In early July, we had a “changing of the guard” at the little Rochester apartment.  Ann Sophie’s mother arrived from Germany, and I drove back to Michigan to meet up with other family.

Nelson and his family had intended to be with us after driving across the country in an RV, but the unexpected cancer and the timing of his chemo made that impossible. But Astrid’s arrival gave everyone a boost as she met her first grandchild and began lending a hand in unnumbered ways.

In early July, Nelson endured another hospitalization during which (among other things) his left arm and both legs were tightly wrapped in order to limit swelling. The blood clot beneath his left clavicle bone was hampering proper circulation.

Happily, the hospital continued to ignore the rules when little Will came wheeling through the oncology halls to visit his daddy. Though children weren’t allowed, eventually he won them all  over.

                                                                >>>>>>>>>>

July 10, 2022:

Second Chemo down, 2 more to go on this round. Been puking.

Astrid is here with us. We talk about leaving the familiar and setting out for the unknown. They are similar to us.

I just spent about 45 minutes out on the porch thinking about Hawaii and going back there or not to get our stuff. As much as I want to go back and collect the stuff, I can’t justify $1600 on tickets to get some tools and a few kitchen supplies. It’s only stuff.

Jesus said, “Take heed, and beware of covetousness: for a man’s life consisteth not in the abundance of the things which he possesseth.” (Luke 12:15)

I gave Dani Fuchs my Ruckus moped because I felt God told me to do it. We have to decide what to try and get back from Hale Ola, and what to just let go. We can donate things as a sort of tithe, although the lines get grey with what’s fair and what’s greedy on prices, etc. Money is really something that shows the condition of the human heart. We all seem to fall short in that area.

                                                      >>>>>>>>>>

“The blessing of the Lord makes rich….” (Proverbs 10:22)

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…

Today I had a couple scans that yielded mixed results.

Basically they are mostly positive. There was one spot that grew, some new growth that wasn’t there last time around, but mostly others either didn’t grow or shrunk. 

Dr. Mansfield wants to double the chemo medication dose and attempt to deal with the side effects. He thinks the cancer is changing and adapting to the drugs and we’ll get one more boast from the current stuff if we double the dose for now. 

Meanwhile, he wants to appeal for this other drug cocktail that’s been approved for Melanoma but not for the type of lung cancer I have, but he says it will work just as good and the cancer doesn’t “know it” yet. Also, he thinks I’ll tolerate those drugs better. 

The insurance company will reject his appeal a few times, but he thinks they’ll go for it after a round of ‘back-and-forth’ which he estimates will take a month or 2. He said he expects most of these genetic match drugs to “plateau” off after a while and loose their potency and that’s when you go with your plan B. 

I’m glad he has a plan B.

Please pray I can stand whatever side effects come with the increased dose, which starts tomorrow morning. I have also had a fracture in a vertebrae which has caused me tremendous pain in the past month. At least now we know what’s been causing it, but either way, I have to take it easier with lifting or any physical pressure because other “breaks” can happen just as easy even though the healed bones are stronger. There is still a systemic weakness in my bones wherever the cancer has eaten into previously.

After the meeting, I was a little down thinking, “How long will this go on? Is this my new norm, being sick pretty much all the time for years and years. Can I handle that? How hard will this be on my family?”

It’s easy to let thoughts come in that are discouraging… that focus on the hard parts without giving the high points any ground. 

I am making a point of focusing on and being thankful for the periods I do feel good and not get out ahead and too far into the future. And of course, you can’t forget about the God-Factor!

Thanks for your prayers and dedication to us during this difficult time. We are also moving tomorrow, so I hope to have the energy for that without doing too much.