There will be an upcoming post right after everything is made. Tune in!
Friday, July 5, 2013
Halloween Ideas for the house
It's that time of year for me right after the Fourth of July I tend to start thinking about what new I would like to add to my Halloween collection. Since it is my favorite time of the year it is very hard for me to to narrow it down just to a few things I like. This year I have decided to attempt to make placemats yet again only I know what I did wrong last time. A table runner for the coffee table In the living room. Lastly, 2 throw pillows.
Saturday, May 18, 2013
Post Op Infection/ News that I recieved
It has taken me several days to sit and think about how I plan to write this portion of my blog because after my last trip to Tampa General Hospital it is not great news once again. As of my last MRI that I had done my tumor has grown so much that it has now hit the optic chiasm and is now running down the other visual track toward the back of the brain. It has not infiltrated the right optic nerve yet thank goodness.
Bad news: I have developed a post op infection either from when they took out the spinal fluid drain out of the side of my eye and somehow something got in there. Or because when they did my surgery they cut out a portion of my skull to go in OVER the top of the optic nerve to be able to biopsy the tumor well either the hardware or the bone has infection in it. So, if the IV antibiotics that I am on for 6 weeks do not wipe out the infection. I will be having surgery done again for the third time on my eye and they may be taking the bone out of my head and leaving it out for 6 months to allow for the infection to clear and then in 6 months put it back in again and surgery again for the fourth time. But it all depends on if the infection is so bad. Sometimes you can leave that piece of bone in and still get rid of the infection. Depends on how bad it is inside.
So everyday I spend close to 6 hours hooked up to IV antibiotics to try and get healthy so that way I dont have to have these other surgeries. Honestly I hope it works because that was the worst surgery I had ever gone through and do not wish it upon anyone. Plus, I could use a break! My life currently feels like its falling apart and all I can do is stand there and watch it. Which leads me to my next bit of bad news... I found out that I have a real good chance of going blind not just worsening vision but all the way. Like never get to see your daughter graduate high school or get married kind of blind. Like not be able to wipe your own butt kind of blind. And if Shawn read this he would be having a cow with me right now.
They dont know when because of the fact that I am such an odd case. I am an adult with a childhood disease. So they are grasping at straws. They hope that whenever I can start radiation that it would stop the growing and prolong the vision loss, but for me it is hard to be optimistic anymore because I take one step forward and end up 6 steps behind and cant catch up.
Emotionally how am I handling this? Well, when I first found out I cried and cried and cried because the thought of not getting to see Lillie's kids or grow up or ever see Mickey and Minnie are hard for me to accept. I wanted to be a great mother to her but now I feel that I have failed her before her life has even began. And I know that she will grow up thinking I ruined her life that somehow she will resent me. I would like to see my husband get old and gray and unfortunately realistically that may not be an option for me. So, I am angry about everything. I HATE the fact that this is happening to me. I HATE the fact I cant change it, and I HATE the fact that no one really understands what I am going through.
Shawn is being optimistic and hoping things don't turn out horrible which is what a great spouse would do but after the last year I have had between my Uncle and my Grams and my fibriod tumor removed and now a tumor on the optic nerve. Its like whats next? Am I going to fall down in some sink hole or something? I'm just curious if things are ever going to get better???
Bad news: I have developed a post op infection either from when they took out the spinal fluid drain out of the side of my eye and somehow something got in there. Or because when they did my surgery they cut out a portion of my skull to go in OVER the top of the optic nerve to be able to biopsy the tumor well either the hardware or the bone has infection in it. So, if the IV antibiotics that I am on for 6 weeks do not wipe out the infection. I will be having surgery done again for the third time on my eye and they may be taking the bone out of my head and leaving it out for 6 months to allow for the infection to clear and then in 6 months put it back in again and surgery again for the fourth time. But it all depends on if the infection is so bad. Sometimes you can leave that piece of bone in and still get rid of the infection. Depends on how bad it is inside.
So everyday I spend close to 6 hours hooked up to IV antibiotics to try and get healthy so that way I dont have to have these other surgeries. Honestly I hope it works because that was the worst surgery I had ever gone through and do not wish it upon anyone. Plus, I could use a break! My life currently feels like its falling apart and all I can do is stand there and watch it. Which leads me to my next bit of bad news... I found out that I have a real good chance of going blind not just worsening vision but all the way. Like never get to see your daughter graduate high school or get married kind of blind. Like not be able to wipe your own butt kind of blind. And if Shawn read this he would be having a cow with me right now.
They dont know when because of the fact that I am such an odd case. I am an adult with a childhood disease. So they are grasping at straws. They hope that whenever I can start radiation that it would stop the growing and prolong the vision loss, but for me it is hard to be optimistic anymore because I take one step forward and end up 6 steps behind and cant catch up.
Emotionally how am I handling this? Well, when I first found out I cried and cried and cried because the thought of not getting to see Lillie's kids or grow up or ever see Mickey and Minnie are hard for me to accept. I wanted to be a great mother to her but now I feel that I have failed her before her life has even began. And I know that she will grow up thinking I ruined her life that somehow she will resent me. I would like to see my husband get old and gray and unfortunately realistically that may not be an option for me. So, I am angry about everything. I HATE the fact that this is happening to me. I HATE the fact I cant change it, and I HATE the fact that no one really understands what I am going through.
Shawn is being optimistic and hoping things don't turn out horrible which is what a great spouse would do but after the last year I have had between my Uncle and my Grams and my fibriod tumor removed and now a tumor on the optic nerve. Its like whats next? Am I going to fall down in some sink hole or something? I'm just curious if things are ever going to get better???
Tuesday, April 30, 2013
University of Florida Proton Therapy said....
They said that I have cancer unfortunately. I have seen my neurosurgeon, two radiologist oncologist and now Dr. Malayapa from the proton therapy institute and he told me I have a disease, and I looked at him like he had three heads. I said what do you mean I have a disease... He was like optic glioma is cancer it is a disease. Obviously when you state to me I have cancer then yea I understand I have a disease but when it came right down to it I had no idea. So I have Optic Glioma Cancer and have to undergo one round of radiation through Proton center.
Since my stomach was upset and I couldn't stop barfing I was not able to stay and have my mask made. So I have to have a thin slice MRI done when I go back up and a CT done also then they are going to fuse the two images together to find out exactly how my bone structure is so that way they know exactly where they are going to be radiating. Plus, I have to have my mask made also. I did however hear from Dr. Malayapa that this type of radiation is no better but because of the location and how my tumor is. He said that its best to not radiate part of the brain if I do not have to which I understand. So this will hit only my tumor and that's it. I will have to say that when they said it was cancer I cried like you would not believe. I just couldn't believe that I had seen so many doctors and not one of them tell me that I have cancer. I felt like an idiot!
On the bright side I did get to visit St. Augustine like I have always wanted. Also, I got to step foot in the Atlantic Ocean so I got to cross off some things on my bucket list. When we first drove up to Jacksonville it took forever to get there I think it was like 9 or 10 hours because all we took was nothing but back roads. It was also nice to have a weekend get a way with my honey bear because we had never done anything like that before. Places we visited were Ripleys Believe it or Not the original Museum
Thats a Fancy Coffin... Crazy right... your dead?
I also visited Ponce DE Leons' Fountain of Youth... Totally drank from it. Not that I want to be youthful just to help me with what is wrong with me. But I did however bring back a sword for Lillie... Which she loves and just to be clear its made out of wood. Also, I brought back a bottle of water for Mom and Rick incase they want to be youthful together. LOL!
Our new House what do you think
I also visited Ponce DE Leons' Fountain of Youth... Totally drank from it. Not that I want to be youthful just to help me with what is wrong with me. But I did however bring back a sword for Lillie... Which she loves and just to be clear its made out of wood. Also, I brought back a bottle of water for Mom and Rick incase they want to be youthful together. LOL!
Our new House what do you think
Thursday, April 11, 2013
GIVEAWAY!!!!!!
Okay I have decided to give away my first business card holder. In order to win you must share this blog/ post and then comment below. Contest will end on Saturday morning at 10:00 am. Make sure there is a way I can message you on Facebook for those of you who take that option away or I will move on to the next winner.
Wednesday, April 10, 2013
Consultation with the Oncologist
Let me start off by saying I did a very good job choosing my first consultation. I went to see Dr. Amy Fox with 21st century Oncology. She happened to have studied at the school that started Proton therapy ( a form of radiation that is more precise with less side effects) which is great because that was the type of person I was looking for. But she did say that it could be treated with photon radiation but some of the radiation will hit other parts of the brain. What I learned was pretty much that my tumor is very close to my pituitary which can cause hormone problems. Something which any of my doctors neglected to tell me.
Second, the doctor wanted her dad (also an oncologist) to look at my scans and to talk to her old professors about whether or not they think proton therapy would be more beneficial than radiation. So I am waiting on a call from her about that. She seemed liked she wanted to say do proton therapy. In children that is normally the course of treatment. But because I am an adult with a childlike condition and my brain isn't developing like a child I could handle radiation. But like I said proton therapy has less side effects. Quite the debate but that's all I know for now until I get that phone call.
Second, the doctor wanted her dad (also an oncologist) to look at my scans and to talk to her old professors about whether or not they think proton therapy would be more beneficial than radiation. So I am waiting on a call from her about that. She seemed liked she wanted to say do proton therapy. In children that is normally the course of treatment. But because I am an adult with a childlike condition and my brain isn't developing like a child I could handle radiation. But like I said proton therapy has less side effects. Quite the debate but that's all I know for now until I get that phone call.
Saturday, April 6, 2013
Conquer'd my Ironing Board Cover
This was my ironing board lifeless, ugly, stained, burnt, and starched to high heck. But Thursday night when I couldn't sleep I started watching YouTube videos and came across this idea. And it took me all of about an hour and a half to do.
Supplies:
1 yard of fabric
1 new mat (if your foam is bad)
Staple gun
Twine
Sewing machine
Minus the glue of course.
So I traced out the shape of the ironing board being sure to leave about an inch and a half all the way around so that way you have enough seem allowance to rely upon in case you cut yourself short.
It should look something like this... Next I then took the covered and added another inch and a half seem allowance to use for turn under.
So laid out in front of you is the cover of the ironing board and the cushion. I then did a 1/2 turn under ironed and then turned under again for additional support of the seam. Then sewed all the way around so that it looked like this.
I then took twine (cause that was all I had laying around the house) and threaded it through with a safety pin. The twine is going to be what allows you to tighten the cover around the board. Next I don't know if your boyfriend is crafty like mine so I had him take his staple gun and tack down the white board covering so that way there is no bunching when I am ironing. And he did such a great job! So when everything was done and said it came out so nice.
Don't mind my messy floors and table folks. I pushed everything around last night cause I was so excited to get this done. And if you ask me it came out wayyyyy better than any ironing board I have ever had. So good news I have enough of the padding left over if anything should happen to this one I can always redo it again. You get a standard size covering in the bag but since my sewing table is tight on room. I use a smaller ironing board but it works perfect for me!
I hope this helps one of you inspire a craft project... If not I get it. But they way I see it. I still have eyesight so while I do I am going to use it. Everyone have a great day!
Thursday, April 4, 2013
New Project to start (maybe)
As many of you know that I really love to sew. Well, lately life has had me down and just feeling really crappy about things. So I have decided that I wanted to start a new quilt... Maybe like I said. I'm sure I am going to get a lot of headaches and lay down a few times during the day to de-swell my forehead so I don't look like something off of the Munsters. But I need something to try and get me through all this and since absolutely no I know is pregnant with a gender yet... I have decided to go with a girl quilt this time. Maybe for Lillie..... Or not!
I went to the fabric store around the corner from my house and honestly I have been trying to make it in there for the last 2 weeks just been in Tampa in the hospital or trying to get things ready for when I do have to go to the hospital that I walked in and LITERALLy felt unstressed. Like nothing mattered in the world I was in my own element. I'm decent friends with the girls as I practically live there and just hadn't been there in a while. Well I was talking to the owner because she had asked where I had been and what I had been working on. All while I'm looking to buy coordinating fabric for my quilt. I put my fabrics on the counter told her the lengths and everything I wanted she put them in the bag and says this is on me!!!!
I started crying because honestly I was just happy to be at the fabric store in my own element happy as a clam not the girl with the brain tumor and all these health issues. I was fully going to pay for them too just for the record. So now I have fabric and coordinating fabrics for it. Now the only thing stopping me is my head lol! Reason for why I am up at 5 in the morning blogging because I finally got some sleep but woke up with a nice and splitting headache and my eye swollen shut.
So what do you think about the fabrics? Go together well?
I went to the fabric store around the corner from my house and honestly I have been trying to make it in there for the last 2 weeks just been in Tampa in the hospital or trying to get things ready for when I do have to go to the hospital that I walked in and LITERALLy felt unstressed. Like nothing mattered in the world I was in my own element. I'm decent friends with the girls as I practically live there and just hadn't been there in a while. Well I was talking to the owner because she had asked where I had been and what I had been working on. All while I'm looking to buy coordinating fabric for my quilt. I put my fabrics on the counter told her the lengths and everything I wanted she put them in the bag and says this is on me!!!!
I started crying because honestly I was just happy to be at the fabric store in my own element happy as a clam not the girl with the brain tumor and all these health issues. I was fully going to pay for them too just for the record. So now I have fabric and coordinating fabrics for it. Now the only thing stopping me is my head lol! Reason for why I am up at 5 in the morning blogging because I finally got some sleep but woke up with a nice and splitting headache and my eye swollen shut.
So what do you think about the fabrics? Go together well?
Monday, April 1, 2013
Surgeries Post op
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!
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!
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
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