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.

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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.

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