As Funny as a Brain Tumor! Part 9

Ok,  I have my emotions contained again and can go on with my story…….  After the neurosurgeon told me I couldn’t play the saxophone ever again, I think I was in  shock.  I didn’t know what to say or how to feel.  After a short while, I started feeling this heavy feeling of sadness coming over me.  I remember my friends and family coming in and trying to cheer me up after I told them what the doctor had said. 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 jokingly suggested neurosurgery  but nothing they said lifted my spirits.

The next day, another surgeon 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 surgeon had said about never playing the saxophone again and he confidently told me that he would operate and fix my eustachian tube so that I could continue to play my sax.  He told me he had worked with many professional musicians over the years and he understood how I felt and would do whatever it took so that I could continue to play the saxophone.  I was very relieved after talking to him and started to feel more optimistic emotionally.

A few days later,  I went in for the surgery to seal up that pesky eustachian 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,  half my head was shaved and I had that darn bandage on my head again.  The ENT doctor, who performed the surgery, came in and  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 in there, but I’ve gone back to him a number of times over the years because of headaches and other symptoms 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 might be.  I began thinking about questions like “What’s God’s plan for me here?  Does he want me to learn something?  Why is this happening to me?  God, why are you doing this to me?  God, can I just have a break here?”   I through a lot of these questions up to God in prayer but I didn’t receive any answers at that time.

I will tell you that by this time, I was starting to worry about the number of CT-scans, X-rays and MRIs I had been having.  They say they are perfectly safe, but every time I had one the technician would run out of the room before hitting the “start” button like a bomb was about to go off so this made me a little nervous.  I started thinking about all the tests and scans I had had (probably about 12-15 is my estimate). I remember joking with my friends that I hoped I didn’t get cancer from all of these medical scans I had been having.

You probably can guess what’s coming next……., about a month after my second brain surgery,  I was following my normal routine in the morning.  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 let’s just refer to that area as my “privates”.  Anyways, as was my habit in life, I decided to ignored what I had just noticed.

A few days later however, I was again taking a shower and that same area I had noticed before seemed even larger and harder.  At this point,  I became more concerned.  I got out of the shower and went in to my roommates room where he had a big medical book of symptoms and their diagnosis (this was before everyone had Google).  This book was huge.  I looked up the word “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” by now anyways……..).  I found two  medical choices that I could choose under that subject.  One, was a growth that had intense pain associated with it and the diagnosis was testicular torsion.  My brother had that at one time (I hope you don’t mind me sharing your medical history Bro……) and he said it was the most painful thing he had ever experienced in his life.  I had no pain…….so I concluded that I must not have that.  That led me to choice number 2: Growth and no pain……diagnosis: CANCER!!! (the capitalization and exclamation points were not in the medical book but I added them to spice up the story and honestly, that is how I read the word CANCER!!! in my mind at the time)

“WHAT????!” I thought as I sat there staring at the book in disbelief.  It was funny, because part of me believed that 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 thinking  how strange this was. (No, the tumor wasn’t back, it was just that freakin’ ironic.)

Well, you guessed it, my next stop was Mass General Hospital Emergency room.  I drove myself this time. MGH was my home away from home by this point.  I pulled up to the curb and the valet came out and said “Hello Mr. Neff.  Back so soon?  It is great to have you visiting us again. Your room is prepared for you.”   By this point, most of the people working there knew me by name.  I had my own room and gurney with my name on it.   Even the janitorial staff knew me by name! (Ok, yes I’m joking and 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 and discovered that there was indeed an abnormal 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 asked if they could just do a biopsy to see what it was first and he said that was too dangerous and that by doing a biopsy it could cause it to spread.   So it looked like I was surgery bound again……..

I called my parents after I found out the news.  I remember my Mom answering the phone and it was amazing because I didn’t even say anything.  All I said was “Hi, 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 a 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 calling me this. The cliff notes are basically that Job had a very rough life with what seemed like an endless cascade of very bad things happening to him……)

The surgeon at MGH operated a few days later and took the one testicle out.  I won’t go into details but I’ll give you the same line I gave my wife when I saw her after the surgery and she asked me how I was feeling……….I replied “Let’s just say, I’m half the man I use to be and I feel half nuts!” (I worked hard on that line while waiting for the surgery)  If you don’t get it……Well, think about it some more…….

After the surgery, the doctor followed up with me and told me that the growth was indeed cancerous. Not only was it malignant, but the tumor was a very aggressive form of cancer and he strongly suggested that I needed to take radical steps to make sure it didn’t spread.  By radical steps he meant taking out half of my lymph nodes on one side of my torso to check them to see if the cancer had spread to them yet(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 doctors said that I just said “OK” and resigned myself to being “gutted” like a fish.

I was keeping my Mom and Dad updated by phone throughout this new medical dilemma and I remember telling my Dad what the doctor wanted to do. He immediately responded in typical “Dad” fashion by raising his voice and yelling “WHAT???!!  THAT SOUNDS CRAZY!  Did you get a second opinion?”.  I hadn’t, but honestly I didn’t really want to see another doctor at this point.  I was just plain tired of this whole scenario.

My parents hopped in their car and came out to Boston within a day or two.  My Dad  talked to the doctor and I remember him really pushing for a second opinion.  Finally,  the doctor he was talking to relented and suggested a colleague of his.  I ended up getting another opinion from the other doctor which was one of the best things I ever did.  This new doctor felt that it was better to take a “wait and see” approach.  He would  have me come in every three months for checkups and blood tests to see if the cancer had spread and if it did then they would take action then.

I decided to go with his advice and I didn’t have the surgery and chemotherapy.  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! (cross my fingers…..) I am so glad I didn’t have that surgery to remove those lymph nodes!   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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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 Sonia Dickson says

    Wow Steve, You’ve really been through it all. It’s amazing you have such a sense of humor about the whole thing and that you aren’t bitter at the entire world.

    You are amazing.

  2. The ENT doctor that Steve is referring to was the same Dr. McKenna that I mentioned in an earlier comment. I remember him telling me that he really understood Steve’s anguish and that he was going to give Steve his “super-duper patch” that he guaranteed would never let loose. It hasn’t.
    Steve’s mother and I did indeed drive (not flew)over for the testicular operation. When the first doctor described the lymph node operation (he informed us that they would have to remove the intestines, obtain samples of lymph nodes for biopsy,and then put the intestines back ), my immediate reaction was to once again, only this time quite STRONGLY, suggest a second opinion. Thank God, the second doctor (an oncologist) recommended a much simpler approach utilizing blood tests and looking for a “marker” that would tell them if the cancer was indeed spreading. As Steve says, it was the right choice.

  3. Avatar Joe Molinaro says

    Damn again, what a horror story, luckily and hopefully your old man made the correct decision!!!!!!!!

    And again, I am not totally surprised, relative to your fathers insistance on a second opinion, something I would have insisted on.

    May the Lord be bless you all!

    Joe M.

  4. Hi steve, I am just was wondering if you still kept your believe in God after all you have been through?

  5. Yes, I have. It has actually been strengthened through out these ordeals. It was during these times that I was praying more than ever for strength. My prayers were never centered on asking God to heal me or give me some particular outcome but I tried to mostly pray that I would have the strength to handle what ever happened. I’ve always believed God is good and that he loved me so I knew that whatever happened then, now and in the future has a reason for it. Most of the time I can’t see or guess that reason but I try to keep the faith that there is one. I will say that all these experiences have good ending for the most part. Later in the story I will talk about my headaches which were chronic and those in many ways were the hardest test because they were chronic. i have the most respect for people with chronic illnesses. It takes a lot of strength to deal with those on a daily basis and just get to the next day…………

  6. Avatar Kirk Tucker says

    Steve, I happened on your website by way of searching for some reviews of soprano sax mouthpieces. What a surprise to find wonderful sax lessons offered and other interesting items. Even more of a surprise was to read your blog, especially “funny as a brain tumor”. Having been through a major surgery and 6 months of chemo myself recently I feel very blessed to have discovered a kindred spirit and all that you have shared of your personal journey brings me hope and a lot to look forward to as I enjoy your sax instruction offerings. I have downloaded one lesson so far and am eager to try more. Your lessons are perfect to help me stay focused and continue learning sax in spite of living in Central Thailand where sax instructors are very rare. Thanks so much for your healing message. Be well and I look forward to continued sax instruction.

Trackbacks

  1. […] “I can totally understand how you feel.  I play bass in a hospital band and really love it also.  If I had to give up bass playing, 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. […]

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