Life Be Wild

Wowowowowowowowow.

Finally, a new blog post!

It's been forever.

IKIK (I know I know)

But I'm here,

Alive,

and semi-thiving!

These past months have been BONKERS.

I flew to Boston in April and was FINALLY given a surgery date:

August 26th, 2022.

So, I was very excited to finally have an eviction date to give to the giant tumor currently living inside my brain.

Once back in Iowa, I stopped doing rounds of the super high dose of chemo to prepare for surgery.

THANKFULLY, my kidneys were able to withstand the chemo and did not suffer anymore damage than had already taken place.

So, all was good! In 4 months I would have surgery and my plan was to 100000% enjoy my summer!

HOWEVER,

life be wild.

Two weeks after missing my first dose of chemo after leaving Boston,

My hearing dropped,

and soon the migraines starting coming.

Before I restarted chemo back in February, headaches and migraines were a thing but very rare.

This time was different,

migraines occurred everyday along with vomiting and major fatigue and dizziness.

By early June I had an emergency MRI.

I honestly couldn't take it anymore,

I was miserable.

No surprise the MRI showed little growth in my big tumor

But there was also minor growth in other brain tumors in my head,

which just caused a lot of pressure.

So thanks to modern medicine I was given some really, really, really, good stuff to help the CSF (Cerebrospinal Fluid) decrease a bit in my brain.

No more migraines !

Amazing!

HOWEVER,

life be wild

The medicine has it's side effects,

the biggest being fatigue and low-energy.

I'm trying to stay positive during this point and live my best summer before I fly out to Boston on the 19th, to prepare for surgery, but it's so HARD.

Physically, I am struggling.

My balance is pretty awful at this point,

I loose my footing a lot and trip.

Early this summer I start pre-surgery physical therapy,

which has been helping my maintain my current balance !

My energy level is non-existent.

I sleep A LOT.

Too much.

I'm either sleeping on sitting and zoning out.

This issues is rather frustrating because I'm just trying to live my vida loca

but how can I when I barely have enough energy to shower.

Also, my hearing is basically gone.

Which surprising, hasn't been as bad as I thought it would be.

Everyone around me is extremely accommodating and anytime I use my live transcribe captions at the hospital, almost EVERYONE is interested in learning more.

Because hearing loss is everywhere,

It's a big spectrum that ranges from a little hard-of-hearing,

to completely Deaf.

But emotionally, mentally, and spiritually: I am so happy.

However surgery itself,

is completely unknown.

Which,

if I think about it too much,

can interfere with my happiness and I begin to spiral.

You see, every NF2 patient is different,

therefor surgery outcomes are all unique and special.

I hope I will come out of mine with a positive attitude and determination to overcome any negative outcome that might occur.

And mostly, I just want to be okay mentally.

My first surgery, I had no idea what to expect and as a result I didn't handle it well and went into a very deep depression.

This time around I know how much of a role mental plays in recovery, so I have been meeting with my therapists weekly to create plans and coping mechanisms so I don't hit any low points again.

Preparing for a 12 hour surgery with so many unknowns is honestly impossible but I'm just really trying.

I just want to stop feeling miserable and just to be okay.

So ya, that's that.

Anywho,

I'm honestly not sure if I will get a chance to do another post before surgery, but I want to thank everyone for their support and prayers.

This is a very scary time for me and my family but we have faith in my surgeons that all will be okay.

Even after this brain surgery, I know the real fight against NF2 will begin as I have to face the other brain tumors and tumors in my body.

HOWEVER,

life be wild

And with all the love I am receiving, I know in the end it will be okay!

It will be hard, but we can do it!

Your girl still gots this! I am just a little more sleepy these days but I'm still here and am given the chance to keep going !