As Funny as a Brain Tumor! Part 12

Well, I’ve been putting this off long enough!  To be honest, writing this part of the story is not something I feel very excited about.  There are a few reasons for this.  One, it’s not funny (well maybe a little funny).  Two, it brings back some painful memories.  Three, it doesn’t paint me in the best light. Four, it brings up some hard to answer spiritual and emotional topics that are hard to deal with.  Five, I cry like a baby in it. Six………………Well, I could keep going, but I think you get the point.

You might ask “Well, why are you sharing it then?”   I would respond  “Because it is part of the story and as painful as it was, there are millions of people out there that have gone through something this painful and millions more that someday will.  I’m not sure if my story has any answers or cures to life’s woes but I know there is a certain consolation in sharing these stories with each other and knowing you are not alone.  Sometimes just knowing that someone else has been through something similar to your situation is enough to give you the courage to keep fighting.”  That’s why I’m sharing it.

Up until this point in my story I have been pretty strong in my opinion.  I had held it together and gotten through these difficult life challenges with my head held high and somewhat still optimistic. After the first set of ordeals (brain tumor, meningitis and cancer),  my life was better in quite a few ways.  I felt grateful to be alive,  I was optimistic about the future and I thought the worst was behind me.  I met my wife and we even worked together in a Christian ministry for 2 1/2 years as I trained to be a minister.  Life was good and I could see a reason for the difficult things that I had gone through to get where I was.  When you can understand the reason and see a good outcome to a hardship it makes it so much easier to accept and surrender to.  You would think, that as I sat in my hospital room that night, I would be able to reflect on these thoughts and be resigned to what the future might hold.   I was not.

I left you in Part 11 on a Saturday night.  My family and friends that came to see me had all left and I laid in my bed very afraid of what would happen to me next.  I remember praying diligently that I would be strong enough to deal with the road ahead.  I honestly did not sleep one wink that night.  My skin hurt all over like a really bad sunburn and I was starting to itch all over. That, coupled with the fact that the hospital ward I was in seemed insanely loud and chaotic.  I don’t know if it was the burn unit or what, but I remember constant crying, screaming, yelling and alarms going off all night long.

The next day more friends and family came to see me.  Most people acted pretty discreet but one very Italian friend of mine came in the room and exclaimed “Good God, Steve! What the heck happened to you?”  In a thick Italian accent. (Imagine an episode of the “Sopranos”)  During the visit he kept shaking his head back and forth and staring at me.  By this point, my skin was beat red (or is it beet red?) and was starting to all peel off.  I had flakes of skin all over my face, neck and chest peeling off.  I made it through that Sunday and was so tired I was looking forward to forward to falling asleep that night.

Sunday night was the same as Saturday.  More screaming, yelling, crying and swear words flying around the halls.  I didn’t sleep a wink.  I even asked for something to help me sleep which they gave me and I still didn’t sleep a wink.

Monday I was even more exhausted!  More friends came to see me but I remember feeling like I didn’t have any energy to talk.  That was one of the few days where I had friends there and I just turned over and went to sleep.  Usually, I would feel like I had to talk to them but that day, I just didn’t have the energy.  I was so tired!

Along with my friends, were the visits from the doctors and medical interns.  One doctor would come in with 5-6 medical students trailing on his coat tails.  The doctor teach them all about my Toxic Epidermal Necrolysis like I wasn’t even sitting there and then the students would ask me all the questions they could think of. Usually, they would ask me a bunch of questions about my history.  They usually stared at me like I was a medical student’s dream patient because of my exciting and varied medical history.   I made it through Monday and was hoping I would sleep that night.  You guessed it, I didn’t.  Not a wink.

By Tuesday,  there were little black dots appearing all over my skin.  The doctor and crew of interns and medical students came in to see me on their tour of patients. “These black spots appearing all over his body are a sign of the the lower layer of the skin separating from the body before it would start to slough off” he taught his eager students while holding up my arm for them all to see.  I’m telling you this as I remember it, so if I’m mistaken about the exact medical terminology I apologize.

I was extremely tired by this point.  More tired than I had ever felt in my life.  Until this point, I had been on an IV for four days because they were pumping fluids into me to keep me hydrated.  I’d been sitting in my bed for quite some time and at one point decided that I needed to go to the bathroom.  I slowly tried to get out of bed and as my feet hit the floor and I tried to stand up something felt very wrong. The middle section of my body felt very heavy and I had trouble keeping my balance.  I moved my hospital gown aside and looked down into my briefs and almost passed out.  I didn’t recognize what was between my legs!  It was this gigantic swollen mass of “something?”.  I don’t know what the Elephant man’s private parts looked like (nor do I care to know) but if I had to imagine, this is what they would look like.  Let’s just say, I freaked out!  Maybe it was the lack of sleep but I felt like I was on the brink of insanity by this point.

My wife walked in a few minutes later and I frantically told her I had to show her something.  As I moved aside my hospital gown and pulled down my briefs I’m sure she was thinking “Steve, really? We’re in a hospital room and your skin is falling off!  This isn’t the time!”  Once she saw what I was frantic about, she did what any caring and loving wife would do……….She burst out laughing!!  She must have laughed for a good couple of minutes.  I kept telling her it wasn’t funny but she was laughing so hard I don’t think I was getting through.

I called a nurse and told her I needed to see a doctor immediately.  A few minutes later a doctor came in and I showed him the object of my concern and he said “I can see why you are concerned. I would be too!” (he was considerate enough to not burst out laughing like my wife had)  I felt like I was in a Saturday Night Live skit or something.

The doctor explained to me that the IV fluids seemed to be draining down to the lowest part of my body and gathering there.  As I was sitting in bed, that lowest part was my groin area.  It was not an emergency. They would take me off the IV and the area would return to normal.  I was much relieved about that.

That day, I had another talk with my doctor and was feeling quite agitated.  I hadn’t slept in 3 days and I had this strong feeling that things were slipping away from me.  I asked him where this was all going and what I should be expecting.  He told me that they didn’t know and that I just had to wait and see. This could be one of those cases that is the worst case scenario or it could just turn around at a certain point.  As I was thinking about my batting average so far, I was not very optimistic!

Now, if you were to ever meet me and ask me “Steve, what was the lowest point in your life?”,  I would immediately answer that it was that Tuesday night in the hospital.  I wouldn’t even have to think about it.  That was it.   That night I decided that I wanted to try to take a shower.  I hadn’t had one in 4-5 days and I needed one.  I was exhausted, but I felt that it would be good to get out of bed and focus on a task. I walked down the hall and into this little side room to take a shower.  I turned on the hot water got undressed and went in.

I’m not sure what happened in that shower,  something came unhinged in my mind or the emotional floodgates let loose.  I just stood there with the hot water spraying on me and thought about my life,  all that I had gone through and what I was going through now.  I thought about my wife,  my one year old daughter and my second daughter about to be born in a month.  As I was thinking about these things, I felt this heavy weight of despair come over me like nothing I had ever felt.  I mean it was heavy.  I just had this strong sense that I was going to die.  Not only did I feel like I was going to die,  but I felt that God hated me and wanted me to die!

I know those of you that are church goers or have a belief in God will feel shocked by those words but that is how I felt at that moment. To be honest with you,  it was more than a feeling to me.  I knew these things!  I knew it as certain as anything in my life. I stood in that shower convinced that I was going to die very soon and that God was out to get me and make my last days on earth a living hell!

I starting sobbing.  I mean I lost it!  I have never cried so hard in my life! I fell to the floor and just sobbed uncontrollably who knows how long.  It didn’t stop.  I tried to get myself together and walk back to my room but I just kept crying.  All the way down the hall.

When I got back to my room, I called my wife.   I was crying and sobbing and rocking back and forth.  I was trying to tell her that I was going to die and that I was cursed. I kept telling her I loved her and my daughters.  She kept trying to talk to me and help me be rational but I was gone.  I don’t think I was really listening to her as she told me that things would be OK and God loved me.  I was convinced otherwise.  At the end of the conversation, I asked if she could call an elder in my church and have him come talk to me ASAP. I felt like I needed to talk about this stuff before I died.

I went to bed that night not hopeful that I would get any sleep and sure I would be dead within a few days.  Part 13………..

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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, I am sorry you went through that. You know I tried to be there as much as I could be. I remember being in constant emotional pain over the thought of your ordeal. As a younger brother I could not understand why God was having you go through all of this. I was afraid of losing you. :(I felt helpless. Just know how much I loved you and love you now. Your a blessing to me!!!

  2. Your really making me miss you all for Christmas!!! Merry Christmas!!

  3. Avatar Joe Molinaro says

    Hi Steve:I hope on Christmas you felt better!

    I still consider you a strong person.

    Hopefully things have improved, waiting to hear, eventhough I was, as usual, somewhat behind in reading my mail!

    Bless you and yours and let us all hope for a better year, my wife has had a stressfull year as well but no where near as bad as yours!

    Joe Molinaro

  4. Avatar Susan Forbes says

    Whew! What a place to stop the story and have no more at this time: your lowest point by your own admission. Well that makes people like me just stew in that perspective for awhile and not just go past it in a matter of seconds.
    I told a neighbor person about your series of postings, in particular the title and she thought it was great. She has had a malignancy for several years now and things are pretty tense increasingly. I think she would appreciate your story.

  5. Sorry to stop there Susan. I struggle with tendonitis off and on and my right arm and hand were starting to have some major problems so I had to take a break. They feel better this week so I hope to post the rest soon. I have a doctors appointment tomorrow and I’ll see what he says.

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