My first Hurricane................on the boat

D dock predaybreak

       I was in my recuperation stage, which only means that I was still living way up in North Naples out in the country back in on two dirt roads.... Where the house I lived in was off a dirt road that was off the dirt road called Rock Road...Most people around here know of the Rock Road.  For some reason it seems like everyone has been there somewhere, or has taken it to somewhere.  All I did was find a beautiful house to live in out there....All new with tile floors, two bedrooms and nothing else around except the main house, and the animals that one could hear in the middle of the night that sounded like you were living in the jungle.  There were wild animals neighbor people had brought in from all over the world, not to mention the wild bore, and the chickens in the barn where I was along with the horses there.  The house had been built for their daughter who did not move into it, so special care was taken in the building of it.

    I loved being out there and I had started a garden with some organic tomato plants before I had finished radiation.  I never got to eat any fruit from those plants because as I finished with my treatments and made it to the Neurologist stage I was too exhausted and heavily medicated to do anything but sleep in my chair, watch the animals eat my tomatoes, and get out of my recliner once a day to get some food for myself somehow, unless someone would bring some to me by chance.

   As I progressed into trying to get out of the chair and exercise one whole minute at a time, this would eventually roll in to two minutes and on up until I could last 20 minutes or more.  I had to start playing again but I could not remember my music so I would practice my songs over and over.  I would play them as far as I could remember them until I could get them played all the way through.  Once I remembered them I wrote them down in a book.  Sometimes I would write only the words because the music was complicated and I had remembered it and gotten it into my head again.  Then for some of the songs I wrote down all the chords and the words so I would not have to try to remember them again.

     Finally I got it together to go back to Goodland and play one day a week.  Before I was ill I had played at Chuckles Pub and Grub ( which was actually called Chuckles Chickee Bar) every Sunday afternoon, and other musicians would come and sit in with me.  It became a very nice jam session.  I was now capable of conducting a jam session again.  I could not carry my equipment but my ex would come and carry my stuff for me for a couple months until I could carry it myself.

     Most of the time my other friends would help me with my equipment at the gig when it was over and I had made some new friends who would also help.

Home in a Fog

        My new sailor friend would say to me, "Do you want to get some food now?" and we would all end up over at the Marco Lodge having drinks and food.

     Sometimes after he took me out to eat, when it was raining my new sailor friend would say to me, "You should not try and drive up across that awful road.... that Immokalee Road to Rock Rd is a death trap.  You can come and stay on the boat."  And I would take him up on his offer and he would get up and go to work in the morning and let me sleep in.  I was still weaning myself off of some of the very heavy medications which made me so very tired and unable to drink any alcohol at all of course (after surviving all this I did not want my lungs to stop moving or my heart to stop beating due to stupidity).

     It took me six months to get myself off of all that medication they had me taking, but I made it and I was fine....mostly....or at least I had come so far that it seemed like, at this point, I was fine, compared to where I had come from..

      When there is a Tropical Depression that has been named because it has gotten up the strength of 75 MPH, the younger people that live in houses on Marco Island (especially those who work in restaurants and bars), think it is a great time to have a hurricane party.  You see they have to work anyway.  Some people that work in day jobs get to go home and prepare for hurricanes but the crews at bars and restaurants have to be there when the hurricane parties start..

More of the stationary dock

         I always thought of hurricanes parties as unnecessary and I would never go because I did not drink.  But this time a hurricane was coming and I had been on a sailboat and was learning how to sail.  And when I was invited to go to a hurricane party at a fellow musicians house with his family and their friends, I went.  Some of the family was at a bar partying and I was at the house with the rest of them.  Then I got a call from my new friend, the sailor.

     He asked me how I was and where was I going to weather the storm.  I was feeding the cat for a friend of mine who was away and she said if there was a storm that I was welcome to go stay in her house.  Well I told my sailor this and then I said but I would rather come and stay on the boat with you.  Now this was certainly shocking news to him because it was very different thinking to believe that anyone would feel safer on a boat than in a house.

     This is the way it looked to me.  I could go to the house all alone for my first hurricane on the island, or I could go to a sailboat with a seasoned sailor who knew what to do....hmmmmm.... Was this really that hard of a decision?...I think not.  I knew that I felt safer with him than by myself....If I had never met him I would have gone to the house of my friend and weathered this new trauma all alone, but I was blessed and did not have to.

         So here we are on the boat and it is raining and pouring and blowing.  As it got later, we talked and discussed the storm, what to do, and played cards.  When it got late enough we laid down in the bed and I went to sleep.  However, he sat up all night, watched the weather and waited so that we would be safe...All he asked, is that if the need be, when he said we have to go that I was packed and ready to go.  To comply, I packed my stuff before I laid down on the bed.

Only part of the dock

         Finally the time came and he said to me, "Kaite, we have to go now."  Apparently this is all I needed to hear.  He said he had never before, or since, seen me move so fast.  I was up in 2 seconds with my bag in hand and was right behind him, on our way up the companionway through the hatch.

     As we were dismounting the boat, he said to me just come down here to the dock, I've got you.  He made this statement because, by now the wind was blowing at 55 mph, the boat was leaning so far to the port side that the floating dock was farther than I could reach with my legs.  We normally dismounted the boat like you would dismount a horse, over the life line to the dock.

         The floating docks (finger piers) we were tied to, led up to the main dock via a ramp securely mounted to each other, but the main dock was NOT A FLOATING DOCK....It was a stationary dock and by this time the tide was so high that the main dock and our feet were under water.  Thank God there was a railing so we could see where to put our feet, and in the middle of the night it was quite dark.

     This was around 4 AM so we drove out of Goodland to Marco Island, and ate breakfast.  By the time we returned to Goodland the water was over the road into Goodland.  We had to drive very slowly through it, as it was deep.  We were in a Ford Explorer so we could attempt this, but behind us was a van which of course did not make it through the deep water and drowned out.

The ramp

        We were the last people to make it back into Goodland before Goodland lost power.  Thank goodness we had eaten by this time. It was time to start our own little hurricane party.  We went right over to Jackie's Pink House Motel and sat outside with her and the other Goodlanders under cover that joined us in buying up the beer there and drinking it before it got too warm, since we were without electric...This seemed like the only thing to do at this point.

    Most of us were going around to help other people do things like find their belongings when the water started to go down, or put TV's and such electrical items on the beds and tables so they did not get wet with the water coming into the houses.  Also joining them in helping the people whose houses were on the water sweep the water out of their houses back into the ocean.

     We had at least been smart enough to eat while we could.  Others were scavenging to find food without electricity for the day.  I believe the electric came back on before dark, but when the water went down enough we went back to the boat and cooked because we had an alcohol stove and twelve volt electricity.  All we had to do when the batteries ran down was start the boat and charge them up again.

     I do so love living on the boat.  It has been 6 years already and I have been through almost too many hurricanes to count now, at least 8 that I remember very clearly and I know there were a few blurs.  We and the boat have survived them all.  That says a lot for us.  I think.

GETTING BACK TO LIFE...IN GENERAL....BACK TO MY MUSIC

     I had just returned to Marco island from my 10 year stint in Michigan being a scientist in Molecular Epidemiology.  I remember having this very nice gig 3 nights a week in Naples Florida... and I was also working at a day gig for a plastics company doing statistics on the computer with their efficiency formulas for their manufacturing computer systems...I could not have been happier.

     Then....I had a toothache and went to a dentist that I found...I had asked around and some of the other people at work said they thought he was good...so off I went.

     When I was sitting in his chair he took an x-ray of the area I had a problem with and when he came back in the room, he started feeling my neck and the glands around my throat....Well...!!!...I wondered why he was doing something that people do to you (like your Mother) when you are sick....so I asked....

     That was the beginning of a whole new reality for me....something I had never encountered before in my life....I was ill........All I heard was the word growth....He then walked me over to another office in the same complex we were in...This doctor was an oral-maxillofacial surgeon....I certainly could have gone my whole life without finding out what his job entailed.

     I went in the very next day for surgery.  Apparently this tumor was as aggressive as an a very aggressive cancer.  the doctor proceeded to tell me I had one of three diseases.....I do not remember what they were but at least one of them was a type of cancer and none of them was a good idea.

     The surgeon decided that it was always a better idea to have a local than to be put to sleep for the surgery so I acquiesced.  We began and after about 15 minutes of surgery I made sounds referring to the fact that it was hurting me and he numbed me again.  Again, after around 15 minutes of surgery I made sounds that it was hurting and he numbed me once more.  This went on every 15 minutes or so until he had removed two of my back teeth on the upper left side and scraped out the bone under them.

     Then this surgeon tells me that I cannot cry, whistle, sneeze, or cough for a few days until this heals because he has exposed my sinus cavity, and sends me home.  So let me get this straight.  They tell me I most probably have cancer, but do not cry because it will be very very bad if you do.  How nice.....I am not even allowed to have emotions about what I am going through.....

     Okay....Okay...I got it.....

     Did I forget to mention that on the way out of the office after surgery I have to write a check for how ever many thousand this cost???

     Sooo....knowing that I am going to have another surgery next month because what the surgeon is trying to do is save as many of my teeth as possible, I say to him, "I think we should go for the anesthetic next time.  I cannot take that pain again."

     Now, when I go back for my check up a couple days after the first surgery he says to me. "Amazing....It is healing!"  Now this takes me for surprise because he did not tell me this, but then he says to me "I did not sew it up because cancer tissue does not heal and I was just sure it was cancer"   The he says "Good news...It is benign".  I am thinking "Well of course it is.  I just knew it was benign".

     Then when I go back in for my second surgery the doctor tells me that pathology said it is not cancer.... Great!!!...but they do not know what it is.....hmmmmm.  This time I am thinking "No sh**t Sherlock" but I kept my mouth shut about it.

     Now his wife is a surgical nurse....so here we are doing surgery in his office..and he puts the proper stuff on my finger to check my pulse and the other things attached to me and he is putting the needle into my arm for the anesthesia and he has the gas thing over my nose and I do not like the smell of this gas.....and I am starting to shake and my legs are starting to jump and he asks me if I have anxiety and I say "oh yes"...and he takes the gas off my nose and puts a surgical hat over my nose so that I can breath some of my own CO2 now and stop the anxiety when I hear him puting tape over the needle and I say to him "Oh did I tell you I am allergic to paper tape?"...well no I did not.... So now I hear him taking the gloves off of his hands because he cannot get the tape off with his gloves on and well about that time I fell asleep.....I am no fun to do surgery on because I am allergic to everything.....


     You gotta just laugh at this though....because this poor surgeon is trying to do his job and encounters all this stuff that he has never had to deal with before....not that they are not used to that.....I am certain that every case is very different....but when you come across someone who is allergic to so much medication and medical items.,,,,you just have to feel sorry for this man going through this in the middle of the start of the surgery....I am allergic to 8 different things that can cause real problems in surgeries....I always have this great big red folder unlike the other people getting stuff done.    I can just see them talking about this for years....Like over drinks at the Christmas party...you know?

     Well then, eventually I wake up from this surgery and they have removed two more teeth and scraped out more of the bone again.  I cannot sit up because every time I change position from lying down to sitting up I feel like I am going to throw up.  So I am there in the office chair for hours and finally they put me into a wheel chair and roll me out and the family takes me home and I sit up all night long on the couch and puke black stuff for 11 hours....I had a double bagged grocery bags and a trash can there with me on the couch....it was just so much fun...

     When I went back in for the check up after this surgery the doctor said to me, "We sent this to the Armed Forces Unit in Bethesda Maryland for diagnosis.  I am thinking , "Good now we will get some answers."

After the illness I was singing again

     Well we did try to keep my eye tooth.  Now we had to crown the front teeth (which at this time were perfectly fine) to hold the partial in place....so the eye tooth became loose also and we had to remove it as well.  I told the doctor that I am NEVER going to puke for 11 hours again and we will have to do this with a local.  He agreed and added that now he understood my system to be one with a high metabolism and then everytime he would numb me, my body would metabolise it within the 15 minutes and I was no longer numb and he would just have to keep numbing me every 15 minutes and we would be fine and no pain for me.  He did this and we got along fine during this surgery.

  We did three surgeries, one a month, found out it was benign, found out it was not cancer but they did not know what it was...they sent my tumor(s) to the Armed Forces Unit In Bethesda, Maryland for pathology and it came back as "Histiocytosis X"...oh yeah...you guessed it...the "X" means they do not know anything about it.....

     This is a long, drawn out, very scientific illness so I will spare you the details and just tell you that I recently spoke to a pathologist about this and he informed me, once again, of how unbelievably lucky I am to be alive...!!!!! And I am sooooooo grateful to be alive...!!! They treated me like they had treated the other patients before me....Did I forget to mention how very, very rare this is.....So rare that no one is doing any research on this...And it is mostly children who get this........ And it is mostly fatal....I did however see the only specialist in the world, who happens to be right here in Florida....in Tampa at the Moffitt Cancer Center....of which I am now a proud card carrying member....

     Then, they treated me with radiation ...in massive doses .... (I will tell you this story later).... during which time if I had not spoken to my sister about this and she sent me to find a Reiki Master to help me through the treatments, I never would have made it.

     When I finally found a Reiki Master, she was also an RN and she prayed with me on the phone about my illness and explained to me that "I had to think of this treatment like God cradling my head in His Hands and it was through this treatment that He was saving my life"

     The radiation went up through my brain causing the most extreme case of anxiety the doctors had ever seen....I could not sit down or lie down or stop moving for 3 days until I drove myself to the doctor and said "get rid of this...make this stop...now" .....I lost my math functions and some of my word functions in my lexicon....The final straw was my diagnosis of PTSD.....Great!!!  Just Great....So now they decided to put me on massive doses of neurotransmitters and meds inducing them until I did nothing but sleep in my lazyboy chair for 9 months....One day I simply said ...Whoa!!! And proceeded to wean myself off of the drugs and went back to work.

     Now I became a country song.....I lost my great job because of downsizing at the company...I had lost my gig when I could not play because they were taking out part of my mouth at the oral maxillofacial surgeons office....the man I had been with for over 12 years walked out on me to another woman....and my dog died while they were radiating me....OKAY WHERE WAS THE TRAIN??? 

     Well there was no train in this song and no prison....but when you go through something like this you also have to remember that you pay for this while you are getting this or they do not do the work...So now that I had spent every last dime of my money... I had to go back to work....and I managed to get $300.00 out of my insurance companies (both of them) because the reports said tooth....even though it was the bone they were taking out..the teeth just happened to be connected to the bone.

     So now I was starting my life over....I found a job that I was on my feet 10 hours a day...I would go home at night and cry myself to sleep cause my legs hurt so bad from being in bed for 9 months and now having to stand up all day...I got over that and I got a better paying job which was horribly stressful...I learned lots of stuff though.

     A new man walked into my life and I was learning how to sail.  Thank you God.

     I am just praying that I can learn the right stuff from this experience and not have to go through it again....I am doing my best....Believe me....

     I could not even carry my brief case for awhile but I got back to where I could play and eventually carry my own equipment.  I had to keep practicing my songs until I could remember them over and over until the memories would eventually come to me.  Every day was just a little better as I worked hard to get back into shape....I had to start by exercising one minute at a time but I finally got up to an hour and off I went....Thank you again God