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,
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 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 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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