Well needless to say sleep is hard to come by for the fact that I am literally afraid to close my eyes. Just sitting outside today I started freaking out cause I feel something is out to get me. I'm sure it doesn't help that I over analyze things and get to worked up over them but this is how I feel. This is who I am....and since I had to have one of my surges twice that doesn't help. Why? I am sure you are asking.... It was because a piece of metal was left in my head making me have to start off at square A not only once but twice.
So now ya see? As recovery anxiety a lot of headaches, light , and sound sensitivity normal things from brain surgery except for like PTSD left behind or something. Which hopefully will go away. I got to see my baby yesterday for Easter and that's all I cared about. My eye freaked her out a bit. But I got to spend about an hour and a half with her today and it seemed like a lot but baby steps back into something like that ya know. Just getting used to one eye use has been something else. Lillie was great though... She kept asking me you get a new eye? You get your eye fixed? Which was so cute because she really is concerned even at 3.
As far as the tumor goes it is benign. Great for me but my first oncologist says to do chemo and radiation and everything I have read just to do radiation that chemo makes it come back quicker and more aggressive. So I'm thinking about having the slides sent down here to 21st Oncology and then to Jacksonville to have the proton therapy peeps up there see what they say also. Just a lot if stress.
Shawn has been great through out this whole thing. He has been my rock when I needed something to hold me up strong. Especially after surgery the first time was horrible. Puked all the time thought my brain was going to explode. Through the crying the puking multiple surgeries and
hallucinogenics they had me on. ( which made me think that I was on an assembly line in a factory being processed for packaging) So multiple times and having vital monitors fall on my knees and metal fragments in my head and some horrible nurse when I wanted to get cleaned up a little it. Came in dropped wipes in my lap and said ill be back in 15 minutes to help you with your hair. All while I have 2 iv's in and only one eye to see out of.
Yea so I'm am very glad to be home just wished I'm not afraid to close my eyes!
Monday, April 1, 2013
Saturday, March 16, 2013
Update on Last appt/ Upcoming appt
At my last appt was Shawn's mom Debbie, Shawn, and of course the main event.... Me! So we had to drive to Tampa because no Neurosurgeon right here in Fort Myers would take my case because they don't know if I have had this tumor since I was a kid or if it is cancer. So I met with this very skinny Italian guy named Dr. Siviero Agazzi who honestly reminds if the Italian car off of the Cars movie lol.
Anyways he comes in and is giving me an hour worth of information that quite honestly was hard for me to take in and since its illegal to record a convo with the doc I was forced to go into space and hope someone caught all the info that I missed. But pretty much what I got out of this was.... That I may have had this my whole life and no eye doctor can detect it because it is so far back on the optical nerve that you just can't see even with dilation. Next I have two other tumors (very small of course) that run along the optical track towards the back of the brain. We pretty much have it narrowed down to either I have Neurofibromatosis type I or 2 or I have cancer.
Course of treatment on this? Well.... If it is Neurofibromatosis I will do radiation 5-10 mins a day 5 days a week for 5-6 weeks. Then reevaluate after treatment. If its cancer I have to undergo chemo and radiation. Which means I may not be going back to work anytime soon.
So for my next appt on March 20th is going to be as follows:
Tuesday, March 19, 2013
4PM You will have an MRI at Tampa General Hospital Radiology
Wednesday, March 20, 2013
7AM You will have a CT scan at Tampa General Radiology
9AM You will have a meeting with Dr. Siviero Agazzi at the USF health building to review MRI, CT and surgery
10AM You have an appointment with our Nurse Practitioner, Melissa Byrd for the 1st part of your pre-op
Directly after your appointment with our Nurse Practitioner, You will have the 2nd portion of your pre-op at Tampa General Hospital, check in
345PM You have an appointment with Dr. Ilia Leyngold to consult before surgery
So yes once again I have to undergo surgery only thing is that this one in a little more intense. Fortunately they are just going in for a biopsy but there in only one of two ways you can go. Either cut along my eye lidish area and go in over the top of the eye or they have to shave half of my head cut along front to back on the side of my head come back around towards the top of my head then peel my skin down and go in that way. CRAZY!!!! Hoping to not have to go that way. Praying for eyelid surgery. Plus a plastic surgeon will be sewing me up which is great!
As for my mood it is about as good as its going to get. I'm having trouble sleeping at night, very sarcastic, and keeping a brave face for whatever God has decided to do with me. My surgery is scheduled for March 25th so hopefully shortly after that we will have some answers as to what it is.
Lyndsay
Anyways he comes in and is giving me an hour worth of information that quite honestly was hard for me to take in and since its illegal to record a convo with the doc I was forced to go into space and hope someone caught all the info that I missed. But pretty much what I got out of this was.... That I may have had this my whole life and no eye doctor can detect it because it is so far back on the optical nerve that you just can't see even with dilation. Next I have two other tumors (very small of course) that run along the optical track towards the back of the brain. We pretty much have it narrowed down to either I have Neurofibromatosis type I or 2 or I have cancer.
Course of treatment on this? Well.... If it is Neurofibromatosis I will do radiation 5-10 mins a day 5 days a week for 5-6 weeks. Then reevaluate after treatment. If its cancer I have to undergo chemo and radiation. Which means I may not be going back to work anytime soon.
So for my next appt on March 20th is going to be as follows:
Tuesday, March 19, 2013
4PM You will have an MRI at Tampa General Hospital Radiology
Wednesday, March 20, 2013
7AM You will have a CT scan at Tampa General Radiology
9AM You will have a meeting with Dr. Siviero Agazzi at the USF health building to review MRI, CT and surgery
10AM You have an appointment with our Nurse Practitioner, Melissa Byrd for the 1st part of your pre-op
Directly after your appointment with our Nurse Practitioner, You will have the 2nd portion of your pre-op at Tampa General Hospital, check in
345PM You have an appointment with Dr. Ilia Leyngold to consult before surgery
So yes once again I have to undergo surgery only thing is that this one in a little more intense. Fortunately they are just going in for a biopsy but there in only one of two ways you can go. Either cut along my eye lidish area and go in over the top of the eye or they have to shave half of my head cut along front to back on the side of my head come back around towards the top of my head then peel my skin down and go in that way. CRAZY!!!! Hoping to not have to go that way. Praying for eyelid surgery. Plus a plastic surgeon will be sewing me up which is great!
As for my mood it is about as good as its going to get. I'm having trouble sleeping at night, very sarcastic, and keeping a brave face for whatever God has decided to do with me. My surgery is scheduled for March 25th so hopefully shortly after that we will have some answers as to what it is.
Lyndsay
Friday, March 8, 2013
Recent events
On March 4th I went into Health Park Hospital to have surgery on my uterus because I had a fibroid the size of a softball. it was 4.5" wide and weighed over 1lb which is a large size fibroid. So I am currently healing from that. Let me tell you it is very rough. I feel for all the mommies that have had C-sections. How do you do it?
Next on March 6th I found out I have a tumor on my optic nerve that is starting to spread into my brain. I always thought that if I got that kind of news that I would just accept it without it phasing me..... Boy oh boy was I wrong. I cried for most of that night and part of the next day. News like that makes your whole life flash in front of you. It makes you wonder whether or not it will spread so bad that you become disabled and can't recognize your own kid. Or whether or not you will make it to see her graduate, get married, or even have kids of her own. I can't help feeling sad about these things because as a mother these are the first things we think of when we get bad new. (Or at least this mother right here does!)
So since the news I have tried to stay focused with things I can still do while I still have vision. Like sewing, quilting, cross stitching, and reading. Most of all though trying to not let myself get aggravated so much with my daughter and instead enjoy the time with her. She is now 3 and has become quite the little bossy thing. But it is so funny to see her develop these two totally different personalities. On one side she's all tomboy and wants to go outside and ride on the tractor with daddy and work on the truck with him. Then on the other side she wants her nails painted and she wants me to paint her eyes (her words not mine) or her nails and play dress up and have pictures taken. And it's thing like this that makes me happy to have my little girl.
Over the course of me going through my ordeals and finishing up projects and just needing somewhere to rant this is going to be my new spot to let my thoughts fly freely. If you don't like what I have to say I insist on you not reading, but for those of you who are honestly concerned and really wondering how I am doing emotionally. Well this is going to be where your going to get most of it.
Lyndsay
Next on March 6th I found out I have a tumor on my optic nerve that is starting to spread into my brain. I always thought that if I got that kind of news that I would just accept it without it phasing me..... Boy oh boy was I wrong. I cried for most of that night and part of the next day. News like that makes your whole life flash in front of you. It makes you wonder whether or not it will spread so bad that you become disabled and can't recognize your own kid. Or whether or not you will make it to see her graduate, get married, or even have kids of her own. I can't help feeling sad about these things because as a mother these are the first things we think of when we get bad new. (Or at least this mother right here does!)
So since the news I have tried to stay focused with things I can still do while I still have vision. Like sewing, quilting, cross stitching, and reading. Most of all though trying to not let myself get aggravated so much with my daughter and instead enjoy the time with her. She is now 3 and has become quite the little bossy thing. But it is so funny to see her develop these two totally different personalities. On one side she's all tomboy and wants to go outside and ride on the tractor with daddy and work on the truck with him. Then on the other side she wants her nails painted and she wants me to paint her eyes (her words not mine) or her nails and play dress up and have pictures taken. And it's thing like this that makes me happy to have my little girl.
Over the course of me going through my ordeals and finishing up projects and just needing somewhere to rant this is going to be my new spot to let my thoughts fly freely. If you don't like what I have to say I insist on you not reading, but for those of you who are honestly concerned and really wondering how I am doing emotionally. Well this is going to be where your going to get most of it.
Lyndsay
Sunday, June 10, 2012
My First BIG Blanket!!!
I have made several block quilts since I have gotten the machine but this is my first Big Blanket. I picked out the "blocks" fabric from Joann's. And everyone who knows me knows I LOVE turtles. So I got excited when I found them with bright colors and decided I had to make a quilt with this fabric. So I went over to the "Keepsake Calico's" and found the pink, lime green, turquoise, and purple.
So I started to sew the blocks then sewed the blocks together and I figured the blanket needed something more. That's when I started bouncing ideas off my boyfriend and he came up with we should do like a 6" boarder around the outside. We originally settled on doing the turquoise color all the way around. I went back to buy some more and they were ALLLLLL gone. I checked both North Fort Myers and Fort Myers stores for it.
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