Saturday, August 23, 2008

Amazing Thoughts!

As I sit here I can't help but think about the fact that it's less than 48 hours to surgery. The thoughts that are going through my head are...
1. Sitting on a porch swing watching my "Grandkids" play in the yard
2. How should I decorate the house for Christmas
3. If the landlord decides to sell this house to us how would I change things a bit....this is fun for me.....
4. How many happy people are coming over tonight!!!

Tonight is our Pre-Tumor removal Party. I want to be surrounded by happy go lucky people with positive thoughts and just have fun. We are going to BBQ and hang out and tell jokes and laugh.... I can't wait. We are so happy to be in this house and blessed that we all love it as much as we do. I am still in shock that we are here. We love everything about it. It feels like home. Our home.
I can't wait till Christmas when we can put up lights outside and decorations. The boys will get to help and I've already decided on colorful big lights. I want the Christmas tree in the family room in front of the slider and then maybe some animated deer in the front lawn.
Next summer I'm already planning, in my head, BBQ's and birthday parties. Matthew wants his birthday party here this year. I will make that happen. So much to look forward to and shoot for.
So my amazing thoughts that keep me going.....My husband, kids, family, friends.... Who could ask for anything more. I have a life that I could never imagined. I am so blessed.
Tomorrow we pick my aunt up from the airport. She is flying in from Michigan to help me out and be there for me. We have had a special relationship since I was born. I've always been Susie's girl. She taught me all about unconditional love and how to follow my hopes and dreams. She also taught me to look at the good in people but not to take any crap from anyone. She was a huge advocate on me mending my relationship with my mom and that was the best thing that could have ever happened to me. She will be here to help us all out. Her strength will help Derek and my brothers and they in turn will be able to help her.
My cold is almost gone so I don't foresee pushing out surgery. Everything is a go and then it's just healing from there. I can't wait to come home from the hospital and sit in my moms chair by the window and relax. They said they are going to wean me off the Steroids before they send me home...YIPPPPEEEE..... I shouldn't be on any other meds for anything other than pain at that point. This is a good thing.
The next steps include Gamma Knife...for the residual and possibly another surgery or two. First things first....Survive Brain surgery....The first thing on my to do list. I will do this. I will come home and I will be 100%. This is my goal. I have asked all of my friends and family to keep me motivated and going. I have friends who want to take me walking and I think that's great.
Lots to look forward to. This is what keeps me going. Keeps me moving forward one step at a time.

Friday, August 22, 2008


Well, if brain tumors and moving wasn't enough stress then throw in the family explosion.... Last night was a huge eye opener for me. The kids and Derek and me just lost it. Yelling and crying and whoa!!! I couldn't stop it. It was like a freight train that just plowed into us. One minute we were eating cake and laughing and the next minute it was world war three complete with atom bombs.
We did diffuse it and had a really good talk. The boys are really stressed right now and I'm thinking counseling is going to be a good thing. Now, Derek is really stressed. He has taken on so much and all I really want to know is how he is feeling. I want him to talk to me. Let me know his fears. I don't want him to take this all on himself. We are still a team and I love him so much. I saw a part of him yesterday that I have never seen before. I just don't want him to bottle all of this up and not have anyone to talk to. I am trying to get a hold of his mom to see if she can try to talk to him a bit. I also told my brother to take him aside and help him out. I think Derek just doesn't want to stress me out any. I love him for that but I can't stand to see him bottle this up and not open up to me. I still want to be there for him and the boys in every way. That's my job. That's who I am.
Surgery is 3 days away and my cold is getting better. My throat doesn't hurt anymore and all I have is a cough. The hospital called me yesterday and registered me then told me that I need to pay them $500.00 for the deductible and they wanted it right then. I explained it to her that payday was the day after surgery and I would talk to my doctor about it. I don't think he'll postpone surgery because of that. My cold on the other hand he will. I have to call him on Sunday to let him know how I am feeling. Lots of fluids and Vitamin C is what I am doing. Seems to be working.
Matty and Timmy are doing good. I feel so bad for them because as much as they try to understand what is going on they really don't. Matty cries and that's how he deals with everything. Timmy acts out and takes it out on his brother. I don't know what to do but just love them and hold them. Matty doesn't want to leave my side and Timmy just doesn't know which way is up. They are going to their dads on Sunday so I hope it will give them a break from all of this stress. I know it's a lot to take for us adults but I can't imagine how they must be feeling. I wrote them letters this morning for their first day of school. This will be the first one that I won't be there. They are starting a new school and meeting new friends and have a new home and so many changes. Throw in that their mom is having major brain surgery and WOW too much for such young kids to take.
They are strong boys though. I am truly blessed to have them. I couldn't have asked or wished for better children. I just wish that I could protect them from all of this. As a mother we never want our children to see us like this. We don't want them to see us in pain or crying and we don't want them to see us with staples in our heads. We have prepared them but given them the option to be here or at their dads. They can make the choice.
Today I am going over to my old apartment to do the final walk through. They will probably charge me 400.00 for move out damages and I'm OK with that because I couldn't clean the apartment. We turn in the keys and close that chapter of our lives. Kind of sad really. It was a big deal for us to move into that place and now we have a house. We are moving up in the world. All of our dreams and wishes are going to come true one step at a time.
I still have my to do list and look at it often.

Number one is and will be: SURVIVE BRAIN SURGERY NEXT MONDAY

Just so everyone knows, Keep me positive....Don't let me look back.....Keep me moving forward.... I am going to need help from everyone on this..... I can't let this get me down.... I can only let it move me forward.

Thursday, August 21, 2008

Word Vomet

So, yes it falls from your tongue and it doesn't stop. At least it doesn't from mine. I guess with all that is going on in my life I feel that if I have something to say I just say it.
My brother Kevin came by last night and saw the new house. He hung out for so long and it was nice. I am trying to surround myself with positivity and it's hard because I think that I did something to a friend (I think I know what it was) not to hurt her or make her mad but I did it. Word vomit. I was pissed off at my situation and took it out on someone else....Not cool! Not right. I hope she forgives me.
Right now my nerves are shot. 4 days to surgery. I will be recovering this time next week. I have so many fears and yet I have so many wants. I'm trying to stay busy and keep moving which isn't hard considering all that we have to do to get this house in order. I need to put clothes away today and try to get pictures on the walls. I have people coming over on Saturday and I want at least a pathway through the house. I just don't know what to do first.
My niece Kayla spent the night last night and is sleeping in my moms chair. She is so cute and her smile brightens the room. She loves to help me out and keeps me motivated to keep moving. Derek is on a mission to fix everything and anything he can in this house. He installed ceiling fans and light fixtures and fixed the garage door. He even fixed my mom's chair so the leg won't fall off. I think his nerves are setting in too. If he keeps moving then there's no time to think too much about everything else. I know all about that.
They are going to either cut an 18" incision that wraps around my ear or two 8" and one 4" incision depending on what happens and the best plan when they get in there. They are only shaving strips of my hair so a comb over is what I will have when it's done. Not a problem. My hair grows fast and there's a lot of it.
My friends and family are being great right now. Everyone is jumping in and helping us out with everything. I have a guarding angel who's words and voice over the phone calm me and put me back in a good place. He knows who he is and will always be my family. He is in our hearts everyday. Pay if Forward is his motto and should be everyone elses. He called yesterday and right at a perfect time. I was on the verge of crying again and he just calmed me down. He reminded me that, YES I CAN DO THIS! Yes I can. We all need a good kick in the ass from time to time to remind us that everything is possible.
I will continue to write. I hope that everything goes smoothly and that I'm able to be back home soon and recover.

Wednesday, August 20, 2008

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?

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....

Thursday, August 14, 2008

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....

Wednesday, August 13, 2008

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 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!!!

Monday, August 11, 2008

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.

Sunday, August 10, 2008

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....

Saturday, August 9, 2008


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 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.

Friday, August 8, 2008

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

Tuesday, August 5, 2008

Still Waiting!

I seem to be playing the waiting game a lot lately. I'm OK with it except that I am running out of things to do. I have cleaned and organized and just about done everything that a person can do. Today I am whooped.
Derek came home yesterday and he is so stressed out. He has taken on the roll of everything. When he first got home I felt like he didn't even want to be around me. He was staying busy and not even looking at me. I was scared that this was too much for him to bare. He cleaned the fish tank and took Roxy to the Groomers. Usually all he wants to do is relax after being on the road for so long. I finally lost it and started crying (still really easy to do given all the meds) and told him that he needed to let me know what was going on....
He has the weight of the world on his shoulders. He is now the "sole" provider for our family. He is responsible for everything. Who is going to take care of him. This has been my worry the whole time. I don't want this for him. I know he loves me and the boys and I know that he does this unselfishly just because he does love us. But, who is going to help him out with all of this?
You know, when it comes down to it....I can make it through surgery and I can recover. My worries always fall back to Derek and the boys. I want so bad for this to go away so that they don't have to worry about it. Matty is up and down and doesn't know what to think. He gives me so many hugs and doesn't really want to leave my side. Timmy is doing a 180 and being so helpful and lovable. He hasn't mentioned once to go play outside or to go to his dads. I think they are really scared. All I want is to take this burden off of them. To show them that God has a plan for me and he's not ready for me to be done yet. I have a long road ahead of me but I will make it....we will make it together and be stronger because of it.
So, today I am hoping to get a call from my NS to see about a possible surgery date or another appointment with him. I am also hoping that they at least push it out a couple of weeks. I am praying for good answers and a strong team of docs to help me with my journey. I am also doing research on holistic medicine for the rest of my tumors and for the continuing disease. I will make it through and when I do I will write a book.
Not everyone understands how much something traumatic and life changing like this can affect everyone around you. It's not just the tumors in my head, it's my boys and my husband, and my family. I can't make it go away but my family will always be there. We have been through so much already and have proven ourselves strong. We will always be there for each other no matter what. My family extends from coast to coast and I'm hoping to get everyone here for my recovery....that's me being selfish....yeah it shows from time to time. I want my boys to help me decorate a piece of poster board for people to sign who visit. My nieces are in charge of artwork for the walls and Derek is in charge of hugs and kisses...If I don't look to gross!! Just kidding.

To Do List:
1. Survive Brain Surgery
2. Vacation More with my family
3. Watch the Sunrise and Set
4. Own my Own house
5. Own my own business
6. Watch my kids graduate
7. Play with my grand kids
8. Spend more time with my husband
9. Hike, Camp, and Have more fun with Nature
10. Give back Volunteer
11. Go cross country with Derek
12. Re-new our vows on the beach in Hawaii barefoot
13. Visit a nude beach in Brazil
14. Re-type or add to this list everyday!!!
15. Go back to school

Although my list will never end and I will change it all the time I do plan on doing as much of it as I can. Add this one to the other one and I will add both to the next one I type......

Friday, August 1, 2008

Game Plan Changed

I've been amazingly calm which is really weird for me. I'm the freak out queen. I do have a million thoughts going through my head but not sure what to think about them yet. The steroids keep me from sleeping and cause me to be emotional both sad and angry....moody to say the least.

My changed game plan is that I'm sticking with my Neurosurgeon Dr. Antezana. He is conferring with two colleagues about the best way to attack and evict my unwanted tumors. They are growing and causing problems and I need to take care of this soon. I like the fact that he is working so diligently to correct this and provide me with the very best care available. His words not mine. He is going to make sure that I am taken care of and receive the best medical treatment possible. I like that idea.

I am still worried about my boys and their reaction to this whole situation. I don't think it's going to be real for them until it actually happens. I am also worried about Derek. He is trying to be so strong. He is my rock. Who is going to be there for him to help him through this emotional roller coaster. He wants me to concentrate only on getting better. He wants me to only worry about me. I know he means well. I am who I am and I am worried about everyone else as well as me.

Everything is going to be OK. I have a lot to learn about life and this whole crazy path I am on. Jesus has taken the wheel at this point and my mom is giving me strength. My hands are in the air and life is giving me a second chance to excel. To explore all that it has to offer. To live, love, laugh and everything in between. I will smell the flowers and play tag with my boys again. I will enjoy the sunrises and sunsets and listen to the ocean again. I will learn all that I can and maybe write a book when I'm done. Heck, maybe I'll go back to school and become a medical assistant to a Neurosurgeon. It could happen. I can make that happen. I'm being given a second chance to live this life I have and I'm going to live it to the fullest.

Good News!!!! My hubby is home in 3 days!!!!! :)