Thursday, March 24, 2011

Chicken Fried Steak is My Favorite (a true short story)

Believe it or not, I write about more than brain tumors. In fact, I write for a living. Sometimes it gets monotonous — especially when I don't actually enjoy what I am writing about.

Lately I have been wanting to smell the roses. I think it's really time to smell the roses, if you will. I need to appreciate things more — the simple things. I tend to take things for granted. Like my hearing for instance. Because everything could be gone in an instant.

I'm tending bar at my best friend's bar one night a week. It's just a way to get out and have a little adult time, whilst also making a little cash. It's fun, but actually hard work. I think I'm good at it. I'm friendly and talkative and I enjoy people.

On Tuesday there was an American Airlines pilot having a beer at the bar — the hotel across the street from the bar sends them over. He was a nice guy and we chatted for several hours. At one point he reached across the bar and grabbed my hand and said, "Joey, you are so pleasant to be around. You have such a nice smile." At first I thought he was coming on to me, but then a stranger at the end of the bar said, "Yes, she does have a really nice smile." I blushed and giggled a bit. Then they both said, "And a cute giggle." Believe it or not, I am shy when it comes to compliments, so I sorta shrugged my shoulders and said, "Aw, that's sweet, thank you." And I was nervous until they left. Ha.

My point is, I AM a nice person. Lots of people like me, and I really think it's because I am nice. Simply nice.

However, I have my moments when I am not nice. When I am mean. I have a temper sometimes. And sometimes I talk bad about people. I don't hate people easily, but I do dislike a few. There are only a few times I have been truly mean, and I regret it every single day.

Four years ago or so I met a really nice boy. He wasn't my type necessarily (although he wore glasses, was tall and had a lot of passion). He was more blue collar than I was used to. Less academic. He owned a shop and he built custom race car engines. He drove a wicked cute little sports car, took me on fancy dates and intrigued me with the unknown. He liked me a whole lot. He told me I was pretty and smart. A lot.

On our first official date he gave me a gift. A pink Kershaw assisted opening knife like this one:

I wasn't freaked out at all. In fact, I was thrilled! What an awesome gift. He didn't like me carrying concealed (my gat) and he knew (even in the short time we'd known each other) that I loved pink.

He lived in a town about 2.5 hours away. Yet, he would drive to town just to take me to lunch. He adored me.

After a few dates I thought I'd invite him to stay the weekend. Yep, I was ready to check out his goods. What what?!?

So, we agreed on a Monday that he would come to town on Friday and spend the weekend — we would go out with friends, eat, drink, be merry and whatever else. I was interested in the whatever else. Not because I'm a jerk, but because I like whatever else. 

On Wednesday he called me. He was sad. He was nervous. I could tell. He told me that he had something he wanted to discuss. Something to tell me. Was he married? A felon? A liar? What?

Although we had only gone out a few times, we had talked a lot. He mentioned his passion and excitement for racing — cars and motorcycles. I wasn't in to cars and the like, but I was interested in him, so I listened.

On that Wednesday he wanted to discuss a wreck he had talked about before. What he told me next was, in hindsight, so profound. He asked if I remembered the wreck he told me about where he was hospitalized for months. Yes, I remembered him talking about it.

Then he went on to tell me that he liked me a lot and didn't want me to be freaked out. What was it??? 

Then he told me that he had lost his left leg in the accident. Huh? I was confused. I'd been out with this man. He drove a standard, two seat sporty Mercedes. He was tall. Didn't look one-legged. I'd seen him walk, without impediment. What was I expecting? I was baffled.

He went on to say that he wasn't quite used to it. And didn't want it to change anything between us. But he imagined that things might get intimate that weekend (you know, the "whatever else") and he didn't want me to freak out. Then he asked if I was freaked out.

In my defense, it was a little shocking and sudden. Was I freaked out? No, not initially, believe it or not. Did I have questions? YES!

We spoke briefly about it and I told him, honestly at that moment, that I was not freaked out and to stop being foolish and that I would see him on Friday.

As soon as we got off the phone I immediately went online and the first thing that I typed into google was "sex with a one-legged man." Don't ever do that. I promise, it wasn't the search results I was necessarily looking for. I just wanted to know protocol. I wanted to know what I was supposed to do about being two-legged and dating a one-legged man. Was there protocol? Was I freaking out? Yes.

I discovered a few things during my extensive research. I found out that "peg leg" is not politically correct. And you all must know how interested I am in staying and maintaining a level of correctness. No, it's called, "residual limb."

I learned things. I learned that people missing the normal limbs that people are usually born with are sometimes unabashedly disabled. And that it's no big deal.

I freaked myself out. I psyched myself out!

(I really feel like I should take a break from this blog and continue it on another blog, but I'll lose momentum, so I am sorry if this is boring. I feel I have to tell this story. And there is a point, I swear.)

Friday came around. I was excited. He walked in, like a normal two-legged person. I had never noticed, but he did walk with a slight limp. I didn't want to mention, but because I was trying so hard to not mention it, I know I must have been glancing at his left leg more than normal.

I remember he looked so cute and was so excited to see me. I sidled up to him, tip-toed to give him a kiss. He was about 6'3". I wanted him to feel comfortable, so I was abnormally affectionate for a few hours.

We went out to dinner and drinks and then back to my place. I was so nervous. I drank a lot that night. 

We found ourselves in bed. And this is when my very rare meanness started.

We made out for a bit, each minute making me more and more nervous. Surely due to my own insecurities, I decided that I was too nervous to do the "whatever else," so I told him I was too tired. I rolled over and feigned sleep — I fake snored, just to seem believable. Although I am quite a snorer without faking.

The next morning I woke up and for a split second I had forgotten. I rolled over and saw that his cute face was already awake. Just laying there, sweetly (oh my God I am going to make myself cry remembering this - and you'll know why in a few more paragraphs). He was so happy I was awake. I cuddled up to him and then he whipped the sheet off himself to cover me up. Uh oh, oh, wait, oh my god. I was startled. His "leg" wasn't on, it was off - things came into focus very quickly and a flood of reality set in. His prosthetic was leaning against the wall. It had a shoe on it (of course).

I blushed and immediately became cold. I am not proud of this. I mean, up until this point I had lots of romantic experience, but never this exact experience. It was new to me.

We spent the rest of the weekend together. I liked him, I really did.

We had a few more weekends together, and then I had a business trip. For a week out of the country.

The day I was coming back home I was stuck in the Denver airport for 10 hours. I was homesick and I missed my son. During the trip I hadn't really spoken to him. I had ignored him. He called a lot. And texted. He missed me. I didn't miss him. I missed the kindness and affection. But I didn't miss him. I had decided to break things off. I was too selfish and self-centered and STUPID to carry things any further.

But like a weak little girl, whilst trapped in the Denver airport I answered his phone call. I vented and told him that I was tired. Homesick. Missed my little boy. He sympathized and said nice things to me. I caved. I spoke with him several more times. And then when I finally got to Tulsa at 1 a.m. I called him. I guess I wanted to hear his voice again. I bitched and moaned about not going to the grocery store and not having stuff like pull ups and chocolate milk and food for Harry, and that all I wanted to do the next day was lay around in my jammies and cuddle with Harry and didn't want to have to go to the grocery store. I had been working 16 hour days for 7 days. I was exhausted to say the least. I fell asleep whilst talking to him.

At 7 a.m. Mark (Harry's dad - back when Harry's dad actually saw his son) called and said he was bringing Harrison home. I was elated. I couldn't wait to have mommy and son time.

Here is where things get really mean ... this is where I change from being the sweet, kind, loving brain tumor girl you all love, into the mean, rotten, shit-head, jerky, self-centered, pompous asshole you've never seen.

If you know me well, you know that I hate being blindsided. I hate being interrupted. I hate having my plans changed. I hate unexpected things. Don't really care much for surprises.

So, just after I got off the phone with Mark my doorbell rang. I thought to myself, wow, that was fast!

I went to the door in panties and a t-shirt and when I opened it I discovered that it wasn't Mark and Harrison at all, but it was J. What the FUCK!?!?! He was all smiley and excited to see me. I must have looked like the devil. He was standing on my porch with bags of groceries, my favorite coffee in one hand and a mini pumpkin for Harry in the other. He had driven all night from his home just to bring me the things I needed, as well as some surprises.

Now, if this were a romantic comedy, the girl would have been all "Oh my god, you are so sweet!" And she would have jumped into his arms and they would have kissed and then gotten married. But this wasn't a movie. I was tired. And my ankles and feet were swollen and I was wearing great big giant white granny panties.

All I wanted to do was see my son. 

I must have screamed. I must have said some horrible things in that split second after seeing him.

His smile went to a sad frown, with his eyes turning instantly to tears. 

He said, "Can't I just bring in the groceries? I bought pull ups for Harry. And chocolate milk. I was going to make pancakes and bacon for breakfast and chicken fried steak for lunch so you and Harry could cuddle all day and you wouldn't have to lift a finger or get out."

"J&(#^(," I yelled! "You can't be here. My son will be here any minute! You have to leave."

"But I drove all night."

"I don't care! You have to leave."

He brought in the groceries and surprises (I won't go into all the things he brought, but there was foot lotion, if that's any inclination to what an amazing man he was.).

And just before I made him leave he looked at me. I looked at him. I gave him a hug and put my ear against his chest. His heart was beating so fast. He was so sad. I was so mean. I remember listening to his fast heart for a few seconds before I pulled away. Then I pushed him away. And he left. That was the last time I ever saw him.

Over the years I thought about him. During break ups with other guys I would think about J. I mean, I really have thought a lot about the situation. What was my hang up, really? I don't know. He was a really good boyfriend. So thoughtful. So considerate. So amazing. I thought about that over the years. I tried e-mailing. I tried searching for him. I think he used to call and hang up at first. But for the past year I hadn't really tried looking for him.

Until last week.

That's when I found out.

He got married a few years ago. To a really beautiful woman.

And on November 2, 2010 he died.

Monday, March 21, 2011

Sad stuff. Happy stuff.

Years ago, before Harrison was created, I watched a movie with my then-husband Mark. It starred a few of my favorite people — Mark Ruffalo (who incidentally has weathered an acoustic neuroma brain tumor), Amanda Plummer and Debbie Harry. The movie made both of us cry. It was called "My Life Without Me." It's about a young mom who finds out she has terminal cancer and vows not to tell anyone. Rather she wants to make plans. She doesn't want to live the rest of her short life making her children and husband sad. So she makes a list of things she wants to do before she dies. On that list is to kiss her children as much as possible, have an affair, smoke and drink, find her husband a new wife, etc.

My Life Without Me

After Mark and I watched the movie we were sad, but we had a discussion. We agreed that if it happened to either of us we would want to know. So we vowed to tell each other. Then we talked about if we had kids, would I want to find a new wife and mommy for the family. And vice versa. It was something we never agreed on, but discussed a lot. And we figured, well, we will probably never be in that sad situation anyway.

I'm feeling rather sad today. I am not sure why. Because generally I am very upbeat and happy. I have lots going for me. And I was very busy at work today. So all that's good. And the best thing of all, I have a benign brain tumor — not terminal. But the fact that it's serious surgery still scares me. A lot.

I've given lots of thought to who I want to raise Harrison if something horrible happens. My dear mother is very sick and currently in a year long chemo-type treatment. She isn't healthy enough to be a parent to my little boy. I'd always thought that my best friend of 30+ years, Alicia, would be my child's caregiver if something were to happen. But she has two children of her own, a demanding job and oodles of step children. Seriously, oodles — she married a Catholic guy.

I know one things is for sure, I want Harrison to see his small family and be part of their lives. I also want him to spend time with our friends whom he has come to love and trust. So, ultimately I have decided on Emily Elkins. I've known Emily for a few years, but we have only become close within the past year. Crazy, I know. Crazy that I would trust her with the one and only person I love more than life itself. My life. My Harrison. But I do. She's responsible, fun, kind, smart and all the things that would make a good provider, caregiver and second mother to Harrison. It makes me sad just typing it. And I have deemed Zachary Matthews as Harrison's godfather — now and forever. These are the two people I trust with my life, my son and the two people who know absolutely everything about me.

I first asked them officially when we had all been out drinking Four Loco (not joking) and wreaking havoc on Tulsa. You know how sometimes when you've had too much to drink you start getting teary and emotional? Well, I don't get like that often, because I hate tears and crying. But I did. I asked them. Which was a total buzz kill. Later, when we were in our right minds I asked again. It was confirmed. Still I ask. I want to make sure. I'm sure I will ask Emily again and again until the day of my surgery. She's made it official, too, by telling her mother. I think it's official.

And now it's in writing — although it's also in legal writing.

Emily will be keeping Harrison during my time in the hospital. And my girlfriends (MAN, WHAT AMAZING GIRLFRIENDS THEY ARE) will be taking turns watching him, loving on him, taking him to school, picking him up, spoiling him, etc. while I am out of commission. Gosh, I really love them!!!!

Where's Harry's dad? I don't know. We haven't heard from him, talked to him, seen him since January 17, just after Harry's 6th birthday party. He lives a mile and a half away. And he's alive and still living there. So, I don't know. I just keep telling Harry that his dad loves him loads, but isn't in his right mind right now. Clearly.

Speaking of him — Harry's dad ... he isn't the same man I met and fell in love with back in the 90s. Nope, not at all. I miss that man. In hindsight he changed right before we split up. I think it was partly a side affect from his dear grandmother's death. Also combined with serious mental issues that I know he suffers from. I wish that man would come back. The man I fell in love with was the smartest man I had ever met. The funniest, too. And most definitely the kindest. I don't recognize him anymore. And I haven't for a very long time.

Oh what I wouldn't do to have Mark circa 1999-2005 with me today. With me whilst I deal with all of this shit. He'd protect me. He'd reassure me. That Mark would have my back and that Mark would be an amazing father. RIP Mark 1999-2005.

Oh, enough about that.

Here is what prompted me to write today (aside from thinking about that super sad movie that you should all watch and weep to) ... surgery day.

I am scared to death thinking about surgery day. I will have to be heavily drugged to even get to the hospital. Which brings me to who I want to have take me to the hospital. Mom will definitely be there. But as much as I adore her and as much as I will probably be begging for her after my head gets sliced open (and I hopefully come to), I am not sure I want her to take me to the hospital. It's highly possible that I will want Alicia there. Maybe Emily. Maybe my aunt Julie. What I do know is that the person will have to be completely calm and loving in order for me to get through it. Someone who I will let see me cry (that list is short). Someone who loves me unconditionally. Oh jeez.

That's all.

Thursday, March 17, 2011

Wanna see it?

Back in September I showed you this:

That little white thing shaped like a candy corn is the schwannoma, the AN, the neuroma, the acoustic neuroma, or as I lovingly refer to it, the little bitch!

In September it was 9mm x 4mm.

I got another MRI a few weeks ago and it grew. I don't know it's size now because I didn't see the radiologist's report. I need to go pick up one at the hospital. All my doctor said was, "It has grown, let's take it out."

Here is the little bitch during the last MRI:

Wait, no, that's me and and the things that I usually have on my brain. Sorry.

You can tell that it has grown, but you can't really tell that much. But let me assure you, when the doc put the films on top of each other September's tumor fits inside of March's tumor. That little bastard! My tumor, not the doctor.

Looking at scans of my head/brain makes me a little sick to my stomach. I start worrying about all the little white masses, and all the things that are different about each side. Shouldn't each side look the same? I start looking at the brain stem area and get nauseous. In 6 weeks and 6 days they will be inside my head poking around on it.

All the black stuff is fluid. And no, I am not missing part of my brain, it's just partially covered by more fluid in certain areas. I guess. The gray stuff is matter. The white stuff I guess is cancer. Just kidding. I hope.

Honestly, I probably shouldn't even be looking at these. I certainly shouldn't be scrutinizing them. I'm no doctor.

Look how fat my cheeks are!

That is all.

Tuesday, March 15, 2011

It Might Get Real

More than six months ago when I heard the words, "You have a brain tumor," I wasn't prepared. Who is ever prepared to hear something like that? Today I am more prepared. Ready to get this sucker out. Ready to move forward. Ready to live life without thinking, "Oh, I have a brain tumor." It's nerve-wracking to say the least.

But I am getting it out. My surgery date is officially Wednesday, May 4, 2011. That also may be the day I die. Wouldn't that be sad? But just like I prepare to be off work, prepare to have Harrison looked after, prepare to be sick for a bit and have a foggy head, I must also prepare for the worst. Dying.

I haven't always been scared of dying. I used to worry about my nana dying. I prepared my whole life for her dying. Which is kinda sad that I always dreaded it. Guess what!? She did die. I wasn't prepared. It's been 10 years and I am still sad and think about her every day! Now I worry about my mom dying. I worry about my kid dying. I worry about people I love dying. I am a worrier. And I have an abnormal fixation on death and dying. I should probably get some sort of therapy. But I've gone 38 years with little therapy and I've done pretty well (especially given some of the things I've experienced), so why start now.

Dying isn't the only thing I am worried about during the days leading up to brain surgery. Oh MY GOD!!! Brain surgery! That sounds so horrific!

I worry about:

1. Leaving my son alone without a mother and father (that's right - his father has basically said adios - whatever, it's totally his loss ... Harry will be just fine. Digress).

2. Becoming disabled and nutty. I mean, they are chopping on my brain ... this is a genuine concern.

3. Having a spinal fluid leak. It's a real serious complication of the type of brain surgery I am having.

4. Worrying my friends and family.

5. Not being able to close my left eye.

6. Being off work, unpaid and not having money to pay my bills, buy food and pay stupid medical bills. I mean, what if I end up needing one of those fancy Temperpedic beds?

7. And finally I worry about ...

Wait for it ....

I worry about my surgeons screwing up and jacking up my facial nerve and ultimately ...

Wait for it ....

Looking like Mary Jo Buttafucco!!!!

I guess that bitch Amy Fisher shot her right in the facial nerve. But the surgery I am getting can also create this look. I am scared of this. I worry about it. Nearly as much as I worry about dying.

I guess it'd be better than looking like Joey Buttafucco.

I guess I should go ahead and have my stylist give me the Mary Jo.


Just yesterday a nice friend said, and I quote, (basically because this type of thing totally boosts my ego and I can come back and read it over and over and over and over [ad nauseam] when I have facial weakness and a frankenscar down my scalp): "I really like your brain and face. A lot."

Here are the positives (and believe it or not, I am really being quite positive — I just feel it necessary to add really obscene humor in order to stay positive [i.e. Mary Jo Buttafucco]):

1. The tumor will be gone after surgery.
2. It's small enough still (1 cm) to warrant a smaller hole in the sub-dermal fascia (hahahaha I totally made up that term, I think) under my skull. A larger tumor would mean the surgeons would have to make a bigger hole under my skull. Luckily, my hole will be small. Huh?
3.  I might recover and be able to go back to work within 3 weeks (give or take).
4. I have THE MOST AMAZING and supportive friends anyone in the entire universe could ask for. Seriously!
5. And the coolest positive of all!!!!! Doc is giving me a simultaneous surgery ... he is going to implant the totally kick ass and awesome Baha Implant!!!!! That means I can hear. Sure, I will have a wicked looking snap thing sticking out of my mastoid bone behind my ear. But I really don't care. I will be able to hear again. Now if that's not positive, I don't know what is.

Last week, Dr. Holly (my (yes, MINE) audiologist) gave me a Baha demo. AND she let me take the simulator home with me. I still have it. It's on a headband and not implanted into my head (obviously) yet. The real thing will be much better, but this simulator is wicked. I will truly have a bionic ear. I am very lucky.

Lookie at how small it is in the video above. Ignore my nail. And ignore the fact that I say that it's the "implant." The implant will be in my head. The thing in the video is the "device."

Here is Dr. Holly. She is very sweet.

I have so much to say - but I have seven weeks to say everything before I die. So, I will post more later. And will post more often leading up to my surgery date.

Thank you all for standing by me, reading and listening to me whinge and babble. I appreciate you.

Tonight my dear friend Sunny has organized a small gathering of my core friends to discuss my surgery, phone trees (that's such an old church lady term), schedules, care, etc.

I'm telling you ... my friends KICK LOADS AND LOADS OF ASS! So, thank you. Just know that when you are in need I will be right there by your side. And that's no joke!

Stay tuned! It might get loud!