Back in the early 90′s (1993-1995 time range) life was good.  I was feeling great about many aspects of my life.  I was playing the sax full time.  Gigging all the time.  Practicing all the time.  I had a girlfriend and lots of friends.  I was working out and my health was good.  I was feeling pretty good about things.

Around this time I started noticing that I was laughing a lot. Have you ever met somebody who would laugh whenever they were uncomfortable or nervous?  Well that was me.  It started out where I would laugh at odd moments like during a serious conversation or when someone else was upset.  I think the people around me would just write it off as “this guys a little strange………”

As time went on my laughing got even worse.  It was now quite often the kind of laughing where you feel like you can’t stop.  Your whole body is moving up and down and your laughing so hard that you fall off your chair.  Have you ever laughed that hard?  Well, I was doing it all the time.  Many times a day.  Let me give you a few real life scenarios just so you can understand.

Every time I went to the bank and had to stand in line I would start cracking up.  Just laughing and laughing. I would get up to the teller and she would ask me “What are you laughing at?”  I would say  ”I don’t know” and just keep on laughing.  Many times this constant laughing would make other people laugh with me so it was kind of funny to see everyone at the bank laughing with me. The tellers at the bank actually named me the “Laughing Boy”.

Another situation that happened all the time is that I would burst out laughing during uncomfortable times in a movie.  I remember going to see “Braveheart” in the theater.  Do you remember that point where Mel Gibson’s wife gets her throat cut and dies……..well, I started cracking up.  Just giggling and trying to hold it in but I can’t and then I have to leave the theater because I’m laughing so hard. (when you laugh during points like this in a movie people either think you are a nutcase or they are a bit scared of you) I finally got a hold of myself and went back in.  Do you remember how “Braveheart” ends…….well lets just say I had to leave the theater again and my friends and everyone there was wondering “What is wrong with that guy?”

Another thing that I remember from this time is that I would always loose it in elevators.  I would be standing in an elevator by myself praying no one else would get on.  The doors would open and a bunch of people would get on.  It would be quiet and that nice elevator music would be playing.  Then I would start snickering and chuckling as I tried not to laugh.  The people would turn around and look at me and I would apologize.  They would turn around and I would start laughing again even louder while apologizing repeatedly.  It’s interesting because some people would laugh with me even though they had no idea what I was laughing at.  Some people would get mad.  Some people would start fidgeting and checking their clothes because they were afraid I was laughing at them.  Dealing with different people during this time was a major problem for me.

Any time i would have any kind of deep and intense conversation with my girlfriend at the time I would just start cracking up.  If she was mad about something I would start laughing.  If she was upset…..I would start laughing.  I had no idea why I was laughing! Most of these times there was nothing funny about it but all I could do was laugh.  Let me just say that this laughing thing did not prove to be a building block for a strong relationship.

One time I had Performance Appraisal that was given to me by my boss. ( I worked as a manager in a convenient store in 1995) As we sat down and he started to talk about my performance I started cracking up.  I was laughing so hard I fell off my chair and couldn’t talk.  That boss of mine got very mad.  I think he thought I was laughing at him because he kept asking me “What are you laughing at?” “Are you laughing at me?” I would just say “No” as I kept on laughing and tears were running down my cheeks.  He left quite mad as I remember.

Another time at this same store, the president of the whole company came in to see me as he toured all of his stores.  Lets just say that I didn’t leave the best impression.  He shook my hand and then watched me laugh for 5 minutes before he left.  Luckily, at that time I had one of the best performing  stores in the area so I think that helped me not to get immediately fired.

I could go on with the stories………I could talk about how I was at a funeral and started laughing and had to leave and walk in front of everyone as I laughed but that one is kind of painful for me so I won’t go into the details of it.   I could talk about the time I was in a church meeting and the preacher was talking about people “going to hell”  and I started cracking up.  He asked me what was so funny as I continued to laugh.  I didn’t have an answer for him so then he proceeded to make his lesson about how “People going to hell” is not a laughing matter and if you think it’s funny you should not be going to a church meeting. (I stopped going to those Sunday night church meeting after that)

I’ll continue with the rest of this story next time. There’s much more to it so check back later…………..Part 2

Around this time,  I started to notice more and more problems with my saxophone playing.  I would go to gigs and get so frustrated.  I would go to play an altissimo note (a really high note on the saxophone) that I had played a million times and it would come out wrong.  I would play a simple phrase and squeak ( I never ever,ever,ever did that!).  I would play a cool run of fast notes that I always played and it would be a mess.  I would be improvising a solo and have no ideas whatsoever!  Besides all that,  I couldn’t get through a solo without starting to laugh……… I remember many times where I would just stop playing in the middle of a solo and start laughing.  The band leader would just look at me and say “What’s up?” with a rather annoyed look on his face.  I felt like my time in that band was maybe drawing to an end so………..
I went to audition for another band that was looking for a sax player.  Up until this point in my life,  I would always get the gig when I went to an audition.  I would walk in, do my stuff and they would offer me the gig…..so this time I felt the same way.  I went in with confidence and knew I would get the gig.  I remember they played a rock & soul kind of tune.  I don’t remember what it was but I remember I played a solo and was squeaking through the whole thing!  I couldn’t believe it, I was so embarrassed.  Next they wanted to hear my jazz playing so they called “All of Me”.  The singer sang the melody and then at the end of the form I had a two bar break going into my solo (if you don’t know what this is, this is when the band drops out for two measures and you play something great to impress everyone with your mad skills).  Well we get to the break, the band cuts out, and my mind is totally blank!  Absolutely BLANK!  Usually, I have a multitude of ideas and thoughts about what to play at any given moment.  At that moment, I couldn’t think of one darn thing.  I remember I played a high A and just held it for 8 beats.  It was embarrassing.  Then when I started soloing it was a mess.  I was messing up the changes, my time was off, I was squeaking…….Halfway through I just resorted to a blues scale to finish the solo.  It was lame.  Worst solo of my life.  I remember an awkward silence after the song finished and the drummer said they would let me know. (I never hear from them)  I left the room embarrassed, my head hung low in shame and laughing hysterically.

After that experience, I realized that I needed to practice more.  I was playing 2-3 hours a day on average  but was more frustrated than ever.  I felt like my fingers and tongue would not do what I wanted.  I decided to try to amp up my practice time and go for 4 hours a day.  That would fix the problem.  I needed to get the old Steve Neff back in the game.

Around this time period, I was going to see a Psychologist with a friend of mine.  I won’t go into the details because it is personal but I was going to support them.  They were sharing some deep, painful memories with the doctor that were troubling them and I did what any close personal friend would do.  I fell off the couch laughing and then continued to laugh for the entire 1/2 hour session while apologizing for my bad behavior.  My friend wasn’t very happy with my response to their painful memories and needless to say I don’t remember being invited back after that.   On a side note, the psychologist pulled me aside and asked me about my behavior afterwards.  He thought he could help me with my problems so I ended up booking an appointment for myself and seeing him over a the next month or two.  He helped me realize that my awkward emotional response was due to the fact that I never saw my Dad cry while I was growing up.  It all made sense to me now! (In a very personal moment together I told my Dad about this.  He responded very tenderly with “Awwwww, that’s a load of cr**!”  It was a bonding moment for us).

Anyways, due to all these factors, I was slowly and steadily starting to believe that I was going crazy.  I was losing it!  When you are acting a certain way that is unacceptable and you have no idea why and can’t control it…..that feels like craziness.  That’s how I felt all the time.  These feeling and thoughts led me to be more and more depressed although you would never know it because I was the happiest depressed guy you would ever meet!

Around this time, I started noticing some other bizarre things happening to me.  I’ll go in to the details and stories about those in the next installment…….Part 3.  See you next time.  Steve

I took a job during the day to make some extra money at a convenient store.  I had worked for this chain of stores back when I was in college at Berklee so I could pay my rent and eat at the finest Boston food establishments………..McDonalds, Burger King, Wendy’s, KFC, Riley’s Roast Beef, etc……….  I ended up quitting a few years after college because I had a gun stuck in my face a few too many times while I was being robbed and decided I would rather just go back to being a full-time musician. (those stories are for another time)  I went back to work for this chain of stores as a store manager and a little bit later they asked me if I wanted health insurance……..I said sure.  I didn’t really feel I needed it because I never got sick but………… why not?   Better safe than sorry.  I signed up for health insurance.  Looking back later, I realized this was a very very wise decision.

Soon after this time,  I remember playing basketball with some friends of mine.  We were playing hard and I was sweating and really thirsty so I went into the house to get a glass of water.  I went to drink the water and it went half way down my throat and just stopped.  If your a guy, you know the feeling of swallowing and your adam’s apple moves.  It happens automatically.  (If you put your hand on it now and swallow you can feel it move.)  In this one instance, it felt like the water got to that point and then my adam’s apple wouldn’t move.  I remember just standing there and really trying to finish swallowing.  The water was stuck half way down my throat!  As a few seconds went by and I started to panic,  something happened and I was able to swallow.  I thought,  “That was weird” and went back outside to play basketball with my friends.  This swallowing thing occured sporadically  after this first incident but  every time it happened I would think “That’s weird” and then just go on with what I was doing.

The next thing I remember is going to a Redsox game.  I was in the stands watching the game and I had to go to the bathroom very  badly! (Yes I had a number of beers).  So I run down to the men’s bathroom and stood in line behind a ton of guys feeling the same way I did (I could tell because we were all bouncing back and forth from foot to foot in line).  I finally get to the urinals and  they were the kind made for mass urinaling (I know, that isn’t a word).   At this point my laughing starts kicking in.  All these Red Sox guys who have had way too much to drink are all standing in a row in front of this huge urinal doing their business and I start cracking up laughing.  I remember a bunch of them looking over at me wondering what the heck I was laughing at.  It was slightly awkward.  Ok scratch that……very awkward!  Looking back, I can imagine that a number of them might have thought I was laughing at something of their’s that was exposed at the moment………Yes, I know…….very very awkward!  Anyways, I start going to the  bathroom because I really have to go and………..nothing happens!  I’m just standing there waiting.  I really have to go and my brain is telling my body to go  but nothing what-so-ever is happening.  I’m just standing there laughing so hard that I’m shaking and wondering what’s going on.  By this point I needed to reassess my situation.  I do some quick calculations in my head……….1.) I’m standing next to all these rather large sports guys who have had too much to drink.  2.) I’m laughing uncontrollably so my whole body is shaking really badly.  3.)I’m holding a specific part of my body while not doing what I am suppose to be doing with it.  4.) These rather large drunk guys are starting to look over at me like maybe a solution to my problems would be a good punch in the face.   After adding these factors together I decide on a course of action.  I decide I need to make a retreat and I head for a stall.  I get in the stall, lock the door and then let all my laughter rip.  In front of the urinal I really was trying to hold it in.  I wasn’t doing a good job but I was trying.  In the stall I couldn’t hold it in any longer.  I just burst out laughing loudly.  One can only imagine what all the Red Sox guys were thinking outside the stall.  Finally, after a couple of minutes, I settle down and try to go to the bathroom again.  I still have to go really really really bad.  This time it is similar to the swallowing episode.  I try to go but nothing happens.  After about 10 seconds or so something clicks and the flood gates are opened!   I was so relieved! (physically and mentally).   I go back out to my seat and enjoy the rest of the game without mentioning a word to my friends.  It wasn’t really a story I wanted to share at that time.

Now you would think that after these two experiences, a normal person would go see a doctor.  Well, I didn’t.  I hadn’t been to the doctor since I was a teenager living at home.  To be honest, the thought didn’t even cross my mind.  I remember thinking   “I need to drink less coffee!’  “I need to eat more vegetables”  ”I need to exercise more”  “I’m too stressed out”    At no point do I remember thinking  “I should go to the doctor”.

After the Redsox game,   I had problems going to the bathroom for the next 3-4 months.  It wasn’t all the time but sporadically like the swallowing thing.  I never had the problem at home at first but  always in public restrooms.  If anyone else was in the restroom then I couldn’t go.  Even if I was in a stall and about to go,  if someone walked in to the bathroom then I couldn’t go.  I would have to wait until they left and then finish my business.  Later on, I remember having issues at home.  I would get up sleeping to go to the bathroom.  I would stumble sleepily down the hall and on arriving at the bathroom I would just stand there for 10 to 15 seconds waiting.  It would  eventually happen but  only after I stood there for awhile.

I had heard that not being able to go to the bathroom in public was something some people go through and that it could be a psychological thing so I brought it up to my Psychologist who I was seeing for the laughing problem.  I can’t remember what he said but this problem being tied to the fact that my Dad never cried seemed far fetched to me.  I was beginning to wonder if something else was going on here.

Around this time, I remember being  fired from the music gig I had.  I wasn’t specifically fired but I remember the band leader telling me that if I wanted to take some of the gigs off  (I think he meant most of the gigs or all of the gigs) then he had another player that could do them for me.  I’m pretty sure he was getting pretty sick of my laughing on the gigs.  I wasn’t finishing solos because I would start laughing and couldn’t finish.  He’d count off a tune and I wouldn’t play the melody because I started laughing.   There are probably even wedding photos out there with the bride and groom or best man giving a speech with me behind them cracking up.   Anyways, the gigs pretty much dried up at that point.  Luckily, I was managing the convenient store full-time so I had an income and health insurance at this time.  Losing the gig was rough but I would get another gig……………(IF I COULD EVER STOP LAUGHING!)

I’ll continue later in Part 4.  See you next time………….I have to go to the bathroom!  : )

The last symptom I remember was when I was driving to work one morning.  I remember exactly where I was.  I was just driving along looking at the road when suddenly everything doubled.  I SAW TWO OF EVERYTHING!  Two of every car, two Dunkin Donuts signs, two everything………. I  was a bit startled and shook my head and it returned to normal.  I remember thinking “That’s weird!” and just went on with my day.  It didn’t happen again for a few days so I just thought it was just some weird random occurrence.   A few days later it happened again, lasted a few seconds and went away.  It started happening about once a day but would only last a few seconds and then go back to normal.  Finally,  it started happening 2-3 times a day.  At this point, I thought I needed to get some professional help from some experts! (I know what your thinking……”It’s about time”)  I did what any smart, intelligent, twenty something young man would do with vision problems……….I went to “LensCrafters”.

Now this visit to “LensCrafters”  (they make eye glasses here in the U.S.) deserves a paragraph of it’s own.  I walked into the store and asked the receptionist for an appointment to get my eyes checked out. I was laughing the whole time I was talking to her.  She first asked me “What are you laughing at?” and secondly  ”If I was having any vision problems?”.   To answer her first question I told her I had heard a funny thing on the radio as I was driving there.  She looked at me skeptically.  I answered her second question by telling her that a couple times a day  I was seeing double and then it would go back to normal.  She called the optometrist  in the back and I repeated what I had told the receptionist.  They both looked at me like that was a bit strange (I was still laughing and giggling at the funny thing I had heard on the radio………of course you know there was no funny thing I had heard on the radio)  but told me they could perform an eye test on me.  I followed the optometrist to the back room and proceeded with my eye test.  My vision was fine when I read off the chart and things were going well.  The next part of the test didn’t go so well.  She asked me to sit in this contraption and put my chin on a chin rest while she looked into my eyes.  Now,  any of you who have had eye tests before have probably done this and know that you have to sit pretty still for them to look into your eyes.  I could not do that.  I started laughing and shaking so badly that the  machine starts shaking.  She asks me to “Please try to sit still” a number of times but I just am laughing even harder.  I’m laughing so hard that I have to get off the machine and I’m doubled over laughing.  After a few minutes, I’m starting to regain my composure and we try again.  I’m heading towards the machine and I’m doing good.  I’m serious.  I can do this.  I sit down and put my chin in the chin rest the whole time I’m thinking “Be serious! You can do this! Don’t laugh! Do not laugh! DO NOT LAUGH!”  I’m holding my mouth shut as tight as I can trying to hold my breath.  I start to feel the laughter coming.  I can’t hold it back!   I start shaking and shaking and finally explode into a extremely loud outburst of laughing that makes the optometrist jump out of her chair.  She sits back down and we try again,  she is finely able to look in my eyes and told me she didn’t see  anything wrong with them.  At this point,  she was suppose to do another test where you sit in a chair and this machine blows a puff of air into your eyes but I think she gave up on that idea after seeing how I was acting.  She asked me about my laughing and how long I had been doing that for.  She looked at my chart from the last time I was there and said that if I had done that the last time she would have made a note on the chart so she concluded that this was something new and that coupled with my double vision I should go see a Neurologist.  She said it sounded like something to do with my brain.  I still remember leaving the “LensCrafters” and seeing both the Optometrist and the Receptionist standing at the window waving to me with these concerned looks on their faces.  In retrospect, who would have ever guessed that I would get the best medical advice I could ask for from a “LensCrafters”……………

Now at this point,  you are waiting for my next paragraph to  read that I immediately went to the local hospital to see a Neurologist.  Right!  Well……..I didn’t do that.  I can’t remember why or what I was thinking but even though I was a bit worried I think I thought if I didn’t go then it would just go away and I would be fine. I think they call this “denial”!  Well, I had it big time.

About 5 days later, I went out  to a Chinese restaurant with a good musician friend of mine and the result of that dinner just might have saved my life.  I’ll tell you about that in Part 5.

The next morning I went to work at my job at the convenient store.  I kept hearing my friends voice in my head asking why I hadn’t gone to my Doctor so I called my doctor to make an appointment for a physical.  I think it was a 4 month wait until I could get the physical.  I don’t remember going into all the details about what I was going through but just booked the physical.  As I  was counting money in my back office later, the phone rang.  It was my friend that I had had dinner with the night before.  He said that he had talked to his Dad and his Dad said I should go see a doctor ASAP.  I told my friend not to worry and that I had made an appointment for 4 months later  which was as soon as they could see me.  I remember him saying that he thought that was too much time to wait and that he would call me back.  He called a few minutes later and with a very serious and urgent tone said that he had talked to his Dad again and that his Dad said that my situation sounded very serious and there was something very wrong.  He told me to leave work immediately and go to the Mass General Hospital emergency room.  I thought my friend and his Dad were overreacting and told him I would go after I was done with work that day.  I hung up the phone and started to count the rest of the money on the desk.  I was having trouble concentrating though.  I kept thinking  about what he had just told me and was getting more and more anxious.  Finally, I put all the money away in the safe and called my friend to ask if he would go with me to the hospital.  He said he would meet me down there. ( I know what you’re thinking “Finally!”

The drive down to Boston took me about 25 minutes.  I remember feeling like a nervous wreck the whole way down.  When I got to the emergency room it had a fair number of people in it.  If you’ve ever been in a big city emergency room you know that it can be filled with people with quite a variety of problems.  I remember sitting in a corner just giggling and laughing while people around me were bleeding, throwing up, crying and rocking in pain.  I was laughing the whole time.   These sick and perhaps dying people were looking over at me like I was an idiot.  My friend got there and finally they called my name.  I went up and the nurse asked what the problem was.  I remember just pointing to my face while laughing hysterically and saying “This!”  She was a bit confused so I went into detail about everything I have told you up until this point.  I remember going back to my seat and waiting some more.  Finally, a doctor came over and asked me all the same questions the nurse had.  He had me go through a bunch of weird tests that I thought were bizarre.  He would have me point at an object and then touch my nose over and over again. He would touch and scratch various parts of my body and ask if I could feel it.  He had me walking in straight lines and standing on one foot.  He would press down and up on my legs and arms and ask for me to push against him.  It felt like a DWI test being done by a state trooper………….Yes, I had one of those done once (I passed, but that is another story).   Finally, he said he would like me to get an MRI.  Everything I had told him about made him think it was something neurological and that an MRI would be the best course of action.

I remember going into the MRI machine and thinking that it was like being in a coffin.  Your in this long tube and the ceiling is about 24 inches from your face.  The difficulty with doing this at that time was that I couldn’t stop laughing.  To get good MRI scans you have to lay as still as you can and I was laughing and bouncing all over the place.  You wear headphones inside the machine and all I kept hearing was “Don’t move”  “Please stop moving”  “Please remain still”  “DON’T MOVE!” (a degree of frustration was in this voice).  They finally got the scans that they needed and I went back to waiting in a small room.  I remember not too long afterwards,  a doctor came in and told me that they had looked at the MRI and found a tumor about the size of a golf ball.  The tumor was apparently crushing my brain stem.   I was laughing when he told me and my response was “That’s terrific!”  He thought maybe I had misunderstood him and repeated what he had told me the first time.  I had the same reaction……..  I laughed ecstatically.  You have to remember that up until this moment in time I was thoroughly convinced that I was going insane.  The relationship with my fiance at the time had ended badly,  I had lost my music gig and wasn’t playing much,  my job performance at my day job was getting worse and worse (I don’t think I mentioned that).  I couldn’t have a normal conversation with anyone without totally losing it and cracking up.  I couldn’t go to the bathroom in public.  All my friends thought I was weird.  I was seeing a Psychologist  for my problems and getting nowhere.  I was totally convinced that I was crazy……………… When that doctor came in and said there was something physically wrong  with  me that was one of the happiest moments of my life.  It was great news!  There was something physically causing this and maybe there was something that could be done about it.

The visits and meeting at the hospital are a bit of a blur.  I think I was there for a few days.  I remember seeing a multitude of doctors.  MGH (Massachusetts General Hospital) is a teaching hospital so these large groups of interns would come in trailing the doctors like on Greys Anatomy or ER or something.  I would get the same questions from every doctor and every intern over and over.  I also remember them performing multiple tests on me like that first Neurologists had done in the ER.   At a certain point,  I just felt like saying “Can’t you just ask the other 20 people that have done these same tests on me?” I must have done that test probably 20 times……………

MGH  asked if they could have a bunch of doctors come from the Boston area hospitals to meet with me because of my intriguing symptoms.  I went into this board room and there were about 20 of the top Neurologists from around Boston asking me all about my story.  They actually video taped that session. (I would love to get my hands on that video just to see it) These were some of the most serious and intense people I had ever talked to in my life and I was laughing hysterically the whole time.  I don’t remember them even cracking a smile.  They all asked me the same questions and I recounted my story just like I have for you here.  They were taking notes and  kept apologizing for all the questions.  I got the feeling that brain tumors that cause laughter aren’t very common.

The way the Doctors explained my situation to me was that the tumor was crushing my brain stem.  They showed me the MRI’s and compared them to a normal persons MRI’s.  With a normal person you will see a nice roundish brain stem that leaves the brain and is attached to the spinal cord.  In my situation right where the brain stem should have been was a big white golf ball type object.  The brain stem was smashed over to one side and was squeezed into a thin line making it’s way around the tumor.  What the doctors thought was happening was that my brain was sending signals to my body and the signals were getting delayed or distorted by the smashed brain stem.  When I would go to drink some water it would get half way down and then the automatic message to swallow would get stuck in the brain stem.  The same thing would happen with the going to the bathroom message from the brain.  My brain would send a message to my body to go to the bathroom and the message would just get stuck in that smashed brain stem.  The laughing was caused by my brain sending my body a signal and the message sent would get all convoluted and come out as “laugh”.

The doctors finally decided that the best course was to operate and try to take the tumor out physically.  Now this was a pretty dangerous surgery but we’ll get to that later.  In the meantime they sent me home for two weeks until the surgery date.  I’ll get to the details of that in the next installment (Part 6)

I remember meeting with a Doctor to have the talk you have before a major surgery.  His name was Dr. Harsh.  He basically laid out the entire plan for me, the options and the things that could go wrong.  I remember thinking while he was talking ” Man, this guy is harsh!”   It was a hard conversation to have.  Basically, he told me that they wanted to take the tumor out by going through my left ear. Part of the surgery would take about 5 hours and they would cut around the top and back of the ear, cut through the skull and take out my inner ear.  They would then wrap me up and a few days later go back in,  lift up the left side of my brain and go underneath it to cut out the tumor.  Now as you may know, I have been a professional musician for most of my life.   I was very concerned about losing my hearing in one ear and asked if there was an alternative way to do this so that I could save my ear.  He said there was,  but it was much more complicated and dangerous.  It involved going through the back of my nose via my face. While he was talking about the dangers of that frontal procedure (including death) ,  I interrupted him and said “I’ll lose the ear”.   I figured I would still have one good ear and that would be better than being dead.

The doctor then went through a list of things that could go wrong during the removal of the tumor.  The big word that stuck out to me was DEATH.   He said there was a greater risk of other problems but DEATH could result also.  The tumor was in an area where there were a number of cranial nerves and there was a greater chance that these could be affected in some way. The cranial nerves affect things like:

-Sense Impulses through the body

-Chewing

-Equilibrium

-Vision

-Facial Sensation

-Hearing

-Respiration

-Salivation, Swallowing

-Smell

-Taste

Not a good list of things to have messed up.  (Especially, if you are a person who makes his living from playing the saxophone……..) He also talked about the chances that I could have paralysis of the face in some way.  He told me the total operation would be about 18 hours long.

At this point in time,  they weren’t sure if the tumor was malignant or benign.  They would know that fact only after the surgery was done.   Of course,  if it was malignant that would mean chemo and radiation and all that but I didn’t want to think about that just yet. (Although I was thinking about it quite a bit………..)

At the end of our pleasant talk,  I had to sign a paper that basically said I agreed to the surgery and wouldn’t sue the hospital if I died on the operating table…….I told him “If I die on the operating table you won’t hear from me again” (My attempt at being funny).  He didn’t laugh.  On the way home, I just kept imagining waking up with my head cut open and these guys poking my brain.  I had that nightmare a lot over the next few weeks.

I went home that night feeling a bit numb about the whole thing.  All my friends were asking me how I was doing and what I was feeling.  They thought I was in denial I think.  I just felt kind of numb to the whole thing. I remember praying a whole lot during those two weeks.  I remember  that I didn’t feel scared at all about dying.  I believed in God and I believed  in an after life and I believed that I would go there if I died.  I just thought that if that happened I would go under for the surgery and wake up and be in heaven and all things considered that’s a pretty good way to go.  It’s like dying in your sleep.  The thing that was more scary to me was having some of the other problems………paralysis, hearing problems, speech problems, vision problems………..I remember praying that whatever happened that God would give me the strength to deal with it no matter how bad it would be.  (Of course, I also prayed that it wouldn’t be that bad!)

For those two weeks I just hung out with people.  My parents came out to be with me.  I believe my brother came out again.  I was spending a lot of time with my friends everyday.  The last night before the surgery, they all had a little get together for me.  In a small room in Watertown MA.  There was about 40 people and they all shared about what I meant to them and the impact I had had on them.  It was a pretty emotional time.  There were many tears shed (of course I was laughing the whole time don’t forget).  I remember thinking at the end of the night that if this was my last night on earth then this was a pretty good way to go.  I don’t think there was anything left unsaid.  I told everyone I was close to how much I loved them and how much they meant to me and they told me the same.  I felt very supported and loved and ready to go in for the surgery.

The next day thing really get a bit crazy. My parents were there and were a major support to me. They were there for each step of it.  I remember talking to my Mom a lot and my Dad acted like he was running the hospital.   I wouldn’t have been surprised if during the surgery my Dad was  right in the operating room looking over the Surgeon’s shoulder critiquing his scalpel usage.  You think I’m joking but my Dad was very concerned and involved in the whole process. I don’t remember this but at one point as they were bringing me in for surgery another Doctor came out and started arguing with another Doctor about how he thought he was going first.  I don’t know what my Dad said but I know he was quite mad at what he perceived as a disorganized mess.  Anyways, I will always be grateful to have had my parents there watching my back.

They rolled me in for the first surgery that was to open up my skull and clear out my inner ear.  This was in preparation for the later surgery that would take out my brain tumor.  I remember counting as they put the mask over my face.  Every time that happens I make a mental goal to get  to 90 before I go under. 100,99,98,97,96…………..gone.  My concentration and willpower wasn’t enough to overcome the gas.

The next thing I knew, I woke up in some big room with stuff attached to me all over.  It’s weird when you go through this because you feel like time hasn’t moved.  Moments before I was laying there counting down from 100 and now I was waking up  what seemed to be seconds later.  When I opened my eyes the room was spinning like crazy.  I mean it was spinning all over like when you get off one of those rides at the amusement park.  I felt horrible and started throwing up.  I remember throwing up a lot during those next 12 hours. I don’t know if it was the affects of the drugs or motion sickness from the room spinning.  I tried to keep my eyes closed most of the time because every time I would open them I would lose it.

The doctors came in and said that the surgery went well and that the spinning I was experiencing was from having had my inner ear taken out. Your inner ear helps you with your equilibrium and balance so that made sense.  For a couple of days I felt absolutely horrible.  I just kept touching the bandage around my head while I waited for the next surgery to happen.  We’ll get to that in………..Part 7

They asked me to count  backward from 100 and I again tried to see if my will power was strong enough to  fight the drugs……….I made it to about 96 again and don’t remember anything else.  This part of the surgery was pretty long.  I think it was 12-13 hours if I remember correctly.  I can’t imagine operating for that long but there were a few surgeons that all had different duties in the surgery so I would imagine they all take turns.

Next thing I knew,  I was waking up.  It was like I had just fallen asleep a moment ago.   Now this may sound a bit strange, but I’m going to share it because it really happened and I want to be as factual as possible here.  When I started waking up I was in a big room where they put all the patients after surgery.   The lights looked funny to me, like they were old.  I looked around me and it seemed like the medical equipment was also old.  A nurse came over to me and she was the happiest nurse I had ever seen in my life.  She had a big smile and her clothes seemed like clothes you would see a nurse wearing in the 1950′s.  All of a sudden it hit me…………I had been transported back in time to the 1950′s!  You might think I am joking here but I really thought I had traveled back in time!    I was giving it such serious thought that I was actually thinking of all the things invented since 1950 and trying to figure out what I could make tons of money with.  I looked up a little later and I saw my parents walking up with big smiles on their faces.  I had never seen them with such big smiles.  My first thought was that these were imposters and that it had something to do with the time travel.  My Mom started talking to me and I interrupted her with an urgent  question “What year is it?”  She looked at me funny……… “What year is it?” I repeated.   She answered “1995, why?”   I said “Are you sure?”  She said  ”Yes” and my parents exchanges a worried glance at one another.  The conversation went on about the surgery and  how I was feeling.    The whole time my parents were talking though,  I was thinking that not only had I been transported back in time but everyone else had also,  and they didn’t even know it!   At no time did it occur to me that I was a bit wacky from the drugs.  Over the next few hours I slowly returned back to reality.

The other thing I noticed when I woke up from the surgery was that I was seeing two of everything.  It was like before when I was having symptoms and I got the double vision but now it wouldn’t go away.  Everything I looked at I saw two of.  A little bit later a Doctor told me that the surgery was very close to my fourth cranial nerve and that it must have been affected during the surgery.  He told me that it  might  get better but we had to wait and see to find out.   The doctors came in and told me that the tumor was benign. That was a big relief.  I wouldn’t have to go through chemotherapy and radiation.  They did tell me that they couldn’t get a small part of it that was next to a main artery and the  cranial nerves.  They felt it was too dangerous too try to get it out.  They did get out 99% of it though so I was happy.  I felt awful but I also realized that I wasn’t laughing hysterically anymore either but that might have been because I felt so awful.

The next week in the hospital was a nightmare.  If you’ve stayed in a hospital for any length of time you will understand what I am about to tell you.  You can’t sleep, there is constant noise!  You have a life threatening surgery and now is the time to rest, recoup, get back on your feet.  What happens?  You can’t sleep.  All you hear all night long is alarms going off, patients crying, patients screaming, patients yelling at nurses,  nurses talking in the hall………….You finally fall asleep and then a nurse comes in and wakes you up and says “I have to check your stats!”  Ahhhhhhhhhhhh!  After a week of this, I was losing it. (I have nothing against nurses, I ended up marrying one)  As the days went on I would get up slowly and walk around the halls.  I had to go very slow and wheel my IV around with me.  I remember walking to a few of the lounges and looking out the windows at Boston.  I was happy to be alive but also very tired.

They finally let me go home.  I felt awful in one sense but kind of good in another.  I wasn’t laughing.  I felt like I had control of myself again.  I went home and tried to recoup and get my life back together.  They said I would be out of work for about 6 months as I healed but I think I went back to work at the  store after about 8 weeks. I was really bored at home and they said I couldn’t play my saxophone for a while. I had nothing to do. I finally went back to work and my life started to come back together.  I still had the double vision.  That wasn’t going way.  If I tilted my head to the right a good ways and directed my eyes up a little I could see single.  I started walking around with my head tilted to the right all the time so that I could see a single image.  It looked a little strange and felt uncomfortable  but you do what you have to do.

The other thing that I really remember, was the difference between hearing things in stereo and hearing things in mono.  I noticed this the most when I first drove my car after the surgery.  I had a really nice Lexus with a killer stereo in it.  I would love driving that car and the music would sound amazing in it.  Like it was all around you.  When I drove it for the first time after the surgery I put on some music and my first thought was that the stereo was broken.  I messed with the controls but it didn’t get any better.   It sounded dead!  Flat! Hallow! Diluted!  I realized that this was how I would hear for the rest of my life and I was so bummed out. I guess in the grand scheme of things this isn’t such a big thing but for me it was huge.  I listened to music all the time.  It was one of the things that I loved the most and now it would never be the same for me.

Now, on the positive side of things……… you might remember earlier in the story I said I had no health insurance.  I think God was really looking out for me because I took that job as a manager of a store and got insurance a few months before I was diagnosed with the brain tumor.  The insurance covered most of everything!  I remember months later being in a management meeting and they were talking about how they had really blown the budget with their health care costs by about 300,000 that year( they were self insured).  One of the managers looked over at me and in a joking way said “Thanks a lot Steve”.   Everyone kind of chuckled about that but it was a sobering moment for me.   I don’t know how much all those bills added up to but it must have been in the hundreds of thousands.  I am very grateful that I was protected in that way and could get the care and treatment I needed.  Now, whenever I talk to someone  that doesn’t have health insurance,  I tell them this story.  By the end of it they are usually convinced to get insurance!

About a month later, I tried playing my saxophone again.  It was unbelievable!  For me this was the most noticeable difference.  Yes, I wasn’t laughing anymore.  I could swallow normally.  I could go to the bathroom in public.  But………… when I picked up my sax I was seriously 100% better than I had been over the last 3 years.   I started playing and in moments my fingers were flying all over the keys.  I hadn’t played that fast in a long long time.  It also seemed like I was playing ideas that hadn’t occurred to me over the last few years.  I  just remember improvising on a song and being amazed at what was coming out.  To this day, I wonder if maybe the tumor was blocking or effecting my creativity in some way also.  It sure felt like it.  I could finally tongue the notes right.  My tone was much better and you have to remember that this is after not playing at all over the last 2-3 months.   I was giddy with excitement.  I probably played for 8 hours that day.

Now you probably think this is the end of the story, right?   The tumor was out, I was back on my feet and not laughing anymore.  What else could go wrong?  Lots!  There is more to this story!     See you next time in part 8……………

  Although,……..about once a week I started getting these unbearable headaches.  I never had headaches like these before.  I just felt awful.  My head would have this dull ache and sometimes sharp pains.   I couldn’t stand noise or bright lights or anything.  At times I would feel really nauseous, sometimes even throwing up.   The only thing that would get rid of it was sleep.  If I slept for any amount of time when I woke up it would be gone.  I got in the habit when I had these headaches of taking Tylenol PM then falling asleep for 4-6 hours and when I woke up the headache would be gone.  This was about every 7-10 days I think.  I didn’t go to see anyone about these headaches because I thought they were just a side effect of having your brain operated on.  Once in a while I thought maybe they left a scalpel in there or something but I always dismissed those thoughts as stupid.

In August of 1996 (almost a year later) I got one of my headaches.  I knew it was coming and called in sick to work that day.  It was a bad one.  I immediately took some Tylenol PM and fell asleep.  I woke up a few hours later and ran to the bathroom to throw up.  My head was killing me!  This was a really bad headache.  I laid in my bed and a couple minutes later had to run to the bathroom again to throw up.  This order of events continued for the next hour and soon it was all just dry heaves and my head felt like it was going to explode.  I mean it was the worst headache you could imagine TIMES 2!

Finally, I got my roommate and told him I had to go to Mass General Emergency room and that something was seriously wrong with me.  He drove me there as I moaned and threw up the whole way into a large black garbage bag.  I remember sitting in that all to familiar emergency room hugging my big black garbage bag as I waited to throw up again. My head hurt so bad that I think if had had a gun I would have ended it right there.  I was moaning and rocking back and forth.

After what seemed like an incredibly long wait, they finally saw me.  I told them my symptoms and they decided to do a lumbar puncture.  I had no idea what that was but cried out  ”Just do it!”   I also kept asking and pleading for some form of pain medication.  Anything……..morphine would work, codeine, percoset, vicodin…….JUST GIVE ME SOMETHING!!!!! They politely said “No” and that they had to assess what was wrong first.  So………they performed a lumbar puncture.  Now, for those of you who don’t know, a lumbar puncture is where they stick a pretty long  needle into your lower spine and draw out spinal fluid to examine.  As they described the procedure to me I was scared but at the same time in so much pain that I wanted them to just get it over with.  I had to curl up into a little ball on a table and they inserted the rather large needle into my spinal cord.  It was not a pleasant experience for me.

They came back a little while later and said that I had bacterial meningitis.  My first words as I remember were  ”NOW, CAN I HAVE SOME FREAKIN’ DRUGS?”  (Sorry for my language) They soon came with some nice drugs that  took the pain away.  I was so so happy after that.  My pain was gone and I felt like I was floating………….

Anyways, they gave me whatever I needed to fight bacterial meningitis and I got better.  I remember them telling me that I was very lucky that I had come in and probably would have died if I didn’t.  I remember a weird prayer where I thanked God that I had come in in time but at the same time I was wondering why God would give me bacterial meningitis after all I had been through.  Anyways,  I finally resolved that I would never know the answer to that.   It was a close call and I was glad to be alive. (not to mention not have that headache)

Now, the number one question on every Doctors mind  was how I had gotten this.  They were questioning me like I had committed some crime.  I guess this type of bacterial meningitis just doesn’t pop up out of nowhere in adults.  They were asking me about every detail of my life and they all looked a little bewildered to be honest.   Near the end of my stay in MGH an intern came in and was chatting with me about some general stuff.  Just making small talk.  He asked what I did for a living.  I said I played the saxophone professionally.  He jumped up and said “THAT’S IT!” and ran out of the room.  I just sat there thinking “OK, that was weird”  A little while later a whole  team of  people come in with that intern smiling this big cheesy grin.  It was my Doctor with all these residents on his coat tails. The Doctor said that they thought that my sax playing had opened up my Eustachian tube (they had sealed this on my left side when I had the brain tumor surgery) so that bacteria could enter up into my brain and give me meningitis.  They couldn’t see the opening on the MRI’s and catscans but they thought that when I played, the added pressure was probably opening up what they had sealed in the first surgery.  Solution: they had to go back in and seal it up again.  I wasn’t too happy about that………another brain operation!

They called my surgeon in and I remember he came in my room to talk to me.  Now pay attention here because this is pretty darn funny! (at the time it wasn’t)  He comes in my room to talk about the whole procedure and in the process mentions that in the future I can never play the saxophone again.  He just keeps talking but then stops when he notices the pale complexion of my face and my watery eyes perhaps.  He stops for a moment and I ask “What did you mean by that?”  He said “It is far too dangerous.  If you play your sax, the pressure could open this up again and you could die.  It’s better not to play and live a long happy life.”  There was a moment of silence.  I was speechless.  Finally I said “You don’t understand, this has been my life since 7th grade.  This has been all I’ve done and pursued.  I love it!”

Now, if this was in a movie you can imagine that this would be a big scene.  I mean this is the tear jerker.  There’s a moment of silence that is just frozen in time as you wait for what the doctor will say.   What tender and thoughtful words will he utter to console this beaten down victim of life?   What words of wisdom and support will he offer?   Here are the words I have etched in my memory to this day:

“I can totally understand how you feel.  I play bass in a hospital band and really love it also.  If I had to give up bass playing, it would devastate me also.”  I don’t remember what he said next.  I remember he got up and walked out of the room and I was in this cloud of thought.  The words that kept resounding in that cloud were these “DUDE, YOU’RE A NEUROSURGEON!”  I mean come on, the guy had Neurosurgery to fall back on if something happened and he couldn’t play bass in his fun doctor band or whatever it was.  The point is, that he chose to go into surgery and play bass as a hobby.  I didn’t do that.  I chose saxophone over everything else.  I didn’t really care too much about anything else I just wanted to play my sax.  Now, he was saying I couldn’t do that!   I was devastated!   I’m too emotional to go on……………..I’ll see you in part 9.

]]> http://www.neffmusic.com/blog/2009/10/as-funny-as-a-brain-tumor-part-8/feed/ 4 http://www.neffmusic.com/blog/2009/10/as-funny-as-a-brain-tumor-part-9/ http://www.neffmusic.com/blog/2009/10/as-funny-as-a-brain-tumor-part-9/#comments Wed, 07 Oct 2009 05:23:25 +0000 steve http://www.neffmusic.com/blog/?p=829 Read More...]]> Ok,  I have my emotions contained again and can go on with the story.  After the doctor told me I couldn’t play the saxophone again, I think I  was in a bit of a shock.  After a while, I started to feel pretty depressed.  I remember my friends and family members coming in and trying to cheer me up.  They were listing all of my talents and telling me about all the other things I would be great at as far as choosing another line of work.  Some even suggested neurosurgery but  nothing they said  would cheer me up.

The next day another Doctor came in to talk to me. He was the Ear, Nose and Throat surgeon who had originally opened up my head,  took out my inner ear and sealed up my eustachian tube. I told him what the other Doctor had said about never playing the saxophone again and he told me that he would fix it so that I could still play my sax.  He had worked with many professional musicians over the years and he understod how I felt.  He said he would do whatever it took so that I could continue to play.  I was very relieved after talking to him.

A few days later I went in for the surgery to seal up that eustachion tube permanently.  It wasn’t as big a deal as the first surgery and only took a few hours as I remember.  When I woke up I had that darn bandage on my head and half my head was shaved again.  The ENT Doctor came in who had performed the surgery and he said that the surgery was a success and that I would never have a problem with this issue again.  I don’t know what he did up there, but I’ve gone back to him a few times since then because of headaches and he didn’t even need to do an MRI or anything…….he knew that it wasn’t open again.  He must of sealed that thing shut with super glue or something.

I went home, shaved the rest of my head and took a month off.  By this point I was starting to wonder what the next thing I would be afflicted with would be.  I was starting to wonder what God’s plan was here.  I was starting to think about questions like “God, why is this happening to me?”  ”God, why are you doing this to me?”  ”God, can I just have a break here?”   I didn’t receive any answers at this time.

I will tell you that by this time, I was starting to worry about the number of cat-scans and MRI’s I had been having.  They say they are perfectly safe, but everytime I had one the technician would run out of the room before hitting the “start” button so this made me a little nervous.  I started thinking about all the test’s and scans (probabaly about 20-25 is my estimate) I had and joking with my friends that I hope I didn’t get cancer from all of this…………

You probably can guess what’s coming next…………., I only add it because I still feel that in some way it happened because of all those tests and scans for the brain tumor.  About a month after  my second brain surgery,  I  was following my normal routine.  I woke up and jumped in the shower. As I was washing I noticed that a certain area of my body seemed  different.  I won’t go into details in case there are any  children reading this, but lets just refer to that area as the “privates”.  Anyways, as was my habit, I ignored it and went on with my life.  A few days later, I was again taking a shower and the area I had noticed before seemed even larger and harder.  At this point I became a little concerned so I got out of the shower and went in my roomates room where he had a big medical book of symptoms and diagnosis’s.  This book was huge.  I looked up “Testicle” (OK, I guess I gave away what “privates” is  a code name for but the children reading this probably got bored and are watching “SpongeBob Squarepants” now) and found two  choices that I could choose from under that subject.  One was  a growth that had pain associated with it…….. the diagnosis was testicular torsion.  My brother had that at one time and he said it was the most painful thing he had ever experienced.  I had no pain.  I didn’t have that.  That led me to choice number 2: Growth and no pain……diagnosis: CANCER.   I remember just sitting there staring at the book in disbelief.  It was funny because part of me believed  what the book said was true and part of me just sat there thinking that this was just too unbelievable to even comprehend!   After all I had been through……..now this!   I was barely getting over my last surgery and now I’m staring at the word CANCER!  I actually remember laughing about it!  I just sat there laughing and about how strange this was.

Well, you guessed it,my next step was to go to Mass General Emergency room.  My home away from home. By this point most of the people working there new me by name.  I had my own room and gurney with my name on it.  Even the janitorial staff new me by name! (Ok, yes I’m over exaggerating at this point but to be honest, a whole bunch of doctors, nurses and even janitorial staff were starting to know me by name).  I went in to the emergency room and told them of my self diagnosis.   They  did an ultra sound as I remember and discovered that there was a growth on one testicle.  The doctor told me that he needed to  operate and take it out before it spread if it hadn’t already.

I called my parents after I found out this news.  I remember my Mom answering the phone and it was amazing because I didn’t even say anything.  All I said was “Mom” and immediately my Mom said “Oh No, Now what?” She knew just from the sound of my voice that I had some bad news to deliver.  My Mom was very comforting to me  during this time.  I remember my Dad got on the phone and it was around this time that he started to refer to me as “Job”. (If you know your Bible, you know what this is reference to.  If you don’t know,  then you can go get a Bible and read the book of “Job”. Afterwards you will understand his reasoning behind this.)

They operated a day or two later and took it out.  I won’t go into details but I’ll give you the same line I gave my wife when I met her later and she asked me how that surgery turned out…………………..” Let’s just say, I’m half the man I use to be!”  If you don’t get it…Well, think about it.

After the surgery, the doctor came in and told me that it was cancerous.  Not only was it malignant but the tumor was a very aggressive form of cancer and we needed to take radical steps to make sure it didn’t spread.  He suggested  operating and taking out half of my lymph nodes to check them to see if the cancer had spread (he informed us that they would have to remove the intestines, obtain samples of lymph nodes for biopsy,and then put the intestines back-Tell me that doesn’t sound GROSS!) He  also  wanted me to go through chemotherapy just to be safe.  I think at this point I was just so used to doing what the Doctor’s said that I just said OK  and resigned myself to it.

At this point in the story, I remember my Mom and Dad coming to town.  As I remember,  I was keeping my Mom and Dad  updated by phone throughout this dilemma.  I remember telling my Dad what the doctor wanted to do and he asked if I had gotten a second opinion.  I hadn’t, but honestly I didn’t really want to for some reason.  My Dad  talked to  the doctor and I remember him really pushing for a second opinion.  I got another opinion from another doctor and that doctor was much more cautious.  He felt that it was better to just wait and see and have me come in every 3 months for checkups and blood tests to see if the cancer had spread.  I decided to go with his advice and I didn’t have the surgery and chemo.  I was pretty tired of all the surgeries and needed a break.  I went every three month for a few years to see if the cancer had spread.  It never did!  I am so glad I didn’t have that surgery!   I’m not sure what lymph nodes do but I’m glad I still have mine.  Anyways,  they didn’t find any more cancer.  The story is over!  Steve lives happily ever after!  Well no, It’s not over yet. There’s still some major bumps in the road ahead.  I’ll get to those next time in Part 10.  See you then.