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.