Surgery Date

My surgery is set for Monday August 25th at 6:15am. I had my Pre-Op appointment today and I'm just a bit overwhelmed. I mean this is something that can make me def and cause paralysis and loss of speech. This can also kill me if I don't take care of it. He talked about 18" incisions and stints to relieve pressure and catheters and ICU. He told me I'd feel like a got into a fight with a MAC truck and won. I kinda laughed at that part.
My brother gave me the biggest hug and I could just tell that everything is going to be OK. He is so strong. So, why am I so scared? Why the HELL does this have to happen to me and my family? What did we do to deserve this? What does anyone do to deserve this?
Whatever!!!!!

OK so I'm done I think. I'm just so emotionally gone right now. I really don't know which way is up and I'm not even sure how to walk or talk. I keep saying the wrong things and I don't mean to. I really just want to say that I am going to make it through. I know it's going to be hard but this isn't going to stop me. Throw another mountain in my way and I will conquer it. My flag will be at the top saying "Kiss my ass is this all you've got?"

My Mom is with me. I felt her today. I know how she felt when she was going through everything she went through. I had a feeling for a split second of hopelessness and then like an instant she was there holding me. That which doesn't kill us only makes us stronger.... I'm Fricken Superwoman....don't you forget it....

New Home!!!!

With everything going on we had the added stress of finding a new home and coming up with the money to move. Not to mention packing and planning my surgery and Derek is working full time local. I let this stress get the better of me and not sure why other than I just didn't want anymore change in my life.
The positive things that I have learned in the last two days:
1. My boys are amazingly strong and supportive
2. Derek is my ROCK and my Night in Shining Armor
3. Our new place is Quiet and peaceful
4. Moving keeps your mind pre-occupied so you don't have time to dwell on things like surgery
5. When one door Closes another door Opens
6. Family and Friends are amazing


Our new place has a full bath in the master bedroom and a walk through closet. Wow! we haven't been able to use a closet for three years. It has been fully renovated and has a larger fridge than we have now. It has the dark cabinet I love. Lots of windows and overlooks the woods. We are loosing space in the boys' room but we are going to make due by putting their beds back to bunks. We won't have time to paint so we are going to get posters for them to put on the walls. I will have a separate laundry room with a side by side washer and dryer..... That will be easy to get used to. I'm excited and nervous but all in all I think this move was meant to be. We will be able to move on Saturday and Sunday and then I will clean this place on Monday and have the Carpets done on Tuesday. One of the perks is that I think they will clean the carpets for free. They will replace them anyways but I don't want to get charged for them.

My hubby is absolutely amazing. Under all of this stress and discomfort he has risen to the top and found the door open on the other side. We might have the option in a year or so to rent a house from one of his bosses. It's in the area that we all love and want to live in and it's the exact size and look and everything we've ever wanted. This is a temporary move for us but we are not in a hurry to move again. Main goal is for me to recover and get better.

I do want to recover quickly and get back to work so that we can get back on top. I called the SS office yesterday to see what my options were and they weren't so helpful. Seems that regardless of your situation you need to be determined disabled....which I am, and then go see their doctors for a second opinion. Hmmmm ok. Then you have to be denied because of your age and then get a lawyer to fight for you. Again, Hmmmmm.... She also told me that with Dereks income I wouldn't qualify for the money but if approved I could qualify for the medical. That would help but again a waiting list. I'll just concentrate on getting better and if I need to I'll get retrained into doing something else that I can do. I will work with my disabilities...
The power of positive thinking goes a long way and I'm going to stay as positive as possible. Spring cleaning in my brain and in my house. This is a fresh start for my entire family. A quiet place to recoup and I'm still close to everyone.....Who could ask for anything more....

Oh one more thing..... My Pre-Op appointment is set for next Wednesday at 9am and then Surgery to be 28-31 on one of those days. Just thought I would share....

What Now???

Well, when it rains it pours. I'm trying to stay strong and I'm trying to keep going but it just seems as if I'm banging my head into a brick wall. That which doesn't kill us only makes us stronger???? If that's the case I have a whole family of the strongest superheros ever.
As if Matthews kidney stones and 4 surgeries weren't enough...no we had to throw in a whole bunch of brain tumors and a big long disease for me. You can call me Neurofibromatosis Type 2 Mom!!!! Up Up and Away!!!
But seriously.... With all of this stress and a pending major surgery in two weeks we now found out that we need to move or take on a $400.00 rent increase. What the heck???? As if Derek doesn't have enough on his plate working hard labor just to stay local and take care of me and the boys and still pay the bills. We'll just throw in moving to a new home. Not to mention finding the home and then actually coming up with the money for the home. The place we found is smaller and more expensive. What Now???
I'm trying to stay positive. Don't get me wrong. I keep thinking about the good things about the new place and the fact that it has full size Washer and Dryer and not a stackable. We need help. I hate asking and taking and boy when I'm better I want to make it my mission to be able to help out families in need just like us.
My kids...... It's been rough on them to deal with all of the things going on with their mom. Now, they get to move and go to a new school and I just think it's too much change. I see our youngest rebelling. Our oldest is overly emotional and this is just the beginning.
I'm going to write to the newspapers and stations again today. I hope someone answers and helps to give us some hope.
Wish me luck!!!

I wrote to my local News Channel

I'm not sure why other than I'm scared and I don't like that no one really knows what this is. Yes, I have brain tumors! Yes, I have Neurofibromatosis Type 2! Yes, I am a mom...desperate to continue helping her family to grow.
I feel like I need to do something to help ease the burden now placed in Derek's hands. He is taking on so much and I don't want him to feel alone. I'm so worried about him and the boys. Derek is working local today to make some extra money. With me not working the bills are piling up and no means to pay all of them. We, in one day, lost half our income. Crap!!!! I feel like it's all my fault but I know it's not. I didn't ask for this. No one asks for a brain tumor...let alone a bunch of them. If I could only find a way to make money without hurting myself or straining myself too much. The main reason they took me off work was because of my new found balance issues and my slight hearing loss. I was also experiencing bouts of fatigue that were debilitating to say the least. I have trouble forming my words and it just sucks...OK pity party OVER!!!
After surgery I will recover and everything will be fine. It's just the waiting game for now. I'm not sure where to turn or who to talk to to help us out with the immediate problems. We are receiving help from friends and family, don't get me wrong. I am very appreciative of everything that people are doing for us and plan on paying it forward as this is and will always be my motto in life. I think that's why I contacted the News.
I want there to be awareness on this side of the country. I want there to be help for people who are going through this like my family. What about the single mom who is the sole support for her kids and gets diagnosed. Who does she turn to for help? What about the family who struggles just to make ends meet and then loses everything because of a diagnosis on a single day. One day, one moment, one second, can change your life forever.
Now, it may seem like I am dwelling on all of this but really I think I'm finding a higher purpose to my life. A fresh, new start to do something to help others. I really want to help others. I want to help pave the road for the next person in my shoes.
I wonder if we could get a celebrity spokes person to help us raise awareness and money to help find a cure and financial aid for families in need.
As of today....The medical bills equal the cost of a small house. This is after the insurance paid their part. Scary stuff. I will keep trying and keep moving forward as this is my mission. I will strive to raise awareness for the West Coast Meningioma Project. Not sure how but it all starts with one voice.

Never Ending Tasks

It's 5:32am and I know that everyone is sleeping which is what I should be doing. I did sleep better last night. The fist stint was from 9:30 t0 12:30 and then I took some Tylenol pm. I then slept until 4:45 and decided that it was time to wake up. I' feeling pretty good about getting more than 2 hours of sleep.
The meds have me so messed up right now. I'm on steroids and Topomax. Then to counteract the effects of them I'm on Tums and Miralax and lots of water and Tylenol PM. What fun.... I guess I should be happy that the Pharmacist knows me by name now and is willing to answer all of my questions. He flagged my account up there to help explain to everyone who picks up my meds any interactions and instructions that go along with them. I love Rite Aid. They also signed me up for the rewards program and are giving me the senior discount all the time..... I guess when you tell someone you have brain tumors they feel for you, or they know how expensive it's going to be.
Yesterday Derek took me up to shoot my new gun. Yes I have a gun and I absolutely love it. I wore my protective ear wear and I was shooting like a pro. I pretended that I lined up each tumor on the fender we were shooting at. One by one I knocked them out. What a great stress reliever.
Today's plan for me is to try to get my house in order again. We have been cooking a lot of good food and eating a ton. I don't think I need to eat for a week. I think we have dirtied every dish in the house. We have been running two to three loads a day. I also want to get the boys room in order because we are going to turn their beds back into bunk beds. We need to give them some more room in there. I'm hoping to be able to put a desk in there so they can start doing their homework and such in there. Matty love to draw and that would be fun for him as well.
After all of that it's just the norm....laundry and clean the bathrooms....
Should keep me pretty busy... I hope. Of coarse I will probably also nap in there and rest a bit too....

Reactions

The day is coming and I'm starting to get nervous. I know I'm tough and I think I'm just overly tired right now but I have a million thoughts going through my head. I hope I can find some peace with this soon. I think I will call the on call doc and see about getting something to help me sleep. I know that will help my mood some.
Peaceful meditation sounds wonderful to me. I think about the sounds of the ocean or a trickling stream and it does relax me. I'm trying to breath deep every time my heart starts racing. Derek went for a short walk with me last night and yesterday he pushed me a little to keep me busy. We washed, waxed and cleaned out the car. This usually wouldn't be a big deal except we own a lifted Sequoia and it's huge. I was pooped by the time we were done. After that I had to take my Steroid again and you guessed it......energy all over again.
Nothing worse than the feeling of having inner energy when your body is telling you NO!
The boys are with their dad this weekend and I am missing them like crazy. I wonder what they are really thinking about all of this. I am hoping that it doesn't make them grow up too fast. We are working on gathering school supplies and clothes and getting them ready for the first day. This will be the first year that I won't take them to the first day of school. I want someone to take pictures. I am truly blessed to have such wonderful children. They are my world and help to keep me young. I am going to try to take a picture into the operating room with me just for my own sake.
My thoughts on this whole thing.... I don't want a long dragged out recovery. I want to heal fast and good. I want to be better than new. I will do the best I can to make this happen. I don't want to be a burden on anyone but my support system is incredible. I have a wonderful husband who is putting up with my mood swings right now and a fabulous family who is going to come visit in shifts to help take care of me. My oldest brother said that he could work his vacations around it as well. Maybe I could recover at his house for a while for a change of scenery.... I really don't want to be stuck in this house day in and day out only to leave to see the docs....
OK, so the rambling we can chalk up to the Steroids. This is what they do. My thoughts are scrambled and jumbled but if I don't get them down they scramble my head. This is all a part of the journey I am on.
I didn't chose this Journey it just showed up one day. I had a choice to freak out, lay down and die or fight it. Guess what? I'm a fighter. I will not take this as the end but as a new beginning for me and my family. The sky is the limit and this is just another speed bump or maybe a triple hurdle for me to cross. I may have flat tires or broken legs but I will make it over the humps.

Tweaking across the USA!!!!!

OK! So, I'm not traveling across the USA yet but I feel like it. These damn steroids have me up and down and every which way. I can't seem to say or do anything right. I'm surprised Derek is still here. He is putting up with my "Dr. Jekyll and Mr. Hyde" routine that I can't even control. I'm in here somewhere but just can't find me. I need some Xanex now.....
I was trying to talk with my family last night and couldn't even do that. I would never make a good drug addict. I don't see why anyone would ever want to feel this way on purpose. This is absolutely ridiculous. I'm shaky and nervous. I can't sleep amongst other things. No one wants to be around me, not even my kids. I cry and yell and snap and the drop of a dime. What the HELL!!!!!
I'm trying to release because I need to find a way to get this to slow down. I know I don't feel comfortable walking by myself but today I have to. I am going to walk till my legs won't move anymore. I am going to try to get all of this extra energy out of my system and hopefully get myself better before I get to go out this weekend. Derek, Scot, Laura and a couple of other people said we get to go to Edgefield for drinks. Now, I don't care for drinking anyways I just want to go hang out and have some fun. Get out of the house and try to relax and let lose.
I know this one is a ramble. It's my Steroid Jumble....I could invent a new dance on this one.
Surgery is being scheduled for the end of the month and recovery shortly after that if I have anything to say about it. They want to do one more scan before they do the surgery so they might be taking out 5 tumors instead of 4. More spring cleaning.....
My Prayer for today:
God give me strength to curb this over activeness that I am feeling from the meds. Help my moods and help me to find peace in this situation. Please help give Derek strength as he has everything on his shoulders now. Help him to ignore my attacks as they aren't me and help me not to attack him. Give my family the strength and courage to be strong and positive through all of this and to help me stay the same. A-men