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Archive for September 21st, 2017

POD #0  was full of excitement and worry.  Finally getting things done.  We’d prayed, hoped, and wished that this is where we’d end up some day and we were finally here.  It had a surreal feeling, kind of like Christmas morning with a big dose of worry with all the excitement.  Lots of mental energy but not much else unless pacing in the waiting room and hallways counts as exercise.

Lots of family was here to see him out of surgery.

POD #1 brought a lot of relief.  Neil was doing great, but still sore and sleepy.  Lots of encouragement about getting up and walking.  Pointing out a few times how while getting up hurts it feels better after walking.  That night I stayed I stayed in the hospital and about 4 am Neil turned a corner.  Up and walking without all the assistance and walking around his room.

POD #2 Neil was a walking champion.  His goal was to walk 12 times and be up in the chair for 5 hours.  I don’t know how much he walked, but we were outside by the fountain 3 times, multiple full laps around the floor, down to the gift shop to look for a golfing magazine. {why don’t gift shops have many things for guys?  Jewelry, decorations, magazines, etc all geared toward women}  Mental stress and energy was down because at this point I’m convinced that Neil must be Superman.  We walked 7,000 steps.  A little low for a typical day for me, but crazy for someone who is recovering from surgery on his pancreas. It also felt like having a newborn baby after being frequently woke up during the night and I was physically tired.  I headed to the motor home to sleep at 6:30.  I slept amazing, but I think I’m behind on my sleeping bank still.

POD#3 Neil’s hematocrit is low, but not low enough to transfuse.  He is still having a lot of output from his JP that is bloody so he got a dose of Lysteda to help him clot.  It is still easy for him to move but his energy is in the toilet.  Partially from the hct, partially from being up ad restless all night again. (I slept very well in the RV)  Being in the hospital is hard.  Routines are all changed around, I’d be grateful for a to do list with housework things on it and we aren’t here because things are going well.  I know this is where we want to be and that it’s pretty miraculous that we are here since pancreatic cancer doesn’t really respond to chemotherapy, but I’m ready to be home.

Neil asked early on why I talk shop with people and I’ve decided because it’s familiar, it’s a known in a sea of unknown.  I’ve had friends from nursing school run into me, nurses who worked in Cedar just before I transferred up and I feel like I’ve made new friends but mostly it’s all unfamiliar and shop talk is a nice familiarity for me.  I want familiar.  I want to hear Ginger bark at nothing, Pria to bounce at the front door because she heard someone say out, to hear Charlet get all excited and “have to have” the t-shirt that says “Cleverly disguised as a responsible adult” because that could be her Halloween costume, smell McDonald’s on Michael after work and hear about Kaede’s schedule for the week.  I want mac and cheese for lunch, to be able to go for a ride and not have to worry about traffic, to hear the rain on the roof and look across the fence at Bud’s yard and pretend his garden is mine while wondering how many years until ours gets there.  To smell Neil’s late night snacking and debate about joining him.

Once again, the things I’ve prayed and hoped for are hard.  I’m grateful for this hard, and even more grateful we are approaching the end of it.  I continue to see that while miracles happen, they come with a lot of hard things attached in one way or another.  I’m tired of hard, but I’m grateful for this experience–the world is a complicated place.

IMC from the far parking lot

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