Sudden Clarity

Happy winter!

I hope everyone is staying warm and safe as we enter into the winter szn (season).

Cedar Rapids was gifted early with a snowstorm.

And because of all the snow, my trip 6-month trip to Boston was cancelled.

So sadly, I do not have any big juicy health updates…

Well, actually I do lol

Lots has happened since my last post in July.

Lots of good and wonderful things:

• I am an aunt again! Baby Malcolm was born in October, and he is the chunkiest and sweetest little boy.

• I also got a kitty! I’m a cat-loving lady, and Banana (my cat) is OLD. After much consideration and thought, I finally did it: I got a little boy kitty, Mango. He has been a huge blessing for me. This tiny orange kitty has been a wonderful source of distraction and responsibility for me.

• And guess what?! ! I currently DO NOT NEED SPINAL SURGERY. However, that might change because I am getting another thoracic spine MRI in March, and it might have grown. Nevertheless, I am still in the clear. In August, I reviewed my latest spinal scans with my Neurosurgeon at Iowa. We made a plan: to watch my spine even more closely now. By this, it means instead of getting a spine MRI every 2 years as I have been, I will probably get spinal MRIs twice a year. The watch and wait tumor method is hell, but hey, at least I have a plan now moving forward.

• But unlike my spine, my brain MRI is currently super stable! I mean yes, the tumors are still growing, but at a very small rate. The chemo I’m currently on seems to be working for the tumors in my brain (not so much my spine RIP), and it gives me hope that there will be more treatment options offered in the future!

• I also started seeing a psychiatrist! Recently, after the surgery announcement dropped this summer, I became extremely paranoid and was overwhelmed with intrusive thoughts and tics. It was something I had never experienced before, and I was so angry and scared all at the same time. My mental health team at the UIHC pediatric oncology clinic are the true MVPS and helped me out ASAP. After meeting my psychiatrist, we finally figured out the problem. Due to the trauma of my last surgery (that I will probably never stop talking about 😂) and the impact of NF2, I was diagnosed with medical PTSD and OCD. So not great, but now at least we know what is going on with me

• And finally, group therapy has helped me so much. The group has given me a place to learn about other patients and their similar experiences, while also sharing my own issues! It’s honestly very validating. A lot of what I have endured so far, not just medically but also in my daily life, mirrors what other chemo patients have to deal with. It’s so easy to feel alone with my condition, but this group has given so much strength. All the wonderful people who show up and take control of their mental health is so inspiring. The shared courage and vulnerability in the group is incredible. It gives me the strength to keep fighting.

  
  

Now that we are all caught up on my medical journey, I want to share an incredible experience (if not a miracle) I had this past summer.

ANYWAY,

Here it is, please enjoy!

…

After I returned from Boston, I was a complete wreck. The idea of having surgery again really did a number on me. Mentally, I checked out and became numb, angry, and full of so much fear.

July was a pretty sad time for me.

Grieving the unknown future along with the panic and fear,

Consumed me.

This mini breakdown unfortunately, overlapped with our family vacation.

I knew it would be a rough trip AND that I would make it harder than it needed to be.

But

I was just so lost

I didn’t know what to do.

It was like everything was just ripped from me suddenly.

As expected, vacation started off as a dumpster fire.

I was sleepy every day.

I was mad that I had to leave the safety of my bedroom.

I hated the place we were staying,

I was constantly thinking about how my future will be if I have to keep getting surgery,

Everything felt wrong,

and I wasn't helping myself,

I made a lonely situation worse by going into isolation,

But

By the end of the week, everything changed.

…

You see, I have a HUGE family.

And every summer we go on a vacation with one of my cousins and her family, who live all the way in Reno.

So this isn't just a simple family vacay, but like a reunion with cousins I only get to see a few times a year.

After isolating myself for a few days, I finally left the bed that I had mostly stayed in since I first arrived to the resort.

I didn't want to ruin this trip for myself more than I already had.

I needed to stay present and grateful that I have this chance to see my long distance family.

When I did finally join up with everyone, I recognized a familiar face in the group.

And for the first time since Boston, I felt happy.

I didn’t feel so alone on this trip anymore.

I had a friend now.

I had Kele.

…

Way, way, way back in summer 2019, a time when I could still hear and was just a college student trying to make it to graduation before going deaf, I met Kele.

Kele came along with my Reno cousin and her family.

And immediately, we clicked.

Kele is from South Africa and was staying with my cousins in Reno.

After vacation, they stayed in Iowa for a bit, and I got to make a new friend, AND it was with someone who didn’t know about my medical issues or disability.

Since she didn’t know about my situation, I didn’t have to go into detail about my health and all that jazz.

Unfortunately, my cousins had to head back to Reno, and Kele would eventually head back to South Africa.

But like no worries, because technology.

We stayed in touch through Facebook and texting, but then 2020 happened 😑

I’m not entirely blaming the pandemic for ruining potential bestieship with Kele. A lot of other things happened too, like my surgery and losing hearing, along with the life changes Kele was dealing with.

Not surprisingly, we ended up losing contact.

BUT

Her friendship was something that was unexpected and needed.

I valued it deeply.

Fast forward to this past summer and back to when I was a big mess at the beginning of vacation.

Seeing a person, a friend, whom I never thought I would see again, was incredible.

It honestly was wild.

At first, I thought I was just crazy and seeing things.

But no,

Kele, my long-lost bestie was also on our family vacation.

And her presence was the greatest gift.

Because reconnecting with Kele, when I felt so empty, was the best thing for me.

I no longer felt alone.

. . . . .

With all the sudden excitement, I almost forgot about one major detail: I was deaf.

So, I had to come clean to her about all my health stuff, and that scares me.

I never know the response I will receive when I tell someone I’m deaf; it can either go well or badly.

I was anxious, but thankfully, Kele was very understanding and didn’t let my disability be an issue or make conversation with me seem like too much work. After catching up, I also realized we both have gone through SO MUCH since 2019.

It wasn’t just me who had suffered through the ugliness of reality, but her too.

Despite it all, we both survived and were able to reconnect again.

Just like before, we vibed so well,

It wasn’t like six years had just passed; conversation was easy peasy.

I’m beyond grateful I had that experience, because it brought clarity to me at a difficult time.

I was so lost in my own troubles and worries that I stopped caring about others.

God taught me a lesson and, at the same time, gave me a gift.

I’m truly grateful for that.

I try to remember how lucky I am during times of uncertainty involving my health, even if I can't fully control all my reactions, I can at least try my best to minimize the damage they cause.

Which is also crazy because that is exactly what I am working on with my psychiatrist: understanding and controlling what I can.

And that was the story of my mini-miracle I had this summer.

I am sorry for how long it was. I have had that story in my drafts for months, and I really needed to share it.

But yeah, I appreciate and cherish everyone who has entered my life, and that experience reinforced how important that is for me.

Anyway,  

God is great, 10/10 recommend if you need hope to keep moving forward.

Also, Kele is the best, and I will always be rooting for her ❤️

Until then, folks, see ya when I blog next (which will hopefully be soon because I have a lot of art/ advocacy projects I’m working on).

THANK YOU AGAIN, BE SAFE, AND GOD BLESS!