Here we go again

Hi !!!!

I hope everyone is thriving and having a good December!

Since my last post, not much has happened to me health-wise, thankfully.

I recently had my regular 6-month brain MRI and my annual spine MRIs that are split up into 3 sections: cervical, thoracic, and lumbar or upper, middle, and lower.

I also just returned from my appointments in Boston!

The good: My brain and lumbar appear MRI are stable !

The not-so-good: my upper and middle spine MRIs showed growth and a new tumor.

In an ideal world with NF2, I would love to never have to deal with any more new tumors and just focus on the ones growing, but it is what it is.

After this last surgery, I fully accepted that my life is always going to be full of tumors, chemo, and possible radiation.

Although this is not the life I would ever want myself or anyone to have to go through— I’m extremely fortunate to have access to the doctors, surgeons, and therapists to help me deal with this condition.

Going to Boston, receiving care, and learning/getting involved in my health condition, is extremely empowering.

I’m so thankful that Iowa City does such a great job at accommodating my care plans that are made in Boston.

That being said, after my last trip it has been decided that I will be starting a new chemo treatment.

I’m not surprised, just disappointed.

I really didn’t want to restart treatment but if the tumors in my spine grow anymore, I will probably have surgery again within the next 2 years.

Again, I'm not surprised. I’d much rather take on chemo than have to deal with another surgery, especially since my physical and mental health have gotten back to a good place!

It’s wild to think that a year ago I couldn’t walk or be independent. But now I can do yoga and walk miles without much issue.

It's incredible! Honestly!

Speaking of incredible, my ABI works phenomenally!

While in Boston, I met with my audiologist who helped during my ABI placement during surgery.

Since getting it activated last June, I have been able to hear again!

And hearing is different than understanding, I have been extremely reliant on live transcribe for all my conversations.

However, this past appointment, my audiologist did mapping or tuning of my ABI, and since the adjustments my hearing has improved SO MUCH. I am now able to carry on a conversation without the use of captions! It’s incredible.

Although I am still Deaf, the ABI has given me back something I thought would be lost. I’m so grateful for where I am in life right now after having an awful past year.

Knowing that I am in good hands, and being more involved in my appointments/learning about the medical advancements for NF2, gives me the courage to take on all the possible surgeries and chemo I will have to face in the future.

Honestly, this last surgery brought almost every fear I had involving NF2, but I was able to overcome everything despite how hard it got.

Looking ahead, I’m not stoked about starting chemo but I must stay positive despite everything!

The overall impact NF2 has on a person is unfair and heartbreaking. I just wish that this condition never existed and no one had to go through this pain, but I’m hopeful that more developments in medicine and technology will be able to help everyone suffering from this condition.

I will be heading back to Boston this summer to meet with my doctor and have my ABI mapped again.

With more energy coming off my previous chemo, and having my independence back from brain surgery, for the first time in forever I feel back to my regular self !

Thank you all who have/had prayed for me! The support and encouragement give me the strength to keep writing and advocating. I hope everyone stays happy, safe, and healthy over the holidays. <3