dec. 19: He was discharged with a powerful oxygen machine and was oh-so-glad to be home again. Since he was cold all the time, he put his jacket on, wrapped himself in an electric blanket and settled into his comfortable laz-y-boy chair, concentrating on recovering from the operation.

Tuesday, Dec. 20: Nelson began changing, becoming confused, unable to connect emotionally with anyone. He slept deeply in his chair but panicked when he thought the oxygen might run out or not be powerful enough to help him. Things were changing quickly, and Ann Sophie felt she would soon be unable to care for him. She called her mom, Astrid, and pleaded with her to come, saying she could no longer be left alone with Nelson.

She decided to give him his Christmas gift early, a poster he loved that she had saved from their Hawaii apartment after they’d left in such a rush last May. Moving slowly, he had trouble unwrapping the gift. When he saw the poster, which normally would have thrilled him, he showed no emotion at all. Later he told Ann Sophie he felt like he was trying to breathe through a tiny straw and could never get enough air.

Wednesday, Dec. 21: Nelson became fidgety and restless after a sleepless night, trying always to stay awake. He wobbled when walking and became more confused. His speech was slurred and soft, and he could no longer swallow food without choking on it. A full blown panic attack was just beneath the surface, and Ann Sophie knew it. By mid-afternoon, it was evident he needed to go to the ER. Though Nelson knew this might lead to the hospital, this time he didn’t object. Ann Sophie called 911, and they whisked him away, with Ann Sophie riding along at his side. The driver remembered Nelson from his former ride in an ambulance. But this was different. As much as he wanted to stay home, this time he sensed he couldn’t go on there any longer.

Wednesday, continued: That evening I arrived from Michigan and went straight to the ER, swapping places with Ann Sophie, who had spent a long day with Nelson. Within the hour, the transport paramedics arrived to move Nelson into the hospital. He was uncharacteristically compliant about being admitted. I stayed with him overnight as staff members worked to make him comfortable. But it wasn’t to be.

Thursday, Dec. 22: As Nelson’s breathing became more labored, they decided to put a new drain tube into his left side, hoping to drain the gelatin-like substance from the lung. They were unsure if the shadows on the x-rays were cancer clinging to the lung walls or a lung infection. He began taking antibiotics. At 8:30 PM they did the catheter surgery in the room under local anesthetic, but the hardest part for Nelson was holding perfectly still for—40 long minutes. A nurse and I were both holding him steady, as he rounded his back and leaned on the side table. It was torture for him, but he did get a bit more breathing space after they began draining the globby material from his lung. Ann Sophie came and went all day, running home to feed Will and put him to bed as needed. Most of the time she walked the 2 blocks…in sub-zero weather. I stayed in Nelson’s room overnight.

Friday, Dec. 23: Doctors had lined up a brain scan, a brand new chemotherapy cocktail, a swallowing test, a lung wash, endless blood draws and the establishing of a feeding tube. The steady parade of doctors and nurses was unnerving to Nelson who mumbled, “They’ve taken everything away from me.” He struggled with an extremely dry mouth and failed his swallowing test, resulting in them taking away both food and water. And since he could no longer swallow, his meds were set aside while the nurses scrambled to find alternatives that could be given intravenously and be just as effective. Once Nelson began drifting into sleep, Ann Sophie and I sat in the twilight of his hospital room and began talking about end-of life issues. We talked about the worst case scenario and how in the world Nelson’s frail body was possibly going to withstand another, more severe chemotherapy regime. It seemed like continuing treatment simply agreeing to subject Nelson to more torture. He would never stop fighting to live, because of Ann Sophie and Will, but the decision was in her hands instead. Both of us cried as we finally admitted that Nelson’s life on earth might soon be over.

Friday, continued: And then Nelson had a panic attack, again feeling like he was suffocating. The nurses worked hard to quiet him, as did we, and a dose of Ativan helped. But shortly thereafter, his panic level rose again, this time to new heights. He forced himself off the bed and went to his knees on the floor. I thought he’d fallen. But he pressed his head against the edge of the mattress and though he couldn’t talk above a whisper, this time he cried out loudly, “God help me!” The room quickly filled with eight medical experts who all agreed he needed the ICU. Once there, this new staff settled him quickly with IV meds. And the head doctor asked for a conference with Ann Sophie and me. His question was, did we want to sustain Nelson’s life with artificial means, if it became necessary?

Friday, continued: Because of our discussion a short time beforehand, she was ready with her answer, given in tears. It was a no. The doctor told her that her decision was the best gift she could ever give her husband. It had been extremely difficult to come to it, but it was the right thing. I was so proud of her. After we decided on “comfort measures” for Nelson, Ann Sophie and I headed to Nelson’s room.

The minute he saw her, he once again threw his legs over the edge of the bed and this time, he threw off his hospital gown and reached for her. She kneeled down in front of him and he wrapped her in his arms, casually saying, “Hi!” The busy staff all giggled at his changed demeanor, so happy to see him happy at last. This was his last spoken word.

Most of Nelson’s lines/tubes were removed and all further testing and procedures halted. Ann Sophie, Astrid and I all stayed overnight in Nelson’s ICU room. He was receiving morphine and ativan through an IV port and began resting well for the first time in two weeks.

Saturday, Dec. 24: Since Nelson had no additional medical needs except to be comfortable, they moved him back to the oncology floor to free up the high-tech, in-demand ICU bed. It was a large room with two picture windows and many chairs. Pastor Kevin and his wife Heidi arrived and with Nelson’s guitar, they initiated a singing session of Christmas carols and hymns. We all hoped Nelson was enjoying the music as he slept peacefully. As we went into another long night, his appearance began changing dramatically. We spoke lovingly to him, offering comforting Scriptures and talk of heaven and what life there would be like for him. His nurse looked in every five minutes, offering pain meds as needed. The nurse made up the couch/bed for us and Nelson breathed shallow but regular breaths all the way till morning.

Sunday, Dec. 25: Christmas Day dawned icy cold with grey skies. Nelson was still breathing regularly, though not deeply when suddenly his breaths became like tiny wisps of air. Ann Sophie rushed to the hospital from home, and as we whispered loving words and our goodbyes, he slipped away peacefully.

The hospital let us stay with Nelson’s body as long as we wished, and we enjoyed three hours of talking and thinking together—Ann Sophie, her parents, little Will and me. It was obvious to all of us that Nelson was not there with us. Soon one of the hospital staff arrived and offered to make a print of Nelson’s hand for us. Ann Sophie and I had both had long stints of time sitting with him and holding his hand. Several times in recent days he had asked us to please hold his hand, which was our great pleasure. As the lady painted his hand with invisible ink and pressed it onto a paper, I thought of the hard working Nelson and all the good he’d done with his hands:

“Whatever your hand finds to do, do it with all your might.” (Ecclesiastes 9:10)

                                                                                                                                                     Nelson’s funeral will be held on January 7 at 
Ranfranz & Vine Funeral Home, 5421 Royal NW, Rochester,
MN 55901
Visitation will be at 10:00 AM, Service at 11:00
In lieu of flowers, contributions can be made to Northbridge Church
1925 48th St. NE, Rochester, MN 55906
or to the family

 

 

Surprises–Good and Bad

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Christmas time is full of surprises, most of them good. But 48 hours ago Nelson got a surprise none of us would want. After an exhausting day of appointments at Mayo Clinic there in Minnesota, he found himself being admitted to the hospital—his absolute last choice of things to do at Christmas—or any time.

He’s had new breathing struggles with his lung cancer, and on top of that, he’s been suffering severely from what appears to be breaking bones. It began with a neck bone, which finally healed after about six weeks of misery, followed by breaks in a rib, a back vertebrae, his pelvis, hip, and most recently, his knee. Each of these has been accompanied by relentless sharp pain, though Nelson has done a stellar job of remaining on his feet with the assistance of a cane, and staying as active as he can be.

Last week doctors intensified their testing of the bones and learned that the cancer cells have been doing their dirty work on the marrow, weakening the bones to the point of fractures. The doctor said he shouldn’t be putting any weight on his right leg where most of the pain is, because x-rays showed his femur had dangerously thinned and in some places was actually paper-thin. This is when they admitted him to the hospital.

Doctors weren’t sure he could withstand surgery because of his many risk factors, especially his breathing issues, but there wasn’t much choice. So yesterday they operated, putting a long rod into his thigh and stabilizing his hip so it won’t fully break. Nelson did great after the surgery, and Ann Sophie has been in there fighting for her husband’s welfare at every turn, morning, noon and night.

It’s not a surprise that Nelson is angling to get discharged ASAP, but doctors have found a puzzling white substance on the wall of one lung and believe that whatever it is, this is what’s causing his new breathing troubles. So of course they won’t let him go home until they can figure that out.

Meanwhile, little Will just turned nine months and is enjoying his first sled ride. Ann Sophie’s mom and dad, a couple of very hearty grandparents, are working hard on the home front to make everything run smoothly. I marvel at how their cheerful spirits and big smiles never end. Surely their heavenly crowns will be loaded with jewels!

Nelson’s repaired leg can now bear his weight, and he can walk, with the stabilizing support of his cane. His immuno-chemo pills have been temporarily set aside while he recovers from surgery. And yesterday, the cancer itself got a surprise. While the surgeon was inside Nelson’s leg, he zapped all the cancer cells with radiation. At least those cells won’t have their way with Nelson.

We all thank you greatly for your prayers as you battle this terrible disease shoulder-to-shoulder with us. Those prayers are the best Christmas gift ever!

“Answer [us] when [we] call to you, [our] righteous God. Give [Nelson] relief from [his] distress; have mercy on [him] and hear [our] prayers.” (Psalm 4:1)

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)