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!

Wednesday, May 4, 2011

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.