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?!

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.

Time flies..

Oh My, it has been too long since I last posted.

The crazy wonderful chaos continues!

Our Biggun' finished preschool, he met his Kindergarten teacher,

saw his classmates and classroom too.

Here is a collage of his preschool years.

Where does the time go? This went so fast,

we are going to blink and he will be in middle school, then high school

then college?!

I know each stage of life is supremely special in its own way

I just can't have it go by too quickly.

I know the hard days seem to last incredibly long

even though they really don't

in comparison to it all.

June 13^th marked 3 months post-craniotomy.

Funny enough on this day, Aidan picked out his

Angels Among Us shirt.

Coincidence? Yes.

However, my heart always tells me there is a bigger

meaning behind it, even if he is not aware.

I take it as a sign.

You may not, I do.

We do what we must

but it helps me get through days.

All of this has not been easy on any of us in our Family.

I know this.

It also goes to show with how everyone reacts or treats us or even just me at times.

I try to not get mad,

we all must cope somehow.

I think some days people (not the ones in our home)

get mad that I am not mad.

I can't be mad, I have to see the good in it all

otherwise,

I would not be able to get out of the deep dark hole

I made for myself.

Trust me, with all we have been through I have learned that.

It is not fair to my wonderful Husband or our Children we have been given

That said, I am not graceful.

I try and fail every day.

Some days more than others.

As I got the last MRI report, it is hard.

As the ones that started out in February 2012, they said, “non-enchancing cystic lesion”

to the wonders of a congential tumor, to the finding out it is a glioma, more specifically an

astrocytoma with some oiligodendroglioma cells also.

To it being “benign” yet I have “pre-cancer” issues

to know since surgery my left over tentacles enhance with contrast dye

and are now deemed

“Malignant.”

Nice, huh?

That said, I am a Wife, Mother, Daughter, Sister, Granddaughter, Niece, Friend

I won't let that shape me.

I am me, the other crap is just crap.

It is a given challenge to face.

I am who I am and will continue to be me.

I will not let all of that eat me apart.

Want a few facts?

**From http://www.abta.org/news/brain-tumor-fact-sheets/ **

For every 100,000 people in the United States, approximately 221 are living following the diagnosis of a brain tumor. This represents a prevalence rate of 221.8 per 100,000 persons.

Tumor-Specific Statistics

• Meningiomas represent 34% of all primary brain tumors, making them the most common primary brain tumor.
• Gliomas, a broad term which includes all tumors arising from the gluey or supportive tissue of the brain, represent 30% of all brain tumors and 80% of all malignant tumors.
• Glioblastomas represent 17% of all primary brain tumors, and 54% of all gliomas.
• Astrocytomas represent 7% of all primary brain tumors.
• Astrocytomas and glioblastomas combined represent 76% of all gliomas.
• Nerve sheath tumors (such as acoustic neuromas) represent about 9% of all primary brain tumors.
• Pituitary tumors represent 13% of all primary brain tumors.
• Lymphomas represent 2% of all primary brain tumors.
• Oligodendrogliomas represent 2% of all primary brain tumors.
• Medulloblastomas/embryonal/primitive tumors represent 1% of all primary brain tumors.
• The majority of primary tumors (34%) are located within the meninges, followed by those located within the frontal, temporal, parietal and occipital lobes of the brain (22%).

All that said, why be like everyone one else?
 This we all ready know, we are all individuals.

Also, most medications.. my body hates.

The side effects that are in the 6% or less range I usually get.

I have always forewarned medical staff this,

the few times I have been a situation that needed medication.

They just all smile and go on their way.

The wonderful professionals I am with now witnessed it.

They believe me and now since what happened post surgery

all my other MD's believe too.

Never dull I tell ya!

It will only give professionals more information to learn from.

Knowledge is power.

Since my surgery other issues have shown up and maintained.

I will have more information after another appointment this coming Friday.

Again, like I said earlier. I know the facts and I know my life.

It will not take me over.

I won't let it.

Life is not easy.

I remember being told that things that are easy

aren't worth having.

And

that is OK.

I am a tad exhausted from last week.

Last week was Vacation Bible School at our Church.

My Sister was one of the co-directors in it.

Volunteers took a while to fill in the last holes.

I told her to put me in the least liked one.

That way the others would more likely fill.

I have to say, last week was AWESOME!

I loved it!

Aidan thoroughly enjoyed it and the Little's had some fun too.

It was harder for Bitty and D

but they ended up doing well.

We got a CD of the songs we listened to all week.

In our home it has been listened to for weeks before VBS.

I know they are kid songs but

what they say are something very appropriate to

what you go through in life.

They fit with what is going on for us for sure.

I oversaw a group of pre-teen and early teenage Boys who were

to take photos each day and create a slide show for the end of

each day and

a bigger one for the finale that all Parent's are invited to.

It was a honor to work with young men who

were polite, nice, hard workers

and

were able to get the job done with little redirection.

They also got to give their input

and

put it into action.

I am exhausted from it

but would it again

in a heart beat.

Like I keep saying, I can let the crap tear me apart

or

do my duties 

and 

make the best of it all.

I don't want a deep dark hole.

I can see and acknowledge things are not easy

but 

there is so much more to everything

than just that one nasty spot.

We are 4 weeks from my next MRI.

With how things go, it will be here in a blink.

My next post will hopefully be sooner than then

and be the one I want to give to

the awesome Angels Among Us event in April.

They have posted on their site

all of the photos they took.

Just looking through them all the other day

brought me to tears.

At times it all seems like a dream and like it never really happened.

Then I touch my scar and still don't have all of my feeling back

on that area..

and..

it becomes real again.

10 Weeks Post-Craniotomy Novel and Neuro-oncolgist visit

10 weeks under the belt.

I guess in a few weeks I will stop counting

at least on here.

I think it will always be on my mind.

On Monday was my 2 month post-op

rescan.

So, yes it was a little over 2 months from my

last MRI, but now we are on a roll.

Andrew as super busy at work.

I hit the MRI mid-morning

by myself.

First time ever.

This was MRI #7 in 15 months.

So, yep.

15 months 7 MRI's

and

in the last 4 months

2 CT's.

That can at times be hard to swallow.

I at least get a break

for 2 months now.

I am sure there will be a few more things done before then.

Yup. We never want to stay dull.

You know gotta maintain our

chaos level.

If it calms too much

it is a calm before the storm.

So please just maintain our typical

chaos.

Norm is a bit nicer than a huge storm.

I tried to keep the MRI peeps entertained.

You know.

It was at a mobile MRI place

I have never been before.

So they don't really “know”

so you slowly tell them.

Yep.

I had the nurse and the tech laughing pretty good.

They smiled a lot.

You know Monday's can be crazy

so if you can keep someone's

nice,

You may as well.

Around 2p we left for my

neuro-oncology appointment.

This is something that is interesting.

You know where you are going

but then

you pull up outside

Duke University Medical Center.

Yet, I don't go into the main hospital.

Where the Brain Tumor Clinic is

is at

The Cancer Center.

Yep, so, it's hard.

You feel like people look at us

wondering where we are going.

There are a lot of people older than us.

Yet, here we are.

I know there are people our age or younger

doing the same thing

but you don't always see it.

So we sign on in,

I fill out

my paper work.

Then the Nurse calls us back.

This time was a few less professionals

then in April.

Weight, check, BP, and a few questions.

Then move into our room.

This time instead of meeting with the PA

we met with a NP.

She was nice.

We had her laughing pretty good.

They touch base on all that is going on

and

yup.

We keep them entertained.

She was super nice.

She asked me a lot of questions.

Then checked me out.

Typical, listen to your heart,

your breathing,

then they (typcial for me)

check my peripheral vision,

check to see how my eyes respond to light,

look down my throat.

I then get to do a memory test (slight FAIL)

they give me three simple words

to remember.

So since I failed miserably last time

I tried even harder to remember.

I said the words out loud a few times

and figure I was good.

Then she asks me to spell, “House.”

Then spell it backwards.

Then, OK I am kind of fuzzy here and

will probably not mention it all.

OK..I know now, subtraction questions.

Then check my reflexes, balance,

strength.

While trying to explain what I am doing
Edit: Her telling me what I am to do
and me slowly processing the task she is asking to test 
strength etc. 

she can see the amount of time it takes for me

to process the information.

I am slow.

It happens.

And that is OK, but sometimes

something I don't always notice

but it's pretty obvious there.

Then after all that.

What are the three words?

I said, “Uhhhhhhh...”

Then I remember (I try to think pictures.)
It helps me.

“Cake.”

She said, yes.

Then I thought a little longer....

Ummm....

uhhh......

“Tree?!”

She said, “yes!”

and

then just like last time...

The last word...

I don't remember.

So I think, and think

and think...

then she gives a hint.

I got a hint last time

and still answered wrong.

This time the hint helped

and I said, “Chair??!”

She said, “YES!!”

Whew.

Yes, so cake, tree and chair.

I had a hard time to remember it after 5-7 minutes of time

passed.

She said, my MRI looked pretty good.

I asked about the mentioning of “Oiligoglendroglioma” charateristics

inside it all.

She said, there are some parts that look like that too

however, it's not enough to change it to a

“Mixed Astrocytoma”

they are still

sticking with
“Grade 2 Well-Differeniated Astrocytoma, Recurrent.”

Whew!!!

I am having some hormonal issues

so I asked about if that is typical.

I have already had to go to my Family Doctor

due to some issues

now I have another appointment I have to see

my OB-GYN due to recurrent issues
 due to the stress the craniotomy put on my body.

The neuro-oncologists say, “Yeahh..that's not our strong point.”

You should touch base with them.

Which I had and was awaiting a call back.

(Which came the moment I walked in the door from Duke.)

I was hoping maybe someone may have mentioned it before.
Guess not.

We like to be different.

So, when Dr. Desjardin came in she pulled up my MRI

for us to see how it looks.

Back in April she said it was such a clean resection

and

she was impressed.

She told us the hole would get smaller

and

she would be watching if the tentacles come back.

Well, this time (they always slowly feed you with

a tad more information each appointment)

**This is how Dr. Grossi did it too. **

And we are perfectly OK with that.

Things goes on a need to know basis.

This time she said, (something we have heard from Dr. G before)

you know we can not remove 100% of the tumor due to the

tentacles creeping into normal brain tissue.

So the tentacles are still there.

You see this fuzzy line right here?

These are the tentacles.

Last time we got pointed out a nice clean line

and the difference of the clean line versus

pre-op MRI of the tumor and the big tentacles.

So, if anyone has tried to read up.

Astrocytoma's are infiltrative tumors.

Due to the tentacles constantly creeping into

every nook and cranny possible.

You know, kind of spider web like.

She did say, the fuzzy portion is exactly

like they were on my MRI from a couple days post

craniotomy.

And again she mentioned Dr. Grossi's work

but this time saying,

“This is the BEST Grade 2 resection I have EVER SEEN!”

Again, mad props to the amazing Dr. Grossi!

Seriously, people.

A-MA-ZING!!

So, in July I will be back and

how the schedule worked out

this MRI will be on site at the Cancer Center

then I head up 2 floors to the Brain Tumor Clinic.

The nurse that followed in with Dr. Desjardin

walked right in and said, 'You LOOK WONDERFUL!”

She sounded surprised.

I don't know how I am supposed to look

and

people at all my Specialist Offices

keep saying it with shock in their voice.

I guess I will take it as a good thing.

I am not anywhere near where I was before heck even

my biopsy.

But, I am working on it.

I am determined and will kick butt.

The things that are hard are, well,

I was given a “Survivor” shirt.

I think, compared to what others have gone through

I have done nothing compared to them.

I don't feel I deserve it.

But then, I realized that's not true.

It's hard to be.

It will come back.

They just don't know when it will

and depending on how it comes back will

possibly be a third brain surgery

or

only chemo.

But, there will be chemo in my life.

They just don't know when.

So, at a Grade 2 it is benign

but I go to the Cancer Center.

Even if my Grade 2 tentacles grow

I will go on chemo.

If new spot shows up, it will most likely

be a 3 or 4 because they have a high

tendency to come back more aggressive

at 3 and 4's it's is brain cancer.

If in an operable place it will be re-sectioned

and

I get chemo.

It could happen any day now

or in

20 years.

But as Dr. Desjardin said,
“It won't get there because I will be watching it so close.”

So yes, we will catch it early again

and

I will continue to kick it's ass and take names.

It was just finally hearing that again

and

finally realizing it.

I knew it was something that will be done

for the rest of my life.

Which I will tell you I will die somewhere between 85-95 years old.

So, it's going to be a long time.

It just finally clicked to the understanding

of claiming

“I am a Survivor.”

Because I will.

So, since our fabulous experience with Angels Among Us

I have now worn my Survivor shirt

twice.

I may as well own it.

I wore it yesterday all day for all to see.

Last week I wore it to my 3^rd time I went to Boot Camp since

my craniotomy.

Oh yes and Monday I went to my 4^th class since surgery!

Working the way up

but probably won't get to class tonight

because I don't think I physically can do it

but we will see how the rest of today goes.

So I have a photo of me at 2 months to the date

post-op and post Boot Camp class #3.

Yeah...I was nasty sweaty. :)

My as well own it. (The Survivor title.)

It is what it is. 

Why fight who you are. 

And a photo from this morning in carpool

of our sweet Aidan.

Tomorrow is his last day of preschool.

Today as the last day I will drop him off

tomorrow his class meets a park for a

party.

Where did the last 5 years go?!

We stay on our toes!

Let the chaos continue!

Thank you Lord for keeping us challenged

and

getting us to understand how we listen to your Plan for us.

Thank you, thank you.