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, February 25, 2005   2/25/05 OK for real data I am penciled in for the 7th pre-testing and the 10th for surgery. The meeting still didn’t happen because some of the attending doctor’s were away on vacation. So they have no answer’s for me yet but we did put in some dates in pencil for me. Here’ are some ramblings from when I couldn’t sleep last night some funny some reflective and some notes at the bottom, ie if you don’t want this psycho babble check the bottom of this entry at least. I lay here and review my life in slow motion, times, people, places, events, ages. It’s like they sway your whole life before your eyes but it’s like it’s in slow motion not a flash. Here was your life time’s places people maybe it’s the significant things and people that made me who I am which makes some sense it runs the gambit of emotions of things that made me glad, sad, angry the works yes you people that hurt me are there. I do this for an hour or 2 a night just waiting for sleep my only true peace right now. It’s weird and I feel bitter about a lot of things that went wrong which makes no sense being that I have such a special people in my life helping me through the current drama. I feel doing this reflection time I really don’t have a reason to be lonely other than my isolation from people all day and I used to be such a social person. I wish I could trade these 2 cats for one good dog. I really do. I think that would help. But taking care of myself is enough of a challenge right now a dog would be more work and physical strain but better company. I really don’t know why, all this loneliness I just seems like our whole lives people come and go the names and places change but the emotions are still there from those names and places. Scenes from one location happiness from other times in life it’s weird how the cards come out of the deck. I see it in some friends who try to hold me up but don’t know how much it will take out of me to stay around longer. How much physically and emotionally this does to someone you feel less than human, old, broken. Believe me going into my third round I know and don’t know what this will take. I know some of what I did before, but there will be new problems waiting to jump me. For those that don’t know by now. This will never leave my body. Part of all this is the isolation I think. I live in NJ, make car payments and insurance payments on a truck with 3800 miles that I can’t even drive. Then I have to be a teenager again and have to ask for rides around. I guess it’s my old independence and pride I need to kill off. I have great people around me but some that are well off are at different places in their lives and we all see the world different. We get older the parties stop the hanging around stops the fun slows down and life owns you. I have a lot to be thankful for in this crisis mostly some important people. But I hold venom for others that I have never let go of. You know the kind; family kind, neighbor kind, friend and old friend kind. All that crap bottled up makes for some of the bitterness I Have but if I was to air all that dirty laundry here we could make at least a couple TV soap operas plots. Yeah wonder why I can’t fall asleep. This is the worst time for that venom. 10-12 at night generally are the worst times. My mind just wanders over things places people happiness dogs freedom having my health a world I could have with out feeling like a charity case – No I don’t have the worst and I say that all the a lot nowadays and it seems to help shift the forum of conversation off my crap so I don’t have to talk about it (which is good for my anxiety) I think about military personnel and their families at war and it just makes me just anothe4r good cancer customer the money is in the treatment. One day I would like to have a dog again, or maybe I can just go to the farm where all the dogs are sent, I am glad my dad never told me that lie. They say you should have goals I will make that one, getting the dog that is. Tonight is the kind of night that makes you wish you had an on/off button. You know life is like a buffet every day and learning just what to put on your plate and what not to is the trick, you put too much of one thing it will make you sick, especially negativity. You can only handle but so much on your plate, and only deal with that, me I got my health things. If I miss saying happy birthday, or going out to eat with you I am sorry trust me I miss going out to eat also. So I am going to only put on my plate what I can handle each day, and I need my friends to sometimes help me eat the dessert of still living each day. Remember baskin robbins makes 31 flavors so I don’t have to like the one you pick, and I certainly ain’t eating it. Friends don’t expect 6 quarters back when they loan you a dollar. Don’t waste your days that are grains of sand slipping through your fingers. Now if you read this regularly, I will drop some random memories that only make sense to me and a specific person, stick with me on this, and they are in no specific order: By your side. Dude you got married based on a flip of a quarter. If you don’t like to eat food. He won’t trust you. He puts it all together. The nicest scar-face on the block. Mike Tramp? Mr. Bunny. 3:18 PM   2/25/05 Comedy Break Pulp Fiction: Divine Intervention: Samuel Jackson: God came down from heaven and stopped these mother fuckin’ bullets. John Travolta: I think it’s time for us to leave Jules. SJ: Don’t do that don’t fuckin blow this shit off. What just happened here was a miracle JT: Chill Jules this shit happens SJ: Wrong, wrong this shit doesn’t just happen JT: You want to continue this conversation in the car or in the jail house with the cops? SJ: We should be fucking dead my friend what happened here was a miracle and I want you to fuckin acknowledge it. JT: Alright it was a miracle can we go now? JT: You ever seen that show cops. I was watching it one time and there was this cop on and he was talking about this gun fight he had in a hall way with this guy. And he unloaded on this guy and nothing happened and he didn’t hit nothing. Ok it was just him and this guy, I mean you know it’s freaky but it happens SJ: Look you want to play blind man go walk with the Shepard but me my eyes are wide fucking open. JT: What the fuck does that mean? SJ: I mean that’s it for me. From here on in you consider my ass retired JT: Jesus Christ SJ: Don’t blasphemy me JT: God Dammit JulesSJ: I said Don’t do that. JT: Hey you know, why you freakin out on us. SJ: Look I am telling Marsalis today I am through JT: Why don’t you tell him at the same time why. SJ: Don’t worry I will JT: I bet you $10,000 he laughs his ass off SJ: I don’t give a damn if he does SJ: I have just been sitting here thinking JT: About what? SJ: About the miracle we witnessed JT: About the miracle you witnessed. I witnessed a freak occurance SJ What is a miracle Vincent? JT: An act of god. SJ And what’s an act of god? JT: When god makes the impossible possible. But this morning I don’t think qualifies. SJ: Hey Vincent, don’t you see that shit don’t matter. You are judging this shit the wrong way. It could be god stopped the bullets or he changed coke to pepsi he found my fucking car keys you don’t judge these things based on merit. Now whether or not what we experienced an according to hoyle miracle is insignificant. What is significant is I felt the touch of god. God got involved. JT: But why? SJ: That’s what’s fucking with me, I don’t why. But I can’t go back to sleep. JT You’re serious? You’re really thinking about quitting. SJ: The life? JT: Yeah SJ: Most definitely JT: Fuck What you gonna do then SJ: Well that’s what I have been sitting here contemplating First I am going to deliver this case to Marsalis. Then basically I am going to walk the earth JT: What you mean walk the earth? SJ: You know like Kane in Kung Fu Walk from place to place meet people and get in adventures JT: And how long do you intend to walk the earth SJ: Until god puts me where he wants me to be JT: And what if he doesn’t do that? SJ: If it takes forever then I will walk forever JT: So you decided to be a bum SJ: I will just be Jules Vincent, nothing more nothing less JT: No Jules you decided to be a bum just like all those pieces of shit out there who beg for change who sleep in garbage bins and who eat what I throw away. They got a name for that Jules it’s called a bum. And without a job a residence or legal tender that’s what you are going to be a fucking bum SJ: Look my friend this is just where you and me differ JT: Jules look what happened this morning I agree it was peculiar but water into wine SJ: All shapes and sizes Vincent JT: Don’t Fucking talk to me that way SJ: If my answers frighten you Vincent then cease asking scary questions JT: I’m gonna take a shit Let me ask you something, when did you make this decision, when you were sitting there eating that muffin? SJ: Well yeah I was sitting here eating my muffin and drinking my coffee replaying the incident in my head when I had what alcoholics call a moment of clarity. JT: To be continued 1:49 PM Tuesday, February 22, 2005   Well my meeting last week never happened so that's another reason why we haven't heard anything. It is taking place today so hopefully tomorrow I will hear about what is going on. They are thinking that once they get the plan together we will move quickly since it seems I am having so many problems. And if you thought the last post from Sunday had a lot of events. Monday I had 53. Still waiting. 3:11 PM Monday, February 21, 2005   Raw Data, again date then number of seizures 15- 9 16- 12 17- 17 18- 22 19- 28 20- 29 This is what I did with my Sunday how did you spend yours? Sunday February 20, 2005 12:25 am Aura 1 minute Sunday February 20, 2005 2:15 am arm tic Sunday February 20, 2005 9:00 am aura Sunday February 20, 2005 10:00 am aura Sunday February 20, 2005 11:00 am aura 1 minute Sunday February 20, 2005 11:30 am strong facial tick Sunday February 20, 2005 11:50 am Facial tick and aura Sunday February 20, 2005 12:15 pm aura 2 minutes Sunday February 20, 2005 12:40 pm aura 2 minutes Sunday February 20, 2005 12:50 pm facial tick and aura 2 minutes Sunday February 20, 2005 1:10 pm Facial tick and aura 2 minutes Sunday February 20, 2005 1:40 pm aura 1 minute Sunday February 20, 2005 2:25 pm Facial tick and aura 2 minutes Sunday February 20, 2005 2:40 pm aura and facial tick 1 minute Sunday February 20, 2005 3:15 pm 2 minutes aura and facial tick Sunday February 20, 2005 4:00 pm 2 minutes aura and facial tick Sunday February 20, 2005 4:40 pm 2 minutes aura and facial tick Sunday February 20, 2005 5:00 pm 2 minutes aura and facial tick Sunday February 20, 2005 5:30 pm 2 minutes aura and facial tick Sunday February 20, 2005 6:00 pm 2 minutes aura Sunday February 20, 2005 6:25 pm 2 minutes aura and facial tick Sunday February 20, 2005 6:40 pm 2 minutes aura and facial tick Sunday February 20, 2005 7:35 pm 2 minutes aura Sunday February 20, 2005 8:18 pm while talking 2 minutes aura and facial tick Sunday February 20, 2005 9:45 pm Strong facial tick Sunday February 20, 2005 10:00 pm 2 minutes aura Sunday February 20, 2005 10:25 pm 2 minutes facial tick and aura Sunday February 20, 2005 10:55 pm 2 minutes aura and facial tick Sunday February 20, 2005 11:05 pm 4 minutes aura and facial tick If you think reading that list sucks, try living it. It's like my life has a commercial schedule!! I only left the house 3 times last week quickly to go to the store, to get food, and the post office for a total time of maybe an hour and a 1/2. I almost heard what happened at that doctor's meeting about me last week. When the woman called to tell me I told her, I am having a seizure (big suprise there) can you call back in 5 minutes, usually they are really good, but I never got another call so I don't have any more information. And they were closed for presidents day today also. At this point I would almost feel safer in the hospital with all this activity. I have a bag packed and ready to go. It will give me some new scenary also, although it will make seeing Heather tougher, being in NY, and that will be hard. Tom Petty "The waiting is the hardest part". So you know where to find me now at home!!! My biggest fear with not having this crazy schedule under control is that it will be doing damage to me. I did get a response from my one doctor, who was at my meeting, via email about my increase in seizures: Hi Bob We just need to treat the underlying issue. I just don¹t think you cantolerate any more meds Can someone put in english treat the underlying issue, that is so doctor speak. 1:50 PM Wednesday, February 16, 2005   2/16/05 OK self loathing post if you want to laugh go read the funny papers. So as you can see from the previous post’s numbers, everyday is an adventure. I know they will definitely happen just at what times. All the med’s I am on which are all rearing weird side effects in me also. The trouble with the med’s is they are only band aids over the pumping artery. They don’t fix anything, they just try to mask and suppress it from happening now granted my events now are easier than some of my more past violent trips. I just have a fear now of going places, it’s not even the thing about hating people, that I can get over. I just know that I am always a ticking time bomb. I was looking through my calendar over the last year for taxes and I would see months where I maybe had 1 or 2 episodes. I would call that a good day now. I feel like my physical quality of life is slipping, I know I am only a couple days away from an outline of a plan hopefully. I try to always stay in the here and now and I am not concerned what I can’t fix in the future. But it is always looming. This is truly being disabled. I have been trying to fix my social security disability, but everytime I call I get a different person and different answers. The last time I called I was laying facedown – mid event and told the lady that if I left the call I was having a seizure. She repeated back to me did you just say, I said yes, and I need to get my disability payments straightened out with you. Oh, is it straight, no, she scheduled a time for someone from my local office to call me in March, her first available appointment time. I told her I have a looming surgery date and might not be around, her answer, well call back and we will change the call. I need the check! Well actually my house wants the check for the bank. I used to love wrestling and sorting all this stuff out on the phone. I mean hell I used to get paid to get rejected, by selling. But now doing it drives my anxiety through the roof, to where I don’t even want to do it, but I have to keep the parts moving. Med’s coming in, paperwork moving all that stuff, all calls that have to be kept up on. My close friends are really helping me through this time. Even not so close anymore people drop lines that will pick me up. I saw a couple yesterday I was dizzy as hell felt totally stoned my pupils were dilated like dimes. I always said it’s the not knowing that can be worse than knowing, you gotta see me when I start self-diagnosing, I get crazy. Thus I am and never will be a doctor. Besides everyone knows it’s living that will kill you. I am at peace with the whole drama this time. I have reason to fight and I don’t want to punch out, but I see a lot worse around me. Especially when I see a kid with my problems I always think, I got a lot longer to be free of suffering. Bob Dylan Tryin’ To Get To Heaven People on the platformsWaiting for the trains I can hear their hearts a-beatin' Like pendulums swinging on chains When you think that you lost everything You find out you can always lose a little more I'm just going down the road feeling bad Trying to get to heaven before they close the door Lou Reed From album magic and loss Magician Magician, magician Take me upon your wings, and Gently roll the clouds away I’m sorry, so sorryI have no incantations Only words to help sweep me away I want some magic to sweep me away I want some magic to sweep me away I want to count to five Turn around and find myself gone Fly through the storm And wake up in the calm Release me from this body From this bulk that moves beside me Let me leave this body far away I’m sick of looking at me I hate this painful body That disease has slowly worm away Magician take my spirit Inside I’m young and vital Inside I’m alive, please take me away So many things to do, it’s too early For my life to be ending For this body, to simply rot away I want some magic to keep me alive I want a miracle, I don’t want to die I’m afraid that if I go to sleep I’ll never wake I’ll no longer existI’ll close my eyes and disappear And float into the mist Somebody, please hear me My hand can’t hold a cup of coffee My fingers are weak, things just fall away Inside I’m young and pretty Too many things unfinished My very breath taken away Doctor you’re no magician And I am no believer I need more than faith can give me now I want to believe in miracles Not just belief in numbers I need some magic to take me away I want some magic to sweep me away I want some magic to sweep me away Visit on this starlit night Replace the stars the moon the light, the sun’s gone Fly me through this storm And wake up in the calm I fly right through this storm And I wake, up, in, the, calm For all this morbidity (is that even a word), to wrap up on a positive note, I am at peace in life. I think it is because I am no longer longing / looking to fill that hole in my life. The emptiness I lived with my whole life it seems. She is right at my side everyday. Thank you Heather. 4:31 PM Tuesday, February 15, 2005   Raw Data for how we spend our days on disability. The first number is the date the second is the number of seizures per day. February 2005 1- 3 2- 4 3- 4 4- 4 5- 2 6- 4 7- 5 8- 4 9- 3 10- 7 11- 4 12- 3 13- 6 14- 5 Any questions? 5:56 PM Thursday, February 10, 2005   Thursday February 10, 2005 I have been pretty tired all week and experiencing a few more aura’s (light seizures) it seems daily. I have not wanted to really go out much because of this. I just don’t want to be compromised out in public, but I do what I can. I am not going down to see my nephew this weekend because of my energy and health issues. It just stinks, I really wish Dennis, his wife and Matthew were around here. It would be great to see them on a regular basis. I am hoping I can get some blood tests done for Saturday to get to my doctor’s for Monday that way they can tell where my platlets stand for surgery. I swear you have to walk paperwork down the doctor’s office hallway yourself. I over-nighted my disability paperwork to the doctor and 3 business days later still not touched. And I asked about updating my scrip if that doesn’t go through I will be out of drugs. I am on 3 anti-seizure drugs and you can’t go cold turkey on them. All three combined aren’t controlling it, now drop one out. Hello I am a milkshake machine. I had a great dinner here with Felix tonight. Salad, Baked Ziti, and baked apples and cookie dough ice cream. Then I promptly sent him home to his wife! I told him up front no TV in the living room, that means we are not sitting around the tube. And stop looking all over my house at my stuff like what would look good in your place. I want to end on a positive note here, I know some of you will be disappointed with that. There are some people in my life that really make fighting this crap worth it. My father and step-mother are always at my side. Heather is an angel on this earth, I still don’t think she believes me. But I see where she gets it from, her dad likes Rock N Roll and her mother is and has always been very nice to me. I have some long time friends John John, whom I know the longest, I had lunch with him and his wife (who I went to college with, and he only met based on a flip of a quarter, and lot’s of alcohol). I also got to see his parents and his brother and his kids, the whole family are like cousins to me, ok John John is a brother to me. Lenny O is probably next on the list as long time brothers. He met his angel a long time before me, his wife Bonnie, and their new angel Grace his daughter. Brooklyn Bob. There is a whole motley crue of friends that I spent up to 15 hours a week with on the bus Felix being the ring leader (He put this thing tu-get-her). Liz, Barbara, Claudia, Mike, Mike, and all other head nodder’s I don’t know your names. I don’t miss the ride one bit. Just a whole bunch of great people in my life, and local that will help me when I can step on my pride and ask (don’t worry I don’t need anything right now, except a new brain). My co-sick-mate Nyerere in Georgia, I miss ya! Face it you only are still reading if your name hasn’t been read yet and you want to see if I will forget you. Jason O. Thanks for your support, and on that note Mr. and Mrs. O. Keep the sun shining in Florida. Doug….. Happy Friday. People from my old job that are pulling solid for me, Dawn, Doug, Nigel, Jake, Al, Renato, Holley, Molly, Cathy Bennett, Tora, Josh, Paul, Danny, Vanessa, Spencer, Margaret, Hiram, Spencer, Karen, Rich, Sarah, Dana, Jessie, all you cat’s thanks. And oh, even though he hasn’t told any one, because most of you work on junkie PC’s Rob is pulling for me. If I haven’t put you up properly I apologize this is going on a little long. So I am just cutting the bit. A big up to all the rest of y’all. And just because you showed me attention the first 2 times doesn’t mean you don’t owe me attention this time. Coming soon fundraising for me based on the over / under numbers on my weekly seizure’s coming to a bookie near you. 10:09 PM Monday, February 07, 2005   Monday, February 07, 2005 So I have no new date yet. The doctor's are meeting by committee. The great part about this is they get about ½ dozen super genius’s that went through way more school than us to make a group decision about how to keep me kicking. So you don’t have one doctor’s experience but a whole team deciding your fate. I hope none of the doctor’s wives pick on them that morning. I also at the same time since I just came off maintenance round of chemo have to make sure my platlet levels are high enough for surgery. In short the chemo knocks down my bodies ability to make new platlets thus when I cut myself I bleed more, this can’t be good for surgery. In shorter I need to do a couple blood tests to make sure my levels recoup before I can get cut. So cut date is probably 3-4 weeks off I am guessing. Overall today I was really tired. I am glad I am not at work I don’t think I could make a whole day of commuting and working anymore. I have been hanging in there. All I got is the minutes in front of me. I will have plenty of time later to complain about being in pain and not wanting to do this all again so I am trying to bank it up until then. I have gotten a lot of my stuff around the house in order, and that has been therapeutic, this way there is something I have control over. 5:34 PM Tuesday, February 01, 2005   Alright everyone hold their horses. Felix is not getting my snow blower - mainly because I don't have one, but if I did and he asked, I would have to grant this to my brother! I have the instruments accounted for so far. I cleaned them up and have to deliver them. I don't have a table date yet for surgery. Probably end of Feb or early March. Seems far away but for me too close but they want it sooner than later. Me I don't know I have to show up and get my ass kicked again. I feel like that dog that continues to poop in the house and never learns because the only attention he gets is negative attention. OK this one is a stretch of analogies. I am just saying that this is the third trip. I don't want anyone thinking this will be the time that fixes everything. This thing will never go away it is a fight between time and when this thing takes me. Have a good day! 3:22 PM