Saturday, February 25, 2012
My head hurts
My head always hurts. All I want to do is cry but that makes it hurt more. I hate talking on the phone and I only like visitors sometimes. They said the survey wouldn't change me but it certain has. I wouldn't even go out to lunch today. I just want to be back to my old self again. You know where you don't need a walker to get around or a special toilet or shower.
Thursday, February 23, 2012
I'm home
I'll make this short beacauce it is not easy to type. I haven't been taking phone calls because it is not easy to talk on phone. I haven't been taking a whole lot of visitors beacuase it's not easy. My whole side of my face droops. Every time I look in the mirror my heartbreaks a little more. I know the tumor would have killed me but this makes me wonder if I will ever be normal. If one more person tells me I look great I just might scream.
Sunday, February 5, 2012
Surgery Tomorrow
Things are going to be short tonight. Surgery is tomorrow. I'm scared and don't want to do it. That simple. I love everyone's support and that's what getting me there. I have had so many inspiring messages today and for that I thank everyone for keeping me strong. I am nothing without my support system and it grows every minute. To give everyone a little run down of how tomorrow will go for me. I arrive at Tampa General at 5 am to start my life journey. My surgery will start at 7:30 and last 8-10 hours. After my surgery I will be moved to recovery area where they will wake me up and get me stable. Once I am stable they will move to ICU where I will live for the next few days. If things look good they will move to a regular room and then I should be in there for about five days provided everything went well. My whole stay will be at Tampa General. I know everyone will want to call so please don't be offended that I won't answer. I will check my email and respond as much as I can but the phone might be out for me. My dad will be sending out his email soon. My email: dknox1010@hotmail.com
I can do this. I will do this and I will be ok.
Saturday, February 4, 2012
The Anxiety is Setting in
As I get ready for my night tonight I apply my make-up for the last time. I know that I will wear make-up again but it won't be for a long time. I apply with one eye open because the double vision still hasn't gone away when my glasses are off and I just hope that things are even. Then again I have the fall back of the whole tumor thing if anyone was to give me a really hard time about it. But no one does so I must have done a good job. I will be so happy when I don't have the double vision. It is really bothersome to me. Between that and walking into things it's getting really old. I know I have said it before but I hate the bruises. I actually put make-up on the one on my arm tonight in hopes that it would help. I don't think it did. I'm not sure why the stay so long. I have the same bruise for what feels like weeks and it's still ugly and still big. I just want it to go away. At least the ones on my legs and covered and no one has to see those but me. And since I haven't been working there are less of them. I would run in to chairs all night so they are chair height on my legs which means easily covered.
With my surgery rapidly approaching there are some things that I can't stop thinking about. One the surgery scares me. I really don't want them to cut open my head and replace it with a piece of medical metal. It just sounds so unpleasant. I don't want to be put asleep for 8-10 hours either. Another scary thought to me. I'm also waiting for my freak out moment. It will come. I know it. I am just waiting for it. I'm not sure what will trigger it and I'm not sure if I will be able to calm down. All I know is that I have had panic attacks in the past that are hard for me and I really haven't had one with this yet. A little odd for me. My situation should cause the ultimate panic attack. The formula for it is all set up. So why no attack. Am I building it up. Am even going to have one. My hope is that when the attack sets in I will be at the hospital where they can treat it. I'm trying really hard to stay positive and upbeat and not let my pain get in the way of living life this past week. I think I have been good. I have really enjoyed my time with all my friends and family and tomorrow will be my last " normal" day for awhile so I will try to enjoy that too without any freak out moments. Everyone keeps telling me that it's ok to have moments like that. But I don't like them. They make me feel bad and I tend to take out my anger on the one that I love and that's really not fair to them. They all tell me they understand but they don't. I feel terrible when I mean to someone. And I'm always mean when I am freaking out because in my mind I am the only one who knows how I feel and I expect everyone to know. It's unrealistic I know that but that's what I'm feeling in one of those moments. So I will have my panic attack, I will say things I don't mean to the people I love and then I feel bad about it for days after. I hate that. I don't want a freak out moment. I just want to stay strong walk in the hospital, check in, have brain surgery, and come out of everything the same way I went in minus the crippling headaches.
The other things I can't get off my mind tonight are how I didn't know. I have been replaying little moments in my life where I should have known to get help. There where the moments at work where I would get a flash headache, have to stop, stand still let it pass and then go back to work. Why didn't I get that checked out? Or there are the times where I couldn't stand in the shower and would sit down and shower. Why didn't I get that checked out? How about the times when I would tell people when they would ask me what's wrong that I had a headache and at any given moment they could be talking to me and I would have a headache. Oh and the times where I would lie on the tile floor because I was hot and had a headache and it was the only thing that made me comfortable. I should have been more pushy with the doctors. I always just accepted that it was a sinus infection or allergies. Every time I just accepted it. Reflecting back on all these incidents I should have pushed more. I should have talked about them more. Maybe someone would have pushed me if I took the time to let someone into my world of pain. But I never wanted to be one of those people that complained all the time so I just kept in. I just kept working through the pain thinking that this round of allergy medicine would do the trick. I had my little headache cocktail if you will that took the edge off. It was one Zyrtec D and two Excedrin. Everyday the same thing. And if I didn't take a ZyrtecI thought my head would explode. I needed them. But in the end I didn't need them, I just need a doctor who knew what he was doing. One who listened and wanted to get the root of the problem rather than masking the symptoms. I swear I will never go to a normal doctor again, I will always go to a specialist. This whole experience has tought me so much already. I look forward to what things I will learn after my surgery. One more day.
I can do this. I will do this and I will be ok.
With my surgery rapidly approaching there are some things that I can't stop thinking about. One the surgery scares me. I really don't want them to cut open my head and replace it with a piece of medical metal. It just sounds so unpleasant. I don't want to be put asleep for 8-10 hours either. Another scary thought to me. I'm also waiting for my freak out moment. It will come. I know it. I am just waiting for it. I'm not sure what will trigger it and I'm not sure if I will be able to calm down. All I know is that I have had panic attacks in the past that are hard for me and I really haven't had one with this yet. A little odd for me. My situation should cause the ultimate panic attack. The formula for it is all set up. So why no attack. Am I building it up. Am even going to have one. My hope is that when the attack sets in I will be at the hospital where they can treat it. I'm trying really hard to stay positive and upbeat and not let my pain get in the way of living life this past week. I think I have been good. I have really enjoyed my time with all my friends and family and tomorrow will be my last " normal" day for awhile so I will try to enjoy that too without any freak out moments. Everyone keeps telling me that it's ok to have moments like that. But I don't like them. They make me feel bad and I tend to take out my anger on the one that I love and that's really not fair to them. They all tell me they understand but they don't. I feel terrible when I mean to someone. And I'm always mean when I am freaking out because in my mind I am the only one who knows how I feel and I expect everyone to know. It's unrealistic I know that but that's what I'm feeling in one of those moments. So I will have my panic attack, I will say things I don't mean to the people I love and then I feel bad about it for days after. I hate that. I don't want a freak out moment. I just want to stay strong walk in the hospital, check in, have brain surgery, and come out of everything the same way I went in minus the crippling headaches.
The other things I can't get off my mind tonight are how I didn't know. I have been replaying little moments in my life where I should have known to get help. There where the moments at work where I would get a flash headache, have to stop, stand still let it pass and then go back to work. Why didn't I get that checked out? Or there are the times where I couldn't stand in the shower and would sit down and shower. Why didn't I get that checked out? How about the times when I would tell people when they would ask me what's wrong that I had a headache and at any given moment they could be talking to me and I would have a headache. Oh and the times where I would lie on the tile floor because I was hot and had a headache and it was the only thing that made me comfortable. I should have been more pushy with the doctors. I always just accepted that it was a sinus infection or allergies. Every time I just accepted it. Reflecting back on all these incidents I should have pushed more. I should have talked about them more. Maybe someone would have pushed me if I took the time to let someone into my world of pain. But I never wanted to be one of those people that complained all the time so I just kept in. I just kept working through the pain thinking that this round of allergy medicine would do the trick. I had my little headache cocktail if you will that took the edge off. It was one Zyrtec D and two Excedrin. Everyday the same thing. And if I didn't take a ZyrtecI thought my head would explode. I needed them. But in the end I didn't need them, I just need a doctor who knew what he was doing. One who listened and wanted to get the root of the problem rather than masking the symptoms. I swear I will never go to a normal doctor again, I will always go to a specialist. This whole experience has tought me so much already. I look forward to what things I will learn after my surgery. One more day.
I can do this. I will do this and I will be ok.
Friday, February 3, 2012
13 Again
So tonight rather than having a brain tumor and focusing on that I became 13 again. A time where nothing matter but being with your best friend, eating junk and watching the best movies ever made. Pushing through my headache tonight was easy with the night that I had planned. I have been looking forward to this day all week and it was everything and more for me.
We started our night with Cheetos, pizza, and cookies. A 13 year old dream. The first movie was Grease. My all time favorite. Not to worry everyone I still the whole movie word for word and dance for dance. The best part is my best friend didn't mind that I sang every single song like it was my job. Those of you that have heard me sing...well let's just say its not pretty. But she didn't mind at all and even joined in. The hand jive was even part of my fun tonight. After falling back in love with Grease I want to have a theme party. But after the other movies I might want a Dirty Dancing party. Who knows. I will change my mind a hundred times before I actually do anything. Now we sit here watching Dirty Dancing. Could my night get any better. Yes it can. Footloose is next. Best movie night ever. If we had Sixteen Candles that would be on deck too. I couldn't be happier right now. The only thing that could make this better would be no headache but that will come soon enough. 2 more days....
I can do this. I will do this and I will be ok.
Thursday, February 2, 2012
Pre-Op Day
Pre-Op day was pretty fantastic to say the least. I have gotten so comfortable with my condition now I can openly say yes I have a large brain tumor and voice doesn't tremble. I love that. It's there and and I am one day closer to it going away. My day starts super early as usual because I can't sleep. That along with weight I have gained is due to the steroids. I general fall asleep around 1 and wake up about 4. To say the least it's exhausting. So I get up and eat because the steroids make me so hungry. I hate it. I can't wait to be done with that part. I know it will be fine because I won't be able to eat for a bit after the surgery but 20 pounds. Really?!?!?! It's really not fair but I'm dealing. Or at least the best I can as eat just one piece of something. I know I know it will all be over soon but I still hate it. So aside from that because I really could go on forever about that, the steroids do help my head and give me some peace sometimes so it is worth it. I have found that my coffee helps as well. I don't know how but it's almost like a little cup of magic for me. So now that I'm up at four I drink my coffee and lay in bed and hope that I will fall back asleep even if just for an hour. I would love that but that never happens, must be all the coffee I drink now.
So my day today. Amazing. First the hospital is so great. I don't have to wait ever. I have never been to a doctor who doesn't make you wait. I think they are just that good, it can't be because of my large tumor. Or maybe. But either way the no waiting I will take. My first appointment of the day was another MRI. Great my fav. I just love laying in a tube that sounds like a truck in running over it for an hour. But this is THE MRI. The one that said is going to be the GPS to the tumor. It's crazy to me that they will navigate in my brain with an tiny tool and a photograph. To have that talent is unreal. I can barely find my way out of a paper bag let alone navigate from a picture. I get the MRI, not too bad, they inject me with dye and leave a bruise. I'm a little tired of all the bruising as well. They are every where. Due to not being able to balance all the time they are on my legs and arms and now on the inside of my arms. Hopefully that will go away soon too. Then after I'm done with my MRI today I have to go sign a few papers and get asked the same questions again. They all ask the same questions and they all right down the same answers so I really don't understand why they don't share that information with each other. It just seems pointless to me. Maybe moving forward I will make my form and just give to each new person, it might be more efficient that way. So I meet my nurse practitioner today. My new best friend. I love him. He told me today that I am allowed to take a Tylenol PM!!!!! That was music to my ear. It makes me so happy. I might actually get more than 4-5 hours of sleep tonight. I hope it works. I only took one because that's what he told me to take and I'm not going to mess around with anything this close to the big day. Then he asked me what I thought was the silly question I have ever heard. He asked if needed would I accept blood. I looked at him and I said " so what you are really asking me is do I want to live or die?" he looked back at me said you would be surprised to hear that people won't accept it. I said please check yes to that box I plan on living for a very long time even if takes someones blood. The chances of me needing blood are slim to none but don't worry I checked that yes box. So after all that was said and done I had to go over to Tampa General to start their pre-op items. You guessed it the same questions I just answered from USF, and Radiology. But like I said I'm getting much better about talking about it. They gave me all my supplies for the day before the surgery and started with the tests. These ones weren't too bad. I got to talk about being put to sleep. It makes me very nervous because I have such a hard time sleeping under normal conditions let alone someone cutting open my head. She assured me that I wouldn't wake up and that I had a better chance of winning the lotto two weeks in a row. That made me feel a little bit better. Then it was off to get more blood taken. But this nurse was awesome and didn't leave a bruise at all. you can barely see the hole. Then a chest x-ray and then I was done. It was so easy. The day went by so fast. It was only from 8-12. I really expected a lot longer but they like to get you in and get you on with your day. It wasn't a rush thing it was more of being respectful of your time thing. It makes me feel so good about my decision to go to Tampa. And then on the way out we bumped into my Dr and we were able to chat for a few minutes. I know it's going to sound crazy but I really want him the video it so I can watch it later. It's something I would really like to see. So keep your fingers crossed that he will say yes to that. My surgery will be at Tampa General on Monday February 6th and I have to say my fear is going away about it. I have accepted it this week. I am going to have major brain surgery and I will be fine. Oh I forgot to mention, the thing that made me the happiest today was that I got a follow up appointment to put on my calender! I will be ok. The doctors know it, I know it and my support system knows it! Just a short 10 days after my surgery is my follow up. How amazing is that?!?!? Today has been so great all day. There are so many things that made my day wonderful but the two most important are the follow up appointment and the Tylenol PM. We will see what tomorrow brings me but I'm on such a super positive high tonight I have a feeling it's just going to carry over until the surgery. I can't say things are going my way but it looks like they might start.
So my day today. Amazing. First the hospital is so great. I don't have to wait ever. I have never been to a doctor who doesn't make you wait. I think they are just that good, it can't be because of my large tumor. Or maybe. But either way the no waiting I will take. My first appointment of the day was another MRI. Great my fav. I just love laying in a tube that sounds like a truck in running over it for an hour. But this is THE MRI. The one that said is going to be the GPS to the tumor. It's crazy to me that they will navigate in my brain with an tiny tool and a photograph. To have that talent is unreal. I can barely find my way out of a paper bag let alone navigate from a picture. I get the MRI, not too bad, they inject me with dye and leave a bruise. I'm a little tired of all the bruising as well. They are every where. Due to not being able to balance all the time they are on my legs and arms and now on the inside of my arms. Hopefully that will go away soon too. Then after I'm done with my MRI today I have to go sign a few papers and get asked the same questions again. They all ask the same questions and they all right down the same answers so I really don't understand why they don't share that information with each other. It just seems pointless to me. Maybe moving forward I will make my form and just give to each new person, it might be more efficient that way. So I meet my nurse practitioner today. My new best friend. I love him. He told me today that I am allowed to take a Tylenol PM!!!!! That was music to my ear. It makes me so happy. I might actually get more than 4-5 hours of sleep tonight. I hope it works. I only took one because that's what he told me to take and I'm not going to mess around with anything this close to the big day. Then he asked me what I thought was the silly question I have ever heard. He asked if needed would I accept blood. I looked at him and I said " so what you are really asking me is do I want to live or die?" he looked back at me said you would be surprised to hear that people won't accept it. I said please check yes to that box I plan on living for a very long time even if takes someones blood. The chances of me needing blood are slim to none but don't worry I checked that yes box. So after all that was said and done I had to go over to Tampa General to start their pre-op items. You guessed it the same questions I just answered from USF, and Radiology. But like I said I'm getting much better about talking about it. They gave me all my supplies for the day before the surgery and started with the tests. These ones weren't too bad. I got to talk about being put to sleep. It makes me very nervous because I have such a hard time sleeping under normal conditions let alone someone cutting open my head. She assured me that I wouldn't wake up and that I had a better chance of winning the lotto two weeks in a row. That made me feel a little bit better. Then it was off to get more blood taken. But this nurse was awesome and didn't leave a bruise at all. you can barely see the hole. Then a chest x-ray and then I was done. It was so easy. The day went by so fast. It was only from 8-12. I really expected a lot longer but they like to get you in and get you on with your day. It wasn't a rush thing it was more of being respectful of your time thing. It makes me feel so good about my decision to go to Tampa. And then on the way out we bumped into my Dr and we were able to chat for a few minutes. I know it's going to sound crazy but I really want him the video it so I can watch it later. It's something I would really like to see. So keep your fingers crossed that he will say yes to that. My surgery will be at Tampa General on Monday February 6th and I have to say my fear is going away about it. I have accepted it this week. I am going to have major brain surgery and I will be fine. Oh I forgot to mention, the thing that made me the happiest today was that I got a follow up appointment to put on my calender! I will be ok. The doctors know it, I know it and my support system knows it! Just a short 10 days after my surgery is my follow up. How amazing is that?!?!? Today has been so great all day. There are so many things that made my day wonderful but the two most important are the follow up appointment and the Tylenol PM. We will see what tomorrow brings me but I'm on such a super positive high tonight I have a feeling it's just going to carry over until the surgery. I can't say things are going my way but it looks like they might start.
Wednesday, February 1, 2012
My Support System
Oh my crazy week. I'm doing such a good job about staying on schedule. The only problem with that is I failed to schedule down time. I should have thought this out a little bit more but oh well. I guess I will have plenty of down time in very near future. And by very near I mean 4 days. Yes that is right my friends we have an official countdown. 4 days....
I have learned a few things these past few weeks. The most important thing I have learned is about my support system. I would never expect anything from anybody but oh my goodness the love people share for me is amazing. Everyday I am touched by something someone said, did, sent me or just there overall happiness to be around me. My family, friends, and work family surprise me everyday. EVERYDAY! They are all so great to me. How did I get so lucky. I know my situation can be a little much to handle but everyone has been so great to me every step of the way. It hasn't been easy and I know that but even when I'm having a moment and I deserve a slap in the face I get back support. It's nice to have that. I don't know what I would do if I didn't have that. My support system is the reason I don't cry everyday. Don't get me wrong I have those moments and people see them and hear them but there could be a lot more and there's not. That's not me that my group keeping me strong. They are the reason I know things will be ok. They have faith in me and who I am. Even when I question if I'm ever going to be the same they remind me of who I am at the core and that will never change. Hearing that makes me feel wonderful. Because that is something I worry about. Change. I mean who really likes change. So one of my biggest fears is that my surgery is going to change who I am. But I'm lucky enough to have my group tell me that it won't. I believe them. I have faith that they are telling me the truth and they wouldn't steer me in the wrong direction. I am truly the luckiest girl alive right now. I the best group of people surrounding me right. I could go on forever about how grateful I am to have all these wonderful people in my life. Like I said before I surprised everyday by someones kind words or their actions. It has tough me to faith in people again. I lost that a little bit where I wasn't sure if others even cared about anyone else but themselves. I was wrong on that. People do care and there is good out in this world. You just have to surround yourself with people like that and I have.
Tomorrow is a big day for me. I know I've got the love to get through but I hope that I don't lose my temper with my day. I hope I don't have an anxiety attack and I hope that I can remember to stay level headed all day. Tomorrow is the pre-op day. Lots of poking, testing, staying still and question answering to multiple doctors. Not easy for me. But they are there to help and make sure that my surgery is successful. So I will be nice and drugged .
4 Days.......
I have learned a few things these past few weeks. The most important thing I have learned is about my support system. I would never expect anything from anybody but oh my goodness the love people share for me is amazing. Everyday I am touched by something someone said, did, sent me or just there overall happiness to be around me. My family, friends, and work family surprise me everyday. EVERYDAY! They are all so great to me. How did I get so lucky. I know my situation can be a little much to handle but everyone has been so great to me every step of the way. It hasn't been easy and I know that but even when I'm having a moment and I deserve a slap in the face I get back support. It's nice to have that. I don't know what I would do if I didn't have that. My support system is the reason I don't cry everyday. Don't get me wrong I have those moments and people see them and hear them but there could be a lot more and there's not. That's not me that my group keeping me strong. They are the reason I know things will be ok. They have faith in me and who I am. Even when I question if I'm ever going to be the same they remind me of who I am at the core and that will never change. Hearing that makes me feel wonderful. Because that is something I worry about. Change. I mean who really likes change. So one of my biggest fears is that my surgery is going to change who I am. But I'm lucky enough to have my group tell me that it won't. I believe them. I have faith that they are telling me the truth and they wouldn't steer me in the wrong direction. I am truly the luckiest girl alive right now. I the best group of people surrounding me right. I could go on forever about how grateful I am to have all these wonderful people in my life. Like I said before I surprised everyday by someones kind words or their actions. It has tough me to faith in people again. I lost that a little bit where I wasn't sure if others even cared about anyone else but themselves. I was wrong on that. People do care and there is good out in this world. You just have to surround yourself with people like that and I have.
Tomorrow is a big day for me. I know I've got the love to get through but I hope that I don't lose my temper with my day. I hope I don't have an anxiety attack and I hope that I can remember to stay level headed all day. Tomorrow is the pre-op day. Lots of poking, testing, staying still and question answering to multiple doctors. Not easy for me. But they are there to help and make sure that my surgery is successful. So I will be nice and drugged .
4 Days.......
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