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.
8. My friends are the VERY BEST IN THE WHOLE WIDE UNIVERSE.
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!

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.

Dylan

Zachary

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.

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!

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!

As the hours and minutes wind down ...

It's 1:50 a.m. the day of my brain surgery. Not surprisingly, I can't sleep. But I will. Rather, I will lay in bed and watch my son sleep.

It's happened so quickly. Just weeks ago I was told that I was having brain surgery. Hell, just 9 months ago I was told I have a brain tumor.

Tumorrow (yes, I am trying to be funny at 2 a.m.), barring any complications, I will be tumor free. That's the exciting part.

My friends had a HUGE benefit for me on Saturday. I am too tired to get completely into it. But it was rad! Friends from near and far have donated and attended the benefit (er ... super wicked awesome party). I was showered with gifts (chocolate, flowers, wine, frilly things, dances, etc.) and I was most definitely showered with all sorts of love.

I have been in an overwhelmed daze since then.

But in a mere 3 hours Emily will pull up and Harry and I will leave with her. She'll take us to the hospital.

I will spend my last minutes before brain surgery with my son, my mom, Emily and Sammi.

I want to cry. But then again, I want to jump for joy at the idea of this whole thing being over soon.

I'm scared, even though I know I am in good hands. Even though mounds and mounds and tons and tons of good thoughts are out there for me. Hundreds of prayers. Mountains of well wishers. A team of highly experienced medical professionals. Yet, I am still anxious and scared.

And I already miss my son.

Really, as much as I love my friends and family, my son is the only reason I am doing this. I am doing this to literally save my life. Am I scared I will lose my life (or quality of life) doing so? Of course.

But I can't be. I have a little boy to live for. I have to do this. I must.

I didn't get everything I wanted to get done, done. My work load at the office is all squared away. But my home is a wreck. It's just so frazzled and untidy at the moment. My housekeeper (who incidentally will be donating her services whilst I am out of work) will be here whilst I am in the hospital, but I just haven't had the time (or notion, really) to take care of some things.

I am fully relying on my friends to continue to help me in the endeavor, and I will trust I will come home to a perfectly comfortable recovery haven.

I can't begin to name all the people who have come through for me. You all know who you are - and so do I. That's all that matters. For now.

I am going to go suffocate my son like a mama Panda Bear does. Not really, because that would be horrible, but I am definitely going to go snuggle with him. Even though he's been asleep for hours.

The next time I will be writing will be when I have the energy after surgery. My goal is to write again very very very soon.

Sammi and Emily will be making updates on the Saying Goodbye To Joey's Brain Tumor facebook group.

Ancora Imparo!

P.S. I am sorry if you have called, texted or facebooked today and I haven't responded. Like I said, I have been overwhelmed (in a good way) with well wishes. I will respond to all of you in due course.

Tick Tock Tick Tock

Hi friends! In two weeks from today I very well may be tumor free. Perhaps I'll still be in surgery. Nevertheless, two weeks from today is when my life will drastically change.

I'm nervous. Excited. Anxious. Scared. Freaked. Ready.

I am ready to get it out and start moving forward.

I wouldn't be ready if it weren't for my awesome friends.

Growing up I always internalized things (still do for the most part) and I never really shared much with people. Although I was always VERY social. My overall friend circle was always massive, but really the good friends I trusted and loved wholeheartedly I could count on three fingers.

My grandmother and Alicia were always part of that count. I still count Alicia, but I have added my mother. My nana died in 2001. I sure miss her a lot.

My point is, I had lots of superficial friends and acquaintances. Even when I met my son's father, my second ex-husband, I had a handful of good friends and masses of superficial ones.

But that has changed since divorcing Mark. After I split up from him I decided that I needed new friends. Sure I would keep the friends we made together, but I needed to branch out and make my own - rebuild, if you will.

I did just that. But the difference now, as opposed to when I was younger, is that there are masses of friends. And they aren't all superficial. They are real. I know that now. Sure, I have my core group of friends - the ones who know everything about me (all the bad and all the good). Those friends are my lifeblood — Zachary, Emily, Sammi, Tim, Deanna, Alicia. But I also have completely amazing friends who I have come to love and cherish and whom I want to tell it all to (and I will). Friends who have been here for me all along over the last few years — Monika, Sunny, Bruce, Jennifer, Mary, Western. I won't name everyone. But if you are a friend I adore - you will know it. Even my latest and newest friends I feel close to — all the Sara/Sarahs, my new blog friends, my friends of friends, my friends I only see sometimes. I seriously can't name you all, but I would if I weren't so lazy. Just know that if I have communicated with you over the phone, in person, online, and we have shared lovey thoughts, kindness and intimate details, you are counted. I count you as my very good friend. And I am so thankful to have you in my life.

I mean, I even feel close to my sometimes boyfriend's ex-wife, Catherine. She is the bee's knees and I wish I lived closer to her. I don't know if I have just become more lovable and likable or if I just really like to have friends. Whatever it is, it warms my heart and makes me happy to know that I have so many people to love and that so many people love me (and Harry). Thank you all - I mean that from the bottom of my heart. And the top and middle of my heart, too. I really do appreciate all the kindness, support and good energy.

I truly think I am the luckiest girl in the world - or at least in the U.S.

My friends set up a few pages online. First is the facebook page - if you are on facebook, "like" the page and go there for updates, etc. during my surgery and recovery:

Saying Goodbye to Joey's Brain Tumor

And also there is a donation site if you feel like donating some greenbacks towards my expenses during my time off work/medical bills. I never in a million years thought I would be in the position to ask for this type of help. It's humbling and I greatly appreciate the steps my friends are taking to help me out. Everyone who donates or helps in any way will get a personalized thank you card I will send to you during my recovery - you may even get a card from my hospital room, written in a morphine-induced state.

Help Pay Off Joey's Brain Tumor

My friends are hosting a benefit/fundraiser at my BFF's bar, The Cellar Dweller on Saturday, April 30. I hope you will come. Because the Gorgeous Ilsa the Wolf will be there doing her famous fan dance. Party starts at 8 and show starts at 9. Squeeeeeeeeeee

This week on Friday I have my pre-op with the neurosurgeon. Next week is my hospital pre-op. I imagine it will start becoming very real during that appointment.

I'll update more and more and more as we get closer.

Thank you for reading and going on this journey with me. I really COULD NOT do it without you.

xoxoxoxoxooxoxoxooxoxxoxo

Lists and Things

I have 19 days to go until my head gets sliced open during translabyrinthine brain surgery. Say that 6 times fast.

My surgery is scheduled for Wednesday, May 4 at St. Francis Hospital.

Here is how it's going down:


1. Doctors will knock me out.
2. They will slice open my scalp, behind my left ear.
3. They will remove my mastoid bone (not for good, I don't think - I hope they give it back).
4. And totally remove my inner ear, forever.
5. They will scoot some stuff over and then get to work on removing the tumor from my 8th cranial nerve.
6. Then they will, I guess, put back my mastoid bone and close me up. But first the doctors will slice open my belly and scoop out some fat to use during the stitching/stapling process. I guess my scalp will be stretched open for a number of hours (from 6 to 20 hours) and so they need to fill it in with some fat, because it will be stretched out. Ugh.
7. Then they will cut another hole in my scalp over my mastoid bone and insert a small titanium implant that will transfer sound vibrations to the functional cochlea. Yes, I'm very cool.
I am not sure how long I will be in the hospital, but probably for about a week. Then I will maybe be recovering and off work for about a month.

I don't know all the details yet because I haven't had the surgery. Everyone tolerates it differently. I am very positive that I will jump right out of bed 4 hours after brain surgery and be released to go home.

My new famous friend Marla told me yesterday to, "plan for all outcomes, and expect the best!" She is allowed to tell me positive stuff like that because she had the exact same surgery. And she is still gorgeous, awesome and fine. So, I trust her.

But chances are, realistically, I will be in ICU for a few days. Then in the hospital for a few more. Then home recovering for about three. Then I will be back at work. That's my plan.

So, I am worried about some things. Here is a list of a few things I am worried about:

1. What if my visitors see my butt?

I mean, hospital gowns aren't known to cover you up well. And what if a visitor sees my boob/s or, shudder, my va-jay? I'll be mortified.

I asked Zach last night what he'd do if he saw my butt and he had some smart-assed remark. Then I told him that he'd probably want to marry me. So, he isn't an accurate example. Bottom line (pun unintended), I don't want ANYONE to see my butt.

2. What if my lips get chapped during surgery? I hate chapped lips. And being in surgery for up to 20 hours means that I won't be applying and reapplying chapstick on an every-15-minute basis. Do you think I can put a big slab of vaseline on my lips before I go in and that'll take care of it?

3. What if I die? This is the only thing I am truly worried about. I mean, who wouldn't be? But I have 19 days left — I HAVE to be positive at this point. Positive that I won't die.

4. What if I get out of surgery and recover and never have sex again because of some tragic flaw in surgery? Like what if I am rendered uncoitusable (yes, that's a totally made up word) because I am no longer attractive (not that I am currently Miss Universe). But really, what if?

5. What if I wake up from surgery and look like this?

6. I'm worried that I will all of the sudden wake up in the middle of brain surgery and be like WHAT THE FUCK!?! Man, that would suck.

7. I am worried that I am going to make my friends and family worry during surgery. I don't want them to worry. I want them to all just hang out and wait for me to come out of surgery just fine.

MUST BE POSITIVE, JOEY!

OK, what else?

The last few weeks have been pretty good. I've spent quality time with my little lad and my friends and family. I've gotten TONS of stuff done at work and home.

Blah. There isn't much more to report. Well, there is, but I have all the sudden lost my momentum. It must be this stupid brain tumor.

Oh, yeah, I think I need a little mascot, if you will, to accompany me into the surgery room. Perhaps a stuffed animal. Is that babyish? Probably.

That's all for now.

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.

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.

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.

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.

Bah.

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!

Spring or something like it ...

Spring is in the air. I love it. I always have. It's different than my other favorite season — fall. Spring is like a renewal of spirit. Fall is more of a hunker down and hibernate vibe.

Nevertheless, I smell and feel spring upon us. And it's good.

My doctor's nurse called me this week. I have my second follow up MRI next Thursday. The first one I had, which diagnosed the tumor, was in September. I go to my doctor on March 9 to compare the two MRIs side-by-side to see how the tumor has grown.

Sometimes I have dreams that it has rapidly grown to a massive size. And sometimes during my awake hours I psych myself out and imagine it growing.

Lately my symptoms are the same. Headaches (these could be stress related), balance issues, no hearing, tinnitus. However, there are a few new symptoms. This is gross, but I have been drooling at night. I've never been a night drooler. But I wake up and find that it's happening. I worry that the tumor is starting to affect my facial nerve. Also, the left side of my head gets numb during the day and whilst I sleep — that's a new symptom. The scariest new symptom of all is my speech. It isn't necessarily slurred, but oftentimes I struggle to say the right words. Much like Serene Branson as seen here:

It's not at all funny. But sorta funny. And I mess up like Ricky in Trailer Park Boys. More often, this is what it's like. For instance, I said, "Bump up my game" yesterday instead of "Step up my game."

But whatever.

I am pretty sure that my doctor is going to want to schedule surgery after my appointment on the 9th of March.

Here is a list. Because I love lists.

1. Harry is taken care of, I believe. My dear friend Emily has agreed to play mommy whilst I am in the hospital. I trust her completely. And Harry loves her. And Emily says that he can sleep in bed with her and that makes me feel more comfortable. I won't have to worry about him because I know that Emily will baby my baby.

2. I'm trying to wrap up production of my April magazine by the time my surgery rolls around. This shouldn't be a problem. And I will try to get a head start on the next one.

3. My amazing housekeeper has offered to come take care of the house whilst I am in recovery. So, I don't have to worry about cleaning house or tidying up.

4. I have awesome friends who want to organize a meal program during my recovery, so I don't have to cook. This will be excellent.

5. My friends rule.

6. I have written a manual to my life which states passwords, details, life insurance, final wishes, etc. And I've even written my obituary. I am so morbid, I know. But c'mon.

So, I think my affairs will be in order. However, I am not sure what I am going to do about paying medical bills, rent and other bills whilst I am off work without pay. Perhaps I will give myself a benefit. Or start a paypal account and ask for donations to help cover expenses in my time of need. For each donation level I will offer something awesome. For instance:

Donate $50 or below and you will receive a photo of my gnarly tumor during surgery.

$51-$200 the donor will receive a photo of the gnarly tumor, a postcard mailed to them from my hospital room with slobber on it.

$201-$500 the donor will receive the photo, the postcard and a video of doctors removing my stitches.

I haven't worked out the details, but you get the drift.

Hahahaa

So .... Neal's gf, Jamie, had her surgery 2.5 weeks ago. The tumor was 5cm and the surgery was about 14 hours long. She was in the hospital for 1.5 weeks and is doing well at home. She has a few minor pains, but so far, so good.

I hope to be back to work within two weeks. Seriously, that's my goal. I have to work.

On to random stuff:

I'm stressed beyond belief - not because I have a brain tumor, but because my son's father sucks ass. I won't write too much about it because I'm too dignified to make myself into a victim (thanks Zach), but right now it sucks. Whilst driving home last night this is what Harrison said to me, since he hasn't seen or heard from his father in a month:

"Mom, I want a new dad. My dad doesn't care about me anymore. And he doesn't love me."

Do you know how much that breaks a mother's heart?

So, I guess I am going to have to go to the Dad Store. After I go to the Big Brother Store, because he also wants one of those.

I digress.

Work is good. Friends are good. Being a mommy is good. Family is good. Spring is good. Life is good.

Ancora Imparo.