November 2002 rediagnosed with a recurring tumor I am going to bring you through the whole fun thing
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This is where you stick random tidbits of information about yourself.
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Brain Tumor History And Other Rants
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Monday, April 05, 2004
4/5/04
Songs, so I have put up enough songs I guess. Nothing much new, buying time. Sometimes it takes getting outside of your circle to see the cloud you live in. I mean I know people had said to me in the past, I couldn’t do it, I couldn’t go through what you are doing. I have discussed this before, when you are faced with it, you either do it or you don’t. I went through with it, the treatment that is, I mean I don’t recommend it to anyone as a hobby. But sometimes I get so isolated and used to being in my own situation, that it takes seeing how the other half live to see that I have done something in being a hermit. I mean here I am living up on this mountain by myself, without a car. I do get rides to stores from helpful friends, family and neighbors. Hey you learn not to mind mooching rides to pick up food, medicine or just a ride to where you got to get to. I mean I spent the rest of my adult life always being able to get in a car and go. Now I look at other people and realize you know what, they couldn’t do what I am doing. They don’t have it in them to be so stubbornly independent to live on their own. No it isn’t the happiest way, I mean I miss my independence so much. That is one of the biggest drags. Car payments, insurance, and raising gas prices you could have them!! But as far as putting up with myself and taking care of myself and having limited social contact, especially during the winter when you get holed up in the house. I guess it has been gradual also, being sick for most of last year distracted me from the big change of being on my ass. But I know some people that just couldn’t sit on the bench like I have, they would wilt and rot. I guess it is not anything to be proud of, a lot of people would say I am just a lazy bastard and all that. Some people would be jealous and would love to not to go to work, but it is beyond that. Oh and another thing, it never makes me feel better when you reiterate to me how right now should be “our” really successful years. Flush my self worth with that one. I still have the fight in me I know that, I haven’t had anywhere to funnel the energy since I have been laid off. Remember you might hate going to work every morning, hate your job (and only you can change that). But once life kicks your health in the ass and you lose that, you got nothing. So if you have your health and you are able to go to work every day, Make your money for your mortgage, food, clothes, a vacation every so often. Don’t take it for granted. In the blink of an eye it can just be pulled away from you.
I guess it is just interesting when I see people that are caught up in their day to day goings on, and don’t even realize what they have going on to be thankful.
Things didn’t turn out like we thought they would I guess.
I think of some of the craziest “events” that I have experienced in the last year. They are the worst of it. When something upstairs misfires, and you are no longer in control of yourself. I mean try to picture this: Flashback to an entry from 11/22/03:
So what’s been new? Well this month so far 2 “events”. I had a smaller facial seizure about 2 weeks ago. You know that first drop on a roller coaster? The one you know is coming? Like you climb up and up, and then you look down and DROP. That’s the type of take off these things have. Except you don’t start a seizure on purpose, you put yourself on that rollercoaster. So after that climb you drop and then everything goes rushing by and you can’t stop and get off until the end, you just have to ride it out. Even if you are scared shitless, you can’t stop until the ride lets you. I personally like to flip the bird when the camera takes that picture of you that you see when you get off. Hey it makes me laugh and that is all that counts.
Well the second “event” I had just this past Wednesday. And I usually know that I am due for one depending on my stress level (more stress= better chances, less sleep=better chances, and chemo that’s a given). I also usually have all these tiny little ticks like warning signals that I am due for a beating. So for the past 3 weeks I have randomly had a few ticks, usually facial, what’s it feel like? Like a jerk in your face that you didn’t do. So back to Wednesday we are driving back from the vet and BAM, I am looking down the first drop of the rollercoaster, and have been dropped. My face started ticking, tick tick tick, I am thinking to myself, “OK no big deal just a facial one. I am staring at the clock in the dashboard it is 3:11 pm. I thought great I can time this one. I remember just my left eye going bang bang bang by itself from right to left. It was pinning left bang bang bang (no pain but it felt like my eye was a bouncing ball going left left left). I remember thinking damn my eye is pinning real hard. I kept thinking no big deal this is just a facial it will be over quick. My tongue too was doing loopy loos in my mouth too. Like after the first drop the rollercoaster gets easier. Not the case on this trip. I thought it will end quick no big deal. I remember the dog was crying a little, I think he probably had to pee, it had nothing to do with me. I kept thinking ok stop now, no more, stop now. You know the OH SHIT feeling when after the big drop you go up a little down some more and bank left. Then I start to feel my left arm shake, but it is more like a vibrating feeling, and I am just waiting for it to go numb so I stop feeling it shake. You know that vibrating feeling from a wooden rollercoaster, bingo! That’s why I like steel coasters so much better. I like a smooth ride for my torture. This is like getting an even bigger drop in the middle of the ride, where you don’t expect it. Or when you realize now you have to ride the whole thing over again but backwards. Because now I know this thing isn’t over. The seizure is going to be a biggie. I am still awake for the whole thing, if I pass out, that is a worse signal, and I have to go to the hospital. So I want to stay awake, but I don’t want to live through it. I remember I was motioning with my right arm, but then even that I couldn’t do anymore. You know that feeling you get when the rollercoaster suddenly stops and you just slowly pull back up to the gate. Like, WOW OH SHIT. That’s the type of feeling at the end. It slows down to an almost stop and then I know it is over. I can’t talk at the end I am wacked out. I feel about ½ of my body. I can’t feel my left side at all arm or leg. I feel virtually paralyzed at this point, I slowly start to regain my speech. I am a little disoriented. But I just have to wait for feeling to come back. So you know how that long rollercoaster is only like 60 seconds of a ride. Same deal here. You wait through all these warning ticks (like waiting on that line) you jump on the ride (start the seizure) and it’s over before you can stop being scared. Except I think a seizure is scarier, I actually like going upside down on rollercoasters, I hate these seizures.
Screw Six Flags. I have seizures (and it doesn’t cost me parking, park admission, the piece of my car the monkee’s stole in the drive through safari, overpriced food and drinks and a souvenir.)
So we get home about 5 minutes later, and now I have to try to get out of the car. My left side is really dragging and I still don’t have much function or feeling in my left arm. I tried walking up the stairs normal and my left leg kept dragging so I tripped up like 3 stairs so then I realized that I had to step up with my right leg first. I couldn’t judge the steps with my left leg it was dragging. I got inside and sat down a little while. I tried using the computer, but my left hand just laid there lifeless. And my right had was a bit tired too. My eyes were tired. I had to stop it was too frustrating trying to do something and my eyes being tired and my left hand wasn’t even moving.
How was your Wednesday?
This is the craziest part to think that that is where I might very well be going into bigger events that will kick my ass and I own no power over them. Remember getting on that roller coaster by choice, now imagine your body is taken over.
Here’s another past gem I never posted this is a good one for those who believe anxiety doesn’t exist:
Anxiety
Anxiety is real anyone who says it isn’t has never had it in their life. For whatever reason things like this can and will make you mental. Of course you go mental. The doubter’s say that anxiety is mental, of course it is, everyone is freaking mental. But anxiety can be so gripping, you can be trying to explain a surgery tale, what a seizure feels like and for me my speech speeds up, I guess hoping when the explanation is over the feeling will be. What does it feel like, I guess a nervousness. You just don’t feel in control, like something is going to happen. It can happen in public also after being couped up a lot after surgery. I remember standing in the shampoo isle in the Cost Cutters, I just felt so over whelmed by all the bottles in the aisle, I just wanted to be home hiding at that very moment it is very overwhelming. I did the same thing the day I came home from the second surgery I wandered around Path Mark alone. You know what a home video camera looks like when someone is walking with it and it jitters, my whole world felt like that. I had loose parts upstairs dammit. And wouldn’t you know it the sample ladies were there and one said would you like to try this warmed up processed crap. I just smiled and shook my head no. Lady you have no idea what my week has been like, no way.
If you think anxiety don’t exist screw you and get me some valium dammit (that stuff’s hard to get nowadays, but that is a drug I could get to like, it kind of takes the edge off that way instead of cutting yourself you just beat yourself and enjoy doing it!!)
So what if there was a miracle cure tomorrow. Someone found a turn key method to turn this whole thing around. And it was something stupid like eat 10 grapefruits in a row. What would happen to the whole cancer research, drug company interests, cancer clinics, hospitals, MRI machines, all that jazz would go unused. Do you think the government would embrace it? Think about it would big business actually want you to know the solution was easily obtainable? The economic back lash would be devastating. There is a Doctor in Texas who is supposed to have a great holistic approach to brain stuff who has cured “un-curable” patients. And no your insurance won’t pay for this type of treatment. Something for me to keep on the burner for a next time. I mean the government almost tried to lynch this guy figuratively. There are people alive today and the only thing to credit is his treatment. But come on it is like someone coming out on Easter Sunday and saying I am Jesus Christ I have come back for my sheep, we would lock up that person in the blink of an eye.
Maybe I am a skeptic? I don’t know. Don’t worry I am not the second coming or the Easter Bunny. It is the suppression of a solution to this problem I have that scares me most.
10:49 PM
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