Small Glmipse of Ramblings of a Mother's Brain

Just one of those days. 

My vision has been off since my migraine yesterday that truly interfered with my vision more than “normal”. 

First migraine since summer.  I am not a fan of those.  Definitely not a stress one because this school year has been one giant massive terrible ball of stress. 

Fighting for understanding, acceptance and working with Bitty. 

I had this crazy idea that perhaps I could find a small part time job. 

I miss my paycheck and want to put some extra money away for when all hell breaks loose. 

Which is a frequent occurrence.

 However, my days have been spent with phone calls, emails, appointment scheduling, volunteering, being Therapist Mom for Bitty, and being Teacher Mom for Bitty. 

After 12.5 days of school he was forced to perform half days due to him being “tired” so a massive schedule change before he could even vaguely attempt to adjust to the 12.5 day brand new schedule change. 

I was in contact with his Therapists, his Developmental Pediatrician, meetings with his teachers and others school staff.  These were not short meetings.  During those meetings we are repeating all that is stated in his IEP. 

The IEP we handed to him just to let them look over to see if it was anything they could work with before we even got any hope of filling out an application for him.  Those needs listed are still the needs he has.  Yet it is an OLD IEP from when the public school pushes children with preschool services into kindergarten whether they are ready for kindergarten or not. 

The school wants him to have a new one.  We are working with that. 

The staff are not staying consistent and pull the fear card of concerns with him. 

We have countered with writing letters, organizing thoughts, pulling paper work, forms, data support to confirm the information we share, we beg for them to use the resources we have.  The wonderful support staff that have grown with Bitty, has offered information to share and teach about Logan’s needs, they offer their time and to always be an open point of contact to assist during difficult times.  Bitty has a new therapist who has come to observe him at school and offer input.  She has joined us on our biggest meeting yet.

 We have expressed we will give our time as extra hands if need be.  We make supports and that they can run support ideas by us for we have given it 4 years of trial and error.  Surprising enough, as Parents we are his in home teachers and therapists.  What we used can easily be paralleled into the classroom. This information is not well received. 

That in itself is massively frustrating.

We are jumping through hoops for them and will continue to do so if we must to help our Bitty.  We are only 4 years of experiences so our agility may not be great but over time if this continues we will be pretty well versed in it.    

That said, we do have two other kids who need love and attention who feel the stress that this above listed drama seeps into them. 

The home tension is thick on many days.  This does not feel wonderful to the other kids. 

They want time and attention too.  Even though they are “used to” the focus on Bitty. They still don’t understand it as none of us do.

 They see his troubles and see attention received as we work through those. 

The other two in turn reflect the images those images in grasp for time directed at them. 

They need their time and fun experiences.  They need to grow and learn with Mom and Dad too.  They too also have things that they struggle with and we must be sure to take the time to help teach how they can work through those times. 

This however is just a typical Parent’s job.

As pointed out all we do for Bitty in one of our meetings, a school support staff piped up that it is what we do only for one and there are two others not even mentioned towards that effort and time. 

It is the job we signed up for.  Our choice to be Parents. 

These battles, people call it advocacy.  That is just a pretty word to use for a battle.  At least that is what it feels like.  We are exhausted but can’t sleep.  We must plan and organize but thinking is very difficult. 

I mean the work to fight this battle is 40 hours at least, then we add we need to work with that child and our other two with homework or just a game or heck read a book. 

Do we need to pay our bills? Food in the pantry?  We have to cook, right?!  Laundry, do we need clean clothes?  Does the house need clean?!  Are our pets fed and watered??  Oh wait, time for ourselves?!  What is that!?  Our time together is planning for the next meeting.  The follow up contact regarding information given and or shared.  Getting all I’s dotted and t’s crossed. 

Oh do we have more appointments coming up, oh crap I overscheduled. 

Oh yeah! We must take care of ourselves too. 

Tired but can’t sleep, throw some time for yourself in there but your brain just won’t stop running through the “to do’s”??

Oh wait, did I email my Doctor back? 

You know I really need to. (And I did.)

My neuro-oncologist thankfully uses email for contact. 

I was supposed to update her about my headaches.  How they are doing, perhaps they are stressed related?  I need to relay appropriate information back to her so they can determine what they feel are the cause.

My MRI’s are stable but the headaches are making a comeback not just any headaches, migraines with aura changes.  That’s all. 

Remember though, I am suffer terrible reactions to migraine medications. 

The oncologist feels strongly against usage of NSAIDs post brain surgery.

Why, you ask?

If you take them post brain surgery you have an increased risk of brain hemorrhaging and she doesn’t think a gamble is worth the risk. 

The headaches and migraines feel just as they did prior to Arnie’s discovery and post his resection. 

So, we have an option, I deal with it the headaches as I have since they ever started just only use of Tylenol which does nothing other than take a slight edge off.  The “fix” to just turn off and wait for it to pass.  I can feel off for days.

Don’t worry, I don’t have anything else to do. (sarcasm)

The other option that was mentioned in July was chemo. 

Yup.

We did not share that publically at the time is was presented.

 Dr.  Desjardin described it as Arnie’s remnants are just a splinter in my brain and like a splinter can cause pain and irritation.  The extremely low dose of chemo can help soothe the irritation.  It will not attack the remnants as Arnie’s remnants are not “active” they are in a “sleeping stage.” As we were told in 2013 that his remnants will wake up one day and a new battle will begin but you never know MAYBE Arnie won’t ever wake up but that is pretty slim. 

She made sure she mentioned how odd his tests ran that she had not seen on with numbers like his before so maybe he will stay sleepy! She said all of that with the added but if we use chemo and he wakes up, the chemo has a first line advantage to kick his ass the moment he starts to even blink.

We recently agreed we are on a, “I just suck it up” agreement for pain. 

They are concerned with quality of life but I can handle pain it has yet to fully take away my quality just make some harder days. 

So, all of that weighing on us since July and the fear of Kindergarten for Bitty to the real life advocacy and acceptance road we have begun. 

As you see just those two topics takes up a lot of space and thought and just barely glances our other two Kids. 

These two topics will always be in our lives and this is how things usually will be.

We do spend time with our other two, just not as much as we like to. That said Bitty needs time to just like them! Not just therapy and work time for him. 

They all 3 need time to be “typical” kids and have ‘typical” Family time. 

Oh yeah and one of us has to be at work so we can have our home, electricity, water, food etc. On top first page of to do’s and needs. 

Oh yeah, Friends?!  We want to see them to. 

Extended Family!?  

Crap.

The list will always continue to grow and some things get dusty when they slip through the cracks. 

We must battle insurances too.  It is fun and you know what?!

This is absolutely miniscule compared to what other Families need to do or have thrown at them.

Tiny, just the start of a can of worms. 

Things truly could be even harder and if they ever turn that way we will continues to fight and move. 

Quitting is not an option, neither is pity. 

No pats on the backs. We are just working with what needs to be done for our Family.

Just knowing so many more have to work through darker woods keeps our lives in perspective.

The only purpose of this post is to spread knowledge and experience in hopes of reducing judgement and misunderstanding in Society. 

Just hoping to spread some insight and words with those who choose to have open eyes, ears and hearts. 

Perhaps, in time there will be more people like them in the world. 

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.

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..

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.