Here I am on the other side

This will hopefully be the last tumor-related post for a while. I’ve given this enough of my time and energy.

The egg-sized brain tumor is gone. (Please excuse the extremely lazy animation…I’m really weak, bros.)

Recovery ended up being much longer than anticipated—the average stay is four days, but I was in the hospital almost two weeks. Complications… nothing that is too serious now. Everything is back under control somewhat. Let me just say that I had NO idea how important electrolyte balance was.

Here, I mainly want to recognize some people. First of all, Brendan Quinn. That dude can HANG. He slept on these horrible chairs the whole time I was in the hospital, just so I wouldn’t be alone. Even though my meds are making me into a swollen blimp person, he somehow makes me still feel attractive. He held my hand during procedures, got me water, called nurses, ordered me food—he did everything I needed. I don’t know how I could get through this without him.

I also want to recognize my mom and dad. Mom has been hanging out at the house with me, helping me with laundry, dishes, food…pretty much anything. She’s been AMAZING. My dad has helped me understand all of the medical stuff that’s going on with me, and helping Brendan with stuff around the house, too.

Camdon Wright (along with his wife and kids) sent us tons of videos while we were at the hospital! You have no idea how boring recovery is. Nobody warns you about that. It’s really depressing to not be allowed to sit up or anything. I couldn’t even read or play mobile games for most of my recovery, because I couldn’t focus on anything. The videos were hilarious and awesome.

Erin Anacker has been a constant inspiration and help to me as well. It’s been so nice to be able to talk to someone who has been through very similar circumstances. Erin has helped me by giving me a special pillow, and like, TONS of advice.

Our friends Becky and Damon put together a bunch of easy recipes that we could make in a rice cooker so we wouldn’t go broke eating out! We still haven’t even gotten through it all!

There are more. I know you and I acknowledge you, but I’m getting too tired to write. Please know that I appreciate you. I love you.

Thank you.

 

Denial overturned?!?

Well, my friends, it seems like all of the blood, sweat, and tears of the last two months has finally paid off! Without your support, I think I would have given up by now.

As I was gathering my notes to try, yet again, to get my appeal expedited (Kaiser had just sent a letter saying my appeal could not be expedited because waiting would not “seriously jeopardize [my] health or ability to regain maximum function,” despite the fact that two neurosurgeons—including Kaiser’s own appointed surgeon—said that delaying surgery would put me “at risk for catastrophic vision loss”), I was informed that my appeal had gone through. The woman on the phone said that Kaiser’s previous denial had been overturned.

I broke down right there, and got off the phone as soon as I extracted a promise from the woman to send me the approval letter immediately. What followed I can only describe as some sort of howl. It was a primal noise of frustration and maybe grief. (I have been looking online for a sound I could post here to give you some idea of what I mean, but nothing was right).

All of the terrible frustration and helplessness I’ve felt for the past two months just came pouring out of me, and it was so loud! I think I scared my poor dog to death.

Afterward, I felt…deflated, or something. Then I felt guilty, because I wasn’t overjoyed like I thought I should be. But I made a promise to let myself feel whatever feelings come up, no matter what.

Right now, I feel so happy. So grateful. I’m still wary…I’ve only been officially granted authorization for office visits to Dr. Ferreira, but I have hope that they will also grant surgery. Thank you again, my beautiful friends and family.

How to talk to people about things

(please enjoy the elephant drawing a did ages ago…sorry for being lazy)

You don’t know how to talk to me. You don’t know what to say.

I get it. I really, really get it.

Long ago, when I lived in Eugene, I was having lunch at a restaurant in my neighborhood when a friend I hadn’t seen for a while popped in. We said hello and hugged, and he sat next to me. When I asked him where he’d been, he said, “My father died.”

I gaped. I stumbled around for something to say. I literally said, “I don’t know what to say. I’m sorry.” My friend seemed unperturbed by my behavior, but all I could think was, I hope he leaves. The situation was so uncomfortable for me that I just wanted out.

That was years ago, and I’ve since learned a little about how to talk to people in crisis and in heavy emotional situations. Last year, I lost both of my grandfathers within two weeks of each other, and my uncle a couple of months later. It was a time fraught with difficult emotions—grief and loss, especially. I found myself having many, many conversations around death, and I was both on the receiving end and the giving end of sympathy from others.

At that time, I was able to empathize, and instead of offering platitudes, I let myself sit in the uncomfortable feelings of anger and sadness, and I even allowed myself to feel all the other weird, complex feelings that didn’t seem rational.

So here we are. I have a brain tumor. I’m getting it taken out on June 23rd. And I’m fighting tooth and nail with the insurance company that doesn’t want to pay for it.

What the hell can you say?

I’ve been reading a book called Option B: Facing Adversity, Building Resilience, and Finding Joy. The authors, Sheryl Sandberg and Adam Grant, talk a lot about how others can approach the “elephant” in the room, and some of the myths that friends and family have to get past in order to talk to you about tragic events in your life. I’m going to paraphrase ideas from the book and add my own takes.

Obstacles to Conversation:

  1. You think you’re not allowed to talk about your own problems. Well stop it! I know my friendships are largely one-sided right now, but I want to restore the balance between us. I care about you and I want to help you through your troubles, too.

  2. You don’t know what to say or do. Call me up or text me and ask if you can bring over a coffee. Ask if I need a ride to the store. Let me know you’re in the area and ask if it’s a good time for a visit. More specific is better…if you just ask if there is anything I need, it will be tougher for me to answer you.

  3. You think talking about the brain tumor will make things worse. Nope. If I don’t feel like talking about it, I’ll let you know and we can talk about other things. Please don’t be afraid to bring it up.

  4. You’re afraid of saying the wrong thing. Okay, you might. But it won’t be the end of the world. Emily McDowell Studio has a line of empathy cards that are fantastic examples of what to say to people going through serious shit. One of my favorites says: “When life gives you lemons, I won’t tell you a story about my cousin’s friend who died of lemons.” (Yes, someone I know actually went into a diatribe about how many people die in surgery when I said I was having brain surgery).

    Check out more empathy cards at
    https://emilymcdowell.com/collections/empathy-cards

That’s pretty much it for my advice about how to talk to me. If you want to be extra nice, you can try to convince me I’m not a huge burden right now. I’m trying to convince myself of that, but I could use a little teamwork. And if you see me slipping into self-pity mode, just remind me of how many amazing people have shown their support through rides, phone calls, and GoFundMe pledges. I don’t need pity, and I certainly don’t need it from myself. I’m so freakin’ lucky!  ; )

If you’ve actually read this far, thank you! Thank you so much for caring about me enough to read this enormous blog post. Even for the peeps not reading this, I love you all! Thank you for being there for me!

Appeal sent. Now what?

TL;DR: My insurance company is still being awful. I turned in an appeal that has over 200 pages of supporting documents. Hopefully they’ll grant the appeal and I can get on with my life!

Here’s a rundown of everything that’s been happening:

My insurance company doesn’t want me to have my tumor removed by Dr. Ferreira, who is the foremost expert in Washington (and one of the top in the entire United States) in pituitary tumors. He is literally listed on their own website as an in-network doctor—a fact that I had to prove to the case manager the insurance company assigned me to, since he didn’t believe me—and my neurologist, Dr. Zhang, specifically requested that Dr. Ferreira be my neurosurgeon.

Here’s Dr. Zhang’s letter so you can see it. She’s an amazing woman who is fighting for me.

Instead, the insurance company wants me to use a neurosurgeon named Dr. Azeem at the facility they own and operate. I went to see him and learned that he wanted to do an open craniotomy. For those of you following along thus far, the craniotomy Dr. Azeem wants to do would be much bigger than the “keyhole” craniotomy I would have had done if I had had an aneurysm. Dr. Azeem would cut from the center of my hairline to my ear and remove a large amount of skull.

Dr. Azeem’s plan would be the most invasive approach possible, whereas Dr. Ferreira’s plan would be the least invasive. Since the transnasal surgery is about half the cost the keyhole craniotomy would have been, I have to think it would be less expensive still than the open craniotomy!

Plus, the recovery for an open craniotomy is enormous compared to that of the transnasal resection. Why are they doing this???

Add to that the fact that the longer they make me wait for surgery, the more likely it is that I will lose more of my vision and not recover the vision I’ve already lost. This has been confirmed by both neurosurgeons.

I am at my limit right now. My level of frustration is such that any little thing makes me cry. Not sad tears, more like…rage tears. I am full to bursting. I’ve had it up to here. (Add your own relevant platitudes).

My appeals have been filed. I opened a case with the Office of the Insurance Commissioner of Washington State. Now all I have to do is wait……………………

Being done with my appeal is more agonizing than I was prepared for. Being busy was hard, but it was keeping me from drowning in all of the anger and dread that I feel. I’m not up for pixeling today. I’ll snap out of this funk soon.

Promise.

Hooray for THE MIGHTY NOSE!

Woo hoo!!!

No aneurysm! No skull drilling! We’re totes doing the surgery through the nose! And, as it turns out, I’m no longer paying through the nose (as much)… the whole kit and kaboodle will only cost $56,000, so like, half of the original estimate. Nothing but good news today! 😀

The surgery is called an endonasal transtubercular resection. I strongly suggest that you do not Google that or watch any videos of it. But hey… good news. Good, good news.

One more thing. A quote from Jordan Chaney‘s book Wolf, which is kind of my mantra right now:

It’s about choosing to love when the invitations for hate are overflowing and abundant. It’s about finding the strength and courage to be gentle and to be kind and to smile when right outside your door you’re tempted to resentful, cold, and apathetic.

That’s all for now. <3

Tumor Update

*Trigger 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

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 : )

 

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

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.