My Unexpected Adventure with a Brain Tumor–Part 10 (Heading Home)

Surgery was on Monday, and the days that followed were pretty restful.  By Thursday I was wearing my own comfy jammies and settling in to my familiar hospital bed even deeper, feeling like I knew the drill, but then the rehab pace started really picking up.  Physical and occupational therapists came around frequently with lots of motivation to get me up and about, and trying new things, like navigating stairs with my walker.  My husband and I both felt like my balance was super sketchy in my one and only attempt, but they seemed to be content enough with it to make it be my final test.  Another therapist suggested that I try eating crackers, but I knew I couldn’t pull that off.  (I am also gluten-free, and I don’t think they had GF crunchy snacks lying around to test out.)   I was, however, able to eat teeny-tiny shreds of chicken if I had something to wash it down with, so they seemed pleased with that.

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My new battle scar!  (It reminds me of baseball stitching.)

After having to recite the alphabet backwards and get a recommendation for a shower chair, we were getting the impression that they were wanting to send me home.  When the doctors on duty came in to confirm that I was getting discharged that afternoon, we were a little in shock.   I wasn’t quite ready to leave the safe confines of the hospital, and I don’t think my family was quite ready to have my extremely weak, unstable self entirely in their care.  We asked about staying one more day, and they said that since I’ve “passed all the tests” and it wouldn’t be medically necessary to stay another day, that my insurance may not cover it.  So… we signed the discharge papers, gathered up my stuff, and they wheeled me out.

I was told to not tape my during the day, but to definitely tape it at night.  So, having it exposed while out in the world proved to be bugging me a lot, and the hour-long drive home was a bit rough in the bright sun and with bumpy roads.  After we arrived home and all managed to get me and my walker up all the steps to our front door, my husband and mom made me a propped-up bed on the couch, cleared away the rug and coffee table for uninhibited walker-traveling, and there I stayed.

Our meal train had already started a few days prior, and friends were delivering dinners.  I wasn’t so sure that I wanted to socialize with people coming by, but our couch is pretty front-and-center in our home, and my downstairs bed wasn’t ideal to hang out in, so it was inevitable that I’d be visiting a bit with the friends coming by.   As the days passed, I got more comfortable with the idea of people seeing me in such a vulnerable state, and maintaining that friendship connection was giving me an emotional boost.  Most people were expecting me to look much worse and were pretty happy to see me getting around with my walker.  Having meals delivered was extremely helpful.  They were hearty and delicious, and I know that my husband really appreciated not having to think about what to cook every night.

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My true colors were shining through!

I did not start taking notes or journaling my progress at that point, but I would recommend to others that they do record as many details as they can, to track progress.  What I remember is that I felt totally “worked over”  and “out of sorts” in general, and like I was in an unfamiliar body, kind of like after giving birth.  Fortunately, I still had no pain, nausea or dizziness.  Most of my misery surrounded my very annoyed eye.  I felt weak, but I wasn’t fatigued enough to really need a nap.  I couldn’t read or watch TV with my vision issues, and I avoided looking in the mirror because when I caught a glimpse, my face looked totally swollen, misshapen and bizarre to me.  (Thinking about that was not benefiting me in any way. )   I mainly just remained upright to prevent the dreaded cerebral-spinal fluid leak I was warned could happen, and continued to sit on the couch in my foreign body, under my blankets, and watch the rainbow bruises appear on my arms where the IVs had been.  If only I had felt as magical as a unicorn…

 

 

 

 

 

 

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