The 10 week mark (Originally titled The 8 week mark)

I started this post two weeks ago, but never got around to publishing it.  I’m now at the 10 week post-op mark, so I’ve had to make a few tweaks to my original post. (Not that you’d know that without me saying anything about it.)

8 weeks post-op today. 10 weeks post-op.

To be completely honest, I thought (hoped) my head would be pretty close to feeling “normal” by now.  Maybe it was wishful thinking, I’m not sure.  It’s not that I’m disappointed with my progress – far from it.  I’m just tired of having to rely on others to get me from place to place, tired of feeling sensory overload when I leave my house, and tired of being tired so early in the evening.  The not driving thing is driving me nuts – pun intended.  It’s one thing to be at home for days, without leaving, by choice.  It’s an entirely different feeling to be at home and know you can’t leave safely by yourself, driving a vehicle.  (10 week note – I have ventured out behind the wheel, (sticking to short distances close to home,) but don’t feel ready to tackle the high traffic freeways quite yet.  I’ll leave those to Jake.)

I realize there are several side effects that I’m extremely grateful I have not had to face: a CSF leak that could have meant a lumbar drain and/or second surgery, facial paralysis, my eye lid not closing on its own and needing a weight and/or lubricant to keep the eye from drying out, or swallowing difficulties.  Those side effects are ones that many people on the AN Facebook page I am part of have to deal with.  My daily frustrations involve balance and minor dizziness issues and the fact that my taste buds don’t work like they should.  It’s unknown how long my balance issues will persist and my sense of taste may or may not return.  For someone who really likes flavorful food, it is disappointing to take a bite of something and not have it taste like you know it should.  (10 week note – I had a near fall over the weekend.  I closed my eyes for a moment, turned my head suddenly and totally lost my balance.  It was quite scary and I am grateful Jake was in the right place at the right time to catch me.)

Letting myself feel the feelings of frustration and impatience and then choosing to change my perspective to focus on the positive, here’s what I CAN and have been able to do.  Three of my PT goals are being able to play volleyball, ride a bike and paddle board again.   My physical therapist has had a PT student working with her the last several weeks and they have come up with challenging ways to work on my balance in order to get me back to doing those activities.  Two weeks ago the PT student and I were able to do a little volleyball passing and setting in the hospital auditorium.  I was pleasantly surprised at how muscle memory kicked in and I was able to track the ball without thinking.  My head did get somewhat dizzy, but I didn’t fall over and was able to recover pretty well between passes.  We’ve also worked on my goal of riding a two-wheeled bike by setting up situations where I pedal in an unsteady environment and also on a stationary bike. Shecklet #4 is really excited to ride her tag-a-long bike and I want to ride alongside her – she’s the driving force behind getting to my goal.  Paddle boarding is difficult to simulate, but yesterday I did balance practice on a Bosu balance trainer and a balance rocker.  It felt good to push myself.

It has become very apparent to me that I need to get out more.  My brain is fairly comfortable within the confines of our house – no major issues with feeling dizzy or overwhelmed.  Stepping outside or into a store is a different story.  The lights, colors, sounds – they are all quite overwhelming.  And while I manage as best I can, I’m pretty tired afterwards.  A week ago, we spent time watching a basketball event at the kids’ school one day and I did some office work the next day.  It took me several days to recover from those two outings – I needed longer naps and longer nights’ sleeps.  When I mentioned my extreme fatigue to my PT, she told me about how I need cognitive rest during my recovery.  My brain is exhausted after too much stimulation – sound and visual, and I need to make sure I “find a balance between resting, doing light activities and sleeping.” As a fellow AN warrior pointed out, it’s a “magic balance.” I’ve yet to find it, but I’m trying.

The emotion of what I went through two months 10 weeks ago still hits me from time to time.  It almost doesn’t seem real.  But then I feel the scar that makes a “C” around my right ear and the see one on my belly where they took fat to plug the hole where the tumor was and I realize just how real it is.  I give thanks to God that I am alive.