Before I came back to post on my news from Dr. Know it All, I needed to gather my thoughts and put myself back together again. As I tried to hold myself in one piece it only made the process of acceptance longer. Finally letting go and letting myself feel the way I really did helped me accept my fate. Although I felt strong up until the point of going to see Dr. Know it All, his confirmations only made it more real (Which I think no matter what he said surgery or no surgery) the outcome emotionally would have came out the same. Before I start I want to confirm that I call Dr. Speztler Dr. Know it All. I switch his name for no reason other than I just feel he really does know it all. So...
I sat at Dr. Know it All's office for 2 hours. I thought going early I would be able to get in early but knowing that people come all around the world to see him I should have thought that through better because my anticipation just kept getting louder and my what if's only grew taller. By the time Dr. Know it All's sidekick walked in I was just ready for it to be over. They corrected what Dr. Bad News said and confirmed what I thought, that surgery needed to be done. (Honestly I do not think Dr. Bad News can even read an MRI) They answered all my medicine questions and also referred me to another neurologist who worked close with Dr. Know it All and who would oversee my care. They released me to keep running marathons and explained my tumor was in an easy spot to retrieve. Of course many things could go wrong but mostly the only things I have to worry about from now until the surgery is memory (which I do not seem to have much of anyway), headaches and irrational decision making. I'm pretty sure the irrational decision making can be made as an excuse in the future but for now I think I'm still making pretty rational decisions. Including the one where I decided to wait 16 weeks to have surgery. Yes I can start having seizures and yeah my headaches might get worse but chances of any permanent damage are very slim. I opted to wait because I have been in school for a very long time trying to decide what I want to do. I finally decided on my degree and missing a whole semester messes up MY plan. I'm also not very good at standing up for myself and sticking to my decisions. I decided for now on nothing will hold me back and I run my life especially not my tumor! I'm not sure where God is directing me but I do know he has reassured me this is the right path for me.
I'm finally starting to get my life back to normal and not feel like I’m on an emotional rollercoaster. This has helped my headaches tremendously and also get back on track to ace this semester. I will wake up every morning thanking God for giving me another day and when I go to bed I will be thanking him for the strength he’s given me to get through the day in the most normal way possible.
Monday, January 30, 2012
Friday, January 20, 2012
What if...
It has been a rough couple of days and a lot of what if's. I do not get to see Dr. Know It All (Dr. Spetzler) until next week.
People come all around the world for Dr. Spetzler to work his magic on their brains. I say magic because God truly gave this doctor a gift and he in no way is wasting it. I am a control freak and if I can't plan my day or control what is happening in my day I am uneasy. I know once I see Dr. Know it All even if he tells me I have to wait and see, I will be okay with it. I do not normally trust doctor's in fact I trust none but seeing the amazing surgeries he has done on both my mother and sister, I will trust and I will allow for my mind to rest. He has the voice of an authority who tells you exactly how it is, does not care if you like him socially and you take what he says and it just makes you feel safer.
If I find out I can have surgery I will go to Disneyland for a day or two. If I find out I have to wait...I think it's time to rent a beach house and relax.
People come all around the world for Dr. Spetzler to work his magic on their brains. I say magic because God truly gave this doctor a gift and he in no way is wasting it. I am a control freak and if I can't plan my day or control what is happening in my day I am uneasy. I know once I see Dr. Know it All even if he tells me I have to wait and see, I will be okay with it. I do not normally trust doctor's in fact I trust none but seeing the amazing surgeries he has done on both my mother and sister, I will trust and I will allow for my mind to rest. He has the voice of an authority who tells you exactly how it is, does not care if you like him socially and you take what he says and it just makes you feel safer.
If I find out I can have surgery I will go to Disneyland for a day or two. If I find out I have to wait...I think it's time to rent a beach house and relax.
Tuesday, January 17, 2012
Stop me...NO WAY
I got the news 6 days ago now and I'm not sure where those 6 days went besides living life like a robot and trying to reorganize my thoughts. I have been attempting to train for a half marathon for 6 months (between work, school my family and making excuses). When I found out about my brain tumor I was asked if I would still run that coming Sunday. Without hesitation my immediate response was DUH! nothing will ever hold me back. So... I would actually have to put a medical condition on my ID Bracelet oh well. In fact knowing I had a medical condition that might hold someone back made me want to strive that much more and excel at this race.
I beat my projected time by a whole 15 minutes and if you are a runner you know that’s a lot of time. First half marathon (PF Chang’s Marathon 2012) and I made it in 2:17:27. I had never run 13.1 miles before but I knew I had to make it. I believe pain makes you stronger and I also believe it makes you strive for more.
The saying you can sleep when you die and live everyday like it is your last has never meant more than it does NOW.
I beat my projected time by a whole 15 minutes and if you are a runner you know that’s a lot of time. First half marathon (PF Chang’s Marathon 2012) and I made it in 2:17:27. I had never run 13.1 miles before but I knew I had to make it. I believe pain makes you stronger and I also believe it makes you strive for more.
The saying you can sleep when you die and live everyday like it is your last has never meant more than it does NOW.
Friday, January 13, 2012
What To Say?
I do not have much to say today since Dr. Bad News was Dr. I Have No Clue! Not only could she not answer any of my questions about what I can do as precaution to help my tumor not to bleed but what the game plan is. I found out that I have a tumor in my right frontal lobe but not what that can affect. She clasified it as small but according to my research .8 to 1cm is small and mine is 1.7cm.
I have an appointment with Dr. Know It All in a week. Dr. Spetzler (Dr. Know it All as I call him) is someone I know because he has performed surgeries on my sister and mom and he is a tell it like it is kind of Doc.
For now I feel like I got off the roller coaster since I found out my tumor started growing in 2005. They could not diagnose it at that point since it was only slightly enlarged vein. If it took 7 years to get to this point I would say I'm doing pretty darn good. I am officially sick of hearing people say their life sucks and complaining because not even I can say my life sucks. So I hit a bump in the road...but the people holding my hand through this rock and I know I will never get stuck. Don't forget to Pray for me :)
I have an appointment with Dr. Know It All in a week. Dr. Spetzler (Dr. Know it All as I call him) is someone I know because he has performed surgeries on my sister and mom and he is a tell it like it is kind of Doc.
For now I feel like I got off the roller coaster since I found out my tumor started growing in 2005. They could not diagnose it at that point since it was only slightly enlarged vein. If it took 7 years to get to this point I would say I'm doing pretty darn good. I am officially sick of hearing people say their life sucks and complaining because not even I can say my life sucks. So I hit a bump in the road...but the people holding my hand through this rock and I know I will never get stuck. Don't forget to Pray for me :)
Thursday, January 12, 2012
Dr. Bad News
On three hours of sleep it was time to start my day. It was pretty normal day besides the whole three hours of sleep I got (but well worth the fun the night before). I got an MRI during lunch break and by the time 4:00pm hit I was starting to feel dilerious and was ready to go home and crawl in bed next to my boyfriend. On my way home my phone rang and all I heard was:
Dr.: This is Doctor Bad News
Me: Okay
Dr: I have your results already
Me: Okay...
Dr.: You do have a tumor and it is a Cavernous Malformation
After that I felt like I was driving through a tunnel and the last thing I remember hearing is "your headaches will get worse and I will see you at your next appointment".
See, I grew up with my older sister and mother having seizures and multiple surgeries. I had a very close relationship with my father and we were more a like then not. We did not have seizures and we both loved sports. Even though I was told to get an MRI I never thought in a thousand years that I would ever be diagnosed. I went several years without getting an MRI and after taking a Biology class in College I decided I was more interested in if I carried the gene that causes these tumors.
I have had frequent headaches that gradually have gotten worse but keep in mind that I am a full-time student and work full-time so that is pretty common. When I was told the MRI would cost me $500 out-of-pocket I declined the test and decided if I ever have symptoms like seizures I would get tested. Yes I'll spend $500 on shoes but an MRI, that does not look pretty on my feet! Well... think again Theresa, because parents know best and my grandfather, who did most of my child rearing, was not going to allow me to skip on this test.
Once Dr. Bad News hung up the phone my world fell out of my eyes about 10 tears at a time. Immediately I called my boyfriend and instead I got Officer Boyfriend who immediately calmed me down. I'm not sure of his exact words but pretty sure it was basically "get over it, you don't have symptoms yet". You might think that is harsh but next time you have a life changing event trying to drive you would be glad to have a blunt stable voice on the other side of the phone even though he just received the worst news with you.
I barely remember getting home through that tunnel but once I was home I tried to sleep it off. After more tears and every time I would wake up I would feel like I just woke up from a nightmare but NOPE it was reality. I really did have a tumor and I was going to have to deal with it ready or not.
Since I've grown up with these tumors I am very familiar with what they are and how they work. I suppose this gives me one leg up on accepting my diagnosis and getting over it. I am very used to taking care of everyone else in my life and now the only change is I'm the one who has the tumors now and am going to have to take care of myself instead of everyone else. So appointments have begun to be scheduled and I will follow the yellow brick road on this adventure that God decided I was strong enough to get through.
Dr.: This is Doctor Bad News
Me: Okay
Dr: I have your results already
Me: Okay...
Dr.: You do have a tumor and it is a Cavernous Malformation
After that I felt like I was driving through a tunnel and the last thing I remember hearing is "your headaches will get worse and I will see you at your next appointment".
See, I grew up with my older sister and mother having seizures and multiple surgeries. I had a very close relationship with my father and we were more a like then not. We did not have seizures and we both loved sports. Even though I was told to get an MRI I never thought in a thousand years that I would ever be diagnosed. I went several years without getting an MRI and after taking a Biology class in College I decided I was more interested in if I carried the gene that causes these tumors.
I have had frequent headaches that gradually have gotten worse but keep in mind that I am a full-time student and work full-time so that is pretty common. When I was told the MRI would cost me $500 out-of-pocket I declined the test and decided if I ever have symptoms like seizures I would get tested. Yes I'll spend $500 on shoes but an MRI, that does not look pretty on my feet! Well... think again Theresa, because parents know best and my grandfather, who did most of my child rearing, was not going to allow me to skip on this test.
Once Dr. Bad News hung up the phone my world fell out of my eyes about 10 tears at a time. Immediately I called my boyfriend and instead I got Officer Boyfriend who immediately calmed me down. I'm not sure of his exact words but pretty sure it was basically "get over it, you don't have symptoms yet". You might think that is harsh but next time you have a life changing event trying to drive you would be glad to have a blunt stable voice on the other side of the phone even though he just received the worst news with you.
I barely remember getting home through that tunnel but once I was home I tried to sleep it off. After more tears and every time I would wake up I would feel like I just woke up from a nightmare but NOPE it was reality. I really did have a tumor and I was going to have to deal with it ready or not.
Since I've grown up with these tumors I am very familiar with what they are and how they work. I suppose this gives me one leg up on accepting my diagnosis and getting over it. I am very used to taking care of everyone else in my life and now the only change is I'm the one who has the tumors now and am going to have to take care of myself instead of everyone else. So appointments have begun to be scheduled and I will follow the yellow brick road on this adventure that God decided I was strong enough to get through.
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