Out of the Blue

And we back!

After years! (More like 6 months hehehe) I’ve returned to my bi-annual blog update.

And it happens to be on my birthday! Which is great because I just got back from BOSTON!

A lil recap of everything that has been happening since my last post:

• started a brand new chemo in early 2024

• My left eyeball has been ruining everything for me.

^^^^ That was exaggerated, but it is causing a lot of issues for me from intense dryness.

• I started taking Adderall earlier this year to help fight against the gnarly fatigue I have from chemo. It has been helping! Which is amazing since my constant state of tiredness was ruining my life. But also kinda sucks because I really do not need to be taking a bunch of medication.

• Speaking of chemo, it’s great! It sucks physically because of the side effects but it has been keeping my bajillion tumors on my brain stable !

• AND during my ABI mapping session, my word count increased from 4% to 12%! That might not seem like a big deal, but it is. I am hearing again with destroyed hearing nerves, seriously, a miracle.

• Finally, I joined a Cancer therapy group at Iowa. Although I don’t have cancer, I am a long-term chemo patient! I’m so thankful Iowa has a program dedicated to helping chemo patients. Everyone's health journey is different, but the emotions are the same.

Now for some not-so-great news…

I have to get surgery. AGAIN.

Not brain surgery (thank God) but spine surgery. I was not expecting this to happen. I know tumor surgery will always be a major part of my NF2 journey, but I just didn’t expect it to happen so soon.

The tumor that is being a jerk has been growing on my upper spine for a while. It’s now time to operate because it is beginning to push on my spinal cord.

Thankfully, it’s not big enough to be causing any issues, but it is still on the CNS. With this surgery, the risk of a stroke or becoming paralyzed is still possible.

SO.

Not great because surgery, not terrible because it’s not brain surgery.

However, it is still surgery and in a very delicate spot. It will require a chunk of time to recover from and for that, I am extremely bummed.

I feel like over the last 6 months, I finally started getting over the physical and mental struggles from my 2022 brain surgery, and now we have to go through it all again.

At least this time(hopefully) recovery won’t last 2+ years. I’m not sure when it will happen, most likely by the end of this year or next spring. My neuro oncologist in Boston would like it operated on within the next year. I still have to meet with the neurosurgeon at Iowa to figure all the specifics, but ya super bummed.

I really did not expect this. I know this is God’s plan and also part of being a certified tumor fighter, but yeah, it really, really sucks.

Anyway, on a better and less depressing note:

I AM 29! And still alive! Yaaaayyyyy!

That is probably the most important thing to take from this post. Although it looks like my condition isn’t getting much better, it’s not getting worse either. Stability and all the love and support I receive are what I’m most grateful for right now.

Thank you all so much for your love! I pray everyone has a great and safe holiday weekend!