I’m married to a wonderful man named Brendan Quinn. This post is addressed to him.
Hi, baby. I love you so damn much.
Together, we’ve been able to pursue our dreams of owning our own company, publishing games, creating (as yet unfinished) video games, and traveling to all sorts of interesting destinations. You have helped and supported me through some very difficult times, and I’ve helped and supported you, as well.
We’re partners. We’re best friends. We’re very, VERY happily married.
We’re also human beings, which means we’re not always on our best behavior. I think what makes our marriage work so well is that we talk about shit as it comes up. I mean…we have to. Otherwise, it just sits there stinking up the room. So we talk through problems as they arise, and make sure to put the emphasis on how to make it better instead of on who to blame. You’ve helped teach me how to do that better.
Today, we’ve been married five years. It feels like so short a time, and somehow simultaneously, it feels like I’ve known you forever.
Everything I said in my wedding vows still holds true. I just want to tack on a little addendum: I will never, ever stop learning and growing. I’ll keep striving to be better and better—and not just for you, but for myself as well. I know you’ll understand what I mean 🙂
You’re the absolute best, love. I hit the lottery, and I know it. I’ll say it again: I love you so damn much.
It all began with a little toy called The Animator.
Etch A Sketch released The Animator in 1985, and I began seeing commercials for it around my 6th birthday. I fell in love instantly. I begged and begged my parents to get it for me for Christmas. At that time, the price was a little steep for them, but they made it work.
By December of 1985, I had my hands on The Animator, and I began making my first pixel art animations!
Here is a video showing you what The Animator looked and sounded like:
This video isn’t mine… unfortunately, I don’t have my old Etch A Sketch Animator anymore 🙁
Although, honestly, after seeing this video and remembering the noises it made, I’m a little less wistfully reminiscent about it…
These days, I’m using Photoshop for my pixel art pieces and animations. I rekindled my love for pixel art thanks in part to Pixel Art Academy, a game that is being created by the talented Matej “Retro” Jan.
I was lucky enough to stumble onto the Kickstarter for Pixel Art Academy, and even luckier to learn that there was a whole community eager to create, consume, and love pixel art. I still have SO MUCH to learn, but that just motivates me more.
It’s been way, way too long since I’ve checked in!
I’ve suddenly become very busy, and I’m trying to balance my time with my recovery. Working out and cooking have made their way back into my life, which is super fun and feels awesome. I’ve also got some new design projects! All in all, things are going splendidly. I just need to figure out how to keep everything in balance, and allow time for my own art projects and blog writing.
There are a couple of blogs bouncing around in my head. I’ve been writing them mentally while driving, showering, etc… you know how it is. They’ll make their way here soon 🙂
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.
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.
(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:
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.
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.
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.
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).
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!
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.
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.