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   Friday, October 31, 2003   Sometimes I feel so happy Sometimes I feel so sad Sometimes I feel so happy But mostly you just make me mad Baby, you just make me mad Linger on your pale blue eyes Linger on your pale blue eyes Thought of you as my mountain top Thought of you as my peak I thought of you as everything I’ve had, but couldn’t keep I’ve had, but couldn’t keep Linger on your pale blue eyes Linger on your pale blue eyes 9:35 PM   Halloween. Well it’s been a weird day!! A guy called from Staten Island to check out my car today. For those who don’t remember because of the seizures I haven’t been able to drive all year. So I have been making car payments and paying insurance on my car all year. And he bought the damn thing!! Go figure. I gotta get the title from Ford now, and then the car is his. I am gonna miss that car. Even though I can’t drive it, I love the car, and just having it there meant at least I still had a car. Now watch I won’t have any more seizures now that I sold the car, fat chance. I got a call from my new Neuro-Oncologist, he had the results of my new MRI I went for yesterday. From what he is said in comparison to my last MRI (August 26, 2003) this new MRI is even better than the last one. The hole in my head is closing up which suggests no tumor activity in there. On the scans they don’t see any tumor residue either, but there is nothing that can tell them anything on a molecule level. But these MRI’s are the best way they have of looking in there. So there maybe it took me 2 times but I might have got this thing kicked. If I could just kick this little seizure hobby, I would be happier. You can’t have everything. Don’t you know that by now. 7:57 PM Wednesday, October 29, 2003   Some anniversaries I forgot to mention this month. October 11th 1999 was when I was diagnosed with the brain tumor 4 years ago. I made 3 years clean then re-diagnosed last November. October 18th 1999 – first brain surgery October 25th 1999 was when they pulled the junk out of me in my second brain surgery. October 27th 1999 the Yankees won the world series, but if you know me I didn’t care then or now, but my surgeon came in to tell me the first biopsies said that the tumor was non-cancer, I said I could kiss him, he told me I could hug him some other time! October 29th 1999 Friday they kicked me the hell out of the hospital after a 2 and a ½ week trip. Just some history to the brain blog. Did I celebrate this stuff this month? Not at all, why celebrate it when it came back, I am just thinking of this now. 8:27 PM   So here I am doing a recap. I am going to take you back 4 years from now to when I found out that I had a brain tumor to begin with. So if you haven’t heard this here it is. If you lived through this with me, maybe you forgot some of this. Read it again. I typed it you read it!!! So life starts to change when we hear my company is being sold. But for the day to day activity is still the same, until someone officially tells us what is going on. They had gotten some vouchers for us to get some computer training. When you can get a day out of the office and they are letting you learn something, go for it. So that morning I trek into the city. The training center was in this building on 34th street right over Madison Square Garden killer view of the city from like 23 floors in the air. The class I took was with several other people from my office. It was an intro class to Excel. The class takes all day. We got through the whole morning some of it pretty mundane, but a few new tricks. We broke for lunch and went to Wendy’s, a normal day by anyone’s standards. On the way back from lunch, one of the guys said he wanted to go to the bathroom. I think I went before lunch so I was OK, but went for the walk anyway. So the bathroom was on the right side of the bathroom I had been to it earlier. All of the sudden my head pinned left, I was like what the hell? I heard the guy with me say, “Hey Bob here it is you passed it.” So I headed for his voice I said, “Doug I need your help.” “Bob what’s wrong?” At this point I couldn’t talk I think I got out, “Sei Sei Sei…” As if I was trying to say seizure. Then As I fell everything went black. From what I was told Doug caught me so I didn’t fall, and I think my other co-worker Jeff was bugging out. Doug told Jeff to go call 911. So Jeff who probably wanted to pass out himself ran into the hall and yelled for someone to call 911. Remember this wasn’t our office and here is this stranger running out of the men’s room yelling call 911. Now the only thing that ever happened to me like this was the day before when I was having a conversation and while I was talking my head turned left. It was weird because I was having a conversation and without my control my head just tanked slowly all the way left. I never lost my train of thought but when it was done. I was like what the hell was that. I didn’t turn my head left myself. I drove home that night that was the scarier part in looking back. So the next thing I remember was waking up and having a lot of people there with me in the men’s room. There was Doug, Jeff, the owner of our company’s assistant, who was a woman, in the men’s room, who let her in here!! And there was 2 medics asking me questions. I knew the answers and then they were like well we have to take you in. I was like wait a minute I am not going anywhere. I have to go back to my Excel class and we have to go back to work later….. They said, no you are coming with us. But just know I went out kicking and complaining. So we are on 34th street and instead of going to NYU on 34th and first they take me to St. Claires on 50th. First bad move right there by the medics, but we won’t get into that yet. They take me in and ask me a bunch of questions, all routine, take me in for a Cat Scan, the whole time Doug who came with me is waiting in the waiting room. Now you know unless you show up with a major gun wound you wait in an Emergency Room, so eventually I get taken to a Cat Scan to peek under the hood. Then they brought me back to the E.R. The woman on one side of me (behind the proverbial curtain) is a pregnant junky. On the other side of me (behind another curtain) is a man sick with aids, he is getting quizzed if he has been careful and told all his sexual partners. I am having a good time, by now my parents have shown up. They come in and ask me what’s going on, I told them of course I don’t know. Then a doctor shows up and tells them he has to talk to me in private. So he throws them out of my curtained room. And I remember he leaned over me as I laid on the gurney, and said, “You have a brain tumor.” So right there I don’t know what the hell he is talking about and I am about to punch out world. I figure it’s a wrap, I am done, what do I know? So they tell me I am staying for the night. Great! They also tell me they don’t have a department to treat me there but they will send a neurologist to see me the next day anyway. And I am being made to stay here, why? So this is my October 11th, 1999 what were you doing on that day? Nobody else probably remembers that day at all! Side note Doug was sitting in the waiting room right next to my parents and they didn’t realize they were both out there for me. I think there was a really smelly homeless guy the hospital kept out there that everyone was pre-occupied with supposedly. The next day I am just hanging around. Some budget neurologist comes to see me. He sends me for an EEG. To check what’s doing up there. But again there is no department to treat me there. So I get a call about a doctor at NYU to check with. He came under recommendation of a person who went through this and researched doctors. So I called him left and left a message. Around 7pm I got a call back. He said I needed to get out of St. Clairs (By now even I knew this). But said either get to Columbia or NYU. I was impressed that he didn’t just say I had to come to him. I said can you put in a transfer for me to NYU. He said if that’s what I wanted he would put in the order in the morning. So first thing the next morning I had to sign off on my transfer, and wait for an ambulance to drive me across town. I did get one more visit from the budget-neuro doctor. He came in and said, “So you’re getting transferred?” I said, “Yes I can’t get treatment here so I am going to NYU.” So he replied, “Well good luck.” And left, they tried billing me like $350 for that (which they did send to my insurance company after they shook me down for it) So that afternoon I got another ride in an ambulance to NYU, and I started getting some results and answers about this crap dammit!!! And my accommodations kicked ass, a solo room, overlooking the river nice digs!! There were a couple calls made I heard to push me into such digs. But the people were great there. All the nurses were really nice. I had a camera mounted on the ceiling watching me and taping me 24 hours a day. I had a private bathroom and shower, which I quickly demanded to be able to use. It had been 2 days! So there I am and now if I can even remember it, they start parading doctors in to see me. My dad was there like 16 hours a day. Some people came down from the job. My old companies original owner had announced when I went into the hospital, that he sold the company, but the gossip that went on during that was, did you hear Bob is in the hospital (There I was stealing the mans thunder on his day). He finally climbed high enough in his years of hard work to reap the rewards and I try to steal his thunder! So they tell me after an MRI and some other tests that we are going in for some standard brain surgery for my tumor. Wait a minute standard surgery for a brain tumor, can I get a week to think about it (NO). They tell me I have to have a 2 step process. The first surgery, they open me up and put in a grid with wires that come out of my head. They use this to map my brain for the second surgery. They map my brain with little bolts of electric to my brain, but more on that later. So meanwhile during this time a piece of my skull stays out of my body on in a freezer somewhere in the hospital. But again even with all this crazy planning, all the doctors and nurses are great. To be continued… 8:21 PM Thursday, October 23, 2003   Any new occurrences? Not really. Nothing really happening. I had a 2 week reprise from doctors which was nice. I went yesterday and had my blood checked again. My platlets are a little low. Nothing dangerous, they are still riding the rollercoaster up and down I guess. I have another appointment next week in the city on Thursday the 30th. I have to meet my new neuro-oncologist, and get a new MRI. I am thrilled 45 minutes in the tube with an injection. Just once let me get away with going to the doctors without something going into my veins!!! I mean these people aren’t talking to me for my personality but rather for my mental defects. So we will see soon I guess what this new scan shows. So I have to go back to my local Morristown doctor in 2 weeks by then he should have a report on my scans. 2:46 PM Sunday, October 19, 2003   It’s weird the way you start to think when you don’t have complete control over your body. In this I mean the seizures that I still seem to have that strike randomly. Whenever I am out it is a huge stress for me. I look around a room and always think, “OK, where would I run to hide it out if it strikes. I think of everywhere I go like that. If I take the bicycle around the corner I think about hitting the dirt. At a wedding I attended the other week, I thought the table clothes make under the table the perfect place. I search out nooks where I can go and hide out the storm. I try not to think about it at all but the anxiety is always within arm reach. Thinking about the actual experience of it is the worst. There is no explaining the feeling unless you have ever had no control of yourself. But even then, you lose feeling in parts of your body, so you don’t even feel everything happening. Afterwards is the craziest, not feeling your whole left side speech slurred, not being able to move to get up or roll over. Imagine your body being a skipping record, and you know how annoying that is, ok maybe some of you only know how annoying a skipping CD is. Then imagine you can’t get it to stop. During the whole thing sometimes I feel a pulling backwards, I don’t know if that is a twitching thing or a mild in and out of consciousness. Because sometimes when I am falling asleep I feel the same type of slipping away. I have a reaction to anesthesia the same way. After surgery for a week or two it is hard for me to fall asleep. I keep thinking that I am falling under. For anyone that’s ever been put under it is weird because you are passing out not under your control. So falling asleep is the same way. I would imagine if you die peacefully it’s gotta feel the same way. So I guess my mind gets messed up from that (hey my mind is messed up enough already). So it takes like a couple weeks of falling asleep for it to go away. It’s almost funny I am just about to fall asleep and I jump up, like I am fighting sleep. But my mind is just fighting slipping away. I guess I really do have some fight to live instinct or something. But enough fun stuff for now we could get back to that fun stuff later. DJing is weird. I have done a ton of private parties. There are certain families I have seen several times in a year. They have parties for everything. Then you have families like mine, you are lucky if there is a wedding, but don’t worry we will get you on the other side at the funeral. Heck I am a rotten uncle that misses most birthday parties for my nieces. For that 4 hours you are playing music you have to be up, the encouraging life of the party. Dealer with drunks that like music, people who think their music is the best, no I won’t play light my fire at a wedding. It’s the type of situation where for me, before and after it’s like having mood swings just to get the energy up. So before a gig and after grumpy is around, think about it I have to hide grumpy for those whole 4 hours. I think this especially happens when I am doing gigs by myself and I don’t have someone else to bounce energy off of. Everyone thinks it’s such a great gig. Well you have to enjoy it on some level. For me number 1, it pays great for the time you put in you do great. I think I finally figured the whole thing out when playing to a crowd that loved cheesy disco one night, Djing, it’s not the job that sucks, but the music. You will have crowds that want to stay on one genre all night and that sucks, you run out of killer songs from that time after awhile. But after X number of jobs am I psyched about it, nah. I mean fun for me is something at least different. A biker event when you can blast out any rock you want is cool. 8:55 PM   Your prison is walking through this world all alone 11:57 AM Saturday, October 11, 2003   Where did it all go wrong? You get old. You start looking back at everything in your life. Everything in your life gets a glossy coat. Even if someone shits on you, your mind can rewrite history and you can think of that person. You wonder where they are what they are doing. Sometimes I think like when I think of a person and place. Maybe they are there, like some freaky psychic connection and they are opening the memory by being in that location. Or maybe they are thinking of you also, and that is how the mind works it brings up a positive thought. But how does this theory work if that person that is thinking of you is thinking bad thoughts, like how much of an asshole you were. Convoluted theories that mean nothing or anything you want to believe. Life’s like that I guess good for what you want it to be. Hey remember what Bret Michaels said “Give me something to believe in” (Him and Bon Jovi are the great philosophers of our time!) Too much time breeds too much thinking also. So where did it go wrong. The common answer is the childhood trip. Was I the weird one growing up? Were you? I mean I did grow my hair long. I did buy a motorcycle, but those were days that I stayed busy enough so dust didn’t settle on me. You didn’t look back, you just moved forward, the good old days. I guess if you think you had a good little run it’s better than no run at all. The rest of your life you live vicariously through your little run. If you know what I am talking about then you are old too. But a sign of getting old is that you have slowed down enough to reflect on the past because your current life is empty. You have somehow slowed down, or lacking something, or your mind is just telling you that a part of your life was better. Remember your mind gloss’s over things. Think of a bad illness you had. You really don’t think of these. Pain is temporary, unless you are in it right now, then it is all encompassing. But once it’s gone its gone, your mind gets rid of the bad stuff. Convenient how that happens, must be a protection device, so why does the mind allow bad people in your life? “God” gave man free will, and that allows us to make every mistake ourselves. Even if you outlined in a book every teenage mistake and it’s consequences, teens would still have to roll the dice on at least ½ the risks to gamble the consequences themselves. That’s just the way it is. What do you get out of it. Hopefully you have bonded some friendships so you can commiserate about your good runs together. I have bonded a lot closer with a small group of friends even more in the past year. It makes it better and harder. They stick with you like bbq sauce on ribs to help you hang in there. But when you want to punch out you realize you can’t hurt them. It’s a double edged sword. When the cards are down and the pain is an 11 it is easier to punch out all the pain is gone. It’s amazing what doctors have to go through sometimes to save people. And what happens if you are left a vegetable, you were saved for a machine to keep you in limbo. There are some ways to live that aren’t worth living. I still contend if you have your health that is the 1st right of passage in this life. If you have something health wise holding you back, everything is that much harder. We bitch and moan about so much but if you are able to bitch and moan you are still breathing do it and get it over with. One thing we can’t buy back with all the money in the bank is time, wasting it sucks. Regrets are a horrible curse, if you don’t do or try something you can never go back to that time, you can’t change what you do. Sometimes you can’t change what you say or do here or now, and you can never come back to now to fix that. Maybe I am the only one not having fun anymore – not bitter! Life’s like mayonnaise soda. Life’s like bacon and ice cream That’s what life’s like without you. Life’s forever dealing in hurt Now life’s like death without living that’s what life’s like without you So, so here we are again in the attic of trash seeing what rattles. It’s easy enough to say what’s wrong, that’s not what I want to hear all night long. I want to walk baby not be carried out I don’t want to give it up I’m not meant to be married I am no dog you tie up and put in a parked car 6:05 PM Thursday, October 09, 2003   So I went to the doctors today and guess what my numbers were all pretty solid. How about this, he told me to skip my next appointment and come back in not one but 2 weeks. How crazy is this. This is the first time I am going 2 weeks with out a doctors appointment in like 8 months or so. I used to see people that were coming in for their monthly blood check ups and be envious. I might just become one of those people one day. I was up to 4 days in one week on the worst weeks. And now I am aiming at 3 times in one month big change. I guess that has to be positive. 9:12 AM Tuesday, October 07, 2003   So where are we at? Well the blood is doing ok. The platlets are a little low but whites are up, and I will forgo juggling knives any day if I can eat whatever I want, and not have to worry about germs. I got over the shop rite “event”, went to see Billy Hector. Unbelievable. The guy is a vampire that doesn’t age, but his talent is like wine and always gets better. Never pass up Billy Hector. I got to talk with him for a minute after the gig. I was trying on each break, but the guy gets busy with fans, and dammit the women love Billy. No guy has a chance when Billy plays, it’s Billy’s house! So at the end I got to grab him for a minute. I said, “Hey Billy, my girlfriend called you earlier in the year about me, I went in for some surgery for a brain tumor and all yadda yadda, he looks at me oh yeah… hey there is another friend of mine here going in for brain surgery, do you have any words of wisdom. I said well the first time I did it, my friend wrote to me fuck that tumor and that helped keep me on track. So of all the random nights, I finally get to see Billy with some of my friends that picked me up, and there at the club is a woman going through the same surgery, non-cancerous. How weird. I have been trying to see him all year and on that night there is another head case. Well she goes this month and I know she will kick ass. Fastforward to last Thursday I went into NYC for an EEG and a doctors appointment. I met a new Neuro-Oncologist I think I am going to use that works with my current doctor and is seeing a lot of patients from my doctor who moved away. I told them about my shop rite seizure. I got a once over they talked about uping my medications and I discussed staying out on disability because I really don’t feel up to the work thing right now and they agreed. So then I got to go to work with some friends from my old job. This guy Tim had organized it and got Rocker Diva Lisa and Party Diva Molly to attend also (3 of the many laid off musketeers). It was a very cool lunch and great to see everyone and not at the office but in a social setting. Big props to Tim the social coordinator of all things lunch! Seeing close friends from work make you realize the things you liked about your workplace, and not seeing those people anymore stinks. Fast forward to Friday. We went to Brooklyn for some parties we had to attend. We pack up the dog, abandon the cats, iguana, and fish and go! Friday’s excitement. Well we got to Brooklyn settled in and wouldn’t you know it BANG. I get another big one. I go into the living room, I lay down on the carpet. Twitch, twitch twitch. I am face down, and I can feel my face just rubbing away at the new carpet. My arm starts to go a bit. Twitch, Bang, Bang and the hits keep coming. This is turning into a bad day. Bang Bang Bang Bang Bang Bang, Release, twitch, pull, twitch. DONE. I have no feeling on my left arm or I don’t think below the waste. The insult to injury is my right side of my face on my cheek bone I have a rug burn from my face rubbing on the carpet. So Mo who is sitting with me through the whole fish out of water experience drags me over to the couch. I see my left arm plop down but it might as well be someone else’s arm because I don’t feel it. Man I hate these things. Why they gotta mess with me. Reset the Bob’s never gonna drive clock. I have never had more than one in a day. So one relief I get is if I have one I am set for the day! Hey you have to grab onto the little things to relieve you. Fast forward to Saturday, we are traveling to a 1 year old birthday party. I am a bit wound out in the morning. I am hoping nothing will happen, and at the same time I was kind of thinking I hope something happens before I get there so I can get it over with for the day. Talk about talking yourself into it. So of course Bang. Twitch, Twitch Twitch The face starts going right there in the car. This one is short though maybe a minute of really just face twitches. So there it is. Over for the day, I paid my dues. Now my most recent theory is the fact that I spread my med’s out. Instead of taking them 3 at a time. I take one an hour for 3 hours. Then repeat in the afternoon and night. I haven’t had one since Saturday and haven’t heard back from the doctor yet. I go in tomorrow for a blood check, and I will check my drug levels also. Anything else new … not really just trying to stay sedated and on the level. I am questioning being in public at all especially alone, I live a big what if “it” happens. It stinks and who needs it. 4:05 PM