Brain 1, Legs 0

After I wrote the "well baby visit" post, I published it, then provided the link on Facebook to my limited number of family and friends. Posting the link to FB isn't something I regularly do, but I hadn't written a blog entry in a while so I figured I'd let people know.  I guess people actually do read my status updates (that there are no further comments or "likes" 99% of the time tells you how boring most of my life is, I guess)

From the "well baby visit" post, one comment in particular caught my attention ... "now you need to list the things you CAN do". Well.  There's something I need to think about.  I have fallen into the trap of comparing myself to T-1 presurgery, rather than T+1 post surgery.

In all honesty, I don't remember T+1 very well (or T+45 for that matter), so I spent the evening rereading all 101 entries that I'd written to date (my daughter thought I was waiting up late for her to come home ... ha!.)  Holy snicker-doodles ... I have forgotten so much!  I mean, I understand that people forget, have selective memories, and bad things fade away, .. but holy crap .. YOU FORGET.  I was reading some of the blog entries I wrote, wondering who had written them.  I remember the experience, but my memories of it now are so different.

In retrospect there has been so much I have gained.  So, to counter balance Thursday's doom and gloom of what I'll never get back,  today's thoughts are what I've lost, thought forever gone, but regained.

• I can walk.  It isn't the sassy swagger that I used to have, but to the casual on-looker, I'm reasonably normal

<insert long, thoughtful pause, lots of writing, editing and eventual deleting>

That's it.

I. Can. Walk.

Those three small words don't really do justice to what has been accomplished. To be able to walk again is so much more overwhelmingly powerful than all of the things I will never do again.

As a side note: It's finally feeling like spring - a nice warm(ish), sunny day, so I hauled my butt off the couch and decided I was going to walk my old 3 mile (5k) warm up loop. My legs were screaming all kinds of weird signals to my brain and they didn't want to go that far, so they are very much NOT IMPRESSED with me right now.  But my brain is very happy.  Brain 1, Legs 0.  I win.

He Ditched Me

Today was, as I describe it, my 11 month "well baby" check-up.  Those appointments that aren't medically necessary, but are a touch point for the doctor and patient to talk about how things are going.

Apparently, all things considered, I rock.

Now, to put that firmly in perspective, there are things that will always challenge me: 

• I cannot turn quickly - not totally necessary unless the elevators in your building are like the ones in mine ... 
• I cannot walk backwards - it's amazing how often we actually do take a step backwards in our day-to-day lives
• I cannot pivot my right foot - again, a useful trick for getting in and out of cars. Now I do the Paris Hilton (or Brittney witthout panties) thing ..  sit, then swivel my legs into the car. One could argue it's more lady-like : )
• Stairs.  Up or down. Take your pick.
• I fall off bar stools - and that's before I start drinking

and there are things that I will never do again:

• I will never feel temperature or sharp pain in my left leg and hip again
• I will never have proprioception or sensation of touch in my right leg and hip again
• I will never run again
• I will never jump again
• I will never wear stilettos again

My neurosurgeon figures that this is it.  I will continue to function in day-to-day life at about 90%. I will continue to adapt and improve in small ways, but those improvements will be due to training and not actual "healing".  The goal is to get on with life enough so that the numbness and tingling/pain become white noise - something that is always there but my brain forgets to register.

Given that a year ago I was looking paralysis in the face ... I'll take 90%.  There are exceptions to every rule, but I am unlikely to be one of them .. I do not have youth on my side.

So that was the first 10 minutes of my appointment.  The rest of the appointment was spent chit-chatting.  I learned that he ran marathons too, until an unfortunate medical incident ended that hobby; that he wants to think about retiring, but loves surgery; that he has patients who he remembers fondly and I'm one of them.  I thank him for his skill, expertise and excellent care of me. Back in an early post I indicated that the jury was out on my neurosurgeon.  The jury is in ... he is fabulous - both in skill and manner.

And then he ditched me.  We're done here. The MRI showed complete resection and I had the kind of tumour that doesn't come back.  So unless I have some issue down the road that concerns me, I need not see him again.

At least he did it in person :)

Birkenstocks. Finally.

Over the last week or so, I have been chipping away at finding a home in my new basement for my stuff (AKA things that I once deemed important but no longer are, or stuff that I'm convinced I/my child may someday use but likely won't.)  My endurance isn't what it used to be, so I couldn't just blitz it all in one day - it's been more of a "just tackle that corner" process.  In my determination today to just put away one more box of  basement stuff, I found my Birkenstocks (the ones from my cross border adventure last April).  Of course, they weren't in the Birkenstock shoe box that I diligently put with my other shoe boxes, it was in a random box of miscellaneous crap that had clearly been dumped into a storage tub in a last minute effort to get the basement cleared out.

They are pristine.  Never been worn.  Well ... aside from the one time in the hospital when I tried to wear them and I inadvertantly kicked one across the room when my leg went spazzy.  I haven't worn anything that just slips on to my feet since. I lost that ability over night.

In a moment of craziness I thought "I wonder if I can wear these" and I slipped them on.   LOL ... "I slipped them on" .. yeah, that's how it went.  Really I lodged the toe of the sandal against the wall to create the resistance required to wedge my foot in.  I don't "slip" anything on my feet any more - I don't have the fine muscle control to do it.  At any rate ... I got them on and expected to lose one or both of them in the first 35 seconds.

I walked around the room.  I walked to a different room. I continued with the task at hand of putting junk away. I look at the stairs ... now that would be a challenge!  I walked up the stairs, and they stayed on!

Who knew ... ten and a half months later I'd finally wear these sandals and celebrate walking up the stairs wearing them.  They are sending insane sensations to my brain that my brain doesn't know how to interpret.  I'm getting signals that my feet and calves feel tight, tingly, painful-ish, tense and overall weird, but I don't care.

I'm keeping them on, even if I am wearing sports socks with them :)

10 Months Post-Op. Should'a Had a Baby Instead

10 months yesterday.  I officially consider today to be 10 months because for the first 24 hours after my surgery I was pretty much stoned out of my mind on the after effects of the anesthetic and the high powered hits of morphine being shot in my direction.

So 10 months ... it's been quite a ride, and not one I would recommend.  If you've been diagnosed with this nasty tumour then it doesn't really matter what I recommend, but for the rest of the world ... try to avoid having someone mucking about in your spinal cord. It leaves a nasty after taste.

For those who are facing or have faced this and are looking for a frame of reference, where am I at?

Walking
I can walk.  I don't have the same sassy swagger that I used to have, and I would sell my soul to be able to wear stilettos again.  The loss of ability to wear stilettos is one of the few things that can bring me to tears. My significant other is okay with the lack of heels (I stand 6' or 6'1" in my favourites), as long as they come out to play.  My daughter, who has the same sized foot, is waiting for me to officially decree my high heeled days over so she can inherit my collection.  Apparently I'm the only one who wants me to wear them again ...

I am reduced to flat loafer-type shoes.  I refuse to go old lady Naturalizer (no offense to Naturalizer ... I'm sure you make lovely shoes), so I mortgaged my house to buy a couple of pairs of  kick-ass designer flats.  Not ballet flats - I still don't have the fine muscle control that is required to keep a ballet flat on my foot, but fun loafers.

Running
I can't run. Going on the theory that I won't ever run again.  It doesn't stop me from trying once in a while on a treadmill, but realistically, that part of my life is over.  It sucks.

Stairs
Stairs are coming along, but it is still where people (and me) notice my disability the most.  Stairs are where balance meets fine motor control and I don't have much of either ... handrails are my new best friend.  But I was proud of myself today ... I was able to carry a box of wine (not boxed wine ... a box with 12 bottles of wine) from the trunk of my car, up my 5 front steps and into the house.  They say success is driven by what motivates you :)

Numbness
I describe it as "numbness" but it is the same feeling as when your foot has been asleep, you start to move it, and the mad firey/painful-ish tingles start.  That's me.  From the hips down. 85% of the time.

Bodily Functions
For the most part, normal but I have "can't feel soft touch" issues. My SO asked me the other day why I don't wear sexy thong undies anymore.  Well ... with my soft touch sensory issues I can't tell whether what I'm feeling is the thong, or whether I've pooped my pants.  Very distracting.  (okay work colleagues ... how's THAT for too much information!)

I also have minor muscle control issues. Because of an unrelated issue (or as it turns out, non-issue) I had to have an ultrasound the other day. At the time of booking, I didn't really think it through, but when I was heading off to the appointment,  I realized that I would not be able to drink the required 1L of water.  Not because I couldn't drink it ... but because I am left with the inability to hold an over-full bladder.  Drinking a litre of water and not voluntarily peeing would result in involuntary peeing.  I chose to not drink the water.

I suppose it might have been worth the risk of embarassment, but the ultrasound was precautionary rather than important. Risk vs reward ... nope.   Maybe if I'd been having a baby I would have chosen to try to hold my pee for an hour.