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 (I actually had bacterial meningitis two times in the summer of 1996 but forgot that while writing this story and only found out later when looking at my medical record.)  The second brain surgery in September of 1996 and testicular cancer and testicular surgery in October of 1996.

Now, at this point in my life, I do experience a bit of a reprieve from my medical 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 after that, 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 never mind………).

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 behind because it was in an area too dangerous to operate on. (Remember this photo from Part 7 of the story? Look at the part that says residual tumor)

MRI showing the remnant of the tumor that was left behind after the surgery from Hal Blumenfeld’s book “Neuroanatomy through Clinical Cases” that I found about in 2019

  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.   I was just as surprised as she was 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 four 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!”, I reassured her.  (This is the statement that probably jinxed me!)

My Surgeon back in 1995 had said that the follow up after the tumor surgery would be to come back to MGH every year for five years for an MRI just to check that the tumor remnant wasn’t growing.   I had gone for four years and the remnant of the tumor hadn’t grown at all.  I had also gone back to check about the testicular cancer every three months, then every six months, then once a year.  The cancer never came back or spread.  In my mind, I was in the clear.  No cancer and no growing brain tumor.  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 and story.  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 surgeons that had operated on me, Dr. Enzio 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 five years since I had seen him.  He immediately remembered which surprised me.  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 four years but was overdue for my fifth year follow-up 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 see me.  The red flags immediately went up.  Over the last four years of MRIs,  I had never received a single phone call let alone having the doctor wanting to see me. Usually, I would get a letter in the mail weeks later saying everything looked fine or sometimes I would not hear anything back which I took as 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, the doctor can never see you immediately, they make you wait with unbearable anticipation and dread for a few days until he is available.

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 MRIs and how they compared to the first MRI after the surgery in 1995 and I could indeed see a small solid mass in the middle of the film that was bigger.  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 a single guy 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 at stake this time.

Dr. Chiocca referred me to another doctor that he wanted me to see that specialized in treating tumors with radiation. They had left this small piece of the tumor in my head in 1995 because it was too dangerous to take out with surgery.   Now that it was growing again, it was still too dangerous to take out.   The best course of action would be radiation.

I went to see this new doctor with my wife and we talked about what this course of action entailed. 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 three small metal BBs at 3 location in my skull.  They would then take a multitude of CT-scans to triangulate the exact position of the growing tumor in relation to those three BBs.  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.   Cool, right?

As you can imagine, there could be no movement while this was going on as frying the wrong thing inside my brain would not be a good idea. So to avoid movement, I would be unconscious and would have three large screws from the machine screwed into my skull so it would be  impossible for me to move. Sounds fun doesn’t it?

I’m not sure how exact my description is of how this 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) My treatment would have to be at one of three proton beam radiation laboratories in the world.  Luckily, there just happened to be one across the river from MGH at the Harvard Cyclotron Laboratory.  I was relieved that I didn’t have to have another surgery but I was pretty nervous about this “proton beam radiation” procedure all the same.

At the end of this conversation with the proton beam 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 confidently, “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 three months pregnant.  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 six month time of our lives featuring her side of the story) 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 three 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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