Tuesday, July 17, 2012

Second Opinion

I saw a new neurosurgeon. He told me the same thing the first one did (inoperable) but in a much nicer way. Everybody kept telling me to get a second opinion, and a third. I saw the second yesterday.  I liked him a lot better than the first Doctor.  He is the husband of a friend’s friend. haha  He was very friendly and took the time to give me a lot more details about what is going on.  Instead of just telling me  there was nothing he could do to help me and send me home, he actually explained WHY he cant do something. However, he also told me that if ever I do need the surgery to save my life some day, there are some surgeons that are skilled enough for it. Its not without major risks, but I wouldnt have anything to lose then.

Like I said before, this type of tumor is called a Cavernoma.  Mine is in the brainstem.  Its a very dangerous area to have this in.  Compare the brainstem to the cable that connect the computer box with the computer screen. Without it, the computer signal simply wont transfer to the screen.  He showed me how difficult it is to access that area of the brain. You have to go thru the entire brain without damaging anything in the process.  Its a very long distance when you have to be perfectly precise.   At the same time, having a cavernoma in that area of the brain is more risky than any other parts, and the chance of it bleeding again and cause major strokes or aneurysm are higher. However, I am staying positive, because there are no uses for me to live my life always wondering when this will happen.   He told me that at some point, I will have to make this very difficult decision… wait for something catastrophic to happen, or operate now and risk now.   Not the kind of decision anybody wants to take. I am just glad its about me and none of my children.  How could a parent decide something like that! Its almost like playing God. Wait, it IS like playing God!!

I feel good today. I am having one of those “good days”.   I was so so dizzy for the past week…  and when i have a lot of seizures (simple partial seizures), my foot gets really numb.  My entire left leg, arm, face and foot are always numb, but my toes are usually good and when they are, i walk fine, even if i have to focus all the time on walking without feeling the rest of the foot.  I feel “pressure”, but I have very little sensation.

I was told yesterday that this is permanent.  It does feel better when i have little to no seizures. They come and go and are so unpredictable! Sometimes, i’ll be 2 days without any, and other times, its all day long non stop. When that happens, that’s when my toes get numb too, and i Limp when i walk.  Its putting a lot of pressure on my right leg, and i never thought i would say that one day, but my hip hurts. hahaha   I dont know if i will use a cane or not soon. I am trying to avoid it.   Its spooky, because I’ll have a hard time walking, and the next day, I am fine!    My right hand started to be tingly. The neurosurgeon told me that because of where my cavernoma is located, this willl affect my entire nervous system, especially my extremities…   I was hoping I had a few more years before the right side gets affected. I dont want my right foot to get numb too, because then I dont know how i’ll walk.

I want to start doing Yoga. For some reason, stretching feels really good… i am always trying to stretch. Its almost as if my muscles get stiff and it feels good to wake them up.    I never liked Yoga… but i will try it again.

This video inspired me to try:

Thursday, July 12, 2012


That is what I have been told...  very coldly, blunt... "go enjoy your family".  God Help me.

Monday, July 2, 2012

Ready, Set, Go!

I have been reading a lot about my “condition”.  Its been good to know different views, different stories, from different people with different attitudes.  I have not met anybody that has exactly what i have, in the same location... which make the difference between life and death in this case... but i am hopeful I will in due time.   

Its good to know what to expect, and what what to let go.   I came across so many experiences like mine.   A brainstem cavernoma is either in the brainstem, touching it, or next to it. It affects the brain the same way and all considered a  brainstem cavernoma because its the area of the brain that control the whole brain.  It is the deepest area of our brain, connecting our brain to the rest of our body and controls everything. In other words, people like me who has it there, can be affected in all aspects of the body, physically and mentally.    If I had a bleeding cavernoma in another area that only controls the memory, then only my memory would be affected.

I have already experience all the symptoms from all areas of the brain to a certain degree.  It is worse for me in the left side of the body, the memory, the ability to connect thoughts and spoken words.   The overall weakness, fatigue, dizziness, balance issues, light headed, nausea is normal for anybody that has an “active” cavernoma, but all other symptoms are different for everyone.

It was hard the first day I found out I had it in an area that will affect everything.  I never know what is not going to work that day.  Strokes are possible at any time, because I never know when the cavernoma will bleed and how much, but the signs of a strong bleed are impossible to ignore and I  was told numerous time by Dr. Li that i will just “know” and to get my ass to the ER when it happens. A LOT of people have had many strokes, some 2-3 times a year, and some even without realizing it was a stroke. It was found later on MRI, which i will receive every 6 months.   Strong, deadly stokes, are very rare, but stokes that can cause permanent damage to any part of the brain are very likely.  The statistic shows that by the time you are diagnosed for being symptomic, to the time you have a life threatening stroke, it is about 10 years. But again, it depends how big the cavernoma is/get and how easily it bleeds. Some people never get permanently damaged from a full blown stroke.

Its basically a not knowing game.  I got no choice but to play it. So, I am going to play it, play it as long as I can. Winning it for me simply means that I am not going to let it destroy my ability to be happy, to smile, to move on, to enjoy my family despite of the way i feel, to have fun with my friends despite how embarrassing it gets, be positive and drama free despite living Russian Roulette.    I have never had trouble laughing at myself.  I will try to keep that going.. because wow, its going to be either very depressing, or freakin hilarious, and I choose the second.

Since all this started, my body is feeling better, except the overall weakness and dizziness from hell.   Being able to really hold onto something with my left hand comes and go all day. My foot gets numb, and I have already taught myself that its literally all in my head (haha!) and that my body is strong enough to hold my leg, i just cant feel it.  When my foot is numb, I walk funny because instead of sitting on my ass, I walk anyway, but it feels like when you sit and cut circulation and stand up and cant feel your foot for a few minutes, you try to walk and stumble. That’s how it feels.   You kind of learn that you actually still can walk, you just cant feel it. But yea, it doesn’t feel good… :/

My left side is not as numb as it was when i initially found out my problem, because that is what got me to the Dr initially. Right now, its my memory and speech that is giving me problem.  I  can think and speak fine, but its like both together don’t go well.  I cant speak as fast as my brain think.  My words stumble, and a lot of time,  its like i cant think of the word im thinking about.  Its really frustrating.   Also, I have to really focus and think hard about any types of “when”.  I keep asking myself if the boys came back from camp 5 days ago, or 2 weeks ago… i seriously cannot figure it out without thinking of what date we are, and every day, many times a day, i don’t remember what day it is.   We have all done that, but this is different, its really scary for me to think this is going to get worse.

I found out that typing and talking is totally different from one another.  I am afraid that at some point, typing is the only way I’ll be able to say what i really mean.  I don’t think the people around me really notice how hard i have to work to speak what im “thinking”. Its getting harder and harder, but im still able to work to the point that I do fine, but its so draining.  I feel like I am taking a hard exam, all day long.

However, the same way my left side got better, I hope that this is going to get better, too, but then, what will be my issue? haha   Every time it bleeds, even a few drops, it affects something. Sometimes its permanent and sometimes it heals itself to some degree after the blood is absorbed.

If you know me, you know that i have always been very active and super energetic. This has hit me like a tun of bricks, and its been really hard to accept that part.  If I was someone that was never really active before or sedentary, i swear i would make myself believe that all i can do is lay down, have naps, and do nothing all day...   but because i have experienced what being a mother is, you have to keep going when you are sick, keep going when you are so tired the room spins. Because of that, I know that how I feel, and what i should do about it, are 2 different things. The facts are, sitting all day because i have no energy would just be a very pitiful excuse that only lazy people tell themselves. Sorry, that’s what I think.  I’m not going to get better by sleeping 16 hours a day and lounging when im awake.   That would just be a very vicious cycle, and a sad one. But to suddenly have no energy, after been known to “work so fast” and accomplish so much physically in one day, that is a very very hard thing to swallow.   I have to remind myself that this didn’t define me as a person… it doesn’t mean im not efficient anymore, it doesn’t mean i cant accomplish things.   Why, because i am not going to just “lay and lounge”. I’m not going to fall for that ...

Tuesday, I had to do one of the hardest thing I ever had to do. I had to call my clients and let them know I cannot work anymore. I cannot clean anymore. I was quick, efficient, very good at what I did (cant i brag, just a little?) I was meticulous, organized, knew what i touched up to 2 months before. I rarely rotated tasks, because i was fast and efficient enough to clean a whole house in 3 hours.  The tasks i did rotate, i knew exactly, 10 houses of them, what I did, and when, and what needed to be done again that day.

The past 3-5 months, I really was literally forcing myself to work.  I know i could, and probably should of, stopped.  I wanted to help my family, and I found the strength to finish. I got more and more confused, forgetting who i had to clean that day, not remembering if i did this or that, last time. I knew something was really wrong. I would be changing sheets, and all over sudden, this huge rush of weakness would take over me. I couldn’t even lift the sheet. (I later found out that these were Simple Partial Seizures). It was horrible. I couldnt move, had to sit on the floor, and wait for this "rush" to pass.  I cried a few times, convincing my brain that I had to finish, therefore, I could. And I did.   But about 2 weeks ago, it was happenign ALL the time, every 5 mins.  The more  physical I got, the higher my heart rate got, the more seizures i got. So i had to work slow, really slow, which my clients never noticed because most of them were not home.  I did more rotation when i couldn’t be slow, when i had limited time, which made me feel terrible because that is not the way i do my job. 

So, stopping my business was heartbreaking. It was going very , very well, and my sister did such a wonderful job on my logo, my website. I was proud of this accomplishment. It made me feel good about myself.  I do want to find something else to do, because the money i made was no extra money, it was needed!!  Its going to be a difficult adjustment, but until i find something else, it’s going to be difficult. Every single stories I read about people with this condition have had to quick their job. One was lawyer, archeologist, teacher, computer engineer and even a Doctor! People with great jobs!  All of them were very active and in good shape, too.  Everything changes!

I will find out next week what is the treatment plan... its going to be a long journey...

Ready, set, Go!

Anyway, I’m going to let God role the dice, and play this game.