Moving Home and Moving Homes

DustyMark's Journey

September 5th…HA!!! Its October. October 5th

Yesterday was good and rough at the same time. We knew it would be a long day so I spent time the night before packing up the car to be prepared. I even made a bed in the back so Mark could lie down if there was more comfortable for him on the travel to UofM. I packed snacks and water, my dialysis bag, computer bag and meds. I packed our gift cards in my wallet and felt pretty prepared.

We got up at 5am (well I did anyways) and tried to get us rolling and on the road by 6:15 to get to dialysis. Most of it was set up when we got there so we just needed to do CVC care and get him hooked up. I can do it, and I have been doing it but it still makes me nervous. As soon as we were done with dialysis we headed to a meijer pharmacy to grab a refill. That whole thing was slightly messy (as most of this is) but I was able reroute the script to the right pharmacy and get it picked up. We grabbed some lunch for the road, threw my sunglasses on and headed toward Ann Arbor.

The facility wasn’t anything crazy nice like Mayo or even Spectrum and you might even say it felt dirty…but getting to where we needed to go and getting the directions we needed went well. It flowed well. By the time he got there though he just did NOT want to sit. So he paced the halls while he waited for each appointment. The back pain is real!! Labs first. Super quick. Then we had to wait for the doctor but that happened quickly too. We still like her. She is ready to do this and is no nonsense. She still seemed hopeful but was a bit shocked her script for the “chemo”pill and the pain med still was not in our possession. I did just talk to U of M before heading up to the appointment about one of those so I’m hopeful we will start those sooon! (like this week). We met with a nurse to go over all the side affects and risks and it was kind of funny. Every time she listed a side affect, Mark and I looked at each other…”um, we already have that one”. So none of it really seems scarey. After that we headed to the infusion check in and then Mark just paced until it was his turn. One of the nurses tried to get him a chair sooner as she noticed how much pain he was in. He was given a pain med for the infusion.

The Immunotherapy Infusion does not take long and is intravenous. Hooked up, infused and done in less than an hour. We will do this every 6 weeks.

No, he doesn’t feel better yet. No, he doesn’t notice any change. It will take a while but it won’t take forever. She said she will know after a few infusions, if Mark is “gaining” from the treatment. It works best with the “chemo” pill we don’t have yet so let’s hope that gets here soon.

Mark took advantage of the bed in the back halfway home but we had to stop off Cascade to get out and walk along the expressway exit. It’s just too much sitting. When we got home (to a very clean house from showing) we got him on some ice packs and then later a heat pad and did a castor oil pack for his belly.

Today we picked up a new med for him. This is suppose to block the pain meds from his digestive track in hopes that he can get his GI moving correctly again and still benefit from the pain meds. He took his first dose today. We are hopeful this might help and so we canceled his GI appointment because all they wanted him to do his drink the prep kit and do a colonoscopy and my view on it is: if nothing (no laxative in the last 1.5 months) is going through…why would that? And if it doesn’t go through…it will add temendous pain and probably vomitting. So that is where we are at.

They changed his dialysis script and so he has to get more dialisate which takes longer but that is better than adding another day. All of our equipment is at home and so today I will prime a Pak for the pureflow at home and tomorrow I will make a Sak (which has to be tested so it is wasted) and then he will get dialysis at home on Thursday. If all goes well we will be on our own on Friday.

I’m nervous. Mark is so chill about alarms going off on the machine but it pumps major adrenaline in me and makes me want to cry because I’m afraid I wont know what to do. I know it will get easier as I go but I hate having the pressure of making big medical decisions on the fly (they are big to me).

In other news: our Kent City house is pending. We took a bit of a risk on a buyer and are moving forward on that. Our Newaygo house is moving along but it all seems fine until its time to move in and A, B, and C never got done. So we will keep rolling on that. Some days surprising things get done! The kids have a meet tonight! Cora comes home not this weekend but the next for a longer stay (they have a fall break) and its homecoming so that should be fun.

Thats it. I’m frazzled from too many alarms on the machine. Hopefully he will get his fistula soon and then after 6-8 weeks he can use that.