Thursday, August 29, 2013

Brain Boy: Day ... I can't remember ... I lost track: Sammy Does the Rays

Sammy called me at 7 AM. It went to Voice Mail.

"Joel, I need Josh's number ... call me as soon as possible because I am going to the Rays game with Menorah Manor and want to take him."

I called him back about a half hour later.

"Dad? ... Dad? ... Dad? ... Dad? ... Dad? Well ... I guess you don't hear me..."

Just before I hung up ... "Hello?"

"Dad?"

"Yes ... Joel is there something wrong with your phone?"

" No. Do you do that on purpose?"

"Listen Joel ... I need Josh's number. I can't find the damned thing on my memory phone thing."

"Okay. Are you ready?"

"Yes."

"555"

"5...5...5"

"346"

"3 ...4...6"

"!234"

"1 ...2...3... dammit. I need a pencil."

"You haven't written this down?"

"No ... wait."

"No ... no ... Dad. I've got a better idea. I will call him and have him call you."

"What? You will call me?"

"No. HANG UP NOW AND JOSH WILL CALL YOU."

"Okay ... you don't have to scream."

Debbie and I went to the Rays game and met Sammy there. Josh had school and couldn't make it. He called Sammy and left him that message. We only stayed for a few innings but knew how excited he was to be there.

As soon as we saw Sammy, he said, "Hey. Good to see you. I was telling everyone that I couldn't get in touch with Josh. I wish he would have come here."

"Dad. We talked about that. You didn't even have his number and he called you to tell you he was in class ..."

"So. Debbie can you get me something to eat?"

Debbie answered, "Sure, Sammy. What do you want?"

"A hamburger."

"Can you eat a hamburger without your teeth?"

"Of course I can eat it! I just can't chew it! But maybe I'll get something else ... do they have fried chicken?"

"What? Sammy ..."

"How much is a hamburger?"

"About $10"

"Oh my God! Who makes them?"

"I don't know it's at the concession stand."

Debbie got him a cup of ice cream instead. He had a great time.

Saturday, August 24, 2013

Brain Boy: Day 37: Week Five Scorecard

It's the end of my fifth week of "rehab". I'm using a new measurement tool to determine how much progress I've made.

Here's my Week 5 Scorecard:

1. Trips to TGH for surgery .... Score: 0
Feeling good about this one. I was 3 for 4 now I am officially 3 for 5! I was starting to thing that I was a "things that can go wrong" teaching instrument for the residents.

2. Numbness on right side of the face .... Score: 98%
Yesterday I felt two of my teeth (that counts for a 2% decrease) Okay ... I'm desperate here. I know it's gonna take some time to get feeling back. But two teeth are better than nothing.

3. Double Vision ... Score: 100%
My pirate patch is getting a workout. The only way to reduce the number of faces I shave in the morning is to close an eye. Today, Debbie and I went to lunch in Tampa and a young girl walked past me saying, "Hey, that's a cool patch you're wearing." Later, I realized she had just been to the Comic Con at the Convention Center and probably thought I was one of the Walking Dead. Geez ... now it's a fashion statement.

4. Whining ... Score: 50%
I'm making great progress here. I have cut the "feeling sorry for myself" score in half. Debbie only had to listen to me for 3 days.

5. Energy Level ... Score: Pretty Darn Good
I'm not breaking any track records, but I have been moving my sorry butt around town a lot more lately.

Overall ... I'm doing ...  (yawn) ... better than ...(why me, Debbie?) ... I thought I would at this point.

(Bedtime!)

Wednesday, August 21, 2013

Brain Boy: Day 34: A Walk in the Park

Big day today... I got a haircut!

And before I got a haircut, I took a walk downtown. From my house, it's about two miles down and back. It may not sound like much, but between the haircut and the walk I felt like I finished a marathon. Dripping in sweat ... I strolled through Vinoy Park, my halfway point, and just took it all in. 

Vinoy Park has so many great memories for me. 

It was the home for A Taste of Pinellas for many years. I walked through Straub Park, its little brother, and remembered the Taste in its infancy more than 25 years ago. Sad to say ... but the Taste has gone recently on "hiatus" according to the news released from All Children's Hospital ... to retool and find out how to make it "work" again.

I've read the blogs and articles and comments about the Taste ... there is a lot of passion for this event and people are not ashamed to express their feelings. They feel that the Taste belongs to them. I'm happy they do because it is theirs ... it always has been.

A Taste of Pinellas had an unlikely start ... Lewis Kroll, a tireless volunteer for the hospital and owner of a restaurant supply company and Thelma Rothman, owner of Kane's Furniture and the hospital's greatest benefactor came to my office 26 years ago with a crazy idea about a food festival downtown on the scale of The Taste of Chicago.  Pinellas restaurants would serve tastes of their best dishes, not big servings, but tastes priced at 50 cents to a dollar with no admission charge!  At that time, there was not much happening in downtown St. Pete. "Sleepy" would have been a compliment. 

Well ... why not? What a great gift for the community and what a great event for the hospital.

We had a telethon to publicize it as a major event the same weekend, we partnered with the Pinellas County Restaurant Association whose members agreed to give back HALF of what they made in profits to All Children's and the city allowed us access. The Taste of Pinellas was born in Straub Park. There were a dozen Pinellas restaurants (many top beach eateries) who served a taste of their best under one large tent.  

There were so many people that first year under that one tent that we almost had to close as soon as it opened!

The city and the hospital had a premier event on their hands. The hospital electricians and volunteers from the community put electricity through the entire park as well as plumbing ... allowing the event to expand the length of the park and making it a great venue for the large events that followed. The crowds grew so large (merchants complained about too many people in front of their small shops ... believe that?) that the city moved the Taste into the larger Vinoy Park ... where the MORE electricity and plumbing was replicated by hospital staff and volunteers . 

One day grew to three days ... there were 50 restaurants instead of 12 ... music became a major factor and soon the event was being touted nationally. For many years it was listed as one of the Top 25 Events in the Southeast US by the US Travel Agents Association. 

The Taste helped to spur downtown redevelopment ... bringing hundreds of thousands downtown, raising millions for the hospital and giving a great gift to the community.

I haven't "Chaired" the Taste since I left All Children's four years ago and I don't know what the future will hold ... but I salute the hundreds of volunteers that made it happen every year ... The incredible volunteers ... restaurant workers and hospital staff ... that were so dedicated and proud of what they created.   






Oh well ... better walk home. It's time for my nap.       

Saturday, August 17, 2013

Brain Boy: Day 30: WHAT AGAIN?

Just when I thought it was all behind me ... I came back to the hospital for surgery number 3 (in 30 days).

All the cliches came to mind:
- Three strikes, you're out
- Bad things come in threes
- Three sheets to the wind

But I chose to look to the only positive one that came to mind ... "Three times is the charm". (Note to daughter Alissa ... I also thought of our favorite SNL Eddie Murphy routine "Unce, Tice, Fee times a lady" But it didn't fit this).

So here's what happened.

Wednesday night, I noticed that the surgical scar on my belly that held the shunt catheter had blown up overnight and looked like a small mountain range. Dr.V got our call and was out of the area. He told us to go to the ER right away and he would follow up in the morning.

Got there at 9PM. The Neuro Resident checked me out and ordered a CT scan. We were sent to the ER hallway where I sat on a stretcher and Debbie got a chair. We met some interesting people ... one of them was a guy in handcuffs who somehow leaned out the door in triage and yelled HELP. He disappeared back into the room with police and others and we didn't see him again.

We waited.

At 11 PM they came to get me for the scan. I laid in the hallway for about an hour as one tech after another passed me by ... I tried to flag them down (like getting a taxi) They ignored it. Midnight, got the scan.

We waited.

The docs came to talk to us about the scan and said that the shunt catheter that was placed in my abdomen had dislodged and was sitting in the skin of my stomach where the fluid was now collecting ... so surgery was called for. They called for a room. It was full but they promised to get one right away. That was at one AM.

We waited.

At about 3AM I told Debbie to go home and get some sleep and get something to eat because it wasn't looking good for a room too soon. She wasn't gonna leave. I had a conversation with the charge nurse about us just going home and coming back the next day. Not a good idea at this point .. trying to readmit after being in the system and then discharged. Might as well hang in there.

We waited.

At 5 AM I texted Dr. V who was on his way and trying to work things out on the surgery schedule for my procedure. He got there at 7AM and we were still in the ER just finalizing the plan for our room. No time to go the room. Surgery had been worked out ... so they wheeled me in right away.

As a side note .. the same surgical nurse that I had before met me in prep. She reminded me that she thought I looked just like someone that I won't even mention by name but is older, fatter and a tad more unattractive than me. I told her that was an insult. "Oh ... you know ... people think that people remind them of others all the time. Like me ... they used to say I looked just like the woman who played Wonder Woman on TV." I looked at the nurse who was 5 feet tall maybe, was older than me and certainly not what I remember of Wonder Woman. She added ... "Of course I was a little younger then."

Really.

Surgery was uneventful. Recovery was rougher this time ... dragons flew overhead and I got nauseous ... but it was calm by the time I got to the room.

I had no appetite. My throat was killing me (the breathing tube combined with a flu infection I forgot to mention that Debbie brought to me the day before) and my belly was very sore. That night it was a maze of pain killers and I sent Debbie home to really sleep.

I woke up feeling like I never really slept and still had no appetite. The nurses were great as usual. Debbie came back with a Dunkin Donut bag with my favorite: egg white veggie flatbread and a coolata. I ate and drank.

By about 3, we asked Dr. V if he could discharge me. The pain in my throat was much better and the belly was tolerable.

He did.

Got home last night at about 7 ... went right to sleep and didn't wake up until 10. Checked all my "parts" and everything seems to be in place.

NOTE: So many of you have been keeping me in your thoughts and prayers and I want you to know how much that means ... truly ... and how it helps me stay so positive. THANK YOU. I couldn't do this without you.


Monday, August 12, 2013

Brain Boy: Day 28: The Sammy Screenplay continued

I've been trying to get some more writing done the last couple of days.

In a previous post, I mentioned that I was doing a screenplay about Sammy (well ... based on Sammy). I wrote a scene to set up the plot. It was actually pretty close to a recent conversation that we had about a month ago:

INT. HAIM’S DELICATESSEN - DAY

Barry wheels Sammy up to the deli counter where HAIM greets them.

     HAIM
Sammy. You are looking pretty chipper today
.
     SAMMY
Say ... Haim  ... Make me a corned beef on rye, will ya? Very lean, lots of mustard and potato salad
.
      HAIM
Coming right up Sam ... Barry ... What can I get for you?

     BARRY
Pastrami for me, Haim. Thanks.

     SAMMY
Oh Haim ... This is my son Barry.

Barry just shrugs his shoulders and shakes his head.

      HAIM
   (smiling and winking at Barry)
Is that who that is? A fine looking boy Sammy. He looks just like you. 
   (to Barry)
Sit. Sit. I’ll bring it.

Barry slips Sammy’s wheelchair into an adjacent table and settles in.

     SAMMY
Bertha died.

     BARRY
Who died?

     SAMMY
Bertha. Remember Bertha? She used to sit with me at lunch and dinner. She died ... Another one dead ... They’re dropping like flies. I really liked Bertha.
   (beat)
She had a real bitch for a daughter though ... She never came to see her.
 
     BARRY
Oh that’s a shame. I remember Bertha. I didn’t realize you were that close.

     SAMMY
She was a lovely woman. She stopped sitting with me about a year ago. Said something about me to the nurses. I think she said I didn’t have good table manners. What are you gonna do?

     BARRY
Yeah. What are you gonna do?
 

Saturday, August 10, 2013

Brain Boy: Day 26: A Day in the Life

I just don't know where the time goes.

My schedule is just packed solid. I never realized how much there is to do when you are taking it easy and letting your body heal. I actually had to create a minute by minute daily schedule that I religiously print out for Debbie. (Ow ... she just hit me in the back of the head and called me "liar liar pants on fire"... she curses like that all the time).

Okay ... I'll just give you some of the highlights of my day (... as I'm sure you are just dying to know).

1. Playing with pool toys.

I can't actually go swimming yet because of my various "wounds" but I do enjoy playing near the water. I stole a couple of pool toys from Ella (nephew Colby and niece Andrea's adorable daughter) who comes over to our house for swimming lessons. Her brother Tommy just started lessons too. I might just steal some some of his soon (I'm getting bored with Minnie and the Fish).

2. Taking a shower

In keeping with the water theme, showers are now a little more complicated. When my head was covered with staples and the size of Peter Boyle's, I had to be careful washing (with baby shampoo) and redressing the area. Now, those staples are out and my head is just "big" (the way it used to be) ... Unfortunately, I have more staples in my stomach and back (thanks to my new shunt) and they require more attention. Debbie helps me by patiently removing the bandage (I scream like a little girl, she slaps me and then redresses the area after coating it with antibiotics).

3. Self pity

I allow myself about a half hour a day for this ... preceded by "Why me?" or "Why not (fill in the blank of someone you'd like to see suffer)? I add another 30 minutes or more if anyone actually listens to my whining (which never happens). BUT ... I subtract 29 minutes after Debbie, who by that time has cleaned the house, cooked the meals, driven me around and still manages to do real work says ... "Really?"

4. Playing the piano.

I did it once on Thursday ... I fell asleep during "Rebecca, Rebecca Get Your Big Leg Off of Me."

5. Calling the doctor

We talk a lot. He's very patient and listens to my daily update. After the standard report on pain, numbness and double vision ... the real important stuff is covered. My last announcement came a few days after my second surgery. I told him I made pooh pooh.

He was very proud of me.

  

Thursday, August 8, 2013

Brain Boy: Day 24: My Big Day Out

Big day today.

Debbie is taking me for our first "outing" since my surgery a month ago. Oh sure, I've been back and forth to the hospital and the doctor's office ... walking around the 'hood for exercise ... but that's about it.

So today, out of the goodness of her heart (and to get me out of the house so it could be cleaned) we set our course for two places that she just knew I would enjoy: The Nail Salon and The Grocery Store.

I could hardly contain my excitement.

First stop was the nail salon. I slumped into my chair and Debbie slipped in next to me. "Whew", I thought, "I don't see anyone I know here." This was important for two reasons ... one, whomever saw me would have a great story for their husbands and two, I hate the thought of having my nails filed ... I will probably cry like a baby.

I pressed the massage button on the chair, closed my eyes ...

"Well, I'll be ... Joel! I was just thinking about you ..."

Oh no ... I slowly opened my eyes.

"Hey Lisa ... wow ... I haven't seen you in forever."

Next to me sat one of the very special nurses who took care of my brother when he was in the Bone Marrow Transplant Unit at All Children's Hospital about 20 years ago. She made such a difference in his life. Two nurses that I will always remember ... Lisa and Cindy. Lisa was there when he was alive and Cindy was with him when he died.

"I saw your blog posts and wanted to write to see how you were doing. I even had a dream that we ran into each other."

"And here we are getting pedicures together ... who'd of thought?" I can't believe these words were coming out of my mouth. I might have just as well asked her what color she picked out for her nails. Debbie knew Lisa and actually worked with her mom at Delta so we had a chance to catch up and talk about so many "girl" things. Seriously, it was great talking to Lisa. She is one of the truly "good guys" who has made such an impact in so many lives.
 
So ... after I got clipped and Debbie got painted and cooked ... we were off.

I only ran into 5 people I knew at Publix ... a couple of retired guys who just wanted to talk to another guy and veteran shoppers who have the dash and grab down to a science.

I love my new rehab life! (silent scream)

Wednesday, August 7, 2013

Brain Boy: Day 23: Yo ... Bruce ... Guess Who?

Just when I was going through withdrawal after getting the shunt to reduce my head size and not needing the headgear I had gotten so attached to, I opened a gift from Randy and Linda. It's called Buff. A combination do-rag, cap, scarf and 342 other permutations. At the same time I got a really cool Sopranos tee shirt from my dear friend Debra from The Patterson Foundation.

So ...Here's the new me: let me introduce Little Steven Van Zandt Momberg (formerly ... in my dreams ... Silvio Dante, Sopranos Consiglieri and a founding member of Bruce Springsteen's E Street Band.)

By the way, Bruce I know you follow my blog religiously and in a few short weeks (months) I can join you on tour. Okay ... maybe not lead guitar but piano ... Roy Bittan? I have more hair than Roy ... We are the same age. I can do it Bruce. Show the picture to Stevie ... he's always acting anyway. I can fake the Jersey thing ... I ve got a few friends who can teach me how to talk (F***in' Aldo and Naz and Joe and ... ). They'd do it for f***in' tickets ... Bruce? ... Bruce?
     

Monday, August 5, 2013

Brain Boy: Day 21: Not So Random Thoughts

I am a lucky guy.

This experience is the best thing that's ever happened to me. I know that sounds bizarre  ... but it has forced me to slow down and examine my life. I get so busy "living and working" that I miss the part that gives it meaning.

Sometimes it takes a dramatic series of events to realize how precious my life, my family and my friends are. I'm not exactly Jimmy Stewart's George Bailey but lately I've felt like him ... with the outpouring of support I've received from so many wonderful people.

I've had those wake up calls in the past: Losing my brother to cancer, working at All Children's Hospital and going to funerals of very special kids, and previous close calls in my own life. But this is different. I think it's a combination of getting older and the realization that I don't get replays or rehearsals .. it's here and then it's gone.

My way of dealing with serious issues has aways been with humor. Some of it is because I like to stay positive and sometimes  ... well ...  how many of you have had this conversation?

"Hi Stanley. How's it going?"  

'"Well, the truth is that I haven't been too happy at work, my wife and I are talking about a separation, I have discovered Buddhism, started a new Steven King book ..."

"Really (looking at his watch)...",

"My last blood test was not too positive ..."

"Hmmm (staring at a passerby) that's good ,,,"

"Actually I'm dying of cancer."

"Well, That's very interesting Stanley.  Listen ... sorry to bolt but I have to pick up the kids. It was great catching up."

Truth is I will always use humor whether or not people understand it. It's just in my nature.

My kids kid me all the time ... and usually introduce me to their friends like this: "This is my dad. Now he really is a great guy (whispering) a little weird sense of humor, at times ... but he's really a great guy."

I immediately say something inappropriate ... never insulting ... and usually win them over.

Oh ... I almost forgot. My head shrunk and the hat fits. It's the little things ... you know?




Sunday, August 4, 2013

Brain Boy Beginning of Week 4: Just Another Day In Paradise

Turned the corner yesterday ... not the road I had thought we'd take ... but the results were positive.

The swelling was not going down this past week ... so they ordered a CT scan. It showed fluid accumulation in more than one place. The original "Patch" that was still not completely sealed because of an abundance of fluid and fluid that hung out around the brain because of traumatic incidences. Basically ... it happens in old age (made me feel much better) and trauma like radiation and surgery (I had both)  So ... Dr. Harry decided to do a lumbar shunt (threaded next to the spine and emptying in the peritoneal cavity), The cavity is where your internal organs live so there's a lot of room for the fluid to accumulate and dissipate. In my case ... really large.

Surgery took a couple of hours ... and ... of course came with a new design of headwear.  The first picture on this page is the top netting on which I sported my glasses for that Invisible Man look.

The good news: my face shrunk immediately to its new improved slim size (slim for a portly guy). I was in pain but my head finally didn't need to be lifted by crane. Had great care the night after surgery. Chelsy was actually my ICU nurse after my first surgery and for this one as well. Big shout out to the ICU nurses. They are fantastic (Chelsy ... especially ... because she laughed at my jokes in addition to being smart and professional and very good to Debbie) I was hoping to see Lara this time (dayshift) but she was off and I had Kelly for day shift. She was equally superb.

A couple of interesting staff members were memorable for different reasons. Joe the Radiology tech did an XRAY after surgery. Maybe it's me ... but I was a little surprised that he made me stand against the wall after I left the Recovery Room . Usually they have portable boxes that are wheeled into your hospital room.

Joe had his orders.

"Okay," Joe said. Stand here and I'll take your picture." It was all pretty hazy because of the pain. "So ... what? ... did you have a car accident or something?"

"No actually ... "

"Here, Stand closer." He pushed my hip closer to the box. Pain seared through my leg.

"WOAH. Careful ... That hurts."

"Oh ... very sorry. Was it here?" Swear to God he pushed it again.

Then there were the transport guys, One was from the Philippines and told me he was really a doctor but needed a  couple of courses in court reporting to finish his degree. I almost bought it until he talked about Habitus Corps.

Got home this afternoon and continue to exist in a dreamlike state. Brain buddies Jan and Betty who are also members of the "I'm Just Wild About Harry" Head Club had prepared me for this feeling ,,, if either of you are reading this I understand (until tomorrow when I might forget).  

Friday, August 2, 2013

Brain Boy: Week Three: Gifts and Thanks

It was a good day today.

1. I woke up.
2. I walked an extra two blocks.
3. Harry didn't drain fluid and said the lump looked smaller.
4. I finished The Sopranos.
5. I watched SPACEBALLS (the funniest movie ever made .. thanks Mikey)

I also got a couple more special gifts. Debbie and Brent and Stephanie and Del sent me a cool Stetson from Aspen. They sent me a size 20 or something but still didn't fit over my head ... gives me the incentive to get healthy and lose some more fluid (yes that IS what it is despite what my friends think).

My staff sent me a basket of fruit from Harry and David. Not sure whether Harry or David delivered it but it is delicious. They also sent a dvd of a staff created special original production "Laughter is the Best Medicine". I have to admit it rivaled Spaceballs ... everyone was funny (well everybody except for Steve Blair .. give me back the Emmy! And Noreen who reminded me I was the weakest link. And Donor Relations who played beer pong in the conference room and used my name in a drinking game. And Rob who used fake tears to give my eulogy.) There were other personal jokes that I will not talk about to protect the ... guilty. Love you guys.

Got a "star" robe from Mindy and Neil. I wear it every day. It's got my initial on it. I paid Debbie big bucks to ask me for my autograph when I lounge on the couch.  What a great gift ... really,  Other thanks since my last blog go to my in-laws for edible fruit and Steve and Holly too. Judy and Eric for making a donation to Menorah Manor in my name (while I'm alive).

Life is good!


Thursday, August 1, 2013

Revisiting My Little Brother

I wrote a story a few years back about my brother Wayne. I reprinted it once on his birthday and have been thinking of him often the last few weeks. If you'd indulge me, I'd like to reprint it again:

**************************** 


I spoke to my little brother last week.

These days, I do all of the talking. Last week it was about everything from funny stuff we did as kids to funny stuff my kids are doing today. He used to steal my mattress when we shared a room. He thought mine was much more comfortable than his so I let him think I didn't notice. Every night, I'd put some toy soldiers or little train cars under his mattress. He eventually traded back (thinking mine had somehow gotten much more uncomforatble).

We reminisced about our mom, Esther... and the tricks that we would dream up to drive her crazy. One night I told Wayne to hide in the closet. I put a pair of his pajama bottoms over the air vent that sat over the floor into the closet. I put slippers over the foot holes so that when the air was on, the pants ballooned and looked like Wayne was stuck in the vent.  At the right time ... I yelled to Mom that Wayne was stuck in the vent. She ran into the room as Wayne started moaning from the closet ... then she literally ran outside and started to yell for all the neighbors to help pull Wayne out. When Wayne and I appeared outside ... I pretended it was a miracle that I pulled him out. She never noticed that he had different bottoms on.

Over the last 23 years, Wayne has been in my thoughts just about every day. The last few months, I've spoken to him often for strength and for guidance. Wayne passed away in 1995 from a malignant brain tumor. I remember the way he lived his life. I remember how he continued on ... kept a positive attitude ... despite multiple surgeries, bone marrow transplantation and loss of bodily functions. He made a point of helping others in need of support during the years that he could.

He's still a great listener.