So I’ve Been Gone…

fine
You know what this is.

Yep. You’ve heard it here first, folks.

I’ve been gone for awhile.

Why, you may ask?

Brain surgery! Emergency brain surgery. As a consequence of my Von Hippel Lindau. If you don’t know what that is, please visit this website! If you don’t feel like clicking, let me catch you up really quick: VHL is a rare genetic disorder that allows tumors and cysts to grow all over my body, especially in oxygen-rich places like my brain, spine, eyes, and kidneys.

I currently have cysts and tumors in my kidneys, my spine, my pancreas, my right eye, and most importantly for this post, my brain.

I have ten cysts to be exact, lurking around in my cerebellum. Three of them have been taken out as of December 6th, 2019.

Since I don’t want to make this post 900 pages long, let me make a very long story short.

I went in for a routine MRI on the Monday before the 6th. November 25th, 2019. I went in with no idea I had a problem, just that I had some headaches in the back of my head when I bent down too quickly. It would happen mostly at work, but I’d ignore it, thinking my doctors would fix it when they had the chance.

And fix it they did.

After my MRI, I was scheduled to go home. So I went home. On the way back (it takes two hours to get from my house to the hospital I go to), my radiation oncologist called. She wanted me to come back. Immediately. So, I rushed home, and my mom and I went back to the ER, where I was admitted to the hospital.

I was also put on steroids. Three times a day for a week. I stayed in the hospital for a couple of days, returning home with the promise of more steroids and another doctor’s appointment the following Monday, December 2nd.

It was during that December 2nd appointment that I found out that I was having surgery.

According to my doctor, my brain was swelling to the point where it was pushing into the back of my skull, into the right side of my spine. This is where I’ve had brain surgery before. Twice. It’s also where three of the tumors were, where my spinal fluid threatened to sicken me before I even knew what hit me.

My doctor, a neurologist I’ve seen for years, explained that my scan was bad. The swelling was enormous, a likely product of the Gamma Knife (linked!) procedures I’ve had over the years. If we didn’t do something about it now, it’d just get worse. I’d get sicker. A shunt wouldn’t do the trick. Surgery was my only option.

And it was an intense one.

Sparing the gory details, my doctor said that he may or may not have to permanently take out part of my skull. He’d definitely have to take out a piece of my brain. A whole piece of my cerebellum, gone. I wasn’t nervous. I didn’t feel much of anything but complete determination to have this done. My mother and step-father were terrified, as was everyone else, but honestly? I was numb. I didn’t care. I just wanted to do it.

The surgery was scheduled for December 6th. I spent a week on a high dose of steroids to get the swelling down as much as possible. I watched my favorite television shows, scrolled through YouTube, buckled down and got my Chinese History class done before the semester wrapped up. the week after. I did everything I needed to do.

And then I went to the hospital.

I had surgery on Friday. It took eight hours and it went better than I ever could have expected. While in surgery, my brain magically “fixed” itself. The swelling had gone down so much from the steroids that the complete skull removal wasn’t necessary. Three tumors were still taken out and part of my cerebellum is gone, but aside from that, I’m doing well.

Walking is a bit of a challenge, but I’m doing it.

I can function in every other capacity aside from my coordination. I get exhausted easily, and the incision itches, but my hair is already growing back.

I’m even starting on another novel as I write this. One about VHL, since I know I’m the only person who can truly tell my story.

Don’t worry about me, folks. I’m fine.

And I’ll be back very, very soon/

Yours,
Lex

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