A MUCH NEEDED UPDATE, I'M SORRY

Happy anniversary! It’s been like 1 year since my last post ! 

SUPER embarrassing, I know, I’m sorry for slacking. 

I will try to be better at posting in 2025 ! 

During my absence, you may have (or haven’t lol) thought about me and wondered how I was doing or if I am even alive (spoiler: I very much am!). 

. . . . . . . . . 

This past year has been something lol  

The main reason I have been MIA is that I started a new chemo. 

Unlike my previous chemo, this one has many side effects. Most are pretty mild and not life-threatening, however, one has taken a giant toll on me: fatigue. 

Yes, fatigue, AKA chemo fatigue, AKA feeling like bricks are taped to your eyelids, and you barely have enough energy to move. It has been a challenge. Every day, I have a few good hours of energy when I can do stuff like getting groceries, going to appointments,  or just showering, but then I crash. 

Coffee and naps help temporarily, but nothing has been helping, it has been a major struggle to find the energy to do things. I feel like I’m living life at 50% these days and find it hard to enjoy things when I just want to rest by like 11 am. It’s not ideal…

HOWEVER

Even though this chemo is kinda turning me into a moody, tired monster, it’s working. 

Working well, as in not shrinking tumors but keeping all of them stable. This is big because I still have SO MANY brain tumors just chilling in my head, along with some nasty spinal ones, and nothing has worked so far in stopping their growth.

but this chemo has.

I’m still cautiously optimistic since I know chemo can work at first but then start working less and less. 

For now, I am super happy, and 100% willing to take on any annoying side effects if that means no tumor growth. 

. . . . . . . . . 

Another issue that has been causing a lot of pain for me, is my eye. I am currently going through a lot of eye issues, specifically my left eye. It’s very, very dry, even with special contact lenses to keep it moist, it’s still extremely dry. The dryness makes it even more vulnerable to cornea scratches and infections. 

It’s been a difficult couple of months and the anxiety of possibly losing my eye weighs on me greatly. I pray it will not come to that. It is most likely my PTSD causing this fear, I’m going to try to ignore that thought until it becomes an actual possibility for my eye. Plus a little venting session with my therapist will help me feel better lol

BUT ANYWAY

SOME GREAT NEWS!

LIKE REALLY GREAT NEWS 

✨I CAN HEAR AGAIN ✨

. . . . . . . . . 

I know, I know. I’ve already talked about the ABI (auditory brainstem implant) that was placed on my brain during the big surgery I had a few years ago, and I’ve had great luck with having it turn on and hearing lots of beeps and boops. 

The beeps and boops have now synched into the rhythm and beat of spoken words, and the voices that started off as robot noises are now becoming clearer and clearer. With the noise my implant is sending to my brain and with my prior experience of hearing, the two combined are working together to give me the beautiful gift of speech without having hearing nerves.  I can now have short conversations without relying on my live captions!

I’m essentially relearning to hear again. Every three months I go to Boston and get my ABI mapped. This means the audiologist finds out what word sounds and pitches need to be added or tuned to help me hear better. 

At my most recent mapping, my hearing test score was BETTER than the hearing test I took before surgery. This means my ABI hearing has surpassed the natural hearing I had right before I went deaf! 

It’s truly a miracle and I’m so beyond thankful for my surgical team and audiologist at Mass. General Hospital for making this possible. 

. . . . . . . . . 

So yes, I still have many challenges, and I’m not sure what the future holds, I’m guessing more chemo and surgeries, but for now, I’m okay. I will always be okay--

BECAUSE. . .

I have a wonderful support system. I am fortunate to receive incredible care from some of the best NF2 doctors in the world(including care from the doctors and therapists at Iowa). Most importantly, I am blessed. 

My life is not easy, but I have SO many good things in my life, which makes it easier to take on this condition. Losing so much and hitting the bottom, only to stay positive and determined to rise again, has helped me gain a new perception of what I have been given in life, not what I have lost, and because of that, I am beyond grateful. 

really, truly, absolutely grateful.

Love, 

Rachel