Monday, January 30, 2012

My Crazy Week

So this is my last week of my recent " normal" life. To say the least it is beyond hectic and there is nothing normal about it. My headaches are back. They are back like they are mad at me. I think I built up some resistance to my meds but I only have 6 more days and I can do this. I know I can. I have done it for this long what is 6 more days. I will tell what 6 more days is to me. It 6 more days of being terrified of what could happen now. The person who said ignorance in bliss is by far the smartest person alive. Now that I know about my tumor everything is just a little more scary. The headaches mean more now. I had a moment the other night when it was so bad I wanted to drive myself to the hospital. But really what could they do for me. They could change me a ton of money to tell there was nothing they could do. So I go to bed and hope that it will be fine in the morning. I know what could happen to me. But I also have faith that I have enough love and support in my life that someone is watching over me and I am going to make it to my surgery. I know it's scary to talk about and to hear about but when my head hurts the way it does I'm not sure what's going to happen to me. Sometimes it feels like I'm not taken so seriously when I say my head hurts. But it's crippling. It hurts to laugh. Does anyone know what that feels like??? Laughing is suppose to me amazing even healing but it hurts. Standing still hurts, moving hurts, there isn't anything I do that doesn't hurt anymore. I'm so ready for the hurt to be over. Surgery is the scariest and happiest thing for me right now. Do I really want to have brain surgery. No No No... But as I sit here with my head throbbing I'm thinking it might not be as bad as my head hurting the way it does right now. Even if I get one hour out of the day where it doesn't hurt I consider it a blessing. I'm glad I'm done with work because that was really hard to hide it. But now I have so many activities planned. I don't know why I did this to myself. It was really me doing it not anyone else. It is very bitter sweet right now with it all. I want to do it all. I want to see everyone and I love spending time with them it makes me so happy. But I'm so tired. So where do I find the balance? I guess I will get lots of sleep in 6 days.
It seems every moment of everyday before my surgery is planned. Why did I do this??? I am the one who did it not anyone else. I know that but oh my goodness what was I thinking??? Just a small glimpse into my week. Today done. Tuesday starts at 10, I get my cousins for the day. I'm super excited but it will be busy. I am going to take them to all these fun activities and then dinner with my guys. I know that doesn't seem too bad but my day will start at 10 and end 10. Oh and did I mention my car is still full and I will have to unpack it before the day starting at 10. Then there is Wednesday. Oh Wednesday how I overbooked you. First I have a spa appointment at 9. Relax right. Then I'm supposed to have lunch with a friend. I might skip it. I have to return all my comcast items. Because they make your life easy. Not that I'm bitter about being on hold for 20 minutes just to cancel my service. I now have to return the equipment. Love Comcast.... Then I have dinner plans which I am very excited about because we are going to one of my favorite places. After that my friends are putting together an event for me at my other favorite place. So that day starts at 9 and ends till who knows. Now are you ready for Thursday. Oh I'm ready for Thursday. That is pre op day! Oh Joy another day of poking me, taking my blood, telling me my blood pressure is a little high, getting another MRI, the list goes on. And just when you thought it might not be that bad. It's in Tampa at 8:20 in the morning. Yes that is right my friends I will be out all night Wednesday and then Tampa first thing in the morning. And just when you thought things might slow down guess again, my sister is getting included that morning too! So you guessed it, I will be anxious to get home for the birth of my nephew. I just hope she can hold off until we get back so I can be there. Then on Friday I might take it easy. And by might I mean I'm going to lock myself in the bedroom, not answer the phone and lay in my pj's until my dinner plans. Or did I book Friday??? I can't remember I will have to look at the calendar. Oh I'm sure I will be at the hospital with my sister. The comes Saturday. I have brunch plans, then day with my brother, and then Jersey Boys with my step mom at night. Then comes Sunday. The day before the surgery. We will be going to the aquarium because I love it there. I have never been to the one in Tampa but I do love them so much. If they had one here I would go every week. So we will doing that and then Monday is my surgery. After Monday I don't have anything on my calender. It's kind of weird. It's like my whole world stops on that day and I don't know when it will start again. I wish I had something on there, but it's blank. Just blank. I want to know something. I want to have something to look forward to, even if it's another doctor's appointment. Something that says Dana you will wake up and you will be fine. I don't like blank on my calendar. I guess I'm really thankful that I have a crazy week with all these people who love me. I am lucky when I think about it that way. And I am really looking forward to each day I have planned. I just wish I had more time.

Friday, January 27, 2012

My Work Family

Everyday amazes me how caring people are. I feel that I have surrounded myself with the best group of people. It took me a long time go get to this point but the my family, my friends, and my work family are the best they have ever been. Everyday at work they have been so understanding of everything. It has meant the world to me. Like I have said before I know I'm not always easy to deal with and everyday they surprise me with the compassion they have towards my condition. I know I have been hitting a wall just around the 6 hour mark and I try to push through and everyone has just been so understanding about it. I don't expect it because I expect to be able to work my shifts but being sleep deprived catches up to me. The headache also catches up to me but I try and they see that. Work is my sacrad place right now. It's the one place I really don't cry. I'm not really sure why that is but I typically don't cry there.
Today the surprised me with and iPad! I couldn't believe it. They all pulled together to get me one. I am beyond touched. I don't have enough words to describe how that felt. To look around and see my work family supporting me and wanting me have something that I think will help with my recovery was overwhelming. It hasn't quite hit and I'm sure I will wake up and cry forever just thinking about. I have worked with a lot of people but my group in Fort Myers is by far the most caring and compassionate group of people I have ever worked with. Most of them I just met when I came back a few short months ago. They care so much. Everyday it amazes how one of them will just sit and talk with me and see how I am feeling and now they did this. I don't even know how to express my gratitude towards them. I love my work family and they are by far a very special group of people. A huge THANK YOU to my work family. I can't imagine working with any other group of people right now. They are all so special and I really can't wait to get better and get back to them.

Wednesday, January 25, 2012

First Day of Last Week of Work

Today was so much better then yesterday. I don't know if work makes things easier for me or if just in fact things were better today. I think it might be the work thing. My day started with my dad coming over to spend a little time with me. It was nice because it was his birthday and I got to spend time with him. Normally I would get the day off and do something special but instead I've got so much on my plate that I had to work because I already had my two days off. But either way it was awesome to have him over. The nice thing about my dad is I can have a competlety horrible day the day before and then the next he reminds me that it's a new day and to let go of yesterday. It's not always easy for me to let go of things. I harbor a lot of guilt for some reason. Everything makes me feel guilty. Getting sideways with my sister made me so upset. The last thing I want do is be in a bad place with anyone right now. Yesterday was just so horrible for me and I'm trying to focus on the days to come. The very scary days to come but I can do this. I know I can.
Work was great. I had such a good time today. We weren't crazy busy but I was busy enough to keep my mind off of my awful yesterday. I truly appercitate everyone at work right now. They have all been so kind and understanding. I will miss all of them while I'm out. My bosses have been even better than I expected to me. I just wish there was more I could do for them. Don't get me wrong I know I have my moments where I'm difficult to deal with and they have really been great with that. I'm ready for work to be over for me. As much as I love everyone there and they have all been so great I am ready to be with my friends and family a little more. Who knows how long it will take me to get back to me so I just want to cherish these moments I have right now with my loved ones. There just isn't enough time for me to spend with everyone. I only have 4 more shifts so I will make the best out of it.

Ups and Downs

Yesterday was filled with ups and downs for me. I would love to be writing telling everyone that my ups out weighed my downs but that is not the case. I'm still upset about my day yesterday. I don't know when I will feel better about it. It might be the start of the the downward spiral I've been afraid of for so long.
I will spend a minute to talk about the best thing that happened yesterday. I got to meet Norman Love. It was so amazing for me. He took me through the BOH and showed me his whole operation. It was by far the coolest thing I have ever done. I think he is so great and everything he does puts me in awww. It couldn't have been better going there. And I got to leave with a box of chocolates. :)
Now on to what I can't stop thinking about. My day as a whole was awful. I started by bringing some things over to my dad's house. Not easy. I don't want to move back home. I'm 28 I should be living on my own and enjoying life. Not moving back home with a life threatening brain tumor. What don't they get about that? I walk into what is now going to be my bedroom and it's not even cleared out. How am I supposed to move my life into a bedroom and not even get the whole closet? Why do I have to share storage with others? I am getting a bedroom and closest, that's it. It should be empty. I should get the whole thing. I'm so upset with my sister and my dad about this. I don't want to move home. What don't they get. This something I have to do. I don't want a brain tumor. I don't want to have constant headache. I don't want to see double. I don't want the feeling that someone smacked me in the knees with a crowbar. But these are the things I have to deal with. It's not fair. I put so much good out there. I try to pay it forward as much as I can. I don't deserve this. I shouldn't be having brain surgery at 28. I just want something to be easy. Nothing is easy in my life anymore. I want some more understanding. More compassion. I don't want to fight with people right now. What don't they get. This is the last thing I want to do right now. I just want to be normal. I will never be normal again. Ever. My life is changing and I don't want it to. My surgery is getting closer and I'm trying so hard to roll with it and simply I don't want to. I just want to be able to take care of myself and I won't be able to. I have to depend on others now. I haven't had to do that in a long time and it's not easy. Nothing is easy anymore. Why can't something be easy. Just one thing is all I need right now. The tears haven't stopped, they have carried over from yesterday to today already. I know have to figure out how to my whole life into a bedroom and a half closet because I have to share storage with someone else. I'm so angry. Why can't I have the whole closet. I have to spread my stuff between 3 houses. 3!!!!!!!!!!!!! It's awful. I can't believe I have to do this. I already gave away a ton of things and now I have to spread them out too. Not easy. Not Fair. I have to make a ton of sacrifices for my condition. I don't want my condition. I know life isn't fair but really this????

Monday, January 23, 2012

Good Days

It feels good to have a couple of good days. Sunday at work was amazing. It was the least stressful Sunday I've ever had. I don't know if it was the games or the fact that my crew is so awesome to me but it was a wonderful day. They even let me leave early. I was able to come back to my condo and spend time with my cousin from out of town which helped me so much. It was so nice to sit and talk to her. We were able to talk about everything and she gave some really great advice on how to deal with some of the challenges I've been facing. My hardest thing is I don't want to hurt some one's feelings or say something that might upset them I am just on edge all the time. I try really hard not to be but I never know what will trigger me getting upset. It could be anything. I never know and I will just blow a gasket for no reason. I think it just how I've been dealing with everything. I guess I'm still waiting for it to really hit me. Everyone looks at me and I can see it on their face, they want to cry. They are upset for me., They are upset that I'm not upset and can't understand why. I don't understand why either. I have no clue where my strength comes from. I should be crying more. I know that. But the tears just aren't ready to come yet. I don't know if it's that I have so much to distract me right now, I can't help but wonder how my next week will pan out for me. All I know is that the past two days have been great and I am hopeful that tomorrow will be great as well. I only have 5 more shifts at work and I have to hold it together. I can't be weak now. I have to push through and I will. There isn't another option for me. I can do this and I will be able to look back at these moments and be proud of myself. I have so much to look forward to in the next two weeks it helps keep my mind off of my surgery. But after these two weeks I don't have anything to look forward to.
I know I will be fine. I keep telling everyone that. I keep telling myself that so why can't I look past my surgery. All I see is myself laying in bed at my dad's house refusing to see anyone. That's not me. I love company. I love when people come to see me to hang out but that's all I can see right now. I hope that I am wrong and that I feel like seeing everyone but my fear is that I will become someone who is a hermit. Surgery is scary to me and I don't want to do it. I just don't. I want any other option. I don't want them to cut my head open. I try to talk about it as much as possible to get used to it but then when I do I see that look on the faces that I'm talking to. The look is scared. The look of tears welling up and people holding back. So why is that I can talk about it. It doesn't seem normal that I'm not crying. When does it hit me. When does the news cripple me to the point I can't leave the house. That's what should be happening, right? Maybe I won't get to that point. One can hope. I have a lot to look forward to tomorrow. So I'm very excited for my big day so I won't be breaking down tomorrow.

Sunday, January 22, 2012

My Potluck

My potluck was the most amazing time. I was little worried at first that it might become some what emotional. It was not like that at all. So many people showed up. I was to touched by the crowd that came. Everyone brought all of my favorite foods and I don't think I've ever been so full in my entire life. I just can't get over how amazing everyone was. The whole event was such a success. I have such a great group of people that truly care about me and just wanted me to have good time. People even came from out of state and out of town for this. I just want to sit here and gush about it. Thank you everyone for everything. I just want everyone who reads this and came last to know that it meant the world to me to have you all there. I just wish I could have spent more time with everyone. I love you all. And thank you for the ones that couldn't attend for sending me special messages and I knew you were there in spirit with me.

Friday, January 20, 2012

Am I pushing myself too much???

As I sit here on my couch tired again I can't help but wonder if I'm pushing myself too much. I know that I keep talking about the same things that are bothering me so now the questions arises is it too much right now. I only have a few more shifts at work but each one is so very hard. I'm doing my best to not complain because my job has been beyond amazing to me in my situation. All I want to do is work hard for them because they are taking such great care of me. But I must say it's hard. So hard to hold it together all day and night. I don't always feel the need to break down and cry but I do need to sit down more and laying down would be nice everyone now and then. I'm so aware of every tiny thing I feel in my head right now. I had a headache all day. It wasn't a terrible one it was just that I was so aware of it. The steroids help so much but I can't forget the things that would trigger my waves of pain that used to cripple me. I' m nervous every time I bend down to pick something off the floor. I hate that. I just want to pick it up. I don't want to be scared. It's hard to share these things with everyone, especially at work. I don't want people to feel bad for me but I don't want to go around picking up after them anymore. It's just too nerve racking.
I think to myself that I am ready for my surgery. I just want it to be over. I want to be better. But then I really think about things. How my life is changing even before I can get used to it and I just want my world to be on pause until I catch my breath. I'm not sure when I will be able to catch my breath at this point. My whole life is about to change. Nothing will ever be the same for me again. EVER. I will always be the girl that had brain surgery. I will always have to get MRI's. I will have medical metal in my head. I try to down play everything that is happening to me, but at the end of the day it's scary and I wish it wasn't happening.

Thursday, January 19, 2012

Today was good

I'm not sure what made today different from any other day but it was a good day. It started off like all the others, not being able to sleep. Now that is getting old. It's all I want to do. But instead I got up and made myself a nice little sandwich and started my day.
I think I just like feeling useful. We had a meeting at work and I was the one that got to pick up breakfast. I know it's a small thing but doing little things to make others happy really pleases me. After my meeting at work I was able to show the new manager around town a little bit. Now I know I should really be doing things like get my life together but showing him around town made me happy. I know how hard it was for me to move to the other coast and how much I hated so I just don't want him to feel the same way about my beloved Ft. Myers. I think he will like it and I'm sure that he will fit right in here.
My night at work was like any other. Tough. Work is the hardest thing I have to do now. It's not because my job is difficult, it's because I'm irritable. It's now any one's fault or anything they say it's just me. I run at constant state of being irritable. The last thing I want to do is to snap on someone over something trivial but I'm nervous that it's going to happen. The headaches I have are so different from what I am used to. They are more at the front of my head now and at work they are awful. I'm not sure if it's just that my mind is everywhere right now or what. The one thing about being at work is that everyone has been so nice and I can tell that they truly care about how I am feeling. It makes me want to be myself that much more. They have all been so wonderful to me and I just want to be wonderful back to them. So when I think about the whole of my day today it was pretty great. I'm really going to miss everyone at work. Today it just seemed like the crew that was on was so caring. I got asked countless times how I was feeling and it wasn't because they were going through the motions it was because they really cared.
On a small side note. I am beyond excited for my Potluck and I can't wait to see everyone there!

Wednesday, January 18, 2012


Why is sleeping so hard now. I used to be able to sleep without a problem now I'm up between 4 and 6 and cannot go back to sleep. It's awful. They tell me resting and relaxing right now is important but how am I supposed to do that. Today I woke up with a new set of problems. My legs hurt. I mean so painful I can't sleep hurt. I don't have any clue what happened or if it is a side effect from the steroids but they hurt. Hopfully the advil I took will help but I have to work tonight and pretend like I'm okay. Meanwhile I'm in pain, I'm sad, and I'm tired but it's my problem not anyone else's. I'm sure the rest of my day will shape up to be a good day but for now it's not starting strong.

Tuesday, January 17, 2012

Another Appointment

Today was another appointment day for me. I am starting to get used to them. They are all the same now. They all do the same tests and say the same things to me. I could almost host the appointments now. Each doctor does offer more information but at the end of the day they are saying the same thing to me.
First they tell me that I'm going to be okay. I know this. I don't need them to tell me. I am young, healthy, non smoker. Of coarse I'm going to be okay. Are kidding me??? If I'm not then clearly I'm with the wrong people. So I sit there and smile and let them tell me these things. I have to admit as much as I know it's still nice to hear, even if it's only in one ear. I thought my new team member was fantastic. He seemed very confident with his portion of the surgery and very knowledgeable with the whole of what to expect.
Today I learned that I can't hear out of my right ear. I have known this for sometime now but it's official now. I also learned that it's never going to come back. There's noting they can do for me. The ringing that's in that ear is always going to be there my whole life now. When I heard that I sank. I was never hopeful of getting my hearing back but I was hopeful that he ringing would stop. The doctor explained it to me that I will get used to it and it will become something that I will be able to tune out. That is just crazy to me. As I sit here it's all I hear. I just want it to stop even if just for a minute just stop. I wonder if I will ever be able to enjoy quiet again. I also learned more about how they are "going to get in there" Let me tell you how much I love hearing that. Get in there.... That's my head, my brain, everything that controls everything is in there. He tells me where they are going to make the cut. It's going to be behind my right ear. I will never be able to grow hair there again. I will always have a scar on the back of my head where hair won't grow. These are not the things I want to hear today. But they are the things that I'm hearing and accepting as the new me. Also they have to put a titanium plate back in my head to make up for the parts that they will remove and be unable to re-attach. I keep waiting for the appointment where they don't tell me anything scary. I'm tired of only hearing bad things. I know not everything is doom and gloom but I could really use a small break right about now. My whole everything is changing. I just want to push pause and be 28 without any problems, even if it's only for an hour.
My next appointment is Feb 2. I will get another MRI. That will be the one they use to perform the surgery. I am told that for the first 24 hours after my surgery I will be alone. I will have to remain in a sterile environment. After that mom and dad will be able to see me. If I do okay with that by day 3 in ICU I should be able to have 2 other visitors that will be able to stay with me for a few moments. But it will all depend on how my recovery is going. We are all hopeful by day 3 I will be moved to a normal room and not ICU but there is no way of telling now. In a perfect world I will be out of the hospital in a week and on my way home to recover. I'm hoping for a perfect world but they won't know until they " get in there"

Sunday, January 15, 2012

Today was Tough

To say the least today was a tough day for me. I always start my day the same, wake early, eat breakfast, shower, go to work and try not to break down. Well today it just didn't work out that way. I broke today. I have moments all day that I just want to cry but I suck it and push through knowing that it is only a moment and I'm going to be okay. Today I was not so lucky. I had a moment and the tears just didn't stop. There wasn't anything I could do to stop them. I tried so hard, I don't want to cry. I don't want to be that person that can't handle their business. But I was that person today. I cried because I was sad. I cried because I was short with someone. I cried because I don't want to be sick. I cried because the ringing in my ear won't stop and I would do anything for a quiet moment. I don't want to cry it makes me feel weak. I should be stronger and I should be able to handle this. I just couldn't today. Everyone tells me that it's okay to get like this but I just don't feel like it's okay. I just want to be myself again.

Saturday, January 14, 2012


For as long as I can remember I've been clumsy. I mean walk into walls clumsy. It's something that I never thought much about. It is who I am. I've always said that the guy that can find it endearing would be the guy for me. It's annoying being so clumsy sometimes but not it's scary for me.
After the doctor told me not go on roller coasters or to do anything out of my normal routine I really got to over thinking things. What happens if I fall? It is possible with me. What happens if I trip going up the stairs? I've done it before. What if I walk into someone too hard? I'm sure that I will be fine but it doesn't make it less scary to think about. I'm not really sure what would happen if anything at all but just thinking about the possibilities are too much. Everything is just so close to getting better. I know what is wrong with me and all I want to do is protect myself.
I'm work and I'm terrified of everything there right now. I've never been afraid of getting hurt. It comes with the territory of being clumsy. I'm afraid someone is going to drop a tray on my head. I know that thought is absurd. In all my years working in the restaurant business I have never ever seen that. But it doesn't stop the thought from going through my head every time someone passes by me with a tray. I'm so afraid of being bumped too hard. I mean could anything really happen to me by someone accidentally bumping into me? No! But it still scares me. And just through in my norm of being clumsy. By the time I leave work I'm beyond stressed out from my own doing. How do I stop the thoughts? I know how absurd they are. But they don't stop. As hard as I try to not think about my condition, it now consumes me.
I try so hard at work. I don't want this to affect me. I want to be strong. I'm a worker and I want to stay that way. I start my day off great but by 5 I'm a mess. The ringing in my ear is constant. My thoughts are overwhelming. And there is the headache that is there. The medicine helps but doesn't make to go away completely. Every fiber in being wants me to just go home and lay in bed. But I can't do that. That's just not me. I am social, I like to talk to people but right now I just want quiet. No ringing, no buzzing, no talking and most of all I just want my brain to shut off for a few minutes. Hopefully soon I will get some peace. There is nothing anyone can do for me, it's something I will have to figure out how do for myself.

Friday, January 13, 2012


It amazes me how one song can change your day. I was driving home from work tonight just having a woe is me moment. My head hurt all day and all I wanted to do was sleep. So instead of talking on the phone I turned on the radio. And what do you know it "bad" 90's rap was on. OMG I was in heaven. My bad day slipped away from me and before you know it I was rapping along and car dancing. It felt great! I know that I have bad taste is music but boy do I love that 90's rap. Oh Sally! Then after that a little Tag Team. I couldn't have been happier. Now I sit here having a small adult beverage and youtube surfing of "bad" 90's rap. Now I just might mix it up with the 80's and I will end up dancing in my living room. Sometimes it's nice to live by yourself because let's be real no one wants to see or hear that. I know I shouldn't quit my day job. My new item on my list is to have the most amazing play list for my potluck. Oh it will be all 80's and 90's so all attending be ready for a night filled with the most wonderful awful music you can imagine! I will be taking requests.

Thursday, January 12, 2012


Well today was the day that I have been waiting for. I got my dates for my new life. It's amazing how one phone call change everything. My new life will start on February 6th at 7:30 a.m. The phone call wasn't as scary as I thought it would be.
I shake now. It's funny how that happens, it's more like a tremble in my body that I can't control but it stops when it's ready. So the phone call made me shake. I spoke to a wonderful women who had all my appointments set up for me already. I haven't even had my surgery and I can feel my Independence slipping away from me. I don't get to pick and choose what works best for me or what I want anymore, I am told. I fully understand that everything everyone is doing is what's best for me but it doesn't make it easy for me to let them do it. So I am told that I have another appointment with another doctor on Tuesday. So I will be traveling to Tampa for that. I am told that I have another MRI on the 2nd in Tampa and then I am told the date that is going to change my life. February 6th. I don't know what will happen to me after that. I don't know if I will be the same person. People say things like this change you. Well I want to know how. How will I be changed? I am a confident, caring, independent women. I don't want to change those things about myself. I don't want to be weak. Never mind the deformities I will have I am now more concerned with my soul. Who I am. What I stand for. I'm so afraid to lose that. People care about what I have to say because of my outlook on life. I can't help but wonder if that is going to change. I will be determined to be not let this change me. I will still be me when this is over. I will just have to learn to let people take care of me for a little bit.

Dates to Remember:
Jan 17th- Dr. Appointment
Jan 21st- POTLUCK!!!!! Everyone is invited. At my dad's house. Starting at 6-whenever.
Jan 23rd- Sister giving Birth
Jan 29th- Last day of work
Feb 2nd- MRI+pre op
Feb 5th- Travel to Tampa and stay over night
Feb 6th- Surgery Day 7:30

Wednesday, January 11, 2012


I would like to take a minute to thank each and everyone of you for your comments and your views to my blog. I don't think you all know how much it means to me. As I see my number climb and each new comment I am overcome with emotion that so many people care about me. Thank you for your continued support and your kind words give me the strengh that I need to know that things are going to be okay for me.
I will keep things short tonight since it is a pretty bad headache night for me tonight. I don't know if it's the tumor, the stress, the joy or the combination of everything that has brought upon this lovely headache I currently have but I will take it because my day has been so great.
I actually slept until 7:30 today! It felt amazing. I haven't slept that late in weeks and to boot my phone didn't ring until 8:30. Such a great start for me. I made lunch plans with a friend and got myself a lazy morning combined with a great meal and great company all before work. Who could really ask for more at this point.
I had such an emotional day yesterday and today all I really wanted to do is lay in bed. ( I'm happy I didn't) I was having such mixed feelings about going to work. First there is the whole I'm tired and I don't know if I can do this thought. Then there's the how can I let work down thought. Me being me, I go to work with the view that it is my sanctuary right now. When I'm at work I'm not the girl with the brain tumor I'm just a person who works there. None of the guest there need to know what I am struggling with so I get to listen to their complaints and fix them. I don't mind because it feels good to fix something that is wrong. I may not be able to fix me but I can fix some one's meal and make them happy. Everyone at work has been so amazing as well. My co-workers, my bosses, and my staff they have been nothing but supportive.
I will not be doing one of the things on my list and I just hope that one day I will be able to do it. I was told that I cannot go to Universal to visit Harry Potter World. I know that this may seem small but to me it was big deal. I'm afraid that I will never be able to do something like that again. Going on any rides is not an option for me. I'm not sure if it is something that I will ever be able to do. Who knows what will happen to me after my surgery. I have been told about all of these awful things I will encounter so my brain can't help but think what else....

Tuesday, January 10, 2012

The First Appointment

No matter how many times I hear it will always sound strange. I have a brain tumor. Today was by far the most awful to date for me. It gets a little more real everyday and now that I have a hospital I will be going to and a doctor that will perform the surgery it's real. There's no more hope that the MRI could be wrong, no more second opinion that has a better outcome just the facts now.
The fact is that is larger than I was original told. The fact is they only way to get better is to remove it as soon as possible. I am told that I may have to have multiple surgeries now. They won't know until they get in there and see how the tumor is attached and how dense it is. Even as I sit there and listen to everything that is being told me it still seems so surreal. I don't know how this happened to me and I don't know how I didn't see the signs before I got to this point. I am so angry and sad all at the same time. At every moment I want to lash out and scream and then cry but I don't. I try to stay strong, but today I don't want to be strong I want to cry. I want to cry to my parents, my doctors, my family and my friends but there is nothing they can do to help me. So I just hold it in. This is my new life. I know I will overcome this but as the doctor told me today " it's going to be rough year" YEAR!!!!
I am told my recovery could be anywhere from two months to a year. My heart sank. Am I ever going to be myself again? Sure everyone tells me that I will be but how is that even possible. There are so many things that can happen to me during my surgery. I can lose control over one side of my face, I might lose the ability to walk for sometime, I might not be able to swallow and I will never get my hearing back to normal. I know have been told by 4 doctors that one side of my face is droopy. That breaks my heart. Every time one of them says it I hold back the tears. My face will now always be droopy on one side and I understand that it may not be noticeable to others but now it's all I see.
Today was so hard for me. I am struggling with my own emotions and still trying to be sensitive to others. I feel guilty if I am rude to a nurse or my parents. I know so many are out there to help but today was a hard hard day for me. I never want to hurt anyone else's feelings but I am having a hard time controlling my own feelings right now.
I should know more about my surgery in the next couple of days and I will try to have a better day tomorrow but I feel that I am allowed to have my bad days and today was a bad day for me.

Monday, January 9, 2012

My Day Off

First I would like to thank everyone for their support in my journey and it means so much to me that you all have taken the time to view my blog and let me tell my story. I have fixed it so if you wish to leave comments, please do. I would love to hear from anyone.

So my day started out today like most others, uncomfortable. All I want to do is sleep past 6:00. I don't want to be up that early, I'm not a morning person and I don't have the motivation to get up and get coffee that early. So what do I do, I go on Facebook. Mistake! No one should know that I'm actually up that early, then they think it's okay to communicate with me. Little do they know I'm a morning monster and should really just lay their be quite and hope that I might actually fall back asleep. So I start ignoring everyone, fb messages, phone calls, and text messages then finally around 8;30 I give in. I drag myself out of bed let some visitors over and have coffee and start taking phone calls. I know everyone cares and they all just want to check on me but all I want is a day off from my new normal. I want to pretend that I can see single without my glasses, I want to not have a headache and I don't want to be a bitch anymore because it's really not me and I always feel super guilty afterwards.
I make the decision to have a somewhat normal day today. I'm going to do it and it's going to be great. My cousin comes over and brings the kids which made me very happy since I have been avoiding everyone. I have coffee ( to protect the little ones from my morning monster inside) and I sit and have a normal conversation. It felt great! I was able to talk about some of what I have been going through and she sat their and just listened and it made me feel so good. I would normally go lay on the couch and let the headache take over but not today! It was a " normal" day I was going to have. I got dressed and went to the library with her and the kids. I got to talk to my best friend on the phone and I can't tell you how wonderful it felt today. I was so blissfully happy to just have a day that didn't include a dr's phone call or appointment or laying on the couch all day. I stayed at story time for a bit and then had lunch with a good friend that I haven't seen in awhile. Another great thing for me. Once again I was able to open up and I think that is key for me right now. I started caring more about getting it out of me then concerning myself with upsetting someone with my news. My friends and family have been more supportive then I could imagine. I am blessed to have all these individuals in my life. After lunch I decided that I needed my haircut. After all they will be shaving it shortly so I might as well have the short haircut that everyone talks me out of.
I call my girl only to find out that she has moved to Bonita and they aren't sure of the name of the salon. I try two other places only to find out that they are closed on Monday's. I am determined, I'm getting my haircut today and nothing is going to stop me. I remember that one the Chef's wife works at a local salon so I drive right over. I walk in the door to find her and she tells me that she had a cancellation and that she has time for me! I was beyond excited. Not only was it someone I trusted it was someone that knew my story and already knew what was going on with me. She treated me so well from the moment I walked in the door. We were really able to talk about my hair and about what I was about to encounter with my future. I have never met someone who was so nice and so easy to talk to. I showed her the pictures and she made it happen. There are still some things that I am not comfortable with and I do struggle with them at times and she put me right at ease. I have gotten used to not hearing in the one ear, I have gotten used to the constant ringing but I have not gotten used to the fact that I have to have my glasses on. I tried to take them off and my immediately favors on side and it starts to turns to try and compensate for the vision. She made feel as though it was no big deal to leave the glasses on and the flushing in my face went down right away. At times I was a little embarrassed because of my eyes and all I want is to not wear the glasses. I even tripped on the way back to the chair and at that moment when I wanted to cry she helped me laugh it off like it was nothing. I am so grateful for the most amazing experience I have ever had with a haircut. I swear I don't ever want anyone else to touch my hair. Thank You Natasha at the Rock!
My day ended with a great meal with great company. I had the best day off I had in awhile. Who knows what tomorrow will bring for me. I have my appointment in Tampa and I'm hopeful for good news.

Sunday, January 8, 2012

The Start

Today will be my first post to share my journey with everyone. I will try to update this as much as possible but I will not make any promises on how often I will do it. My journey started years ago before I could even realize to where it would bring me today. I will never forget a day at work when someone dropped a stack of plates next to my ear and I started to lose my hearing. I thought nothing of it and figured things would work themselves out. Well things don't always work themselves out. I ignored my hearing loss and just kept moving forward with life and getting caught up with everything it has to offer.
Now fast word to a year and a half ago. I started getting these terrible headaches. Crippling they were so awful. I didn't like to talk about them because I felt that I was just complaining and everyone got headaches. I went to the doctor a number of times for them to tell me that I had sinus problems. So every time I would just take more allergy medicne thinking I was doing the right thing. By now I lived in Miami and hated it. I hated it more than anyone could really know but I loved my job and just wanted to do the best I could. With my health in the condition it was in started to reflect in my work and I heard many of times people telling me that they didn't know what was wrong with me and Miami couldn't be that bad. I got so lucky and was moved back home to Fort Myers just a few short months ago. Once I was home my headaches got the point where something had to be done. I started making more doctor's appointments and seeing someone to help me. The doctor ordered blood work and told me I was boarder line anemic. I was grateful because I thought that I had the answer so I started to be more pro active in fixing it. But I was wrong once again. Another night at work and it was all bad. I was light headed, seeing double and running into things. I had bruises on my arm from that night at work and I knew something was seriously wrong with me but I wanted to push through work to prove that I could do it and I wasn't week and I had what it took. A couple of days later I leave for vacation and I visit NYC to see my best friend. I felt a little bit better but was still having trouble with my vision. When I got back from the city I went into a Lens Crafters to get my eyes checked. The eye doctor there knew enough to know that my double vision was not going to get fixed by new glasses and sent me to a specialist. I'm still thinking everything is going to be okay and I'm not too worried. I go to the specialist and he orders a MRI.
That might have been the scariest thing for me to hear at that moment. They schedule it rather quickly and one of my very dear friends takes me so I don't have to go alone. I should have known something wasn't right when they asked me to wait so they could call my doctor. But me being me I said that I had enough and had to leave for a bit and that I would come back. When I came back they informed me that my doctor was in surgery and that he would call me back. I thanked them and went on my way with my MRI disk. I tried so hard to not look at because I really didn't know what I would be looking at. I loaded it in my computer and wouldn't you know I had no clue what I was looking at so I popped it out and waited for the doctor to call me back. I missed his first call so I had to wait for the next day. The next rolls by and I go to work and while at work I get the phone call. It's the kind of call that you never expect to get and don't know how to react to it. I had a brain tumor.
After hearing those words I didn't know what to say or what to do so I just thanked him for the information and that I would have to call him back when I had a free moment. After letting the news set in I called my parents and told them. They really didn't know what to say either. I basicly dropped a huge bomb on them and then went back to work. I called the doctor back and asked him a few questions but he really couldn't answer a whole lot because now I needed a new specialist. A day later I had a new doctor with a new appointment and more anxiety then I could handle.
We are now at last Friday and I am in the office of an amazing nerololgist. My parents are with me and I'm just doing my best to not freak out on them beacuse I know they are there to support me but I am so scared to learn my news. I go into the office and we wait. It seems like forever but it was only a couple of minutes. Dr. E pops in my disc and says the words again that I have a brain tumor. A large one at that. I knew it beacuse I had already heard it but hearing it again doesn't make it any eaiser. He tells me all my sympotoms like I have told doctors before him. I am amazed that he knows How could the others not know?? It seemed so simple when he spoke to me. He takes the time to tell me that the location and the size of it not favorable. He tells me that the surgery is 10-16 hours long. He also tells me that I will encounter defects. My whole world just stopped. How could this happen to me??? I sit there and talk to him. I don't cry and I just take it all in. The tumor is next to my brain stem. It's in a really bad place and I have to get through this. I will get through this because this is who I am. I am not going to lose who I am in this journey. I will be the same postive person and what ever defecets I have I will overcome! I meet the the Chairman of Neorlogy on Tuesday and hopefully he will be able to perform the surgery. I will be in the hospital for sometime after the surgery and I will have to go through rehab from what I am told. I will have more news after Tuesday for everyone.

Somethings I want to do before my surgery....
Pre Surgery Pot Luck ( everyone is invited)
Go to Universal to Harry Potter Land ( I don't know if I will be able to after the surgery)
Buy an iPad ( I think it will be good in recovery for me)