Posts Tagged ‘brain tumor’

The next morning, our last day in Disney, I woke up to my kids talking to each other.  I sat up in bed and just looked at them.  There voices sounded normal.  I couldn’t believe it.  Matter of fact, I didn’t believe it. I put on the radio, it sounded normal. I was so excited and happy but I still didn’t say anything to my wife because I was afraid I was mistaken.  What if it was still messed up?  About 15 minutes later I told my wife. I then shared with her the whole story about the prayer I had prayed.  She didn’t seemed impressed.  I was shocked and in awe that God had actually performed a miracle for me and answered my prayer.  She just smiled and said “Of course, he does that all the time”. I just looked at her amazed at her faith.  ”Not like this” I said.  We went home later that day and I was one happy camper.

For the last 5 years things have gone pretty smoothly.  Normal life stuff. Nothing to write a blog about.  I’m happy about that!  I don’t know the why behind all the things in this story and I doubt I ever will but part of me thinks this last story was  so very important to me and my journey.  You see as you could probably tell as I told the story, I was growing increasingly more and more negative.  Many times I doubted if God existed .  Other times I thought “Well if he does exist, he’s kind of a jerk”.  Other times I thought “Well if he does exist, he could care less about me”.   For me this last act was huge.  I know many of you who are reading this might be thinking it was just a coincidence and God had nothing to do with it.  I just happened to pray that prayer the night before my hearing was to return to normal.  Believe me, many times I have even thought that myself.  But I keep coming back to that prayer that I said.  I laid it all out like I never had before.  I told him that if I were to see him work immediately then there would be no question in my mind.  He did exist and he does care about me. He is involved in my life and working and moving.  The next morning, I woke up and was cured.  You might think it was a coincidence but I like to believe it was something else.
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Hello again.  No I didn’t die.  I’m sorry for the delay with this chapter but every once in awhile I have a problem with tendonitis in my arms and have to take a break from typing for them to get better.  I feel better now.  OK,  where was I…………..

I woke up the next morning and was surprised to find that I was still alive.  Not only was I alive but I actually felt better!  I think it was because I had finally slept that night.  For the next couple of days the doctors kept and eye on me to see how far the allergic reaction would progress but it looked like it had stopped and that I might be OK.  They released me a few days later and I went home.  I still had this feeling like something was around the corner and I wasn’t out of the woods yet.   When you have been through so many health issues you start to get a bit paranoid that every little bump,pain or weird thing is another deadly illness.  I drove my wife crazy with all of my concerns and questions during this time.

A couple of weeks later, I noticed that there were what seemed like large bumps in my neck that I had never noticed before. Another question to bother my wife with……. My wife took a look and she said that my lymph nodes were really swollen and enlarged.  We called my doctor and of course she gave me the advice she always did back then………”Go to the Mass General Emergency room”.  My doctors would always give me the line “Considering your medical history you should go to the emergency room………better to be safe than sorry.”

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Well, I’ve been putting this off long enough!  To be honest, this part of the story is not something I feel very excited about telling.  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 that as painful as it was, there are millions 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.  I had held it together and gotten through these different 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 things that I had to go through to get where I was.  When you can understand a 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.  Even reminding God of that scripture where he says “I will not give you more than you can handle” ( In case he forgot that promise………) 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.  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.
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After the Proton Beam Radiation treatment I quickly jumped back into things.  It was about a month later,  that I was on a gig playing my sax when I got this excruciating pain in my face.  It was a sharp pain that was in my jaw.  I had to stop playing my solo and I just held my jaw for a second and then it went away.  It happened a few more times that night and would last a few seconds and then go away. The next day it happened some more and I noticed that my tongue was numb and tingling. Sharp face pains and a numb tongue make it difficult to play the saxophone in case any of you are wondering.

My wife and I headed back to the Proton Beam  doctor to talk about these new symptoms.  He listened intently and responded that he thought the radiation treatment was affecting my cranial nerves.  Now if you have read “Part 10″ you will remember that this was my one and only question that I had asked this doctor.  Could this radiation affect my cranial nerves?  Remember that?  Well, I did!   I was a bit bewildered  by his analysis and brought up that he had told me this would not happen.  He replied that in a small amount of cases it does (You would think he would have mentioned this before before when he told me it never affects the cranial nerves!).  It was at this time that I started to believe that if a doctor told me that the prognosis was 99% good but there was a 1% chance it would be bad that I would fall into that 1 %. I didn’t really have a strong faith in the percentages by this point.  If the bad thing had a greater than 0% chance of happening that was enough to include me.

The doctor prescribed Nuerontin to me to help me with the face pain.  Within a few days I started getting a rash on my chest and he took me off of that drug and decided to give me Tegretol instead.   I started taking Tegretol and it really seemed to help I wasn’t having the face pain as much and my face wasn’t tingling as much.  About 3 weeks into taking Tegretol, I came out of the shower one morning and my wife exclaimed “Why is your chest so red?”  I said I didn’t know why but it had been getting red over the last few days.  By this point my whole torso  had a sunburned look to it.  My wife being a nurse correctly diagnosed that I was allergic to the Tegretol and to call my doctor.  I called the doctor and he said to  stop taking the Tegretol ASAP.  My wife went to work that night as I sat at the computer.  I was curious so……..I did some searches for “Tegretol” and “allergic reaction”.   I found a whole bunch of interesting reading on the subject.

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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.  The second brain surgery in September of 1996 and testicular cancer in October of 1996.  Now at this point in my life I do experience a bit of a reprieve from my troubles.  In 1997 I meet the beautiful woman that I would fall in love with, Brenda.  In 1998 we get married.  In 1999 we have our first baby girl.   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.

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 it, I non-chalantly told them that the doctors took most of the tumor out but had to leave a small bit of it in there because it was in an area too dangerous to operate on.   I remember my wife being 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 tumor in my head.  I hadn’t intentionally done that.  I was just as surprised as her that I had never told her that bit of the story.  She seemed like she was a bit nervous about this fact but I reassured her that it had been 4 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!  (This is the statement that probably jinxed me!)

My Surgeon back in 1995 had said that the follow up for the tumor would be to come back every year for 5 years for an MRI just to check that the tumor remnant wasn’t growing.   I had gone for 4 years and the remnant of the tumor hadn’t grown at all.  I had also gone back to check about the testicular cancer.  At first every 3 months, then every 6 months, then once a year.  It never came back or spread.  In my mind I was in the clear.   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 life was too busy to be bothered with another MRI.

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 tried to give her 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 surgeon’s that had operated on me, Dr. Chiocca.  She asked me to 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 5 years since I had seen him.  He immediately remembered.  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 up.  I said I had been back for 4 years but was overdue for my 5th year 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 booked it.

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Ok,  I have my emotions contained again and can go on with the story.  After the doctor told me I couldn’t play the saxophone again, I think I  was in a bit of a shock.  After a while, I started to feel pretty depressed.  I remember my friends and family members coming in and trying to cheer me up.  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 suggested neurosurgery but  nothing they said  would cheer me up.

The next day another Doctor 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 Doctor had said about never playing the saxophone again and he told me that he would fix it so that I could still play my sax.  He had worked with many professional musicians over the years and he understod how I felt.  He said he would do whatever it took so that I could continue to play.  I was very relieved after talking to him.

A few days later I went in for the surgery to seal up that eustachion 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 I had that darn bandage on my head and half my head was shaved again.  The ENT Doctor came in who had performed the surgery and he 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 up there, but I’ve gone back to him a few times since then because of headaches 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.
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Ok, on with the story.  If you’ve read parts 1-7 you know I’ve been through quite the ordeal.  It’s over now.  I can move on.  Start living my life and not worry about what’s wrong with me.  This was in the fall of 1995 and I’m doing pretty good.  Working a full time job and gigging again.   Although,……..about once a week I started getting these unbearable headaches.  I never had headaches like these before.  I just felt awful.  My head would have this dull ache and sometimes sharp pains.   I couldn’t stand noise or bright lights or anything.  At times I would feel really nauseous, sometimes even throwing up.   The only thing that would get rid of it was sleep.  If I slept for any amount of time when I woke up it would be gone.  I got in the habit when I had these headaches of taking Tylenol PM then falling asleep for 4-6 hours and when I woke up the headache would be gone.  This was about every 7-10 days I think.  I didn’t go to see anyone about these headaches because I thought they were just a side effect of having your brain operated on.  Once in a while I thought maybe they left a scalpel in there or something but I always dismissed those thoughts as stupid.

In August of 1996 (almost a year later) I got one of my headaches.  I knew it was coming and called in sick to work that day.  It was a bad one.  I immediately took some Tylenol PM and fell asleep.  I woke up a few hours later and ran to the bathroom to throw up.  My head was killing me!  This was a really bad headache.  I laid in my bed and a couple minutes later had to run to the bathroom again to throw up.  This order of events continued for the next hour and soon it was all just dry heaves and my head felt like it was going to explode.  I mean it was the worst headache you could imagine TIMES 2!

Finally, I got my roomate and told him I had to go to Mass General Emergency room and that something was seriously wrong with me.  He drove me there as I moaned and threw up the whole way into a large black garbage bag.  I remember sitting in that all to familiar emergency room hugging my big black garbage bag as I waited to throw up again. My head hurt so bad that I think if had had a gun I would have ended it right there.  I was moaning and rocking back and forth.

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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 nerves, arteries and not to mention my brain.  I also didn’t know if it was malignant (cancer) or benign.  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 drugs……….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 operating for that long but there were a few surgeons that all had different duties in the surgery so I would imagine they would 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 old. Next, 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 50’s.  All of a sudden it hit me…………I had been transported back in time to the 50’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.  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 an urgent  question “What year is it?”  She looked at me funny……… “What year is it?” I repeated.   She answered “1995, why?”   I said “Are you sure?”  She said  ”Yes” and my parents exchanges 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.  Over the next few hours I slowly returned back to reality.

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

I remember meeting with a Doctor to have the talk you have before a major surgery.  I remember his name was Dr. Harsh.  He basically laid out the plan for me, the options and the things that could go wrong.  I remember thinking while he was talking ” Man, this guy 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 5 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 may know, I am a professional musician and teacher so I was very concerned about losing my hearing in one ear.  I asked if there was another way to do it so I wouldn’t lose my hearing in that ear.  He said there was, but it was much more complicated and dangerous.  It involved going through the back of my nose via my face.  I remember while he was talking about the dangers of that procedure that I interrupted him and said “I’ll lose the ear”.  I figured I still had one good one and I would function and it would be better than being dead.
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Here we are at Part 5 in the story………….A couple of days after the whole “Lenscrafters” experience I decided to go get some Chinese food with a good musician friend of mine down in Boston.  During dinner I told him about all the things I have just told you in Parts 1-4 of this story.  I remember going through every detail.  He was asking a lot of questions and was bewildered at why  I hadn’t gone to the doctors yet.  He told me that his Dad was a prominent Psychologist in Boston and that he would talk to him and get some advice from him.

The next morning I went to work at my job at the convenient store.  I kept hearing my friends advice in my head so I called my doctor to make an appointment for a physical.  I think it was 4-6 months from that time.  I don’t remember going into all the details about what I was going through but just booked a physical.  As I  was counting money in my back office a little later, the phone rang.  It was my friend that I had had dinner with the night before.  He said that his Dad said I should see a doctor ASAP.  I told my friend not to worry and that I had made an appointment for 4-6 months later  which was as soon as they could see me.  I remember him saying that he thought that was too much time and that he would call me back.  He called a few minutes later and with a very serious and urgent tone said that he had talked to his Dad again and that his Dad said that my situation sounded very serious and there was something very wrong.  He told me to leave work immediately and go to the Mass General Hospital emergency room.  I thought my friend and his Dad were overreacting and told him I would go after I was done with work.  I hung up the phone and started to count the rest of the money on the desk but I was having trouble concentrating.  I kept thinking  about what he had just told me and was getting more and more anxious.  Finally, I put all the money away in the safe and called my friend to ask if he would go with me to the hospital.  He said he would meet me down there.
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