Today, after calling my ENT (the guy who currently has my life in his hands) several times to get some sort of answers, his nurse called me back. I last saw him on November 1 when he told me that he was putting me in a "watch and wait status" and ordered three zillion tests. I have been calling obsessively for more than two weeks and just today got a response. Their excuse? Well, St. Francis health system has recently converted to a new computerized system and he is just now reading the results.
What are the results you ask?
Well, my ECOG (electrochochleography) test came back normal. That means I don't have Meniere's Disease. I didn't think I did.
The ABR (auditory brainstem response) test came back abnormal. Duh. Really? You mean, I can't hear? This is NOT news to me. I could have saved my insurance company an ass load of money had they just taken my word for it. I am pretty much deaf in the left ear. I didn't need a stupid test to prove it. Nevertheless, it did.
The ENG (Electronystagmogram) test came back abnormal. This was the test that had me wearing a pair of sensitive camera goggles for two hours while they did a battery of tests. What did it prove? That I'm dizzy and tinnitus is present. Again, duh!
I had several more tests, and I guess the nurse didn't figure it was important enough to tell me those results. Nevertheless, she said that the doc wants to see me on Monday to go over treatment options. What does this mean? Does this mean that now he sees that the tumor is affecting me he wants to slice my head open and remove it? WTF?! I am in panic mode again. I mean, I've been in the watch and wait mode for a month now and have sorta forgotten about the surgical option.
Who really knows what it means. It probably means that I am going to pay a co-payment and my insurance will pay shit tons of money for the ENT to once again inform me that I have a brain tumor and that I am indeed dizzy and have lost my hearing. I swear to Allah if he says that to me again I will stroke out and go mental on him.
I am so ready to stop thinking about all of this.
But more importantly, I am at a point where I don't even care about the tumor anymore, I am still mourning my hearing loss.
I spent some time with friends this past week. Friends who know about the tumor - friends who know about my hearing loss. But I still had to constantly remind them. It's no different at work or amongst friends and family I see on a daily basis.
Guess what guys!!!! I can't fucking hear! So, please be cognizant and remember it and take the measures to ensure that I can hear you from my good ear (the right one). I think the only person who really remembers and takes the steps to assist me is Emily Elkins. She always remembers to sit on my right side.
Just so you know, friends, I am going to start ignoring you if I can't hear you. It's easier than saying, "huh? what? pardon me? excuse me? what did you say?"
On a positive note ... I talked to my insurance company at length yesterday and they said that if my doctor sends them letters and documentation on my hearing loss that I may get approved for the $30,000 Baha Ear Implant. That's a wicked, surgically implanted thing that looks like a snap that is put into the bone behind my ear and somehow tricks my bad ear into hearing. It's super sci-fi shit! And I want it.
It isn't pretty, so I will have to grow out my hair. And it's not terribly sexy. I mean, the first man who runs his fingers through my hair only to get them stuck on this big gnarly box snapped to my skull is going to run like the wind. Well, hopefully not. But I probably would. Or I would beg to unsnap it and explore the crazy device. Whatever. I just want to hear again from my left ear. After all, I have to work for the next 35+ years, I want to be able to hear what people are saying to me. And, I work in the music industry. I HAVE to be able to hear.
I'm whining, I know. I'll stop. Because, believe it or not, I am in really fantastic spirits and have been. Even during the bad days I realize that things aren't as bad as they could be. I am always very thankful for what I have. I hope I always stay that way.
Ancora Imparo.
I know a really good distraction for you this weekend. And you can ignore me all you want. And I'll carry around big cue cards and a big marker to write on in case I have to say something really important like, "THE HOUSE IS ON FIRE."
ReplyDeleteLove you.