Next Level Extreme Fitness

How I am learning to "Do Better. Be Better." after the cavernoma malformation in the pons of my brainstem bled.

Wednesday, March 1, 2017

One Year Anniversary: The Next Eight Days

The details of the next eight days kind of all run together.  It was like we were living our own groundhog day.  We’d wake up, shower, take walks, go to the healing garden, eat lunch, take walks, go to the healing garden, eat supper, take walks, watch Netflix, call the girls, and go to sleep.  Sprinkle in some puking, OT and PT therapy sessions, lots of nurses and doctors visits, and medication administration and that was pretty much our days.

I woke up with impairments, but nothing like what I was expecting.  I never did get a headache, which shocked me.  My neck, though, WOW.  It was so stiff and sore. It ached much like your muscles do when you have been sick for a long time. I also had very limited range of motion, especially looking to my left side.  After sleeping for many hours, I would wake up and barely be able to move my head from side to side at all.  I was given lidocaine patches to wear to offer relief to the area.  I was supposed to have them put on at 9 am, but I quickly realized that I needed more relief throughout the night so I could sleep.  Instead, they were applied at 9 pm and I focused on stretching and staying active throughout the day to keep my neck loose.  My neck didn’t feel great, but it was no different than being sore after a really tough workout.  I was elated to have a stiff neck be my biggest ailment.      

My double vision was also back.  I never had a doubt that it wouldn’t be though.  Double vision was my most significant and permanent deficit from both of my strokes, so I knew it would be greatly affected by surgery.  Plus, my CM sat right on my sixth nerve which controls everything vision so it was only common sense to assume that poking around in there wouldn’t help my case.  My double vision was much like it was after my first stroke.  Whichever eye was covered would be the eye that would deviate in towards my nose.  The inability of my eye to track from left to right was also the same as it was after my first stroke.  Same ole deficits, different day.  

My balance was off, but it was only a little worse than what I went into surgery with.  Compared to my first stroke, this was a walk in the park to deal with.  I was able to walk with a walker right away.  I HATE walking with a walker.  It slows me down too much and makes my gait feel awkward.  It was my personal goal to be rid of the walker by the time I left Arizona.  Every chance I had, as long as I wasn’t too physically fatigued already, I would lose the walker and try to do balance activities or walk without it.  Within six days of having surgery, I freed myself of the walker.  My balance still wasn’t the best and I wasn’t going to go climb a mountain, but I had met my goal and I had done it much faster than I could have ever dreamed.

Many normal neuro functions were impacted as well for obvious reasons.  It was a struggle for me to sense my proximity to an object.  For example, it was difficult for me to determine how close I was standing next to a wall unless I was looking directly at it.  I would often reach to hold on to the walls chair rail as I practiced balance exercises only to miss.  Impaired depth perception heightened my lack of proximity sensation.  I always had one lens of my glasses covered with medical tape.  I would switch the blocked lens daily to make sure that both eyes had the opportunity to be the dominant eye.  But, that also meant that I was really only seeing out of one eye.  Add to that my eyes inability to move laterally and my necks diminished range of motion and I really didn’t see much of anything.  

All of these deficits combined together to make movement in general space very challenging.  I looked only straight ahead as I walked because I had limited range of motion in my neck.  If I wanted to turn and look at something, I needed to stop and turn my entire body in that direction.  Since my depth perception and spatial proximity were off, I had a difficult time determining how far or close to things I was, how much space I had to move in between objects, and how far I needed to step over or onto items.  All of this plus my balance issues and it was like I had been spun around in circles 50 times and then set free to give it a go.

Surprisingly, my fine motor function and grip strength was only slightly affected.  These were deficits that I thought I would for sure deal with on a large scale again.  I figured I would have to teach my left hand how to move again and possibly my right since it started to go after my second stroke.  Although my left hand was slow, it still worked.  My right hand wasn’t affected at all.  The amount of stiffness that I felt in my left hand and left foot was slightly higher, but nothing too much more crazy than what had become my new normal.

My face escaped surgery unscathed. I did not have facial tingling, numbness, or drooping.  I was shocked.  All of these were symptoms during both of my strokes.  In fact, they signified that something was really wrong the first time and that I was for sure having a stroke again the second time.  

What did I have?  Nausea.  Nausea.  And more nausea.  Some days I would puke numerous times a day.  Some days I would puke once.  Every time I threw up though, it meant another day at the hospital.  They would not let me go home until it had stopped.  This frustrated me to no end because if it wouldn’t have been for my nausea I would have been home much sooner.  I remember thinking at one point that I was never going to be able to go home.  

The doctors tried many medications while I was there.  One day I was given a steroid of some sort.  I didn’t puke all day, but I also didn’t sleep.  It was like I had take an entire bottle of amino energy--I was bouncing off of the walls. I felt great, but wow, the next day the ‘sugar high’ crashed and fatigue hit me like a ton of bricks.  Benadryl, believe it or not, was the medication that stopped my nausea.  I forget the science behind that medication choice, but let’s just say that Virginia, Dr. Spetzler’s right hand woman, is a genius.   

It’s not that I felt sick like how you do when you have the flu.  I would be completely fine and all of a sudden I would get nauseous, throw up, and then feel great again.  Other than wanting to be home so badly, being nauseous didn’t bother me.  I guess I could say that I had grown accustomed to it after dealing with the same sensation after both of my strokes.    My doctors told me that the trauma and the blood from my surgery had affected my nausea control center in my brain.  This wouldn’t be permanent, but until my brain healed a bit, this was going to be my new normal.        

The part I dreaded most about my day was the shot that I received in my stomach to prevent blood clotting right before bed.  I remember getting them after my first stroke as well.  I could not have them in my stomach then since I was pregnant so I would always choose to have them in my left thigh so I wouldn’t feel it as much.  I didn’t have a choice this time!  And since my stomach wasn’t desensitized at all, I could feel every second of it!  The needle on impact resembled the feel of a flu shot and the medicine that was injected instantly into my stomach felt like hot acid.  The pain would last for 22 seconds (yes, I counted each time).  The shots left my stomach to the immediate left and right of my belly button riddled with bruises.

I was constantly hungry (no surprise here for those who know me well).  But, EVERYTHING tasted awful. I realized very quickly that the surgery had affected my taste and smell.  Even my most favorite things to eat tasted awful…..and smelled even worse.  I basically lived on Rice Krispies, Lucky Charms, and Popsicles for twelve days.  My floor couldn’t keep our kitchen stocked, I went through the food so quickly.  

I could not control my body temperature either.  I was sweating to death and swore I had a fever or convinced hypothermia was setting in.  We would go out to the healing garden in the 75 degree beautiful weather and I would wear a sweatshirt, pants, and blanket and still be freezing.  

And then there was my incision.  They had only shaved a one inch wide by three inch long piece of my hair which I was elated about.  The incision spanned about 5” long and went much farther down my neck than I had anticipated.  There was a spot right below my hairline that they were worried wasn’t healing well and were putting ointment on.  After a few days Virginia suggested we stop putting ointment on it and it began to heal!  I can still feel that spot when I touch it now though.  It is not as smooth as the rest of my scar.  It was definitely intense to see my incision and rub my fingers across it.  It was quite the graphic visual reminder that I actually really did have this risky surgery, even though I felt wonderful.

The lack of physical impairments left me on cloud nine mentally and emotionally.  I could not believe that I was as healthy as I was (I still can’t a year later).  Honestly, I think all my nurses, doctors, and therapists were tickled pink as well.  My doctors would come for their morning rounds, compliment me on how much better I looked each day, evaluate my incision, and leave minutes later after adjusting my nausea medication as it was just trial and error at this point.  My nurses would come in to give me my medications and joke about how easy of a patient I was to take care of.  And my therapists were astounded by how quickly I was progressing from day to day. I thrived on ALL of that.  I loved being the easy patient.  I loved being able to show them all my improvements each day.  Their bewilderment gave me so much hope for how bright my future could be and it motivated me to push harder.    

And go, go, go I did.  We were always walking ‘the loop’ of our floor.  Many of the nurses were outside their patients rooms working on charts each time we stepped out.  They would always give me a,. “Looking good today!”  “Look at you go!”  “Do you ever rest?” as I walked by.  It was also evident that Patrick had made friends with all of them as they would call him by name.

When we weren’t walking the loop, we were at the healing garden.  We would go there to bask in the sun and people watch. :)  There was quite a few nights that we would sit on the bench until sunset.  It was the perfect place for us to spend our time and for me to practice walking.  The paths were curved and some were brick paved so it was like my own little obstacle course.

I also had one physical therapy and one occupational therapy session each day.  OT was usually in the morning and PT in the afternoon.  My physical therapy sessions included a lot of balancing exercises, stepping over and around items, and working on walking form.  This was all identical to what my therapy sessions were after my first stroke which was why Patrick and I were able to set up our own exercises over the weekend.  My occupational therapy sessions were all focused on my eyesight.  I practiced following objects in all different directions and testing the limit of my lateral eye movement.  Once again, this was all too familiar.

Most of all, I was enjoying the one on one time with Patrick.  We hadn’t spent that much time together in a LONG time.  It was re energizing to spend this time only focused on getting healthy and enjoying each others company.  I am so glad that he was able to get out and visit some of our friends and enjoy Phoenix a bit too.

I also experienced my first bout of survivor's guilt during these eight days.  I was usually the only patient at the  Healing Garden.  I was definitely the only person out on our floor.  Every time we would walk the loop I would try to peek out of the corner of my eye into the rooms we walked past.  I would often hear soft grumbles escape as I walked by and could always tell which patients needed the most care by the amount of nurses outside the door.  It was during these moments that I would wonder why I was spared--why I was okay--why I beat all the odds that were stacked against me?  I was not ready to handle thoughts like these.  I selfishly only wanted to celebrate my good fortune.  So I would say a prayer of gratitude in these moments and tuck those thoughts far, far away.

Every single second was of those eight days was worth it the day Dr. Spetzler came to check in with me.  We were told the day before that he would be stopping the next day to give me the all clear now that my nausea was controlled.  When we woke up the next morning we were informed to “stay close” to our room because they were unsure when Dr. Spetzler would be by.  Needless to say, it was a LONG day.  The only thing we did all day was sit in the room, watch Netflix, go to the Chapel on our floor, and walk the loop.  We would check in with our nurses like they were our parents.  We didn’t see the sun all day for fear that we would miss him.

FINALLY, at 5:30 p.m. Dr. Spetzler arrived with his entourage.  They were all dressed in full scrubs like they were in between or just finishing surgeries again.  I could tell instantly that it was going to be a quick visit by their demeanor.  I filled them in on how I was feeling and he commented on how remarkable my recovery was.  I closed the conversation by thanking him for giving me a miracle.  His response:

“You were a miracle before I even met you.”

I had only spoken to Dr. Spetzler for a whole five minutes during my time in Arizona yet he had managed to say two things to me during that I will cherish forever.

There was no doubt that surgery had affected me.  But I honestly could have cared less.  I was living a miracle.  A miracle I had hoped for but am not actually sure I believed would happen.  I knew that all of my deficits would either improve or disappear.  I was so incredibly grateful to be in the position I was in.  Plus, my therapists told me before we left that they didn’t feel I would need inpatient therapy since I had improved so quickly in a short amount of time.  That was unbelievable to me.  I thought I would be here for months and they were telling me I could go straight home.  What planet was I living on?  

I WAS BLISSFULLY HAPPY.

No comments:

Post a Comment