Steve Neff Music Blog » Other Stuff http://www.neffmusic.com/blog website of Steve Neff Wed, 28 Jul 2010 11:58:35 +0000 en hourly 1 http://wordpress.org/?v=3.0 As Funny as a Brain Tumor! Part 15 http://www.neffmusic.com/blog/2010/02/as-funny-as-a-brain-tumor-part-15/ http://www.neffmusic.com/blog/2010/02/as-funny-as-a-brain-tumor-part-15/#comments Mon, 08 Feb 2010 17:04:49 +0000 steve http://www.neffmusic.com/blog/?p=1192 The next morning, our last day in Disney, I woke up to my kids talking to each other.  I sat up in bed and just looked at them.  There voices sounded normal.  I couldn’t believe it.  Matter of fact, I didn’t believe it. I put on the radio, it sounded normal. I was so excited and happy but I still didn’t say anything to my wife because I was afraid I was mistaken.  What if it was still messed up?  About 15 minutes later I told my wife. I then shared with her the whole story about the prayer I had prayed.  She didn’t seemed impressed.  I was shocked and in awe that God had actually performed a miracle for me and answered my prayer.  She just smiled and said “Of course, he does that all the time”. I just looked at her amazed at her faith.  ”Not like this” I said.  We went home later that day and I was one happy camper.

For the last 5 years things have gone pretty smoothly.  Normal life stuff. Nothing to write a blog about.  I’m happy about that!  I don’t know the why behind all the things in this story and I doubt I ever will but part of me thinks this last story was  so very important to me and my journey.  You see as you could probably tell as I told the story, I was growing increasingly more and more negative.  Many times I doubted if God existed .  Other times I thought “Well if he does exist, he’s kind of a jerk”.  Other times I thought “Well if he does exist, he could care less about me”.   For me this last act was huge.  I know many of you who are reading this might be thinking it was just a coincidence and God had nothing to do with it.  I just happened to pray that prayer the night before my hearing was to return to normal.  Believe me, many times I have even thought that myself.  But I keep coming back to that prayer that I said.  I laid it all out like I never had before.  I told him that if I were to see him work immediately then there would be no question in my mind.  He did exist and he does care about me. He is involved in my life and working and moving.  The next morning, I woke up and was cured.  You might think it was a coincidence but I like to believe it was something else.

Since that time in 2005 life has been good.  My girls are getting bigger everyday.  I’ve had many fun and happy times with them. More than I can count.  I’ve had great times with my wife who is my best friend. We bought a house that we all love and feel lucky to live in.  I feel very grateful.  Very grateful.

I had someone ask me once if I had any regrets?  Would I go back and change something from my past if I had the power to do so?  Without even thinking about it I said “No”. I wouldn’t change a thing. Brain tumor,cancer,bacterial meningitis,TEN,headaches,shunt even depression.  Those things have all worked to make me who I am today.  They have all brought me to to this place.  It feels good to be here.  I don’t want to leave this place.  I’m afraid that if I were to change one thing in the past then that would change where I am and who I am right now.  I like this place. No thanks. I’ll stay right here.

I’m not sure what the future holds.  I’m not sure if I’m out of the woods yet.  I pray daily that none of my girls take after me with health issues.  That’s my biggest fear.  Every time one of them says they have a headache I get scared.  I’m hopeful though. It’s out of my hands.  There is nothing I can do. About me and my future or about them and their futures. All we can do is the best that we can and at a certain point we all come to a point where we are to weak to handle things ourselves.  Some people never get to that point until they are lying on their deathbed.  Some people have too many of those moments through out their lives.  I do believe that if we can look at those moments with the right perspective we can learn a lot about ourselves and the people around us.  There were many times during this story that I thought I was cursed.  Now as I write this story out, I have a different view, maybe I am one of the luckiest people on earth.  I think it’s matter of perspective.

Like I wrote earlier in the story, I’m writing this to those of you out there that will read it and get something out of it.  I’m not even sure what you will get out of it and I  have already received many emails from people who were touched, moved or inspired in ways that I had not anticipated.     I do pray for those of you out there that are in a dark place.  I’ve been there and know how how sad and lonely it can be.  I pray and hope that you can and will come out the other side and end up in a place that is good to be in.  A place that you yourselves don’t want to leave.   Take Care,    Steve

Neff Family

Steve & Brenda with Sarah,Melissa, Jillian and dog Tucker

]]> http://www.neffmusic.com/blog/2010/02/as-funny-as-a-brain-tumor-part-15/feed/ 14 As Funny as a Brain Tumor! Part 14 http://www.neffmusic.com/blog/2010/02/as-funny-as-a-brain-tumor-part-14/ http://www.neffmusic.com/blog/2010/02/as-funny-as-a-brain-tumor-part-14/#comments Mon, 08 Feb 2010 16:41:50 +0000 steve http://www.neffmusic.com/blog/?p=1190 After the events in Part 13, I started feeling like my regular self. Life went on.  We moved a few times and ended up in New Hampshire.  I have two more stories to share with you and then we’ll be done.  Hopefully, there will be no more to tell in Part 16+  although I’m sure more medical travails await me in the future.  Thanks for hanging in there for the whole story.

Between 2002-2005 life went on.  Brenda and I had another child, Melissa and we were enjoying life up in NH. I had built up my private teaching to about 60-70 students a week and was playing in a great band every weekend. Things were going pretty good but there was one thing that was plaguing me and that was those damn headaches.  If you remember back to earlier in the story I told you about my headaches after the brain tumor surgery. They would come about once a week and totally wipe me out.  Nothing would get rid of them that I had tried.  All I could do was take Tylenol PM, fall asleep and 6 hours later they were usually gone.

Well during 2002-2005 the headaches increased.  They  happened more often and they became even more painful.  I am not exaggerating when I say that in 2003-2005 I think I had a headache about 98% of the time.  Sometimes it would only be slight but many other times I would be gripping my head and unable to handle it.  I remember countless times that I took my girls to the park.  They would be playing on the slides and swings and yelling for me to come join them and I would just be sitting on the bench holding my head.  As the headaches got worse so did my personality.  I  always tried to be nice and loving but I remember so many times where I would just snap and yell at the girls. Not because of anything they did but just because of the pain I was feeling.

Finally, I couldn’t manage anymore.  It was getting to the point where I couldn’t go to gigs or teach because  and was starting to call in sick. (One of the worst jobs is being a music teacher when you have a migraine…..Trust me! )  I went to my new doctor in NH and he  really had no answers for me. He ran a bunch of tests but was at a loss. He prescribed  me “Vicodin” for the times when it was really bad.  Now I went home and tried the Vicodin and have to say that it was my new best friend.  I would be in total intense pain and then take a Vicodin and the pain would just melt away.  I would feel completely happy.  Now before I continue you can probably see where this is going to go.  I mean the thing is, I had these headaches all the time so……….I started taking Vicodin all the time!  I’d go back and get more, and then go back and get more and pretty soon instead of it lasting a month, it would be gone in two weeks. Finally, my doctor said he couldn’t give me anymore. I was pretty upset. I could finally function. Go to work, play gigs, teach, play with my kids and go out with my wife. All I had to do was take a couple of pills and the pain would go away and now he was taking that away!  What would I do now?  How would I function?

I went home that day feeling pretty sad. (Don’t worry, I wasn’t depressed like before) The headaches came back and I just went on trying to live with them (not to mention coming off of Vicodin cold turkey which wasn’t that great either)

A few weeks later I went to see my doctor and this time I was adamant that we needed to figure this out because there was no way I could continue to live like this.  I have to say that of all the things that I had went through up to this point,  nothing compared to a chronic illness.  The worst feeling in the world is to have something that is chronic and have no cure nor any idea what it is caused from or how to fix it.  I have the most respect for those of you out there that struggle with a chronic illness.  I understand how hard it can be!

The doctor was making appointments with some specialist and on a whim I asked if I could see and eye doctor because the headaches seemed like they were always centered around my right eye. He made an appointment for me down at Mass Eye and Ear with a Nuero-Opthamologist to check out my eyes which as luck would have it was the best thing I ever did.  I went down to my appointment and the doctor checked my eyes after I told him about my headaches.  Within seconds after checking my right eye he told me that I needed to have a shunt put in my head to drain pressure from my head.  It turned out that my right eye’s optic nerve had extreme swelling and he knew immediately that there was too much intracranial pressure in my head. He scheduled a spinal tap and sure enough my pressure was very high. The doctor didn’t know why or what was causing it but he said the important thing is to get the shunt in place to decease that pressure ASAP.

A few days later, I went in for the surgery and they put the shunt in.  It would drain any excess fluid in my brain down to my abdomen whenever the pressure would reach a certain point. I had to go back for a few adjustment but once it was set right………my headaches were totally gone.  Now you have to understand that going from having severe headaches 98% of the time to none is like being releases from jail after 20 years.  I was free!  I was smiling, I had more energy than ever.  Right after this time is when I started my website, wrote all my books and started practicing again. From 2002 -2005 I couldn’t do much of anything because of these headaches but after the shunt the floodgates were opened.

One final story before I end this. A few weeks after the shunt was finally set up I woke up one morning and my youngest daughter came up to my bed and said “Good Morning Daddy” I looked at her funny because  to be honest, she sounded demon possessed.  I had heard two voices when she spoke.  Her normal voice and then another voice at the same time that was lower.  It actually freaked me out a bit.  I went downstair and sat at the table eating breakfast and all the girls voices sounded messed up.  I heard two voices every time they spoke.  Now this was alarming and weird but what happened next really scared me.  My wife put on some music and it sounded like garbage.  I mean it was the worst music I had ever heard.  I told her how bad it was and how out of tune the musicians were and she thought I was crazy. A little later I went to play my sax and that too sounded messed up.  I thought me sax was broke.  I played a G Major scale and half way up the scale the notes were incredibly flat.  I played a C major triad on my piano and it sounded horrible also.  All out of tune and like some dissonant chord from hell.  I truly flipped out at this point and went down to Mass Eye and Ear emergency room that night.  They had no answers for me but left me with………”Let’s see if it goes away”  You’ve got be kidding me I thought. I’m a professional musician and I can’t even listen to music.  As luck would have it the next day we were going to Disney World so I had no gigs for the next 2 weeks.

The next day my family and I went to Disney World in Florida.  The happiest place on earth and I was a total wreck.  For the 10 days we were there my hearing never got better.  My wife just kept telling me to let it go but of course it was hard to do that.  Finally the next to last day there I had to leave dinner because of a bad headache.  It was so bad that I was nauseous and had to go back to the hotel room.  Back in the hotel room I had a long talk with God.  I had learned over the past years to express my feeling and be real and I felt like I did that in prayer that night.  I was scared, mad and quite bewildred at what God was now putting me through.  After all I had been through……….my headaches were finally cured, I could now enjoy life and be somewhat happy and  now you take away my hearing so I can’t be a musician!

Now at the end of this prayer this is what I said “God, I’m going to try to have faith here and I believe you can heal me. I know you have always worked in my life through doctors and hospitals and I am glad you have.  I guess what I’m wondering is why you can’t just do a real miracle.  Why can’t I just pray for something and you answer my prayer.  Not with doctors, not with hospitals  but just you anwering my prayer so I know it is you and that you heard me and loved me enough to help.  I just ask that this one time you help me like I see that you did for people in the Bible.  I pray that you jut cure me so that I finally know that you really exist and I won’t doubt anymore.  Just this one time can’t you do that for me?”

]]> http://www.neffmusic.com/blog/2010/02/as-funny-as-a-brain-tumor-part-14/feed/ 2 As Funny as a Brain Tumor! Part 13 http://www.neffmusic.com/blog/2010/02/as-funny-as-a-brain-tumor-part-13/ http://www.neffmusic.com/blog/2010/02/as-funny-as-a-brain-tumor-part-13/#comments Mon, 08 Feb 2010 16:18:49 +0000 steve http://www.neffmusic.com/blog/?p=1188 Hello again.  No I didn’t die.  I’m sorry for the delay with this chapter but every once in awhile I have a problem with tendonitis in my arms and have to take a break from typing for them to get better.  I feel better now.  OK,  where was I…………..

I woke up the next morning and was surprised to find that I was still alive.  Not only was I alive but I actually felt better!  I think it was because I had finally slept that night.  For the next couple of days the doctors kept and eye on me to see how far the allergic reaction would progress but it looked like it had stopped and that I might be OK.  They released me a few days later and I went home.  I still had this feeling like something was around the corner and I wasn’t out of the woods yet.   When you have been through so many health issues you start to get a bit paranoid that every little bump,pain or weird thing is another deadly illness.  I drove my wife crazy with all of my concerns and questions during this time.

A couple of weeks later, I noticed that there were what seemed like large bumps in my neck that I had never noticed before. Another question to bother my wife with……. My wife took a look and she said that my lymph nodes were really swollen and enlarged.  We called my doctor and of course she gave me the advice she always did back then………”Go to the Mass General Emergency room”.  My doctors would always give me the line “Considering your medical history you should go to the emergency room………better to be safe than sorry.”

I went to the ER and to make a long story short, they admitted me into the hospital.  My next visit was from my old oncologist who was my doctor when I had testicular cancer.  He said that he was concerned that this might be a return of my cancer that had spread to my lymph nodes.  If you remember back to that part of my story, they were concerned that the cancer might spread to my lymph nodes about 4 years earlier.  I of course assumed the worse, and thought for sure that now I had cancer coursing through my entire body and would surely die!

But, I was wrong this time.  I didn’t have cancer thank goodness.  They did a number of tests and decided that this lymph node swelling was just another symptom that was lingering after my TEN (Toxic Epidermal Necrosis).  They let me go home and life continued for me.  My skin was a complete mess and I had to use a special cream on it everyday. It was always itching which drove me crazy.  Also, my wife said I was always complaining about the way my mouth tasted.  She said I was obsessed  with toothbrushes.  I would go out and buy a new toothbrush every couple of days and was convinced that if I found the right one and brushed enough the  weird taste in my mouth would go away.

Also, I have to tell you that something felt very wrong with me mentally.  By this point it was late December, early January of 2001.  What I’m going to share here isn’t easy for me but it’s part of the story none the less so you have to hear it.  I did  not feel right at all. After I got home from the hospital, I found I had very little energy.   I would have more trouble than usual waking up in the morning and would feel exhausted all day long.  Simple tasks like doing laundry or vacuuming  felt too tiring to do.  I found myself just crying for no reason what so ever.  I just felt this overwhelming sadness that seemed to be in me and I had no idea why or what to do about it.  Soon after this I started having odd thoughts. I would just be driving down the road and suddenly think about just yanking the steering wheel and running into another car coming my way.  If I was on a bridge I would think about just driving my car right off.  At first, these thoughts would just pop up out of nowhere but then they started coming more and more into my head.  When I took medication I would think about taking too much and going to sleep forever.  If I saw a movie with a gun I would imagine having a gun myself and imagine killing myself with the gun.  Now I know these are some alarming thoughts and some of you might feel uncomfortable reading about these things but those were the kinds of thoughts that were going through my head.

Now, before this time I had always thought of depression as something that happened to people who were weak and just couldn’t handle life. (I don’t think that anymore, I have read that it can be chemical and I believe that)  It was never something I would have a problem with because I was strong.  My wife helped me come to grips with the fact that no matter how hard I tried to deny it, I was in fact very depressed and that I should get help.  I can be quite prideful at times so for awhile I tried to fight that decision and work my way out of this state of mind by pure determination.  It didn’t work.  It just seemed like I was continuing to spiral down and down.  I wouldn’t call any of my friends, I hardly ever smiled, I wasn’t doing any housework, I wasn’t getting out of the house and trying to find more work as a musician. All those things seemed too hard to do and part of me just didn’t care.  I knew that I should care and I knew what I should be feeling and thinking but I just didn’t.  During the day I was tired and useless but at night I was a huge ball of anxiety.  I couldn’t sleep.  I remember going out for drives at midnight and feeling like I was having panic attacks.  I’d be up most of the night and then be even more tired the next day. My wife was 8-9 months pregnant and was about to give birth to our 2nd child while working 40 hours a week as a nurse.  I was home trying to take care of my 1 1/2 year old daughter and going out on gigs on the weekends.  This was a very stressful time for us.  I feel bad that I put my wife through that.

Finally, I decided to get help after Sarah was born.  I couldn’t keep putting it off. I went to see my doctor and we tried a few different medications.  I can’t remember the details but I seem to remember having a few adverse reactions to some of them.  Finally, I settled on one and took that for about 6 months.  During this time I saw a Psychologist who helped me out immensely.  We talked about all the things I had been through and all the feelings that I didn’t even know I was feeling.  I don’t know the bottom line to why I was feeling so depressed but as I went to those sessions and talked about things it was clear to me that I had some issues. I think my whole life I had always tried to do and feel what I thought was right.  If I felt mad or angry I would immediately squash those feelings down because they were bad feelings.  As I met with the doctor every week he would ask me questions about how things made me feel.  I shared about my whole medical history and after each part of the story he would ask me how that made me feel or how I felt towards others, myself and even God.  I would always answer with these pat nice answers that the doctor would always question. Finally when we got to the last episode of being in the hospital and breaking down he broke through my nice answers and I remember just sitting there crying and  feeling so mad and angry at God.  I knew that I had been angry but this moment revealed to me that I was still very angry. It also revealed  that I still thought God was out to get me, that I believed more bad things were coming and that no matter what I did I could not stop it or change that fact.  I still thought very strongly that I was cursed.  Obviously,  you can see how these thoughts would make someone quite depressed.

The other major breakthrough at this time is that the doctor had me read a book called “Feeling Good” by David D. Burns.  This book was amazing for me.  You can not even imagine how reading this book and talking to the doctor helped me change my life.  It was huge.  You see, up until this point in my life I had an “All or Nothing” mentality. I would always go to extremes with things.  If I was going to be a musician then I had to practice 8 hours a day.  If I only practiced 2 hours then I was a failure and would get depressed about it.  I would then use these depressed thought and sad feeling to motivate me to set more unobtainable goals that for awhile I would reach and then fail again.  My life was a cycle of this type of thinking. I was all about motivating myself with negative thinking.  I was also a  perfectionist.  Every single recording I made, I hated.  In 1993 I made a recording and as soon as I had it done I hated it and thought it wasn’t good enough.  I never did anything with it.  I’d practice and practice  and people would tell me I should make a recording and I would always think that I wasn’t ready. I wasn’t good enough.  I had this fear that if I thought I was ready or good enough then what would motivate me to practice.  Those were the negative thoughts that kept me working tirelessly all through high school, college, and adult life. I couldn’t let go of those thoughts.  That was my motivation.

Obviously, this book helped me to see the destructive thought processes I was having.  I still have the thought but now I recognize them and can work around them. For example, now on my website I have hundreds of sound clips of me playing the saxophone.  The old Steve would never have done that.  I would have listened to each on, thought it wasn’t good enough and discarded it.  Now I recognize those thoughts and I post the clips anyways deciding to overcome those thoughts.  Another example is my practice habits.  I’m still tempted to get down on myself if I don’t practice for  at least 4 hours but if I only practice for 1 hour that’s OK.  I can be happy with that.   It’s a matter of recognizing the thoughts and being able to get around them.   There’s more that improved but I can go more into that in another blog post.

Needless to say, a lot was revealed to me in these session and reading this book.  After about 6-8 months I slowly came out of this fog of depression.  The suicidal thoughts became less and less,  the overwhelming sadness lifted and I finally started smiling a bit more.  I actually had moments where I didn’t think God was out to get me and some new disease or tumor was around the corner.

]]> http://www.neffmusic.com/blog/2010/02/as-funny-as-a-brain-tumor-part-13/feed/ 0 Neffmusic blog optimized for iphone and other smart phones! http://www.neffmusic.com/blog/2010/01/neffmusic-blog-optimized-for-iphone-and-other-smart-phones/ http://www.neffmusic.com/blog/2010/01/neffmusic-blog-optimized-for-iphone-and-other-smart-phones/#comments Sat, 23 Jan 2010 03:51:31 +0000 steve http://www.neffmusic.com/blog/?p=911 I just wanted to let you know that the NeffMusic blog is now optimized for iphones and other smart phones.   I’ve only checked it with my iphone, but I have to say it looks great on the iphone. I’m not talking about the www.neffmusic.com site but just the www.neffmusic.com/blog/ part of the site.  If you go there on an iphone all the posts are laid out within the iphone screen and look great.  You can view them without having to adjust everything.  If you are stuck waiting for someone then you can just click on neffmusic.com/blog/ and read about the latest saxophone news.

]]> http://www.neffmusic.com/blog/2010/01/neffmusic-blog-optimized-for-iphone-and-other-smart-phones/feed/ 0 As Funny as a Brain Tumor! Part 12 http://www.neffmusic.com/blog/2009/12/as-funny-as-a-brain-tumor-part-12/ http://www.neffmusic.com/blog/2009/12/as-funny-as-a-brain-tumor-part-12/#comments Sun, 20 Dec 2009 04:01:03 +0000 steve http://www.neffmusic.com/blog/?p=858 Well, I’ve been putting this off long enough!  To be honest, this part of the story is not something I feel very excited about telling.  There are a few reasons for this.  One, it’s not funny (well maybe a little funny).  Two, it brings back some painful memories.  Three, it doesn’t paint me in the best light.  Four, it brings up some hard to answer spiritual and emotional topics that are hard to deal with.  Five, I cry like a baby in it. Six………………Well, I could keep going, but I think you get the point.  You might ask  ”Well, why are you sharing it then?”   I would respond  ”Because it is part of the story and that as painful as it was, there are millions out there that have gone through something this painful and millions more that someday will.  I’m not sure if my story has any answers or cures to life’s woes but I know there is a certain consolation in sharing these stories with each other and knowing you are not alone.  Sometimes just knowing that someone else has been through something similar to your situation is enough to give you the courage to keep fighting.”  That’s why I’m sharing it.

Up until this point in my story I have been pretty strong.  I had held it together and gotten through these different life challenges with my head held high and somewhat still optimistic.  After the first set of ordeals (brain tumor, meningitis and cancer),  my life was better in quite a few ways.  I felt grateful to be alive,  I was optimistic about the future and I thought the worst was behind me.  I met my wife and we even worked together in a Christian ministry for 2 1/2 years as I trained to be a minister.  Life was good and I could see a reason for the things that I had to go through to get where I was.  When you can understand a reason and see a good outcome to a hardship it makes it so much easier to accept and surrender to.  You would think, that as I sat in my hospital room that night, I would be able to reflect on these thoughts and be resigned to what the future might hold.   I was not.

I left you in Part 11 on a Saturday night.  My family and friends that came to see me had all left and I laid in my bed very afraid of what would happen to me next.  I remember praying diligently that I would be strong enough to deal with the road ahead.  Even reminding God of that scripture where he says “I will not give you more than you can handle” ( In case he forgot that promise………) I honestly did not sleep one wink that night.  My skin hurt all over like a really bad sunburn and I was starting to itch all over. That coupled with the fact that the hospital ward I was in seemed insanely loud.  I don’t know if it was the burn unit or what but I remember constant crying, screaming, yelling and alarms going off all night long.

The next day more friends and family came to see me.  Most people acted pretty discreet but one very Italian friend of mine came in the room and exclaimed “Good God Steve! What the heck happened to you?”  In a thick Italian accent. (Imagine an episode of the “Sopranos”)  During the visit he kept nodding his head and staring at me.  You see, by this point my skin was beat red (or is it beet red?) and was starting to all peel off.  I had flakes of skin all over my face, neck and chest peeling off.  I made it through that  Sunday and was so tired I was looking forward to trying to sleep that night.  Sunday night was the same as Saturday.  More screaming, yelling, crying and swear words flying around the halls.  I didn’t sleep a wink.  I even asked for something to help me sleep which they gave me and I still didn’t sleep a wink.

Monday I was so tired!  More friends came to see me but I remember feeling like I didn’t have any energy to talk.  That was one of the few days where I had friends there and I just turned over and went to sleep.  Usually, I would feel like I had to talk to them but that day I just didn’t care.  I was so tired.  Along with my friends were the visits from the Doctors and medical interns.  One Doctor would come by with 5-6 medical students trailing on his coat tails.  The Doctor would explain to them  all about my Toxic Epidermal Necrolysis like I wasn’t even sitting there and then the students would ask me all the questions they could think of. Usually they would ask me a bunch of questions about my history.  They usually stared at me like I was a medical students dream patient.  Anyways,  I made it through Monday and was hoping I would sleep that night.  You guessed it, I didn’t. Not a wink.

By Tuesday,  there were little black dots all over my skin.  The Doctor said that these were a sign of the the lower layer of the skin separating from the body before it would start to slough off.  I’m telling you this as I remember it so if I’m mistaken about the exact medical terminology I apologize.  I was extremely tired by this point.  More tired than I had ever felt in my life.  Until this point, I had been on an IV for 3 days because  they were pumping fluids into me to keep me hydrated.  I’d been sitting in my bed for quite some time and at one point decided that I needed to go to the bathroom.  I slowly  tried to get out of bed and as my feet hit the floor and I tried to stand up something felt very wrong. Something felt very heavy and was throwing my balance off.  I moved my hospital gown aside and looked down into my briefs and almost passed out.  I didn’t recognize what was between my legs.  It was this gigantic swollen mass of “something”.  I don’t know what the Elephant man’s private parts looked like (nor do I care to know) but if I had to imagine, this is what they would look like.  Let’s just say, I freaked out!  Maybe it was the lack of sleep but I felt like I was on the edge of insanity by this point. My wife walked in a few moments later and I frantically told her I had to show her something.  As I moved aside my hospital gown and pulled down my briefs I’m sure she was thinking “Steve, really? We’re in a hospital room and your skin is falling off!  This isn’t the time!”  Once she saw what I was frantic about she did what any caring and loving wife would do……….She burst out laughing!  She must have been laughing for a good couple of minutes.  I kept telling her it wasn’t funny but she was laughing so hard I don’t think I was getting through.  I called a nurse and told her I needed to see a doctor immediately.  A few minutes later the doctor came in and I showed him the object of my concern and he said “I can see why you are concerned. I would be too!”  I felt like I was in a Saturday Night Live skit or something.

Anyways,  the doctor explained to me that the IV fluids seemed to be draining down to the lowest part of my body and gathering there.  As I was sitting in bed, that lowest part was my groin area.  It was not an emergency. They would take me off the IV and the area would return to normal.  I was much relieved about that.

That day, I had another talk with my doctor and was feeling quite agitated.  I hadn’t slept in 3 days and I had this strong feeling that things were slipping away from me.  I asked him where this was all going and what I should be expecting.  He told me that they didn’t know and that I just had to wait and see.  This could be one of those cases that is the worst case scenario or it could just turn around at a certain point.  As I was thinking about my batting average so far, I was not optimistic.

Now if you were to ever meet me and ask me “What was the lowest point in your life?”,  I would immediately answer that it was that Tuesday night in the hospital.  I wouldn’t even have to think about it.  That was it. Here’s what happened:  That night I decided that I wanted to try to take a shower.  I hadn’t had one in 4-5 days and I needed one.  The nurse said it was OK.  I was exhausted but I felt this was something I could focus on.  I walked down the hall and into this little side room to take a shower.  I turned on the hot water got undressed and went in.  I’m not sure what happened in that shower,  something came unhinged in my mind  or the emotional floodgates let loose.  I just stood there with the hot water spraying on me and thought about my life.   All that I went through and what I was going through now.  I thought about my wife,  my one year old daughter and my second daughter on the way in a month.  As I was thinking, I felt this despair come on me like nothing I have ever felt.  I mean it was heavy.  I just had this strong sense that I was going to die.  Not only did I feel like I was going to die but I felt that God hated me and was out to get me.  I know those of you that are church going or have a belief in God will feel shocked by those words but that is how I felt at that moment. To be honest with you,  it was more than a feeling to me.  I knew these things!  I knew it as certain as anything in my life. I stood in that shower convinced that I was going to die very soon and that God was out to get me and make my last days on earth a living hell.

I starting sobbing.  I mean I lost it!  I fell to the floor and just sobbed uncontrollably for 10 minutes.  It didn’t stop.  I tried to get myself together and walk back to my room but I just kept crying.  All the way down the hall.   When I got back to my room, I called my wife.  I was pretty hysterical.  I was crying and sobbing and rocking back and forth.  I was trying to tell her that I was going to die and that I was cursed. I kept telling her I loved her and my daughters.  She kept trying to talk to me and help me be rational but I was gone.  I don’t think I was really listening to her as she told me that things would be OK and God loved me.  I was convinced otherwise.  At the end of the conversation I asked if she could call an elder in my church and have him come talk to me ASAP. I felt like I needed to talk about this stuff before I died.  As it turned out, she called the elder and left an urgent message but he never called me or came by to talk.

I went to bed that night sure I would be dead within a few days.

]]> http://www.neffmusic.com/blog/2009/12/as-funny-as-a-brain-tumor-part-12/feed/ 5 As Funny as a Brain Tumor! Part 11 http://www.neffmusic.com/blog/2009/11/as-funny-as-a-brain-tumor-part-11/ http://www.neffmusic.com/blog/2009/11/as-funny-as-a-brain-tumor-part-11/#comments Tue, 01 Dec 2009 02:08:43 +0000 steve http://www.neffmusic.com/blog/?p=850 After the Proton Beam Radiation treatment I quickly jumped back into things.  It was about a month later,  that I was on a gig playing my sax when I got this excruciating pain in my face.  It was a sharp pain that was in my jaw.  I had to stop playing my solo and I just held my jaw for a second and then it went away.  It happened a few more times that night and would last a few seconds and then go away. The next day it happened some more and I noticed that my tongue was numb and tingling. Sharp face pains and a numb tongue make it difficult to play the saxophone in case any of you are wondering.

My wife and I headed back to the Proton Beam  doctor to talk about these new symptoms.  He listened intently and responded that he thought the radiation treatment was affecting my cranial nerves.  Now if you have read “Part 10″ you will remember that this was my one and only question that I had asked this doctor.  Could this radiation affect my cranial nerves?  Remember that?  Well, I did!   I was a bit bewildered  by his analysis and brought up that he had told me this would not happen.  He replied that in a small amount of cases it does (You would think he would have mentioned this before before when he told me it never affects the cranial nerves!).  It was at this time that I started to believe that if a doctor told me that the prognosis was 99% good but there was a 1% chance it would be bad that I would fall into that 1 %. I didn’t really have a strong faith in the percentages by this point.  If the bad thing had a greater than 0% chance of happening that was enough to include me.

The doctor prescribed Nuerontin to me to help me with the face pain.  Within a few days I started getting a rash on my chest and he took me off of that drug and decided to give me Tegretol instead.   I started taking Tegretol and it really seemed to help I wasn’t having the face pain as much and my face wasn’t tingling as much.  About 3 weeks into taking Tegretol, I came out of the shower one morning and my wife exclaimed “Why is your chest so red?”  I said I didn’t know why but it had been getting red over the last few days.  By this point my whole torso  had a sunburned look to it.  My wife being a nurse correctly diagnosed that I was allergic to the Tegretol and to call my doctor.  I called the doctor and he said to  stop taking the Tegretol ASAP.  My wife went to work that night as I sat at the computer.  I was curious so……..I did some searches for “Tegretol” and “allergic reaction”.   I found a whole bunch of interesting reading on the subject.

Now the internet is an incredible tool.  It can give you the right information for you to make the right decision or it can give you so much messed up information that you are scared out of your mind  and it’s not based on facts.  Then there are those times that it can give you all the right information, scare you out of your mind and the lead you to the right decision.  This was one of those times.  As I was searching around the internet,  I kept gravitating to the worst case stories.  By this point in my path in life I had come to assume I had the worst case scenario so that is what I was drawn to.  The two terms that kept coming up were Toxic Epidermal Necrolysis (TEN) and Stevens-Johnson Syndrome (SJS).   It might be just me,  but having the words “toxic” and “necrolysis” in the title of a condition is not a good sign!  Basically, I learned that some people that have allergic reactions to Tegretol get this condition.   The condition causes your skin to redden and  peel similar to if you get a very very bad sunburn.  This happens all over your body.  Your skin then can separate from the lower layer and large sheets of skin slide off the entire body at pressure points (they call it sloughing) similar to a 3rd degree burn all over your body. Nails and eyebrows can fall off also.  People with this condition go sterile, lose their eyesight, have multi-organ failure,pneumonia,pulmonary edema, and die( mortality may reach 40%) If you want the full list of possible side effects you can go to this site and read about them. (Don’t do it on a full stomach)

As you can imagine, I had a hard time sleeping that night.  I called my wife about 4 hours later at work because my heart was racing like crazy and now I had a temperature of 102.    She suggested I drop my one year old at a neighbors house and  that I go down to the emergency room at MGH.  The neighbor’s wife stayed with my daughter and the husband ended up going down to the ER with me.  It was about 4AM when we arrived at the  MGH Emergency Room.  After waiting forever, we were finally seen and after some tests and blood work the doctor informed us that I was just having an allergic reaction to Tegretol and to just go home and take some benedryl and I should be fine.  Now, this is the point where I used my vast knowledge of medicine and the internet to impress the young intern.  ”Could I have Steven Johnson Syndrome?” I asked.  He looked at me with a look of admiration that you would only get from a peer who considers you his intellectual equal.  There was a brief moment where we locked eyes and he knew I would be a worthy adversary……….”Where did you hear about that?” he asked. “The internet” I responded proudly.  At 4 AM the young intern in all honesty looked quite tired.  He did his best to offer a polite smile, sighed,  and told me that the chances were low that I would have “Steven Johnson Syndrome” and that I should go home, take benedryl and rest (maybe even implying that I stay off the internet).  If by chance the fever continues or goes up, then I should come back.  I went home just as my wife who hadn’t slept was getting home from her overnight shift at another hospital. (Did I mention she was 7 months pregnant)  When I got home, I took some benadryl and went to bed.

I woke up later that day sweating like crazy.  My sheets were soaked. I got up and looked in the mirror and believe it or not my chest was even redder and my face was now beat red and everything was looking a bit swollen and puffy looking.  I woke my wife up and we went off to the hospital.  This time a good friend of mine also came with us.  Now I have to say that this trip to the hospital was quite different than the 4AM trip we had made earlier.  The place was “hoppin”.  There were doctors and nurses every where and we were seen pretty quickly.  We didn’t play around this time.  I quickly mentioned my research into the Steven Johnson Syndrome to the first doctor we met.  It helped that my knowledgeable registered nurse wife was there who knew what she was talking about  as opposed to me who had surfed the net and was mis-pronouncing words ( I think I was telling  the staff I thought I had Toxic Thermal Hydrolysis).  I remember getting a whole bunch of other tests but in the end they came back and said that yes, it looked like I had TEN (Toxic Epidermal Necrolysis).

A bunch of doctors came in and talked to me but basically they all said the same thing.  All they could do was put an IV in, hydrate me, and wait to see how far it would progress.  I thought that just because I stopped the drug I would immediately get better but that wasn’t the case.  Once the symptoms started all they could do was wait and see where it went and give me pain medication to help.

I stayed in the hospital and sent my wife home.   She needed to pick up my 1 year old and she needed sleep herself.  I wasn’t sure where this was all going but to be honest I was reaching the end of my rope here.  I started to have a mix of feelings like I was  really starting to lose it.  I had mentioned earlier that I had a strong faith in God.  Well at this particular moment,  I felt like I had a lot of anger boiling up inside of me.  Brain Tumor…….OK.   Meninigitis…….OK.  Cancer……….Well, I’m not happy about it but OK. Return of brain tumor……………..AhhhhhhhhOK!  Side affects from radiation……..OOOOOOOKAY!.  Now severe allergic reaction that could end with my skin sliding off my body and then organ failure and to top it all off death!   I  GIVE UP!   AHHHHHHHHHHHHHHHHHHHHHHHH!   I went to bed that night silently screaming! You have to wait until Part 12…………..

]]> http://www.neffmusic.com/blog/2009/11/as-funny-as-a-brain-tumor-part-11/feed/ 10 As Funny as a Brain Tumor! Part 10 http://www.neffmusic.com/blog/2009/11/as-funny-as-a-brain-tumor-part-10/ http://www.neffmusic.com/blog/2009/11/as-funny-as-a-brain-tumor-part-10/#comments Mon, 30 Nov 2009 14:11:38 +0000 steve http://www.neffmusic.com/blog/?p=838 In this next part of the story,  we need to skip ahead a few years.  Just so you are clear on the time line, I had the brain tumor symptoms from 1993-1995.  I had the brain surgery in August of 1995.  I had bacterial meningitis in August of 1996.  The second brain surgery in September of 1996 and testicular cancer in October of 1996.  Now at this point in my life I do experience a bit of a reprieve from my troubles.  In 1997 I meet the beautiful woman that I would fall in love with, Brenda.  In 1998 we get married.  In 1999 we have our first baby girl.   Life is pretty good.  The only thing I have to complain about during this time was the weekly migraines that would usually put me out of commission for a day.

Around 1999 sometime I remember being somewhere with my wife and I was telling the people we were with about this whole brain tumor story.  At the end of it, I non-chalantly told them that the doctors took most of the tumor out but had to leave a small bit of it in there because it was in an area too dangerous to operate on.   I remember my wife being really quiet on the car ride home.  I asked her what was wrong and she said she was surprised and hurt (She seemed a bit mad also) that I had never told her that they had left part of tumor in my head.  I hadn’t intentionally done that.  I was just as surprised as her that I had never told her that bit of the story.  She seemed like she was a bit nervous about this fact but I reassured her that it had been 4 years since it was taken out and that I had had an MRI every year and the tumor had not grown at all.  There was nothing to worry about!  (This is the statement that probably jinxed me!)

My Surgeon back in 1995 had said that the follow up for the tumor would be to come back every year for 5 years for an MRI just to check that the tumor remnant wasn’t growing.   I had gone for 4 years and the remnant of the tumor hadn’t grown at all.  I had also gone back to check about the testicular cancer.  At first every 3 months, then every 6 months, then once a year.  It never came back or spread.  In my mind I was in the clear.   I had pretty much decided that I didn’t need to go in for that 5th year MRI.  I was fine.  I was doing great and life was too busy to be bothered with another MRI.

In 2000, I met another woman in my church that was going through her own brain tumor experience.  We had a few talks about it and I shared my experiences and tried to give her encouragement and hope about her situation.  She was also going to Mass General Hospital where I had gone and her surgeon was one of the surgeon’s that had operated on me, Dr. Chiocca.  She asked me to go with her to her next appointment and I agreed.  While at the appointment I reminded Dr. Chiocca of who I was since it had been 5 years since I had seen him.  He immediately remembered.  The minute I said my name he said “Yes, of course, the laughing patient”.   At the end of the appointment as we were walking out the door Dr. Chiocca asked me where we were at with the follow up.  I said I had been back for 4 years but was overdue for my 5th year MRI and was actually thinking of not doing it.  He said that he agreed and I was probably fine but he wanted me to come in for that last MRI.  I said OK and booked it.

I went in for my scheduled MRI and a few days  later I received a phone call.  A woman told me that Dr. Chiocca would like to have a meeting with me.  The red flags immediately went up.  Over the last 4 years of MRI’s I had never received a phone call and the Dr. had never needed to meet with me.  Usually, I would get a letter in the mail or not hear anything back which is a good sign.  I asked the woman why Dr. Chiocca wanted to see me and she just said that he wanted to discuss my MRI result. I knew in the pit of my stomach that this was not good news.

For a couple of days I was a nervous wreck.  Finally, when I went in for my appointment the doctor told me that the tumor was growing again at a fast rate.  He showed me the MRI’s and how they compared and I could indeed see a small solid mass in the middle of the film that was bigger than last years film.  I was bummed.  I thought I was in the clear and done with this.  Now what was going to happen?  Before, I had been single with no one else to worry about.  Now I had a wife and beautiful baby girl with a second baby on the way.  This time it felt a lot scarier to me.  There was more on the line.

Dr. Chiocca referred me to another doctor that he wanted to see.  I went to see this doctor with my wife and we talked about a course of action.  This time they didn’t feel like they needed to operate but could get the tumor by using “Proton Beam Radiation Therapy”.  This term kept reminding me of something from Star Trek.  It’s actually pretty cool!  This is how I understood it in simple terms.  They would insert 3 small metal BB’s at 3 location to my skull.  They would then take a mutitude of catscans to triangulate the exact position of the growing tumor in relation to those 3 BB’s.  Once they had the coordinates exact and double checked a number of times they would strap me into the proton beam radiation machine.  The machine would send two rays through my head so that they crossed right at the location of the tumor.  Where the rays crossed  would heat up and the tumor would basically get fried.  As you can imagine, there could be no movement while this was going on as frying the wrong thing would not be good. So to avoid movement, I would be unconscious and would  have 3 screws from the machine screwed into my skull so it was impossible to move.  Sounds fun doesn’t it!  I’m not sure how exact my description is of how the machine works but this is how I understood it from my doctor.   He told me that there were only a few machines like this in the world.  I think they are rare because you need a nuclear reactor to use one. (That  really sounds like Star Trek) I was relieved that I didn’t have to have another surgery but I was pretty nervous about this procedure all the same.

At the end of this conversation with the doctor, he asked me if I had any questions.  My main question was this: Could this procedure and radiation effect my cranial nerves in a negative way?  As you remember from  earlier in the story, they had to leave this part of the tumor in my head because it was too close to some important cranial nerves and blood vessels.  Wouldn’t this frying of the tumor by radiation also be frying my nerves and vital blood vessels?  I already had bad double vision……..I didn’t want it to get worse or have facial paralysis or some other thing go wrong.  The doctor assured me that that would not happen.  He didn’t even say “It probably wouldn’t happen” or “The chances of that happening are incredibly low”.   He said “No, that will not happen, I’ve done many of these procedures and it has never effected the cranial nerves”.

Even though, he reassured me I was still pretty nervous about this whole thing.  From what I understood, this was a pretty new procedure………..What if a spider crawled into the machine and got into the path of the radiation and I was turned into some kind of mutant!  (Although, cool spider-man abilities would be a plus)

I went into the procedure a couple of weeks later at the Harvard Cyclotron Laboratory.  This was around August of 2000 as I remember.  This time I had my wife with me which made it so much easier to go through.  She was with me every step of the way even though we had a baby girl and she was also 3 months pregnant also.  I felt bad that she had to go through this worry and stress because of me. I’m sure she could write her own blog about this 6 month time of our lives)  She was a great support though.  The procedure went great.  I won’t go into the details but when I woke up, I still remembered who my wife was and I wasn’t a spider-mutant so I was happy.(although, I was totally sick from whatever they gave me to knock me out-I think it was Demerol if I remember correctly)

Things get pretty ugly for me in the next section of the story.  I’m warning you now so you are prepared.  All that I had been through so far was easy compared to the next 3 months.  I’m not looking forward to writing about it,  but it’s part of the story so…………….see you next time in Part 11.

]]> http://www.neffmusic.com/blog/2009/11/as-funny-as-a-brain-tumor-part-10/feed/ 3 As Funny as a Brain Tumor! Part 9 http://www.neffmusic.com/blog/2009/11/as-funny-as-a-brain-tumor-part-9/ http://www.neffmusic.com/blog/2009/11/as-funny-as-a-brain-tumor-part-9/#comments Thu, 19 Nov 2009 05:23:25 +0000 steve http://www.neffmusic.com/blog/?p=829 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.

]]> http://www.neffmusic.com/blog/2009/11/as-funny-as-a-brain-tumor-part-9/feed/ 6 As Funny as a Brain Tumor! Part 8 http://www.neffmusic.com/blog/2009/11/as-funny-as-a-brain-tumor-part-8/ http://www.neffmusic.com/blog/2009/11/as-funny-as-a-brain-tumor-part-8/#comments Tue, 03 Nov 2009 02:31:54 +0000 steve http://www.neffmusic.com/blog/?p=817 Ok, on with the story.  If you’ve read parts 1-7 you know I’ve been through quite the ordeal.  It’s over now.  I can move on.  Start living my life and not worry about what’s wrong with me.  This was in the fall of 1995 and I’m doing pretty good.  Working a full time job and gigging again.   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 roomate 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 column (whatever it’s called) 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 came 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 some 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?   These are the words I have etched in my memory?

“I can totally understand how you feel.  I play bass in a band and  really love it.  If I had to give it up, 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/2009/11/as-funny-as-a-brain-tumor-part-8/feed/ 4 As Funny as a Brain Tumor! Part 7 http://www.neffmusic.com/blog/2009/10/as-funny-as-a-brain-tumor-part-7/ http://www.neffmusic.com/blog/2009/10/as-funny-as-a-brain-tumor-part-7/#comments Fri, 30 Oct 2009 12:32:16 +0000 steve http://www.neffmusic.com/blog/?p=806 Well………..where were we?  Oh yeah, in Mass General Hospital waiting for my next surgery.  As I remember,  it was 2-3 days later.   They came to get me for the surgery and it was an emotional time.  This was the big surgery where they were messing with nerves, arteries and not to mention my brain.  I also didn’t know if it was malignant (cancer) or benign.  I remember being wheeled in for the surgery and my Dad asked  ”How you doing, son?”  I responded  ”This isn’t fun, Dad”.   I was wheeled away with out knowing if I would see my family again.   I remember praying at that moment that if I died  I would wake up in heaven with God and if I woke up here that I would be surrendered to whatever my condition might be.  I prayed hard for those two things.

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 would 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 old. Next, 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 50′s.  All of a sudden it hit me…………I had been transported back in time to the 50′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 nurse,  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 now 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.

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 moments 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 probably.  I started playing and in moments my fingers were flying all over the keys. I hadn’t played that fast in a 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……………

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