November 2002 rediagnosed with a recurring tumor I am going to bring you through the whole fun thing   Archives << current   This is where you stick random tidbits of information about yourself.

Brain Tumor History And Other Rants   Tuesday, July 29, 2003   What are you a sick pervert and you want every detail. First day of last round of chemo. Chemo still sucks. Next topic. Commuting to the city to get chemo sucks. Even though it's the last round. It's still gonna suck. Any questions? I didn't think so. I will spend the next 7-9 days fantasizing about food I can't stomach. Cringing when I smell food cooking. Hating being in the car, being carsick. Eating jello, cause at least it tastes good of all the bland food, who the hell wants to eat crackers, ok I know one of you weirdos does. But not without some sharp cheddar on it. Imagine hangover nausea lasting about 8 days, there you go. Any questions? Shut up John, no one asked you. Don't worry I have a positive attitude. I positively know this is gonna suck. But enough about me, hey thats why you come here. So there you have it, day one and I feel like I got punched in the stomach for lunch. Goodnight. 8:28 PM Sunday, July 27, 2003   I am impressed with myself. I actually followed a sporting event. I am very happy to say that Lance Armstrong won the Tour De France. Take that you French Fry snail and frog eating wimpy country 5 years in a row that an American beats your bike race. This is D week with chemo on Tuesday and Wednesday, anyone not busy and want to go for me? Had to ask. Somehow it seems that everything goes wrong in one year and that life doesn’t seem to ever turn up somehow. I don’t know bad things happen in lifetimes versus 3’s I am definitely beyond 3 bad things in one year alone let alone the last 4 years. People say I couldn’t do it. I couldn’t go through what you are going through with the chemo but you really don’t have a choice. You either do it to live or you don’t. And then there are times that you say what are you doing it for. You just want to pack it in. But there are all these stupid things to take care of before you do it. I would want to give away my stuff to the appropriate friends before I went. (Beware if you start getting all my cool stuff). People will tell you well it will get better; you are doing this to have a better life. Then they tell you to live each day. Well make up your mind should I live each day or should I live for the future. Personally I would rather pick the days and forget the future, the more I live the more it sucks. I know there are plenty of people that feel that way. We change and forget all the things we loved to do in life and make sacrifice after sacrifice, after we get shut out and shut down. All things happen that we have no control over. All bad things happen to everyone. How many people you know have actually won the total lottery? Thank you, and you play why? You like paying more taxes, oh ok. We live for that one chance at freedom which we never get. We have to work to live. No one hands out free tickets that I know of. This middle class gig sucks big-time. There are very few people that are happy about getting up and going to work everyday. Who the hell needs it. We go to work to pay off debt, to obtain more debt. Look at it like this if you live in NJ, you need a car. You need a job to pay for a car, you need a car to get to a job. Right there you are paying what 100 bucks a month insurance plus payment. You gotta live somewhere so they can send you bills. You have to pay rent or if you are lucky enough a mortgage. Your mortgage is most likely ¾ taxes and interest and insurance in the beginning. And taxes always go up. Rent none of it is yours you are just making some baby Donald Trump rich. You need a phone so people can telemarket you. You need to eat so you can poop it out. You get paid from your job, that is taxed. And you pay towards benefits, retirement (yeah right), life insurance etc. When you buy a new car you pay the state taxes. If you sell it the next person pays the state taxes again on the same item. What else, what about credit cards that everyone uses. You know you just “need” to pick something up. Then at the end of the month you cringe when you have to write the check. Don’t forget electricity, and all those fun bills. You see no one ever knew I could teach High School kids home economics. Maybe I can line up a job after all. But wait you don’t have the College courses for that or any previous experience so forget it no one hires you without previous experience. Good Luck. 7:33 PM Friday, July 25, 2003   So I have done it. I have gotten healthy enough for chemo. I am healthy enough to be hurt again. Last cycle, come on one more time for old times sake. Just deal with it there is no way I can get out of this one. Come on everyone thinks the last one this is cake. OK, you do it!! I know I am a veteran now. So I am going in under the needle on Tuesday. This is my power weekend now. What will I do probably just garden or something stupid. You tell me what one can do without driving. I would like to be crazy and do something like eat every meal out, just because I am actually healthy enough to do so. So yeah chemo sick is coming again time to go underground. Hey I guess a lot of people would dig the gig, I don’t know I think it’s overrated by now. I was able to go out to lunch and dinner on Wednesday. That was living on the edge and crazy for me. Screw them whites once they come up, I go crazy. Oh yeah don’t forget the part in the afternoon where I went to an arcade with my friend. Yes while most of the free world worked we played arcade games. Ok that is a lot better than working. Things couldn’t get worse for the kid this year department. My parent company sold my company to someone else. Big layoffs, hey throw the guy on disability in there too, he isn’t producing a thing. So yep the kid is laid off and on disability now too. You can forward job offers to me, looking for something in September folks, got some plans to recover between now and then or something like that. Like I think I have said, this is the worst year of my life, and turning 30 has really sucked for me. I don’t recommend it to anyone. Where do I go from there on an update… I don’t know. 11:54 AM Friday, July 18, 2003   Don’t fall apart on me tonight. I just don’t think that I can handle it. Don’t fall apart on me tonight. Yesterday is just a memory tomorrow is never what it’s supposed to be and I need you. Come over here from over there girl. Sit down here you can have my chair. I can’t see us going anywhere girl. The only place open is 1,000 miles away and I can’t take you there. I wish I had been a doctor, maybe I would’ve saved some life that had been lost. Maybe I would have done some good in the world instead of burning every bridge that I crossed. So if all my treatments were 28 day cycles, chemo would have been done already. But the first month got stretched to 6 weeks, 2nd cycle I had to wait for my blood levels to get high enough for me to get chemo, lasting 6 weeks. And now on the 3rd cycle it is the same thing. Monday will be the 7th week. And this cycle they lowered the chemo dosage, imagine if it was the same. Basically my platlets might be high enough on Monday, but my whites are too low. I am actually very susceptible to germs right now because my whites are low. The whole thing stinks because there is nothing you can do to help yourself except wait for your bone marrow to make enough cells so you are stable enough to get chemo again. I call it getting healthy so they can hurt you again. I guess that the chemo is acting cumulative in my system so each month is harder on the inner workings. It stinks because I feel relatively healthy, but I am dangerous to myself because what people usually can fight off as far as germs and bacteria in food and crowds can land me in the hospital. And that has got to be a run-on and I aint fixing it. So eating out is a big no no, the problem is you don’t know how things are cooked, like I said normally if there is some bacteria on food like fresh fruits for instance, our body pass’s it right through. Not the case for me. I have to cook all my food to a crisp to make sure it is free of normal bacteria. I carry purel around with me religiously to keep my hands free of germs, which they say is your # 1 offender is touching things and getting germs. Well I am sick of caring so much, tomorrow I am getting out of the house, and maybe even eating out. This is dangerous living, move over evil keneval. My friend is coming up for the day and I don’t want to subject him or me to being tied down to this house all day. Of course we don’t have any real plans yet. We can’t go drinking, well at least I can’t, and I am no good because I am a sober non-driver. I am a drunks worst friend. My car might be sold soon. That really sucks and piss’s me off. I dig that car a lot. Hey anyone need a 2000 black 6 cylinder mustang 5 speed? It’s not sold yet. Let me know. I am just trying to get out of one of my debts. So back to the doctors on Monday to see if my levels are high enough for chemo. Don’t be jealous of the life, I know. Some guys have all the luck, move over Rod Stewart. If I could fix myself up… I… But it’s too late for me. We’ll find the perfect little place to go where we could run and hide. We’ll build a wall and we could keep them on the other side. But they keep waiting and peeking…. Many times we’ve been out drinking. Many times we shared our thoughts. But did you ever, ever notice, the kind of thoughts I got. Well you know I have a love a love for everyone I know And you know I have a drive to live I won’t let go But can you see it’s opposition comes rising up sometimes That it’s dreadful and position comes blacking in my mind And that I see a darkness. Did you know how much I love you Here’s a hope that some how you can save from this darkness 12:55 PM Tuesday, July 15, 2003   Sometimes you get fed up and frustrated. I guess this whole attitude is that woe is me crap, but whatever. The lack of control of your own environment drives you nuts. I get ideas sometimes, and I just think, yes that is it that’s the solution. It is frustrating. I get very obsessive compulsive about these ideas. There are days I don’t want to own the house any more I just want to walk away from all of it. I really like having my own place and stuff, but at times I just don’t care anymore either. It’s like if I could take my stuff break it all down and give it to the people around me and they could get use of it, and pieces of me would be everywhere, that would be cool. Kind of like seeing your estate distributed while you are alive. A santa clause thing I guess. There are Friends that have really helped and are still hanging in there with me this would be a way to say thanks now to them. I don’t know. Sitting here all alone you just think and think and can’t do much of anything about anything at all. That sucks. I knew I didn’t want to turn 30, this is a whole new decade and so far 30 sucks. 40, 50 I don’t even think of those as what is next. I mean I don’t like to think beyond what my next meal is. Part of me feels like all I have is what I had, and what I have now is just life in a holding pattern. When your health kidnaps you you have no choice. I guess it’s that part of the fight where you want to pack it in and give up. Hell what do I know. “Days like this I don’t know what to do with myself. All day, and all night. I wander the halls along the walls and under my breathe I say to myself I need fuel to take flight. There’s too much going on. But it’s calm under the waves, in the blue of my oblivion under the waves in the blue of my oblivion.” This is what it is. People say I don’t know if I could go through it, do what you are doing. What are your choices? You either do it or you don’t. If you choose not to, well you better be prepared to make some final plans, the ride is about to get bumpy. So you choose the rode they map out for you, it stinks. It stinks when you feel like you are a weight around people around you. Man why does it have to be so dark? If life could just go on, why stop for this all the time. It’s like slowing the whole game down. What’s that they say, well at least he went quick, he never knew what happened, oh to go in your own bed in sleep, peaceful. What do you say to the ticking time bombs, fight it man you are so strong, no I just got more time on the clock I guess. More time to know what is trying to take you out. We move so fast we don’t even think about when our number is up. I guess it’s something you can’t live with knowing. People can say whatever they want in a bad situation it never changes the situation. I guess I am just paying for being some jerk to people. The part that sucks is when you realize that everything you were sold when you were young is a lie. Study, work hard and you will succeed and have a good life. Why do people lie to people like this to kids. We grow up with false expectations. Then when it all falls apart in reality in our real life, we wonder why and what we did wrong. Ok if I am the only one, I keep wondering why did I end up like this a failure? Ok we go through the list of people that have a million things worse than me. But they aren’t concerned with how I feel in my head, and I can’t help them by anything I would say. I guess the dream was an illusion, and reality well is what happens. “Life’s what happens when your busy doing other thinks” John Lennon There are people that will stick with you through all this but what a drain on them this must be. Who wants to see someone out there and so down. Most of them are the people running along not looking down and having lives. This uncontrolled holding pattern sucks. 8:50 AM Saturday, July 12, 2003   "If I had a lot of money what would I do? I would buy a couple of motorcycles, a few air-conditioners and four or five couches." Bob Dylan 1961 1:52 PM Thursday, July 10, 2003   So I have been abusive here. I haven’t kept up with my journal. I guess I haven’t felt compelled since now that it is the 3rd month, you could almost go to the first 2 and know what I am going through. How many times should I write my white cells were low again today. But in essence I am wrong in that thought because at least there would be some kind of update, and then the journal serves its purpose because then you know what levels my blood are at! Well my whites aren’t doing bad, my platlets are crawling back up, my reds are ok. Once I get to 100 on the platlets I am scheduling cycle 4. This will hopefully be next week. Gee great hopefully. Well at this point there is less anxiety in a way having been through it 3 times already. I hope that I get the same level that I got for my 3rd month which was lower than my first 2 cycles. It made chemo sick week not as bad. But I did suffer a bit more than need be for the 3rd cycle. I stopped taking the anti-nausea pills on or about day 4 or 5. The pills help keep the queasiness away, but they put a cork in the other end. I am not about having constipation, hey this is a medical journal, I let it all hang out there. So to put off one of the side effects of the medicine, I stopped taking it to help my body flow, so to speak. Other interesting things from this month: when my platlets were low last weekend my dog jumped on my arm, I had 3 black and blues that ran down the whole inside of my arm. The bruises were very interesting looking, like I drew them there, little 60 pound bastard. I had 5 platlet transfusions this month and one 2 pint transfusion of red blood cells. I really lead a very boring existence here, don’t let me fool you. I am lucky the damn dogs hang out with me during the day, and stay awake part of the time. There is a strange phenomenon when you have too much time on your hands. I know when I was working it seemed like I was always busy, and I would still get things done around the house some how. But now with all this time on my hands, even when I feel ok to do things, I procrastinate, because you have nothing but time. The moral here is you get more done when you have less time to do it in it seems, ever had that happen? “Turn and face the strange changes. Ooh look out you rock n rollers. Ch-Ch-Changes. Turn and face the strange changes. Pretty soon now you are gonna get older. Time may change me, but I can’t trace time. I said that time may change me, but I can’t trade time.” David Bowie “Changes” All of this stuff turns into a time of loneliness and isolation. In the beginning people stay on top of contacting me. But when I stretched it out like now going on 6 months I am out there. It’s like because of the cycle of my illness I am grounded a lot, so I get left out of a lot of things. My energy isn’t all that either. There is not a whole lot of stuff I can do for myself outside of being alone at home. People will sometimes offer to do things and either I don’t have the energy or it is just hard when I have to make people go out of their way for me. The lack of independence sucks. If I lived in the city I could at least get around to different places. But when I got no one to go with me that stinks also. Maybe this is the way it is meant to be, I go into hiding for months and then it isn’t as big a deal if I am not around anymore. The old phrase you get sick and tired of being sick and tired. There is so much of my life that I have no control over it would be nice to get some kind of control over some aspect of it. But I don’t have enough control to get control of much of anything. I get to become a burden to all those around me and that is a pain in the ass. I just wish I could travel back 10 years, before all this and have a life again. No I don’t want to relive this part of the last 3 ½ years. Would I want it to end before all this, I don’t know. I just miss all the freedom I had, my life, fun, all that jazz. 10 years, yeah bring me back 10 years and leave me there for good. Then none of this would ever go wrong. I sit here alone depressed, is this the way it is meant for me? It apparently isn’t meant to be a long run, and I had some times in my life, now it seems all I do is live vicariously through my own past. 7:57 PM