Hello world ...

Three years.  I'm not sure where the time has gone, but it has been just over three years since my surgery.

I was thinking about that as I was driving the car today.  With no proprioception on my right side, I drive with my left foot, and I had that brief, fleeting thought of  "I wonder what it would be like to drive with my real foot".   Yeah.  Common sense prevailed.  No way I'm going to test out whether or not my right foot responds properly to the gas pedal and the brake by hurtling 3 tonnes of killer metal down the street in an effort to "see what it's like".

So, what is it like?

It sucks.  To be honest, I would still trade my old body for my new one, and no amount of telling me "what could have been" will convince me otherwise.  I still miss my stilettos.  I still miss the ability to walk up an down stairs without a handrail.  I still miss not having to focus, all the time, on standing upright. I still miss when my legs didn't talk to me all the time with their incessant neuropathy and complaining.  I still miss the feeling of fit and fabulous that I no longer have.

Is my life normal?  To the outside world, yes. Absolutely.  If you didn't know to look for my disability, you wouldn't know it was there. Do I talk about it?  Almost never. You have to be around me when I can't do something or when my right leg gives out, for me to explain anything to you (which doesn't happen often). Have I adapted my life to my disability?  Absolutely .. your brain is very powerful, and if you are willing to believe you can do anything, it is amazing what you can do. Do I resent having to adapt?  Absolutely.

But, life is what it is, and the rest of my life has been very kind to me.  So I move on. 

This spring I did my first official 5K.  I did a 43:02.  The old me would have laughed out loud at anyone doing a 5K in 43 minutes.  The new me understands that everyone has a story ... that life isn't that simple. The first mile was awful .. mind blowingly, traumatizingly awful.  WTF am I doing, awful.  The second mile was about adapting, getting my head into the game.  The third mile turned into "(s)he is NOT going to finish ahead of me !!   My long buried competitive spirit kicked in.

But that didn't translate into long term change.  I have fought the wallowing, the anger, the resentment, the depression, the "why me", the urge to sleep all day.  Most days I win, some days I don't. 

I can't tell you it's going to be easy for you.  It's not.  I can't tell you you'll win .. I know several people who have let the repercussions of the tumour and the surgery win. All I can tell you is that I fight every day. Still.  If, after three years, I'm still fighting, I don't think the fight will ever end.  It was supposed to get easier, but it didn't.

I'm not lucky, but I'm not unlucky.  Mostly I'm stubborn and determined to "win".  Most days it sucks, but every day I'm glad to be alive.   Special thanks to my neurosurgeon for allowing that to happen.

ps - I'm taking that trip to Machu Picchu I had to miss because of surgery and I will climb those ruins!

Dammit.
:)

Mojo and Forgetting the Pain (But I Still Can't Dance)

523 days. To watch me walk now, you'd never know there is anything wrong.

I gave up the cane during the summer because it was getting in the way of my mojo.  I found that I was wanting to walk faster than I could move the cane, so the cane had to go.  It was a bit of a mental exercise to venture out into the world without it because I knew it was the only signal to the world at large that I have a disability, but I have survived.  I was right to be cautious.  People once again treat me like just any other commuter: GET THE HECK OUT OF MY WAY!  But that's life in a big city, and I'm keeping up just fine.

Stairs are still problematic.  When I'm feeling sassy-confident, I'll try the stairs "no hands", but for the most part I need to hold onto the handrail for both up and down.  And most importantly, I have to be looking at my feet.  I tried carrying a basket of laundry down the stairs the other day - that wasn't such a good plan. I didn't go ass over tea kettle or anything like that, but I couldn't see over the pile of laundry, so I didn't know when my foot was actually on the step.  Lack of touch sensation will do that to you.

The numbness, tingling and quasi-pain.  My 24/7 constant companion. My brain hasn't figured out yet that those signals are imposters, sending false reports that something is wacky and needs to be corrected.  Nothing is wacky ... just the nerve system itself.  I'd love an "off" switch for that, thank you very much.  But with a refusal to be medicated (does such medication even exist?), I'm stuck with the constant ringing of false alarms.   A cool side note ... if I rub my hand on my thigh, the ball of my foot tingles, but unfortunately not in a good way.  A second cool side note ... every now and then I forget about the pain.  Not for long periods of time, but I am starting to have moments when I can focus on something else and my brain blocks out the sensations.  I'm looking forward to having more and more of those moments.

I haven't run (my Sports Med axed that idea), I haven't found a good work/workout/domestic life/rest balance and the tingling drives me crazy, but I am chipping away at my list of things to regain.  I can run across the street if I have to (it's not pretty, but it works), I can balance on one foot, I can walk backwards and I'm not totally shattered by 8pm.

I can't dance yet, but maybe one day I will.

If this surgery has happened to you, please feel free to reach out to me any time at sarahependymoma@gmail.com.  There are so few of us out there, and we can learn so much from each other.

My Surgiversary

Yesterday was my 1st surgiversary.

I figure it's like marriage - the first year is the hardest, then after that you kinda get used to each other. You drive each other crazy sometimes, but overall, you'll keep what you have instead of the alternative.

We had a small celebration last night. Not sure that celebrating the anniversary of your surgery is something that normal people do, but we've already figured out that I aim for "not normal" as often as possible.  It was just the two of us with a quiet dinner, a really, really, really fabulous bottle of wine and a new episode of Big Bang Theory.

Today my new cane arrived. I decided that a black cane was inappropriate for summer and that I wanted something a little more seasonal.  If you have to use a cane ... make it a fabulous accessory!  The other thing I did today was buy a new pair of shoes.  Shoes with a heel.  Well, a 3cm heel that is very wide.  But it's a heel.  Something to wear with summer skirts.  They feel just a little more feminine than loafers and that maybe I'm getting my mojo back.

For the first time in a year I feel like I'm getting "me" back, and life is good again.  The time has gone by, and life's ebbs and flows have evolved to that point where it's time to say goodbye. Time to move on from the year that was May 2012 - May 2013,  to enjoy life and to focus on the future.

So, on this occasion of my surgiversary, I would like to thank those who have supported me, cheered me on, helped me out and given their time and effort to be involved in my recovery. I couldn't have done it without everyone's love and support.  If this surgery has happened to you, please feel free to reach out to me any time at intramedullary.ependymoma@gmail.com.  There are so few of us out there, and we can learn so much from each other.

I have reached the point in my recovery where there is nothing new to say. It's been a wild ride, but understanding that all good things come to an end, this is my final entry.

Until I wear a stiletto.

Stairs - the Penultimate Frontier

I have learned that climbing up and down stairs is one of the most mechanically sophisticated things our legs do in a day.  It requires strength, it requires balance, it requires the sense of touch, it requires confidence.  Most of us learned that when we were 1 to 2 years old.  Trial and error, the odd fall, the death grip on the railing.   Easy when you're 1 ... the ground isn't very far away.  Not so easy when you're 45.

I finally have most of my energy back. I own a treadmill, but walking on that at home is BORING, my bike is on the trainer, but riding that at home is BORING (and I won't ride it off the trainer - the risk of falling is too high), so I've been pretty good lately about getting into the gym.

Now me, being me ... maybe a little intense, maybe a little focused, maybe a wee bit Type A, looked around and said "what is the thing that challenges me the most".

Stairs

So, I got on the stair climber.  Not the stepper, the stair climber - the thing that is like a treadmill but with stairs.

The most terrifying 5 minutes of my life.

It didn't help my peace of mind that I wasn't wearing my glasses so I couldn't really see the controls, and that there is no safety stop magnet like there is on a treadmill. When the machine is moving, you can't feel the stair when you step on it, you don't know how much of your foot is actually on the step, and it's keep-up-or-fall-off ... life gets pretty interesting.

But I did it.  Sorry brain ... you really need to shut up.  I think the biggest challenge was overcoming the self-talk about "what if", calming the fear and just focusing on each step.

That was a couple of weeks ago.  Today I'm up to 15 minutes, and going fast enough to raise my heart rate and break a sweat.  It's not the 45 minutes I could do a year ago, but 51 weeks ago I couldn't walk.

One final frontier to go ....
Running.

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 :)