What Did You Say?

I'm grieving.

I'm grieving the loss of my hearing.

Although I am remaining very positive about my present state and my future, I can't help but grieve something that I have already lost. And I can't be positive that I will regain any of my hearing.

It's a sad process. Losing your hearing.

But it's gone. There isn't much I can do about it. I think I might be able to find some comfort in getting a hearing aid after my surgery, but the sadness is still present.

I started really noticing my hearing loss at the first of the year. I would slam my phone down and cuss it out - blaming the stupid iPhone, rather than thinking it was my hearing.

In May I was out to dinner with a bunch of friends and I was so frustrated because I couldn't hear what everyone was saying, so I left the dinner and went home and cried. That's when I knew something was wrong.

I like to be the center of attention. And that isn't easy to do when I can't hear what everyone is talking about.

Saying "huh" all the time gets annoying - even to me. So, I have found that I have been saying, "What did you say?"

It has also come to my attention that I have to remind my friends and family that I can't hear from my left ear and to please speak in my right ear. It's heartbreaking, even though I never let it show.

I never thought I would have to say, "Excuse me, I can't hear you, can you please speak into my right ear." Old people have to say that ... not vibrant 38-year-olds.

But here I am bitching again, when things in my life could be much worse. I could lose my hearing in both ears. I could have been born deaf. I have a lot to be thankful for.

But I want to have a pity party right now. I am sad. I can't hear out of my left ear. I can hear noise, but I can't make out speech.

Friday night I took Harry to see his favorite band of all time, Muse! It was a great time. I found myself plugging up my right ear (my good ear) to see what I could hear from my bad ear. I could hear noise and sound, but couldn't make out what that noise and sound was exactly. It was very strange.

I'm sad, goddammit! I want to hear again. I want to talk on the phone using my left ear.

You know, my left ankle is jacked up, too. I have plates and pins and screws in it. Forever. I want to bitch about that, too. But I won't.

I am lucky. I have it good. I have the use of my limbs, my mind, my heart. I am lucky.

I've decided that I want to get a landline. I am nervous to only speak on my cell phone, as I really have a sneaking suspicion that my acoustic neuroma was caused by radiation from my cell phone.

I want this phone from ebay. Or one like it.

I like the color pink.

Thank God I still have my eyesight.

I am lucky!

How Did That Tic Tac Get There?

So far on this short journey I have discovered who loves me - I mean, those who truly love and care about me. A lot of you do. I really think I am probably one of the luckiest people alive to have so many loved ones. Thank you.

So, one of my dear loved ones, Bruce, sent me a picture text message on Monday that said: "Your neuroma is smaller than a tic tac."

Since I told Bruce about my brain tumor, he has spent countless hours researching my schwannoma. He has been so positive about everything and it has really been helpful. I've known Bruce for about a year and I've discovered that he is constantly seeking wisdom - especially about faith issues. Well, he has a lot of faith in me and my survival and he has faith that I will get through this. And for that, I am thankful. Thank you, Bruce - I appreciate your positive energy and efforts to keep me smiling.

I'm still constantly thinking about my tumor (I also refer to it as CiCi [short for candy corn]) and how it is affecting me. My symptoms have become more noticeable now that I know it's there. Tinnitus, dizziness, loss of hearing and headaches. I seem to be more tired than usual, but that's probably stress.

But what keeps me up the majority of nights is the simple question of why me? Why did I get a brain tumor? What do I have in common with one in 100,000 other people who have Acoustic Neuromas?

First let me say that I consider myself lucky. Lucky that I have a 99.9% benign brain tumor. Lucky that my tumor is the size of a tic tac and not the size of a plum. Lucky that my tumor isn't already causing daffiness and facial paralysis. I'm lucky.

But really, why me.

I've thought about it and here is what I have come up with ... did one of the following cause my tumor?

1. Radiation: Though it hasn't been scientifically proven, it is said that radiation from cell phones might be linked to acoustic neuromas. But MILLIONS and BILLIONS and TRILLIONS of people use cell phones everyday, yet still only 1 in 100,000 people have acoustic neuromas. My friend Emily sent me links to a few articles regarding cell phones being linked to high radiation levels. (Be sure to click on both links if you are interested, as they are different.)

Reading one woman's account of her brain tumor surgery she mentioned waking up and immediately requesting her cell phone. That would be indicative of a cell phone addiction problem, which I definitely have. So, really, could I have this thing on my 8th cranial nerve because I talk on my cell phone too much? I mean, I have spent five years with long distance boyfriends - why don't they have acoustic neuromas? Not that I would wish that on anyone.

When I was a little girl I used to microwave dinners for my brother and myself every night. I would stand by the microwave door waiting for the timer to ding. Did my hunger and impatience give me this damn tumor?

2. Drugs: I was a bad teenager. I'm not proud of it. I liked to experiment with drugs. Not just the typical marijuana, but the bad stuff. I mean, I didn't shoot up, but I did like poppers and huffing stuff and other stuff. It was fun and funny. And hallucinations were fun to me. I blame Timothy Leary and Tom Wolfe and rock and roll. Which brings me to ...

3. Loud Music: I've been to a lot of loud shows in my 38 years. A lot. From the time I was a little girl I have loved music. I have stood next to loud, thumping speakers at least 200 hundred times. But so have billions of other people.

4. Mercury: No, not the planet, but the element. One of my stepfathers had a little vial of it when I was a little girl. I would always sneak it out of his sock drawer and pour it into my hand or on a table and break it up. It was fascinating to me. I seriously played with it a lot. It probably wasn't good for me and may very well have given me a tumor.

I mean, what little kid wouldn't want to play with this?

5. Lead Paint: I once had a little armoire when I was a baby. I remember it. It was right next to my bed. It was painted pink. I had a horrible early childhood and this is one of the only things I remember. I was VERY young and as a way of coping with the stress of being in an abusive household (this was obviously before I lived with my dear Nana), I would lay in bed and pick off the paint. It peeled off quite easily and it would relax me - even as a toddler. I would peel of the paint and eat it. I don't know why I would eat it, but I would. Gross, I know. It had to have had lead in it. Is that what made me get a tumor?

6. Pregnancy: Last year my friend Lisa died. After her second child was born she was diagnosed with AML (leukemia) and she died within a year - before her baby's first birthday. The doctors said that it was always there, that she was born with it. But they also told her that it was her pregnancy that made it flare up. I am sure the doctor didn't use the phrase "flare up." But it was because her body changed during pregnancy. My doctor said that my tumor has been around for about five years. My son is five years old. I am sure it's just a coincidence.

7. Mark: I blame Mark for everything now days. We broke up five years ago. It's his fault. I should stick to that. Anytime I am around Mark this is what happens ...

I'm kidding. I don't blame Mark for anything. But it would be easy to blame him for a lot. In the past month I have often thought, why on earth isn't he the one with the tumor. He deserves it more than me. But that is malicious. He doesn't deserve this. No one does.

8. Diet Coke (and other processed bullshit): I have had lots of diet coke in my day. It's not good for you. When I was pregnant my doctor told me to drink full sugar pop if I was going to drink it at all. Artificial sweeteners just aren't good. It does horrible things to rats. What about all the MSG and shit I put into my body on a daily basis. My fat ass is proof that I have obviously exceeded moderation. So, should I blame processed food or artificial sweetener? It'd be easy to.

9. Men: I know you can't catch brain tumors, but if you could, I would have definitely caught it from a few of the men I have dated in the past. I mean, there was that catholic loser who thought he could "save me," or the jerky doctor who punched me in the face and what about the race car driver guy with one leg? I swear, I am not making this shit up. Which brings me to ...

10. Karma: So, yeah, the race car driver with one leg was a really nice guy. I broke up with him because he had one leg. I couldn't handle it. That's shitty. Is this tumor karma's way of biting me in the ass so to speak? Probably. Do I deserve it? Maybe. But really I am a very nice, thoughtful girl, typically. I don't deserve this at all. But who does?

Last week my housekeeper (Jonna - she is amazing and you should use her. Plug for Jonna! Holler!) told me that people like me get tumors. At first I was like, gee thanks! But then she went on to say that it's because I am strong and can handle it better than most people. And that she thinks that I am capable of being positive and fighting and getting through it with flying colors. I think it was a compliment. I think she thinks the same thing Bruce does - that I am strong, powerful, thoughtful, capable and ready to kick this tumor's ass. They are right. I am ready. Scared shitless, but ready nonetheless.

Thanks for sticking with me.

Why learning about cool people with brain tumors makes me feel so much better about mine ...

I took a vacation.

A VACATION!!!!!!

Although I have traveled quite a bit in recent years (on business, to see my long distance boyfriend(s), to visit friends, etc.), I haven't had a proper vacation since 2004.

I really needed this vacation. Five days on sea and in Mexico. It was glorious. I mean, it was a really, really good time.

I went with my friend Emily.

I laid out on the beach and didn't want to leave.

I drank copious amounts of booze.

I sweated. A lot.

We got sunburned.

I watched my worries float away. At least for a moment.

It was over way too quickly.

I used all my vacation time, which in hindsight is probably stupid considering I will have to take unpaid leave after surgery. But I don't care. I needed this vacation - it very well could be my last.

I know, I know ... that's so macabre.

Whatever.

But vacation isn't the subject of today's blog.

Last night, whilst surfing the Internets, I came across something that turned my frown upside down. That's such a grandma phrase and really, I wasn't frowning at all.

One of my favorite actors, and definitely one I crush on from time to time, also had an acoustic neuroma. Get ready for it ...

SEXY ASS MARK RUFFOLO had surgery for his AN back in 2002 and suffered serious facial paralysis. Which he later overcame 99% of it.

I think you can sorta see the bottom left of his lip is still a little dangly and super cute. If I have sexy, cute, adorable, hangy paralysis lip like Mark Ruffolo after my surgery I will be chuffed.

Chuffed = British slang for pleased, satisfied, etc.

Is it just me, or is Mark Ruffolo the cutest actor on the planet?

Upon researching Mark and his tumor, I found this guy:

Adorable, Hilarious, Funny Tumor Guy Who Wanted To Call Mark Ruffalo

I might write to this guy. His tumor is different than mine, but nevertheless, he seems funny.

Hey, it just struck me that humor rhymes with tumor. I should write a rap. I will write a rap. A humorous tumorous rap.

My surgery consult is on November 1. They (not really sure how to define who "they" is) say that surgery is scheduled VERY soon after your surgery consult, so I'm thinking that my surg will be in early November. There is so much to get done.

1. Finish my living will. (This is very sad for me - and I will surely blog about it.)
2. Clean my office and write several schedules and to do lists for while I am recovering, or in case I die. (This is a huge project.)
3. De-hoard. Meaning, clean and organize my whole house so I can recover comfortably.
4. Figure out how I am going to live financially during recovery. I might have to hook this month in order to build up a nest egg so my son can eat and I can have cable and Internets - oh, and a roof over our heads.
5. Write letters and journal for my little boy. In case I die.
6. Seek therapy for this little issue I am having regarding death.
7. Love on my son as much as possible.
8. Get a bitchin' haircut that will include shaving the left side of my head in a fashionable manner.
9. Call all my creditors, utilities, etc., to see if I can get extensions and forgiveness on bills I will owe during recovery time.
10. Have copious amounts of sex. Just kidding. Although I wish I weren't.

That's all for now.

Love, Schwannomas and French Accents

First of all, I want to thank each of you who read, commented, texted, e-mailed, sent candy bouquets, etc.! You have NO IDEA how much your love and support means to me. It means the world. And having you in my life makes this journey so much more tolerable. Thank you.

Incidentally, I really didn't receive a candy bouquet. But that would be rad if I were to receive one soon. ;-)

My work colleague, Mary (AKA the best, most amazingly wonderful communications assistant on the planet), sent me a news story with this note attached to it:

My dearest, lovely, coolest, smartest, most beautiful woman in the world, Joey:

It'd be pretty freakin' awes if you came out of surgery with a normal looking face & a sweet accent ... just sayin!

Crazy English Woman with Migraine/Brain Issues Turns French 

That made me giggle.

Incidentally, I made up that salutation, but I know Mary really believes all those things.

I thought about changing the name of my blog today to My My My My Schwannoma. I still might. But first I Googled it to see if anyone else has used the name.

I didn't find a blog with the same name, but I did find this brilliant masterpiece.

That video led me to this video about a girl with an addiction claiming that she'd be better off with a brain tumor. Wow, that really pissed off a lot of people with brain tumors.


Incidentally, I am tracking how many times I use the word "incidentally."

This blog post is really random today.

I got some sleep last night - asleep before midnight, which is early for me. Thus, today I haven't had one headache, but I've been incredibly dizzy. I think it's because I was sniffing Sharpies earlier this morning.

Incidentally, that was a joke.

I am going to stop writing now before I bore myself to tears.

I'll be more clever tomorrow.

Ancora Imparo!

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.