Annnndddd We're Back !

Starting with the obvious:

it's 2021.

Yay!

Also last time I wrote, everything seemed to be falling apart.

I was in a darker place than usual and my scalp was no bueno because of my constant hair pulling.

HOWEVER,

one thing I have learned through my entire health journey is the power that comes with action.

Taking action in your life is the most powerful thing you can do.

I decided I should just cut my hair.

Let the bald spots show,

lets the scars out,

and let myself be vulnerable.

So I did.

I regularly picked the left side of my scalp and decided to get an extremely short cut on that side.

It's a small thing to do but the impact has been so so sooooooooo positive.

and

I also decided to move.

YAYAYAYAYAYAY!

My parent's house had became my favorite place which is both good and bad.

It was my safe place where I could go and nothing from the medical world would harm me.

but it was isolating and honestly holding me back,

mentally and physically.

The decision to move out was out of character for me and kinda impulsive, but I am extremely happy I did it.

For the first time since being diagnosed, I feel so incredibly normal.

I feel like I can be like any regular 20-something year old.

I can experience being independent for the first time, even if it's just temporary.

Speaking of,

even though my life has been going so great lately, I can't forget about everything that is going on inside my body.

It's easy to fall into this trap ,

an ugly, disgusting, terrible trap

that makes you think it's going to be okay,

since everything in your life seems to be going

okay.

buuuuuuuut it just doesn't work like that.

This past month I learned that the tumor we have been watching since 2013 had grown a smidge more since my last MRI in July.

nothing note worthy, just grew a 'lil bit.

However, that's where the issue begins.

Since January 2020 I have been on chemo, but specifically since June I have been on a higher dosage, to hopefully stop the tumor from growing anymore.

Unfortunately, that didn't happen and the tumor grew.

ugh. so gross, I know.

like,

It's extremely disheartening.

Moving forward with treatment will be tricky.

My body is finally showing the negative impact of being on treatment for so damn long (since 2014!!!) from horrible tongue sore to minor kidney damage.

This past appointment with my doctor in Boston was rough.

He told me that if I get off chemo, I will go deaf

he told me he hopes a new drug will come out by next year that I could take

he told me as of right now, there is no such drug and the clinical trails have not been successful.

I replied : "I'm willing to do whatever"

and I think that is the moment the reality of my situation had sunk in for both myself and my doctor.

everything went silent for a bit and we just stared at one another through the computer screen.

this chemo, the drug I am on, is the "whatever".

At this time, there is no other option except surgery.

HOWEVER.

Like I said earlier,

I am a believer in action,

Since first diagnosed, I had to make choices and take bold actions to ensure I will be doing the best I can for my body and my quality of life.

Choices that would impact my current and future self.

Those choices combined with actions has brought me to where I am today;

I am living, I am hearing, I am surviving, I am fighting.

NF2 has taken many things from me and will take away many more things from me as I get older.

I have accepted that part, but that doesn't mean those things will be taken from me without a fight.

choosing medicine over surgery had been a huge risk at the time, but the result of having more time to hear and given more knowledge and support has proven to be one of the greatest decisions I (well technically my parents decisions since I was still a minor LOL) have made.

It's given me time. Time to grieve, time to accept, time to think and time to grow.

As I am typing this, I think about how privileged I am to have been given this time.

Time to reflect and understand how truly fortunate I am.

My only other NF2 friend once told me that this condition was humbling, and I cannot agree more.

I've lost a lot of things like my hearing, my sight, my ability to walk or write.

I was robbed of being a typical college student or normal young adult,

but I have gained so much too.

I am lucky enough to have such an amazing family and friends who are willing to help and support me.

Who do not judge or pity me.

Who are willing to be my ears and support for when I need to listen or walk.

As cheesy as it might sound, I think I had to experience the ultimate lows so I can appreciate what I have.

I know life will get harder, but from all the support and encouragement I receive from my family, friends, doctors, and professors at MMU

I do not feel scared or sad.

I feel extremely okay with whatever happens

because unlike when I was first diagnosed,

I am ready.

. . . . . . . . . . . . .

Wow, okay that was like really long.

Thank you for reading this.

I can't help but feel so much better after I write and ramble about everything.

Anyway,

I hope I will be able to update soon!

Until then, peaceeeeeeeee!