I’m Failing at Nursing.

DustyMark's Journey, Uncategorized

When I woke Mark up to give him his pain meds (1:30am) he said “I get to sleeping really good and wake up and then remember, I have cancer…and then I get really sad”.

It often does feel like a really crazy dream. I try to think on it really hard…to ask myself, “is this really happening”. Does he really have to have a machine clean his blood every day? Does he really have a large tumor in his kidney? There’s a part of me that is in crisis mode but then I have to tell myself, this is not part time. It’s not just going away. And that makes ME really sad too.


I made two major mistakes so far. I have been giving Mark more blood thinner than he needs. I forgot to change the dosage. But it’s not like someone is guiding you through this right? That’s why I ran out so fast and couldn’t understand why the insurance wasn’t paying for a refill yet. I felt like an idiot when I got back home and realized what I did. Today I was doing his catheter care at the end of dialysis and when you have that main vein/artery open to the air..you HAVE to wear a mask so no bacteria gets in there. Mark had his on but I forgot and didn’t even realize until I closed up the last one and bandaged it up. I’m failing as a nurse.

A typical day for us right now looks like this:

I wake up by 6:30 which is about 30 mins or more too late. If I can dress and get ready quickly then I have time to fill my water bottle and start the teapot. I wake Mark by 6:45am and he cleans up and I help him get dressed. (his wardrobe is limited these days so it doesn’t take long). He can do it himself but since we wakeup too late, it takes too long. Tea, morning meds and I make sure my dialysis bag is packed. If I have juice ready I grab it (or shakeology) for Mark to drink after tea on the way in. Dialysis lasts 3 hours but it takes us about an hour to set up. After he does his last set of vitals and “weighs out” he always goes out to the parking lot and walks down the sidewalk. Sitting that long hurts. I take my time getting back into the car and drive and pick him up. These days we have several other appointments so we don’t usually get to go back home right away. Today we got home at 4 after gas and med pick up (from my snafu) and the cross country team was already in our driveway.

It was our night to host for the team dinner and although that sounds nuts to everyone reading this, it was important to Aly and important to us. The Seniors get to host, and she is finally a senior. I didn’t have to do any work for it, in fact a house cleaning fairy wandered in today and thank the Lord for that because I thought I would have an hour when I got home and I did NOT!

After dinner most of the team squished into the living room and watched Mulan. Now the remainder are watching the sunset.

We did FINALLY get some feedback from Dr Campbells office and scheduled a meeting next week although we are hoping UofM is going to offer us what we need. Keeping all options open. I have a health coach meeting with a functional medicine office and hope they can help guide me specifically for Mark. That’s not til next week.

Our delivery for home dialysis comes soon.

I never remember all the things but I hope I’m remembering the most important. We kind of strategized to make sure he has something little to eat/drink every hour because he craves food and really is hungry and wants to eat….but just really can’t. When he has something that tastes good he will often overdo it…So we think if he can eat a little throughout the first 3/4 of the day and stop at night then his gut won’t bother him in the evening. It really is weird game you have to play. He is down to his original weight (over 30 pounds of water weight taken off) but he still has water at his ankles and a bit on his thighs and of course the middle so that means he is way below his normal weight (once that water comes off) He has little energy.

I couldn’t sleep last night so I was up 2am-4:30am. I did my nails and listened to Psalms on a podcast but then saw a friend sent me a youtube video of verses with background music to go to sleep to so I put my airpods in and layed down to that. No wonder its so hard to get up! And if you see me and think “how does she have time for a manicure?” I did it in the middle of the night to myself. Its not my best effort at self care.

This one stuck out to me last night

Psalm 119:153-154

Also here is the Meal Train. Some have been asking