Surprises–Good and Bad

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…

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)

Lots of the same but some things different…

Sitting here at Caribou coffee, trying not to spend too much time at our house in a given day. It’s just a short walk but it takes me a while to get over here because I walk at a snail’s pace. These meds are just blowing me away. I can hardly sleep at night, I can hardly stay upright when I walk, but I walked over here anyway. It’s about 45 degrees outside, which feels really nice. I’m thankful for the friends we already have at church. Kevin and his wife, Heidi are so nice. They have shown us hospitality like no other. I wonder what happens when you don’t go to church and move to a new town. You just hang by yourself, move by yourself, hire everything out to be done and pay for it. Seems kind of sterile. Since we’ve been here, they’ve been so nice and welcoming, rolling out the red carpet for us the whole time. It would have been a whole different thing without them.

I’ve been on a double dose since around last Wednesday. The hope is the symptoms simmer down a little and I can stand this combo a little longer. Nothing has changed. Taking chemo brings on life-debilitating sickness and for the moment, diminishing destruction of the cancer. It was better at first, but now, not so much.

The Doc has a similar set of drugs that will work like these 2 did at first. There’s an approval hurdle to jump through to get them to sign off on letting me us it for my type of cancer as it’s approved for something different. He seems to think we can get it if we crank this dose up and keep petitioning them to let us use it. Without approval, the insurance co won’t pay for it, which is a big problem. I’m not even sure if they would let us pay for it and use it if we had the means. I don’t totally understand all that anyway, just that it’s quite a bit of money for that stuff. Something like $12-16K per bottle of 30 pills or so. One I’m taking 4 times daily and the other just once every day.

The nausea is getting far worse. Puking daily for sure, mostly around dinner time. Hard to keep stuff down, but I’ve been taking the power shakes my Aunt Lindsey is giving me. She sent down enough of that stuff to power the whole WWF if necessary. I try to eat it, but can’t quite keep with the supply but I’m grateful to have an alternative to food because it’s a way to get down lots of calories another way.

The above shot is my side where we drain from which has become infected for whatever reason. I am taking a row of antibiotics to calm it down hopefully, but there are endless things like this that come and go amongst the bigger issues.

We opted out of traveling for Thanksgiving because I feel so lousy most of the the day and dragging the family down to Michigan in this state didn’t seem worth it. We’ll stay up here in Rochester and go to the pastor’s farm and eat steaks and chicken, non-conventional Thanksgiving style.

God is in this all somehow I am sure of that. I was awake from about 2-430am today watching a movie trying to kill time when I couldn’t sleep. Who knows what keeps me up. I’m worried about the chills that go along with the fevers that come and go. I worry about not being able to breath. Tylenol manages the fevers some, but mostly, it’s hard to keep a leg up on them and stay ahead of the game.

Annso posts more frequent updates on our GoFundMe account if you want the latest between these posts. She’s been very faithful to include the medical details and I’m grateful for that.

https://www.gofundme.com/f/8988b-help-pay-for-medical-bills?qid=2550fd0498369df5f47b9ab444d65c4e


A gift from a friend. Some encouragement which is so important to keep on truckin…