2014 Angels Among Us

It is tomorrow!

A year has passed. 

I was getting everyone's 

safety pins, numbers and t-shirts 

organized. 

As I did this, my fingers were shaking. 

There is a battle of nerves for sure. 

One is that I am not being as active

as I like to be. 

I have hit a slump of feeling

like I have been run over by a truck

no amount of sleep can fix. 

I was hoping to be in prime running 

and exercise shape

but was letting the dragging

feeling consume the best of me. 

On top of just the experience. 

Last years was so surreal. 

(Like I said  I wanted to post about it

and now it's a year later..)

It was a morning of shaking, 

tears in my eyes

and

my chest burning like wild fire. 

This year my goal is to run

but 

to not go into my habit

of going out hard.

I am going to do it to

just finish it, 

no walking

and 

the hopes of being able to

do my crazy Carrie finish kick in. 

(I have some good muscle memory for the final sprint in.)

Last year it was hard. 

There are so many kinds of brain tumors out there.

Some have it "harder" than others. 

None of it is easy. 

We were supremely blessed to catch mine

slow growing. 

So while there last year I did feel guilty

I see others in wheel chairs, 

those wearing shirts of who has gone to Heaven. 

Here I was 5-6 weeks post-op

standing on my two feet, 

no chemo or radiation, 

just a precautionary anit-seizure medication.

I would have been on more at that point

but after my body going nutty from it

I was quickly taken off of it, 

not even weaned like you usually are. 

But, everyone's path is different

and 

no path is easy. 

But I had a hard time with that

idea. 

I wished that others did not have to 

go the path they have. 

Perhaps, soon they will understand more. 

Perhaps, there will be a more early detection

system created. 

I was lucky we caught mine, 

when everyone said

I showed no signs of it.

I ONLY went to the doctor 

due to a massive change in my 

migraine pattern

and

having days of sleeping 

and

sleeping

and 

still being exhausted. 

Even though it was wrapping around 

an optic nerve, 

I had no apparent vision issues

and 

even my Eye Doctor could not see it. 

The neurologist I was sent to 

told me my migraines were unrelated

to it. 

My Neurosurgeon was dead set that it 

was a glioma. 

But he agreed to wait and watch. 

Let me pass up a biopsy

because the professionals

 who collaborated were

feeling it was an 

(can't think of the term)

pretty much just an deformity that 

was from me developing as a fetus. 

Yeah..I can get that description out

but for the life of me can't remember

what he called it. 

But he so kindly told me

 I could come back sooner

and
I did. 

And HE was RIGHT..

The funny thing is..

after biopsy 

and craniotomy 

the post-surgical pain in my head

was exactly the location

and 

same feelings 

just even more painful

than my 

migraines

that were "not a cause of it."

So, I have HOPE that

more understanding of Brain Tumors

especially these STUPID gliomas. 

Will come soon. 

One way to help is donating to Angels Among Us, 

100% of all donations go straight to 

Brain Tumor Research

and 

from my understanding

it is towards these gliomas

because they are the ones that 

cause that HORRIBLE C-word. 

My Hope is an understanding

of being able to possible find them

before they hit the Stage 3 and 4's. 

I have not been there. 

Arnie was/is a stage 2

but has the most high probability 

to become a 3 or 4. 

So, as to why I go for check ups

for them to monitor his 

left over roots.

So if any change is notated 

he gets blown away 

quickly

with some powerful stuff. 

Thankfully, that has not happened.

I feel this is due to the WONDERFUL staff at Duke. 

Another goal for tomorrow is to 

be brave 

and 

when I see my Neuro-Oncologist

to introduce her to our Boys. 

And then I will see here 19 days from tomorrow. 

So if you can, please help donate. 

Arnie's Apocalypse is 

$590 from the team goal. j

Can we meet our goal?

Shirts are in!!!

Just in our hands about 15 minutes ago..

Ready for the 2014 Angels Among Us..

Are you?!

Thursday's forgetfulness and Ella's Race tomorrow

I am having a hard time.

I am exhausted no matter how much I sleep

or

how active I try to be.

I am also having a hard time focusing

and

haven't shaken yesterday yet.

I guess just as the children I am a creature of routine

and habit.

I got to read to D's class.

So I parked in different spot of his preschool.

Once the reading was done,

school was over.

I took D and Logan and we went to where I parked.

I got the Boys in the car and drove home.

I pulled into our drive, put the van in park,

turned off the van

and

our Logan was standing behind me!

Apparently, I never strapped him in and he did not

complain.

I feel like a horrible failure.

I have before wondered if I did not strap them in

due to habit and ritual

and

will look in my mirror for a visual.

This did not happen.

Thankfully he was not hurt

however, I am hurt with myself.

I am not happy about it

and can't shake it.

I then later on unbuckled him after

getting him from school and forgot I did that (the unbuckling).

Then I panicked if I forgot again (to buckle him)

but when I retraced my steps I am 99% sure

I did unbuckle him.

Earlier this week I was so happy I made a big dinner.

I got everything finished together

at the same time.

Nothing was burnt and

was served warm (not hot or cold)

I feel like I just finally broke in the

kitchen at this house.

I also cleaned up.

So a complete meal start to finish.

One that required chopping stuff, while cooking

and baking multiple things.

I feel like I passed a dip in the roller coaster of life.

But then I forgot to buckle Bitty..

Then last night I reheated something on our

“low output” burner,

we have a gas stove.

At bedtime I I thought I smelled

gas in our upstairs hall way

but,
 blamed it on just having the stove top

on earlier.

I did not say anything
and
 convinced

myself not to check it.

I fell asleep pretty quickly,

I was wiped.

I woke when D climbed in our bed

after a while I kept smelling gas again.

I mention it to Andrew.

He did not smell anything. I laid

there in bed telling myself it was nothing.

Andrew gets up and showers and I pass back out.

(like I did not sleep the entire night.)

The next thing I know the 2 kids that were in our bed

were gone
and
 Andrew is waking me.

I indeed smelled gas,

he confirmed the burner was on all night long.

It was on low so you could barely see it.

So, as I know I should trust my crazy dog nose,

I am glad that I trust my gut

and
 don't store things over night on top our stove burners.

Say like a child's lunch box..

I know I should trust my gut

I do and at times I try to convince myself

it is just paranoia or just flat our crazy,

then things like this happen
.

I was right..I know better.

Sometimes life is just ca-razy,

It could be worse, it could be better.

So many people go through so much more so why complain?!

I am nervous and exhausted today.

Tomorrow, I am signed up to run a 5K.

I wanted to go to it last year but was only

10 days post craniotomy,
but
I REALLY wanted to be there.

It is “Ella' Race.”

A little girl used to go to Aidan's school.

A couple years ago she passed away from

a diffuse intrinsic pontine glioma,

an inoperable aggressive brain tumor.

My Sister had told me about her,
I, at the time signed up for her Family's care page to

follow.

I learned of her passing
and
 it made me sad.

February 8, 2012, this was 12 days prior to

me learning of my irregular MRI.

So, last year her first 5k in memory of her I felt I really

wanted to go.

This year was a must.

It will also be a practice 5K for me

in prep of the Angels Among Us.

I have not been training like I want to.

Today,  my chest burns and stomach flips

on top of

just being exhausted lately

and

always feeling car sick when I am just looking down

in a non-moving car
or
 not even in a car.

Tomorrow, will also be a big day for Aidan also.
He is coming to the 5K too.
He also wants to run...

At his school when you are in Kindergarten

you get assigned an 8^th grade Buddy.

Well, Ella has a big brother, he is now in 8^th grade.

He is Aidan's KinderBuddy.

I wasn't surprised when I found out.

I was also informed that the school “manipulates”

things.

That said, well, perhaps the school is just trying

to help people have Faith.

Inspire Faith, that is so lacking at times

in this world.

Inspire that people are brought together

for a reason

or

moved apart for a reason.
**Not speaking of a child's passing **

Like I said last year, I REALLY wanted to be there

and
toyed

whether I would introduce myself

or

if I would chicken out

or

be observed as an odd ball looney toon.

I can only say trust your gut

and

have Faith.

Having Faith doesn't mean

that things don't hurt,

or

you don't stress.

It all just happens.

 Stressing, worrying, hurting

does not mean we don't

have Faith.

Perhaps, it is just a calling to show us where

were should look.

We can try and fail

over and over again.

We may learn things are not to happen

as this time..
or

That there are bigger and uglier things

we are being shielded from.

It doesn't make sense at all.

But, it is not for us to try and understand.

We have Faith that this is the Path

we are to travel.

Do we struggle?

Yes

and

we must carry on.

Do we all fail at this?

Yes, yes we do.

We ALL do.

We must get back up and carry on.

That said,

I am picking up my tired self

and
going to check on our Little's.

I am going to aim to get things done I hope to today.

I am going to hope
and
 fight to

have patience,
happiness

and

make sure I do not over look all of the little Blessings that

will shine today.

And try to forgive myself for all of my forgetfulness

yesterday that has only increased my motion sick feeling.

Today is a new and beautiful day

and

tomorrow will be too.

Now commencing my battle with myself...

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, 

2014 Angel's Among Us

2014 Angels Among Us

I owe this blog some posts

and

have a few sort of typed that I need to add too

just can't find the time. 

I just want to share on here, the Angels Among Us

tab is updated with this years information. 

It is coming at the end of April. 

I want to put the link out to the team page

for anyone interested. 

If you are local and would like to join the team

please do, if you are local and can't make it

or not local, a donation would be extremely appreciated. 

No size too small. 

Every dollar raised goes directly to brain tumor

research. 

Every little bit makes an impact on what they can learn. 

There are some amazing professionals 

working towards a better understanding

and 

finding a cure to those

nasty guys. 

I promise more posts will come..

and 

THANK YOU TO MY HUSBAND 

for his surprise blog bombing.  :)

Also, Angels Among Us Video

Angels Among Us shared this yesterday. 

A few videos have been made for the 2013 year. 

These are some wonderful 

and

super smart people. 

I feel blessed to have been a part of it. 

I still have yet to make my post regarding

our experience at the event. 

It will come.  

It is a little over 7 minutes video. 

It is a good watch. 

Right at the end in the survivor walk

leading into the Family walk

we are there

and

Andrew is looking right on at the camera

Celebrating Angels Among Us from Blue Water Media on Vimeo.

Where have we been?

Going crazy?

Very possibly. 

I am eating some chocolate and pretzels and sipping on a beer. 

Yup. 

It has been a while since I posted.  

We as normal have had a lot going on!

We sold our home we built!

After 8 years, we moved across town (nearer to Aidan and Daniel's schools.)

We now have a bigger yard

and

about the same size square footage. (a tad smaller..like 50 sq feet)

We closed on the new home on October 11.  

And the closing of our "old" home was on the 15th. 

We thought a few days overlap would ease the move. 

Hah!

We can dream right?

Here we are still in a mess. 

Supremely disorganized and tired. 

Logan had to go to  a new school since we moved into a 

new county. 

He is doing pretty good. 

The house we bought was empty since April. 

There were a lot of repairs that need to be done

and 

will still need to be done. 

Since it was vacant it was a bit yucky!

Lots of cleaning to do. 

Still not to my liking and soon enough will feel like our dirt. 

That said, it feels like home. 

The other house took almost 8 years to feel like home. 

Funny, huh.

I wake in the morning and don't expect to see our giant

vaulted green bedroom.

I am still not alarmed of the room I see 

just go.  Oh! Funny I did not expect to see the 

bedroom I slept in for 8 years. 

I have never really "moved."

Back in '83 my Parents moved to NC.

They are still in that house. 

My "moves" I remember are going to ECU

and 

marrying Andrew!

Andrew however, has a lot more moves that than under his belt. 

Some he may not remember much. 

His Dad was in the Air Force. 

Well, funny, to say, Andrew

was born in Germany.

Yup. 

From Germany, to Virginia, to South Carolina

to North Carolina. 

Yup, he has moved around some.  

We had some great help

and 

our very Thankful for all who helped us.  

In the midst of all of this. 

Logan got an earlier than scheduled call in with his

Geneticist. 

No answers, it turned into he got some weird genes from me. 

Then his Doctor turned to me and it was like

an appointment for me. 

My job is to inform all of my Doctors about this genetic mutation.

It is related to a rare disease called, "Acute Intermittent Porphyria."

My family doctor informed me I need to see a hematologist. 

So, yup. 

Never dull and all has to happen at once!

I don't remember if I ever updated on here.  

I saw my Neuro-oncolgoist in September and am 

able to stretch it to 3 month between visits versus

2 months. 

I will take that. 

As November turned, I was thinking, 

It has been forever since I have seen them!

It does seem like it because I would be prepping myself for

the visit that would be coming. 

SO yes, it feels like forever. 

It turns out to be on the anniversary of my 

MRI last December that scheduled the biopsy. 

That said, I feel like crap in general

and 

am feeling worse about this. 

It seems like a dream. 

At almost 8 months out I really almost think 

it was a bad dream. 

I was perky and positive then. 

I am having a harder time now. 

It is sinking in. 

I try not to let it get the best of me

but 

it is just  a constant reminder. 

It bugs me that it bothers me. 

I want to go run. 

But I am not because I feel like crap. 

But maybe if I run I will feel better?

But if I feel worse, I will have set myself back.

Anyways, I have lost my focus. 

I must make dinner. 

We moved. 

There is a lot going on. 

What's new?!

Our chaos and we keep on truckin'

just hoping to get back to 

my positive me. 

This non-positive me needs to go away and take a 

long walk off a short pier.  

I don't have time for her!

Our New Home. Top L-R: Toy room, backyard, kitchen.
Mid L-R: Dining room, stair case, office
Bottom L-R: Foyer, living room and Front

As you can see, stuff not done, no picture on walls yet.
It will come.

Office needs unpacked and organized and all the paper clutter should diminish.  :)

Room with a View

So, yes, Andrew posted in on Facebook but

 I thought I would share it here. 

We got a room with a view on Monday. 

I am talking to Nurse #2 when he snapped the shot

hence the funny posture

Mon-Wed in a Novel

Alright, so it is Wednesday.

My days are all jumbled this week

probably from a “lack” of routine.

Meaning, Monday was almost 5 hours a Duke

6 including the time to get there and home.

I missed Boot Camp that night

(HUGE routine change :) )

Since then the days are blurs.

Tuesday was relatively typical.

I guess it was just Monday that scrambled me.

The Boys are being good with lunch so I am taking the time

to type up a post.

The Boys are doing pretty well this week.

A day when someone babysits

and

we are gone like that.

The Boys dive back into the March time period.

Daniel goes to bed screaming, “My Momma, My Momma, MOMMMMAAA!!”

It doesn't matter even if I am the one to put him down or not.

It's the same.

He cries for 45 minutes.

I can go in there and he will refuse to sleep

because he is afraid I will leave.

So, we just let him cry it out.

Ugh. This lasted for a couple months

luckily it is just a night or two and then

we get our good bedtime DD back.

Biggun' knew I was going to talk to a doctor.

He asked, “Why is Grandpop babysitting? What are you doing?”

So I keep it generic.

So, Monday morning he was on the verge of tears at any little thing.

Screaming about most things

and

just completely out of sorts.

He's doing better now.

He also asked Andrew right before we left,

“Are you going to Duke?”

So, of course the answer is and was, “Yes.”

So when I go there I get a bracelet each time

and

of course you can only cut them off.

So when I get home, he wants to know why I have it on.

Then later says, “You were at Duke Hospital.”

I said, “How did you know?”

He said, “I don't know.”

Bitty was actually pretty good.

The morning after was touchy.

Every Tuesday morning he has a speech pathologist

who comes to our home to work with him.

He was a tad more particular than normal.

Needing a certain train set up, in the right order

with the right cars

and then

he would comply with her.

At OT in the afternoon he rocked it out!

He did some great things with her!

Which has been hard for him lately.

He for the first time he colored a picture with

minimal help!

Actually an entire picture!

He was pretty spot on at following directions!

Yes, these things may seem small

but are HUGE

for our Bitty Boo.

So, I guess what most want to hear is about

Monday.

It was my first time to get an MRI at the Cancer Center.

I learned a few things.

They have a new computer set up.

So after you check in that staff member is

to print off paperwork to give to the techs in the back.

Over an hour after my appointment time

and

seeing the staff from the back come up

and

tell people they are behind

but never came to me.

I decided to check on it.

Yup, my paperwork was never printed

so the tech staff never knew I was there.

They hauled me back ASAP.

Lesson learned to question much sooner.

I will be getting MRI's there from here on out.

That said by the time I was heading to the MRI it

was already past my appointment time with

my neuro-oncologist

but the radiology staff called up

and let them know I was here but they were running behind.

The people start walking me through the “procedure”

asking me all sorts of questions.

I got the nurse tech doing my IV laughing pretty good.

Then the MRI tech came in.

He was laughing good too.

They start to explain where I should lay,

the headphones,

the cage, etc.

I said, don't worry I have done this a bit.

This is only #5 for the year.

He was like, “Whoa! Seasoned Veteran!”

I am sure some people have probably had more.

So I know it is not much.

Definite change for me though!

They were very good. The IV hurt like a fool.

I think it was just the position of it.

I don't have any bruise though!

That is great!!!

So we then ran up two floors to the

Brain Tumor Clinic.

They nurse said, “Don't even sit down, come on back.”

So, she did vitals,

then took me to another room,

I give more information to nurse 2.

Then we wait for either a neuro-oncology nurse

or the nuero-oncology PA.

We waited and waited.

Then the PA popped in said,

I am running behind the new system is messing me up.

I will be in soon!

We waited a bit longer and he came in.

He thought it was the first time we met

but said, you look familiar

and so we said,

“we met you our first time here.”

Apparently, he doesn't typically do new patient visits.

Then he said, oh yes, I remember it now!

He did a few more tests than normal.

We laughed a bit.

I told him of my disorientation/spacy feeling

and

light sensitivity.

He got a “Hmmm.” Look on his face.

Then he said, after a bit more talking

Dr. Desjardin will be in soon!

Oh yes and he was surprised with what I do at Boot Camp.

Especially, 60 minute classes 3 times a week.

I told him they were just on a local news blog

and he said, 'I have to check that out!”

Then we waited more.

Then he came back in

to ask more questions.

It was at tad odd but

we go from the questions to laughing

about something.

Talking about Dr. Alan Friedman

and

me saying my neurosurgeon studied under him.

I said, “Dr. Grossi.”

And the PA said, 'I KNOW HIM! We ALL know him around here!”

“He is phenomenal!”

I said, “This we know.”

:)

Then he left.

So we waited more for my neuro-oncologist.

She came in with a student also.

Then not long after the PA popped back in too

to give me my paper work they typically give you for check out

and then he stayed.

She said my MRI is brighter due to the new computer system.

But the MRI from May isn't.

Who knows...

She said, “It is stable.”
OK.

Last time she talked with more details about it all.

And end up raving about the awesomeness of Dr. Grossi's

work on my brain.

This time she did not say much about my MRI

and

went onto she saw something in the news last week

that made her think of us.

We again forgot to bring the replica of my brain Andrew made

for Dr. Grossi.

Andrew made 3 copies.

She wants to see it.

So we pulled up pictures but said we will definitely bring one for her to see.

That said, Andrew decided she is awesome too and needs one for herself!

That said, we got back on the Dr. Grossi topic.

The student was laughing pretty good.

So she got to witness Dr. Desjardin, Cheshire the PA and Andrew and

go on about how freaking awesome he is.

The PA told us earlier also,”Everyone around here knows who he is.”

This I know because Dr. Grossi always told us

from Day 1 he was discussing my MRI's with the

people over there.

Anyways, so September with be my next one.

It was a definite different environment

this time.

Seeing it was only our 3^rd time there I don't know

what really it was.

But Andrew agrees with me it felt like something was up.

So to the back of the brain it goes for a month.

There will be anticipation the few weeks before the next appointments

but until then we got things here to do!

The wonderfully crazy and wild

awesome little men we have.

Getting things ready for Aidan starting kindergarten!

And of course having our home on the market!

Never dull

and

I am supremely light sensitive today

with

the off disoriented/spacy feeling

no migraines though!

OH yes that said,

I finally asked about why I was told to stay off of Advil.

Apparently, after brain surgery if you take Advil

you have a higher chance of a brain bleed.

One that they don't want me to take.

That said, those migraines better stay the heck away!

I can handle the headaches that I get

(more often then I prefer) but they are NOTHING

compared to the migraines!

And yes, the uterine biopsy I was told

by a nurse was, “Normal.”
A couple days later the OB-GYN called me

and gave me “options” of what we could try

addressing issues I have had with that from day 1

and not the issues I went to him for.

He started with “Your biopsy was normal.” A few minutes into

the phone call he said, “It was MOSTLY normal.”

What?!

I did not ask. I did not want to deal with it.

I need to call back and ask why he said that.

I have been told something like that before when there truly was an issue seen.

So, I was told to call back in a month or two

and

check in with him.

I will ask then.

Just will probably call on the sooner side.

Anyways, some Sweet Little Men need me

and

I want to have some fun with them

and

their Amazing Daddy,

my Wonderful Husband.

Oh yes and I should have PLENTY of energy to burn for
Boot Camp tomorrow morning!

A group of recent photos

L-R:
1. Aidan reading the Little's "The Very Hungry Caterpillar"
2.Bitty chasing/eyeing up one of his balancing structures
3. A positive attempt at breading some chicken that
no one is sensitive too
4. Bitty sporting his chocolate ice cream mustache
5. Aidan posing with his mango lemonade popsicle that we make
6. DD with his drip plate and popsicle after going down the slide..

Our Summer..

I have been a bit quiet on here.

Trying to find time to post.

But once the Boys get to bed

sometimes I am done too.

Or

If I try to write during the day

I don't want to miss my time with them.

Things have been on and off hard lately.

It is the ebb and flow of life!

Keep on truckin'!

Just some challenges with extreme criticism

due to a crazy 2013 so far

for a large portion of our Family.

Family..as in the extended Family too.

Some years are just like that and we keep moving on.

The weekend after VBS we celebrated my local Grandparent's 82 Birthdays.

My Grandpa's birthday is in April and all of our Family

did not get together like we usually do.

So, when my Grandma's birthday came

we celebrated both of theirs.

That said, I still have all 4 Grandparents!

All of them are now 82.

My Grandpa in Ohio will start the turn in

November, he will be 83, then my Grandma, his wife will be in

February, then my Grandparents here in NC are like I said before

April, then June.

Our Family is so incredibly lucky!

I know it has been a hard year for us all

but for us all to still be here together

is a blessing for sure!

All the crazy included. :)
So lucky,

My Grandparent's here in NC (my Mom's)
have 6 Grandchildren and 6 Great Grandchildren.

My Grandparent's in Ohio (my Dad's)

have 5 Grandchildren

and

10 Great Grandchildren.

Like I said, a blessing!!

Then all of a sudden it was July.

Of course, I wrote about he 4^th.

I have a few photos on here now.

Still need to upload the videos to You Tube.

Aidan in a nut shell.  Drawing, using some of the "Little's Legos" and his trial run for the 4th

The weekend after the 4^th we headed down to the coast.

My Parents have recently bought a boat.

A dream come true for them.

So we spent two days on the boat with them.

First time our Boys have been on a boat.

They did pretty well

and

we would cruise the first part of

the morning and wait for the tide to go out

then head over to a sand bar that shows up

and it's a nice “beach”

for the hours of low tide.

The Boys LOVED it

and

we caught a decent sized hermit crab too.

Bitty loved all the dogs people would bring with them

and

of course one of those days my Brother was

there

and

his pup Jefe boated with us.

It was very nice.

Been keeping it calm, the heat and humidity are in

good force.
Not as bad as some summers.

We have had a TON of rain.

So, that has limited some outside time too.

Must head to bed soon.

Tomorrow is MRI day and Neuro-oncologist appointment.

That said, I haven't done a count down like “normal”

one for sure being that would be a crap ton of

count downs for how long this will continue

and

how often also.

I also have been critiqued on my openness of discussing it.

I was told I am obsessing over it.

You know, it is on my mind.

I do forget it and then all of a sudden I remember it.

It all seems like a dream at times

then I get the nerve regeneration pain

where I had the craniotomy.

Which it is still numb so for it to hurt is strange for me.

Also, sometimes the numbness goes to tingling.

Sometimes the numbness still spreads to my eye.

Other times I forget I have it but rub my head

and

well, it's numb

or

I hit the scar and think,

“Man! I have some zits there!”

Then realize, they are not zits, I am touching my scar.

Or I pull my hair back without thinking

and you can see the area where the hair is different.
That said, I notice it because it is not how my hair used to be

people who don't know otherwise wouldn't have a clue.

That said, it really isn't bad. My hair there is growing out

and just has a different wave to it.

So when straightening my hair

and it doesn't comply as it used to.

Or I forget something I never would.

Or get an email reminding me of an appointment

or

with new results.

I still get those.

Just a constant.

Oh yes, and the first week of July

the disorientation and extreme light sensitivity came back

as bad as it was in January 2012.  Which is what caused my first EVER MRI 

and tomorrow will be my 8th ever and 5th one this year. 

Some days I don't have quite the energy at times

but it is a TON better and my more “normal” energy days

are more at least to 80% now.

My workouts are getting better too

but again

I use less weight then before

(another reminder)

and

just started being able to run.

I have chose to keep using the lighter hand weights

so I can gain back better with running

and when that gets good

then increase my weights back

to where they were.

I have a plan and modify it as need be.

As what life is.

You have to go with the flow,

fight where you need it

and

know when not to.

So yes, I think about it,

have to budget for appointments

and scans especially with our benefit period starting over soon.

I must think about it

most times not by choice

just by reminders.

I do prefer to be open about it because

I want to be.

I am not scared most days.

That said, I am a tad nervous the last few days.

First time in months.

I don't know why

and

that is OK.

Tomorrow will be here soon!