As Funny as a Brain Tumor! Part 7

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 my nerves, arteries and not to mention my brain.

I also didn’t know if the tumor was malignant (cancerous) or benign(non-cancerous).  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 anesthesia……….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 a surgery taking that long but there were a few surgeons involved that all had different duties in the surgery so I would imagine they all take turns.

Next thing I knew,  I was waking up.  It was like I had just fallen asleep a moment ago.   Now this may sound a bit strange, but I’m going to share it because it really happened and I want to be as factual as possible here.  When I started waking up I was in a big room where they put all the patients after surgery.   The lights looked funny to me, like they were old.  I looked around me and it seemed like the medical equipment was also old.  A nurse came over to me and she was the happiest nurse I had ever seen in my life.  She had a big smile and her clothes seemed like clothes you would see a nurse wearing in the 1950’s. All of a sudden it hit me…………I had been transported back in time to the 1950’s!  You might think I am joking here but I really thought I had traveled back in time!    I was giving it such serious thought,  that I was actually thinking of all the things invented since 1950 and trying to figure out what I could make tons of money with (Not to mention heading down to Rayburn’s and buying some brand new SBA and Mark VI saxophones!!!).  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 the urgent question in the forefront of my mind “What year is it?”  She looked at me curiously……… “What year is it?” I repeated.  She answered “1995, why?”   I responded slowly “Are you sure?”  She said  “Yes” and my parents exchanged 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, time travel was the only reasonable option that made sense of all this.  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 (non-cancerous). 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 in between a main artery and my cranial nerves. The Surgeons thought that it was too dangerous to 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. That might have been because I felt so awful though.  We would see……….

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

The next week in the hospital was a nightmare.  If you’ve stayed in a hospital for any length of time you will understand what I am about to tell you.  You can’t sleep, there is constant noise!  You have a life threatening surgery and now is the time to rest, recoup, get back on your feet.  What happens?  You can’t sleep!  All you hear all night long is alarms going off, patients crying, patients screaming, patients yelling at nurses, nurses yelling at patients,  nurses talking in the hall about doctor so and so and who’s dating who…………..You FINALLY fall asleep,  and then a nurse comes in and wakes you up and says “I have to check your stats!”  AGHHHH! After a week of this, I was losing it. (I have nothing against nurses by the way, I ended up marrying one later in this story)  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 very tired!

They finally let me go home.  I felt awful in one sense but kind of excited 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 managing 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 far to the right and directed my eyes up a little I could see single.  I started walking around with my head tilted far 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 remember very clearly, was the difference between hearing music in stereo and hearing music in mono. I noticed this the most when I first drove my car after the surgery.  I had a really nice Lexus GS300 with a killer BOSE stereo system in it.  Before the surgery, I would love driving that car around and listening to music. It would sound amazing 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 BOSE stereo was broken.  I messed with the controls a bit but the sound didn’t get any better.   It sounded dead!  Flat! Hallow! Diluted!  I realized that this was how I would hear music for the rest of my life and I was so depressed. 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.  I was a musician! It was one of the things that I loved the most in the world and now it would never be the same for me.

Now, on the positive side of things……… you might remember earlier in the story,  I said I had no health insurance.  I think God was really looking out for me because I took that job as a manager of a store and got insurance a few months before I was diagnosed with the brain tumor.  The insurance covered most of the bills from the surgery and everything that that entailed! A few months later, I was attending a management meeting for the company and the administrators were talking about how the company had really blown the budget for 1995 with their health care costs being about 300,000 over budget that year (the company was self-insured).  One of the managers looked over at me and in a joking way said “Thanks a lot Steve!”.   Everyone kind of chuckled about that but it was a sobering moment for me.   I don’t know how much all those bills added up to but it must have been in the hundreds of thousands of dollars.  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 that they need to get health 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 three years.   I started playing and in moments my fingers were flying all over the keys.  I hadn’t played that fast and that well in a long long time.  It also seemed like I was playing ideas that hadn’t occurred to me over the last few years.  I  just remember improvising on a song and being amazed at what was coming out.  To this day, I wonder if maybe the tumor was blocking or effecting my creativity in some way also during those years.  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 eight 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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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. Avatar Melva Neff says

    In addition to the brain surgery – Approximately 3 days after the ENT surgery when the left ear was removed to get to the tumor, there was a vascular procedure called emboliztion that lasted a couple hours to inject a substance into the vessels leading to the tumor that effectively killed the tumor. The substance was like glue and therefore did not allow blood to circulate to the tumor. This made it easier for the neurosurgeon to remove the tumor because it was harder and more defined in that state. This of course is not exactly the professional wording, but that is what the Doctor who did it explained. By the way, it was the Embolization Doctor who was upset because he thought he was first. It all worked out well, but Steve actually had 3 surgeries that week for a total of over 19 plus hours of surgery. The actual removal of the tumor took about 12 – 13 hours as I remember it. His father and I were walking around the streets of Boston until we got the call from Dr. Harsh that it was over and it was a success! Of course for us time practically stood still. A little addendum – Dr. Harsh was in his middle forties and he promised us that our son would be “his life” for 48 hours during and after the surgery. That was very reassuring. He said that surgeons that were much over that age did not have the stamina to operate for that long. We were sure appreciative of his health and stamina.

  2. Avatar Gerardo Avila says

    What an amazing story….I think we all can’t wait to read the “next chapter” every week! After knowing this I feel more respect for Steve. Good bless.

  3. Haha funny story and I’m glad you’re safe and healthy! A friend of mine who is literally a genius (IQ of 160+) found out he had a brain tumor that had to be removed and I was hoping for him and it went well too. Thank God in both cases. If you went we’d be missing a great saxophonist! If my buddy Ben went we’d miss the guy who found the cure for brain cancer someday!

    Man, I wish I felt like I was in the 50’s. Send some of that drug over! I’d be the happiest cat alive! I’d go to the local music store over time and see Mark Vi’s for $175, Slant Sigs for $15, Double Ring Links for $20….*drools*

    Happy Halloween and thanks for sharing the great story!

    Regards,
    Michael

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