Tuesday, September 14, 2010

Ancora Imparo

Several years ago after breaking up with my baby daddy, my aunt Julie told me about the phrase Ancora Imparo. She'd read it in a book. It is said that when Michelangelo Buonarroti was on his death bed he said, "Ancora Imparo," which means, I'm still learning - or some variation thereof. The phrase has stuck with me. I've used it. I believe it.

Over the past five years I've learned a lot. About myself. About people. About life. And yet, I am still learning.

I've been going about my business, meeting and enjoying new friends, loving and watching my son grow up, working, enjoying life, being horrible to my body. And yet, I am still learning.

I learned something new recently. Something that would shake me to the core. Something that would bring tears to my eyes in an instance. And yet, I am still learning.

Once I heard Johnny Carson say that you can only use a joke or anecdote three times before it gets stale and no longer funny, so I will stop with the ancora imparo shit. Just know that I believe and live it.

On September 1, nearly two weeks ago, I had an appointment with an otolaryngologist. They checked my hearing, which has been failing in my left ear since earlier this year. The patterns were "unusual," and so I then began a battery of tests, including a CT scan and an MRI.

When it was all over I was diagnosed with an Acoustic Neuroma — a tumor that hangs out on the eighth cranial nerve. Yep ... a brain tumor. It's also called a vestibular schwannoma. I might change my blog name to My My My My Schwannoma and then write alternative lyrics to The Knack's brilliant song, My Sharona.

Here is a picture of my tumor. This is from a "slice" of the MRI and shows my head and brain and insides from the bottom of my face up - so it's like the photo is taken from under my face looking up. Oh, so confusing. The tumor is on the left side, but in the photo you see it on the right side. It looks like a little candy corn. It very well might be a candy corn from years past. I've been pretty drunk at several Halloween parties in previous years so who knows what could have happened.



One of my best friends pointed out that in the top right of the shot, near the top of what I think is my left eye socket (remember, it'll be on our right in the photo), there is a sideways image of Jesus. But then we both agreed that it's not Jesus at all, but rather, it's 70s Eric Clapton.

I digress.

So, for two weeks I have been spazzing out, crying, whining, worrying, and basically freaking out.

The doc says I have to have BRAIN SURGERY!!!!!! See, I'm freaking out.

Here's the good news ... although Acoustic Neuromas are VERY rare (1 in 100,000 people are diagnosed every year in the U.S.), the prognosis is good. It's NOT cancer, it's a benign tumor. Treatment IS available. And the best news of all, I have an amazing support system. Seriously, AMAZING!

So, what's the bad news? Well, aside from my symptoms, which should have all added up way before now (dizziness, falling down a lot, headaches and the hearing problems), there are lots of scary things that make me nervous.

I'll break it down in list format:

1. I am a chicken. I hate the thought of having my skull cut open and my delicate brain and insides poked and cut. The scar will be wicked! I might get a tattoo on my skull.

Here is a photo of a chick's head who had the exact same surgery as I will have:


(Here is a positive ... the doctors take a chunk of fat from my tummy to close up the wound on my head. Win!)

2. I am scared of dying. I've always been scared of death. My death, people I love dying, people I don't know dying. I am just scared of it. My mom thinks it is because I don't have faith in God. She's wrong. I just don't like it.

I'm scared to leave my son with his father, who has proven to be an alcoholic. But that's another blog post, and perhaps another blog all together.

3. Work. I love work. I don't want to have to be off work for a long time. I can't be off work for a long time. I have three weeks. Yes, three weeks of paid leave. I may have four by the time surgery rolls around. But as of right now I have three weeks. Hopefully my employers will let me telecommute and work from home. Because I have lots of work to do and because I don't want a loss of income.

$. Which brings me to loss of income. Shit! Although I don't live frugally, I do live pay check to pay check usually. And I am just talking about my day to day living expenses. How much does brain surgery cost anyway? My insurance pays 80%. So, I will be paying 20%. Ouch! Between student loans and brain surgery costs, I will be paying out my ass for the rest of my life. Which they (people who want my money) could literally take it out of my ass and I wouldn't mind, much like the doctors do when closing up the wound in my head. Close up my debt with my ass fat, you jerks! That would be a total win.

I digress. Again.

5. Facial paralysis. Yes, chances are that after I have surgery I will have some facial paralysis. GD, my face and my brain are my two best assets and they are both in jeopardy right now. All I can say is FUCK!

I'm sure in the weeks ahead I will have much more to say. I am sure I will even repeat myself frequently. I mean, I have a brain tumor after all, my memory surely is affected.

Here's the thing ... in the past I have always written during times of trouble in my life. It's always helped. This will prove to be no different.

And I want to provide a positive, humorous look at this journey for people like me who are finding out they are in the same boat. I google Acoustic Neuroma and 90% of the people talking about it are negative. I have to be a positive force.

I am allowing myself about another week to fully sack up and start dealing with this. I have to. I am a positive person by nature and I have a son to live for, friends to annoy and a magazine to publish. I can't be a quitter and I can't die.

I hope you will join me on this journey. As my friend, JP, says, "This is just a bump in the road." Fingers crossed that she is right.

Here are some interesting links I found:

Here is a mom blogging about her daughter's AN surgery. It's a fun read. However, I would be pissed if my mom left the hospital as often as this one does - off enjoying yummy polish food and painting the town. I'm selfish and mean like that. I'm also an exaggerator.

Blog about an AN chick like me. Well, not just like me, but we both have (had) ANs.

Here is another blog of a woman's account. It's good for me to read these, I think. I know everyone's situation is different.

Deb's AN Adventure

This guy just cracks me up ... and his facial paralysis doesn't seem to be horrible, like I am expecting mine to be.

Funny facial neuroma guy.


And finally, I forgot to mention that my brain tumor is 9mm x 4mm which is big enough for the doctors to want to remove rather than watch and wait.

The next blog topic might be titled, "How will I ever find a husband with a pirate patch and facial paralysis."

Until then ... thanks for reading.

14 comments:

  1. why dont you mention your fear of turning into 'GOLLUM" that had me giggling all last week.

    i will wipe drool off of your chin if i need to, but im wearing a glove on the rag hand. no offense.

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  2. Zachy, I imagined that I would turn into Gollum when I thought I had to shave my entire head post op and live on a feeding tube (ultimately dropping 600 pounds and looking frail) and also have the drooping facial paralysis. Gah, I'm going to be a fucking knock out after this surgery.

    You are so sweet to offer to wipe my drool. I'm glad you are my friend. And you know you like my drool on your hand.

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  3. I'm going to buy you the most awesome veil ever. You could end up being the dream girl in some sheik's harem. for real.

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  4. Ohhhh, a veil, huh? I hadn't thought of a veil. Wait, didn't the elephant man wear a veil? Not funny!

    But sorta funny.

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  5. Joey. I've been thinking about you all week...no joke. But I had no idea! *Big breath...no tears*. I want drinks with you ASAP! And PIXIES!

    On another note, I'm buying Maddox a bunk bed. Maddox has already said "I'll let Harrison have the top bunk because that's what best friends do".

    LOVE YOU!

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  6. Joey, j'adore. You are awesome. I know you will rock this with the grace and style I love.

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  7. Joey -- I'm very sorry you have to make this journey but I look forward to making it with you. There's no doubt your humor will be a huge force and will help you and others, but you're also allowed a pity party every so often.

    And, you're soooo right -- stay AWAY from the negative people! You're already way ahead of the game. Not a lot of people have friends volunteering to wipe drool.

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  8. Oh, and one more thing -- if I had to come up with 75 adjectives to describe you, nerdy would never make the list.

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  9. You are a force of nature, Joey; you always have been, at least for more than 20 years since I first met you! NOTHING could stop or change that: not surgery, not side effects, not follow-up. You'll turn this into a life-affirming experience, and you and Harrison will have an even stronger connection as he grows from watching you.

    You are not going to die---at least not from this! But I want to encourage you to remember that death is natural and nothing to be afraid of. Look at William Cullen Bryant's "Thanatopsis" when you want to remember that all of life is good, and death is a part of that. It doesn't need to be feared any more than getting wonderful sleep (sort of Bryant's point there).

    Honey, you write your heart out; it's good medicine. Think deeply and quietly, love as generously as you always have, breathe good full breaths, and take everything in. You'll be amazed at how your focus on the world is honed sharp as a razor. Take that into your Joeyness and love it.

    Be well, and be at peace. I'll be following your blog and sending many, many good thoughts your way.

    <3

    Cathy

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  10. I'm optimistic for a full recovery. From what I've read, facial paralysis is "uncommon" but the risk is related to the size and yours appears very small (less than 1cm in its largest dimension). In your list terms, I understand #1, am not worried about #2 at all, and with #5 there is a slight risk but I think you've got a better shot than most.

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  11. Imma be with you every step of the way. I know that you're fond of believing that everything happens for a reason, and this ordeal is no exception to that. 143xxoo

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  12. Nerdy would definitely be on my list.

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  13. Whoa! I finally got a shout out in Joey world?! Woo Hoo!!! I'm so glad to see that you are taking heed of my advice to never EVER lose your sense of humour! Tho I still insist on calling you Pong (shout out Sherri's exageration!)I do have to admit that "M M M My Schwannoma" is BRILLIANT and I will sing it loud and proud for you! Seriously tho, there are positives (lots of attention, people waiting on you, an excuse to do NOTHING, a super cool battle scar, and of course, tummy fat serving a super useful purpose!) and there are negatives (fear, pain, a brief bad haircut, annoying family members freaking out about it (Shout out Sherri & Grandpa!), income reversal and fear times a million) but in the end you and I both know that the abilities of those of us descended from the Duncan branch of Amazon women have astronmically amazing abilities to overcome even the most extremely shitty obstacles life thows at us. (How's that for supefluous adjective use?!) Also, always know that I Love you and I promise to be there for you to point and laugh, watch your hair grow back, wipe the drool off your chin, re-teach you how to speak if need be, feed you with an airplane spoon, make sure your docs are behaving appropriately, cook you comfort food ... and anything else you need me to do. I draw the line however at dipaer changing or bad reality tv watching. ;-)

    Bottom line: I'm here Joey. I always have been. All you have to do is ask. I love you more than you can possibly imagine and I always will. No matter what.

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  14. Jooge, that made me cry.

    All your comments did.

    Thank you all for the support. I really do love you all completely.

    xo

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