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.