Saturday, May 3, 2014

Blog Change

Dear readers:
I am still actively writing. I have a new blog and I have chosen Tumblr as my blog platform. In hindsight I would have started another blog on blogger. Oh well, it's on tumblr. Check it out and follow me, if you will. It's a fun project.


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

Monday, August 8, 2011

DON'T PANIC! It's almost over ... and mostly harmless.

It's not entirely unlike me to share — enjoy this list:

1. In less than 42 hours I should, if all goes well, be recovering from surgery. Hopefully even recovering at home.
2. I will most likely be recovering at my dear friend Zachary's house. At least partially.
Muscley, all around amazing man, Zachary.

3. Nearly 14 weeks ago I underwent a 10 hour brain tumor removal surgery.
4. I am COMPLETELY bad ass!
Bad Ass in the flesh.

5. The scar was wicked. And it hurt a little. Sometimes more than a little.
6. I've recovered nicely.
7. I'm very lucky.
9. Since my surgery I have had loads of fun. Met new people. Developed really awesome new friendships.
10. When the surgeons performed the craniotomy in May they also put the BAHA sleeper in to my mastoid bone.
11. The BAHA implant comes in two different parts. The sleeper that is inserted into the mastoid bone (it takes about 10-12 weeks to fully heal). The abutment, which is the titanium snap thingy that hooks on to the sleeper and sticks out of my head for the rest of my life.
The BAHA abutment.

12. The third part is the device. The device is what I attach to the abutment and can remove and adjust as I see fit.
This is what the device looks like.

13.  My device will be the same color as the one above. To match my hair. But I change my hair color a lot. This is a concern. My hair is surely thick enough to cover the ugly thing.
14. On Wednesday, August 10, 2011, my surgeon will slice open my scalp and skull AGAIN to insert the abutment.
15. Around two weeks later I should be able to wear the device. The BAHA will trick my brain and left ear into hearing again. Although I won't be hearing at all. It's all very weird and sci-fi.
16. The surgery shouldn't take too long. Maybe 2-4 hours.
17. It will be super gnarly afterward. Probably worse than my pretty brain surgery scar. My surgeon will likely cut a 3/4 square flap in order to put in the abutment. And then I'll have stitches around the abutment, as well. It'll be so sexy. And I will be so foxy.
I will likely look like this in 48 hours.

18. This surgery is slightly less scary - but I am still scared nonetheless. In my mind I can't think of anything going as well as the first surgery.
19. One of my BFFs, Sammi, will take me to the hospital and stay in the waiting room posting on facebook regarding my progress.
Sweet Sammi

20. I likely have another tumor.
21. It's true.
22. After the brain surgery in May they tested the tumor - it was benign. We all cheered.
23. On 7/20/11 I had a baseline MRI so we will have something to "base" the next MRI on that I was supposed to have in a year from now.
24. The baseline showed a new growth mass, 8 mm. One doctor thinks it's scar tissue, the other thinks it's a new tumor. I think it's all an evil bunch of karmic bullshit. And I am pissed.
25. I guess we will watch it like the last one and see what it does.
26. I think my BFF Emily is going to still be in charge of Harrison if something happens to me. But she will have lots of help.
My and Harrison's Emily.

27. I am more than likely going to be in medical debt for the rest of my life.
28. I may have to go on Oprah's debt diet.
29. Again.
30. I really don't want to file medical bankruptcy.
31. My little boy is so amazing and funny and loving and awesome and all adjectives that are good.
My whole life.

32. I'm fairly caught up with work, so I think I can comfortably take off this week to recover.
33. I have friends committed to pampering me and loving on me this week. Again, I am a lucky duck.
34. I'm on week 2 of Couch to 5K - I've been on week two for about 37 weeks now. I am rad, I know.
35. I wanted a perm in my hair, but my stylist told me that it wouldn't work in my hair and it would look like cotton candy. I hope she will at least come over and trim my bangs this week, since I will have a massive new scar and will feel super ugly.
My cute stylist and friend, Jennie.

36. She's smart, though. So I trust her.
37. I hope that Zachy will make me some BBQ pot roast sandwiches whilst I am recovering.
38. I hope to get lots of foot rubs during my recovery. It's imperative for the success of my recovery. I swear, it's true, TD! ;-)
39. I'm fairly sure my Monika (also in my BFF circle) will be taking care Harry some this week. At least a little.
Pretty Monika

40. But I will probably have him most of the time.
41. I'm going to get through this, right? Please tell me that I am. I'm scared.
42. And finally, yes, I am a geek.

Ancora Imparo!

Sunday, May 22, 2011

Almost 3 weeks post surgery - a picture blog

It's been 18 days since I had brain surgery. It's so hard to believe. I really thought I'd be in pain and out for the count for at least a month. I was wrong. Thankfully. Last week was the hardest week - my headaches and incision site were bad and painful. I couldn't sleep. But it seems like it's just gone away. I'm sleeping well now - a little too well. All good things. My taste buds came back in the middle of the night three nights ago. I woke up at 3:30 with a funny taste in my mouth - a savory taste. It was really weird. The next day I ate something savory and it was so good.

So things are going very well. I am going to start working part time at home starting tomorrow, and with the doctor's blessing (he hasn't agreed yet, but he will, hopefully) I will be going back full time on June 6.

Brain surgery is a serious thing. Sure, I had only a benign tumor, and sure there are people much worse off. But brain surgery in and of itself is very serious. 95% of my friends have been abnormally supportive. You know that already because I have been writing about it a lot. But what has me baffled more than anything are the friends who haven't been around. I won't get into details, but there is one in particular who has hurt my feelings beyond repair. The one person I needed and wanted the most to support me isn't around - he has seemingly purged me from his life. I don't get it. Then again, I don't get a lot of things. I guess I just deal with it and move on. Other than that there are a few friends whom I thought would be around, but they aren't. No biggie I guess - I just have to remember all the friends and loved ones who ARE around. And when I think about that, it makes me happy.

I've been treated very well and spoiled beyond belief. I never want it to end. But it surely will.

My little boy went on an overnight camping trip yesterday and just got home. I missed him so much - even though he was gone just over 24 hours. I'm so overprotective, and this was a test. I think I passed. He went with his good friend Maddox and Maddox's dad, Bart. I didn't bug Bart too much and Harry came back alive. I'm trying to chill lately on the overprotective bit.

Maddox and Harrison

Yesterday was my first day/night off without Harry since my surgery. So I decided to overdo it. And I spent all day/night out doing things.

First we went to the Blue Dome Arts Festival. We saw Sammi and her booth – she makes and sells upcycled (I think that's the term) jewelry using vintage stuff. It's really great. You should buy stuff from her. She also sells recycled, upcycled gift tags, cards, etc. She is so creative.

We walked around and saw lots of other vendors/artists. We met up with Alana and had a little snack - a pulled pork taco with chimichuri sauce. It was splendid and that's when I knew my tastebuds were back.

We had a beer in Arnie's beer garden. Well, I had a Shandy (half beer, half lemonade) because I was being super cautious. My balance is really good (better than it's been in years), but I wanted to be cautious - I'd hate to fall on my first full day out.

Then we walked to Fat Guys for proper lunch. It was quite a hike, but it was a good thing. We met up with Zach and Dylan.


We all had lunch. It was busy. Emily and I shared a burger – because neither of us can finish a whole one by ourselves.

Then we all piled into the back of Zachary's car — well, they piled in the back, I called shotgun. Of course.

And we went to the old abandoned Big Ten Ballroom in north Tulsa where our friend Lee Chapman did an art display on Thursday. It's the 40th anniversary of Larry Clark's photobook, TULSA. Huge posters of the artwork were cleverly and artistically displayed on the open air walls of the very cool venue. Broken glass, nails and chipped paint abound. Very good work. Once we got there the show was very clearly over and the winds and rain had destroyed most of Lee's work. However, it was eerie and very cool. Standing water in the middle of the roofless building reminded me of a huge bath. The building's vintage tile (although torn and destroyed) was so cool.

Alana looking artsy.

Emily looking artsy.

Then I went home to take a nap. It was a really good nap.

After napping we all had dinner together. Dylan made one of my favorite meals – homemade chicken and dumplings. And spinach salad with his homegrown spinach and radishes. Mmmmmm. It was all so good.

Next we headed to the Cellar Dweller where I hadn't been since the benefit three weeks ago. I wore high heels and never once felt unbalanced or dizzy — not even walking down the steep staircase leading down the the bar.

My friend Jamie showed up with a dish of still warm brownies for me. Seriously, my friends spoil me rotten.

We sat at the big table with a group of friends — Robert was there, Leib, Jamie, Dylan, Emily, Alana and so many more. Wes and Zach were tending bar.

Zach is the biggest spoiler of me. He greeted me with a pineapple whip drink made with Pinnacle's Whipped vodka. Next up was an adult Orange Julius. Oh my!

And then a frozen mojito — my favorite!

It was so good. I was slightly buzzed. Then we went home.

I had a great day, night and excellent night's sleep.

This morning I've just been putzing about and now we are going to lunch — Cancun. Chili Verde Burrito. mmmmmmmmmm

Tonight I'm having dinner with Emily and her mom.

Tomorrow I start working part time from home. I look forward to it. I'll also be going to the gym to get my couch to 5K on.

My next blog (possibly later today/tonight) will be all about the surgery experience. Many of you have asked, and because I started this whole blog in order to inform people who have Acoustic Neuromas and who want to know everything there is to know and want to read a positive spin on the whole thing, it's my duty to write about the surgery experience.

Monday, May 16, 2011

All Those Rules

What a week! I've been showered with love, affection, food, more love, cards, flowers, well-wishes, etc. But at night when it's dark, and everyone is asleep my headaches become more pronounced and I try to sleep. But it's difficult.

I eventually fall asleep due to extreme exhaustion. But I toss and turn and have nightmares and wake up in uncomfortable pain. No, the pain and headaches aren't excruciating, but very uncomfortable.

Good news ... each night gets better. Each day, too.

Today has been the best day yet. I slept OK last night, woke up to the sounds of my son watching Doctor Who. I woke up and made breakfast. Then did some tidying up. Later we went to a late lunch with Western, Zach and Emily. And a jaunt to the grocery store where I picked up some fruit for smoothies (still the only thing that tastes completely right). My sweet friend Jennifer brought over homemade BBQ chicken, potato salad and green beans and then Zach brought over frozen yogurt. I am getting so spoiled.

Tomorrow I will attempt to drive Harry to school. Then I am going to pamper myself all week in one way or another.

I am slowly but surely getting through sending all the thank you cards to friends all around the world. I am making each of them personal, and that takes a little time.

For the past two weeks I feel like "THANK YOU" is the thing I say the most. And after a while it starts sounding insincere, but let me just assure you, it's not. I am completely sincere when I say it. Because I mean it, with all my heart.

It's always been really hard for me to accept kindness and help. I don't know why, but I'm at a point in my life when I think I might start investigating why. My friend Sammi asked me the other day, "Joey, why do you think it's OK for certain people to treat you like shit?" I was shocked at the question. But then I realized that I do allow that way too often. Now that I see that people are intrinsically good, and the people who love me, LOVE me, I will never let anyone treat me like shit again.

So, when I say thank you, I mean it. Very sincerely.

I just rambled, I know.

When my grandma (nana) was alive (she died 4/3/01) I would talk to her several times a day. I worried about her from the time I was about four-year-old. I worried because she lived by herself. But truthfully, I know now that she was THE strongest, most amazing woman I have ever met. But still I worried about her.

I would end each phone call with, "OK nana, lock your doors, take your medicine, make sure the den door is locked, call me if you need me, get your lunch ready, lock the screen door, make sure the phone is hung up when you hang up with me, be careful, I love you." Seriously, every conversation ended with that.

Maybe I was not only a worrier, but extremely controlling. Jeez.

One time when I was about Harrison's age, I decided to end the conversation with "all those rules." She and I both knew that "all those rules" meant to lock up, take medicine, call me if she needed me and that I loved her.

So, I feel like using that or something similar with all the people who have helped me. The people who I thank several times a day. Not to make my appreciation any less sincere, but to summarize it, and hopefully make it more sincere.

Back to what Sammi was saying ... she said all that because she also asked me, "Joey, don't you think you deserve all this love and kindness?" And my response was an immediate, "no." What? Of course I deserve it. But it's really hard to be humble sometimes.

Nevertheless, I will never stop being thankful. And I'll never stop feeling truly blessed in life. I really consider myself to be lucky and blessed and loved and happy. I am.

So, it's nearly 1 a.m, and I think I will try sleeping soon. I just don't want to try and not be able to - It's upsetting to say the least. But I will try.

This week will be good. I have lots of plans. And I do tire easy, so no worries, I plan to also get rest and continue to recover. But I also plan on being good to myself. And plan to treat myself well.

My goal is to start working half days at home next week — I think my energy level will be high enough to do that, and I think my doctor will approve it. Let's just hope my employer does. I could really use the income. And my ultimate goal is to get released to go back full time on June 6.

I miss my routine. And I am so excited about this summer — I can feel it and I know it's going to be the best summer ever. And ultimately the best year ever.

I am starting to feel renewed.

I promise my next blog will be more entertaining.

All those rules!

Monday, May 9, 2011

Are you there, Gawd? It's me, Joey.

Less than a week ago I was sitting in this big green chair writing my goodbye letters, finalizing instructions for Harrison's care and feeling scared.

I was doing all this mainly to be responsible. It would have been irresponsible to not prepare for the worst.

I had (still have) bands of friends behind me — near and dear, close, family, friends I barely know, some I don't know or have never met, prayer groups, spiritual guides, etc.

Friends told me that I would be OK. But how would they know? Seriously, friends were INSISTENT that I was "all good," and that "I would sail through like a champ." Many of them called me strong, insisting that I was the "strongest they knew." Still, I was unsure.

But, after a seven hour brain surgery on Wednesday, May, 4, 2011, I am most certainly alive! Was it all easy peasy lemon squeezy? Yes, for the most part. Though the docs say that they had a two hour delay when they hit a bulbous vein near my cranial nerve. YIKES? Yikes in deed! I bled out about "two tea cups of blood," and once they fixed it they were able to go around it.

After I woke up from the surgery I don't remember much. I remember feeling groggy and not wanting visitors. I remember being so thankful to be alive. I remember wanting to at least see my little boy's face. I remember moving the left size of my face over and over and over again.

The biggest risks I was worried about:

1. Death.
2. Facial Paralysis.
3. Increased Dizziness and Balance Issues.
4. Brain and Spinal Fluid Leaks.

It's 6 days after surgery and I suffered none of the risks (knock on wood) and was released from the hospital less than 72 hours after being admitted. I was in ICU for less than 24 hours. I was up using the loo on my own after mere hours out of the operating room.

So, all those friends behind me, all the prayers, all the wisdom, all the positive energy ... it worked!!! It really, really, really worked!

Was it divine intervention? That's normally not my thing — I've never been that into religious, though I've always been fond of prayer and spirituality. Was it the positive energy coming from all sides of my universe? Was it my shear desire to live and be a mother to my son for as long as possible? Was it the impeccable steady, experienced hands of the surgeons? A combination of all? Whatever it was, thank you — thank you friends, thank you God, thank you doctors, thank you all! This surgery saved my life. And I am going to take this life and live it. Hopefully for a very long time.

I've always been a happy girl, even through bad times — but I am going to take this second chance and be happier than ever. I have a lot of life to live and lots to do.

New goals:

1. Start a book this week. One that I will be really serious about publishing.
2. Love on my son even more than before.
3. Get well so I can start a new fitness plan — one I take very seriously, just as seriously as I take living and not dying.
4. Go back to work (as soon as I don't tire after 15 minutes at a time) and use the creative freedom I've been given for the past 11 years — propelling women's barbershop music into the 21st century ... finally. Maybe even search for a new career.
5. Find a new husband — a life partner, a best friend, a lover. Seriously this time. Maybe I already know him, maybe I don't. But now I have a new lease on life, and that new lease includes my love life.
6. Become a better friend.
7. Grow closer to my mom.
8. Be a positive support to all those in the world seeking out positive Acoustic Neuroma brain tumor cases.
9. Find a new hobby.
10. Hurt my body less.

Ancora Imparo!