Reality Check

I have had a love hate relationship with the Bachelor series even since it started.  Every year I swear I will not waste my life again and watch it – but I end up binge watching it on Hulu while doing bookwork.  When I arrived back at the hospital Monday, the one nurse was teasing him about watching the Bachelorette Finale this week.  It was like wait – what?  I’ve missed an entire season without even realizing it?  How did that happen?   I really am operating on fumes if I didn’t know this was going on.

Today marks the 30th day of life post-transplant.  Thankfully he has had no bone pain since that day and he is almost completely off the opioids.  This week his mouth has healed up but he still can’t stand the smell of hot food.  Most of his meals consist of cold cereal and yogurt.  He has almost no appetite and nothing sounds good.  They are basically forcing him to drink milk shakes twice a day for the calories.

Without a shirt on, his back looks more like a Halloween decoration skeleton than the strong strapping man I married.  He can hardly keep his pants up and he’s most comfortable hiding inside the warmth of a baggy hooded sweatshirt.  I will have my work cut out for me putting weight back on him while trying to take it off me.  Sister Kathy brought her yummy jam bars last Saturday and his idea of a splurge is eating half of one of them with his yogurt.  Guess it’s a start. 

Daughter Alli and husband Luke stopped by for a few minutes today.

No sooner had the mouth and nose healed up that he developed a terrible rash.  His markers for allergies are heightened; so it’s possible that he may have taken on some allergies of his donor.  Nurses told Nichole that they once had a patient that had a terrible reaction to a peanut butter sandwich and it was later determined that the donor was allergic to peanuts; so, it happens.  The rash is also a common symptom of graph versus host disease.  Like it sounds, it’s the side affect of the battle between the remaining cells vs the new cells.  A certain level is expected but serious cases will hinder the recovery process. Either way the treatment is the same and most definitely it doesn’t help the mental state of mind when your skin looks and feels terrible and the itch is unbearable.   

He can’t seem to sleep; or if he does, he still feels exhausted in the morning.  I think he’s catching a few winks in the early evenings but then the midnight meds and vitals wake him up.  Then there’s the blood draws at 3:30 a.m. and platelets at 5 a.m.  So that leaves him dozing off and on until noon.  He’s usually awake enough about the time the Gun Smoke marathon starts.  I think that runs for 3 hours or so.  Then it’s 3 hours of the Andy Griffith Show.  After that is Everyone Loves Raymond.  Once in a while he mixes in a football game or just shuts it off hoping to sleep a little before the next round of meds and vitals. 

Days are awkward.  He really doesn’t feel good enough for company; even mine.  I struggle to keep busy while being totally silent.  I don’t have the energy to go walking like I did when Nicole was here.  Misery loves company for sure.  It’s a very helpless situation.  Days go by that I don’t feel like I’ve done any good but it never fails that I leave for a day and things happen that I should have been there for.  I feel like every return visit to the hospital is like a first date.  Awkward, wearing my mask because I’ve been out in the world for a day or two.  Afraid that if I hug him too hard that he might break.  Not knowing what to say.  Just trying to get a smile out of him.   Wondering if things will even be the same again.  

Like Scott’s body, the road home is under re-construction.

Tonight, I spend another rare night in Vicksburg alone.  It should feel good to be home.  But it doesn’t.  This isn’t home – this is a house I am familiar with; one I know where things are kept.  My home includes a tall broad man with a smile in his eyes and strong hands.  It also includes a big lug of a dog with bad breath and stinky farts.  He’s dad’s couch buddy in the morning and mom’s cuddler at night.  I watch a couple stupid chick shows that he wouldn’t want to watch.  I turn on our favorite music.   I’m not tired; maybe that’s my body’s way of avoiding our bed.  It’s just another reminder that he’s not here.  I can’t lie; being here is hard.  We still have a long way to go and as hard as we try, no one can really help me anymore than I can help him.   It’s just going to take time and a whole lot of patience.   

One thought on “Reality Check

  1. Remember the up and downs that we knew was going to happen! I know more downs than we thought, but we knew it wouldn’t be easy! So far 30 days is nothing compared to all the time we are going to have with Scooter once this stage is over and he’s out of there, plus years of all of being together. Keep the end in the your sights. and your one tough women and he appreciates all your doing and loves you like crazy! He has told me so, many times! You know you can call anytime, and if ya need me to jump in a car and come and keep you company I will always be here for you!! Love you Sis!!

    Liked by 1 person

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