Wednesday, July 30, 2008

Steroids!!!!! YUK!!!!

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 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

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....

Monday, July 28, 2008

New Tests

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.....

Thursday, July 24, 2008

New Game Plan

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.....

Saturday, July 19, 2008

Today I am Thankful

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.

Wednesday, July 16, 2008

Pitty Party For One

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'

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.....

Tuesday, July 15, 2008

New Day!

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.

Sunday, July 13, 2008

To Start

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:
*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
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.