Brain Tumor Journey

Well isn't that nice...

2010-02-05T15:56:00.000-08:00

I think I finally crashed today. I cried harder than I have in a long time. I just feel like there's no fight left. I don't have the energy to fight it anymore. If this world wants to be rid of me so badly that it's gone out of its way to make my life hell than have at me. Take me.... I'm done!!!!
My boys don't deserve this and my husband deserves to be happy and not have to work his ass off to support us all the time.
I get it... This life wasn't meant for me. But it was meant for my boys and they deserve the best that this life has to offer. They don't deserve to lose their mom or their home or their lives because of this.
Right now we have hardly any food in the house. We are down to our last roll of toilet paper. Why am I such a failure? I tried to be a good person all the time. To donate when we could and sometimes when we couldn't. I smile and say hi to the lonely people walking by. I try to live my life with my mom in mind. What would she do? How would she handle things and what comes back to me is HOW?
How did she go through all that she went through and still manage to smile that infectious smile? How did she manage to get out of bed everyday and put on the courage mask? Where is that mask now? I need it.
The days ahead of us are pretty blurry now. I'm not quite sure what is going to happen. I pray we can stay in this house, our home. I pray that things turn around for us. I pray that my smile returns.

Hello Again

2010-02-04T17:48:00.000-08:00

I'm currently attending a Pain Management facility. It's supposed to help me manage my pain a little better or so I thought. They are talking about injection therapy at my scar sight and possible methadone treatment. I'm not to sure about either one of those choices. On a positive note my Blood Pressure is back down to 126/74....WHEW!
I know that I'm not as positive a person as I was going into this. I started out good and everything was going to be fine and I was going to take my life back with a vengeance....it didn't quite work out that way.
It seems as if I'm on a roller coaster that for the most part is constantly going up. I'm struggling in my seat just anticipating the plummet and it never comes. There's no even out or dips just the constant climb. I think if I can get past that and start the ride I can go back to a somewhat normal life.
I was asked to be a part of or linked to a Cancer site. I'm flattered but my condition isn't cancer. I don't know if the person knew that or not. I know the first thing people think of with this is cancer. TUMOR = CANCER that's the way I used to think as well. Neurofibromatosis a condition that causes neurological tumors to grow constantly. I am missing my chromosome 22 which would stop the growth of these benign tumors. Yeah for my genes!
I got my itinerary today for my next trip back east. I leave on April 18 with my husband and return home on April 23. I'm praying for no new growth and I'm praying for some answers. I am so greatful for the NINDS or the NIH. They have been wonderful to me. Free medical that doesn't take the "Person" out of the mix. They are kind and caring.
This is just a little update. I'm going to try to write more at a later date.

When does it just stop and let me breath?

2010-01-30T09:23:00.000-08:00

I've been having a lot of panic attacks lately. I know I'm under a tremendous amount of stress but, really, Panic Attacks???? Just one more thing. I'm not sure if this is going to subside but I sure hope it does.
I've been so irritable and moody. I just don't think that I have the strength to fight this much longer. I feel like, soon, I'll be in a straight jacket. Between the crying and stress and pain....
Don't get me wrong I will fight and carry on my family trait of strength. I will do my best to conquer this thing for my children. They deserve to have me in their lives.
My insurance company is declaring "Pre-existing" condition and refusing to pay the bills. What a load of crap. Like just what I need is more bills....just what we need.
How much needs to happen before we just give up.
My marriage is hanging on by a thread.... Who would expect a new marriage to survive this kind of diagnosis and all the new bills. I can see it on his face.... Stress....Tired.... How can I expect him to hang on when I don't even know the outcome. I love him so much but this is tearing at us bad.
I keep thinking there's something that I can do to fix our financial situation. Something I haven't thought of yet.... Everything just comes up blank....
I got the e-mail from the NIH. I will be going back again in April. This is both good and bad. I now need to do a fundraiser to get me there. We have no extra money and to add the expenses to that would just pull us further under. I can't not go... I need to go because they don't charge me and that's what I need.
I'm going to stop ranting and try to clean my house. I hope that helps my mood....

Off to the docs again.

2010-01-20T11:41:00.000-08:00

I'm really ready for this to be done and over with. The only problem I have is if that day comes then my life would be over and I'm not ready for that. I'm ready for pain free days with no dizzy spells or seizures. I'm ready for the headaches to go away and to stop taking all those pills.
A co-worker of mine showed me this article about a boy in Idaho who has the same disorder that I have and he just got accepted by Social Security. What an amazing kid. Just turned 18 and was diagnosed with this at 4. This disorder took his Dads life. That scares the shit out of me.
Positives: I'm alive and thankful for that. I have a wonderful family and the best kids on the planet. I have so much more love in my heart these days. I can still dance...(at least in the comfort of my own home)
I'm trying to see the positive but it's hard when my "symptoms" pop up. Yesterday my head hurt. Today it's like my eyeballs are throbbing. So, try to picture for one moment what it would be like to see, drive, work with your eyes constantly throbbing on the outer vision. Needless to say, I find myself frustrated, depressed and just plain down. I want to be happy and I want to better myself for my kids. I want to lose 100 lbs and I want to live to see my great grand children. I want to be able to play with them as well.
You know, it seems as if I'm only on here for pity parties. My own personal hell, hidden behind a smile and released on this form of free therapy. Wow, I need to buck up and snap out of it.

Still Pluggin' along

2010-01-07T13:00:00.000-08:00

You know I didn't even realize that when I wrote those two posts that I was talking to God. I just started typing in the middle of a frustrated moment and didn't stop to read them until the end. It's funny how we stop and talk to him. It becomes second nature.
I went to get a sleep deprived EEG yesterday and had an appointment with my new Pain management doc. My blood pressure is dangerously high. I am in danger of having a stroke. What a blow to my ego. I have always teetered on the lower end of of the spectrum. I've even been told that it was too low at one point in time.
So, when does everything just kind of slow down? When is it OK to start looking forward to stuff again?
My whole life has revolved around one pattern. Whenever something good happens I can be guaranteed that something bad will come and take it's place. For example. We had a good family growing up, or so I thought, and then my dad left. Then my mom made our lives pretty fantastic growing up and then I decided to screw up that whole relationship to the point where we were barely talking. I fixed that relationship and it was wonderful and then she got sick and past away. I got married to a wonderful man and then I got this freaking brain tumor disorder.
As much as I think that I can keep trying to see the happiness in my life I am scared to admit there is any for fear of it being destroyed. How do I change this cycle? How do I make it OK to be happy again? How do I get to the point where I can start pointing out all of the wonderful things in my life without the fear that they will disappear.
This is my fear. If I give into what my heart wants me to then my heart will be crushed. How is this anyway to live. So now I need to chose the lesser of two evils. No matter what I chose I lose.
My boys can see it in my face. They can see that I've resorted to a blank feeling. I cry at the drop of a hat and I literally have to force myself to laugh or smile most days. This isn't fair for anyone, me included. This could all be avoided if I could just find one way to be able to enjoy the wonderful gifts in my life. I am scared that if I show any form of excitement it will all be taken away.
So, what do I do? Maybe this is why my blood pressure is so high.
Don't get me wrong on any of this. I love my family more than anything in this world. I want nothing more for them then happiness and good health. I want everything good for them.
I'm rambling...I just need to buck up and keep moving. I need to set my course and steer the path. I need to draw strength from my family and them from me. I need to stop whining all the time.

Lord, Are you there?

2010-01-06T04:38:00.001-08:00

I'm so numb. It's like I'm in this bubble and everything is on the outside trying to puncture it. Stabbing at me with push pins. Poke Poke Poke!
I really need something to give. I know you're out there Lord. I know I can feel you and I'm just wondering WHY?
I know that without suffering there can be no compassion. How much compassion do you want me to have? Would you like me to lose my house and my kids? Would you like me to end up in a mental institute complete with straight jacket and padded walls? What do you want from me? Do you want me to suffer? How about my family do you want them to suffer? How about all the fear and unknown in our lives right now...... How much do you really think the boys can take before they crack..... How much do you expect Derek to be able to take before he finally says enough is enough? I need some answers God. I deserve some answers.
My brother had an MRI and it came back abnormal.... I thought that the deal I made with you was that this stops at me and I will try not to complain and even make jokes about it.....What happened to that? Why can't this just stop with me?
What is your plan for me and my family? Better yet... What is you plan for me? I am at the end of my rope Lord. I know you've seen me crying, I know you've seen me so scared I can't sleep. I know you can feel what I'm feeling so WHY??????
I don't want to lose my home....my kids...our life...
I don't want to see my brother or anyone go through this....
I want to be able to work more and contribute more to our family...
I'm tired of pawning off everything we own just to cover bills...
I'm just Tired...
Tired......
When is it our turn to take a break and relax....Not have to think about anything but fun and relaxing... I miss my smile... I really miss Derek's smile and what about my boys....
Seems they are only having fun and smiling outside of the home these days. I can see the worry and frustration in their eyes and they are just kids. They deserve to have fun and just be kids.
I want you to really listen to me, Lord. Please hear me... I'm tired. We need some peace. We need to see the light at the end of this tunnel. My boy deserve a better life than this. They deserve to not have to worry and to be happy. Derek deserves to live through at least one day where the bills aren't hounding at his every thought. I deserve to be able to not have to worry about everything all the time.
Please just hear my prayer.

Is there really a God?

2010-01-05T14:34:00.001-08:00

You know unless suffering is a term of endearment than I don't believe it. Why must one person or one family suffer so much. Why did it have to be us and who in the hell decided that this was the type of life I wanted.
First you bless me with two beautiful children and then the fathers flake out. Then you bring back the relationship with my mom only to take her away from me. Then I meet this wonderful man and as newlyweds we get blessed with heart attacks and brain tumors...
Really fucking nice. For every good thing that has happened to me in this life something screwed up or just plain fucked up has to come and show it's face. Well, you know what???? I'm done being happy for the good things in my life. I'm done showing any kind of happiness because all you are going to do is stomp on it. Take the few seconds of joy and shatter them.
I'm tired.I'm drained. I'm done. I am having a really hard time trying to keep it together. If this is truly how life is supposed to be then Why? Why even try?
This family can't take much more. The abuse on our emotions needs to stop. This roller coaster is done and I want off.....
Out of all of this one thing is true. I love my family enough to try harder and fight harder but let me ask you this.... How much can one person take??? How much can one family take???? Don't my boys deserve better than this??? What did they do to deserve this????

Hello Again!!!!

2009-11-08T21:03:00.000-08:00

Well, I haven't been on here in quite a while. My life has been busy so let me start from where I left off....
I started working. I got a job at a local "do it yourself" warehouse. I love my job but it's hard work. I'm on my feet a lot and my knees and ankles hurt. Originally I was hired for seasonal employment but they decided to keep me and now I am working on the pack down team. I love my job and my co-workers but this job is taking everything out of me.
I went back east again to see my doctors. I had my scans and they found no new growth and no new tumors. They said I'm doing really well and to keep in touch with them when I'm not there. I did e-mail him this weekend because of major head pain on the left side along with stars and dizziness.... One would think that I could just deal with all of this but it's really starting to get to me.
I get up everyday and make my coffee, eat breakfast, shower, go to work, and come home and crash. If I try to add any more into my day I'm toast. I try to add some exercising into my day and I feel as if it's sending me backwards. I'm just trying to live a normal life but it's really starting to wear on me.
This whole disorder doesn't just affect me. My kids are worried all the time. It's getting really hard to hide the way that I'm feeling with them. Derek's not sure what to do. He tries to be understanding and supportive but I know it's wearing on him too.
Medications...what can I say about them. If I want to feel better and pain free then I'm a zombie....If I want to be awake and alert I'm in pain.... How do I win with this one?
I know that I should just be thankful and move forward, but I have this constant reminder in the form of pain that keeps holding me back. I've gained sooooooooo much weight is sickens me and I do have to look at myself everyday for that constant reminder.
I know I've been complaining in this entry but it's where I've been. I'm going to try each day to move a bit further ahead of this. Continue to smile and joke about this and love my family more everyday. I do have a lot to live for and that's what keeps me going.
The boys are doing great...and so is Derek. It's like we got on this roller coaster that won't stop climbing. Seems like we are stuck going up against a brick wall. Occasionally we hit the dip.....OK we hit the dip a lot but that brick wall keeps getting harder and harder to pass.
I do have to say that I am one of the lucky ones. I've only had one surgery and, although I complain a lot, my symptoms aren't as bad as others I know. I am blessed for that. I pray everyday for my friends who are going through this everyday. God dealt us this hand and it is he who will guide us through.

I have a phone interview today...

2009-04-24T12:24:00.001-07:00

That's right!!!! I'm trying to go back to work. I'm nervous but happy. I hope my kids can handle being on their own. I really hope that we can get out of debt with this.
I have high hopes for the future as we all do. This summer I want to go on camping trip with my family and trips to the beach. We live so close yet so far away.
Wish me luck...I have a couple of other ventures that I'm trying to work out. I really do like being home but I need to get out into the world as well. I am hoping that this will help my mood.
I pray that I don't get headaches and such. I'm praying that this is something that I can do. I would really like to get into a company that understands the fact that I have to go to Maryland Twice a year and that I could be having surgery soon.
Keep your fingers crossed.....

Happy Birthday to me!!!!

2009-04-22T17:47:00.000-07:00

Today is my birthday. It's not a big deal except it's another notch on my list. The list of things I want to do before I die. Before I went into Brain surgery I had this list of things to look forward to and my birthday was one of them. Other things have been checked off that list as well (Christmas, Matt's birthday..etc).
Derek forgot it. My boys remembered though and so did numerous other people. I was sung to a lot and it was great.
My birthday to me represents the fact that I did it. I'm doing it!. I can beat this thing one birthday at a time. One milestone at a time. Take everything as it comes because tomorrow is just another step.
Things may not be perfect in my life but I do have wonderful people in it. I wouldn't trade them for anything. I love them so much.
Everyday is a new stepping stone....a different beginning...My life!

OK.... Time to act like an adult again.

2009-04-21T08:06:00.001-07:00

I vented yesterday and I guess I deserved it. I'm so tired of all of the bills and the fact that the government isn't helping the "little people". I've written a couple of letters to Obama and haven't even recieved an automated response. Boy did we chose the wrong president. I guess I can't complain too much. The government is funding the clinical study that I'm a part of. In fact if it doesn't get cut then they will do my next surgery.
I'm just so frustrated that my husband is working so hard and he has no money coming in. We had to "rob Peter to pay Paul" yesterday and I'm not sure its going to work because people are stealing my money. We are overdrawn and over-extended. I feel as if the Devil is using us as his personal pawn in life. He's not allowed but it sure feels like it. God can bring you to it and bring you through it but what about the things that God doesn't bring you to? I don't think that he would put this much on one person.
I feel as if I'm being tested to see how much I can take before I crack.
I tell you right now..... I'm past cracking... I'm done... If this is what God was waiting for then I'm here I'm cracking and it's time for him to carry me.

I have an Orientation tomorrow at the Employment department and I'm hoping they give me some help on re-training or schooling. We need the help and I need to find a new career.

I'm done venting. I do feel, that SSDI should have approved me but since they didn't what am I gonna do...lay down and Die!!!!! Not a chance....

Why does it have to be this hard?????

2009-04-20T13:35:00.001-07:00

OK so we are trying to get caught up and money is just not meeting what we need it to. So, today in the mail shut off notices. I'm so sick of this. I'm trying but I can't fix this and I can't fix myself. Why does it have to be this hard?
I'm so tired of all the crap....Life sucks !

New Update!!!

2009-04-20T10:44:00.000-07:00

Wednesday is my birthday Woopidy do!!!! I'm not excited because nothings going to happen. No cards, presents, cake..... My hubbies out of town. I sound pathetic don't I. It's not about all the gifts and stuff. I'm down because who is here to acknowledge it? Last year was the first time since my mom was alive that I had a birthday cake...Thanks to Derek and his Mom. It was wonderful. I liked it so much. I miss my mom. She always made our birthdays all about us. It felt good to have cake with the family and even blow out the candles....
Oh well, Life goes on.
I have an all day seminar on that day. So I will be busy. Hopefully they can help me re-train for another job, maybe in healthcare.
I'm back on anti-seizure meds. This is a good thing but now I'm having trouble completing thoughts and sentences. If this post sounds random and mixed up that's why...
The sun has been out now for three days. Saturday we went to the fountains and the kids ran through. Sunday we pulled weeds and grass and had a water fight. I love acting like a kid....
All in all things are OK...Just trying to find a way to pay the bills and keep up with day to day life.

Back in the Hospital....YUCK!

2009-04-09T08:28:00.000-07:00

It was a great day here at the "White House" and we were all outside enjoying the weather. I was sitting on our bench and then it hit. I was seeing stars and then the double vision hit. I just felt weird. All I remember was my husband telling me to go lay down and nothing else. I made it to the couch, mumbling crazy incoherent (sp) things and don't even remember it. Derek was asking me some questions and I wasn't responding. The lights were on and no one was home. I just don't get it.....
He rushed me the the ER and low and behold I had another seizure.... My head was pounding so bad that I felt like my right eye was being squeezed with someones fist. They gave me a CT scan and called in my scans from Maryland. They also gave me Dillated and Benedryll and Zophran.
Well, I was released...(big surprise) and told to call my NS and see a PC....Hard to do with no insurance.... I am going to go to the County Health Department today to see about getting on the meds. I'm still waiting for the state to call me back and tell me if I can get approved on medical.
I know why this happened and I know that I am supposed to be on meds. I need to try to stay calm in the event of undo stress. Everytime I stress out I have one. It's horrible, but with all of the new stress it was bound to happen.

I think it's time that we all write e-mails to the President again. I'm so sick of scraping by and wondering why. We all need medical insurance and if we can't afford it this is supposed to be there for us. Why is it that our tax money and the relief money isn't going where it should. This country is falling apart and fast. Businesses going under and more people are homeless....Oregon has one of the Highest unemployment rates and they give us money to build a new bridge....claiming that it will create job...Big clue!!!!! Not all of us can do construction... What a joke. They also gave Oregon money to Dredge the Columbia river.... That isn't going to give me a chance at a job either. What a joke....
They say that for every job opening there are at least 100-200 applicants. College graduates are working at Mc Donalds. Why don't we worry less about what's going on in other countries and try to take care of our own.
Sorry to vent, I just hate the way the government is spending the "relief" money....

I'm doing OK now. I was in bed all day yesterday and still have a little headache today. Such is the life of a brain tumor patient.

Spring weather and a new Spirit!

2009-03-28T09:09:00.000-07:00

For the last two days we have had 55 degree weather and no rain. I took full advantage of this and mowed the lawn, weeded and trimmed back the hedges. I am absolutely bushed.
I'm happy to report that my Hydrangeas made it...all three (my favorites next to lilacs). Someday I will have a whole mess of lilac trees in my yard. This is my dream.
My trees are blooming and most of my grass survived. I was worried because our winter was so bad. We haven't seen a winter like this in 60 years. When I wonder through the neighborhood I see people pulling all kinds of dead plants out of their yards. I thought for sure my plants were toast. Even my Baby Japanese Maple survived.
Spring is in the air and the flowers are blooming. It is bringing new life to the "White House"...Even my boys jumped in for some good hard work.
I saw a movie and there was a quote in it I really liked.
What sound does a blooming flower make? It doesn't need to make a sound to know it's pretty, it just is.
Of coarse it was in one of my kids' movies but I still liked it.
There's something to be said about giving energy both negative and positive to things. I've given these tumors so much negative energy that I think now is the time to start with some positive. I'm going to try to embrace the Spring and Summer weather with a new positive attitude about everything.

Maryland Trip

2009-03-26T10:17:00.001-07:00

First I have to say a great big THANK YOU to my sister in law Laura for putting up with me and helping me to be not so confused and to find my way. Also, Thank you for helping me step outside of my box...I love you!!!!
I also want to thank everyone who helped get us over there. I couldn't have done it without you and when you read on you will see just how important this trip really was so....
THANK YOU SO MUCH FROM THE BOTTOM OF MY HEART!!!!!!!
We flew in so late on Sunday and our cab ride from the airport was almost $100.00....HOLY CRUD!!! We almost passed out..... We got to the hotel only to find out that no one over there believes in French Vanilla Coffee Creamer....hmmmm right there we should have turned and run but we didn't. We stuck it out.....
The first day was a killer. I had to check in with admissions at 7 and off to testing after.
Blood work
MRI's...3 then
Clinic....done by 5pm...YUK!!!!
Day two....
Hearing and balance....woo hoo kind of fun....7 hours
Day three....ENT... Eye doc and then my eyes were dialated...double YUK!!! 7hours
Day four....Time to go home but not before nurses clinic... and I got to see my New Neuroseurgeon Dr. Ashtegari...

What we found:
A new cyst in my sinuses small but we will monitor.
A new tumor in my left auditory canal small and we will monitor
Two new tumors in my spine, again small and monitoring.

They accepted me into this clinical study. What this means for me is that they are taking on all of my medical bills. testing, surgeries and travel expenses for this. They are the best of the best when it comes to my disorder and I am in good hands.

A new worry. I found out that I am a spontaneous case. I developed this in my mommys tummy when the cells split about the 4th time which means that my children have either a 1 in 2 chance of getting this or a 1 in 4 chance. Scary but at least I have done my research and I know who to call and where to go. I can monitor them and watch for the signs. They will be accepted into the NIH on the same deal as me if they have this too. That made me feel better.

All in all this was a good informative trip. I feel good about going and I know that this is the right place for me to be with my disorder. They really know their stuff.

Thanks again to everyong for all of your nice thoughts and prayers and all of your help with the fundraiser. I really appreciate it. YOU ALL ROCK!!!!!

What a week....

2009-03-06T08:00:00.000-08:00

At the beginning of the week Derek's Great Grandma Mimi passed away. She didn't like being called grandma but she was one incredible lady. The last time I was able to spend time with her was when we were getting ready for Mom's wedding and we were making the party favors. It was an assembly line. She filled I wrapped and Dottie tied. I had so much fun. She was an incredible woman and I'm just sorry that I didn't get the chance to have lunch with her where she lived. Derek and I told her we would and we didn't. We just live too far away or weren't down there long enough to be able to visit. And then you have the whole rule "no semi-trucks allowed" I could go on but I dig into the real reason at the end of my blog.
At 1:45am I got a phone call from Derek and he told me that Grandma Juanita passed away. She was the type of woman who always looked fabulous. She would grab your hand when talking to you and you never saw her without her lipstick. Her smile went for miles and you could feel it before you even walked into the room. She let me into her heart and into her family. She is the one who gave permission for Derek and I to get married. She would tell me stories of all her husbands and how she missed all of them. She would point to pictures on the wall and tell me who they were. She has family pictures all over her walls.

This week is a rough one to say the least. I can't imagine what Derek's Mom, Grandma Dottie, sister and Tom are going through right now. I was only graced with knowing them for such a short period of time and I feel like such a great loss has hit our house, and it has. They've known them their whole lives and to not have them anymore is the same as not having my mom.

I think that our society moves too fast and doesn't take time to stop and make time for family. Life isn't always easy. It's not handed to us and we can't always expect things to be a cake walk. We need to work for what we want and we also need to stop and smell the roses. We need to spend quality time with loved ones and enjoy what God has given us. We are not going to be around forever. We need to make the most of the time we have today.

Stop running the "Rat Race"! Stop Chasing your tail. Start walking and skip once in a while. Give an extra hug, just because. Call a friend or loved one just to say Hi! Not just on the holidays.... Make time for them and in the long run you are making time for yourself. Only then are you truly living.....

Hi!

2009-02-25T06:19:00.000-08:00

Today I have a meeting with my Guys! If I refer to them as that then I'm not so nervous. I still have to get Timmy ready and Matthew is still sick. I'm still not sleeping. I'm really not sure how I'm surviving on 2-4 hours of sleep a night. How does anyone survive on this. Sleeping medications don't work. Did they take a chunk of brain out of my head that allows me to sleep. I don't know.
I have been running over so much in my head lately. I don't even know where to begin. You know I write on here because I feel like it's my outlet. I have to let it out somewhere. I am losing my medical but I am trying to get on OHP. Pray for that. I am trying to act as normal as possible so that I am no longer an embarrassment. I'm trying to return to the work force to get some money into the house. I'm feeling like a failure but at the same time I'm taking so many pills for pain for my headaches that I'm sure to have an ulcer soon. On a lighter note, I have everyone believing I'm normal again. I guess if this is all it takes than that's what I have to do. It was too much for them to take that something was actually wrong with me. Never mind the fact that I forget things I blank out. I'm getting pretty good at playing it off.
All I need to do is work my ass off and save as much as I can for my boys. As long as I know that they are taken care of I will be fine. That is my only goal. Everything else is secondary. Everything can wait.
So, I promised someone pretty cool that reads this that I would post pictures of my boys receiving their models. Here they are.

My fundraiser

2009-02-14T11:46:00.000-08:00

Below is a letter that I sent to people in my address book. I now am feeling guilty for sending it. Not because I don't think they won't want to help but because I'm so tired of being everyone's charity case. All I want is to be back to normal. I'm just Tired and I think this is the last of my fight. I'm going to my Last doctors appointment on Monday and I'm going to ask him to wean me off of my meds. I can't afford them anymore. My husband has taken on this role of taking care of everything and now I can't bring myself to tell him that I think something is wrong. Either I have my meds all screwed up or I have tumors growing. What else could be causing all of this pain. I'm just so tired. I'm losing my fight and it just seems like I should be putting my energy into my children and my husband. I would rather be spending time with them and knowing that I'm enjoying them. I don't want to continue to leave them with a bunch of unpaid medical bills. I'm just TIRED. Here's the letter. You tell me what you think. Maybe I should apologize and send out a retraction e-mail.

As all of you know I am battling a benign condition called Neurofibromatosis Type two. What this means is that I don't have my chromosome 22 which will disable tumor growth on my spine and in my brain. This has caused numerous tumors called meningiomas to grow on and in my brain.
I had surgery on August 25 to remove 5 tumors and they were only able to remove 4 fully. The 5th one was a bugger and was attached to a major vein in my brain and it started to bleed. My Neurosurgeon was able to remove 90% of that one. This surgery has left me with some deficits but I am alive. I continue to live my life the best that I can.
This past year has left my family in a financial hardship to say the least. I have been unable to work and my husband has had to pick up the slack. We are trying to survive on one income and it's so overwhelming. The medical bills keep piling in and are totaling over $150,000.00 as of right now. Needless to say my health has to be put on hold so that we can try to catch up.
You are probably wondering why I am needing a fundraiser. No, it's not for our bills. We are working on that. I have the opportunity to fly to Bethesda Maryland to the National Institute of Neurological Disorders and Stroke. They are paying for my plane fare and reimbursing me for most of my hotel stay. I need help coming up with the money up front. This trip is going to cost me about 1200.00 out of pocket before I get reimbursed.
There are benefits to going to this clinic. I will get two FREE MRI's, Vision and Hearing Testing, Gate and Balance Testing and Vestibular Testing. This may not sound like a lot to you but it means a savings of about 10 - 15 thousand dollars to my family. It also will put me in line to have my next surgery at their hospital at their cost. My insurance isn't good. This is the only way I can see us continuing the fight of this disorder. I myself am running out of fight. This is my chance to give this disorder a swift kick in the butt.

I appreciate any ideas and any help you can give,
Thank you,
Kelly White and Family

WHY?

2009-02-12T09:25:00.001-08:00

I'm just sick to my stomach, my head hurts and I can't even fathom the thought that no one will listen to me. I have been writing letters to the President, Governor, Senator, Congresman, etc.... The only response I got was some stupid generic auto reply saying that if my inquiry required a response they would get back to me. Really???? Guess What? Not one person replied. Not the news, the president, Governor, etc.... I'm done. I've lost my faith in a system that is supposed to be there for us the people. In the Declaration of Independence it states "We the People" Whatever. Where do we fit into that mix? You only count if you have money or you are part of "Big Oil" Someone like me is better off gone in their eyes. It just makes me sick to my stomach.
I'm trying to raise money for my trip back east and I'm trying to find out why my head is non-stop hurting. I want my life back. I want to be me again. I don't know how many people out there can handle pain in their head everyday like this. I see spots I'm dizzy I just want it to go away. I want it to stop. The worst part is that the more it hurts the more pain killers I take. I wait until the last possible moment but I feel like I'm living on them. How is that right? I hate being drugged up all the time but I hate that my head hurts so much. The more this vicious cycle happens the more the depression sets in. Wow!!! I wish they never diagnosed me. I wish I never went to the doctors. I wish I just lived my life fully until one day when BAM that was it. I wouldn't even have known what hit me.
I'm tired of this and I'm thinking that either I have tumors growing or that my meds are all screwed up. Something is causing my head to hurt and all of the other symptoms to increase. Something has changed. I need to figure all of this out.
I just needed to vent. I'm so tired. I only get about two hours of sleep a night and my head has been hurting 24/7. I look like I've been hit by a MAC truck. I'm just so tired. I just want it all to go away. I want my mom to hug me and hold me and tell me everything is going to be OK. I need her right now.

Migraines and Some Light at the end of the Tunnel

2009-02-09T20:02:00.000-08:00

Well, I'm battling migraines, insomnia, memory issues...etc...but I guess that's what they give you drugs for. I mean I have the ability to try out all of the latest greatest pain killers and migraine medications that I want. The downfall to this is the fact that I hate taking pills. I don't want to become addicted and I sure as hell don't want to become dependent on something just to make it through the days.
So, you are probably wondering what the light is at the end of the tunnel. Well, today I took my klutz of a husband (you know I love him) to the doctors with a sprained ankle. We see the same doctor who I absolutely love. He's a no nonsense kind of doc who doesn't just prescribe pills to get you out of the office or make his quota. He really cares about you. He asked about my brother and me. We made fun of Derek together...LOL
Now, my appointment isn't until next week but he was asking me how my headaches were doing. I told them they sucked and then he asked me how my memory was doing and I said the same thing but I would talk to him next week. He said good and don't miss the appointment because he has some ideas for me. HOLY CRAP!!!!! Someone has a clue....
All I wanted all a long was some validation for this or some help or pain management and now maybe I'll actually get some help. I'm excited. Even if I was able to manage the pain and get back some of my memory or at least learn to regain or maintain it I would be happy. I just couldn't imagine not having him as my doctor.

All in all, if Derek didn't twist the crap out of his ankle then I wouldn't feel so good about my up-coming appointment. I usually dread the next visit bearing the same news:
The tumors are still there. You just have to live with this. There's nothing I can do for this. I know this sucks but.... We can TRY to up this medication or add this medication.
It does get tiring trying to live a normal life after brain surgery. At first I felt like a million bucks. I was starving. I couldn't stop eating. The deficit I had was on the left side and my leg dragged and was weak. As time went on I started feeling like I was violated. Like I wasn't me anymore. I would wake up and the scar is there and I would cry all the time.
I try to walk and I fall. I try to talk and I stutter. I have Extreme Fatigue and Blank Spots and Seizures and major weight gain.....All of this means nothing compared to the fact that I'm alive. I fight these feelings everyday because I am alive. I want to go back to work. I want to be normal and I want to be the best that I can be.
I want to play basketball with the boys and go hiking. I want to go walking without falling or dragging my leg. I do have a lot of wants but most of all I want to live. I will live and fight this thing to see my boys grow.

Next month I go to Maryland to the NINDS. I cant wait. The doctors there will be able to find out so much about Neurofibromatosis Type Two. They will be able to find the answers to help my children and their children. I also get all kinds of free testing out of it. That right there is going to save me over 10,000.00. All I need to come up with is 900.00 that is paid back to me before I leave them. Pretty cool.

Boys and their Toys

2009-02-06T18:37:00.000-08:00

A very good friend of ours treated my boys to some good ol' fashioned fun. They started and now they haven't been able to stop. Well, the smaller boys, Matt and Tim have been able to walk away but Derek is hooked. Just check out the pics below and you will see what was happening after the kids went to bed last night. Now, my camera is in the truck still so I had to take these pics with my phone.
This post is just for fun....

Road Trip....

2009-02-05T19:53:00.000-08:00

I promise I will have more pictures soon....
I had a blast we started off to Pullman Washington and it was a mess. We woke up to Snow. Yep more snow in Oregon. We jumped in the truck and headed out anyway. My husband is such the trooper. I, being the co-pilot, was really just along for the ride.
We got out of town and onto i-84. By this time it was snowing even worse and we were getting worried. We fueled up in Troutdale and I got coffee and again we were off. No rest for the weary, especially when the snow is falling and it's 29 degrees outside.
We did good on I-84 until Boneville Hill where people were losing the ability to think rationally. I mean when you have a layer of ice and then 2-3 inches of snow do you really think it's a good idea to pass trucks going 60??? And, to pass those same trucks who have their hazards on because of vehicles in the ditch ahead. I couldn't understand it but their were angels on I-84 that day.
We came around a corner and in the blink of an eye the truck in front of us started to lose it and slide sideways in the tunnel. The 4-wheeler (regular car) in between us was losing it and then their was us.
My husband just calm cool and collect talked me through the whole thing. He used his Jake brakes and straightened out and and saved us and the car in front of us. He is a professional driver. He amazed me with the way he maneuvered this huge piece of machinery like it was a feather and made sure we were all safe and made sure my mind was at ease. My hero. Such a Cliche, but true.

So, then it was the hill after the tunnel. Yep you guessed it, we didn't make it. But this didn't stop us either. Derek jumps out and throws chains. That's the picture you see above. Just look at all of the trucks. We completely shut down the eastbound side for about an hour for this. I did take pictures of a State trooper giving a ticket to a driver who was refusing to put chains on. That is one big no no. I really think that he just didn't have any of them to begin with. He was in a Big Rig and was trying to weave in and out of all of the trucks and didn't make it. I think he might of had chains on at one point in time but put them on wrong and they fell off.

I will write more tomorrow and add more pictures. I have pictures of Colfax Washington (below) which makes me think of Mayberry and Andy,Opie, and Aunt Bee. I can just imagine sitting in front of a General store drinking an ice cold Cherry Coke and gabbing with the ladies....Good times. Just a thought to leave you all with.

Live, Love, Laugh, & Learn

2009-01-23T09:42:00.000-08:00

Words to live by.
- We cannot put off living until we are ready. The most salient characteristic of life is its urgency, "here and now" without any possible postponement. Life is fired at us point-blank. -Jose Ortega y Gasset

Just a quote I ran across. WOW! I kept reading it and reading it. It's true. Why put it off. Why wait. Life is fired at you. It's a gun pointed at your head and the trigger is pulled. BAM!!!! you're a Mom! BAM! you have Brain Tumors....See where I'm going with this....
Now, some of you out there plan every aspect of your life... 0r so you think. I didn't plan my children. I didn't plan for my mom to get sick. I didn't plan for life to go the way it did. I didn't plan to meet the man of my dreams after I had my children. I didn't plan on getting brain tumors.
We as a whole don't plan on getting into a car accident or sending our sons and daughters off to war. What we can control are our smiles, our love, our inner happiness and our joy.
No one can take away the peace that I feel when I tuck my children into bed every night. No one can take away the love I feel everyday when I wake them up and kiss them good morning. No one can take away the love that my husband and I share or the magic of the birth of my new great nephew Gavin.
Life is short and and we need to not miss out on the little moments that can make us so happy.
-The tragedy of life is not so much what we suffer, but rather what we miss. - Thomas Carlyle

Crazy People make me happy

2009-01-14T08:01:00.000-08:00

I see them on the news all the time making weird comments and funny gestures and I just love it. I laugh and laugh and it just makes me feel good. Not because I think that I am better than they are or anything like that. And, don't get me wrong here, I'm not laughing at them, I'm laughing with them.
Have you ever taken the time to check out the person walking down the street talking to themselves and just listened in? Take a moment before you judge. They are having in depth conversations with someone who gives a damn and listens to them without judging them. Most of us do it everyday in silence in our prayers talking to God. They don't care what you or I think of them. They lost that a long time ago. Life threw them a curve ball and they are rolling with it. They do seem happy. Smiles on there faces, bouncing around like children, talking to people only they can see. And they are happy.
Most adults lost the ability to be truly happy when they were children. We lose that ability to find a toy out of a stick and a game out of two shoes and three friends. We no longer roll down the hills, or laugh because snot bubbles came out of our best friends nose. Most of us have one best friend not 10. We would rather go to a bar than play legos or watch TV than go to the park. We are afraid of the neighbors dog, we don't want to pet it.
I just feel like society is needing an overhaul. We used to know all of our neighbors. We used to know their kids. Our parents had block parties and Tupperware parties and BBQ's. If I sneezed wrong three blocks over my mom knew about it because she got a phone call from Mrs. Smith.
We need to pick one fun memory everyday and just let it stick out in our heads. Live it and tell our children about it. Sledding, basketball, bike rides, Soggy and Boppa's house with chocolate chip cookies. You name it we need to pass this on. Our kids know video games and TV, cartoons and electronics.
This country has devoted a whole trade show to the electronic gaming industry. New and improved ways to kill brain cells in your children. New ways to keep your kids inside and help them to gain weight. We have TV shows that are dedicated to weight loss and clinics dedicated to the obese.
I'm not sure what brought this up other than the fact that I had a lot on my mind. I've been upset because every time I try to work out I end up with a headache. I'm trying to lose some of the weight and gain some strength and it puts me in bed for the rest of the day. Not to sleep because I'm dealing with insomnia again. I'm done with my head hurting. I just want to get out and play with my boys again. I want to run and jump and play basketball with them. I want to laugh till my sides hurt and I have tears coming out of my eyes. I don't want to do this and end up with a headache. I also feel like I'm not teaching my children any kind of lesson by being in the house all of the time. I'm not sure how much longer they are going to let me drive and that just makes it worse.
Chin up and moving forward I just need to re-define my terms........

So, back to the beginning of my post "Crazy people make me happy", what's the difference between them walking down the street talking out loud and me voicing it on here? Am I crazy too? Are all of the other bloggers crazy too? Or, are we just closet crazy people.....LOL

A happy pill and a cuddles from my hubby

2009-01-06T19:51:00.000-08:00

Good medicine when you're feeling blue. He really does take care of me when my head starts to explode. We were laughing a little earlier. You see we have really good insurance so if a tree were to fall on our house we could collect the insurance money and start over....hmmmmmm maybe someplace warm.....
Wishful thinking.
I watch those shows House hunters International. I love it when they go to tropical places and get beautiful homes for next to nothing. I mean I'm in. I would love to spend the rest of my days lounging on a beach with my only worry being "should I have a Mai Tai or a Margarita?" "Lounge chair or beach towel?"
We could go to a tropical place that loves Americans...(not many left) and I could raise my boys there. Derek and I could sell arts and crafts to the tourists and spend our days loving life.....hmmmmmmmm living a pipe dream....LOL
I'm definitely on my happy pills. You see, when you have brain tumors...You get to tell the doctors what you want. You don't have to wait for them to prescribe it to you. I want to try this one this time doc....OK.....
It's not really all like that but it sure feels like that sometimes. For the money that we pay out in prescriptions I should own the companies.
I do have to say that through all of this and every up and down Derek and I are still here. He married a Hottie with two kids and ended up with me, some brain tumors, and some funny deficits, and he's still here. Gotta love him.
We're going to be OK.
HAPPY PILLS AWAY!!!!!!!! Tomorrow's a new day

So Now What?????

2009-01-06T10:07:00.000-08:00

The doctors are upset to say the least but ultimately are leaving it up to me. It is my body and my choice whether I go back to work or not. I can try. I have to do something. I can't have people feeling bad because they are unable to help us right now. It's not there job to help us. We are truly thankful for all the help we have received throughout this time, but now it's time to step up and make it happen. It's time for me to ease others burdens.
I figure between my two boys, my brother Kevin's 4 kids and Scot's two kids, one of them is going to become the doctor who finds the cure for this disorder. Then I will know that all of the kids will be safe.
I am off to the Vocational Rehabilitation Office to see if I will be able to work and then it's off to the work force. We'll see what happens...Wish me luck.....

I just don't know anymore

2009-01-04T12:14:00.000-08:00

I'm losing faith in my government in the system in its people. I'm losing faith in the people who think that a computer is always right, yet we pay people billions of dollars every year to fix and upgrade them. I am losing faith in our future and what I have to send my children into when for all I know the only good people out there are my immediate friends.
That can't be so. This can't be the way that God intended it. Good hard working people didn't intend for us to go under but the government, who we have paid into for years does. They are willing to turn their heads and cough and forget about it. They do not care about us or how we are coming to survive through this. They only see me as a number. I am one in a billion of people who have applied for SSDI this year. I am just a number and one with an unrecognizable disorder that has already kicked my case out of the system once so they have started my case over. My new decision date is April 29. It was originally January 29.
Now, I have no choice. I am going to lie to a prospective employer. I am going to apply for a job and not tell them about my disorder. I am going to work full time and go for medical benefits and hope that nothing happens in the process. I don't know how we are going to make it anymore without me working. I'm tired of being a strain on others and I can't keep taking help from others when they have their own mouths to feed. I am not ungrateful by any means. It's exactly the opposite. I couldn't be more grateful. We couldn't have made it without them.
A very nice lady is bringing me a treadmill today to borrow. I posted an add on Craigslist to trade a Printer for a used treadmill and she offered to loan me one. I told her that I couldn't believe her generosity and I was very thankful. She sounds like an older woman. She has a daughter who lives across the way and I told her that Derek is home to help unload.
My goal:
Lose 50lbs
Get Strong again
Get memory back
Get coordination back
Get back to work
Get my independence back

It's time. I can't keep waiting on something that's never going to happen. I can't wait for the government to determine that "oh yeah she does have inoperable tumors" "oh yeah she doesn't have a short term memory or balance"
It sucks that so many people have frauded them each year to make it get to this point. If they would just look at my doctors notes they would see that I have multiple brain tumors..... Neurofibromatosis Type II and had major brain surgery. Maybe they would see the doctors notes that I do have deficits. I don't know maybe this is how they save money. Just put people off until they just can't take it anymore.
I'm going to be ok. I will be fine. We are going to do what we have to do to survive and make it happen.....

I haven't posted in a while

2008-12-29T12:06:00.001-08:00

Christmas came and went. It always comes so fast. The kids had a blast as did I. We had a theme this year. Family Fun!
Each present consisted of good ol' fashioned fun. Monopoly, Jenga, Boggle, Uno spin it, and regular playing cards. We played all of them. It has been so much fun. Lots of smiles and laughing till our sides hurt.
The boys got Leggos and Bionicles. The also got PJ's and underwear. I got a camera and a foot massager. Our house was decorated to the hilt and Santa did come and eat all of his goodies. Matthew and Timothy checked that out first thing. Every year I think they aren't going to believe and every year they prove me wrong. I'm glad they prove me wrong.
My health is good. I am a bit weak but I think I need more exercise. I go today to pick up my prescription for my new dosage of Topomax. They are upping my dosage again. I hope it helps this time. I just go with the flow.
I hope for this year that the Christmas spirit stays with everyone all year long. I don't want it to go away after the season ends. This year is going to be rough on everyone and we need to stick together and make it through in order to survive. I know that there's more to life than material things. Life, Love, Laughter.....This is worth fighting for. Morning smiles and cuddles. Sunrises and Sunsets. Children laughing running and playing. Families enjoying themselves. This is what God wanted for us. Not mean vindictive people who can walk past a hungry sick child and not think twice about it. Or send your child off to their room to play video games because they are "bothering you" or you are "too busy" for them. Family and true friends are what are going to help make it through this new depression.
My grandma is still alive today. She is a fighter and knows how to survive. She knows how to pinch pennies and she knows how to cope with the pain of losing a daughter to the same cancer she survived. She knows how precious life is and knows Gods will.
Life is worth so much more than what people are giving it credit for. It's worth so much more than what I have given it credit for in the past.
I am so thankful for my family and friends. For the love and laughter. For the smiles and hugs and the wonderful family Christmas. My life is good.

2008-12-19T11:57:00.001-08:00

Make a Smilebox greeting

So This is What I can learn to Expect....

2008-12-12T09:07:00.000-08:00

I just don't have to like it.....
I'm pissed off at SSDI. They re-started my case as of December 9th with no other explanation than the computer is never wrong. Hmmmm, sounds a little fishy to me. I cried so hard after I found that out. I started telling my husband, who I love and adore, about this. I told him that I know he didn't sign up for this and if he wanted out he could leave me and I would never hold it against him. He, of coarse, told me to knock it off and that he's in it for the long haul. It's just not fair to him.
After crying and stressing out like I did I gave myself a monster headache. I couldn't believe how bad or how long it's lasted. It feels as if a hammer is hitting the inside of my scull where my incisions are and behind my forehead. Crazy feeling but I'm seeing spots and I've been down for two days. Yesterday was so bad that I was on anti-nausea meds. I just want all of this to go away.
I think that if our economy is going to go to crap and I need to work extra hard to take care of my family then God can take these back. I don't have the time or energy for them. Also, how am I supposed to help others if I can barely help myself. I want to be able to donate something anything to others and I don't know how. This in itself is driving me nuts.
I am thankful for my family and friends. I am so thankful to be alive and be able to watch my children grow.
Christmas is coming and I'm only a little bummed that my hubby is busting his buns to do everything and I'm the one who has to tell him that we need to concentrate on what the boys want and what the bills are. I also told him that I hate that we always skip me. Skip a gift for me. I was in the hospital for our anniversary. We were broke and he was gone on my birthdays, Christmas, etc..... Depression is sinking in again. I asked him to surprise me. I don't want fancy jewelry. I don't want expensive anything. I want something he can surprise me with wrapped and under the tree. Something that benefits me not him or the kids. Something for me not the house or kitchen, car...etc. Am I being selfish? I feel selfish. Forget I said anything. I guess I just wanted to say it or write it down.
I would be happy if he would just listen to what I had to say as opposed to just nodding and doing what he thinks I said. Typical marriage....
I'm off to run Friday errands....
Have a wonderful day everyone

When do I stop being so scared?

2008-12-01T09:42:00.001-08:00

When do I wake up and not be scared of this? When is it ok for me to walk outside and not be afraid of a seizure of of getting into an accident because of this stupid thing. I'm afraid to walk by myself for fear of falling.
FEAR has taken over my life. WHY?
I'm trying to pay the bills and I'm trying to get more money in the door. I'm trying to get my dissability to start paying me and I'm trying to get the family ready for Chrismas. I'm trying to hold it all together. All I want to do is cry. I know I need to do all of these things and with our limited means it's not hapening. I am trying to fix this and take care of that. I'm trying to go here and do this when all I really want to do is crawl into a ball and cry my eyes out. I should be really thankful that God gave me a second chance at life. I shoud and I am grateful for this opportunity but at what cost?
Our electric on the verge of being shut off
Our phone on the verge of being shut off
Our gas on the verge of being shut off
Our car on the verge of being repo'd
I'm so tired of fighting all the time to stay afloat only to end up arguing with my family and ending up feeling even lower than I already do about all of this.
I'm tired. I need some relief. I need the government to realize that the "American Dream" has died. I need them to realize that we are becoming a third world country. I need them to realize that I am losing my fight inside. I don't have much strength left. I can only juggle so much before I feel like I am going to completly lose it.
I pray that God gives the strength and wisdom to the powers that be at the SSI office and in congress to push my application through. I pray that we get some relief. I pray that the strength is returned to our family and to my soul so that we can go back to the way we were. I pray that people stop being so selfish and learn how to pay it forward like so many of my good friends have done for my family and we intend to do in the future. I pray for peace in this world as well as in my life. I hope that doesn't sound too selfish of me.

Today I have an appointment with my PCP and tomorrow I have an appointment for an MRI. I hope that I figure out what the next step is in this game.
Happy Holidays Everyone!

HI!

2008-11-24T07:57:00.000-08:00

I sit here all day and all night and do a whole lot of nothing. I wish I could work. I feel like a freeloader. I am 33 years old and the littlest bit of stress and I freak out. I get a headache and I'm back in my depression. WHY????
I used to thrive on stress. I used to thrive on multi-tasking. I used to love being so busy that my head was spinning. Now I can barely handle one task. My brother thinks that if I just get back out there and go back to work I'll be fine. I'm scared because what happens if I freak out at work? I wish I could see a counselor. I try to talk to Derek about this but he has so much on his plate right now. He even told me yesterday that he isn't going to be home for Christmas. So, now I single handily ruined Christmas. What did I do that was so terrible to deserve this. All I ever wanted was Love and Family. I already lost my mom, had brain surgery, am losing my family slowly. I'm so scared.
I'm supposed to be the strong one. I'm supposed to be the one with all of the answers. I'm the one that is supposed to work their fingers to the bone for her family. This can't go on like this forever. I need to have some answers. I have an appointment on December 1st with my PCP and then on December 16th with my NS. I hope and pray that someone has an answer as to why my brain is working like this.
I am going to the NINDS in January or February for that study. I'm going to ask them tons of questions. I feel like they probably know more about this disease than I could ever know. It's one of the main reasons I want to go. I also want to know why my vision is blurring. I just want answers.
My head hurts, a dull ache. I'm not sure why but the ringing is getting louder and it's almost as if someone is trying really hard to tell me something. I hope it's something good.
Today I'm thankful for my family, my boys, my life and all the love in my heart. I'm thankful to be alive. I'm thankful for hope and healing. I'm thankful for good friends. I'm thankful for the roof over my head and the warmth of our home. I am thankful for my life.

Call To Action

2008-11-20T09:13:00.000-08:00

I just wanted a title that would make everyone want to read this....Just kidding. I think that everyone should want to read this because it's about me.... again just kidding!
I'm dealing with kids who's parents obviously don't care enough to teach them right from wrong and they want to hurt my boys. I'm dealing with schools who don't care enough to boot the kids out of there and hold those parents and children responsible. They will. I will make sure of it.
I'm doing OK this week. I'm trying to re-learn how to deal with stress so that it doesn't put me into bed for the day. I don't know why but I get flustered and my head pounds and I cry and shake. It's a horrible feeling. I am getting better but I really need to learn how to deal with this.
I had another bout of extreme fatigue this week. I hate it because it feels like I am outside of my body looking in. Like I have no control. Thank God this one didn't last that long.

OK everyone... The real reason for this blog...Time to rock the boat. I applied for SSDI on September 9th. They say that I won't hear anything until January 29th. If I don't hear anything by then I can contest and file a claim with them. In the mean time we are struggling. I am happy to be alive, don't get me wrong. I'm just upset with our system. I can understand that they want to keep the riff raff out but come on. I had Brain surgery to remove 4 brain tumors and I still have 15-20 left in my head. I have 3 doctors saying that I am disabled and shouldn't be working. They still don't want to give me an answer or call me back.
I need everyone to write a letter to your congressman or to the White House. Together we can move mountains, together we can fix a broken system. We need to fix this one. This system can't expect us to live on no money when we can't work. Why do we pay into a system that we can't use. It's almost like they want us to go homeless or die so they don't have to pay us. We need to work as a team to fix this. I don't want to lose my home or my family because of a disease that I didn't chose to have. I don't want to see anyone else go through this as well. And why should I have to depend on others to help me out all the time when I did pay into this system?
I am thankful for my friends and family for helping my family out in our time of need and we will pay it forward someday. We have been blessed by some wonderful guardian angels who stepped forward without question and kept our heads above water. We have so much to be thankful for this year.
I may complain a lot about this and the way things are going but I am still here and I am alive. I am truly thankful for the gifts in my life my friends and family. I'm thankful for my on-line family, my Meningioma Support group... You guys are wonderful.

Pitty Party is Over

2008-11-16T10:51:00.000-08:00

I had a rough moment... OK a rough day. I didn't get out of my PJ's all day and, NO, my head didn't stop hurting until the Nyquil kicked in. I had my choice of taking Nyquil or taking Imatrex and Zofran. I chose Nyquil. At least this way I don't feel so hung over today.

I also think the swelling is back in my head. My arms and hands are numb again. It's hard for me to use them and grip anything. This mixed with stress could have a lot to do with the headache yesterday.

Today I am going to get off my lazy butt and go for a walk. I am going to re-join the ranks of the living and step outside. I am going to enjoy the sunshine while we have it and take in everything this new day has to offer. God is good and he gave this life to me. I am going to enjoy it.

No matter what I do I always end up right back here

2008-11-15T08:10:00.000-08:00

I'm the demise of this family. I can't work. SSDI takes forever to kick in. We are going to lose our car. And I'm pissed off.
I bought one thing with the money my mom left me. It was my car. When I married my husband the car was too small or something and so we got bigger one with payments which was fine at the time. Now, because of my own stupidity, We are going to lose that. I know it's a material item and I shouldn't be upset about it but right now I feel like I'm losing my mom all over again. Why is that. It's just a freakin car. I don't even like it. It's a material item and I could probably use the walking anyways.
I didn't ask for these F-ing tumors or this stupid disease. I didn't ask for the depression that goes along with it or the numbness of limbs. You can have all of this stupid crap back. I don't want it anymore. I'm done with it. I'm done messing with my boys' lives. Did they ask for this. How much F-ing crap do they have to go through before they decide they can't take living with me anymore. This stupid frickin disease....DAMN I'M PISSED OFF!!!!
So what, now I'm allowed one good night before I get a bomb shell? OK Kelly go have your fun and let lose but remember that I'm going to pull the rug out from under your feet in the morning.
SSDI has this new Compassionate Allowances Act. What it is is a Fast Tract to benefits for those with certain disabilities. They put a list of 50 on there. I guess that if you have a brain Tumor or lets say...hmmm 20 brain Tumors it's not good enough. Now, lets say you had surgery for said tumors and were left with deficits...hmmm... You can wait. Yes that's right. You can wait for 90 - 120 days for the first decision to be NO. Then you get to pay some lawyer money you don't have (let's hope by this time you're not homeless) to get yet another NO in another 2-4 years. OK, So, you pay the same lawyer, again, money you don't have (hopefully your not homeless or dead) to possibly get a yes. Maybe this is what they want. Push people to the brink so that they end up not having to pay anything.
I for one don't think it's fair to do this to my children. I'm having to chose medical over food. I'm having to chose electricity over rent and so on. I'm juggling payments with money I don't have and maybe I'm just pissed off at myself for not being more prepared for this.
I'm not so mad about losing the car I guess. It's just how am I supposed to get to my docs and how am I supposed to get groceries. What if me and the kids want to go somewhere. I should just forget what the docs say, forget how I'm feeling, buck up and go back to work. I need to take care of this family.

I really need to quit trying to have fun. Every time I go out or try to have fun I always end up right here the next morning......

Insomnia and getting ready to Party

2008-11-14T11:02:00.000-08:00

Yep, the two really don't go together. I'm going to take a nap here in a minute but before I do I wanted to put down some thoughts. Tonight is my "Girly Party" so I need to be awake for that.
Laughter is good medicine. At two in the morning when all I wanted to do is scream and rant and rave I found myself laughing at Will Smith on Fresh Prince of Bell Air. Cracked me up. I wasn't mad anymore.
Love and friendship can help you through the toughest of times. I have seen some of the greatest people be put through the ringer and for no apparent reason other than to shut them up. Together we prevail thanks to the initiative of one woman who said enough is enough, without even saying it. Actions do speak louder than words. Now we are an on-line family and helping each other laugh and chat and heal. I feel no strains here or the need to think before I type. I know "da rules"! (LOL back the first thought).
I also know that I need to stop thinking about the next step in my journey for now. I need to put it away until my next appointment. I can't let this control my life. I need to try to live as normal as I can.
I think I have some swelling going on. Nothing major. I'm still walking and talking fine. I'm not drooling and my face hasn't gone completely numb. I do, however, have numbness and tingling in my arms and hands. My neck is sore again and the lump on the back of my neck is getting bigger. I'm watching all of this and documenting it just like the docs asked me to. My little black book is filling up quick. The headache is still there but I'm living with it. I can't be too upset with all of this. I'm alive. I can hear and see and walk. I'm going to enjoy every minute of everything until I'm unable to do it anymore.
Look forward to the sweet sounds of laughing children. Morning kisses and hugs for no reason. This is worth living for. The rest is just trivial.....

Wow What A Week

2008-11-13T10:00:00.000-08:00

This week a wonderful person decided to start her own version of a support group uncensored and friendly to the extent that bashing is banned. I guess that means it is censored. I couldn't believe that someone I care deeply about was getting verbally abused by people I respected. My whole world changed and my views on that changed as well. I actually cried for my friend who I have never met but who has offered me unconditional support.
A wise person told me that there are two types of people in this world.
1. Givers - they would give you their last dollar if you needed it
2. Takers - they would take your last dollar even though they didn't need it.

I am the first one. I would and have given my last dollar to a person in need and I would do it again. I've helped to organize a group to sponsor a family for Christmas, that was fun. I am knitting scarfs right now for all my friends and family and to donate to the homeless. I am also trying to find a way to sell them to help raise money for research for NF2 or Brain Tumor Research.

All in all I truly believe in the vision of this new website. Its friendly and fun. I find myself on it all the time. I'm inviting my friends and family because they are in this journey with me.

Update on me.
I had some twitches on my right side and vibrations in my right ear, nothing major. I have more energy now, in spurts. I hope that means I lose some weight. I am smiling more and crying less. I think my meds are leveling out finally. I still get fatigued and confused, forgetful but I'm working on that. My memory is slowly getting better.
I'm still waiting on the results of my EEG and my next appointments are December 1st with my PCP and December 16 with my NS. I also have another MRI coming up.
In January I am off to Maryland for the study and you know they will find a cure for this nasty disease.....I just know they will....
Have a good day everyone and visit the new site. You will love it. You don't have to have a tumor to join. You know me and that's good enough. We need you there....

http://meningiomasupport.forumco.com/login.asp?target=default.asp

Thankfull for the gifts in my life

2008-11-10T08:44:00.000-08:00

I'm not a flashy person. I don't require much. All I really want in life is Family, Stability, Health, Happiness, and Love. Not necessarily in that order. I have a roof over my head. I have a family who loves me. I have friends who are second to none. My life is good.
I am back!
My medications are finally levelling off. It took a while but it seems as if the depression I was experiencing did have something to do with the medication I was on. So, they put you on another medication to counteract it. I haven't cried in two days. I'm still a little moody but I'm not expecting an overnight cure.
I am working on a fundraising idea with a group of other brain tumor survivors. They actually are listening to my ideas and we are all contributing to each others. It's amazing what we can all accomplish when we work together and not against each other.
Today I am going to try to clean my house and finish my laundry. Rainy season has hit here in the Pacific Northwest so we have to get really creative about what we do indoors. I have a bunch of craft ideas that we will be starting soon. I also save a lot of the major re-arranging and cleaning for this time of year to help keep us busy. If we can do it we might even paint.
I am also wanting to learn how to use my sewing machine. I want to start making quilts. I want to learn how to make story quilts and donate those as well. Next year, it would be nice to be able to donate blankets and scarfs to the homeless shelters downtown. We all know that they are filling up fast and people are hurting. I think that maybe this is what I'm supposed to do. I already have people wanting to give me fabric and even help me to make stuff. All in the name of Giving. It feels really good.
It would also be nice to try to set up a fund for single parents who get brain tumors and have to have surgery. I mean it was hard for us to survive and we couldn't have done it without the help of friends and family. I couldn't imagine being all alone and going through this.
I think that I just found my higher purpose. Now, how to I get this off the ground. How do I make this happen. I have ideas for fundraising, now I just need someone with the brains to help make it happen.
As you can see I am feeling better. My headaches are dull and still there but no more seizures. I'm still not sleeping but I can deal with that. I'm in a better mood. I smile more. I laugh more. I'm seeing the humor in life again and it's rubbing off on my family.
We are going to make it. I am going to make it......

No work for Kelly

2008-11-04T19:03:00.000-08:00

I went to my PCP and he stated that work isn't in the cards for me right now. We need to figure out what is going on with me and my new symptoms. He told me that I was this great patient for years where the worst I has was my yearly sinus infection. I asked him if he has a magic button that would swoop me back to that time. I started crying and he told me that I have a lot on my plate. He reminded me that I didn't ask for this and he asked me about my depression. I was very honest and we are going to try anti-depressants. I hope they work. He also wants me snacking on more fruits and veggies even though I'm not hungry because of the meds. All in all he is going to continue to see me once a month until I'm feeling comfortable with my "new" surroundings. He is a good doctor. I also found out today that the company that I worked for cancelled my medical insurance and didn't even send me my COBRA paperwork....I fixed it but I was so mad. People just don't get it. They just don't understand that they are taking someone elses life into their hands....I hope everyone is doing good.

Today marks 4 years...

2008-11-02T08:00:00.000-08:00

Not for my tumors but for the anniversary of my moms passing. A day where I still wake up with a tear in my eye. I still light 5 candles, on the same candle holder as we did on the day she past. I still feel the same as I did on that day.
I miss her so much. I just want her to give me a hug and hold me. I want her to tell me that everything is going to be OK. I need her so much right now. I need my Mom. Everyone tells me she is here with me, and I know that, but I'm selfish and I want her here.
She would light up a room just by smiling. She was so smart and beautiful and wonderful. She loved unconditionally and gave the same way. She was the best Grandma, I think that was her favorite part of life.
People take for granted how precious life is. They take chances and don't stop to smell the flowers or to watch the waves crash in. They move too fast and worry too much. I'm one of those people. I find that all I really need and all I really want in this world is the love of my family and friends, good health, and Stability. That's it. I need nor want anything more. I don't want a flashy car or house. I don't need fancy clothes. I want my family to be happy where ever we are with what we have. I want my boys to understand and know the joy of giving.

Just some pics guys

2008-10-30T20:05:00.000-07:00

And life goes on. Sorry the last one is a little blurry. The drugs they give you in the hospital are great!!!!!

The ability to heal yourself is within yourself....

2008-10-30T07:37:00.000-07:00

Hmmmmm?????
This statement has always puzzled me. I mean I know I feel better when I feel good about myself. I feel great when the people that I'm surrounded by are happy go lucky. I don't like this complainer person that I've become lately.....
The last couple of days have been a huge eye opener for me. I had a seizure (maybe not according to my Neurologist), had an emotional breakdown, and had an EEG. Now, with the three comes one good, I got accepted into the clinical study that I wanted to. They are going to fly me to Bethesda, MD twice a year starting in January. They will run all kinds of tests at their cost. I will in turn get to take copies to my NS and he can use those. If they find another study that will benefit me they will give me the opportunity to join. This is going to save us tons of money and give me access to worlds of information that I could only dream about obtaining. These doctors are the best of the best, as my NS put it. He actually trained with the head NS in charge at the NINDS. I'm pretty excited about this.
So, things are starting to look up. My meds are upped. I'm sleeping a little more. My mood is getting better my life is going to turn around. Communication is going to be my goal from hear on out. I will voice myself more to my doctors and to my family. They all deserve to know exactly how I feel when I'm feeling it. There's no reason I need to be going through this alone and there's no reason for me to be strong all the time. I have feelings too and I need to talk about them too.

So, many of you know this is my new normal. I will have my symptoms for the rest of my life. They will not get better only funnier (worse). I need to adapt my life to them.
New symptoms since surgery:
*slurred speech (occasionally)
*extreme fatigue
*blank stares/lost in thought with no thoughts
*short term memory loss
*headaches
*burning sensation across forehead
*loss of balance occasionally
*tired(not the same as the fatigue)
I know there's more but I just can't think of it right now. I have been battling a bit of depression too.
I am giving myself the goal to adapt to my new normal and try to enjoy the comedy in it. It's all I can do. I will continue to wake up every morning and tell myself that I love and respect myself just the way I am. I will start my days with morning hugs and kisses from my boys. I will find beauty in every moment.

New information on Seizures....

2008-10-28T11:08:00.000-07:00

Author: FT Mangano, AE McBride, and SJ Schneider
Brain tumors are a common cause of epilepsy in adults. More than one-third of the 35,000 patients per year with newly diagnosed brain tumors develop epileptic seizures. If the tumor involves the cerebral hemispheres, seizures occur in at least 50% of cases.17,18
Some predictive factors for seizure occurrence include:81,83
tumor location in the frontal or parietal regions
evidence of cerebral hemispheric dysfunction
incomplete tumor resection
Any brain tumor, benign or malignant, common or uncommon, can cause seizures.19–23 Those more highly associated with the development of epilepsy include:83,88
melanoma
hemorrhagic lesions
multiple metastases
slowly growing primary tumors
tumors near the Rolandic fissure
Patients with low-grade tumors may be more likely to develop epilepsy, possibly because their longer survival allows more time for seizures to develop.81 One retrospective study found a median interval of 8 weeks between diagnosis of a brain tumor and a first seizure.83
The tumors most often presenting with seizures in adults are:24–30
dysembryoplastic neuroepithelial tumors (DNETs) 90-100
ganglioglioma59
glioblastoma multiforme34
low-grade astrocytoma69
meningioma27
metastatic tumors41
oligodendroglioma70-90
Epilepsy in children is associated with brain tumors less often than in adults. Tumors still must be ruled out, however, even if the child has no neurologic deficits.32–34 If a tumor is diagnosed, up to 46% of these patients may have intractable seizures.32,35,36 Most tumors occur in the temporal or frontal lobes. As in adults, epileptogenic brain tumors in children may be benign or malignant. The most common tumors associated with epilepsy in children are:30,36–38
gangliogliomas
low-grade astrocytomas
DNETs
oligodendrogliomas

OK, so you may be asking why did I post this. My doctor thinks I'm nuts. She doesn't think that I had a seizure at all. She just thinks that this is the way my life is going to go. She did order an EEG for tomorrow morning and then I go back to see her again in two weeks. I asked her if this is going to be the norm for me and she said yes, the new normal. I asked her if I'm looking more at Quality vs Quantity now and she also said yes. So, here I am. Now what? I started crying in her office. I told her I want to go back to work but that I'm scared. I'm scared to have a seizure or to slur my words or forget my way. She asked me if I applied for SSDI yet and I told her yes. She said good. One thing that I need to understand is that Neurologists and Neurosurgeons don't really have personalities. They are extremely smart but no real people skills.
I go in for an EEG tomorrow morning to see if I am having any detectable seizures and then back to my Neurologist in two weeks to see the results. I really don't know what I'm hoping for.

Neurofibromatosis Type 2

2008-10-27T08:07:00.000-07:00

Wikipedia Definition of NF2:
Neurofibromatosis Type II (or "MISME Syndrome", for "Multiple Inherited Schwannomas, Meningiomas, and Ependymomas") is an inherited disease. The main manifestation of the disease is the development of symmetric, non-malignant brain tumours in the region of the cranial nerve VIII, which is the auditory-vestibular nerve that transmits sensory information from the inner ear to the brain. Most people with this condition also experience problems in their eyes. NF II is caused by mutations of the "Merlin" gene, which, it seems, influences the form and movement of cells. The principal treatments consist of neurosurgical removal of the tumors and surgical treatment of the eye lesions. There is no therapy for the underlying disorder of cell function caused by the genetic mutation.

OK, True definition right there, lets take it a step further. They removed four Meningiomas on August 25 so her is that definition from the same source:
Meningiomas are the most common benign tumors of the brain (95% of benign tumors). However they can also be malignant.[1] They arise from the arachnoidal cap cells of the meninges and represent about 15% of all primary brain tumors. They are more common in females than in males (2:1) and have a peak incidence in the sixth and seventh decades. Most cases are sporadic while some are familial. There has been some evidence that persons who have undergone radiation to the scalp are more at risk for developing meningiomas. The most frequent genetic mutations involved in meningiomas are inactivation mutations in the Neurofibromatosis 2 gene (merlin) on chromosome 22q.
A number of studies have linked the slow growing Meningiomas tumor to exposure to certain weed killers, herbicides and pesticides typically used in farming. Women are at a particularly increased risk if they have been exposed to these chemicals for a number of years whereas men with exposure to these chemicals show no increased risk for brain cancer.[2]

Another type of tumor that I have is a Vestibular Schwannoma. Here is the definition for that from Wikipedia:
A schwannoma is a kind of tumor originating from the Schwann cells. The insulating myelin sheath which covers peripheral nerves is produced by the Schwann cells. Hence, one kind of tumor originating from the Schwann cells is called a schwannoma.
Schwannomas are very homogeneous tumors consisting only of Schwann cells. The tumor cells always stay on the outside of the nerve, but the tumor itself may either push the nerve aside and/or up against a bony structure (thereby possibly causing damage). Schwannomas are relatively slow growing. For reasons not yet understood, schwannomas are mostly benign and less than 1% become malignant (degenerate into cancer). This form of cancer is known as malignant peripheral nerve sheath tumour or malignant Schwannoma or neurofibrosarcoma.
Schwannomas can arise from a genetic disorder called neurofibromatosis.
schwannomas can be removed from the nerve but can also come back.

And then you have the information that I found on the NINDS website that states:
What is Neurofibromatosis?The neurofibromatoses are genetic disorders of the nervous system that primarily affect the development and growth of neural (nerve) cell tissues. These disorders cause tumors to grow on nerves and produce other abnormalities such as skin changes and bone deformities. Although many affected persons inherit the disorder, between 30 and 50 percent of new cases arise spontaneously through mutation (change) in an individual's genes. Once this change has taken place, the mutant gene can be passed on to succeeding generations. Scientists have classified the disorders as neurofibromatosis type 1 (NF1) and neurofibromatosis type 2 (NF2). NF1 is the more common type of the neurofibromatoses. In diagnosing NF1, a physician looks for changes in skin appearance, tumors, or bone abnormalities, and/or a parent, sibling, or child with NF1. Symptoms of NF1, particularly those on the skin, are often evident at birth or during infancy and almost always by the time a child is about 10 years old. NF2 is less common. NF2 is characterized by bilateral (occurring on both sides of the body) tumors on the eighth cranial nerve. The tumors cause pressure damage to neighboring nerves. To determine whether an individual has NF2, a physician looks for bilateral eighth nerve tumors and similar signs and symptoms in a parent, sibling, or child. Affected individuals may notice hearing loss as early as the teen years. Other early symptoms may include tinnitus (ringing noise in the ear) and poor balance. Headache, facial pain, or facial numbness, caused by pressure from the tumors, may also occur.
Is there any treatment?
Treatments for both NF1 and NF2 are presently aimed at controlling symptoms. Surgery can help some NF1 bone malformations and remove painful or disfiguring tumors; however, there is a chance that the tumors may grow back and in greater numbers. In the rare instances when tumors become malignant (3 to 5 percent of all cases), treatment may include surgery, radiation, or chemotherapy. For NF2, improved diagnostic technologies, such as MRI, can reveal tumors as small as a few millimeters in diameter, thus allowing early treatment. Surgery to remove tumors completely is one option but may result in hearing loss. Other options include partial removal of tumors, radiation, and if the tumors are not progressing rapidly, the conservative approach of watchful waiting. Genetic testing is available for families with documented cases of NF1 and NF2. New (spontaneous) mutations cannot be confirmed genetically. Prenatal diagnosis of familial NF1 or NF2 is also possible utilizing amniocentesis or chorionic villus sampling procedures.
What is the prognosis?
In most cases, symptoms of NF1 are mild, and patients live normal and productive lives. In some cases, however, NF1 can be severely debilitating. In some cases of NF2, the damage to nearby vital structures, such as other cranial nerves and the brainstem, can be life-threatening.

This last part is what scares me the most. I guess you can do all the research you want, read all of the books, study, learn and still the outcome is that. So, what do I want?
I want to be a part of a study that is going to take a closer look into this disorder and into my family. I want them to study me and to see if I passed it on. I want to help them find a cure so that no one else has to ever go through this. I want to do my part.

I need to show my boys that I gave enough of a damn to give it my all to help find a cure so they didn't have to go through this. I want to show my family how all it takes is one person to say "Hey, this isn't going to get me down".

The anniversary of my mom passing is coming up. This time of year is pretty difficult on all of us without adding the strain of all of this. The doctors don't tell you anything unless you ask the questions. I want so badly to ask is this going to be my normal? Do you foresee me living a long life?

I am researching right now my options for radiation, more surgery, gamma knife, cyber knife etc.... So many options.

First things first, I need to figure out how to pay for my medical premiums. 1100.00 and then a whopping 230.00 a month from here on. A rip off if you ask me, but I can't live without it.

I took two steps back this time

2008-10-26T07:43:00.000-07:00

A seizure.....Yes you heard me right. You know, it doesn't seem fair that this is happening when all I want to do is get better and get back to work. All that I can think of is how scared I am to do this.
I am scared of having a seizure at work. I'm scared that I won't be able to do it. I am scared that I am not myself. I am striving to be normal and I'm finding that just by doing that it is putting more stress on me.
Now, I do have my normal stresses. Bills, Health, Kids, Family, ME. How about one weekend just for me. One weekend where all we do is have fun and laugh and nothing is said or mentioned about my tumors or my disorder. Not a word about me being sick. Not a word about the bills or money or anything. Just me and some close friends and a couple of bottles of wine. We could play cards and have fun. I really don't think this is too much to ask for.
I'm so tired of crying all the time. I'm so tired of worrying whether this next MRI is going to turn out OK or when they "Up" my meds what are the reactions going to be. I'm so tired of living my life around this. I want to start to enjoy myself. I want to smile again.
I don't want to be blamed for our situation anymore and I don't want to blame myself.

As you can see I have taken two steps back. I wasn't anticipating a seizure. I actually felt so good that entire day. I went to visit some old co-workers and came home and cleaned the house. Maybe I just over did it but I felt good. I got all of my medical bills in order and even called them to set up payment arrangements. Then the kids came home from school and Boom!!!! I couldn't talk, I couldn't keep my eyes open. I sat down and slept for about 30 minutes and I felt better. My youngest said I was talking funny.
That night I woke up and I had bit my cheek and tongue.

Today my head hurts again. I'm so tired of this. I'm also tired of being so negative so that needs to change. I am trying to remember by starting and ending my day looking in the mirror saying I love myself. I do find that I do this a lot throughout the day.

I am doing good. I will update everyone on my appointment with the Neurologist on Tuesday. She will let me know about my meds and work and such.

"Good Things Come To Those Who Wait" I love that quote......

One step forward Three steps back

2008-10-21T06:52:00.000-07:00

Did you ever want to just crawl into a hole and disappear? Yesterday was a good day for the most part. I got a lot off my chest and was paying bills and kicking butt and then BOOM!!!! It hits this morning. Bad news.
Now I can take it like any other person but come on....first thing in the morning. I hate that phone call. And to top it off it affects me directly because as a mom we tend to put ourselves last....well guess who's going without their meds. But, at least my boys are fed. I'm ready for a new game plan. A new way for me to tackle this because I can't do it this way anymore.
Why did I have to get this disease. I mean it totally could have been anything else and we could be blaming it on that right now and not on me and my lack of working or lack of contributing or lack of whatever. I'm so sick of it. It's always my fault, or my tumors.
When do we start taking responsibility for our own actions and just say OK it's because of us not because of my sickness or anything else. I didn't cause this by myself, it was a joint effort. All this time I have been so worried about my family and how they would react to my illness I should have just kept it to myself and let it run it's coarse. At least then we couldn't blame it on that.
Blame is wrong in any sense of the meaning. It hurts. I didn't do this intentionally. I hurt everyday because my children have to suffer but they don't know it. I'm home everyday and I spend so much time with them because I want to see everything about them. I want to watch them grow and don't want to miss a thing. They do get sick of me though.
Today I am going to try Yoga. I am going to try to meditate and come up with a solution to my problem.
Have a good day everyone!

I Need to get Control back quick

2008-10-20T11:43:00.000-07:00

I need to regain control of my life. It's my body. I tell it what to do and I tell it whether it can be sick or not. I tell it if it can be tired or if it's going to have a bad day. Mind over matter.

Life is all about choices....or so I thought.....
I did not chose this....I don't want it....Who wants brain tumors? If anyone answered yes I can give you some of mine, I have plenty.

ARRRRGGGGGHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I just want to scream.........

I want to be happy and positive like I was before surgery. I want to have that feeling again like I have control over what is going on with my body. I want to heal and be normal and have a doctor tell me that I am healed....... I want to be the miracle case. I want to be the one who changes the coarse of history so that my children don't have to repeat it. I don't want them to have this or go through it.
Matthew had another headache today. Probably caused by playing too many video games but it scares the crap out of me. I could, potentially, pass this on to my boys. My legacy to them is brain tumors. Oh and lets not forget the added seizures, numbness, paralyses, and possible death. WOW! What a great mom I am. This is truly what is killing me.
I know in my heart that I didn't do this intentionally. I never asked for this, nor would I wish this on my worst enemy. I just can't get it out of my head. Every time I look at my boys I think about it. I wonder if they could have this. If I passed it on to them. I'm really scared.
I'm scared to die before seeing them grow up, before growing old. I look forward to seeing my mom and grandpa in heaven don't get me wrong but I am scared to have someone else raise my boys. I had them, they are my responsibility, they are my life.
I guess that if I want to get the control back then I need to start by putting one foot in front of the other. I need to get out there and start trying to rehabilitate myself so that I can start working again. I need to volunteer and be productive. I need to help find a cure for this disease. I need those doctors to study me so they can find a cure. I want to help so that my boys have a chance, so my nieces and nephew have a chance. So that everyone who is diagnosed with this has a chance, including me.
I may not sound OK but I am. I wake up and take it one day at a time. I thank God for giving me one more day. I look around and I am thankful. I am trying to stay as strong as possible for my family. I think that I need someone to be strong for me sometimes.

The list I wish I had before surgery

2008-10-17T07:36:00.000-07:00

Thanks to all of my wonderful friends at meningiomamommas.org we have come up with the ultimate caregiver list. I wish that I had this before surgery.
Here Goes:

Sandy posted.....
*Please understand if I say or do something strange, I am not thinking clearly yet.
*Do not constantly remind me of what I can or cannot do. I had surgery, but did not revert back to my childhood.
*Please help me with my meds, as I might not be able to read the small print on the bottle yet.
*If you would make a meal for me, I'd love to eat somebody elses cooking.
*If I am wandering the house at 2 a.m. please don't ask me if I shouldn't be in bed. I'd love to be, but sleep comes harder for me now.
*Occasionally get me out of the house, even if it is just a ride to the Dairy Queen for a banana split.
*Let me work the television remote for a while.
*Offer to do the laundry or wash the dishes or change the bed sheets as I don't have a lot of energy right now.
*Take me to followup appointments with the doctors and take notes for me, as the memory isn't the best right now.
*Just help me get through this and I will be appreciative forever.
*Have patience.

Goldylocks added.......
* please make a chart of all my meds and help me remember to take them
* take me places, even if it is just for a car ride. cabin fever is awful on the recovery process
* do more around the house, cooking, cleaning, kids, etc.

Tammy added.......
"Go ahead and give me a call, I welcome phone calls."
"Make that meal if you want, it won't go to waste."
"I don't mind talking about my brain tumor, it even has a name."
"Let me tell you about my steroid highs."
"I know I might be over-doing it, but it helps to do things."
"Sometimes it just helps to vent."
"Tell me about work, and get my mind off things right now."

Carol you and I are one in the same......
Pleeeeeeeeaaaase, DON'T hover over me,I know you mean well, but it annoys ME. RESPECT MY PRIVACY. If I want to be left alone, leave me alone until I show up in the kitchen, again.Ignore my mood swings, the doctor messes around with my brain. It's nothing personal, it's my lack of inhabit ion.Thank You so much for giving me your time. I'll never forget it.

Diane added......
Take time for yourself. It will do us both good.Rent a movie that we will both enjoy and let's watch it together. Forgive me if I doze off.Talk to me about normal things--kids, work, sports, politics--anything that takes my mind off my worries.Stay positive even when I'm not. Attitudes are contagious.Make plans with me for something in the future whether it is dinner and a movie or a weekend trip to a favorite spot.

Kathy who's mother is the one with the M stated.....
Encourage and point out all the triumphs and victories, no matter how small or seemingly insignificant.Routines are good, but be flexible for much needed rest time.Schedule time for yourself. Think of yourself as a pitcher of water, if you keep pouring out to someone else it'll empty soon - go off and fill yourself up as much as possible!Remember, no matter how difficult and frustrating it might feel for you at times, the patient does not WANT or CHOOSE to be dependent. They are dealing with physical discomforts, emotional highs and lows, beaten down spirits, feeling completely out of control, and in some cases, the residue and after effects of months of anxiety, stress and fear.

Don't Look Back....ME....posted...
*Please don't point out that we are in debt up to our ears and beyond every five seconds because of my surgery. It makes me feel guilty and is making me depressed.
*Try to remember that I am the one who had surgery and occasionally I am the one who needs a shoulder to lean on and a strong arm to lead the way.
*I may not remember everything but I am not a child and it's still me under here. I am still fully able to take care of things.
*I am still able to make decisions and when you go behind my back because you "don't want to bother me" it hurts.
*Please know that I'm not going to break. I like to be cuddled and held. I want to be hugged and kissed and my hand held.

We all have a lot on our plates and are dealing with them in different ways. Some of us want to be held, some of us want to be left alone. I would love to be held but I can't stand the smell of smoke and my husband smokes right now. It doesn't mean that I don't love him or I'm not attracted to him. The meds that I am on make me sick enough without adding to them.

I'm trying to figure out why I'm feeling so bad all of the time. I don't have all of the answers but this does have a lot to do with it. I'm not the strong one that I though I was. I need a shoulder every now and then. I can't stand the fact that all I do every day is pick up and clean after everyone else. I'm a glorified janitor. I have lost me and all that is me. I have no opinion or say in anything anymore. If I want to watch one of my shows everyone leaves the room. If I leave the room I get 20 questions.
I cook, clean, and take care of the kids...that's it. I need to go back to work and find me because I sure as hell don't like who I am becoming....I don't like this person at all. I can't fake happy forever......

I called the doctor this week to see about going back to work and he doesn't think it's a good idea. I think that only one other person agrees with him....my husband. I called my old work and they said that yes she will find a spot for me when I have a "full release" to work. I'm not sure when that's going to happen.

My Legacy.....Is there anyone out there?

2008-10-16T08:27:00.000-07:00

Do I have one? I'm supposed to be in the prime of my life. I'm supposed to be enjoying myself and my kids. I want to plan family vacations and plan for Christmas Break. I want to ENJOY myself. So, why can't I?
I am fighting a war in my head right now. A depression of will, Man vs beast. This beast is now taking over my life....my joys....my happiness. It is bleeding over into my children's lives. What good am I right now? I can't work, I'm fighting to survive, I have nothing to leave my children in case something happens to me and I don't have a clear plan on what to do. I am stuck in the middle of a twisting tornado and it is finally coming to a head that this is almost too much to bear.
I need to find someone to write my story for my boys and my family. Maybe it will help someone else going through this. How many people can actually say they have more than 15-20 brain tumors? And after all of that, how many of them can still walk and talk? I'm not sure why I'm complaining. I want my life to be simple, plain, no frills. I want to enjoy the sunrises and sunsets and the sound of the trees blowing in the wind. I want to talk to my husband without snapping or having a snide comment or yelling. I want to laugh until I cry with my kids and not just cry for them. I want to be me again. The fun loving energetic crafty girl who love to run through sprinklers and play hide and go seek. The one who used to jump in the car with the kids for no reason and just drive to the beach or the falls. I want my smile back. I'm tired of worrying all the time and I'm tired of feeling like everything is my fault because I got sick. Tired of feeling like I just want to run away......
My family was just here. My aunt and uncle. I tried to put on a happy face for them. I tried to show them that I was OK, that we were OK. They must think that I am completely losing it. All I wanted to do was enjoy the time I had with them but I was constantly reminded of our money problems and all of the bad shit going on at the house. WHY???? Why couldn't I just be left to enjoy my favorite Uncle. Why couldn't I be left to be normal for once. Step outside for a bit. Forget about all of the crap for just one minute. Remember what it was like to be just me, Kelly, not Kelly with the brain tumors who is causing our family to spiral down into a financial explosion. Yes, in the same sentence as all of our bill and repairs and everything else comes Kelly's illness, disease, etc.....
It's no wonder all I want to do is sleep anymore. It's no wonder I cry all the time and its no wonder that this is the only place that I feel I am able to let all of my feeling out to.

On a lighter note, I was given a link to a study done by some place overseas and it found that this organic stuff called Propolis BIO 30 has been shown to shrink tumors in the brain caused by NF2. Pretty cool. I e-mailed them in hopes that I can get the information back and be able to purchase it. It's derived from Bee Hives and Plant extracts and is sold in New Zealand. Wish me luck as I am on my way to a better place.

It does make me feel better to get everything out on here. I am normally a pretty positive person and I don't cry in front of my boys. I am off to tackle the house today and laundry. I want to venture up to JoAnn Fabrics and get some Halloween Decorations with my gift card. I have parent teacher conferences today and a date with my boys tonight to make Ghoulishly delicious cake. Hopefully we are able to make some decorations too...... Thanks for listening to all. I am OK just to let you know. If I didn't get it all out I wouldn't be OK..... I do want to find someone to write my story....

I WANT MY LIFE BACK

2008-10-14T06:49:00.000-07:00

And not just what I thought was my life before brain tumors but me....Kelly. I'm so tired all the time and I just want to be the lively energetic me. I'm tired of staying strong for everyone else and keeping a "happy face" for people and then when I need that fricken shoulder I don't get it.
What about me????
4 years ago next month my mom past away. This time of year already sucks for me. Not to mention the fact that I'm trying my damnedest to keep a happy face for my kids and everything just keeps falling on me like an avalanche. I'm so tired all the time. All I want to do is sleep. I can't blame everything on my tumors, I know, but I wish that just once something could come easy. One time, we could wake up and not have to worry about bills, broken washer, school clothes, electric bills, medical insurance, prescriptions, groceries, colds, LIFE. How strong does one person need to be before they just say stop and throw in the towel? When do I say when?
I don't like to complain. I really don't. I'm just tired. I'm tired of not being listened to. I'm tired of being put on the back burner and I'm tired of having something wrong with me. God needs to give this disease to someone who has the money to fight it. This is truly going to tear my family apart.

So, what prompted all of my negativity???? A bad dream, horrible, I saw my own death. And then all I could think about was my medical insurance ending and no way to get new insurance. I woke up in a cold sweat crying when I saw my kids crying.
I hate this!!!!! I hate this NF2.... I hate the FUCKING brain tumors and if I could have my way they could go somewhere else cause they sure aren't welcome here anymore........

I still have these stupid tumors

2008-10-09T05:33:00.000-07:00

They don't just go away, although I wish they did. I still get headaches. I still get tired. I still wear out easily and I'm still recovering.....shit!!!! It's only been 6 weeks and 2 days...but who's counting.... I am so frustrated with this whole healing process. I'm frustrated with the dizzy spells and the constant headaches and not feeling whole.
To top everything else off I have a cold. I'm not the only one in the house with a cold so my cold doesn't matter. Derek is stuck on the couch dying. Timmy is hacking in the bedroom and I'm cooking and cleaning and doing laundry and today was informed that I needed to make a doctors appointment because he couldn't deal with it. Apparently the nurses there are stupid and he can't deal with them right now. So, leave it to me to deal with????? Whatever....
I haven't been sleeping. I'm so tired. My neck and back spasm all the time. I'm trying to keep a strong face and a happy one but sometimes it's hard. I try to be superwoman but I'm not. I have to stay strong for my boys......for myself.....
OK...Pity Party over... I really hate that I vent like I do. So what if I have brain tumors... So what if I have a little cold and headache...I'm still alive and I'm still here.
A really good friend of mine sent me a smile. Yes I received it in the mail. A card, one of the talking ones and it's that lady from Saturday night live and she's going off about Constipation, zits, bloating...etc and I almost peed my pants I was laughing so hard. I needed that. He has got to be one of my best friends ever. To be able to put up with me is not an easy task.....To make me smile and almost pee my pants.....PRICELESS!!!!!

Where are my Shoes??????

2008-10-05T08:48:00.000-07:00

Among everything else...I can't find my shoes. Not my tennis shoes or my flip flops but my loafers. The easy to slip on, non-slip soles, cute, comfy shoes. We moved and they disappeared. Along with my shoes leaving town my waistline left too. Yep, I've gained weight and can't seem to lose it.

We are heading into the rainy season and walking the neighborhood is getting harder and harder. I can't risk getting sick but I can't risk gaining anymore weight. Yesterday Derek took me to the mall so I could buy two pairs of pants that fit. I could have cried. I still looked damn good but I'm up two sizes. This is not Kelly at her best.

I'm trying to find a treadmill on craigslist for cheep that works. That way I can work out inside and not gain anymore. Maybe when I lose the weight I will find my shoes....It could happen....

OK, I've complained enough about that. I just had major surgery and quit smoking. I was a tad overweight to begin with and that didn't help matters either. I will get over this and make it better. I will lose the weight and get back into my old clothes. The only thing is that we will have to buy new clothes again because my old clothes are old and holy and it's time to trash them. Lucky Me!!!!

I had a doctors appointment on Friday. He just wanted to make sure that my Migraines were OK and under control. He also was curious as to why I wasn't back at work. When I told him he raised an eyebrow and then said OK. I don't get it. He did tell me to come back and see him in another month and then I see the NS a month from then. Hopefully after that I will be back to work and going strong, or at least have an idea of a game plan.

Derek is home right now. He gave me a bracelet that has a silver heart on it and three charms that say Live, Laugh, Love. It is so sweet. We kind of lost our way for a second there. It wasn't fun but we are talking now and on the same page again. We love each other so much that it hurts us both when we don't communicate. Now we are talking about everything.

Well, I'm off to tackle my Sunday. I am teaching the boys how to do laundry and we have to get ready for the week. My Aunt and Uncle are coming soon and I need to get ready for them. Have a great Sunday everyone!!!!

What a weekend...

2008-09-30T08:10:00.000-07:00

I love it when I can feel like I don't have this disorder at all. I felt that way for most of the weekend.
It all started with me going bowling with my good friend Kristen. I had so much fun and laughed soooo hard. I didn't bowl very well but I had an incredible time. I had two goals for the night:
1. Don't fall down
2. Have fun
I achieved both of them. What an incredible feeling to just be normal even for a night. The only thing I would have changed was the one guy Kevin kept asking me questions about my surgery and recovery. I finally said "Dude, I'm here aren't I". I do have to say that drunk idiots can be quite comical when they start falling for no reason at all. He fell of the couch in slow motion. I laughed so hard I almost peed my pants....

After such a wonderful night of bowling you would think the excitement was over....but no! My wonderful brother and his family came and picked me up and got me out of my house for the weekend. They took me for a drive in the Gorge and we hiked to one of the waterfalls. It wasn't that far but I was sure glad I made it. We stopped by a brewery called Edgefield and listened to live music and drank wine ( a whole bottle). That place was so cool. Then we had smores. What a wonderful weekend.
I was able to just be Kelly. Not Kelly with the brain tumors. I found my smile again and have more energy. I am ready to tackle the world.
Today I need to scrub my kitchen floors and do some laundry. I also need to go pick up the rest of my prescription and call the doctor on the other one. How any company can charge 199.00 for a prescription is beyond me. It's bad enough that my Migraine meds are 30.00 and my other ones are 60.00. I actually need these to stay mostly pain free and they are making it really hard on me to survive when I'm spending 2 to 300 dollars a month on prescriptions.
I'm also going to call the doctor about the pain in my neck and back. This is actually affecting my sleep and my mobility. I thought I needed sleep aid but really all I need is a muscle relaxer to ease the spasms in my neck and back muscles. They cut into my neck muscles and now I have to keep stretching them and rubbing them just to keep them from hurting. I am such an complainer......
Lots to do today...I am going to do what I can to ensure everything gets done....

My Rant

2008-09-26T15:40:00.000-07:00

Yes, we all tend to rant and rave about things or issues that bug us. Well, I have one. I'm tired of people asking me how I am and then going off on their latest cold symptoms acting like they are dying....And expecting sympathy from me. Well, I'll trade you!!!! is generally my response.
I'm probably just bored and bitter and that's why I'm feeling the way I am. I'm usually pretty sympathetic but a cold....come on....
I have another issue that happened that I can't talk about on here. Maybe someday but not today. I just want to be normal more than anything else. I don't want to be a burden on anyone. I just want to take care of everything on my own and I can't. I'm being torn in so many directions that sooner or later I'm going to break. Oh well, that's my little bitch and now I'm done.
The boys are off to their dads. He is taking them to their aunts house which isn't really the greatest place to be. Oh well, I haven't been there in a while maybe it's better now.
You know, I really don't like to complain about things but I'm sure glad I started this blog. I feel so much better now. Sometimes it helps to just get it all off of your chest.
Have a great weekend everyone.
Next appointment with Neurologist is Monday. I will update then.

So, I have brain tumors....What's your excuse???

2008-09-23T18:59:00.000-07:00

I really need to get a shirt or a hat that says that. I blame almost everything on my tumors. Why not.... most of the time it gets a laugh.
Yesterday I went outside to get some chicken from the freezer in the garage. Normally this wouldn't be a big ordeal but this time was different. You see, the door to the garage has a funky lock on it where it's unlocked on the inside and locked on the outside. Yes, you guessed it. I locked myself out.
Immediately I started crying. Not because I wanted to but because one of the side effects to the surgery and coming off the steroid is over active emotions. Once I start crying I can't stop. Thank God I had my cell phone. I called my friends and they immediately came over. They were so good to me. They tried to break into my house and it didn't work. That was sure comforting. Then we called the locksmith.
65.00 and 30 seconds later I was in my house. I was locked out for 2 hours. I'm laughing about it now and so is everyone else.
Today I had my appointment with SSI. I applied for SSDI which is disability benefits. The gal that was working with me was very helpful and at the end of a 2 hour meeting she said there was no reason for me to be denied. She asked me so many questions and was able to see that YES I have memory loss. She told me that it was good that I was so prepared and brought all my medical records and had all of their phone numbers and addresses. She also told me it wasn't a big deal that I didn't have my birth certificate. They are passing some new rules that make it so they don't require them anymore.
She was, to say the least, great. She answered my questions, gave me a few tips, and was very pleasant. What I didn't like was the lighting. I'm still taking medications to get rid of this nifty migraine that I have now. I hate headaches.
Other than the headache everything is going good. Life is good and I'm learning to live with the fact that I need to take the time to heal. I need to allow myself to relax and heal. If I say this out loud enough then I won't allow myself to get that cooped up feeling. It's not so bad because I have a nice house in a nice neighborhood and great kids. My family and friends are the best. I have a friend who calls me to take my mind off of things. He usually makes me laugh and always makes me smile. I have another friend who picked me up for ice cream and brought me Minnie mouse ears. She has also taken time out of her busy day to help me out. I have another friend who helped me move. She was one of the hardest workers I've ever seen.
I am Blessed! To live is a gift....And I will never forget it.

At Home Mom Blues

2008-09-19T06:21:00.000-07:00

I am going nuts staying at home and trying to keep myself occupied. I clean and cook and do the laundry. I ride my kids about homework and picking up after themselves. I just don't know what to do to keep myself busy.
I knit as much as I can. I talk to myself and the dog. I log onto the computer and to my Meningioma Mommas board and reply to all of the posts. I am so used to working that I miss it even though I didn't like it all that much. So, what now?

I filled out the form to volunteer at the boys' school. I get my driving privileges back in 35 days. That will help tremendously. I have a meeting at the SSI office on Monday. Keep your fingers crossed for me.

Then after saying all of this I wonder why am I complaining. I finally get to be a huge positive part of my boys' life. I'm ALIVE!!!! I survived brain surgery. Not just Brain surgery but major brain surgery. Two incisions on my scull one 8 1/2 inches and the other 4 inches. I also had 49 staples and two other small incisions where the drainage tubes were. Yes Pictures are coming. We took pics of the incision site (didn't look that bad). I actually reacted very well to the surgery. We also took pics of me in recovery. I looked pale but otherwise I was smiling.

I am trying to make the most of this. I am thankful for all of the gifts in my life. I wouldn't trade this life for anything. I am blessed.

With all of that said here is my new short term goal list:

1. Be able to walk around the entire block by myself
2. Be able to read a book again
3. lose 50 lbs by this time next year
4. Be a more positive person
5. Take time to smell the roses (slow down and enjoy life)

I'm sure that I will add to this list as I continue to add to my long term goal list. I will continue to thank God for all of the gifts in my life as well as giving me one more day. I will also try to find a new hobby or maybe a new career that doesn't involve staring at the computer all day.

I'm done venting now.... To all who read this Have a wonderful, positive day!

Surgery went well

2008-09-16T10:05:00.001-07:00

I had my surgery on 8/25/08. It was 7 hours of hell for my family and friends but I really don't remember any of it. I am still recovering and taking it one day at a time.
Things I had to deal with after surgery:
Noisy ICU
Still wasn't sleeping
Swelling of my face and body from steroids
Wasn't able to walk well
49 staples to my head
Once home from the hospital....
I had pain and lack of sleep from rolling onto incision site
One major migraine which put me in the hospital
Slight depression due to the fact that I am stuck in this house
Can't seem to do anything without being tired
I have a hard time focusing on the computer and TV.
I can't read a book yet and this sucks!!!!!

So, I'm a little down on myself. I should be looking at it like Holy Shit! I just survived brain surgery. I should be thanking my lucky stars...which I do but why do I feel so down? I can't seem to figure it out.
All is going good. I got my staples out and nearly broke Derek's finger doing it. I am off nearly all my meds except for the occasional pain med. I think they are going to put me back on Topomax for the migraines though.
I got a letter from SSI stating that I was denied benefits due to the fact that I didn't apply for them. Hmmmmmm, my appointment isn't until September 23rd and they are supposed to help me fill out the forms then. How can I be denied for this.
I'm just full of so much emotion right now. I cry at everything and don't know why. I can't sleep right or eat right. I'm even having to force myself to smile.... I just want to be normal and back to my old self.

I've always been able to get myself out of this funk but it feels as if this is going to take some work. I hope it ends soon. Sorry I'm not my normal upbeat self but I strive to be there soon. I just need to vent and this is the only way I can seem to do it.

I am thankful for my wonderful surgery and quick recovery. I am also very thankful for my family and friends. Everyone has been so quick to help me out and put my care top on their list. I am really thankful that I survived and that everything went so well. I am thankful to be alive.....

Amazing Thoughts!

2008-08-23T07:42:00.000-07:00

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.

Explosion

2008-08-22T06:43:00.000-07:00

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.

Word Vomet

2008-08-21T05:18:00.000-07:00

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.

Surgery Date

2008-08-20T14:56:00.001-07:00

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!!!!

2008-08-14T04:33:00.000-07:00

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???

2008-08-13T05:36:00.000-07:00

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

2008-08-11T09:04:00.000-07:00

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

2008-08-10T05:32:00.000-07:00

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

2008-08-09T06:49:00.000-07:00

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!!!!!

2008-08-08T05:44:00.000-07:00

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

Still Waiting!

2008-08-05T07:03:00.000-07:00

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......

Game Plan Changed

2008-08-01T22:44:00.000-07:00

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!!!!! :)

Steroids!!!!! YUK!!!!

2008-07-30T19:34:00.000-07:00

I'm on steroids now and they make me jittery and tired and emotional and give me the hiccups. Wow! I think that I have a lot of serious soul searching to do. I am scared shitless right now and I couldn't function at work and I want to. I found out that I have been a butt with a capital B to my co-workers and it just isn't me. I know I have a lot on my plate but it isn't their responsibility to pick up after my mistakes. I just couldn't take the fact that me....the one who is so meticulous in her jobs and thrives on adversity and stress in the work place can't handle the day to day tasks. I'm losing it and this is not my tumors...... It may be a bi-product but I would classify it more along the lines of too much to deal with and maybe a little depression to boot. I'm scared and nervous all the time.
When do I get that strength that my mom showed me and everyone else. She was so amazing. She took everything in stride and rolled with it. She knew all along that the cancer wasn't going to get better but kept fighting it anyway. She was dancing at my brothers wedding in September. Going out to eat and to the beach with me in October and in the hospital the last time October 29 and then released October 30th to come home. There was nothing more the doctors could do for her. She was awake for her birthday on October 31st and slipped into a coma right after. She passed away on November 2nd. She tried so hard to be strong right to the end. She was so incredible. I need that right now. I need my mom. I need her to tell me to snap out of it. So you have brain tumors...now what are you going to do to fix it. I need her to hug me and tell me everything is going to be OK.....
Again, I'm on Steroids and being overly emotional is one of the side effects. I can't seem to stop crying unless I decide to scrub something or try to sleep. I've been writing down all of my questions for tomorrow and with every new question brings another question. I have so many. I really want to know why but I think I already know the answer to that.
You see, all my life my mom told me that I was the strongest woman she knew. When in fact that is the legacy in my family. My grandma, who is still alive, survived cancer...not just any cancer but Ovarian Cancer and Breast Cancer. Now, breast cancer is easily treatable and less evasive. Not easier to take by any means but it is treatable. Ovarian Cancer is a killer. They don't have a cure nor do they know a path or a reason. They treat symptomatically and go from there. The stories that I have heard about my grandma surviving this are incredible. They all go back to God and Faith. Prayers being answered and the faith that it will happen. She did survive. A miracle to say the least.
My Mom battled Cervical cancer, breast cancer and Ovarian Cancer twice. She always had a smile on her face. She had a full mastectomy, hysterectomy and many doses of Chemotherapy. She never faltered. To Live is a Gift she would always tell us. Don't look back. Keep moving forward. My brother and her used to pass this one to each other "When nothing is sure, anything is possible!"
My Aunt who has in the past been dealt the raw end of the deal. Moved from place to place with her company. She always started "new adventures" and found a way to include me in them. She battled Endometriosis most of her adult life. Now, for those of you who don't know what that is. Take your normal 7 day period. Multiply the cramps and everything else by 100 and that's what you get. She went through surgery to remove cysts caused from this and scar tissue. All she ever wanted was to get married some day and have children of her own which was shattered when they finally told her that she needed to have a hysterectomy. She did it with a smile on her face only months before her wedding. She is so strong and has been like a mom to me as well.
Then there is me. Following in the footsteps of a family whose women are strong willed and spirited. I may have lost that for a bit but I will find it again. I really need to think about them. How strong they were through everything and how they made it through each day by putting one foot in front of the other.
To Live is a Gift, and every ordinary moment is filled with beauty when seen through the eyes of the heart.

Wants and Wishes

2008-07-30T05:44:00.001-07:00

I had all of my tests on Monday...WOW!!! what a day! MRI, CT and Bone scan. I didn't think you could actually be sore from those but I feel like I've been hit by a MAC truck. Life has sure thrown me a few twists and turns hasn't it. Well, here's how it went.
I had my tests and then called my NS the next morning just like I was supposed to. I must have been feeling a bit down with the added numbness and weakness and all over fatigue because I just off loaded on him. I told him that I was tired of being in the dark on this whole thing and I needed to know what the plan of action was for treatment. I told him what was going on with me and how my symptoms were increasing and how I was just plain tired of being tired. He read the Dr.'s report to me and the big "S" word came out....SURGERY. I'm not sure how I felt about that. In a way I'm relieved but also I'm scared shitless. After all this is my head we are talking about. I mean you can't live without it.....There is no transplant for it but I wonder if Julia Roberts would mind giving me hers.....Just kidding.
So, Thursday I see my NS about Surgery on one tumor and Treatment on the rest. I'm not sure what I will find out with the rest of the scans or what the full results will be but I know I'm in good hands and I know my mom is giving me strength.
Now I find myself wondering what is it that I want to achieve in life? What do I want in life? I have so many things that I haven't seen or done and I want to make a list so here goes....
1. Survive Brain Surgery
2. Own a House
3. Take that Honeymoon with Derek to Hawaii
4. Open my coffee shop cafe with my sister-in-law Laura
5. Watch my boys grow up
6. See my grand kids
7. Visit Michigan again
8. Hike Champion Lakes again just to say I did it....Uncle Jim here I come
9. Take 3 vacations a year....One family vacation to Idaho or Michigan ....One to Cali and One just me and my hubby
10. Plant a veggie garden in my own yard
11. grow grey hair only to dye it later
12. Go across country with Derek on the Truck

I could write this list forever and it would go on and on. I have so many places I want to see and so much I want to do. It's not an option to stop. So, right now I will put one foot in front of the other and keep on keeping on. Don't Look Back..... I'm Making Lemonade.... Life is now full of Possibilities...... Funny how it took a brain tumor to point that out to me....

New Tests

2008-07-28T06:22:00.000-07:00

OK, so today is the actual day of all of my tests. I have a really good friend who is taking me down to Portland to get them done. These are the same people who have been there for me no matter what. I am hoping to get some answers with this. I mean really it's hard enough to deal with You have a Brain Tumor....Let alone greater than 10. Add to that added lessons and the list just keeps going..... Now, I'm not giving into this I just want some answerer's and normalcy in my life....So here I go. One step in reclaiming my life.....The first step.....

New Game Plan

2008-07-24T07:15:00.000-07:00

I know that no one reads this. I'm ok with that because I am writing it purely for me. I am trying to get into this NS who is supposed to be the best. I have found in the last week that it's time to start getting serious about taking the tumor out in the back of my head. I know that this would be a good thing but scary also. I just don't know how to feel but numb.
My boys are oblivious to everything which is good. They know what I have and they know that I am fighting it the best way that I know how. They are helping me to make good food choices and in the process making great choices for themselves. We alternate nights for meal planning. Matthews night was grilled cheese with Tomatoe soup and fresh steamed broccoli. Timothy's meal was Mac and Cheese with steamed carrots and hot dogs. Now, I know those aren't the best meals but the fact that they incorporated veggies into it helps. They also went to the grocery store with me and picked out fruits for snacks and baked crackers. Along with this I treated them to some low fat ice cream treats. They are loving it. I just hope that my energy level comes back soon.
Tonight on the menue is Turkey meat loaf with corn on the cob and probably red potatoes. It just depends on how tired I am when I get home from work.
My Game Plan
To get my tests on Monday
Get a new NS that will listen to me and actually read and study my tests
Get Healthy
Start Exercising....

This is just to start and hopefully it works. I like the fact that the kids are interested in this as well. They are so helpful and I am luck to have them in my life. My hubby is completely supportive of me and my cutting back at work. He is worried that I am doing too much and I am too. He knows I don't have the energy to pull a full work week anymore. I will write more later because I need to get ready for work.....

Today I am Thankful

2008-07-19T07:41:00.000-07:00

I try to start each day thanking God for the gifts that he has given me. I have my boys, my family, friends, and my life. I have been given a really good life.
This morning I was thinking back to when I worked at Starbucks. I loved giving free samples of the latest treats and this woman came up and took one. She smiled and politely said thank you. A few minutes later she started choking on the sweet treat. I quickly grabbed a cup of water without thinking and brought it to her. I rubbed her back and talked to her until she was able to get it down. Now, she wasn't choking in the sense that it blocked all airways but more like when you swallow wrong. When she composed herself she apologized to me and said that she knew better than to take it and it was her own fault. I said, I don't understand. She told me she has MS and that it causes her to have trouble swallowing. She saw the treat and just had to have one. My first response was "Did you get to taste it?" She said yes and that she would go through it all over again just to taste it again. She Thanked me again and left smiling.
What a great attitude to have. I can understand that it could have been an embarrassing moment for her. God knows how many people have seen me trip over my feet or walk into walls and until now I only thought I was clumsy. OK, so I am clumsy. I've forgot the milk in the car and put the butter in the pantry. I've left my Gucci sunglasses at the counter at Starbucks and after spending $5.00 on a drink left that there too. I've gotten in the car and backed it out and forgot where I was going. I got half way to work one day before I realized I forgot to put my make-up on. Just a few things that go along with this whole Meningioma thing.
I want to adopt the idea that I would do it again. I might have fallen down but I get right back up again. It's only butter and milk and I can get more. If I forget where I'm heading then why not just go somewhere fun until I figure it out. I'm learning to roll with the punches. This is the start of a good day and I'm taking it for all that it is.
Today I am thankful for beautiful sleeping children in dreamland. So peaceful and I can't believe that I created them.

Pitty Party For One

2008-07-16T20:55:00.000-07:00

Ok....So I'm not as strong as I would like to be. I try. I want to be able to cry sometimes and shit, I am scared. Who wouldn't be. I am currently housing numerous foreign objects in my head and I don't want anything to do with it. I want it to just go away. I want to go back to normal.
I don't even think I know what is normal anymore.
My pitty party is over. I'm better. My boys and I are hanging out and making dinner. We are having weiner wraps and tator tots. mmmmmmmmmm How wonderful it is to be a kid.
Now, I know it really doesn't make a difference but I splurged and bought the Oscar Mayer Cheese dogs. We wrapped them in crossant dough and are currently baking them. My mouth is already watering.
In the background I can hear my boys. Timmy is playing with the dog and Matty is playing with his toy tank. Loud and annoying but such a beautiful sound. I love their smiles and hearing them laugh. Their hugs and kisses make me melt everytime.
I know I'm rambling and I should probably tell you why I had a Pitty party for one today. I saw Dr. Palla today and she was great. She is a straight shooter. The first time I saw her she scared the shit out of me. I'm not sure if it was her or the fact that she was saying TUMORS. Anyways, I was in shock. She is brutally honest and now I respect that. She answered so many of my questions and even told me that until we actually biopsy the tumors we don't really know what they are. Again, scared.... She also said it's time to start thinking about the genetic testing for the Neurofibromatosis type 2. This is the only explanation the doctors have for why I have so many tumors and leisions. This is hereditery....CRAP....One more thing I can pass on to my children. Again, Scared...this actually scared me even more than hearing that I had NF2 in the first place. No mother wants to give this or anything else like this to their children. Time to be Pro-active and start taking control of my own health and medical treatment. It is also time for me to make some serious changes in my life.

Same ol' Same ol'

2008-07-16T05:44:00.000-07:00

My days actually go just like everyone elses if you subtract the added doctors visits and tests. Yesterday I dropped my cat off at the vet to get four teeth extracted and shaved. He is a 16 lb rescue cat that has some issues from being malnourished for four years. We have had him for a year and are spending so much just to get him healthy. It's totally worth it. He is the biggest lover and one of the best additions to our family. He is now totally bald because we had to shave him to. He almost looks like a poodle. At least all of the mats are gone and he won't be getting any more abscessed teeth.
After the vet my boys came home. They have been gone for a week. I miss them so much when the go to their dads. They had so much energy and I didn't know what to do with it all. We danced and played little Simon Says games. I know they are a little old for that but we were laughing and having fun. I also had my niece Kayla over who is the biggest helper of them all. Two of the grand kids received my moms heart, Kayla and Matthew. They are the most giving unconditional kids I know. You can see it in their eyes and feel it in their hugs. I'm not saying that the other kids aren't special in their own way. It's like passing down certain traits a leg twitch or someones laughter.
After some long awaited play and hugs...I got my hair done. The first time in almost two years. I felt so good. For two hours it was about me and being pampered. I talked to my hair dresser about the possibility of having surgery and how squeamish is her stomach. She said she would have no problems teaching me how to do my hair after surgery. She also told me that it wouldn't be a problem since I have so much of it. She is the best hair dresser ever and I would never go to anyone else. She told me not to worry about it.
After that I came home, took the kids swimming, took Kayla home, got the cat from the vet, made dinner, cleaned up, and went to bed.....Pretty full day.
I felt really productive the last two days. Some days I'm so tired that I can't seem to get off the couch or out of the house. Other days it's the opposite. I want to see and do everything. I make lists. I don't get mad at myself for not being able to finish something today because I can do it tomorrow. What I do know is that I'm not depressed. This is real and what I have been experiencing for the past few years is real. Being tired and scared of almost everything. Not wanting to do anything. Then in a blink of an eye I'm fine. All of the 24/7 PMS that I thought was because I was mental or something.....Not me....Just the squatters in my head.....

New Day!

2008-07-15T06:54:00.000-07:00

How scary to find out that some of your family members feel as if you are lying about this. Why should anyone have to prove themselves in a situation like this. I mean I would be more worried about the fact that "Hey this is now Genetic" and can be passed onto your children. Not "Oh they are just lesions and it's all in her head. Screw them! Screw them all!
Not very nice I know but that is the way I was feeling yesterday. I cried and was so pissed off. I mean my own family not believing me. My mom's best friend believing them. I'm so glad that she isn't here to see that. It wasn't like I was wanting everyone to fall down crying for me. Some support would have been nice.
Well, I have an incredible support system of family and friends left over. I have people coming out of the woodwork just to say hi and sending nice thoughts my way. That makes me feel good. It makes fighting this ugly thing worth while. Why would I lie about Brain Tumors? Who would do that?
Enough of that....
Wednesday I see my Neurologist to see how my anti-seizure meds are affecting me. The only downside I can see is I'm tired and I can handle that. On Monday I have a whole groupload of tests. MRI, CT scan and a Bone Scan. I will have injections and IV's and so much fun!!!! But, at least they are doing this on my day off and all at once. I would hate to have to keep going back. Now, back to the beginning....if I was faking all of this would I be having all of these tests???? Sorry, I just had to throw that one in.
Xanex is my friend on those days as my wonderful sister-in-law Laura will be driving me to this. She has missed work and re-arranged her busy schedule just for me. She gives great hugs as does my brother Scot. I don't know what I would do without them.
I am a little nervous about the test results. I am hoping that I can stay on Watch and Wait until next August (2009) until my short term disability kicks in. Watch and Wait is when the docs will keep monitoring your tumors for growth and determine when to start treatment. This would also allow me to spend more time with my boys as I'm really not ready for them to see me go through that kind of surgery.
On a lighter note....This is not a death sentence for me but the opposite. I chose to live and spend my days doing nothing or everything. I want to enjoy the smiles and laughter of my boys and watch the sunrise and set. I listened to the ocean for three hours the other day just mesmerized by it. I am living each day to the fullest and not looking back. To live is a gift and every ordinary moment is beautiful when seen through the eyes of the heart.

To Start

2008-07-13T06:50:00.000-07:00

Most people think of Brain Tumors as "holy crap". This is just under that I think. I'm not a writer by any means but I feel the need to get my thoughts on this out. This is my Journey.
In January 2007 I noticed that the left side of my face went numb. It was like I went to the dentist and got a shot of Novocain. I called my doctor and made an appointment. I ended up canceling this appointment due to my sons illness. I put my own health on hold so that I could concentrate on my sons surgeries. The numbness never went away and I started to think that, maybe, it was a tooth gone bad.
I went to the dentist and got a root canal, no Novocaine. I was that numb. The dentist was shocked but worked with me. He wanted to see how far I could go before I could feel pain. It wasn't until he actually reached the nerve that I made him give me a shot. WOW! This was the end of February.
In March, my son had his final surgery to get the last piece of stone out and we were in the home stretch. I started drooling, tripping, falling and walking into walls. I was waking up in the middle of the night with debilitating headaches and was very disoriented. Things were starting to progress so I made, yet, another appointment.
In April I had to reschedule this appointment because we made another emergency trip for my son. Turned out to be just a bladder infection this time but scary none the less. I got him home and helped him get better. We had 6 more appointments for him but I wasn't going to reschedule my appointment anymore.
Symptoms at this point:
*Numbness
*Drooling
*Clumsy
*Headaches
*Disorientation
*Slight Memory Loss
I finally made it to the doctors on May 8th 2007. He thought I had Bells Palsy and sent me for a MRI to confirm. I got the MRI on May 19th. The morning of May 20th my doctor called me to say: Kelly, you are an interesting case. You have "spots" on your brain with added lesions all over. I'm referring you to a Neurologist. This is no big deal. We'll probably just want to re-do the MRI in 3 - 6 months.
I'm thinking "OK, No big deal I can handle this"
I went to the Neurologist on June 5th only to find out that I have TUMORS. She pulls up my MRI scan and shows me. She kept pointing and saying "Tumor, this is tumor, this is another tumor, tumor, and another one over here" I was in shock. At that point it was like I was out of my body and looking down on myself. I wanted to smack myself and say "snap out of it" I had questions to ask.
She referred me to a Neurosurgeon. Yet another doctor. I now have three that I see on a regular basis.
I cried for a week. I took this as my death sentence, at first. I researched everything I could on the web, big mistake. I don't recommend looking into this because the web will give you worst case scenario. I am a mother of two young boys, the wife of a trucker and a full time employee. I need to be healthy to do all of these things.
I now have doctors appointments and tests on a weekly basis. MRI's, CT scans, X-rays, blood tests, biopsy's...ect...
As of today: July 13th I have 10 Meningioma Brain Tumors with added lesions throughout. I see my neurologist once a month and will see my Neurosurgeon in September. I don't have any surgery scheduled yet which is good. I do have a repeat MRI and a CT scan this month as well. I am on whats called Watch and Wait.
I am a 33 year old woman. I have goals and dreams most of which include my family. I have an incredible support system with my friends and family and a new website I found called Meningiomamommas.org.
Everything in life comes down to a choice. I chose to live. I chose to fight. I chose to be me.
To Live is a gift and every ordinary moment is extraordinary when seen through the eyes of the heart. I am writing this blog for me and anyone else who wants to read it. Some days are harder than others but it's the choice I make to stay positive and keep smiling. The tears will still fall from time to time and I'm sure that I will get angry too. All of these are normal feeling when faced with such a terrifying situation.