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Tumor Update

*Content Warning—This post may contain the following triggers: descriptions of surgical techniques and physical symptoms*

Yesterday, I met my brain surgeon. He’s a badass who removes about 300 pituitary tumors per year, and he’s also super nice. His name is Dr. Ferreira.

Dr. Ferreira doesn’t fuck around, which is awesome. I want the straight facts and he gives them to me.

The first thing I learned yesterday is that I do not have an adenoma. I have an epidermoid cyst, a relatively rare type of tumor that only accounts for about 1% of all brain tumors.

I also learned that I have an aneurysm, which will make it less safe to have the tumor removed through my nasal cavity. Instead, the surgeon will remove a small part of my skull and do a “keyhole” craniotomy.

Don’t watch this if you’re squeamish:

Here’s the wonderful news: the type of tumor I have may be a major cause of my chronic neck and back pain.

Do you know what that means??? Getting rid of the epidermoid cyst might also rid my body of its chronic meningitis! My tumor “flakes,” and those flakes are released into the spinal fluid and meninges that surround my spine and skull, causing chronic meningitis—headaches, neck stiffness, vertigo, and other symptoms. (In case you’re wondering, none of this is communicable; I can’t infect you ^_^). This tumor is congenital. It’s probably been growing slowly my entire life.

Here’s the not-so-great news: Epidermoid cysts are difficult to remove “cleanly.” Because they tend to flake, it can be difficult to get them all in one surgery. Dr. Ferreira said he has seen patients that need multiple surgeries over their lifetimes, but I’ll stay positive and hope that I’ll only need a few surgeries (or maybe even one!).

So, what’s the takeaway? Bright, shiny hope!
The key is to temper expectations while hoping for the best! xoxo

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The difference between pride and independence

I am no longer allowed to drive.

If you’ve read my previous blog post about vision loss, this probably doesn’t come as any surprise. In addition to the vision issues, I am getting more and more frequent dizzy spells. They come upon me when I look to the side, so if anything, they have made it even less safe for me to drive.

Now I have to rely on other people for so many things. A friend took me to a doctor’s appointment today, and my sister is taking me to another appointment tomorrow. I can’t go to the store. I can’t meet a friend for coffee. I can’t go to Fuse. I can’t do anything. Not by myself, anyway.

For the first time, I understand why elderly people don’t want to give up driving, even when they know they should. It’s not the driving they’re giving up…it’s the ability to do anything alone and without comment.

Think about it: If you needed to ask for rides everywhere you went, how many more people in your life would know all of your private business?? I don’t want everyone in my family to know what doctors I’m going to all of the time. Any sense of modesty or privacy has disintegrated between us.

So, here I am, feeling sorry for myself, when I realize that what’s hitting me hardest is my own pride.

There is something to be said for letting go of pride and asking the people in your life for help that you genuinely need. Yes, there is a loss of independence, but there is also a loss of pride, which is not a bad thing.

I am going to use this whole experience as a chance to grow. The things that I’m struggling with can make me a better person! I would be a fool to let this chance pass me by!

It’s been a while, but when I read Amanda Palmer’s The Art of Asking, I knew that asking for help was something I needed to work on. A LOT. Well, here’s my chance! I’m going to get tons of practice asking for help!

That being said, please know, dear friends, that “no” is always an acceptable answer : )

 

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It started with an eye exam

My husband, Brendan, got vision insurance, so I decided to get an eye exam.

During the course of the exam, it became clear that I needed eye therapy to help me focus better. My eye therapist quickly realized that there was something wrong with my vision. Blind spots.

The optometrist did some extensive field of vision testing, and they saw that I had lost almost half of my vision in each eye.

Now, you might wonder how I didn’t notice this before. To be honest, there were signs. People often startled me when coming up behind me, since I had lost most of my peripheral vision. But you have to understand…it happened so slowly, over a lot of time. I adjusted. Brains do that.

Next came an MRI of my brain. I knew they had found something when I saw measurements on the initial report. They had found something in my brain and they were measuring its size.

So… I have a brain tumor. I do. And it’s okay.

I am a very lucky person. Here are a few of the reasons why:

  • My wonderful friend Erin had a similar tumor removed just last week. Her insight and support has meant the world to me.
  • My father, who is a doctor, was able to let me know right away that the tumor appears to be benign. Phew!
  • I’m not going blind!!!
  • I don’t have MS!!!
  • A surgeon who is an expert in pituitary tumors (mine is sitting on the optic chiasm, which accounts for my vision loss, which is right where the pituitary lives) is right here in Washington State.
  • I have an amazing husband, which makes everything better.

Sure, I sometimes feel scared, or sad, or angry. In fact, today I’m dealing with some pretty angry feelings. But mostly, I’m pretty optimistic! The outlook is good 🙂

If you would like more information about pituitary tumors, visit:
http://www.uwmedicine.org/health-library/pages/pituitary-tumor.aspx

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Pain

Originally written on 5/2/15

I’ve always had pain.

For as long as I can remember, I would wake up crying with leg aches, go home with stomach aches, and have episodes of severe light and sound sensitivity (which I later learned were migraines) that made me curl up in my closet or the bathroom, the only lightless rooms in the house. I learned to be ashamed of my pain because it inconvenienced others. I learned to shut out a good portion of it because it was the only way I could function.

In my teenage years I wasn’t exactly careful with my body, so I’m sure I did some harm, but who can say they didn’t? I traveled and rode motorcycles on bumpy roads and went sledding and snowboarding and was in car wrecks (not me driving) and all sorts of things that probably made my body issues worse.

I’m in my 30s now, and it’s gotten worse and worse. I take anti-seizure medication and pain medication and use a tens unit and get massages and use a traction machine. None of it is enough anymore. Almost every day, I make half-hearted plans and know that if I’m lucky I can accomplish some fraction of what I want to get done. Sometimes I lose a whole day to the pain, and sometimes just part of a day.

My husband is wonderful. About everything. About the fact that he takes on well over half of the work we should be sharing. About my inability to be physically intimate most of the time because if I stop ignoring my body for two seconds I will feel all of the pain that I’ve worked so hard to shut away. I can’t stand it, and I tell him that he deserves a whole wife… not someone like me (who feels like half of a wife on my best days), someone better. He says there is no one better.

This year we got insurance (thanks, Obama).

I got an MRI for the first time, and the report I got back was complicated and indecipherable. Arthritis, degenerated disks, herniated disks… all were present and accounted for. My pain management specialist (which is apparently a thing) said to ignore everything but the bulging disk in my neck for now. That was the biggest problem. He showed me a model that looked like this:

That’s what’s causing most of the pain in my neck, shoulders, head, arms, and even my hips, legs, and feet. Isn’t that crazy?

Also, my body—which has proven to be grossly unhelpful—has developed a bunch of myofascial pain over the years. When you have a problem, your body tries to compensate and stabilize and basically does a bunch of shit that only makes the symptoms worse, kind of like allergies.

So now I’m getting trigger point injections for the myofascial shit, and I’m trying to get permission from my insurance company to get the treatment I really need. Want to know what it is? Are you ready for this?

I’m getting Botox shot into my muscles so my nerves stop freaking out. For real… Botox.

The fucked up part is that I have to just keep suffering until Group Health gets its shit together. Here I am having had migraines and pain for years, and the insurance company wants me to jump through a bunch of hoops before I can get the treatment that might make me feel human again.

The stupidest thing about the whole situation is that it would cost Group Health a tiny fraction of what they’re paying now to just give me the fucking treatment. Instead, they’re paying for me to see three different doctors (dumb) who all say the same thing anyway (dumb!) and give me little treatments that help for maybe a day or two if I’m lucky (DUMB!). It doesn’t make a bit of sense.

Oh, I’m also waiting for them to approve a different seizure medication that will do what my current seizure meds do, but better, and without as many side effects. I’m on month three of waiting for that to happen.

So that’s what’s up. If you see me around with a tens unit strapped to my neck, or standing up and stretching every few minutes, or with earplugs in, or leaving functions early, now you know why.

I feel like I should end this tirade my saying that I’m okay. I’ll get through it. Some days I don’t feel that way, but mostly I have hope that things WILL get better.