Confusing Injection and a Long Walk

Dec 27th

Its like Mark just knows when I’m about to update you all…he sent me over another “devotional” to share with you today. You can skip right to it if you want. Or you can get an update first.

Christmas was good. Even though the kids are much older this was the first year they slept past 6:30am to open gifts. They were up late the night before. Its their tradition to “sleep over” together on Christmas Eve. This year they didn’t have the “second upstairs” but we do have an almost finished basement!

We slowly moved about and made coffee and waited for Karson and Abby to arrive. There was no rush and I can’t remember a Christmas like that except maybe our first Christmas because Karson may have been at his dad’s house. Abby show up in a her weird teal dragon jammies. I wasn’t sure if that made her more like us or if we should shut off the lights and pretend to not be home. Unwrapping gifts was slow and intentional. Despite the fact that for the second year in a row, a few of Cora’s gifts did not arrive, everyone was pleased and loved their gifts. It wasn’t over the top and if I can be thankful for the stress, I would say it allowed me to not think so much on what we bought and didn’t buy so I wasn’t constantly trying to even up because the night before I did go shopping and I started to do that. We all made breakfast and we all cleaned up and most of us napped as well. The afternoon/evening was spent at my brothers. We don’t exchange gifts with each other and this year we didn’t even do the exchange game so it was just gifts from the grands to the kids etc. Dinner lingered at the table while conversation stayed afloat for some time. We moved to the living room and while we hashed out ideas, the older girls set up the saran wrap game for the littles and I never had to concern myself. Mark held up well. His back hurts. Its a different hurt. Muscular and achey. He is still walking with a cane and needs to use a guardrail for stairs. He just isn’t strong enough to walk up without holding onto something.

We did attempt to go to Christmas Eve…did I tell you that? It was too hard to sit in the chairs at church for Mark so we ended up leaving. I wanted to go but wasn’t prepared to go..and felt gross and unkept and not mentally ready. I was okay with leaving. I was was weird to feel a bit like a stranger in the church we have attended for 20 years. I haven’t been there.

Sunday the kids went to church and we did dialysis so that we could JUST do UofM today and not have to do both.

We drove in last night when the roads were good! We stayed in a hotel again, but this time closer to the hospital. It was also within walking distance to a couple of resturants and so we did the 700ft walk to dinner. The main road was all lit up and it was very pretty but I don’t stop to take pictures. I take them with my mind more now. I’m more concerned with where Mark is walking and if he is feeling okay. Am I walking too fast…is he tired? Dinner was good and we ended up sleeping early but I woke up at midnight and you would have thought I was in the hood! So many loud noises outside and in the hotel, I had a hard time falling back to sleep and staying asleep.

Mark’s first appointment was at 7am for a CT scan of his abdomen and then off to labs. Both of those were quick but that hospital is big! Its a long walk down those halls. We did grab a wheelchair eventually. 9am was his Immunotherapy Infusion but about 15 mins before Mark gets a phone call from the nurse in Dr V’s office saying the insurance won’t pay for the “injection” and that he needs to come sign a waiver to take financial responsibily or he can’t have it. Mark got right on the phone with the insurance and it turns out UofM was calling the wrong number…they will pay for it and that he does still need to go sign the paper so we can move on and they will figure it out on their end. You might think that paying for an “injection” is no big deal but we had meds once for one of our kids that cost over $5000 a month and I know some of these copays on some of these meds are $10k. Copays!!! No, we are NOT paying that because their are programs and such but that’s alot for some little pills. So it was important to us to hear that its covered. But we were still confused. Infusion or injection?? Mark got his infusion and the the nurse came in and said she was able to ge the injection and give it to him there vs at his next 11am appointment. So it WAS an injection…it was a the FIRST time he was getting it and thats why it was so odd. It is a medication to help with his bone density. He is to have it every 4 weeks. Next was our oncology appointment and we waited 45 mins for that only to be told he was only getting the injection…and since he already got it…we had no reason to be there. So no nurse of doctor…just scans and labs and injections and infusions. We have a virtual on Monday with Dr V and I can see his labs etc on the portal probably tomorrow.

His fistula is frustrating and since they didn’t fix it at his last appointment, he needs to go to the original doctor…..who is on a mission trip for 6 weeks. So in order to have another doctor do it…he has to have a consult. Remember how I told you…they can look at pictures, scans etc…read notes…it doesn’t matter you have to have a consult first. That’s Jan 5th. After that he can schedule surgery to fix it and then hopefully we can begin our training. Until the they will continue to poke it in-center to help grow it but as far as using it full time and getting his port out…we have to wait a bit longer.

We got home and our basement doors were being installed. It’s the little things…like using the toilet WITH a door. 🙂 They look really cool. I was able to go on a 3 mile walk with a friend and still get home and type this up all before 9pm. I’m exhausted though. I did try to nap but my phone rang. Sigh.

Next up: MRI Wed and that virtual visit Monday. She should be able to tell us if she thinks the current treatment is working.

**********from Mark**********

12.27.21

Spiritual Seal 

Psalm 119: 32 I run in the path of your commands, for you have broadened my understanding..

I am moving forward one day at a time knowing that although the last 4 months have tested my faith, they have broadened my understanding.  

Back at U Of M for a day packed with appointments. 7 am starts with a CT scan.  I have had a bunch of scans the last 4 months.  Some MRI, CT, with dye, without, etc.  when they slide you in the tube a robo voice tells you to hold your breath.  It’s usually a pretty easy request—- “please hold your breath” machine spins up for about 6 seconds then, “take a breath.”     A few months ago I was at the Mayo Clinic in a MRI tube for about two and half hours,  (I think the operator was on a checkride).  They did a variety of scans and some of the breath holds felt like they lasted 30 seconds or more.  Now keep in mind I can hold my breath for more than 30 seconds, in my prime I could swim laps under water in the pool competing against my family and friends, (Undefeated at the ridge pool).  However,  there is something unnerving about holding your breath when you don’t know how long you are going to have to hold it.  Kind of like swimming for the surface and not arriving when you think you should because your cousin pulls you back under, (Jason)— panic begins to set in.  

My good friend Jason Long was explaining to me that Navy Seals go on runs that world class distance runners struggle with.  The Navy Seals will send their crew out on a run, where the start time is unexpected, the course is uncharted, the terrain is unfamiliar and finally, the distance is unknown.  If you know anything about distance runners, they’re fanatics about preparing— they eat and sleep exactly the same time before races and training runs, they carefully select apparel, based on distance, terrain and start times. They study the course, weather, competition and splits down to the second for long runs.  S consequently— they struggled with a Navy Seal training run—a Navy seal has disciplined his mind as much as his body to persevere through the unexpected, to keep forging on through the uncharted, 

Isaiah 40:31 “but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.”

I can physically handle a lot of pain,  I ran cross country in high school and college, and have always enjoyed pushing myself towards known painful goals. However, most of my life’s disciplines have had a clear finish line and expected good result.  If I pay ‘x’ amount more on my mortgage I will pay off my mortgage ’x’ months early.  If I run this training plan and intervals at this time I will be able to run a 5k at this time and take this place.  

I remember someone telling me once that they wished they lived during Jesus’ time— I replied “I’m glad I didn’t, I’m pretty sure I would have been a Pharisee!”  I desperately want a formula!  A time line, and known course.  God has been teaching me my whole life he cannot be manipulated— it’s easy to accept him as your savior, much more difficult to follow with courage through trials.  

He is not the God of fairy dust— he will ask you to raise your kids with the disciplines of scripture, worship and prayer; but you’re not guaranteed fairy dust will be spread on them, you may struggle with the pain of rebellion.  You may be a reliable, honest employee who is passed up for promotions and struggles financially due to unforeseen Illness, spousal abandonment etc etc.

Lately, I’ve spent too much time googling.  Life expectancy of Dialysis patients, renal carcinoma death rates, bone cancer recovery’s statistics, weird cancer treatments—etc. etc.  Dusty is always telling me to stop googling that stuff!

I spend a lot of wasted time  the last few months— staring at the wall, out windows at squirrels and blue jays, (I think I’m going to get a bird feeder outside my dialysis room.) Wondering what is the purpose of all this, what is my purpose in it, when will it end, how will it end?  How does God’s sovereignty fit into my circumstances? How do my prayers effect his sovereignty?  I’m tired of asking!  I’m tired of not knowing the course! I’m tired of not know when and how it will end!  But the truth is I never did know!  I’ve ignored my vulnerability my entire life!  I’ve become a good “distance runner”— just give me the distance, course weather etc.

God has asked me to go through Seal training— I’m struggling to become a Spiritual Seal.

Hebrews 12:7-11 

“Endure hardship as discipline; God is treating you as his children. For what children are not disciplined by their father? If you are not disciplined—and everyone undergoes discipline —then you are not legitimate, not true sons and daughters at all. Moreover, we have all had human fathers who disciplined us and we respected them for it. How much more should we submit to the Father of spirits and live! They disciplined us for a little while as they thought best; but God disciplines us for our good, in order that we may share in his holiness. No discipline seems pleasant at the time, but painful. Later on, however, it produces a harvest of righteousness and peace for those who have been trained by it.”

Lord please train me by it!  Open my kids eyes to it! Produce value in it!  Give me and my family a Harvest!  And if it’s your will Please Heal Me.

Your adopted son, brother, servant and friend—Mark