This all came about as a total surprise. I had been having tremors in my hands, fluttering sensation in my eyes, blurred vision and migraines for the last six months to twelve months. No medication in the world would touch the migraine - except NyQuil. One symptom that I was having that I had no idea was related to anything was the strong smell of cigarette smoke - around me, on me, in my hair....everywhere. I felt that I reeked of cigarette smoke and I am not around anyone that smokes - ever. (after researching women with history of a brain tumor - this is one thing several of them mentioned......if I had only known!) I thought all of my symptoms were just stress related as I have a very demanding job - even though I work from home (it is not all it is cracked up to be!).
My primary doctor wanted to send me to a neurologist.....I said lets wait another three months and if it is still happening - I will go. He thought my symptoms were related to a vitamin D deficiency, which I am taking 100,000 units a week....yes 100,000! I was to have another vitamin D check in January 2012 so that is what I was waiting for.....
Well.....my body decided it could not go another three months.... the tumor needed to make itself known and boy did it ever!!
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| HarleyDavid - my shadow! |
About 6:00pm - I went out with my brother to a very nice dinner at Outback Steakhouse. Everything was wonderful - food, service, just a great time....just me and my brother. I had a little bit of a headache, but that was normal. My brother came back to my house after dinner and we just sat and talked, which we rarely have time to do together - just the two of us. My brother left about 8:30pm to go home to watch the World Series between the Tigers and Rangers.....which I find out later that I missed a good game. The final score was Tigers 5 - Rangers 15....more on this later.
My headache started to progress so I knew I might be in for it. I took some NyQuil (unable to swallow pills...but I can now!) and laid down - ready to call it a night. My family was not home.....My oldest son was in Orlando with friends at a paintball tournament and my husband & youngest son were at the "VanWilson" benefit concert in St. Pete rocking out to the family band of Paul, Mark and Patrick Wilson.
I received a text from my brother about 9:30pm telling me that someone had just knocked on his door and took off running. I responded and that is the last thing I remember......until I woke up.... outside on my front breezeway/patio..... "why was I outside?" I asked myself. I started to panic as I was totally confused. I could not see anything....not sure how I found my way back inside. Next I remember I was calling my husband.....I do not even remember dialing him, but I must have known that I needed help. I asked him where he was and said that I did not know where anyone was - including myself. He heard the frantic tone in my voice. I was not making any sense at all. He had Jake call me to keep me on the phone while he called my dad to ask him to come over to see if I was okay. My son who was on the phone with me said that I quit responding to him and in the meantime - I am roaming around on the floor and the house with not even a clue where I am. I don't even know how I managed to get dressed.
Since I quit responding on the phone - my husband called 911 immediately while driving 80mph home from downtown St. Pete. Thank God that my dad lives only two miles away so he was here in no time....followed by my step-mom (she was just about to get into the tub to enjoy a relaxing bath...sorry Annabanana :o) ). Bill and Ann knew that something serious was happening with me. It was not an overdose of NyQuil or a medication contraindication. I have taken NyQuil (just a sip - not a full dose) for years since I am unable to swallow pills.....
It is all a big blur.....the paramedics, throwing up, the drive to the hospital, getting set up in the ER.....vaguely remember any of that. Once the doctor came in to assess my condition - she noticed that I had bite marks on the sides of my tongue. This definitely confirmed that I had suffered a seizure. I have no memory of it whatsoever. My tongue was swollen by this time. I also had bite marks on my lip.
I remember Ann and Trish (my step-sister) coming to the ER to see me. (*** I don't believe in step-so&so...family is family and they all mean the world to me!!***). I was then sent for a CT scan and a chest x-ray. The CT scan did in fact reveal a brain tumor the circumference of a golf ball. The tumor was located on the top of my head on the medial aspect shifted to the left. This explains why all of my symptoms were mostly felt on my right side. Ann was in the room when the doctor came in to tell us the bad news.....brain tumor. She said that I took it like a trooper....she was waiting for me to react and I didn't. I guess I was still in some state of shock from the seizure.
I had to be transferred to a different campus since there was not a neurology floor where I was.
GET READY TO LAUGH.......I do remember asking the paramedic that was going to be with me in the back of the ambulance if I could keep my phone. He said yes. While on the way - I asked him if he knew what the score was to the game. He said "what game"? I said "the baseball game" (like seriously dude - what else is there?!?!? I am sure he saw my eyes roll!!). He said "no" so I proceeded to look it up on my phone (Sportacular app). By this time - he had to have sensed that I was a major fan of baseball - I guess that is all I was talking about. He then asked me if I was a Rays fan. I was like "dude - of course!! Are you?" He then said "you don't want to know what I am then"......I had a feeling. I said - "you are one of those damn yankees!!!" He said "no" (laughing). I was like "OMG - even worse - you are a Red Sox fan?!?!" He admitted to it and said that he was not even from Boston. He did not even know why he was a Boston fan....it is just what his family was. (NO OFFENSE ANYONE!!)
I tried to convert him to the RaysNation right there in the back of the ambulance.....not sure I got him though. He was a true Boston fan. Here I am - talking about our Rays and baseball when I should be worried about what is going to happen to me when I get to the hospital......
(I thought this was funny so I had to mention. I do not remember anything else about the ride to the hospital other than this conversation. I can't recall getting to the hospital - getting to my room or anything. Can't even remember telling the kind paramedics good bye....hope I wasn't rude. I was not even under the influence of hospital medications at this point....)
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| <3 I LOVE the TB Rays!! <3 |
I got settled into a nice private room. Had the best of the best nurses and tried to get as comfortable as I could. Here I am....41 years old.....I have never been hospitalized except for two c-sections (piece of cake!) when I was blessed with my boys.
Sunday 10/16/11 = Phone calls had been made, family and friends started to arrive. Texts, e-mails, flowers, cards, gum, candy, chocolate peanuts, swiss rolls.... I was flooded with all of my favorites. I was informed that the neurosurgeon who I was assigned to was the best there is. I had a MRI to reveal the monstrous tumor and its ugliness. Don't really remember a lot.....
Monday 10/17/11 = spent the day surrounded by friends and family.....still not knowing what to expect. Neurosurgeon made a visit to confirm the brain tumor. He stated that it was definitely a meningioma. 90% of meningiomas are benign so this kind of made us feel better.....although, the 10% chance of malignancy did scare me!!! He was also able to confirm that the tumor was wrapped around a vein, which is probably what caused me to have the seizure. With the tumor involving the vein - this complicated the removal, but he was confident that he would be able to remove as much of the tumor as possible.
At this point - I knew I had hundreds if not thousands of people praying for me..... people I did not even know. The neurosurgeon said that he would get the surgery scheduled for later on in the week. I was like "what?!? I am here - lets get this thing out!!" The excellent doctor that he is said - "OK - I will cancel all of my clinic visits for Tuesday and we will do it then!" This man cancelled all of his patients for an entire day. I work in the medical field..... I know what this entails!! It is NOT an easy task!! I was amazed. So - we sit and wait for what Tuesday is to bring forth.
A nurse gave me a spa mineral bath that evening....(I must say that a hospital's version of a spa mineral bath and my version of a spa mineral bath are two different things! she quickly scrubbed me with this little brush....not sure where the "minerals" came from....maybe they said that just to help me feel better.)
After two Ativan (that I had taken for two different MRIs since I have major claustrophobia) and a Restoril that was given to me to help me sleep that night - I slept like a itty bitty baby.....I slept for six hours straight. I do not ever remember being able to do that. A blood sucker from the lab came in in the middle of the night to draw my blood and I did not even wake up. They tried to wake me numerous times.....she drew my blood and left - me not a clue she had even been there poking on my arms and hands. I am not one to take medication so anything I do take - it does not take much!! ....honestly - I can't even swallow a pill, but I had to learn real quick!!
Tuesday 10/18/11 = THE DAY OF SURGERY. I had so many visitors.....friends and family that I had not seen in a very long time. The very first visitor of the day was Bill. I woke up right at 7:00am - opened my eyes and he had been sitting there watching me sleep. Poor thing did not want to wake me up. My cousin Robbie and his wife from Daytona stopped by to see me on their way home from St. Pete. I had not seen him in such a long time. So many people very dear to me were there....waiting, waiting, and waiting. Again - I can remember hearing everyone, but I do not have a visual memory of anyone. I do remember the prayers of my cousin and a dear friend Jack as everyone gathered around my bed.....I was touched and felt an overwhelming peace.
The reality of all that had transpired and what was getting ready to happen truly had not hit me yet......no clue what to expect. I was about to have a craniotomy! The crown area of the top of my head was getting ready to be shaved, scalp cut and peeled back, skull drilled and cut away - brain exposed so the tumor could be dissected while meticulously avoiding the vein the tumor was wrapped around.....seriously.... a brain tumor?!? me?!?!? wow....
I do remember having a moment of weakness and telling my family if something was to go wrong with the surgery - that I did NOT want a tube down my throat while I was awake.....I did not want to be on life support if that was necessary. Just let me go..... :o( (sad to think I said this). Some of my greatest fears..... life support, being trapped in a fire and drowning.
I was taken down to the OR on time. I do not even remember getting out of bed to transfer to the OR gurney......
My surgery was supposed to start at 12:30pm.......little did anyone know what was actually happening in the OR. I was already put under general anesthesia and the neurosurgeon was ready to start the incision when one of the nurses noticed a FLY flying around the operating room. A F-L-Y, yes a fly. They tried to catch the fly and to no avail - that little sucker was not to be caught so they decided to move me to a different room. All of the instruments had to be changed as well. The neurosurgeon came out about 2:30pm to let my family and friends know about the FLY incident (delay) and that they were almost ready to get started again.
Okay - so Mr./Mrs. Fly - I don't know what your purpose was, but you made me laugh afterwards ..... who has ever heard of a fly in the OR?!?!? Mom - did you send that fly?!?!? (sounds like something she would do!)
Around 9:30pm, the neurosurgeon came out to the waiting room to let everyone know that the surgery was a success and that he was able to remove more of the tumor than he had originally thought. He did have to leave some of the tumor as it was too risky with the vein being involved. He used a new piece of equipment that was MRI guided. Technology today is absolutely amazing.
After spending some time in recovery - I was then moved to ICU and all of my family and friends still hanging out were able to come in and see me. I think this was close to 12:30am. They were not leaving until they knew that I was ok. WHAT A LONG DAY!! The surgery was only supposed to take four hours...... almost nine hours later - I was tumor free (except for what he had to leave)...with 40 staples in the shape of a backwards C on the top of my head.
Mark did such a good job of keeping everyone informed of my condition through e-mails, texts, phone calls and Facebook. He was one busy man during this time. I am sure that everyone reached out to him as well as this had to take a toll on him. I was in LaLa Land the next few days.....morphine and percocet....
to be continued.....Wednesday 10/19/11 stay tuned....gross pictures to follow...
if you have read this far - God bless you. I have always wanted to have a blog and it is now my intent to bring awareness to meningiomas. I am a survivor and will beat this thing again if it decides to show its ugly face again......
What a great story. Keep up the blog. Want pictures.
ReplyDeleteJen Betz