As Funny as a Brain Tumor! Part 10

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.  Exactly a year later in 1998 we get married (we weren’t messing around…..). A year later in 1999 we have our first baby girl (like I said……we weren’t messing around…..well we were which explains the baby but…….Oh nevermind………).   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.  I could usually feel them coming and soon after I would get intense pain and nausea.  The only thing that would help is sleeping it off.

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 the story,  I nonchalantly 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.   Afterward,  my wife was 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 the tumor in my head.  You’re probably wondering why I didn’t tell you that earlier in the story also.   I hadn’t intentionally done that.  I was just as surprised as her that I had never told her that bit of the story.  I think I was so ecstatic and happy to be alive that I just never really thought about it.  I told this to my wife in those same exact words.  She said OK and that she understood but she seemed like she was a bit nervous about the fact that there was a tiny piece of the tumor in my head still.  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 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 was too busy to be bothered with another MRI.  I had a life to live………….

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. I tried to give her some 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 if I could 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 ups.  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 we booked it.

I went in for my scheduled MRI and a few days later I received an ominous 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 doctor had never wanted 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 results. I knew in the pit of my stomach that this was not good news.  Of course, they can never see you immediately, they make you wait to have the talk with unbearable anticipation and dread……….

For the next couple 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 not happy.  I thought I was in the clear and done with this cursed tumor.  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 me to see.  I went to see this new 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 in 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 a good thing. 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.  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.

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Steve About Steve

Steve Neff has been playing and teaching saxophone and jazz improvisation around the New England area for the last 30 years. He is the author of many effective jazz improvisation methods as well as founding the popular jazz video lesson site Neffmusic.com.

Comments

  1. Oh man Steve!!! I’m catching up on your story today. Read parts 6-10 today. I’ve gotta say you’ve got me throwing my hands in the air and saying “you’ve GOT to be kidding me!” with every new ailment you’ve come up with. Man!! First, you had to lose an ear. I felt the pain with that alone. But you didn’t stop there, no, no. That’s really, really cool how your playing improved after the first tumor removal. And then to be told no more playing?!??!?!? What?!?!?? Even though I didn’t choose music as a living, I too consider it to be my life force. So I can definitely appreciate the gravity of what you must have felt after that Dr’s callous statement. Then the science-fictiony treatment. Whoa! As always – edge of my seat.

  2. Avatar Gerardo Avila says

    What else could have happened to you next? after all that pain and suffer you´d been through!

    Can´t believe it, it´s amazing.

  3. Steve,

    I’ve been reading your story over the last few months. Incredible and gut wrenching circumstances.

    Have you considered turning your writings over to a screenwriter? This could, easily, be made into a movie and get you some revenue, I would think.

    Just a thought.

    Glen

  4. hi steve.. I’m sorry I never noticed this story before.. man what you’ve been through! what a brave man you are and such a fine musician and giving person.. maybe that’s why you are so generous.. you have the inside on what it means to live.. what little time we have and how best to use it.. and how to look at life positively because we just never know.. you have my full admiration and my hope that you will finally have it ALL behind you.. God bless 🙂

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