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   Wednesday, December 01, 2004   1/6/05 So I owe some catching up to some folks I guess. So this will be the forum I put it in so that I can keep those that want to know in the know. Cause talking about it sucks. So for the past 3 monthes I have had an increase in "events" (read seazures). So I got an MRI on Dec. 10th. All I know is there is some kind of increase in some kind of contrast that can mean something. Because of the holidays and such my scan isn't getting reviewed by the tumor board until Friday Jan. the 7th. So that means I get a call tomorrow or Monday with their recommendations. My surgeon still has to review it (when they mention him, it's not a positive signal). Then I want to run their findings and data by one of my old doctors. That went to the west coast. What's the possible routing unknowns for me: 1. Another 1-2 surgeries 2. Radiation 3. More Chemo (the stuff I take every night isn't enough). 4. Some crazy highly toxic chemo stem-cell relaunch thing (Don't ask I might see if I could fly before this one). 5. Some other fun suprise behind door number 8. The day to day right now. I am currently working on applying for disability again. Where this part of the adventure takes me or how long I have no idea. I just know that going to work was taking it's toll on me. I could never get enough rest. I would wake up and have my left arm numb. I could tell even my left leg wasn't working right. My last dr. appointment he agreed with me with the increase in activity you have to have something going on up there. I am on 3 different drugs, 15 pills a day just to try to control my events and I still have them. At one point I knew what time of day was bad not anymore they are totally random. Watching tv, sleeping, talking, sitting, you name it yes even in the shower... no I wasn't doing anything funny, but I will tell you it is cold on that floor when you got to jump out of the shower. So this is my third run with this and I finally think I have that attitude that people preach about just be happy for the time you got, what's my next meal. I used to get all crazy about the bills, the money this, how to pay for that. Whatever, it so isn't about me. Maybe perspective is a sign of getting older. I have now accepted that I am classic rock. 12/29/04 I am so tired so tired. I have had my MRI, seen a Dr. about it I still have to wait for the official reading of the print in Jan. I have another Dr. appt 2morrow. It looks like I am going to go back out on disability again. I am so tired most of the time - it has nothing to do with my high carb diet. I don't know I am going to have to juggle it all again. Maybe I will just plan to move out of dodge. It cost to much to live here anyway. Find an area with good doctor's some milder temperatures and maybe I can live off the disability money. Use the equity in my house to buy a new one. Our whole area is retarded with housing prices. I am thinking very little snow a fenced in yard for a dog or 2 and hit the road. Plan it out make it right.... 12/1/04 There has been so much that has happened since I dropped the ball on my last blog entry. Quick punch list for the people that don't want to read a lot: I started working again. Started driving again - bought a truck (I love debt!). I met an insanely great woman in my life now. Went to Vegas again. Mad at my sister again (damn holidays). And I am again super paranoid for the next 2 weeks about my health. Hey it all can't be gravy! Now some details so you people that a.d.d., like me, tune out here. You people that love to get all the details and gossip continue. So back around March / April, an opportunity opened up at my old job and after discussing it with my doctor, we decided I should give it a whirl. I could always go back out on disability if I need to (need to). So after they fumbled the ball at the begining of May I was set to start June 1st, which gave me all of May to get some stuff together before I went back. Because I didn't have any time to do these things while I sat on my disabled ass! So I went back to work June first. Right around that time I met a woman through some friends. Who fit several qualifications that I was looking for. 1. Super-nice 2. Very Beautiful (ok that was a bonus) 3. Lives in town / drives and has a car (I mean come on this was a hit out of the park). We started going on a couple dates, and the FF on that is we are still super solid now. In fact we have only gotten better throughout the year. So work... it's work. Everyone said you happy to be back at work. What are crazy I am back at WORK. I was on permenant vacation. Yes super limited. Limited mobility, finances the works. But I didn't have to work. So am I happy I went back, I did need some new gadgets 40 gig Ipod - lost my palm had to replace it, had no car etc. So that part is good. It was funny when I started and within 2 blocks I have clothes stores, multiple duane reeds the works. I would go out on lunch shopping for stuff I couldn't get to at home. I didn't get a vehicle until I think the end of July. So for the first month it was funny I had system's down for how to get to the bus and back which included a lot of ride grubbing and walking when I had to, which most of the time was on the way home, which is all up hill, and about 3 miles, a good 50 minute walk, with no side walks. If I get old I am so telling this story with more torturous details (like it rained a couple times) Life by remote control. I mean the episodes, the aura's the sensations are freaky, imagine, and you can't trust me, that you do something that you don't control. If you stutter it would be like that a bit sometimes this will do that to me stuttering and slurring of speach, and I notice it. I get aura's or sensations and I know it's a good one if it makes my stomach turn. I mean the paranoia is practically paralyzing. I am just so afraid most of the time now to do anything. Especially before noon which the morning between 9-12:30 seems to be my hotbed of activity. I don't want to talk, I don't want to go anywhere for fear I might have to talk to someone and bang, I will be sitting on the floor in a store waiting for it to pass, and hoping it's a small one. Even sleeping on the way home on the bus (not on the way in-which since I wrote this has changed) has triggered activity, so I read and read and try to stay awake the whole ride home to try to avoid this (reading isn't safe anymore). You figure rest would help me. So my days are amazing even on the weekends I have been tired so I am sleeping a lot sometimes up to 12 hours (which I never did in my life, outside of being sick). I won't even want to go outside for fear my neighbor might talk to me and bang (it's happening). I have a constant fear of talking throughout the day. And I am a person known for talking a lot, it has changed me a lot living in this fear of communicating. I look down a lot and don't make eye contact, just one trick to try to avoid casual conversations, the ipod is good too, I always look like I am listening to something and that helps to avoid casual conversation. On top of anxiety, I am trying to find all my phobias new and old: Acrophobia - fear of heights (my whole life, nothing like being on solid ground - but I don't mind flying go figure) Demophobia - fear of being in crowded places (or maybe I just don't like that many people around me!!) Mysophobia - fear of germs or dirt (hey this stems from having a weakened immune system for 6 months last year) Meningitophobia - Fear of brain disease (had to add this one in) The weird part is I have always been a social person amongst my friends and in conversations, and very honest about myself and things going on in my life. Now, I am afraid to say anything because it might trigger an episode. And I can see people that know me, kind of looking at me and seeing that there is something different (or maybe I just know I am acting different). And time and time again conversations dwindle out to nothing, because I have nothing I can say. It is definitely isolating me once again. I always talked to much anyway. Misc. Quote 2 Corinthians 6:16 So we do not lose heart. Though our outer nature is wasting away, our inner nature is being renewed every day. For this slight momentary affliction is preparing for us an eternal weight of glory beyond all comparison, because we look not to the things that are seen but to the things that are un-seen; for the things that are seen are transient, but the things that are unseen are eternal. 1:46 PM Sunday, June 06, 2004   Ok medical stuff up top liquor and loose women in the rear. I only had a couple small facial seizures since the last update. But a lot of life changes: So I went back to work finally on last Monday. Everyone says hey you happy about it? Come on people I went back to work, not on vacation. Yes the theory of working again and getting my life back together is cool I dig that. But when that alarm goes off at 5:30am that is not cool at all, so it is back to the rat race. I work with a bunch of really cool people so that is good. So now I am going back to work, in a couple of weeks I might buy another vehicle, so yes I am going to spend all that work money! Well a brother has to get around being single, I need my player car! I just want to dig living again. I mean I guess my perspective has definitely changed this time around. I mean I don’t want to work all the time. I mean don’t get me wrong I am out of the house about 13 ½ hours a day working in the city and commuting and all. So by Friday I put in a solid 65 hour week out of the house. So working on the weekends on top of that has very little appeal to me. So if you are working in the city shout out to a brother soon for a quick lunch. I mean I am single again, I just want to have some fun this year. I want my freedom back and a normal life. I got the house still, I got a job again, I am just waiting through the next couple of weeks to make sure my health digs this working thing, and then I am going to jump into a car. “I made a deal with my conscious if my conscious didn’t bother me then I sure wouldn’t bother my conscious.” Etta James Cheating in the next room. Hey it is time to have some fun, just ask the kings of the blues: BB King Version of Let the Good Times Roll Hey everybody, let's have some fun You only live for once and when you're dead you're done So let the good times roll, let the good times roll And live a long long I don't care if you are young or old no no, get together and let the good times roll Don't stand there moaning, talking trash If you wanna have some fun, you'd better go out and spend some cash And let the good time roll Let the good time roll I don't care if you young or old, get together and let the good times roll Don't stand there moaning, talking trash If you wanna have some fun, you'd better go out and spend some cash And let the good time roll Let the good time roll I don't care if you young or old, get together and let the good times roll Hey mister landlord, lock up all the doors When the police comes around, tell them Johnny's coming down Let the good times roll Let the good times roll And Lord I don't care if you young or old, That's good enough to let the good times roll Hey everybody! Tell everybody ! That B.B. and Bobby's in town I got a dollar and a quarter And I'm just raring to clown Don't let nobody play me cheap I got fifty cents to know that I'm gonna keep Let the good times roll I don't care if you young or old Let's get together and let the good times roll 7:27 PM Wednesday, May 26, 2004   Everything happens for a reason, but no one ever tells you who knows the reasons. And why the hell can’t I pick some of the stuff that happens to me!!! I am doing my best to change my talkative ways. I mean some people just can’t handle honesty with stuff, and why even go there. I mean I am the one thing I can control, and how I react to other people. But we all do it, we let other people get under our skin and get to us. Most people are so oblivious to things also. If you were a stranger to yourself, would you be friends with yourself? I think most people would annoy themselves if they were looking from the outside in. People do the same things to me, they tell me things I don’t want to hear, but maybe that is the honesty that some friends need to have. I can’t live in the shadow of this crap anymore, but at the same time I have to be brutally honest with myself as to what I can and can’t do. Having low platlets exposes me to dangers I would normally not have, I could bleed to death in a lot quicker situation than most people. I mean they aren’t dangerously low but low enough to have to curtail my activities around it. I don’t know…. Lot’s of changes going on. I hope to have most of everything set up again to start reliving this year. I mean the last 17 months have been a vacuum that I have to make up for. I just want to get back to having some fun in life. I guess that’s my current goal, reestablishing my stuff and doing what I still have to do with doctors, but gearing my life back to having fun. I mean being single again, I can afford to get selfish. Now I have been selfish for the wrong reasons in the past. But what I mean is at my age a lot of people around me are already on their way to having their own lives / families, me I just want to enjoy what time I have on the clock. I mean you get jealous of people that seem to have it together, but then you got to just be happy for your friends that are living a great life, and try to encourage them to stay on that path. People will do what they want irregardless of what you try to convince them of. Nothing is guaranteed, we all know that or you really know it if someone tells you that you are facing a brick wall. So you got to grab at straws, and deal with it. I suffered last year, and I am sick of suffering, and sacrificing a life, that is for sure. I have made a lot of sacrifices to live this year. So I am trying to make plans and goals to shoot towards. No I am not the self-improvement Bob, I just want to try to gain some control over my situation and do things that I enjoy. Do I see other people involved in my life, not really. I just figure I am all I have to deal with. So I look forward to my own plans at this point. AC/DC Powerage (1978) She had the word Had the way The way of letting me know She knew the game Called the play Oh she hit me low She said, "Now you go your way I'll go mine And that's a start" Doctor, doctor Ain't no cure For the pain in my heart CHORUS: Gimme a bullet to bite on Something to chew Gimme a bullet to bite on And I'll make believe I'll make believe it's you Don't need no drink Don't need no drug Don't need no sympathy Sooner or later Send me a bill For what she's doing to me Operator Long distance lips On the telephone Come tomorrow Come to grips With being all alone CHORUS Gimme a bullet to bite on Something to chew Gimme a bullet to bite on And I'll make believe I'll make believe it's you Bullet to bite on Gimme a bullet to bite on Yeah cmon now yeah yeah bullet to bite on yeah yeah bullet to chew I need something to chew (bullet to bite on) I'll make believe it's you Gimme a bullet to bite on Oh, you're a bullet baby I want a bullet to bite on A bullet 12:36 PM Friday, May 21, 2004   If you don’t know Nick Drake you are missing out big time check this song out: Nick Drake Time Has Told Me from Five Leaves Left Time has told me You're a rare rare find A troubled cure For a troubled mind. And time has told me Not to ask for more Someday our ocean Will find its shore. So I`ll leave the ways that are making me be What I really don't want to be Leave the ways that are making me love What I really don't want to love. Time has told me You came with the dawn A soul with no footprint A rose with no thorn. Your tears they tell me There's really no way Of ending your troubles With things you can say. And time will tell you To stay by my side To keep on trying 'til there's no more to hide. So leave the ways that are making you be What you really don't want to be Leave the ways that are making you love What you really don't want to love. Time has told me You're a rare rare find A troubled cure For a troubled mind. And time has told me Not to ask for more For some day our ocean Will find its shore. 9:09 PM Monday, May 17, 2004   Willie Nelson Always On My Mind Maybe I didn't treat you Quite as good as I should have Maybe I didn't love you Quite as often as I could have Little things I should have said and done I just never took the time You were always on my mind You were always on my mind Maybe I didn't hold you All those lonely, lonely nights And I guess I never told you I'm so happy that you are mine If I made you feel second best Girl I'm sorry I was blind You were always on my mind You were always on my mind Tell me, tell me that your Sweet love hasn't died Give me, give me one more chance To keep you satisfied Keep you satisfied Little things I should have Said and done I just never took the time You were always on my mind You were always on my mind You were always on my mind.... Willie Nelson The Last Thing I Needed The post man delivered a past-due bill notice The alarm clock rang two hours late The garbageman left all the trash on the sidewalk And the hinges fell off of the gate And this morning at breakfast I spilled all the coffee And I opened the door on my knee The last thing I needed the first thing this morning was to have you walk out on me. Last night you came home late and I knew you'd been drinking By that old mellow look on your face I thought it don't matter, 'cause it's the holiday season And you filled such a big empty space And I laid down beside you, and I wanted your loving 'Cause your love makes my life complete And the last thing I needed the first thing this morning was to have you walk out on me. So excuse me for looking like my world is dead-ended And excuse me for looking like I just lost my best friend Excuse me for living and being forgiving so just go on if you want to be free But the last thing I needed the first thing this morning was to have you walk out on me. So I have been meaning to get to more writing I have been carrying around a couple posts in my head for a week or so. Families, you don’t get to choose them and you don’t get to control them, what fun is that? For anyone that doesn’t know my sister, know this. If she EVER loans you something, don’t even bother using it, just store it for her for when she wants it back. I will give you 3 examples of this theory, and I promise I haven’t made this bit up. I am funny, but not this creative! So when we lived together she once asked for some old rock records that were hers from years ago, just because she wanted to bust my balls, not because she had any interest in them at all, she liked club music. Fast forward they were going to Disney world and her husband had given my father his old beat up electric shaver, because it wasn’t working right, he had gotten a new one. He also did not provide a cord so you could charge this busted shaver. It’s usefulness a big whopping zero. So back to the Disney world thing, when they were getting ready to go he asked my father for the shaver back, because the one he got to replace the one he gave away wasn’t working right anymore. Well this old beat up shaver is somewhere in a dump decaying for the next 1000 years so this item was not returned. Now when she got married originally she had a cat. To shorten this epic saga, the cat didn’t work out so she gave it away, she did not give away the cat carrier with the cat just dropped it off. So there in was this non-needed cat carrier case. I had 2 cats, got a third, and the case was routed to me for my third cat. One cat per case I hope you are following this. So what’s that you say? Yes, she got a new cat and wanted her case back. What’s that you say, they sell them everywhere, yes we know that. So I took the high road, I hope, I said ok I will go home and figure out which one is hers and re-route it to her via my parents. She called back to my parents and said, mine is the pink one. So when I get rid of my third cat she goes in a cardboard box with holes in it to her new home C-YA! Don’t say I didn’t warn you. I think she has old stuff stored all over the state with different people. No thanks I don’t want your old stuff anymore. I will just go buy my own shavers vinyl records and cat carriers. And if I gave you anything that I didn’t need anymore I won’t ask for it back. P.S. I think I still have one of her vinyl records. Ok now that that is off my chest. Medical stuff. Thursday May 13th 11:00 am and 6:30 pm Facial Seizure again it began with a little ticking in the face, then it stopped for about 5 seconds and then it went on for about a minute this time, it seems to linger a little at the end with some eyebrow ticks at the end. The first one happened during an EEG for Dr. Pacia which is used to trigger seizures, and I was hooked up to a machine during it and he was able to analyze the brain waves during it. This is the first time I ever had 2 in one day. So I was pissed about the fact that I had 2 in one day, but I am going to discount the first based on the test. From what Dr. Pacia was explaining to me, we seem to have the “events” isolated to such a small region that it seems to not be near my leg or arm controls at all, just some facial controls. So the thought is that there is there might be a tiny little piece of possible tumor material in one small place. Or maybe just some messed up post op trauma left over. There is no way of knowing for sure what is going on unless you pop the hood and go in surgically and this doesn’t call for that type of action. I guess if you have to have them this is the ideal to have them in such a small spot. So I inquired about the ability to drive and he said that technically he didn’t see a reason why I wouldn’t be able to. I was debating getting a scooter like the messengers have for getting around. First of all it is hard to shop for something when you can’t get around to each dealer to dealer to actually see things. Second of all my doctor pointed out a valid point if I take a fall off one of these things, and my platlets are low from my maintenance chemo, I am going to BLEED. So I left the doctor and these thoughts all ate at my brain. One friend drove me to the bus to go to NYC in the morning. Now granted she had made the offer to drive me and lives near me so it isn’t a real biggee. But when she got on the bus she said well yeah I had to get up 15 minutes early to pick his butt up. The comment was made out of jest, I feel bad enough having to mooch rides off of friends to get things done, and I can’t get a lot of things done all the time. I have to wait until I can latch onto another trip to do a couple of things. The only way to keep on top of this is I keep a things needed list on my palm pilot, and if I do get to the store I try to go through my list. I get to the food store now like every week and half to 2 weeks now, so I have to stock up when I go. The bummer is it is not easy to always keep fresh fruit and stuff on hand. I am trying to eat healthier again with more fruits and salads. So then on the way home I got a ride from another friend who was taking an earlier bus. Again the stuff the doctor was talking about was weighing on me and I was thinking about it. I hadn’t slept good in 3 days because of a heat wave we had. On the bus ride home, the second facial seizure hit me. I kind of bugged, I was in a chair next to my friend who was sleeping, and I just waited and it faded away after about 45 seconds. But this was the first time I had had 2 seizures in one day. I used to think if I had one then I was safe for the rest of the day at least. Not so anymore. Remember life will change all the rules. So I was just piling on the things to debate and think about on my traffic ridden commute home. So when I got home that night my neighbor told me he got a biopsy back and he has skin cancer, my stomach sank. I can’t stand this monkey. I mean I fought this mother-you-know-what, and now I am having a friend get hit right in front of me. So I have gone in to super action trying to help him get to a doctor to get checked out. He is in a bad situation because he is out of work with no income, no benefits, and a serious health issue. I have narrowed it down after a lot of phone work to a clinic in Morristown where we are going to try to get an appointment tomorrow to get to see a doctor and to apply for assisted treatment. I am glad I can do the leg work via the phone to try to get him on the right path to getting treatment. The worst feeling is when things are out of your control and you can’t do anything about them. When you can actually work a phone and get someone help it is a good feeling. At least I can hopefully get him in a place and avenue to get some treatment. So Friday and Monday morning I did all this research. Friday afternoon I got picked up by a friend to go see his band play. We went out to his house and him and his wife made a kick butt bar b-q and we ate like pigs. Then we went to his gig. Man hole in the wall bars are all the same. His band was good, biggest problem was the group of air guitar playing guys that danced between me and his band, um, no I don’t want to watch men do shots and get drunk and sing songs. I suggested a couple of bikini girls on each side of the band dancing for us to watch. I mean ZZ Top does it and it works. We got done there and I stayed over my friends’ house Friday night. Then Saturday we got a late start, we were out a little late?!?!? Then we did lunch hit best buy then watched TOTO in high definition. Over all it was a very constructive day. Then I had my parents pick me up to go with them to the VFW. OK wake up here we are at a point of contention with my sister again. Now she had planned a birthday party for my one niece for Sunday, and I hadn’t planned to attend, the whole driving thing maybe? Anyway what I did want to attend was my father was becoming the Commander at the VFW for this next year. Don’t worry my sister didn’t come to support him, but by default of not being able to drive home myself. I did get to go to her house to see my 2 nieces, which I do like to do, I was a little upset about that one way street thing, with oh, why should we show up to something to show our father support. But whatever, my purpose has been served. I supported my father because I wanted to. I got to see my nieces again which was nice. And she got her pink cat carrier back. I guess it was a homerun. I guess what is really eating at my brain is still the meeting with my doctor where he said that technically I could drive. I am just reaching a frustrating crossroads again. When I was over my friends’ house, I mean this guy works hard, but he also steps in luck all the time. He has a great new townhouse that has almost doubled in value. A company car, a corvette, the same truck as the queer eye for the straight guy’s have (but insists at least his is a different color – hey don’t explain to me, I don’t have to put fuel in it). His wife is a 10 – I mean really nice to him always supportive, she is about 5 months pregnant I mean the sun isn’t any brighter for this guy. I try to remind him not to take his life for granted when he is busy running around in it. He is a great friend though and always helpful for me. The point I am getting at is I was at his house, and I couldn’t sleep past like 8:30 am so I was thinking and I was just so frustrated that I couldn’t have my own freedom at all. I mean when I go out I am always trying to work angles to have rides around. And to get to point a to b and home again. It is also getting old to the people around me I think. I just wish I could complete my picture right now with having the freedoms I would like to have. The sacrifices are getting old I mean I haven’t been on the road for almost 18 months. And when the weather gets nicer and I see people out on their motorcycles it kills me, especially hanging out in bars, because to me bars aren’t that exciting, but when I did hang out at them, it became a lot of fun to plan long ways to get to them and then some other long way home. And if the inside of the bar got boring, I could always just go outside and stare at my bike. I just want my life back. Some kind of beat around truck, and a home run would be having another bike. All this is hung up in my head right now. It’s driving me nuts. I am single and kind of still in limbo with my life. I know I am throwing a lot out there and bitching and all that I get it. If you are still awake enough to be reading this wow…. For a guy that doesn’t drive I was away from my house from Friday afternoon until Sunday. But the flip side of that is all the times when I need things and I can’t get them for days on end, and I just have to deal with it. I wish I didn’t have to sound so bitter. I mean I guess I am just reaching the point where I am feeling better and I want to have the freedom to have a life on my own terms again. I don’t think anyone would want to be grounded like they were 15 again. Try giving up your car for 18 days. You couldn’t do it, try 18 months. 9:18 PM Wednesday, May 12, 2004   Ever wake up on the wrong side of bed? I have it happen a lot in a semi-sleep stage I am thinking of things that are just bothering me. Not-necessarily bad dreams, but let’s say emotional scenarios. I usually just cure them by getting up so I don’t think about it anymore. But it can set up a mood for a day though. Yes, today is one of those days. Then you try to sort out the meaning. Like sometimes the people involved in the dream aren’t even the right people in your life but, actors in place of the right people. So you have to take the scenarios and try to crunch them with current life events. I mean damn even Billy Hector was in this dream. No I haven’t figured out the dream from this morning. I think it was a combination of different people and different needs and wants. I mean she kept asking me on the phone what do you want from me? Like I had a choice over who was in my life and what they were like? Go figure. I think the movie Weird Science was on to something. If you can’t remember it, screw you you young-un. The whole scenario was twisted like I left her at a Billy Hector show. I mean rule number one, I would never leave a Billy Hector show, I would leave a woman before Billy. Just the facts Jack, then I was out in my friends vette and she called me on the phone asking me what I wanted from her. And she only went to Billy Hector to appease me. That pissed me off the most. How do you insult Billy? And think I want to talk to you any longer? Just strange I don’t have any resolution from the dream. But I guess that is just a bachelor side effect. I mean I am always making a joke that I need a girl with a car (or in the city she needs a metro card). So maybe that is the whole scenario. Who knows. People ask when do you think you are going to drive again? I mean if you don’t want to drive me around any more let me know I will put you on the do-not-ask-for-a-ride-list. Truthfully I just have no desire to think about a time when I will have that freedom again. I mean do I miss driving and the freedom with it. Hell yeah, the problem always hovering over my head is knowing that something could happen to me at any time either with a couple second warning or without. And it could just be me or others that I can hurt. I mean it sucks. Even if I had 6 months clear which is what the doctor wants, I still don’t believe in my safety in driving. But since I am lucky to go a week to a month free from activity, I just don’t even think about it anymore. I really miss having a motorcycle. I see guys out riding and just having the ultimate freedom of just getting up and going out to nowhere for who knows how long. It used to be great just making random turns trying to get lost. That was another time for me another place. Even driving to get what you need done. But forget all that. This is the hand of cards I have for the time being. 11:18 AM   Beach Boys – “I Just Wasn’t Meant For These Times” From Pet Sounds (if you don't own it, why don't you?) I keep looking for a place to fit Where I can speak my mind I've been trying hard to find the people That I won't leave behind They say I got brains But they ain't doing me no good I wish they could Each time things start to happen again I think I got something good goin' for myself But what goes wrong Sometimes I feel very sad Sometimes I feel very sad (Can't find nothin' I can put my heart and soul into) Sometimes I feel very sad (Can't find nothin' I can put my heart and soul into) I guess I just wasn't made for these times Every time I get the inspiration To go change things around No one wants to help me look for places Where new things might be found Where can I turn when my fair weather friends cop out What's it all about Each time things start to happen again I think I got something good goin' for myself But what goes wrong Sometimes I feel very sad Sometimes I feel very sad (Can't find nothin' I can put my heart and soul into) Sometimes I feel very sad (Can't find nothin' I can put my heart and soul into) I guess I just wasn't made for these times I guess I just wasn't made for these times I guess I just wasn't made for these times I guess I just wasn't made for these times I guess I just wasn't made for these times I guess I just wasn't made for these times 11:09 AM Thursday, May 06, 2004   Lou Reed Vanishing Act From The Raven It must be nice to disappear To have a vanishing act To always be looking forward And never looking back How nice it is to disappear Float into a mist With a young lady on your arm Looking for a kiss It might be nice to disappear To have a vanishing act To always be looking forward Never look over your back It must be nice to disappear Float into a mist With a young lady on your arm Looking for a kiss For all you medical vampires, just the facts: Monday April 26, 2004 Facial Seizure again it began with a little ticking in the face, then it stopped for about 5 seconds and then it went on for about a minute this time, it seems to linger a little at the end with some eyebrow ticks at the end. Wednesday May 5, 2004 6pm Facial Seizure again it began with a little ticking in the face, then it stopped for about 5 seconds and then it went on for about a minute this time, it seems to linger a little at the end with some eyebrow ticks at the end. My last MRI scan from April 15th was clear. I still have a hole in my head!! I spent another Wednesday at the Cancer center getting my blood checked, my platlets are on their way down, no surprise there. Now the volunteers have become chummy with me. I think I have to surprise them with my killer chocolate chip cookies, what those women don?t know I can do in the kitchen. I dreamed about your house today I was passing by the exit on the highway that led to where you lived and I dreamed of a better time with less worries where we spent our time growing up together the innocence of it all will never be here again. I mean we went through our growing pains. But if I ever get a situation half as good I will have a better life. Granted if I don?t screw it up again, I want a clean start. I don?t want to drag any luggage in. I want an honest situation where we don?t hold things against each other...... I think we can all relate to these types of memories. I guess its just one of those side effects of getting old. I dwell on it then I try to make myself realize that I am the only one that can change my situation but at the same token I am limited with what I can do I just have to work around my situation it?s like my biggest sale of my life is me. I am sorting a lot of baggage out right now. I am trying to revamp and get used to bachelorhood again. I have to admit it is nice to only worry about myself, who am I kidding, I have always just worried about myself. I am trying to clean out the attic right now and take inventory on where I am at, and what I have going on. I am learning to live with borrowing, begging and bumming rides where I can. I will do what I have to do to survive. A year ago I was sick as a dog, I went through that to get to this. So I am just trying to simplify some stuff nowadays. I guess I have been introspective a bit lately. I can?t believe some people still read this thing, but if I don?t update it, sooner or later I get complaints. Well there is a lot more going on, but not everything I am going to write out right now. Not even too much on medical stuff, but just life stuff. And the ending of friends has me crushed ? NOT. 9:26 PM Thursday, April 22, 2004   4/21/04 People will keep you guessing. You do what you can, I mean I guess I can be overzealous with things. It is interesting to reflect back to the hell I lived through last year. I guess still being above ground is the common goal here, hey you can only avoid death for so long eventually it wins. I guess a little of what has me nuts is being in the middle of a lot of moving pieces right now. I am going through the end of a relationship which has been ending for at least a year now. So now I have to re-set up my house for just me. I have been in talks with my old job about going back to work. Sometimes it just feels like all the crap has to happen at once. Like there?s a secret society that makes sure that the shit hits the fan all at once for everyone. I used to feed off this type of energy now I am not used to it. I feel like I have all these plates in the air. Oh well I guess it?s like everything else just deal with it the only thing I can control is myself in this whole situation. Everything and everyone else needs to just get inline. I hate being at the mercy of relying on other people. But it is good to have some friends to help. Imagine not being able to come and go as you please. I mean your whole life you get in the car and go about your life. Then imagine having to eat a big piece of humble pie and having to ask someone to help get you around. Imagine that... You can't. I see people come and go in and out of the cancer center. I can see the look. I know the look all the subtle things, that you might not notice I pick up on in the pain of these people. Even outside of the center, I can pick them out sometimes. Why is that lady wearing that bandana, no she isn?t Sinead O?Connor?s mother, look at the bags under her eyes, you can read the pain. It?s amazing what people will go through to breathe another day. And then the lesson in perspective, this is where I was at last year at this time, what a difference a year makes: 5/3/03 Ok so it took me 2 weeks to get back to this update. My excuse, when you feel nauseous you don?t want to write about it. So Mo went out with some friends on Friday the 18th, which left our hero, your truly up to his own devices. And what does this crazy ex-biker do? Take a shower and pop popcorn in the microwave and put in a dvd of Swingers. So there I am me, the 2 dogs and the warm glow of the TV. All of sudden in the scene where they are in the trailer with the two girls, my left eye starts twitching. I can?t believe it I am having another seizure. I turned the TV off, grabbed the phone and laid face down on the bed. Fortunately this one was only a facial one and was relatively quick. It still left me feeling nerved out. Needless to say I wasn?t in the mood to watch this movie anymore. I went to sleep a little while later. So you think that would be it right? Well the next day Mo and I were on our way to WalMart I think, right there in the car, facial seizure number 2. OK no they don?t get more fun. But who knows, maybe they will. So here we go with round 2 start up. April 21, and 22 I went to NYU for Chemo injections. I also at the same time take oral chemo for 5 days, morning and night (Monday ? Friday). So I got back Monday night, I knew I would be able to get dinner in. I had Uncle Bens rice. I didn?t want to experiment with anything too much, since I might see it again. So about 8:30 I started to feel a little queasy. I knew this was going to happen. About 9:20 I knew it was time to go. I headed upstairs, I was staying by my parents, I don?t have an upstairs. Well I am glad I knew it was time to go. Well Uncle Ben came back to visit. I continued to pump my own stomach every 20 minutes for 2 hours. By the 5th or 6th time, I had nothing left. This was around 11:30 and I finally fell asleep. First day over! Second day back to the city for the second day of injections, how am I feeling? Cruddy. Well this is what I am supposed to feel for a week. My doctor thinks that if my tumor reacts like my body we are in good luck. My doctor let me know also that he is leaving NYU in September for the University of Southern California. Now most people would be upset about this. But here?s my perspective. My chemo will be done before that. And Bob don?t want no more of this torture. So I am done, out, finished. So, he can go and I will go back to work and life. That?s what I am thinking at least. So we left the city. I went home and just sulked, eating very little. I stayed in bed from Wednesday to Friday basically. I found that this time around I was a lot more sensitive to smells. From food cooking to perfumes, it all smelled bad. I mean me laying around in bed taking toxic chemicals, you know I smelled good. But just because I laid around all week that didn?t mean it was an uneventful week. You know I would never be that boring. Thursday night Mo got home and I was pretty run down feeling sick, I tried to eat chicken nuggets we had from the super market, I wanted to eat but everything tasted bad. I was walking from the bedroom and I wanted to walk back to it, just figuring I would just go back to laying down. But then I started walking in a circle. I didn?t know why. Just circling in a small pattern like around a 1 foot diameter. Mo thought I was just being wacky. Then it h it me SEIZURE. I said Mo, help me. I just wanted to get down to the floor. Now I was sitting and my arm was flailing around in a circle. Man that was freaky. None of this was under my control. Then I wanted to lay on my stomach. I think I told mo this or motioned. I had a pretty intense one. I was trying to tell myself to STOP. It is a mind trick I try to use. I don?t know if it helps or not. I was foaming from the mouth, face in the carpet. My eyes were blinking, or I was flicking in and out of wakeness, I still don?t know. I was trying to say stop in my head which was skipping like a broken record, but that wasn?t working, so then I just started praying I would black out. It did let up. I think the whole thing lasted probably no longer than 2 minutes. It seems a lot longer while it is happening. When it was done I was very stiff. Mo?s foot was under me and I wanted her to move it but I was like dead weight and she couldn?t move me. I lifted a little and she pulled her leg out. I sat up, trying to gain control of my senses and to calm down, my left arm was completely numb. I lifted it and it just dropped. I couldn?t control it or feel it. But then I felt the tingling of feeling come back in. I think this arm got wedged under me during the seizure and probably lost blood flow. So feeling came back, but the arm was weak and fatigued. I felt like peeing so, I went to get up and walk to the bathroom. I was hobbling along though. My left leg was very fatigued also. So I took more med?s and got on the phone to my seizure doctor, or whoever was on call. So you call the number and get the phone service, you tell them you need the doctor, they page him or her, and they call you back. So I told him the whole run of events, and he said well I want you to go to the emergency room and get a CBC (blood test) and a cat scan. So the timeline here: seizure at about 7:00. At the ER probably 8:15. I got out at like 2 am. Another fun evening with Bob. Mo drove me to Morristown?s ER, she stuck around till like 9pm, hoping for some ER action. None for her. My father met us there and stuck with me till I got released. 10:58 PM Monday, April 12, 2004   Sometimes you are just feeling the blues I guess. And then sometimes you just don’t even want to dwell on it, even though you got it. That’s where I’m at, I want to write in here but I don’t want to come off as being all self centered. Sometimes you just need to be reminded of some kick ass people in your life. It’s like that night when one cd won’t do, you would dig a combination of tunes. Dexter Gordon and Miles Davis mellow jazz. Lou Reed introspective stuff. Stones bluesy stuff. Even dusting off the old self loathing Cure stuff comes in. And let’s not forget Bobby D. You know, Dylan. Man we got 4 days of rain coming. Springtime is here. And just because I am in this mood I am throwing out a pile of lyrics with no titles or authors….deal with it: I ain't too good at conversation, girl, So you might not know exactly how I feel, But if I could, I'd bring you to the mountaintop, girl, And build you a house made out of stainless steel. But it's like I'm stuck inside a painting That's hanging in the Louvre, My throat start to tickle and my nose itches But I know that I can't move. I know this song With this one really killer line I don’t remember it exactly But it slays me every time It’s on the jukebox there I know it’s number 55403 Go put that song on for me won’t you And make Gracie think of me Come over here from over there, girl, Sit down here. You can have my chair. I can't see us goin' anywhere, girl. The only place open is a thousand miles away and I can't take you there. I wish I'd have been a doctor, Maybe I'd have saved some life that had been lost, Maybe I'd have done some good in the world 'Stead of burning every bridge I crossed. Desperado, oh, you ain’t gettin’ no youger Your pain and your hunger, they’re drivin’ you home And freedom, oh freedom well, that’s just some people talkin’ Your prison is walking through this world all alone Just wanna be that someone you weren't looking for Some nameless fascination that showed up at your door And when you're sad and blue my jokes still make you smile And I could be with you awhile Heal me with your laughter Make me smile honey, it’s been days Hold me in your arms now Lock me in your gilded cage Hold me till you heal me baby, Fix my hearts gaping hole Fix me babe I’m broken, Like that screen on your back porch you are a china shop and i am a bull you are really good food and i am full I woke up today to find myself in the other place with a trail of my footprints from where I ran away it seems everything I've heard just might be true and you know me (well you think you do) sometimes, I have everything...... yet I wish I felt something do you know how far this has gone? just how damaged have I become? when I think I can overcome it runs even deeper in a dream I'm a different me with a perfect you we fit perfectly for once in my life I feel complete (and I still wanna ruin it) afraid to look as clear as day this plan is long been underway I hear them call I cannot stay the voice inviting me away I close my eyes, you reappear I always carry you inside, in here I fall asleep, you come to me And once again our love is real How could I have let you get away Why couldn't I have found a way to say Tu eres el amor de mi vida (You are the love of my life) Si solo te pudiera encontrar (If only I could find you) Con todo el corazon te diria (With all my heart I would tell you) Tu eres mi amor de verdad (you are my true love) I look outside, I know you're there And you've found a brand new life somewhere I only wish it had been us But I'm happy for your happiness How could I ever let you go How will I ever let you know 10:30 PM Wednesday, April 07, 2004   Got Seizure? Wednesday April 7, 2004 6pm Facial Seizure again it began with a little ticking in the face, then it stopped for about 5 seconds and then it went on for about a minute this time, it seems to linger a little at the end with some eyebrow ticks at the end. Hey when you got it you got it. So I feel like I am missing the boat. Come on I mean here I am a head-case, and the only drugs I am on is to prevent me from having seizures, chemo, and vitamins. I mean this blog would be twitching if I didn’t take those drugs, I wouldn’t even have time to write, I would never stand still enough. But seriously, I am not supposed to drink, I have never like “recreational” drugs, how about a little something to take the edge off, and keep me relaxed more. I mean I am not about the whole hip to be on prozac thing. I mean I had valium in the hospital, and I thought I was on the love boat. But who needs to be addicted to something on top of needing to take some drugs. But I think it is time for me to research a little something something. You know make the world a sunnier place (picture me mowing the lawn in the rain, shoveling snow that doesn’t exist). I mean I might just turn into that weird old guy that lives alone in the neighborhood that all the kids talk about. You know the one, every neighborhood had one. And it will be like on the Sopranos it will be the telephone game. My neighbor’s parents know what is wrong with me, and they partially explain it to one kid, then that kid tells it to another and by the time it is done, I am a former ax murderer who is on the child molesting protection list. Go figure why they steal my tulips in the spring. So I go to get my blood checked today. All levels were up, I promised the doctor I would try to screw that up before I see him again in 2 weeks. Well on Wednesday there are volunteers in the cancer center in Morristown Hospital that set up a little spread of coffee cookies juice fresh fruit a guy playing the piano it’s a nice little set up. So after my appointment I had some time to kill (don’t we all) so I went over got some doughnuts and cookies and sat down at a little table. SO I was eavesdropping at a table next to me and everyone was comparing illness’s like old war stories. I said to myself now isn’t this a morbid group. So then this guy comes over and sits at the table, and now we are on! It’s our turn to swap stories. I swear it was like that retarded thing they do with timed dating / talking whatever they call it. So it turns out I had to kick out some history on myself. Turns out his wife was in for treatment and he was waiting for her. He was a real nice guy, his wife well let me skip to the end. She comes over and looks right at him, let’s go we have to be somewhere and they storm off. Oh yeah nice to meat you too. I got dumped on at the cancer social. Next thing I know I am eavesdropping on one of the volunteers talk to this guy about her golf club. Then I said to myself, I don’t get sports number one, and golf, no way, and she belongs to a club. Just as I figured she has nowhere to be so she does some good for people, but to have to hear about the golf club yadda yadda. That’s when I realized it was time to move on. 7:18 PM 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 Thursday, April 01, 2004   2 new songs from Warren Zevon's last record (for those of you who don't know about this joyful record, he made it while he was dying from cancer - very uplifting - you should hear the version of knocking on heavens door) Enjoy. Warren Zevon She’s Too Good For Me From The Wind I could hold my head up high and say that I left first Or I can hang my head and cry Tell me which is worse If you go and ask her why She might say she's not sure Trust me when I tell you I'm not good enough for her I want her to be happy I want her to be free I want her to be everything she couldn't be with me I'd wait here for a thousand years if she'd come back to me I have everything she wants but nothing that she needs I want her to be happy I want her to be free I want her to be everything she couldn't be with me I could hold my head up high and say that I left first Or I can hang my head and cry Tell me which is worse If you go and ask her why She might say she's not sure Trust me when I tell you I'm not good enough for her Warren Zevon El Amor De Mi Vida From The Wind I close my eyes, you reappear I always carry you inside, in here I fall asleep, you come to me And once again our love is real How could I have let you get away Why couldn't I have found a way to say Tu eres el amor de mi vida (You are the love of my life) Si solo te pudiera encontrar (If only I could find you) Con todo el corazon te diria (With all my heart I would tell you) Tu eres mi amor de verdad (you are my true love) I look outside, I know you're there And you've found a brand new life somewhere I only wish it had been us But I'm happy for your happiness How could I ever let you go How will I ever let you know Tu eres el amor de mi vida (You are the love of my life) Si solo te pudiera encontrar (If only I could find you) Con todo el corazon te diria (With all my heart I would tell you) Tu eres mi amor de verdad (you are my true love) Tu eres mi amor (You are my love) Tu eres mi amor (You are my love) Tu eres mi amor de verdad (You are my true love) Tu eres mi amor (You are my love) Tu eres mi amor (You are my love) Tu eres mi amor de verdad (You are my true love) 1:14 PM Wednesday, March 31, 2004   3/31/03 So my public service message is that everybody’s hard drive crashes once in their life. And yes mine finally did. Don’t fear I saved all the digital pictures, most of the songs awaiting compilations. I had one cd that I burned that was labeled doctor folder. Don’t ask me how but in this crash none of the doctor records I kept came over. Weird freaky occurrence, or screwed by the machine. I like to think screwed by the machine. I had all sorts of charts including all my seizure activity for the last year and a half. So I am kind of pissed about that if you must ask. Back your shit up! This is the end of my public service message. Dell’s help in India (the calls are routed to India if you didn’t know, are hit and miss). And I missed this week and a month ago when this was breaking down. Nobody there trouble shot this stuff with me, until it really exploded. Thanks Dell. I did get a very helpful woman today. Lost all my bookmarks, what a pain in the neck, I don’t suggest this as a hobby. And no I won’t help you when it happens it sucks. Nothing much else new this has been my obsession for 2 days. I had a little seizure on Monday again. Flashback to this time last year, I was finished with my first chemo cycle and awaiting my second cycle which got pushed back because of scheduling confusion with New York. Hey I was in no rush to be punished. It got me sick, and my body hated the stuff. Still does. Consider this no joke: Alice Cooper Lost In America lyrics I can't get a girl cuz I ain't got a car I can't get a car cuz I ain't got a job I can't get a job cuz I ain't got a car So I'm looking for a girl with a job and a car Don't you know where you are I am searching for all single ladies with a car!!! 8:08 PM   Alice Cooper Lost In America lyrics I can't get a girl cuz I ain't got a car I can't get a car cuz I ain't got a job I can't get a job cuz I ain't got a car So I'm looking for a girl with a job and a car Don't you know where you are Lost in America I got a mom but I ain't got a dad My dad's got a wife but she ain't my mom Mom's looking for a man to be my dad But I want my mom and dad to be my real mom and dad Is that so bad Oh, I think I've been had Lost in America Well, I live at the 7-11 Well, I'm tryin' to play this guitar Well, I'm learning "Stairway to Heaven" Cuz Heaven's where you are I can't go to school cuz I ain't got a gun I ain't got a gun cuz I ain't got a job I ain't got a job cuz I can't go to school So I'm looking for a girl with a gun and a job Don't you know where you are Lost in America 7:30 PM Thursday, March 25, 2004   Bob Dylan If you see her say hello Album blood on the tracks If you see her, say hello, she might be in Tangier She left here last early spring, is livin' there, I hear Say for me that I'm all right though things get kind of slow She might think that I've forgotten her, don't tell her it isn't so. We had a falling-out, like lovers often will And to think of how she left that night, it still brings me a chill And though our separation, it pierced me to the heart She still lives inside of me, we've never been apart. If you get close to her, kiss her once for me I always have respected her for busting out and gettin' free Oh, whatever makes her happy, I won't stand in the way Though the bitter taste still lingers on from the night I tried to make her stay. I see a lot of people as I make the rounds And I hear her name here and there as I go from town to town And I've never gotten used to it, I've just learned to turn it off Either I'm too sensitive or else I'm gettin' soft. Sundown, yellow moon, I replay the past I know every scene by heart, they all went by so fast If she's passin' back this way, I'm not that hard to find Tell her she can look me up if she's got the time. If you are just here for the medical stuff let me get it out of the way. The rest is all about Bob … so either read it or don’t…. So last Saturday I had a short facial seizure. I started my second round of maintenance chemo yesterday. I hate that stuff. I was all queasy like this morning. Picture not going out drinking but still having that morning after stomach. So I popped some more drugs and waited to have breakfast. I didn’t even want to sleep last night for fear of waking up sick, so I stayed up watching bad movies and waiting for it instead. Great logic. So I have 6 weeks of this now. It’s all in the drugs to mask the other drugs effects. I have been getting records transferred to a new doctor I am going to try next month. So I have 2 doctor’s appointments and 1 MRI in the city and 2 doctors appointments in NJ should be a fun month. That’s the most of it right there…. So if you were just keeping medical score punch out now. If you are staying then I am going to abuse you with my rambling… So I am really hanging in there with reading the New Testament. But the editor should have mixed up the beginning a little. I mean Matthew, Mark, Luke, and then John. I am reading every angle here. I mean I don’t mind it, and no I can’t write a better book, but I am glad I am going on to a new section after this the acts. No, really I was brought up very religious and know all this stuff. Which reminds me all you Sopranos hatters, shut up. You write a better TV show. Now I will give you the guy that wrote it is a grade A wacko, but it is still a great show. People want the world. But it is like going to Disney land instead of Disney World, and bitching about it. Come on beating up landscapers, good stuff. Shut up and watch it. Enough about TV for now. Hey here's a flashback to where I was one year ago this week, I guess things do get better (who are you lying to they go in cycles) Saturday 3/22/03 - Bob-in-a-bubble I wake up around 5 am I am burning up. I take my temperature. 101.1. I go back to sleep, or at least try to 6 am I check again 101.3 ok it is on it’s way up, time to call the doctor. I page him via their service. I totally woke him up. He says ok what I need you to do is go to the emergency room and tell them that you are my patient and I told you to come in. I said Doctor I have one question. Can I go to Morristown Memorial Hospital in New Jersey (so I don’t have to drive to NYC, and we were planning on me working with doctors from there). He said yes yes what am I thinking go there. So I grab my bag that I already had packed, we got in the car, and drove to the emergency room. Do you really care about all these details? Hey it’s a total trainwreck blog, so you are going to get them, and it makes going to work seem like a cakewalk eh? So I check into the E.R. They brought me to my own room with it’s own air circulation to protect me from any germs in the E.R. So they send in a doctor, I exlplained my case, he said that they would take some blood and I might have to be admitted, depending what the local oncologist says. This whole time I know I have to be admitted, it is not safe for me in the real world. A little side note here, with no white blood cells, which I didn’t have I am in danger of everything and all food has to be carefully and fully cooked. This means no eating out and not raw fruits and vegetables. So they send in the vampires and I am a little dehydrated, so my veins are hiding. They need to put in an IV and get blood cultures (to check to see if there is any bacteria in my blood that could be jeopardizing my health with no white cells to defend myself. So they try on my left arm, they stick the needle in, and burn burn burn, man I know what I IV’s feel like and this is wrong. So she admits that that one did not take. Great here we go again for the hand. Ouch, damn she’s got it. So now she takes those typical little jars to check your blood. Then she has these other 2 clear bottles that look like Coronitas. You ever see them, some Mexican places use these small Corona bottles as salt shakers? I mean the size of like an A1 bottle. She fills both of these ½ way with my good stuff. They are vacuum sealed so I hear and feel my blood bubbling into these, very grouse. The nurse stops in in like 10 minutes after this whole stick and bleed and tells me they have to come back for more. Blood cultures have to be taken from 2 different places just in case the needle picked up some bacteria from where it popped through me the first time. What the hell this is starting out no fun. The vampire comes back sticks me on the right inner wrist with a butterfly needle, and that hurts. He ½ fills 2 more A1 Steak Sauce bottles and leaves. These 2 people are not getting Christmas cards. OK now it is time to run to chest x-ray and heck I got to pee. So here I am dangerous to myself. I have to wear a mask when they wheel me through the hallways. Nice. So no big story here go get a chest x-ray then back to my solitary pleasure chamber. At this point it is Mo who drove me here, damn it is a lot of work living with me. And my father. I finally get my orders to be admitted. Now I get driven to Franklin 4, with my mask on and all. The whole time I am praying for a room by myself, after all I am Bob-in-a-bubble, I can’t have another Michael/ roommate. So I get down this hall and yes I get a room with a view, a couch 2 chairs, TV, my own bathroom. This room is a 1200 a month studio apartment in Manhattan probably. So they throw me on the other bed. My day nurse Barbara comes in and asks me 20 questions and what they do is write all the answers right on a paper towel, pretty hip. I guess they run that through a high tech scanner and all the data goes in the computer. So the plan is to hook me up to 2 different types of anti-biotics through my IV like 3 or 4 times a day to help protect me from the world. I got 2 platelet transfusions with no reactions so that was good. Now it is like 12:30 / 1pm, I haven’t eaten yet. Man I am hungry and grumpy. (OK for the record just keep the grumpy theme from this Saturday straight through my release on Saturday the 29th). I finally get something to chew on for lunch around 2 something. Dinner comes around 5:30 on the floor. I have been clicking through my TV channels all like 30 something of them over and over and over. For anyone who hasn’t been in the hospital let me explain the remote. It has one button on it that says TV. You push this to go through the channels, you can only go up, if you pass what you want to see, you have to go all the way back through all the channels again. Yes it is 2003. Mo left in the afternoon and my father stayed most of the day. So that was most of the fun for my first day. I brought my new book, but in a hospital when you feel icky, and all the lights are examination florescent white, it doesn’t make for a great reading condition to focus in. So with all this great free time, reading was not going to get done. Each day had it’s schedule. Up between 6-7 am, Doctors rounds in the 7am hour, breakfast would then come around 8:30, also around this time they would come for my daily blood work. They would stick me in the elbow for blood work, I also got stuck in the back of each arm everyday with another 2 shots. I got pricked about 3 or 4 times a day. As far as weekday TV: 9am Jenny Jones, 10am Maury 11am Jerry Springer 12pm Maury 1pm Jerry Springer. Hey you try to be off work and only have the tv and beat this schedule. You will not. The only gimmick at least one hour a day was always war pre-empted. This is channel 11 dammit, go to CBS for that stuff. I could really bore you with the everyday detail here. I did manage to add to my own room booty a refrigerator. There were some very nice nurses. I did find that the anti-biotics I was on ended up wreaking havoc on my stomach. I started getting chemo-type nausea again and that was awful. I missed several meals because of that, and ate very little portions at others. I had a bad headache coming on. (I also went through ear infections sore throats, brought on by swollen lymph nodes etc). They decided to let me try perkaset. Now I took these back in 99 around my first surgery, and thought oh yeah they helped me then. So then that night the nurse goes you want 2. I said well I am feeling a bit crappy, and they will help me sleep sure. So I take them, on an empty stomach (a no-no) because the nausea I hadn’t eaten much dinner. I am almost immediately nodding out. This is like 8:30pm. Then I get woken up for vital signs. The nurse told me to breathe deep because my blood pressure was low due to the medicine. Then I get awoken for one antibiotic to be replaced. That goes for like 40 minutes then is done and the machine beeps and wakes me. Then I get woken up again to start the second one. Oh yeah they also took blood from me twice this night to check a level of a drug in my system. Do you get the fact that they wake you up all night in a hospital. Now when I was asleep all was cool. But about the time I was woken up around 10:30 I was peaking on the drugs. I could feel my blood pressure was low. I thought I had to catch my breath at one point. Man I was going crazy I was totally stoned. No self control, and way to paranoid to go to sleep. So I page the nurse. Look I am totally stoned and can’t handle it. Yes I can make nurses laugh. One nurse at the station said to my nurse go down there and tell him to enjoy it. Well time + drugs = sober and nothing else. So I ate a jello and watched an hour of TV and was down by then and went to bed at midnight. Again the week was That is one of my funnier stories I have out of this, I am telling you it was a boring week. Once my white blood count turned around they tend to shoot right up and mine did. A side note when your white blood cells are coming out of your bone marrow, you feel sharp stabbing pains in your joints. Lot’s of aches and pains, nausea, crankiness, hospital food and popping any pills I could get my hands on. and on that note. I have taken my chemo and am going to watch third watch (I got into that show at the hospital last year, and I don't always catch it.... pass the perkiset.) 11:08 PM Thursday, March 18, 2004   Bob Dylan Union Showdown From the Infidels Album Well, my shoes, they come from Singapore, My flashlight's from Taiwan, My tablecloth's from Malaysia, My belt buckle's from the Amazon. You know, this shirt I wear comes from the Philippines And the car I drive is a Chevrolet, It was put together down in Argentina By a guy makin' thirty cents a day. Well, it's sundown on the union And what's made in the U.S.A. Sure was a good idea 'Til greed got in the way. Well, this silk dress is from Hong Kong And the pearls are from Japan. Well, the dog collar's from India And the flower pot's from Pakistan. All the furniture, it says "Made in Brazil" Where a woman, she slaved for sure Bringin' home thirty cents a day to a family of twelve, You know, that's a lot of money to her. Well, it's sundown on the union And what's made in the U.S.A. Sure was a good idea 'Til greed got in the way. Well, you know, lots of people complainin' that there is no work. I say, "Why you say that for When nothin' you got is U.S.-made?" They don't make nothin' here no more, You know, capitalism is above the law. It say, "It don't count 'less it sells." When it costs too much to build it at home You just build it cheaper someplace else. Well, it's sundown on the union And what's made in the U.S.A. Sure was a good idea 'Til greed got in the way. Well, the job that you used to have, They gave it to somebody down in El Salvador. The unions are big business, friend, And they're goin' out like a dinosaur. They used to grow food in Kansas Now they want to grow it on the moon and eat it raw. I can see the day coming when even your home garden Is gonna be against the law. Well, it's sundown on the union And what's made in the U.S.A. Sure was a good idea 'Til greed got in the way. Democracy don't rule the world, You'd better get that in your head. This world is ruled by violence But I guess that's better left unsaid. From Broadway to the Milky Way, That's a lot of territory indeed And a man's gonna do what he has to do When he's got a hungry mouth to feed. Well, it's sundown on the union And what's made in the U.S.A. Sure was a good idea 'Til greed got in the way. OK we just want to start with an apology for not updating this service more frequently. You see there was a mix-up at corporate, let us assure you this was a first. You see do to budget cuts and trying to stay in line with our shareholders wish?s, the creative department was laid off. That wasn?t the problem. You see the updating responsibility was going to be the responsibility of the marketing / packaging / reception department. The big hitch was the fact that that department was laid off 6 months ago with it?s responsibilities being shipped over seas. It seems that the accounting / sales / janitorial staff was not informed. So now things are under control. Updates will now be made over seas by our newly established department: marketing / packaging / reception / creative / accounting / sales / janitorial department. We hope this communication problem never arises again, and it shouldn?t since the new marketing / packaging / reception / creative / accounting / sales / janitorial department is all being handled by one person which we are paying pennies on the dollar versus the 100 + American employee?s that used to handle that. We have now put all our American workers on the street selling sunglasses in the summer and gloves in the winter in Times Square and have managed to close all our American offices ? thus cutting more overhead. You see we are doing right by our stockholders after all! Enjoy the updates. So here we go with our new update: Just the facts: Current Seizure activity ? come on let?s get the juice out of the way first: Tuesday March 11, 2004 Facial seizure made up of a bunch of ticks. A lot of blinking. It lasted about 40 seconds maybe. Some additional facial to much ticking It happened at about 7:45 pm. Wednesday March 11, 2004 Facial seizure probably only 30 seconds. Facial only, it happened at about 8:15 pm. Thursday March 18, 2004 Facial seizure small eye ticks first, then stronger facial only ticks. It started for like 5 seconds, then stopped then the stronger ticks for like another 10 seconds then it was done. Kind of sick but I have all this stuff documented, makes it easy when I see my doctor I just bring a print out, and it goes into my chart ? some of you people got morbid hobbies also! At least I admit to mine. Nothing much new exciting here, my blood numbers are still low so I haven?t started my second round of maintenance chemo yet. I get a blood check again next Wednesday in Morristown. Next month I have several appointments in New York In fact 3 Thursday?s in a row I have an MRI, the next week I have another appointment with a new doctor, then an appointment with my other doctor. OK let me explain I haven?t been crazy about my neuro-oncologist that replaced the one that moved out of state. So I have to transfer my records and prints over so I can go see a new one over at Sloan Kettering. I will see what this new doctor is like. My current one is not bad, I just always feel like every time I go, he is just giving me standard answers, and general information. I generally know the standard junk about my head case. I guess the uncertainty stinks. I can wrap up the message from all doctors: don?t get sick and we won?t have to treat you, so don?t worry about it, we will cross that bridge when and if it comes. Smack on the ass, goodbye. Let?s review this, don?t get sick ? well duh if I wasn?t sick in some sort of way, we wouldn?t be such good friends in the first place. I didn?t worry about it, and it recurred so now I worry about it. They say if you make 5 years, that is the number to reach with cancer, if you are 5 years cancer free your survival chances are better. So the first 5 years sucks and are filled with paranoia. You see after the first time, I didn?t worry about it. When I got re-diagnosed, the doctor said, well you had 3 good years (meaning between tumors), wrong answer doc! Three good years?. And this is the doctor I miss!!! Well I got one year down healthy! Another part of the theory is every day you stay healthy is another day of options you can have for treatment, but if you go and die, they can?t help you. Forget all those self help and homeo-pathic stuff ? these are life?s little answers. And every doctor has a different opinion, and won?t give you a direct answer for fear of being liable, if you tell me I will live 10 years and die in 9, there will be a lawyer that will sue for me from the grave for a year of my life!!! So doctor?s can?t really tell you jack. Don?t die, don?t get sick, and you will be healthy. Now that will be $125 for each and every one of you, and I am out of network, so this is coming out of your pocket. Well enough about all that. Stay tuned for more of my how to make money from insurance and phone companies tips to come. Hey without a day job I need to cut my costs down. Lower overhead is good!! Stock holders love that. So, I did manage to see Mel Gibson?s new movie. Let me warn you if you are a sinner like me and don?t know the story line, you won?t get all the details. So now I am reading the New Testament to put the whole thing together. Now before you get all nuts and think that Mel Gibson turned me onto God, let me explain. I read a lot anyway, and why haven?t I read the most read book of all time? Makes no sense, so I am now learning the story line and the movie makes more sense now. Heavy stuff, no I obviously wasn?t raised catholic. So the lesson here is read the book first! I send you as sheep out to the wolves. Come on every one quotes the big book! More to come 6:45 PM Saturday, February 28, 2004   Bob Dylan Shooting Star From: Oh Mercy Seen a shooting star tonight And I thought of you. You were trying to break into another world A world I never knew. I always kind of wondered If you ever made it through. Seen a shooting star tonight And I thought of you. Seen a shooting star tonight And I thought of me. If I was still the same If I ever became what you wanted me to be Did I miss the mark or Over-step the line That only you could see? Seen a shooting star tonight And I thought of me. Listen to the engine, listen to the bell As the last fire truck from hell Goes rolling by, all good people are praying, It's the last temptation The last account The last time you might hear the sermon on the mount, The last radio is playing. Seen a shooting star tonight Slip Away. Tomorrow will be another day. Guess it's too late to say the things to you That you needed to hear me say. Seen a shooting star tonight Slip away. So we can re set the calendar. Who am I kidding throw them out. The good news is, if I keep this up the roads will always be safe. I got woken up Friday morning by a facial seizure. I knew it was coming all the random ticks. The relief after one is knowing that I have never had 2 in one day. And the ticks seem to subside for a while. Almost like it builds up, happens and then it is done for a while. I keep a record of them, that way when I go see my doctor I just hand it to him to update him with the exact gory details. I don?t know, maybe living on the mountain in isolation is getting to me. I am not getting any younger all that crap. But I haven?t been driving, working, getting around. Hey I just gave my last holiday present yesterday. It?s been months since I saw this guy so I was able to give them their gift. I guess being 30 which I guess is supposed to be a productive time, to feel like you are in a freeze frame is frustrating. I have been trying to fight this mind set I have been trying to think more positive and try to focus on figuring out a future, but I guess I have stumbled a bit. I guess I hate set-backs. OK we all do, some of us make our own set-backs. I have just had no control for like 15 months. I mean back in 12/02 when I had a seizure at work, afterwards I was laying on the ground, and all I could think about, the thing that upset me most was that I wouldn?t be able to drive. By having the seizure it screwed everything up. My situation was out of my control again. It had come back to own me. Yeah I know I am only owned by it if I let myself be. I was supposed to restart my maintenance chemo again tonight, but this past Wednesday when I went to get my blood check up, my platlets were low again. So my doctor put off me restarting the chemo again to see where my levels were going. So I am going back next Wednesday to get checked again to see if I am going back up, or if we have to check again the following week. Let me tell you it takes nothing to get used to only seeing a doctor once a month. I mean don?t get me wrong I have 3 different doctors so I still see someone at least every other week, but when you have to go back on once a week appointments, it is frustrating. I mean it still beats 3 times a week. But that is the crappy part of this stuff, all your life you get a cold you break a bone, you get better and you are done with it. This thing doesn?t let go. In a sense it does own my body. 6:24 PM Saturday, February 14, 2004   To all you people celebrating Valentines day. Keep your bragging to yourself. Oh and St. Hallmark says thanks for buying into the whole scam. If you need something gushy at least make it a cool tune: Alice Cooper Be With You Awhile From - The Eyes Of Alice Cooper I wish I could tell you something you didn't know I wish I could give you something you didn't owe I wish I could tell you a joke to make you smile And I could be with you awhile Just wanna be that someone you weren't looking for Some nameless fascination that showed up at your door And when you're sad and blue my jokes still make you smile And I could be with you awhile I just want to take you somewhere you haven't been Find an old time movie where we don't know the end Lost in the radio, drive another mile So I could be with you awhile Just wanna be that someone you weren't looking for Some nameless fascination that showed up at your door And when you're sad and blue my jokes still make you smile And I could be with you awhile Tired of serious conversation Tangled up in situations I feel so free 'cause you want nothing from me Just wanna be that someone you weren't looking for Some hopeless vagabond asleep there on your floor And when you're old and gray my jokes still make you smile And I could be with you awhile Just wanna be that someone you weren't looking for Some nameless fascination that showed up at your door And when you're old and gray my jokes still make you smile And I could be with you awhile I just want to be with you awhile I just want to be with you awhile I just want to be with you... So here I am 45 days clean with no “events”, I finished my first 6 week chemo maintenance regimen, I get 2 weeks off for good behavior now. I went to the doctor this past Thursday my last MRI was clean, nothing growing up there in my head. It pays to have that hole in my head stay just the way it is, empty. My doctor said that 5 years is the big mark, if you make it 5 years clean without a re-occurrence you should be good. Well I got one of them years down I guess. I still haven’t gotten that warm confident feeling from this doctor so now I have to try to hunt down another doctor. I probably have to look into another facility. But meanwhile my other doctor is in the same office as this doctor, so if and when I dump him I will still see him sometimes. Is that like running into an ex? Well I don’t know him that long, so if it is, it can’t be one that I have too much history with. If I make 6 months without an event they let me drive. I don’t miss car payments or insurance at all. I hate not having my freedom (I know you have all read that already). I don’t even concentrate on having 1 and ½ months down, I still have facial ticks which usually precede getting a random event. And the minute one does happen we re set the clock, so when and if I ever get 6 months clear I will worry about it then. For now it is something that is hard to see coming, so I keep it out of my mind, in fact I tuck it in that little hole in my head. There is not much else to report. I don’t have to go to the doctors as often any more, so that is a relief, especially to the people that had to drive me around. I was always independent and I would just assume go without before I ask people for help. But if asking people for help is the only way I can accomplish what I have to then so be it. It has been a humbling year. Well if I pull a favor or a ride off people once a month I can just chalk it up to the fact it is an excuse to see each other as friends. Think about how many weeks and months we let go by because we get so self-caught up that we don’t see the people that really matter to us. Phone calls / emails are cool too, but hell waste a Saturday and spend it with someone. 7:26 PM Sunday, February 01, 2004   2/1/04 Ani Difranco First CD: the slant the slant a building settling around me my figure female framed crookedly in the threshold of the room door scraping floorboards with every opening carving a rough history of bedroom scenes the plot hard to follow the text obscured in the folds of sheets slowly gathering the stains of seasons spent lying there red and brown like leaves fallen the colors of an eternal cycle fading with the wash cycle and the rinse cycle again an unfamiliar smell like my name misspelled or misspoken a cycle broken the sound of them strong stalking talking about their prey like the way hammer meets nail pounding, they say pounding out the rhythms of attraction like a woman was a drum like a body was a weapon like there was something more they wanted than the journey like it was owed to them steel toed they walk and i'm wondering why this fear of men maybe it's because i'm hungry and like a baby i'm dependent on them to feed me i am a work in progress dressed in the fabric of a world unfolding offering me intricate patterns of questions rhythms that never come clean and strengths that you still haven't seen OK no I am not trying to estrogen this page up. Sometimes you gotta appreciate writing. And besides I don’t need to explain it all…. So I have been slacking off and haven’t written in awhile. New stuff? Ok we can say I am one month “event” free. But every time I try to get out “they pull me back in” (had to quote the godfather). So everytime I seem to get cocky about things BANG I get another. But I have increased my med’s again in mid-January so, so far the cocktail of drugs seem to be holding off the storm. I have had a good amount of “ticks” usually they indicate I have something coming up. So if I think one is coming yeah, I am not out of this thing. The non-driving thing is real old in the winter. Cabin fever like I have a rash sometimes it seems. So the lack of entries I guess comes from mostly lack of information. I had a clear MRI a couple weeks ago, so that is positive. It took like 2 weeks to get the news about that. I have to figure out how to dump this doctor, and get a new one. I have an appointment with him one more time on the 12th. It might just be my last one. All my last appointments it was like I couldn’t get any answers I needed or wanted. So a couple of weeks ago I brought a transfer of records request to my old doctors old office to get the records brought over. Now he has no excuse my records will all be in my folder. So I will see. The doctor thing is really more glamorous than it seems. I picked a weird hobby going to see doctors so much. I should have stuck to motorcycles. Sometimes I feel like I am haunted by ghosts of my life. And I mean that figuratively not literally, well hopefully at least. I mean the past year has given me a lot of reflection time. I grew up 30 miles east of here. A lot of times when I am out and I drive by an area where something happened it makes me think of those times and places. Some of this is compounded I guess by the whole sickness and life reflecting thing I guess. Also I haven’t really had a social life in a year. So I have a lot of reflecting time. It seems that life gets so different when you let it. I mean you can’t like all the new music forever. So what happens? You become musically old. I mean the older I get the older my music tastes get it seems. You don’t really move forward with the times. I mean it is all about what you do for yourself. So I try to keep myself busy, and I am trying to guide this year into getting back to a life. 6:57 PM