Wednesday, July 31, 2013

Brain Boy: Days 15 and 16: Does this come with a matching robe?

The last couple of days, headgear has been uppermost on my mind.

Being the fashionista that I am, I've been trying different designs for a "brain wrap".  Yesterday, for example, I visited the neuro clinic to check out a design (left) that would actually stay on my head in the middle of the night. My last wrap wound up on the pillow.

You see, another practical benefit for the right apparel is that applied pressure and a stable bandage will hopefully stem the outpouring of internal brain fluid that has caused some pain and pressure inside my skull.  This is not necessarily the norm ... but not unusual after surgery to have swelling from internal fluid leaks. But in my case, the leaking has been a little problematic because it doesn't seem to want to slow down. Must be my active brain (or just plain big head).

The "hat" is the key... the sleeker the design the more it will restrict the flow and seal the leak. Unfortunately, stylish as it is ... last night, the same thing happened. The bandage crept up my head and landed on my pillow as well. In both cases, the swelling pushed it up and out.

So ... back to the clinic again today where I was fitted with a very interesting style (left). It looked like: Santa Clause meets Osama Bin Laden. I'm wearing it proudly tonight. It has it's own fancy ties that tighten when you need just the right pressure. When this is done I will have my very own torture chamber items ... worth at least $3.99 I would bet.

That's it for me ... so how was your day?

Monday, July 29, 2013

Brain Boy: Day 14: Did anyone get the number of that bus?

Minor setback.

I've been kidding about my forehead getting so big that it should give birth any day now.  Well ... it's gone past "term" and the doctor told me to come in to induce labor.

Translation: The fluid pressure has increased since surgery. Headaches and tenderness prevented me from sleeping through the night ... so Dr. Harry told me to come in.

He did a biopsy and then drained about a bathtub full of fluid (okay, I exaggerated ... A half bathtub). He then wrapped my head with two bandages which restricts the fluid as it comes back.

I wear this for a few days.

Seriously, still not feeling great. Hopefully I can get some relief ... But you have to admit, I finally have a great prop to show off.

Tony Soprano will love it!  

Saturday, July 27, 2013

Brain Boy Days 11 and 12 The Perks

I just started Season 5 of The Sopranos (yes ... I'm back at it. Even Debbie is into it now.) Just had a break in the action to change DVDs so I asked Debbie if she would make me lunch ... "Honey, can you fix me something?"

Debbie answered, "Okay ... give me a minute. I've got to make a few calls."

"What do have to make calls for now? Never mind ... F**k it, Carmela."

"Did you just call me Carmela ... TONY?"  

I'm not sure I will be allowed to see Season 6.


This recovery period has perks. Food for instance comes to the house by the truckload thanks to our wonderful friends and family. My boss, Judy sent me a big box of delicious cookies, friends at All Children's sent me a huge box of fruit, some of my staff sent me gluten free cookies, pot roasts, pasta, Kevin and Kathy sent some pirate stuff to go with my eyepatch. Lee made stew, Dennie made soup ...

... and my brother in law Mark brought me every Ben and Jerry's/ Gelato/ Twinkie/ Yogurt container in the store.

Alissa sent some cool books for me to read and Josh spent the night making me dinner while Debbie had an open house (I think she did ... she probably bribed Josh to give her a break from me, Tony Soprano.) Doug and Cheri delivered lunch from Hooters.

Go and figure. I've lost over 15 pounds in the two weeks after surgery. (Although I wouldn't advise this diet for anyone who has any sense).

Even Dr. Harry said I was looking skinnier.

"That's a good thing isn't it?" I asked.

"Not for you."

"I thought you wanted me to lose weight."

"You don't want to get too skinny."

"Bad for my healing process."

"No ... bad for your business. People don't want to give money to skinny development officers. They don't trust them ... too healthy looking. They like fat people."

Geez ... everyone's a comedian.

Thursday, July 25, 2013

Brain Boy Days 8,9 and 10

I took Tuesday and Wednesday off.

My head thought it was a good idea. Apparently, my head has a mind of its own. (Did I really just say that?) I didn't physically go anywhere on Tuesday ... but amusement park rides filled my dreams ... not the fun kind. The ones with scary clown faces and roller coasters that aren't anchored to the tracks.

Yesterday was doctor's day ... the day my stitches were coming out. Well ... I thought they were. I dressed for my "coming out" party. Even shaved ... and put on a nice shirt for the first time in 10 days.

Dr. Harry checked out my head. "Let's wait another week before we take out the staples. Fluid is leaking ... spinal fluid ... it needs more time to dry out and heal. This happens in the healing process. Your head will probably get even bigger."

"So ... " I calmly asked as I pictured myself picking up pieces of my brain from the floor and folding them in my scalp. " ... is this a bad thing ... you know fluid leaking and stuff ... Are you concerned Harry? I mean ... infection? I thought I was doing okay ..."

"You are. As Schwannoma repair goes ... you've got a solid rate of progress."

"Okay ... okay ... I'm sorry ... just these new sensations ... can't feel my face ... my brains leaking out ... too many questions, huh?"

Harry reached over and grabbed my arm. "Don't apologize. Ever. You don't have to feel bad about anything. I don't. That's my job as a neurosurgeon. Let me tell you a story. One day I was sitting in my office and one of my mentors came in to see me. He asked me what was wrong. I unloaded ... my first patient this morning didn't make it, the second had a stroke and I've got a hellacious schedule this afternoon...

Harry sat back.

" ... he looked at me and said, 'Listen to me. The guy in the next room doesn't give a shit. He's just been sitting there thinking that he is the only thing on your mind today, As far as he knows ... you just got here and he could care less that you had all this other stuff going on. Now get in there and suck it up. He's your most important case today. Good talk'."    

I shook his hand.

Harry said, "So was there anything else you wanted to talk about."

I looked him in the eye. "Just one more thing. Tonight when my head is the size of the front end of a Buick and I start to give birth ... can I call the baby Harry?"

Monday, July 22, 2013

Brain Boy Day 7

Debbie took away the Soparanos Tape today ... I think it was the last 3 hours of .... "I'm gonna break your f***ing kneecaps you f***ing sorry m*****f***er." Or maybe it was the last fourteen bloody death scenes.

Anyway ... I opened Mel Brooks an few minutes ago ... Silent Movie might work. 

Sunday, July 21, 2013

Brain Boy Day 6

It's Sunday ... end of week one for me.

I got two packages that just made my day. My buddy Mike sent me the Mel Brooks movie collection and Steve and Colleen dropped off the Sopranos series (all 6 seasons). Since I never saw the Sopranos ... I decided to watch a few episodes. I'm hooked.

Uncle Junior,  Big Pussy, Paulie "Walnuts",  Silvio, Tony, Carmela, Meadow ...  what great names and what a great cast. Just finished Season 1. Okay ... sure you probably watched it 14 years ago with everyone else. I'm just catching up. Only 60 more shows to go ... Uh oh Big Pussy just came back to town. Gotta go.

Later ....

Saturday, July 20, 2013

Brain Boy Day 5

My lower front teeth woke up yesterday afternoon.

I was happy to hear from them, but I'm not sure they felt the same way. They must have been having nightmares while they were out because they woke up angry at my jaw.

Thank heavens for painkillers. Today, my teeth seem to like me again.

Now if only I can get the rest of the right side of my head to wake up with a better attitude, life would be sweeter.  

For now... my forehead, my right eye and the right side of my nose still have no feeling. But I know I have to be patient ... I just went 20 rounds with Ali.

So I started to imagine what I could do with this numbness "talent" in the meantime:

1. Stupid Bar Tricks.  Picture this ... walk into a bar and slam a few drinks down. Look down the bar at the biggest and meanest dude in the place and tell him that you bet you can jam a fork in your forehead without flinching. Better still ... he can jam it in your head ... or ... better still ... take bets that you will buy anybody else a drink if you fail ... but if you do they owe you a hundred bucks apiece.

2. Audition for "I should have had a V8" commercial. With the promise of unlimited retakes  and the promise of being the permanent stand-in might be profitable.

3.  Tell someone off that you always wanted to without the fear of retribution.

No one scares you.

4. Wait a minute ... she might.


Time to sleep again ... later!

Friday, July 19, 2013

Brain Boy Day 4

Day 4 after surgery and I thought I'd attempt a post. If I start to drift zzzzzzz zzzzzzzz zzzzzz zzzzzzz zzzzzzz just hit the computer and I'll wake up. 

So here's the timeline (it's a work habit, huh?):

5:15 AM Arrive at TGH for admissions and surgical pre-op waiting area. Five people asked me my name, DOB and what I was having done. (didn't they know?)

7:03 AM Wheeled into actual pre-op. Lot of activity here ... I remember most of it ... TGH is a teaching hospital so there were about 8 nurses helping me, a nurse anesthetist who put my first IV line in (funny guy ... enjoyed his job. Nice to see), a surgical nurse that came by to say hello ... she remembered me from my days at All Children's ... then it got busy. Two neurosurgical techs put monitoring probes on my feet and my hands, four neurosurgical residents (I swear) took patient histories, somebody (I think another resident drew an arrow on my head. HE knew what was happening), I know there were more ... but the actual anesthesiologist came in last to tell me all about the good drugs I was getting. That's what I wanted to hear. EVERY ONE of those people I mentioned asked me my name and DOB and asked what I was having done. (They didn't want to cut the wrong head off)   

7:30 AM Into surgery. I just remember the ride.

3:00PM Surgery lasted for almost 8 hours and when it ended I was wheeled into Recovery. Here's where it gets very fuzzy for me. Debbie came in while they were waking me up and sister Keli was there. Apparently, I was not happy to find out that my catheter was not removed before I woke up and I wanted Keli to know about it and to check it out (also to check out its contents for some ungodly reason). Debbie kept telling the nurses that I really don't have a "potty" mouth. They told her that they have heard it all ... much worse than me to which I replied ... " I do have a f***ing potty mouth ... but I love you guys cause you gave me great f***ing drugs." 

I have no other earthly idea what else I said on the ride to the Neuro ICU ... except that I did talk to the cool dude who transported me and asked him where he was playing. 


... sorry where was I? Oh yeah Neuro Intensive Care Unit.  Still feeling the glow of the anesthesia drugs I talked to Dr. van Loveren who is the greatest doctor in the world. I told him that when he came in to talk to me and ask how I was doing.  He told me this later:  The surgery was a little tougher than he thought so they had to do more ... longer ... and brought in another neurosurgeon to help out. I had the BEST (... he got the WHOLE tumor by the way). He did tell me that "I would call him an a**hole for the next few weeks because I'll have a killer headache and feel like crap." I told him "You were always an a**hole (his three residents loved hearing that.) But you're my favorite a**hole ... love ya man." Feeling NO Pain!

I am doing well ... left the hospital on day three ... now at home and trying to heal. Never got the "haircut" ... Harry cut right through my hairline ... now closed by a bunch of staples. Double vision causes me to wear a patch and complete numbness across the right side of my face, my eye and nose is a little disconcerting (kinda like wearing the skin coat in Silence of the Lambs). Most will disappear hopefully over the coming weeks but will have to wait and see what nerve irritation is more permanent. The good news is ... I'm alive, in no real pain,  have no paralysis and I can hopefully lose some weight. since the taste nerves on the right side are numb too. 

But ... Tomorrow I'll give the reasons why feeling numb is pretty cool. 

Thursday, July 18, 2013

Brain Boy

Thank you all ... friends and family ... for all your wonderful messages and prayers. Special thanks to Dr. Harry van Loveren who is the most incredible neurosurgeon in the world (true), my fantastic kids Josh, Alissa (who came in from DC) and Nikki (Dr. Preggers who came in from Savannah to be with me) and my incredible wife Debbie who has done everything for me including wearing a buzzer (not really ... but a good idea huh?)

More special thanks to my terrific family for being there for Debbie and me while I was in surgery for 8 hours! Steve, Dennie, Tom and Keli who even came in to look at my catheter in recovery (a story for another day).

I love you all ... wish I could thank all personally.  I promise to blog all the gory details soon ... but I tend to doze off now and then from the pain zzzzzzzzzzzzzzzzzzzzzzzzzzzz killers.    

Friday, July 12, 2013

Son of Sammy

Thinking about projects I want to do over the coming weeks when I'm recuperating from surgery. One of the things I always wanted to do was a screenplay about Sammy.

So I wrote the opening scene ... tell me what you think.



SAMMY is sitting outside in a wheelchair at the entrance to the Star of David nursing home. He is staring into space with his hand resting on his chin. Slumped in his chair, he looks skinny and drawn. The nurse comes out to check on him.

Mr. Sam ... are you sure there is nothing I can get for you.

SAMMY continues to stare blankly into space.

Mr. Sam? MR. SAM?

(he looks at her)

I said ... are you sure there’s nothing I can get for you?

What? I’m wearing my shoe.

No ... no ... I said: What can I do for you?

A few what?

Lawd Mr. Sam ... you forgot to put in your hearing aids again, huh?

I wish you would speak slower. I don’t know what you mean about fried eggs again.

Nurse Lola laughs and pats him on his bony shoulder. Sammy looks disgusted and shakes his head.

Okay ... just call if you need me. I’m right inside.

A big white SUV pulls up to the driveway in front of Sammy and BARRY LEVINE jumps out of the driver’s seat. He slips behind Sammy’s wheelchair and unlocks the brakes.

You said 12:00.

... and a good morning to you too, Dad. It’s actually 12:05. I had a 5 minute delay.

What play? I thought we were going to lunch.

Barry starts to correct him when Nurse Lola comes out. 

(to Barry)
Mr. Levine ... good to see you.

Hi Lola. You too ... Just gonna take the old bird to get a
(looking at SAMMY)

(Balancing himself in the car as Barry guides him in)
No need to scream. I heard what you said.

Barry PUTS the wheelchair in the back and settles behind the wheel. Sammy turns to him.


So ... what’s this play about?

We aren’t going to see a play today We’re going to lunch at the deli.

That’s what I thought we were gonna do ... lunch.

(to himself ... aloud)
Figured you’d hear that.

Barry looks over at Sammy as he stares out the window. Crumpled white windbreaker with ketchup stains on the sleeve, a striped polo shirt and wool tweed pants that look about two sizes too big. His shoes were the same ones he wore for at least the last 30 years ... bone colored loafers with a velcro strap across the instep.   

Dad, it’s 90 degrees outside. Aren’t you hot with the jacket amd wool pants?

He continues to stare out the window.

That was Lola, you know.

Yes. Lola ... your nurse. I’ve met her before.

I’ll have to introduce you when we get back.

(he starts to correct him but thinks better of it.)
Sure ... that would be great.

Sunday, July 7, 2013

My grandfather always said," Don't watch your money, watch your health." So one day I was watching my health and someone stole my money. It was my grandfather.

This is my month for doctors.

On Friday, I visited my new Gastroenterologist ... Jackie Mason!

His name tag reads: Dr. Haim Pinkas, but he can't fool me. It was Jackie Mason. I was set to get an endoscopy from him when he told me, "You know ... you don't really need to be knocked out for dis procedure."

"Really? Do you do these without anesthesia?"

"Only on myself. Colonoscopies too. It's like playing a big video game."

"Well, I think I would rather be knocked out."

"Okay boychik ... ve do it your way." He looked at Debbie who was trying not to laugh. "Is dis your vife?"

"Yes ... this is Debbie."

"Nice to meet you. You a nice slim goil ... vat you doin with dis vun?"

"Dr. Pinkas ... " I spoke up. "I'm sitting right here."

"Not if you don't lose some veight."

Pinkas could easily make it as a stand up comic. He looks EXACTLY like Jackie Mason ... except older ... like 100. He did my procedure (knocked me out thank heavens but continued to talk even when I was passing out). I was a little afraid that he wouldn't be able to hold his hand steady enough.

Note: My throat was sore for the rest of the day ... but at least he didn't leave any instruments in my stomach. At least none I know of.

Just a few more tests before my big surgery. Gotta get a gallbladder scan and an audiology test.

I wonder if Carl Reiner and Mel Brooks will consult.

Saturday, July 6, 2013

Heady Stuff

"You should get your head examined!"

That's what Dr. van Loveren tells me about every six months. It might be because I drive him crazy with questions about my puny brain ... or it might be because he's really interested in the results. My last MRI was not the picture I expected.

The schwannoma (I Was Born Very Young: Cyber Memories / Oct 28, 2011) that I wrote about in 2010 ... had grown back.

It is still benign and still in the same place it was when it was zapped with the cyberknife. I was prepared for this because I knew this would happen some day ... but from what Harry had told me, it would be at least 20 years or so.

"So what should I do?"

Harry studied the films. "Well, you could wait a few more years. It's still growing slowly."


"No ... more like 4-5." He looked at me and leaned across his desk. "I'd say the sooner we get this out the better."

That was a few months ago. When I picked my chin off the ground, scheduled the surgery and reviewed my options ... I felt much better. This tumor that I have is not malignant. It's not going to kill me ... it sits on the brain amid a facial nerve or two and is not the easiest thing to remove (from what I gathered) but Harry is one of the best.

I know he's one of the best because I went for a second opinion. Deb and I travelled to Johns Hopkins to speak to the Chief of Neurosurgery ... waited for about 5 hours. He studied my films,

"So ... you're Harry van Loveren patient in Tampa."

I nodded my head.

"He told me all about you."

"He did?"

"Yep ... saw him a few weeks ago."

"You know him?"

"Sure do ... he trained me in Cincinnati. Best there is. If I had to get this done, I'd go to Harry." He smiled.

That's all I needed to know. I told Harry about my trip and he said the same thing. "Told you I was pretty good." I'm scheduled for July 15 ... feeling very confident.

You know, there are some benefits to awaiting brain surgery. Sympathy ... for one thing. I've won a lot of arguments and can easily get my way lately ... all I have to do is say:

"Excuse me ... I'm gonna have brain surgery!" (It shortened our wait at the movie theater.)

Ballad of the Big Prostate

Here’s a little country tune I wrote just yesterday to commemorate a dark day in my history. I don’t have a tune but realized you can use an...