Surprises–Good and Bad

Posted on December 17, 2022 by Margaret

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…

Posted on December 8, 2022 by Margaret

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)

Til Tuesday…

Posted on November 4, 2022 by Margaret

Just an update health-wise: My left lung catheter clogged again and the small amount of fluid was fairly bloody, so we scheduled another meeting with Pulmonology. They did the same thing again, injected the drug, waited the hour, and sucked fluid out. The good thing about that is they use an ultrasound machine so you can see how much is really hiding in there.

Turns out there was 650ml of fluid on the right side that had accumulated since they removed that catheter a couple months back. To get it out, they go in your back with a needle and suck it out directly. I felt like a new man walking out of there with both lungs empty and clear.

Meanwhile, the side effects from the chemo drugs had gotten so bad, I had to take a short break. It’s a catch 22. They found what is shrinking the cancer down and if it goes like it has been, I could be in very good shape in a few months!

But starting last Wednesday, I have had steady 103 degree fevers round the clock and have been taking Tylenol to get relief, but that stopped working. I’ve a spent a few too many nights shivering under an electric blanket occasionally vomiting into a bowl to keep this going. I’m a big tough guy and all, but sometimes this thing really pushes me to my limits. I’m literally praying God will have mercy and watching the clock as the minutes drag by like hours. I’ve never had this before. I’ve been told on more than one occasion that these are heavy duty drugs and these side effects can be normal. Every time it get’s too gnarly, we go to the Emergency Department to rule out infections like the one that almost killed me in July. But then it’s back at it.

No chemo drugs and there will be no Nelson. If I keep taking the drugs, I have a fighting chance. Of course the choice is easy. It’s just walking it out that’s tough.

I have so much to live for.

So the answer? Just take a short pause once in a while like I am from now until Tuesday. It’s unbelievable how fast everything gets brighter and how fast. I feel like I’ve got a get out of jail free card, but of course those feelings support an illusion.

Feelings say, “Let’s keep doing this please! I am not sick anymore.” But of course there is a sleeping giant that would wake up and take me back to where we were in May with cancer growing in my lungs, liver, and spreading out through the bones and other organs.

I remember when I lifted my arm up and broke a rib in my back because the bones was eaten up so bad. That’s what happens. This stuff is no joke and I’m beyond grateful for the opportunity to be here doing what we’re doing. I still live for the day and when it’s a non-chemo day, I’m so happy and love to work on our recently acquired house with Annso.