Genetics

We don't chose our genetics and we don't get to pick our parents. Although I would not go back and change my past I have to decide my future. Will I knowing that I have a 50% chance of passing my disease to my child still take that chance. My mother did not know it was genetic and even so we haven't discussed what her deicision would have been. I have head opinions on both sides. One saying God will decide and two saying why would you even take that chance. This has also been the cause of my indecisvness plus I'm not having a child yet so I don't have to make that decision officially yet.
I have always wanted to adopt a child but also having a child of my own was

1 Part Compliment; 6 Parts Criticism

I wake up with headaches every morning and it’s a grim reminder that something is lurking in my brain. I have watched myself become sick, temperamental, withdrawn and unmotivated. My nights are often cut short because my headaches hit me like a ton of bricks and I see the people that love me most deal with my symptoms too. After a mean episode it’s like I snap out of it and I have to ask myself why I was so mad.


Last Sunday I was hell bent on being mad on my way to church and in my head I had every right to feel the way I did. That is until I walked into church and the Pastor gave a statistic. He said for EVERY 1 WORD OF ENCOURAGEMENT WE GIVE 6 WORDS OF CRITICISM. He continued on to say that this is why people excel at work and they leave their family life to fall apart in the background because at work we see encouragement when we do well and at home we often take our stress out on the person who loves us most.

As I heard those words all those feelings I felt I had every right to have disappeared and I automatically wanted to call my boyfriend and apologize. In reality he did nothing wrong in fact he was attempting to fulfill a request I had the day before. Luckily I still have an excuse for 14 more days and some of this is out of my control. But after 14 days I hope I can keep this statistic close to my heart and everyday wake up reminding myself to be thankful and help others around me to be positive.

Here is the link to the sermon courtesy of Sun Valley Community Church in Gilbert, Arizona: http://vimeo.com/38713396

Thankful

When I called to make my appointment for surgery she asked how soon I wanted to have it done. Assuming since people flock from around the world to see Dr. Spetzler, he wouldn't be able to get me in for a couple of weeks I said as soon as possible. The voice on the other side of the phone responded, "how about next week?". Ummm... I think it is finally setting in and that is way too soon for me to get prepared. Not only am I scared to death but the only way for me to manage that stress is plan. Plan if something happens to me all my wishes and who will watch me and help me through this. My favorite thing about this is my Nina (who literally is my angel) offered to fly my father in for a week to take care of me and stay with me in the hospital. This is extremely meaningful to me because as I mentioned in a previous blog, me and my dad are best friends. When my sister was in the hospital she had my mom while I stayed at home with my dad. So now even though I will be the one in the hospital I will still have my daddy. On another note I will have my family, my best friends, my Tia and boyfriend when I wake up. Each one has played such an important role in walking with me through this yellow brick road. My best friends (Angie, Heidi, Heather) have accompanied me to doctor’s appointments and helped me on paper, emotionally and physically get to this point. My Tia has allowed me to be selfish and sacrificed her own selfishness to take care of my grandparents and also be by my side through this. Also I know she will be the one to take care of me when it's time for my dad to leave and I get released from the hospital. I have been fortunate to be raised by each part of my fathers family but extremely fortunate that I have had my Tia Lisa, my Nana and my Tata. We have each others backs no matter what and being in the same house for so long day in and day out has made us that much closer.

As for my boyfriend, (by the way calling him my boyfriend sounds so underrated) has been my rock. We have not always been so strong together. We have gone through letting immature people pretend to be our friends, butt heads and argue over who will wear the pants :) but that led us to being powerful together. We met 2 years ago on the 27th of this month and officially started dating 2 years ago 5 days after my surgery but you would never know that we haven't been best friends for life. He knows what I'm feeling before I feel it. He knows what will make me strong and all of our memories together make it much easier for me to run away from being petrified and be in a blissful place.
I know that no matter how I come out of surgery in 14 days that these people will never turn their backs on me and never let me turn my back on myself.

The Time Has Come!

When I found out I decided that giving up was not an option even though everyone disagreed. I figured if I gave up and went and got surgery my brain tumor would win. My headaches were bad and they have only gotten worse. I usually get at least a C on tests that I barely study for. I knew since my memory has digressed I would have to work that much harder. What I did not know was that even if I studied for endless hours I still would not be able to pass with even a D and all that time I struggled to study over my pain and stress would be pointless. I tried even harder for this last test and I had every bone in the body memorized until I walked into class and I lost almost every word. I got that test back yesterday knowing that if I did not pass with at least a C I would have to give in and get surgery and try again after my brain had sometime to heal. The teacher did mention that I did better than most of the class but it still was not even a C and I had no chance to pass (with a grade I would need). It was a bitter sweet moment. Bitter because I had worked so hard to try and prove myself right and now I’m scared knowing my head will be cut open in just a couple of weeks. However, the sweet moment came knowing soon I will be out of pain and soon I will be able to jump over this hurdle and move forward with the future that I have planned.


I searched the internet for endless hours yesterday searching for the pain I will expect after surgery, my recovery and maybe what my scar will look like…I came up empty handed!!! With that being said I will take you through my journey so that if you go through the same thing as me you will be able to have a better idea of what to expect and not just medical jargon on Google.

Friend vs. Acquaintance

What does the word friend mean to you? What does the word acquaintance mean? I had to stop and ask myself yesterday what these two terms meant seeing how people around me use these two terms so loosely. In the Webster Dictionary Friend is defined as: one attached to another by affection or esteem or an acquaintance. However Acquaintance is defined as: a person whom one knows but who is not a particularly close friend. Now wonder there is so much confusion…

In my last blog I mentioned that my Nina used to say, “You can count your friends on one hand”. I grew up with the understanding that a friend is someone you can turn to, be honest with and both of you help each other achieve your goals. In order to be a friend you both have to bring values into the friendship just like you do in order to have a relationship. Acquaintances are people I work with and Facebook “friends”. I let go of Facebook for lent and it really has shown me who “who I am particularly close friends with”.

On my birthday each friend of mine brought something special to the table (even as little as a text). I don’t have to keep in contact with my true friends constantly, we touch base between our busy lives but know we can talk about anything and can always lean on each other.

When I found out I had a CM I was not afraid to tell any of my friends. I did not have to worry about how they would feel about my diagnosis because I know right than it was about me and when I was ready they knew I would address their feelings. Yes my boyfriend is labeled my boyfriend but the day I knew he was my best friend is when I did not hesitate to call him seconds of finding out and just balled on the phone until I reached his arms. Not once has he been selfish about my diagnosis. He let me mourn and would not leave my side but when it was time to get back on my feet he stood beside me. My friends have come to doctors appointments with me and made sure emotionally I was okay. I have no doubt that my friends will be there in 8 weeks when I’m scared to death and on my road to recovery!

That is what I call a friend and I wish people would not use the term friend so lightly. Would you call just anyone your family?

25 and 5

For the past several years my birthday has always taken a dramatic turn. When I turned 18 I had this awesome plan to visit the beach for my birthday even though my Nina (God Mother) was sick with cancer. Everyone told me she would be alright but the people I was with ended up injured in an accident and we had to come home a day early which was the night of my birthday March 10th. The next morning I watched my Nina take her last breath. A moment I will hold on to for the rest of my life. God brought me home for a reason that night! Ironically my cousin passed away in another city 35 minutes before my Nina (also of cancer). They were both very close. I like to believe that when he passed away he is the one who came and got my Nina so they could go to Heaven together. Fast forward 4 boring birthdays later and again an uneventful birthday full of alcohol and shots as if I were just turning 21. The next morning March 11th I woke up hungover to the devastating news that a Tsunami destroyed Japan. I felt like I woke up to the world ending. I went to my grandparents house thinking we would be celebrating my birthday, only to find that my Nana just had a stroke and I had to call 911. I got threw that day listening to people feel sorry for me but my Nana is still alive, so what if I couldn't celebrate my birthday. My Nana being alive is what matters most.
This year I decided I would not have any expectations and in fact we started celebrating a week early just in case tragedy hit again. I cannot remember the last time I had such a great birthday. I celebrated with true friends and did what I wanted to do. Every person in my life made it special for me! From my boyfriend spending quality time and my Besties making me dinner and buying me lunch. I am truly thankful for everything God has given me and even if/when tragedy strikes I know I need to be thankful for the little things because they are what mean the most.
Today its been 5 years and I went hiking to reflect on my Nina and everything she brought into my life. She always had many wise words to say and the one that would fit here is, "You can count your friends on one hand but your family is endless"

Dr. S and Dr. S

When my mom was being prepared for surgery yesterday Dr. S (not Dr. Spetzler) walked in and talked with my mother and I and answered all the questions about her surgery and recovery that she did not remember from her appointment. He was very kind but in my own head I was thinking NO WAY will anyone but Dr. Spetzler be doing my surgery. He changed my mind today when he walked in to check on my mother. He has had a constant smile since we met and so kind to my mom even though she can over talk sometimes. When I asked him if he assists Dr. Spetzler in all his surgeries he said mostly and asked why. I told him I would be having mine in May. His quick response made a huge impact on me. His reply was "I heard and I took it upon myself to look at your MRI yesterday and it is in a good spot, I can mostly certainly try and be the one to be there". The fact that after hearing my story he took the time to want to see what I was going through made me smile.

I was very embarrassed about this diagnosis for a very long time but since my mother have told our story to many interested nurses, doctor's and such the last two days I feel special. NO not because I have to have surgery or go through the associated pain but because you know what? I don’t have to do this alone. Since I can remember I have stood by my mother and my sister's side watching them suffer and repeating how I would never be able or want to survive what they have gone through. But the thing is I'm just as strong and going through this with them I'm more educated on the subject then most people with CM's. I am not scared of the CM I was scared of what it would make me become. I have no reason to be afraid anymore I'm very lucky to have people in my corner, mending the relationships I never thought were restorable and a chance to make my goals happen.
Update on Neurologists: I went to a new neurologist yesterday and I have to say I hope he never retires and continues my care forever. He did not act like he knew what was best for me but rather he listened to what I wanted and needed to feel comfortable with my diagnosis. Then he gave me his opinion and gave me options about how we would go about making me comfortable until my surgery. I have never walked out of a doctor's office feeling like I made a friend until now. Bonus: His staff is just as welcoming!

Confessions

Growing up I watched my mom and my sister struggle with everyday life having Cavernous Malformations and the seizures that plagued them. I took there struggles as being lazy, excuses and well they were different. I wanted to be NORMAL! Your asking me what normal is? Yeah I have no idea now but then I would tell you normal is going to college, having handfuls of friends, experiencing new things, having an awesome job, making lots of money and being positive. Now that I know I have a CM I see things a lot differently. I’m constantly exhausted, have a headache and yata yata yata…
As I sat with my mother as all the doctor’s who will be participating on her surgery this morning flooded in and awed and owed over the fact that “both her daughter’s also have CM’s and Theresa will be having her FIRST surgery in 9 weeks” I realized I am not any different. I too will have to go through the same struggles they went through and it has to be an independent decision to have the power within myself to want something more then just I have CM’s and all the issues that come with it.
I’ve learned to be a little less judgmental and a little more understanding. I hope that the people around me don’t judge me for my struggles but judge me for my accomplishments.

Say and Do...

Finally I have come to grasps with the fact that Yes I have a disease and No it won't run my life. Most of my posts have been sort of negative and me trying to find the median between not feeling good and taking one day at a time and living it to the fullest. My life was turned upside down. Every thought I had made up in my head and plan I had for myself (yes I plan everything out) was destroyed and I would have to re-route everything…Well so I was convinced. My only cooping skill was to pretend everything was fine but really who was I fooling. I’ve taken 15 steps backward and for the past couple of nights I haven’t gone to bed without thanking God I could not be happier with the way God has made my path. He often puts things in your way but I’m in the process of teaching myself even if it’s exhausting to jump over them, it’s even more exhausting to stand there and stare at it.
I said I was going to live my life to the fullest while instead I would go through the motions and cry myself to sleep. I finally feel like I might be living again. Between studying I’ve managed to keep my house clean and start walking again hopefully start running again in the next couple days. I went back to church and watched my best friend her sister and sister-in-law (which is like my own family) get Baptized. I cried joyful tears watching them take the next step to allow God in there lives. After everything they have been through the last year they haven’t let it stop them living life but rather make life greater and more meaningful. I wish the center of our circle were here with us but I know that I was lucky enough to have her in my life for the little time I did.
My boyfriend finally took me shooting after begging for 2 years. I can’t get over the flinching part even though I know the gun it not going to bite me back. So I guess I better keep practicing. I’ve wanted to learn how to golf for a long time and now that my boyfriend has taken this as his new hobby hopefully he will teach me this weekend for my birthday. After my surgery I think I will get some lessons from the pros!

I have to get back to studying I have a test to A’ce tomorrow!!!