Thursday, January 27, 2011


Really there is no reason to title this blog "Tumorlicious," since a tumor is probably not too 'licious. Nevertheless, Hi!

I haven't posted in a while. And people (friends, mainly) have been asking me why. Well, it's because I have spent the last two months trying to avoid the subject. Even though I think about it every single day, I have still been avoiding talking about it.

Let's see ... lots of stuff has been going on. I'd like to break it all down in list format. You know how we do.

1. I got a bunch of tests in November, after my doc put me on a watch and wait status.

2. Saw the doc again on December 1. He said, "Wow, you really are dizzy." One of the tests showed that I have only 40% balance function. He ordered me to do some physical therapy to help balance and then said that in March he will do another MRI, and if it (the 'licious tumor) has grown that he is gonna get on the ball and schedule surgery.

3. The surgery will be of the translabyrinthine approach. This procedure provides the best line of sight of the facial nerve and consequently offers the highest success rate of facial nerve preservation for a patient. The downside is that this procedure sacrifices an individual's hearing. It should only be selected when a person has severe hearing loss or the tumor is too large for hearing preservation surgery. Translab is the preferred surgical choice by most doctors when the hearing level is no longer useable. It is also a good choice when a tumor is above 20 mm as, statistically, facial nerve damage increases with large tumors. The entry is behind the ear in which the mastoid bone and some bone in the inner ear is removed.

3b. So, yeah, my inner ear will be removed, rendering me 100% deaf in my left ear. However, my doctor assures me that he can get me approved for the Baha implant which will make me hear again. What? Yep, it's super cool and I will totally be like a bionic woman of sorts.

Except I won't look like this:

Instead, I will look like this:

Not really. Man, that would be a real drag if I looked like that after surgery.

3b. Not only will the inner ear be removed, but the mastoid bone will be removed. And then guess what!?! Doctors will remove a chunk of my belly fat to fill the space where the bone once was and they will put a titanium plate over it and staple up my head. Easy peasy, right? And I plan on taping a note (written in the most beautiful calligraphy) to my belly. And on that note it will say:

Dear Doctors White and Fell: Thank you for taking the time to read this carefully thought-out and planned note. I trust you are doing a good job and not making fun of my belly fat. As you can see, I have plenty of it. Thus, since insurance is covering this procedure, please continue to remove some fat, not just enough to cover the bone replacement in my skull. Surely there are starving kids in Africa or some meat-eating marine life in the Pacific that would like to have a few (hundred) pounds of this belly fat. C'mon, do me this favor, please kind doctors. Also, while you are in there, can you tie my tubes? Again, thanks for treating my body and brain with such care. I owe you one. Love and kisses, Joey

4. Am I still scared? Sure. Am I still avoiding? A little. But the truth is, I have had nearly five months to come to terms with what's going on. I think I'll survive. I hope. If I think about it too much I get really scared. Mainly because I am concerned about finances and who will look after Harry. But I have to rely on knowing that I have good friends. We'll see how good they really are ... when surgery day and recovery time is upon us.

5. Acoustic Neuromas in the media: Well, Dr. House on the prime time show, HOUSE, mentioned acoustic neuromas the other night. I'm telling you, I'm totally making brain tumors cool. I single-handedly made gauchos cool again in 2000 when I came back from Europe. I can totally do the same with brain tumors. You watch! By the time mine is gone, everyone will want one. Veruca Salt will beg her dad for one. Just watch.

5b. Tara Subkoff, fashion designer, had an acoustic neuroma removed. She even had the same type of surgery I am going to have. Harper's Bazaar wrote about it. Because she's famous, and didn't have insurance, all the Hollywood and NYC peeps had a benefit for her. I hope I get a benefit, too. One with lots of beer and pie. I mean, one with lots of sweet and kind supporters.

Anyway, Tara Subkoff had a bit of facial paralysis after her surgery. But it's not too bad.

Here's another picture of her. She's pretty.

6. Gosh, I am forgetting what all I have to talk about. Let's see ... I am on five medications. That's right, five!

7. Oh, GOD, here is the craziest shit ever ... I have an ex-boyfriend who lives in Savannah, Ga., and we are still friends. He's a great friend. But he is totally a tumor spreader. His current girlfriend found out about a month ago that she also has an acoustic neuroma brain tumor. No shit!!!! I shit you not. Seriously, I am not shitting you. Shit! Supposedly only 1 out of 100,000 people in the U.S. have ANs, and he knows TWO! What are the shittin' odds? Shit, I swear my Tourette's normally isn't this bad. Anyway, hers is bigger, much bigger and she is getting surgery next week. I am sure all will go well and she will get through this - especially with the great support Mr. Savannah will give to her. He'll be a great caregiver. She's a lucky tumorlicious-having woman. I digress.

8. Let's see, what has been going on this first month of the new year? Well, I've been sick. Harry's been sick. I've been sick. Harry's been sick. Hung out with the love of my life during the first few days of the month. I've had lots of dinners with Emily. Harry's been sick. I've been sick. Emily has been sick. I've started tai chi. Harry's been sick. I've seen Zach a little. Mom started some sort of radiation-type treatment. She's been sick. I've been sick. I've worked lots. It snowed. I've been sick. JP got new boobies. Harry's been sick. I watched a silly artsy movie called Little Furniture with Emily. Harry turned six. Storm Troopers came to his birthday party. He was sick. Harry threw up in the grocery store. And in my bed. I've been sick. My lips swelled up again due to some allergy. I went to the doctor. That's about it. Let's hope February (the month of love) turns out better.

Love and kisses and tumorliciousnessexpialadocious,