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

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.

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.

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!

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?

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!