Friday, March 14, 2014

First Arnieversary of Arnie's Apocalypse..

I had plenty of hopes to get things in order
and
have a post ready for yesterday.
It did not happen.

I want to sit down and update the blog
but don't know when to choose the time.

I don't want to do it with the kiddos running around
(and yet here I am this morning doing it)
or
once they are in bed,
I like to see Andrew
and
by the end of the day
I want to rest my brain.

I never gave the January update
from seeing my Neuro-Oncologist.
But as the saying goes,
“No news is good news!”

Things are clear, well that is how we say it,
the oncologoist and reports say, "stable"
as in Arnie's roots are not growing, 
my “hole” is getting more and more
clear meaning, it
has healed well
and
as she says, “They rest of my brain
is beautiful brain.”

I had some concerns regarding
regressions towards how I was post surgery.
I was becoming exhausted,
not able to to focus
and
especially at the new house,
clip walls, doors, cabinets,
drop things and the list goes on..

What she said makes sense,
I did heal well at our other home,
I had it all nice and organized
and
I knew the home.

She states, brain surgery is comparable to
a traumatic brain injury.
It takes a lot time to adjust to change.
So just by changing our home
I regressed.
I have a huge mess to organize
and
I am always the plan maker
of what needs to be done.
Then the effort to do it takes all of my
energy,
that does not include my typical
Mom duties.
I am back to not being able to pack
Aidan's lunch.

It makes sense, the comparison traumatic brain
injury however, I never thought of it
like that since there were supremely skilled
hands in my brain
and
was told many times by my neuro-oncologist
that it was the best resection she has ever seen!

But of course, skilled hands or not
a brain is not made to have someones hands in it.
:)

It was a good perspective and
helped me to reduce my frustration with it all
a little bit.

She let me decide if I want to come back in 5 months!
That does worry me a little but
it would be nice to spread it out a bit
and
 if I am not comfortable they
will see me sooner.
Just like Dr. Grossi did in 2012
and
when I trusted my gut, that I needed to get in,
I did, he did the MRI and it lead to the biopsy.

So, I am working on it.
Trusting the gut.

Since then I have had some
 bouts of organization
and 
rest.

I have gotten a few things revamped at home
the Boys are doing better with out the extra chaos of
disorganization
and
so am I.

I have had a few down days this week.
I am trying.

I have much more patience when I don't
feel like I have been hit by a truck,
joints aching, shooting pains in my legs and arms,
dizziness and nausea from that nasty spinning feeling.

Which we have had our NC weather going wacky
and I can feel the change.
Heck, even on good days with calm weather, 
 just going down a hill
will cause pressure in my ears to change
and
on bad days my head.
It happens to a lot of people...

So, yesterday was 365 days since the resection.

It does seem like forever ago.
I am not complaining.

I forget about it a lot,
then I hit the scar on my head,
or get the tingling through my scalp
and face,
or that spinning feeling,
or a
lack of strength
or dropping something

I had a bad week the other month.
My peripheral judgement was off,
I got a coffee mug out of the microwave
from reheating it but taking it out
I misjudged the opening of the microwave, slammed
the mug (a gift from our Boys) into the inside edge of the opening
and 
lost my grip 
and 
it
slammed to the floor.
This was after baking 
and 
not being able to judge the
flour scoop to the bowl,
and 
then had a whisk
that kept springing a part.

It was annoying but I carried on..I did get a bit
perturbed with the coffee mug.
But, we must carry on..
this are minor things
but a lot of times are just a tiny mirror
of how Life goes at times.
Annoyances..
Head up and keep on truckin'.

I spent some time yesterday
trying to remember what I could from March 13, 2013.

I have pictures that we took and I know I cracked goofy (or lame)
jokes 
and
 as the pre-op meds kicked in I got goofier.

Taking photos of all of us in the room.
I had the awesome nurses laughing with us.

I don't totally remember saying good bye
but as yesterday went on I remember the man I met
when he was doing further prep..
and 
we talked about kids.
I remember he had a heavy accent 
and
 he talking about placing my
arterial pressure device in my wrist
and
then I next think I remember opening my eye barely in ICU
I remember a blurry male nurse
and
 the window next to the door.
Then I remember being moved onto the neuro floor.

I met the nurse that I had for my biopsy, 
smiled talked to her 
and 
she introduced me to the new nurse taking over.

I remember my post op MRI sort of. 
 Andrew walked beside my bed as they rolled me
to the MRI techs who did 95% of my MRI's before that.
I think I remember him laughing with me
and 
 then they shut down the neuro floor for maintenance
and 
I was moved to another floor.

I met a PT on the neuro floor 
and 
got to practice walking with her
and 
was told to practice.
I remember a few practice walks..
and
that certain hallways smelled odd.

I remember my best friend coming with a burger 
and 
shake for Andrew,
I saw our Aidan, my brother, sister, my Grandma and one of my Uncles(possibly him more than once?).
My Parents were there especially in the day time
and
 one super sunny day where I felt horrible
and 
my neuro-surgeon's PA was there..
I saw my Dad sitting next to me 
and
 I went back to asleep.

What I remember most is the day I got to go home,
Dr. Grossi saw me, told me to go get a shower! 
I could wash my hair,
my face, brush my teeth
but that energy to get clean was a lot.
Andrew had to help me
(not what you think would happen to a 31 and 30 year old,
many people are much older if they have to do this
and we get told we are so young..but it sure doesn't seem like it
at times)
I also couldn't feel part of my face or my head
so since you can't see it
you need help.
I got to get dressed.

Then I said I wanted real food. (Andrew blogged about that)
Then the kind staff made sure before I got in the car
I got an IV dose of zofran so I could make the ride home
without hurling.
I walked in our front door climbed our steep stairs and went straight to bed.
That is the short winded (for me) of my 4 days post op.
What a wild and crazy year..
Top Left, pre op, mid left 24 hours post op (?)
Bottom left  and entire right 365 days post op.

Duke is A-MAZ-ING!!
So glad to be here with my Husband and Boys.
Don't forget, 




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