As Funny as a Brain Tumor! Part 6

I’ll do my best in this next part of the story to recount things in the proper order.  To be honest,  the next few parts of the story are a little vague and cloudy in my memory.

I remember meeting with a Doctor to have the talk you have before a major surgery.  His name was Dr. Harsh. (I thought that was a funny name for a surgeon) He basically laid out the entire plan for me, the options and the things that could go wrong. I remember thinking while he was talking ” Man, Dr. Harsh is harsh!”   It was a hard conversation to have.  Basically, he told me that they wanted to take the tumor out by going through my left ear. Part of the surgery would take about five hours and they would cut around the top and back of the ear, cut through the skull and take out my inner ear.  They would then wrap me up and a few days later go back in,  lift up the left side of my brain and go underneath it to cut out the tumor.

Now as you know, I had been a musician for most of my life.  I was very concerned about losing my hearing in one ear and asked if there was an alternative way to do this so that I could save my ear.  Dr Harsh said there was,  but it was much more complicated and dangerous. It involved going through the back of my nose via my face. While he was talking about the dangers of that frontal procedure (including death and disfigurement),  I interrupted him and said “That’s OK, I’ll lose the ear”.   I figured I would still have one good ear and that would be better than being dead or having scars all over my face.  He said he thought that was a good decision on my part…………

Dr. Harsh then went through a list of things that could go wrong during the removal of the tumor.  The big word that stuck out to me was DEATH.   He said there was a greater risk of other problems but DEATH could result also.  The tumor was in an area where there were a number of cranial nerves  as well as a main artery and there was a chance that these could be affected in some way. The cranial nerves affect things like:

-Sense Impulses through the body

-Chewing

-Equilibrium

-Vision

-Facial Sensation

-Hearing

-Respiration

-Salivation, Swallowing

-Smell

-Taste

Not a good list of things to have messed up.  (Especially, if you are a person who makes his living from playing the saxophone……..) He also talked about the chances that I could have paralysis of the face in some way.  He told me the total operation would be about 18 hours long.

At this point in time,  they weren’t sure if the tumor was malignant or benign.  They would know that only after the surgery was done.   Of course,  if it was malignant that would mean chemotherapy, radiation and all that but I didn’t want to think about that just yet.  I had enough to worry about right in front of me.

At the end of my less than pleasant talk with Dr. Harsh,  I had to sign a paper that basically said I agreed to the surgery and wouldn’t sue the hospital if I died on the operating table.  I told him “If I die on the operating table you won’t hear from me again” (My attempt at being funny).  He didn’t laugh.  On the way home, I just kept imagining waking up with my head cut open and these guys poking my brain.  I had that nightmare a lot over the next few weeks.

I went home that night feeling a bit numb about the whole thing.  All my friends were asking me how I was doing and what I was feeling.  They thought I was in denial I think.  I just felt kind of numb to the whole thing. I remember praying a whole lot during those two weeks.  I remember that I didn’t feel scared at all about dying.  I believed in God and I believed  in an after life.  I believed that I would go there if I died.  I just thought that if that happened I would go under for the surgery and wake up and be in heaven if I died.  All things considered that’s a pretty good way to go. It’s like dying in your sleep.  The thing that was more scary to me was having some of the other problems the doctor had talked to me about………paralysis, hearing problems, speech problems, vision problems………..I remember praying to be surrendered to whatever God’s plan for me was. I prayed that God would give me the strength to deal with it no matter how bad it would be.  (Of course, I also prayed that it wouldn’t be that bad!)

For those two weeks, I just hung out with my friends and family.  My parents and brother came out to be with me.   I was spending a lot of time with my friends everyday.  The last night before the surgery, they all had a little get together for me in my apartment in Watertown MA.  There was about 40 friends there from my church as well as musicians and convenience store coworkers as well as my family.  They all shared about what I meant to them and the impact I had had on them. It was a pretty emotional time.  There were many tears shed (of course I was laughing the whole time don’t forget).  I remember thinking at the end of the night that if this was my last night on earth then this was a pretty good way to go.  I don’t think there was anything left unsaid.  I told everyone I was close to how much I loved them and how much they meant to me and they told me the same.  I felt very supported and loved and ready to go in for the surgery.

The next day thing really get a bit crazy. My parents were there and were a major support to me. They were there for each step of it.  I remember talking to my Mom a lot and my Dad acted like he was running the hospital.   I wouldn’t have been surprised if during the surgery my Dad was  right in the operating room looking over the Surgeon’s shoulder critiquing his scalpel usage.  You think I’m joking but my Dad was very concerned and involved in the whole process. I don’t remember this, but my Dad told me that at one point as they were bringing me in for surgery two doctors in the hallway started arguing with one another about who was going first.  I don’t know what my Dad said to them but I know he was quite mad and spoke his mind because of what he perceived as a disorganized mess while his son’s life hung in the balance.  Anyways, I will always be grateful to have had my parents there watching my back.

They rolled me in for the first surgery that was to open up my skull and clear out my inner ear.  This was in preparation for the later surgery that would take out my brain tumor.  They asked me to count down from 100 as they put the mask over my face.  I made a mental goal to get  to 90 before I went under. 100,99,98,97…………..gone.  My concentration and willpower wasn’t enough to overcome the gas…………..

The next thing I knew, I woke up in some big room with stuff attached to me all over.  It’s weird when you go through this because you feel like time hasn’t moved.  Moments before,  I was laying there counting down from 100 and now I was waking up in what seemed to be seconds later.  When I opened my eyes,  the room was spinning like crazy.  I mean it was spinning all over like when you get off one of those rides at the amusement park.  I immediately felt nauseous and started throwing up.  I remember throwing up a lot during those next 12 hours. I don’t know if it was the affects of the drugs or motion sickness from the room spinning.  I tried to keep my eyes closed most of the time because every time I would open them I would lose it.  This was without a doubt the worst I had ever felt in my entire life!

The doctors came in and said that the surgery went well and that the spinning I was experiencing was from having had my left inner ear taken out. Your inner ear helps you with your equilibrium and balance so that made sense.  For a couple of days I felt absolutely horrible. Man, did I have a headache!  I just kept touching the bandage around my head while I waited for the next surgery to happen.     We’ll get to that in………..Part 7

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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. Steve is correct when he says that I was extremely upset. Mass. Gen. may be one of the best hospitals in the world, but their communications were awful. Fortunately, the one doctor that I really liked (eyes, ears, nose, etc. – he did the part of opening Steve’s ear for the main operation), Dr. McKenna, came to see me at one point to assure me that even though it looked like they weren’t talking to each other (and believe me, it did look that way) and that they appeared to have better things to do at critical points in this whole affair – remember, it was 11 days start to finish – Steve was indeed in the best of hands and that everything was in order. This is one conversation that I will never forget and for which I am eternally grateful to McKenna.

  2. Avatar Doug Fuegel says

    Steve, I think I remember you as a youngster perhaps on one of my visits to y9ur Dad’s house, anyway you touch us mightly with your blow by blow descrption of events; when you said it appeared you Dad was taking over the hospital and running things I was not surprised one bit, I have know him for maybe thre decades plus. Our prayers are with you..

  3. Hi Steve: I am an old friend of your fathers for many years. I am shocked that I had no knowledge of your problem but knowing your father somewhat, he never spoke about family problems. As far as his aggressive involvement in your medical case, I am not surprised!
    Needless to say, what a ride, luckily your Dad and the Lord was driving the bus!!!! Maybe you should consider a book, this was better reading than many books I have read and I can’t wait to hear more.
    The best to you and yours, ciao, Joe M.

  4. Hi Steve, I am just a random person reading your blog since I just got into playing the sax and found your website and have been mesmerized by your account. I was really happy to see your update because I had gotten worried when there was nothing for about two weeks. Am thinking about you and hoping that everything miraculously turns out great. Also, I think it’s incredible how you’ve been sharing this whole very personal story – you are a definitely a great writer and have a fabulous sense of humour about all of this – I like your take on life. Sending lots of positive thoughts your way.

  5. Avatar Susan Forbes says

    I am finally getting to read your account. Your mom said to read one or two at a time but I’ve devoured six in one sitting and am mesmerized.

  6. Hi Susan,
    Great to see you here. Yeah, it takes some time to read them all. I hope things are going well for you and the family in Maine. It’s been awhile since we’ve seen each other.

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