Saturday, May 4, 2013

Can you hear me now? No, I can't.

Two years ago today I was lying in a hospital bed in ICU. I don't remember much - but I do remember it being dark. And I remember being alone, and in and out of a deep slumber. I remember feeling very blessed and very safe. I remember feeling very taken care of. My nurses were amazing. I was not in pain. I was not scared. I was thirsty. And warm - slightly too warm. And I was uncomfortable. I remember that although I was relaxed, my heart was beating out of my chest.

Yes, two years ago, on Wednesday, May 4, I was resting after a 14-hour brain surgery. The technical term was translabyrinthine craniotomy. Doctors delicately removed the acoustic neuroma brain tumor I had growing on my 8th cranial nerve.

I started experiencing (and noticing) hearing loss near the end of 2009. I had experienced headaches and balance issues before then, but I ignored them and considered stress, exhaustion and clumsiness as the culprit.

Mid-2010 I decided that enough was enough. I couldn't hear my friends when we went out. And because I didn't know what was going on or how to deal with it, I would get frustrated. So I made an appointment with my family doctor.

In a matter of two months I had lots of doctors appointments (I won't rehash what I have already blogged about) and was diagnosed with the tumor. And after watching videos, reading blogs and hearing horror stories, I decided to choose my attitude. I was determined to make the entire experience positive. It was difficult at times, but for the most part I rocked it.

Tumor - I named it CiCi because it looked like a candy corn
When you have an acoustic neuroma you generally will have two doctors - an ENT specialist/surgeon and a neurosurgeon. And you get very close to them. I absolutely LOVE Dr. David White (Oklahoma Ear, Nose and Throat) and Dr. David Fell (Neurosurgery Specialists of Tulsa).

My tumor was smaller than most. Oftentimes hearing is the last thing to go in patients with this type of tumor. I was lucky (weird to say) because my hearing was affected quite early in the tumor growth process. Doctor suggested that I had been growing that little bitch for 5 years. It was just under 1 cm when I got my first MRI, and just over 1 cm before surgery.

Generally doctors will wait and watch. That method doesn't work for someone like me. I am too high strung and anxious. I wanted that sucker out. Surgery would have definitely been inevitable as it grew larger. Once an AN tumor gets large, it can press on the brain stem and kill a person. So getting it out one way or another was going to have to happen sooner or later.

I didn't want to get the non-surgical radiation treatment. And my doctors said that they usually do that with much older patients. They recommended the actual let's-cut-your-brain-open-and-do-this-shit surgery. And although I was scared to death, I opted for it.

And here is why ...

Because the tumor was so small, doctors thought they could save my facial nerve. The 8th cranial nerve (that is where my tumor resided) is a strand of nerves that contain the facial nerve, balance nerve and hearing nerve. My hearing was already obliterated. And doctors made it very clear that it would completely go away after surgery - leaving me 100% deaf on the left side. Since the hearing was already 90% gone, I didn't care. However, many patients will have severe facial nerve damage. I did not want that. Balance issues you adjust to, but not facial nerve damage. I am very vain - I have to be honest. Taking the tumor out before it gets really big will make facial nerve damage less of an issue. And that's why I say I am blessed.

Some patients who have the surgery will experience facial weakness and drooping and some even have weights put in their eyelids. I didn't want to do that.

So, on this day two years ago I spent the morning with my little boy, my mom and my best friend Emily. And then they wheeled me in to surgery. I cried so hard as they were wheeling me to the OR. I was so scared of dying. I had made arrangements for my little boy, but that didn't ease my mind. What DID ease my mind is when I was finally pushed in to the OR and saw my doctors and all the sweet nurses. I joked with them a bit, and asked them to be positive and not let me die.

Before surgery - fairly zoned out
Then I was asleep and being woken up in ICU. I saw nurses, my two doctors, my son, my mom and Emily. It was surreal. I didn't think I was dead. I wasn't in pain. And I felt happy (could have been the morphine). I remember winking my left eye and being elated. I looked at my doctor and winked again. He was thrilled to tell me that my facial nerve was 100% in tact.

Then I fell asleep. That was two years ago. I just can't believe how time has flown.

I am very grateful, still.

The next morning I woke up and drank gallons of juice and water. I was so thirsty.

The morning after
 I was home within three days. And back to work in four weeks. I could have gone back earlier. But my doctors made it mandatory to rest for four weeks.

Swollen head with sutures still in place
While they had my head cut open they inserted the BAHA implant. That is this cool implant that is in my mastoid bone. I have a little snap that sticks out of my skull and a device I can wear on it. It doesn't technically make me hear. But it does allow me to hear. Confusing, huh? It's science shit, I can't explain it.

The day I got my stitches out
 However, I have never really worn it. It hurts. And sometimes my head still hurts. And my brain surgery scar hurts sometimes. And my head swells on the left side. But I don't have a tumor anymore. But what I do have is a small little cyst around my BAHA abutment. It's definitely not cancerous, just annoying. Doctor is going to change the size of the abutment and fix me up in a few weeks. Then maybe I can start wearing the BAHA.

The most difficult part of the entire ordeal has been my loss of hearing. It really sucks. And although I have adjusted to it by sitting strategically when I go out, I am still not used to it. It's so damned frustrating. I have stopped asking for people to repeat themselves. Instead I just ignore them if I don't hear what they say. And I am terribly tired of telling my friends and coworkers that I am deaf on the left side. I know they must know by now, but because they don't have to live with the deafness, they forget. And it sucks.

I have used the single sided deafness to my advantage at work some. It's nice to be able to ignore someone and then blame it on my hearing loss.

Overall, I am great. Blessed. Lucky. Thankful. Grateful. And full of life. My friends were so amazing during my plight and I will never be able to thank them enough. And my doctors, man, they were awesome, too!

So if you are reading this after finding my blog by researching acoustic neuromas, and if you have one and don't know what to do, here is my advice.

1. Choose your attitude. Decide to be positive and never negative, no matter how bad the ringing in your ears gets. No matter how bad your head hurts. No matter how much it sucks not hearing people. No matter what. Stay positive. It's easier said than done, but it's not impossible.
2. Opt for surgery sooner than later.
3. Listen to your doctor - they really know what's best.
4. Make all your plans before surgery - living will, and all that sad shit that you never want to think about. If you are a control freak like me, you will feel better having done all the grueling stuff before surgery.
5. Stay positive. Did I already mention that?!
6. Get as healthy as possible before your surgery. Eat well. Sleep well. Work out a bit. I was definitely not the epitome of health (and I am still not), but eating, sleeping and moving well before surgery definitely made a difference.
7. Eat well, sleep well and move a lot after surgery. Walk as much as possible to get used to that balance crap.
8. Don't mope. Especially after surgery. First of all, it's a bummer and super unbecoming and your friends will hate it. Plus, it will just depress you if you mope.
9. Drink fresh fruit smoothies for at least a month after surgery. You will have a weird appetite after surgery and everything will taste like shitty cardboard. But smoothies will taste delicious.
10. Love those around you and be grateful.

Ancora Imparo, for real!


Monday, January 21, 2013

I'm PREGNANT! Well, I was ...

I have started and restarted this blog more than 100 times. And not just recently. I have been writing this blog for years in my head.

But it’s time. I have to write about it now. Because it’s a very relevant part of my life.

What am I talking about?

Well, I am talking about my big secret. Although it’s never really been a secret. Just something I don’t talk about. Something I haven’t talked about. Many of my very close friends know what I am writing about. Many of my old friends were there. Several of you reading might be shocked. Some not.

Let me back up a bit.

About a year ago I was sitting at a girlfriend’s house drinking champagne and shooting the shit. Something I have become quite good at. This particular girlfriend is very inquisitive. Randomly, and off topic, she asked, “Joey, why are you so passionate about reproductive health?”

This is a question I have been asked many times, by many different people. And I have never delved in to it completely and have never honestly answered the question. Everyone I know just lives with the fact that I talk about abortion and birth control all the time.

Is this about abortion? Is that my big secret? No. That’s no secret and it’s not a big deal. Yes, I have had an abortion.

My passion for all things reproductive comes down to one thing. Choice.

When I was very young I had several choices taken away from me – choices that have to do with sexuality and intimacy. Sexual abuse and molestation to the most egregious degree. But that is something that is difficult for me to talk about and will have to wait for a while before I am ready to write about it. And that time may never come.

When I willingly became sexually active, at a very early age (maybe not by today’s standards), I had the choice of getting birth control. The Tulsa Health Department and Planned Parenthood made birth control options very available to me. I am thankful for that. I finally had choices that I could make on my own.

A few years after that, I met the first man I truly fell in love with. It was romantic. And dangerous. And foolish. And I loved every minute of it.

I was barely out of high school and headed to college as a young freshman. I was emotionally immature and as wild as wild gets.

This boy and I fell in love and I quickly dropped out of college after my first semester. We moved in together and lived a crazy (albeit fun) life. Not all of it was fun, however.

Here comes the point of this blog …

Soon after dropping out of college, I was pregnant. At 18. I chose to forget my pills for days at a time (maybe not wisely or even purposely). I thought I was in love. I didn’t have time for reason or sense.
I remember going to the doctor to confirm what we knew was fact. And we cried and cried and cried. We thought about all the crazy things we had done leading up to that point. Drugs, lots of drinking and tons of debauchery. We knew we weren’t ready to become parents. But at that moment in time, we chose to try.

Nothing in my past had led me to believe that abortion was not an option. But there was not one moment that I even considered it. Not because I thought it was wrong, but just because I didn’t want to have one.

I had never had a normal family life. I was raised primarily by my grandma, and had pretty much been on my own since I was 16. My mom was a drug addict and my father was absent and signed over all rights when I was an infant. In my young, immature mind, I wanted a family.

So we spent the next eight months preparing for a baby. The only thing that changed in our lifestyle was that I no longer abused my body with booze and drugs. However, nothing more changed. We still went out. My baby daddy was in a sometimes touring band at the time and we invited bands to play in Tulsa and stay with us. It was still a seemingly fun life, although I was growing plumper and rosier by the day.

My baby daddy (many of you reading this know his name, but since he isn’t choosing to write this, then I will keep it private) was amazing throughout my entire pregnancy.

I felt good and positive the entire time. My high school friends had a baby shower for me. We owned a night club/show venue for a short time (those adventures could be a blog all on its own) and our band friends threw us a baby shower, too. Everyone was excited for us.

On February 25, 1992, I went into labor. My contractions were tame at first. Many (MANY) friends came to the hospital. Our friends Mike and Liz visited early into my labor and delivered a beautiful bouquet of pink carnations to serve as my focal point. A focal point is something I needed, as I had chosen (there is that word again) to have my baby naturally.

The waiting rooms (yes, all of them in the maternity ward) were full of old friends, family and punk rockers. They were all excited to see what we had created. Would it be Satan’s spawn?

Early in the evening on 2/25/92, I pushed and pushed (never once yelled and screamed), and soon delivered a beautiful, perfectly healthy little girl. We named her Sidney Abigail — Sidney after Syd Barrett, although spelled differently, and Abigail after Abbey Road and also, Abby on Knots Landing. Not kidding. It was my favorite TV Show.

Baby Daddy and I didn’t want anyone seeing her until I was all cleaned up and in my room. This made his parents very angry. Apparently they threw a big fit in the waiting room. I only heard about it. This should have been a sign for what was to come.

The pain I felt for the week after giving birth was unlike any I had ever felt.  I didn’t have an episiotomy, and trust me, I needed one. Mothers reading this might know what I am talking about. And truthfully, I don’t think my body was fully developed yet. The pain below was nearly unbearable. And I couldn’t nurse because it hurt so badly. My boobs got engorged and the pain was sick.

We stayed with my nana for a week after Abbey was born. Nana helped a lot.

Reality kicked in very quickly and the fact that I was still a teenager with a newborn was emotionally harsh.

I didn’t have a job, wasn’t in school and I was a hot mess. Still, I tried. We tried.

What transpired over the next year was rough. Lots of fighting. Lots of cheating (on both sides). Lots of madness. We were young, dumb and not at all ready to be raising a child. I can admit it now, but we were even a little bit selfish. We didn’t want to give up our crazy ways to properly care for a baby.

I was very emotional during this time. I had never experienced heartbreak of a failing relationship. It was nearly too much to bear.

I was madly in love with my child, but worried that I wasn’t ready to take care of her.

Soon, baby daddy’s parents offered to help. They did look after her a lot, and when Abbey wasn’t with them, she would stay with her great grandmother on her father’s side. Baby daddy’s parents offered to put Abbey on their insurance so she would have healthcare. But the catch was that they had to have legal guardianship. We agreed. Soon it became a situation where Abbey was with them more than she was with us.

That’s when we made the decision to do what was best for her. We would let his parents legally adopt her. Was this easiest for us? Perhaps. But it was also the right thing to do. We were in no position to raise a sweet little baby girl.

Giving a baby up for adoption has always been attached to a stigma. It still is.

(Slight interjection: In a moment, I will post photos of Abbey. You will pee your pants when you see them, because she and I are like twins. She’s way prettier, though.)

Her grandparents promised a open adoption (obviously), but what transpired was anything but. They moved out of town. I became estranged from baby daddy. I didn’t have a car and I barely had a place to live. I couldn’t exercise my rights to visit her. In reality, because we had legally given her up for adoption, I had no rights. And baby daddy’s parents were more strict as they had promised. I was hurt and angry. My family was devastated. There was nothing I could do after the decision had been made.

It wasn’t too long before I came out of my funk, got my shit together and went back to school. I secured several good paying jobs before settling on my first long term professional job in 1995. During this time I had lost contact with baby daddy, his parents and Abbey. It was a sad time.

Abbey’s new parents (her grandparents) sent me a letter (copied baby daddy, my family and Abbey’s extended family on her biological father’s side) asking me to stop trying to see her – stating that she was better off and could adjust better if my family and I just stepped back and let her be. It made little sense to me, but I obliged. They knew her better at that point. And I didn’t want to harm her.

I began journaling about my experience – hoping that she would someday want to read it. I sent cards and letters for every holiday and her birthday to her great grandmother, whom I remained friends with. To this day, even. She would save them in chronological order for Abbey to someday read. She had been given strict orders to not let me see Abbey, otherwise, her visitation would be permanently cut off. Very shitty, as I recall. And to this day it makes my blood boil.

So as each day, week, month and year passed, I became more stable. Birth control was something I was very diligent about. I didn’t want to give Abbey up for adoption, only to get pregnant soon after. How would she feel if I did that?

I consulted attorneys for the first few years to try to overturn the adoption. But I always stopped just before filing because I didn’t want to disrupt Abbey’s life.

I spent a lot of hours reasoning with myself. Keeping it inside. Keeping my feelings all my own. Over the years I came to terms with it all. But I never once stopped journaling and sending cards and letters.

When I met Harrison’s dad I sent photos in the cards and little notes.

Harrison was very much planned and there was a reason I waited until I was in my 30s to have another child. It was a choice — a very planned decision. When he was born I would send Abbey photos of her brother, in care of her great grandmother.

After Harrison’s dad and I divorced, I began dating. I would tell the story of Abbey to every man I dated. Most didn’t think it was a big deal. Not like I really dated that much, but still. It was important for me to be honest and tell them.

In early 2008 I received several calls from Abbey’s great-grandmother. I was in a new relationship, very busy as a single mother and work was demanding. She left many messages asking me to call her. Finally it occurred to me that it might be an emergency — Abbey could be in trouble.

When she picked up the phone and after announcing myself, all she said was, “Abbey knows. She found the letters and cards.” I was in my car. At a stoplight. I instantly started crying. I couldn’t speak. I had so many emotions rush to my head. This is what I had dreamed about. What I wanted for so many years. I had so many questions.

Abbey and I connected via Myspace and email. I shared it with my boyfriend at the time, a few very close friends and my mother (who had been drug free for many years, thankfully).

Still, our blossoming relationship was very private. At least to me, it was. I wanted to get to know her on her terms. I didn’t push her. She didn’t want to tell her parents.

Speaking of which, her parents had let her grow up thinking that her father and uncle were her brothers. She was smarter than that. Still, I think it a little odd, and slightly twisted. She still calls them her brothers. Since I am being honest, I will say that it makes me slightly uncomfortable.

(Note: As angry as I have been over the years at the people who adopted Abbey, I am forever grateful that they gave up their empty nest years to love and raise a wonderful, thoughtful, intelligent, smart, kind, giving child. I will be forever thankful to them.)

Eventually Abbey and I spoke on the phone. And in 2011 just before my brain surgery, her brother (um, her bio dad) brought her over to my house to meet me. I refrained from smothering her with hugs and kisses.

Sidney Abigail - She's obviously mine.

Still, she was keeping our relationship private and secret from her parents. I was not in favor of the deception. I mentioned it many times, but still let her go at her own pace. The ball has always been in her court.

Sweet little baby child

Over the past few years we have built a relationship. I keep telling her that I will blog about it, but I am slow moving. Which is funny, considering I’ve wanted a relationship with her for so long.

Also, her bio dad and I have built a friendship. Not a serious one, but a friendly one.

In October, Abbey texted me, and read me the riot act. Several pages of angry texts. She had told her parents. They were hurt and pissed. She was emotional and accused me of not being there for her. She was right. I wasn’t there for her. I had been very absent last year.

I am getting ahead of myself.

I’ve told the story, now. I am the mother to a nearly 21-year-old daughter and an 8-year-old son. Shocking? Perhaps. But maybe not, after all, it’s 2013.

Abbey spells her name without the “e.” But I still spell it Abbey. She and I look so much alike, it’s weird. She is funny and smart. She loves her little brother. And he loves her. She goes to college.

Abs and her little brother.

I will stop here. I am starting to ramble.

I will continue writing about this subject, because there is so much to say and write about. I have always used journaling as a form of therapy. This will be no different. I need advice. I am still not used to having a daughter. I have lots of questions. I went from only raising a young son to also being the mother of a teenaged daughter. And now an adult daughter. So, there is much more to come. Much more to say.

The title of this blog will remain Ancora Imparo Girl, because I still live by that motto. I am definitely still learning.

Stayed tuned for the next blog: I Have a Lesbian Daughter