September 28th
Oops. It has been a few days since I updated. There hasn’t been a ton of new information or news to spread..so I waited.
Today was weird. Well, not weird, just kind of somber. I put some phone calls and mycharts messages in to the UofM offices in hopes of hearing something back regarding meds or appointments. I open my computer every morning hoping to see something new and there just isn’t anything. I started to fear we were about to run the same race we ran a month ago.
Mark has been trying to eat but everything is a catch 22 and so eating causes pain but not eating causes rapid weight loss, weakness and fatigue. I was looking at photos today and even though neither Mark nor I would consider Mark “beefy” I feel like he had a muscular athletic build. I cannot believe how fast it can all go away. In two months its like he has lost all muscle. He says “Dust, its like there is no calf at all.” I don’t know if the fat reserves and muscles are going toward healing or if the cancer is sucking it all out of him. Either way, it is gone. His lower back is still in excruciating pain at times and burping or hiccuping can cause him extreme pain. Sleeping is still better, not awesome but better. We are waiting on 2 meds. One to block the opiods (I don’t think I spelled that right) from entering the gut system (in hopes the gut will “wake up” and start doing its job), and the other is a slow release pain med so he doesn’t have to wake up to retake meds in order to try to fall back to sleep.
We do colon hydrotherapy about once a week to at least get SOME elimination because his body is not doing it on its own. He has a scope scheduled next week but I’m hoping we won’t need it.
I just wanted to get on tonight to quickly update you and I’m already rambling.
It feels like every day we are now doing the same thing with no results. Dialysis doesn’t make him feel better and he often sleeps through it and then again for a few hours when he gets home. They are changing his script again. I do want to say, even though we don’t like going to dialysis…the people there are awesome.
So…after we got home…I had to meet some builders up at the Newaygo house (jack and rubys) but when I got home..Mark had started Hoosiers…if you know Mark….you know. Anyways…I got a voicemail from UofM and he is scheduled for Monday the 4th!!! We will be there all afternoon for labs, doctor follow up and nurse meeting and then INFUSION!!!! PTL (praise the Lord-in case you were unfamiliar)
I just wanted you guys to know that.
My prayer warriors. Pray for this but pray for Ray Dryer, the family of Dave Harrison and Amy Martens and her family. Also my friend Jamie B with the loss of her sister. Its been a hard couple of months it seems…for many families. There’s more I can add I’m sure.
We decied to swallow our pride and let some of my good friends put together a Go Fund Me account. I’ve always had like a slight negative conotation with these things….but…I have been asked almost daily for over a month now, from various people. “how can I help?” I don’t know what to tell them and many are far away so this is our solution. We have a long road ahead of us and everything helps. Its all been very humbling.
Here is the link:
Here is the link for the meal train:
