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   Thursday, September 25, 2003   So I am realizing I guess that a lot of this blog is dark. I guess if you are feeling happy and want to take the edge off this is the place to come. And all those people that yell it could be worse you could be in a lot worse shape. So if I was would I have the right to bitch then as opposed to now? I dunno any-who. Big action this weekend I might actually go out on a Saturday night. Billy Hector kids he plays 5 minutes from my house twice a month, and I haven’t been out to see him since like Oct / Nov of last year before all this stupid crap. I have been wanting to go for months I was mad I couldn’t make his birthday gig. OK some of you non-believers don’t know the great Billy Hector. Go to www.billyhector.com quite possibly the most kick ass blues guitarist of our age (or one of). And he is playing the Stanhope house this Saturday. I have enough white cells so I am safe to be around people. So I have roped a couple friends into going I think and will mooch a ride off of them. I always thought about taking a cab to a show. I just don’t want to go anywhere alone now in case I have a shop-rite episode. I have to keep myself aware of my limitations. Some people might think I am self-limiting myself. But picture this: I say F it and go alone. I have a seizure, and no one there knows me. What if it got in the way of Billy’s performance, I wouldn’t want to upstage the MAN. So there is a positive swing to this page. Billy Hector Saturday, unless everyone backs out on me. Then I will bitch slap you all right here so don’t do it. Other news I don’t know nothing new. I have a couple doctor appointments next week, I will see what becomes of that and update y’all accordingly. And as always I add rants as they come along. Can TV be more morbid than parading the ghost of John Ritter out there on TV. HEY, look at this he’s dead but we can sell his last 3 shows for lots of money and then we will kill him off in the show (can you say jump the shark?) Carnavale on HBO I wish they would finally put some of all this set-up to use. It is like reading a book with 2 episodes of set-up. But the coming episode for the 3rd week looks good. I mean I thought the Sopranos started a lot of threads. This show is way deeper than that. When you stop the life train, take away the work, the running around, all the crap that distracts you from yourself, and having to deal with your own head, there are a lot of questions. There was a time when I used to run around like crazy, working 2 jobs, joined a gym, for all the free-time between the 2 jobs, bought a motorcycle to obsess about a new hobby, had a couple cats.. the works. I never stopped so I never had to deal with the questions or feelings, I kept a couple feet ahead of myself at all times. It wasn’t that bad of a time, as long as I never stopped, or else I would catch up to myself and have to deal with the emptiness that was there. I had all these plates spinning in the air and never wanted to drop one. I guess eventually I dropped the largest one and got sick. Then I just ran through that one like, “Fuck that tumor” and it kind of came and went and I denied the whole damn thing. I was also pretty medicated. I ran like a bat out of hell back to my life after a minute of drug induced stupidity where I almost thought I might change something. But then I figured why the hell should I? Well I got almost 3 years out of that run being 1 foot a head of myself. I no longer had as many distractions, but I did try to stay busy and work as much as I could. There was a small period where I didn’t actually work 2 jobs. Then BAM, it came back, and now everything has changed this whole year. I have been 2 feet behind myself the whole year, and it has still flown by, where I have accomplished nothing, well except that healing and chemo stuff… ok so I was pre-occupied with the drug stuff. But someone once said that the surgery stuff turns into a bad dream later on. And once you are past this chemo stuff you kind of block it out of your mind. Who the hell wants to remember that crap anyway? So now I am at another crossroad of trying to see if I feel up to trying to work again. I have a great fear about the crazy seizure trip. It obviously isn’t under control yet, and who wants to be on a bus or at a new job and have it sneak up. I kind of feel a new job and stress of work would work me up to be pretty stressed. I am trying not to think about it, but to procrastinate it a bit. I have to discuss it all with the doctor next week. My recommendation to everyone run as fast as you can 2 feet ahead of yourself at all times. If you start to ask yourself questions or have to deal with too many skeletons in your own attic run faster. I miss running. The questions to avoid is knowing why we do things. A lot of psycho-babble crap. What we are really looking for, what are we running from. Where we are running to. Why we do the things we do, act the way we do, look the way we do. OK if I still had my rock star hair do I would have almost looked like the greek poser guy on queer eye. He made me happy I cut my locks. Now more than ever I have been slowed down so bad, and think well I am on borrowed time and 3 strikes I am out. This seizure thing keeps me just in check enough so that every-time I think I want to sell the house buy a bike and ride off and start over somewhere else. My brain says… um yeah we won’t let you ride a bike. Wrong answer retard. So I get to thinking and I want to do better things with my time sometimes. Like how could I get involved to help people? Well I have to be able to get out of my own way first things first. I mean is someone wants to drive up to my house and pick me up so I can help them, then I can come up with a system. But usually people need you to come to them. And what do I mean with helping people. I don’t know exactly. That is the other problem. I mean the only way to make a living at it (not that I am trying to abuse the needy, it’s just the mortgage company doesn’t accept a check of good deeds at the end of the month) Is that you need some degree or something to really make a go at something. I mean I would not mind volunteering with some stuff. What exactly I don’t know. When I was in Morristown Memorial Hospital for what I call hell-week. There were some volunteers that came around at night to talk to people, there was one person that would play guitar, and another one that would give you a message. I never saw the guitar player I don’t think. The masseuse I just thought who would want to touch a guy that hasn’t had a good shower in like 4 days. Sponge / towel bathing is not the same. So vanity got in the way there. So like I was saying this one woman volunteer came around and you know me I can get to talking sometimes, and in the hospital it gets lonely, especially when you are isolated. There are those really beat times like after visiting hours to until breakfast. Those hours suck. During the day that is broken up by at least 3 meals and sometimes you get a visitor during the day and night. So it was cool we talked for awhile and I found out about what she did, and I told her about my condition and crap. There are also clergy that come around and talk to you, but not being a proper church going guy, I always feel like I am going to say the wrong thing or that I am a sinner or something, even though I am Presbyterian which is not really a very strict church. I don’t know. The point to this whole thing is and as this blog will show you, I can talk a lot and I always thought that maybe something like that is something I could do. Go to the hospital and just talk with people. If you can find an older person that could be a great experience I think. A lot of people have lived through so much. And many people get lonely. So I guess now that the cards are down and I am looking around maybe I am not supposed to go back to running so far ahead. I guess it breaks you down. Who knows people read what they want into anything and everything. So that is my inspirational story for today, Bob wants to help a little! Or a do-over of my life, but I aint getting that, because I would call a time out by 27 at the latest, and want another do-over so none of this happens. I want a trade in. A 14th chance at this life. 10:00 PM Tuesday, September 23, 2003   OK here is the skinny from my neuro-oncologist (head cancer doctor) about where I am at with my condition, I tried to through in a couple comments to explain some stuff you will see them in parenthesis. If you have any questions email me at b_blasser@yahoo.com. But most of this has some attached stories explaining more of these events in detail earlier in my blog. This covers some of my history with this hell in a compact version. Enjoy! It cost my insurance companies a lot of money to bring you this story. August 28th, 2003 RE: Robert Blasser Dx: Oligo-astrocytoma, Low/Intermediate Grade Recurrent DOB: April 12th 1973 (Current Age, 30 yr old) I met today with Robert to review his recent MRI of August 26th, and to discuss plans for his future management, in view of my imminent departure for California. (for those of you who aren’t aware on neuro-oncologist at NYU has moved to UCLA) I am pleased to report that his brain MRI remains entirely stable, without evidence of any new gadolinium enhancement. More importantly, MR multi-voxel spectroscopy and perfusion imaging are entirely without FLAIR/T2 residual abnormality being gliosis rather than residual tumor. (He is thinking that there is nothing new in my head, a lot of people knew that already and have been big supporters of the fact that my head is empty. But I have seen pictures of a brain in there I swear.) Robert himself, as you well know, has not recovered his blood counts following his last cycle of carboplatin/ temzolomide (the 2 chemo drugs I was on), and required a platelet transfusion yesterday, and is also re-starting Neupogen (shots in my belly to help my low white count) due to his ANC dropping again to 400/mm3. History of Present Condition: Robert initially presented on October 10th 1999 when he experienced a partial complex seizure: he was in the middle of a conversation with his girlfriend when he became aware of his eyes then his head deviating to the left; he was well aware of the event, was able to describe what was happening to him, jumped up and “snapped out of it”; the event lasted no longer than 20 seconds. The following day, while walking down a corridor at work, he experienced a second episode, his eyes move to the left, followed by his head. He walked to the mens room with a friend, asked for assistance, became incoherent, and dropped to the floor. He was apparently “out of it” for about 3 minutes. He was transported by EMS to St. Claire’s Hospital, where a brain CT scan revealed a right frontal lobe lesion. (Stay away from St. Clairs in the city if you can). Dilantin (Anti-seizure medication) was given and he was transferred to NYU on October 13th following consultation with Dr. Devinsky. A Brain MRI on October 15th revealed a minimally enhancing 3 cm x 3 cm lesion in the right posterior frontal lobe. On October 18th 1999, extra-operative functional brain mapping was performed, with placements of subdural and depth electrodes. (I went in for surgery to put a “brain mapping device into my head to help located the important parts of my brain for surgery. Basically they opened me up, put a piece of some material with electrodes on it, closed me up and left a bunch of wires coming out of my head. And oh yeah a piece of my skull was put on ice until my next surgery). No seizures were recorded. (They really wanted me to have a seizure while this map was in my head to locate the bad area, but I didn’t have one for them). On October 25th, a right craniotomy was performed by Dr. Werner Doyle. (Picture the coolest brain surgeon who loves the stones and zeppelin, only I would find this guy, he’s good!!) The post-op brain MRI performed on October 26th confirmed a near total resection of the tumor. (Dr. Doyle said I couldn’t have planted it better for him to remove). The pathology was called a difuse low-grade ganglioglioeurocytoma by Dr. Douglas Miller at NYU. Review by Dr. Marc Rosenblum at MSKCC yielded a diagnosis of low-grade oligoastrocytoma. (Don’t ask me I look up the names, but it seems all the doctors have their own nomenclatures for tumors). Robert was switched from Dilatnin to Tegretol, (again my current anti-seizure medication, I have been on it for almost 4 years). and subsequently followed with serial follow-up MRI’s, (first every 3 months for a year, then every 4 months then every 6 months which led me up to my 3 year anniversary of my tumor where I was caught recurring) which were entirely stable until the study of October 15th 2002. This study demonstrated some extension of the T2/FLAIR signal abnormality inferiorly to the operative cavity, without any obvious gadolinium enhancement. (Basically I had a recurrence on my motor controls side of my tumor cavity hole in my head, the wrong side to have the recurrence on) Accordingly, I referred Robert to Dr. Werner Doyle, who re-operated on him on January 17th 2003, with resection of the recurrent tumor. (He pulled out what he could). The pathology at NYU, reviewed by Dr. George Kleinman, was called a recurrent ganglioglioneurocytoma, but far more densely cellular than the initial tumor in 1999, with fewer oligo-like cells. The MIB-1 index (how they rate tumors) was also increased focally to up to 15%, compared with the initial tumor, raising the concern that this tumor was developing anaplasia (malignancy, this tumor was worse, they always are when they come back, they are more aggressive). Review by Dr. Marc Rosenblum, however, still held that the tumor was a low-grade oligo-astrocytoma. Accordingly, after much discussion with my colleagues as well as with Robert and his father, I elected to treat him first with as aggressive chemotherapy regimen on an NYU IRB-approved protocol, including temozolomide (150mg/m2/day x 5 days) and Carboplatin (AUC = 8 per day x 2 days), cycles to be repeated every 4 weeks for a total of 4 cycles. Robert has now completed his four cycles of chemotherapy, but has experienced, not unexpectedly, significant myelosuppression with delayed recovery, necessitating use of platlet and red cell transfusions, as well as Neupogen, and Neumega (and Procrit – they are all injections to help with my blood counts being suppressed because of the chemo-therapy). He has I believe required one or two hospitalizations (one and it quite possibly was the worst friggin week of my life) for febrile neutropenia (basically you have a bug or a cold and no white cells to defend yourself). Of note, concomitant with each 5-day cycle of chemotherapy, he experienced break through seizures, likely due to chemotherapy causing increased hepatic catabolism of Tegretol, resulting in sub-therapeutic levels. Impression and Recommendations: Clearly, any further therapy must await complete resolution of his pancytopenias. (getting my blood counts back) However, after his next brain MRI in 2 months’ (the end of October) time I would recommend his starting up the following “maintenance” chemotherapy regimen, which should be extremely well tolerated: (a) Temozolomide at 75mg / m2 / day x 42 consecutive days at bedtime followed by a 14 day break. (b) calcitriol 0.5ugm daily continuously. I would check his LFT’s every 2 months, and, at least initially, his CBC every two weeks. He must hold the temzolomide for at least one week if he develops any infection, cold or fever, etc. In review of his relatively low/ intermediate tumor status, his young age, the mixed (oligo-astro) nature of the tumor – all of which portend a much more slowly transforming tumor – I have not recommended either irradiation or myeloablative chemotherapy with autologous stem cell rescue to obviate the irradiation. Certainly, one more recurrence, and the latter approach is absolutely that which I would recommend. (great one more recurrence – hey now that I know what I am in for, I will chose wisely before anymore treatment dammit!) It has been a pleasure being involved in his care, and I do so much appreciate your own heavy involvement and commitment to his day-by-day management. Jonathan Finlay, M.D., Director, Neuro-Oncology Program The NYU Cancer Institute 2:56 PM   Things continue to evolve and change in my asylum I call a mind. Lately I have been wrestling with trying to get back to work now that the “labor intensive” part of this misery is over. This has been racking my mind a bit. I mean they aren’t going to let me behind the wheel of a car anytime soon. Everything I want which is to get back to having freedom in my life is not here with me. I have gotten my doctor visits down to once a week. That is pretty liberating. Things change and evolve with this whole condition. In the bat of an eye you can think you are 2 steps forward only to realize that you are still at the star square on monopoly, and you are never getting the dice. I have been making car payments, and insurance on my car all year. I haven’t driven it since December. Payment $370 insurance $120, that makes 5 bills a month to support a car sitting in my driveway, and the only safe way for me is on 2 feet and even that is questionable. Last week I actually took the mountain bike out for a ride, which inspired me to clean the dirt and grime that has built up over the years. I pulled the tires, cleaned between the sprockets type of clean. It looks good, and has taken some abuse. I was thinking about trying to get back to work, make it through the winter. And in the spring see where I am at, to see if I need to adjust my life, like if I was free to do as I wished. I would buy a bike and move to a better climate, sunny all year little rain. But life isn’t working out any way that I wanted it to. So we all know the adage that life can change in a blink of an eye. Friday we were in Shop Rite getting the weekly necessaries together. I was rolling the cart past the Entemans cakes, you know the rack that no one needs to buy from but we all do. BAM, my left side of my face starts twitching. I move towards Mo “Sei, Sei, S”, this is it, it is actually going to happen in public, twitch twitch twitch. One of my greatest fears has come true, twitch twitch twitch. I ran towards the bakery display, I just kind of wanted to hide somewhere, tick tick tick. This is another thing I have also thought about, where can I hide if it hits tick boom boom. So I got down to the floor and things just went out of control from there. Boom boom boom boom as it twitched my entire face, and I thought to myself, St… St… St… Boom boom boom, then it lulled a little, tick tick tick, I am thinking ok I am coming out. Then my hand got into it. So I think maybe trying to say stop is not helping boom boom boom. Behind me and above me I could hear people talking, boom boom boom. “Is he alright?” “Yes he gets these all the time” boom boom boom I mean hey you just want people to know nothing major is going on, I am just not in control of my frigging body. Boom boom boom “Can we get him anything?” “Do you need anything?” boom boom boom. Try a new brain! I want to turn over to see who these people are but I can not control my body. Boom Boom Boom. This is going on for like 2 minutes right here on the Shop Rite floor. Then finally, release I rolled towards my back and said,”Dun” “I’m o hey” Hey talking is really slurred at this point. I can’t really feel my legs or my left arm. Mo was holding me up. “Relax” “Don’t worry” Easy for everyone else to say they are all walking and talking. I made a plea to let me get up no one thought this was a good idea. Probably better off I don’t think I could stand. Someone showed up with a blanket, someone else with a cup of water. Then someone else with a bigger cup of water. The only joke I could think of which I kept to myself was, does this get me free groceries? Someone then rolled up the wheel chair cart. How old am I? I feel like grandma now. I don’t know who but they helped me up into it. So now I was sitting up. They gave me water to drink. I was shaking so much I couldn’t hold the cup. The manager of course doesn’t want me up and about, he suggests we use the wheelchair cart. The cart section is as big as a basket that you would carry in a store, of course this isn’t going to work. So I told Mo, to bring the basket over and I would use that to help me walk. She brought it to me and I stood up. At least I could hide the fact that I was using a walker with this thing. My left arm was numb and my left leg was kind of lame and dragging along with me. It was quite shitty. Mo was helping me steer because I was turning left a lot I think, I really couldn’t feel myself so I didn’t know if I was pushing or not. We went got some meat for grilling. I have a pretty good case of the dizzies at this point also. I just have to keep in mind that it is me spinning and if I hold hard enough to the cart it is not spinning, although it is on wheels. We went up the cereal aisle I went to grab a box or cereal I stuck my left arm out to grab it, and it just hung out there, the hand didn’t grab. Hello these are things we don’t even think about, there’s the box and you stick your arm out and the hand does its job. Well not the case on Friday, so I reached over with my right arm and grabbed the box. These are the times that suck. So we make it around the store, I make it up to the register and now I have to put all the stuff on that conveyer belt. I put my price plus card in my left hand. I of course couldn’t feel it there so I dropped it. Great I have to pick it up off the floor. Hey anyone want to take me food shopping now? This is my so called life. And I want to get back to work and commute why? Talk about turning my mind back again. “Just when I think I am out, they pull me back in again.” My mind is almost telling me, you aint going anywhere if we have anything to do with it. It kills me to think this is it. It is not going to get any better. I am that ticking time bomb that will never know when I am going to go off. No more driving, hell I shouldn’t be on a frigging bicycle. I could forget ever owning a motorcycle again. There was a small window in my life where I was free of this crap, and my own person, the rest of what I have on my undead clock is riddled with “events”. I can’t work independently outside of the house because I am bound to have a fit. I get caught up in thinking about it, and I don’t want to leave the house anymore. I don’t want to work, do anything. It gets you nuts. Do you know what it’s like to be held captive by your body. If you do then you understand. It is a crappy situation. To think that I to was free once but not no more. 12:42 PM Friday, September 12, 2003   The man has come around and taken Johnny Cash from us. If you haven’t gotten on the Cash-wagon the time to jump on is now. Pay your respects to the man in black. We have lost a great one. I have gotten onto a Cash kick in the past year, and have realized the music history in this artist. Don’t be afraid this has nothing to do with any Trisha Yearwood type of country this is good. Damn now all you band-wagon people are going to raise CD prices on half.com. “And I heard a voice in the midst of the 4 beasts and I looked and behold a pale horse and his name that said on him was death and hell followed with him….” “Everyone I know goes away in the end…” 7:58 PM   It’s been 2 years and there are those that say it is time to move on and heal wounds and forget. You are wrong. If you lived through it or around it you can’t forget or move on. It is something that is ingrained in your life. What these scum bags did to this country can never be forgiven or forgotten. There are people that died because the nature of their job was to risk life and limb to save people like you and I who just innocently went to work that day. There are the people that went in those 2 buildings that day just to put in an 8 hour work day. I dig John Lennon, but these people didn’t give peace a chance when they came and killed us. Our country has been way too lax with letting people live here. 1984 here we come. There are families, kids, parents that lost people that will never get over this waste. I remember at the time feeling like there was nothing I could do to help, but wanting so bad to go kill anyone involved in doing this. I figure if we bombed the whole region, took their oil we could build Las Vegas 2. People from all over the world would fly into these territories to gamble and we could dump all the profit into education for the USA. But enough about crazy theories, this is a never forgetter, you can’t walk away and put your head up your butt on this one. It is hardest for the families directly involved and then it has a ripple effect. If you live in this area almost everyone knows someone who was lost. There were some families who actually got closure if their family member was found. There are things you don’t forget wars, and the people that fought for this country and helped the effort, died for this country defending us so we can eat Klondike bars. Sept. 11th should never be forgotten, if just for those people that died for us. The whole situation was a spit in the face of our country. If all these hippy tree loving types that oppose us using force like to be spit on send them to live in these dictatorships to be stoned to death in place of our innocent lives. 7:49 PM Saturday, September 06, 2003   The boredom seems to drag on and on. We get rainy days ½ the week then the weekend is beautiful and I am in the house. I don’t live on a busy street there is nothing to watch outside. No one to talk to, I guess this gig is getting old. It’s like what am I going to do with myself. There are only so many times I can do nothing. I am stuck here with no where to go nothing to really do. In a holding pattern. I guess the good part is if there is nothing to do I can’t get into to much trouble. The book I am reading is boring, I have been trying to get through this movie W;t and every time I try to watch it I get interrupted. Today was the 3rd time and 3rd interruption. I guess it gets back to the distancing part to this whole thing. When you are alone with no one around and you can’t go out and do anything due to your illness, you are really alone. There is no weekend fun and running around. Hell I can’t even get milk unless I walk like 2-4 miles to either quick check or pathmark. It is a blast really. Like I said earlier motivation is at a zero. I think about doing things like walking to the store but I just sit here and wait for my next meal, next meal, then for sleep to come and turn me off for another day being on hold. Nothing new to report, why are you still reading this, you are a morbid bastard. 6:36 PM   There was this dog once. She was a little crazy mutt. Half Beagle, half Dalmation, she had several names and answered to them all. Patches, Little Girl, Little G to name a few and then I made up others as we went along. She was a quiet mutt, but always spoke her mind and barked. I remember when I used to travel and come home late at night. The best time was when I would come home and open the door and there she would be and she would jump up on me. We are talking all of 35 pounds so it was cute she didn’t knock you over. She was the boss dog of the house. Chased the cats at will she had no time for them. Even when we got a puppy, she ran his life at all times. Her passion in life simply put food. 2 classic moments in Brooklyn when I walked her; one day she picked up a whole slice of pizza in her mouth and turned to me, another time a whole bagel with cream cheese. Try cleaning that up while you walk home without a napkin. Patches was a kick ass little mutt. She would bark from her dog bed whenever she heard something. Keep in mind she would not get up, she would defend her house laying down and barking laying down. That’s what she had the dumb puppy for, he checked all the windows for her. This dog actually smiled, ever see a dog smile? Patches passed away about a month ago. The big C got her. We will always miss that little mutt. This is why pets are so hard to keep. They never hurt anyone, just love, and they are taken from us so fast sometimes… I know this bar With a jukebox full of medicine And Christmas lights blinking Around a clouded mirror It’s not that far From old voelkers bowling alley Just go up there and turn right It’s about three blocks from here You’ll probably find Grace Her shift starts around happy hour She’s got this sweet face Easy as tea leaves to read You gotta know what to look for You gotta know what’s there to find But then I guess you don’t really know her So nevermind I used to hang out a lot around there In that part of town Where all the white kids Still have feathered hair 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 Wouldn’t it be great to go to a bar like this, or better yet to own it. A really cool place killer jukebox, and you know the clients, the works. Get cheers out of your mind. Think the part about the Christmas lights around the clouded mirror. We have all been in that place, that you have never seen by the sunlight and never will. A pool table in the corner and all. Totally reminds me of a bar in New Orleans (OK anything can happen in New Orleans). I went to use the bathroom and theres this guy just finishing up doing number 1 and a guy standing over the sink. Keep in mind the set up, sink and toilet. So I naturally hesitate a moment the guy goes, all you man I am done. So lets update the story. There is me a toilet a guy with a razor a sink and oh yeah a mirror. So I get about my business, and in that awkward silence to keep the peace I said to the guy, “You know, women don’t realize what we go through to look good for them.” Did I mention he had no shaving cream? Bar stories, there are a million of them in the big city. Music. Music is one of the simple pleasures in a big way. Not having my music collection would suck. I like having a library of stuff. A lot of the stuff I have only played once. Some stuff I have played the hell out of. There are those quintessential albums that you have to own. You all know them. They are few and far between not a bad song on the album. Usually they are the biggest of someone’s career. GNR Welcome to the Jungle, AC/DC Back In Black, Prince Purple Rain, NIN Pretty Hate Machine, Metallica Master of Puppets, Aerosmith Toys in the Attic, Beastie Boys Licensed to Ill, Cure Disintegration, Miles Davis Kind of Blue, Pink Floyd The Wall, There are quite a few, some over played granted. Must owns and then there is everything else I own. I get hung up on artists a lot of times and like collecting it all. Several artists I have their complete catalogs. When I was first home I tried to go CD by CD and list to everything starting in the A’s. I made it to the C’s and quite. I found myself forcing myself to listen to stuff I didn’t want to listen to at the time. I think my Attention Deficit Disorder got the best of me. I can’t stand still a lot of times and the project got old. I wanted to put on what I wanted to listen to when I wanted to listen to. That was a project born out of free time and boredom! 12:16 PM Friday, September 05, 2003   I have lost a lot of my motivation this year. I used to be a 2 job holding go all the time person. When you are forced to sit and relax and recoup for 9 months you get lazy. That is one reason getting back to work will be good for me. I almost feel like I get a little nuts when I am out of the house for too long. I mean I am nuts normaly so when you add these nuts I am like nuts squared some times. Like why add any more paranoia to the equation. Starting over would be killer just uproot and get away from the whole kit and caboodle. Think about it if you have lived in one area for a while you have memories by the ton. You drive by where you grew up and bang there’s where you used to ride bikes, you drive further you made out for the first time over there. You drive on and on and the further you go out a lot of times the older you get, but every time you go through or across the circle you have each piece flooding back over you. And the older you get the more this happens and the more you reflect. If you run away from all this and go somewhere else, would you leave your skeletons behind? Can you start over or do they follow you in forms of stuff you own, pictures you have, and memories. And when you go back to visit the old area is it more intense the memories because you haven’t been through that circle for a while. You know what sucks is that they change that cool little universe you grew up. They put up bigger buildings, the candy store changes, there are new stores right by your old house that weren’t there as a kid. Change can suck. Getting old sucks more. 30 has sucked real bad for me, I don’t know about you. If this is 30 for me if I made it to 60 I am going to be one broken up old fart. Contact with each other is all you got, the world will not stop turning unless we stop printing money. But we get more and more busy as we go on, think about how many people you take for granted every day and you are too busy to reach out to. Don’t do it, don’t ignore those people reach out to them, even the ones you really don’t reach out to often, don’t put it off to tomorrow, what if they stop printing money? My sister has 2 daughters, alright I have 2 nieces. The younger one is a terror, this is good, I get to watch her grow up and run crazy on my sister. I take great pride in this. But my point is I am up for the world’s worst uncle award. I am not proud of this. It’s almost stupid. As most of you know I don’t drive. So I don’t get around to stores as easy. So both my nieces had birthday’s this year. First thing I do is don’t show up to either party. Mostly due to health. But follow up, I dropped the ball. I sent the little one a card late with a gift certificate for toys r us. Then time slipped away with the older one. So I have to balance that out at Christmas I guess. Don’t line up this broke guy is not playing Santa Clause this year. I guess it’s the old saying it is the simple pleasures we miss. But wait have you ever heard of difficult pleasures? Would they be like sailing a boat? I mean that is a lot of work so it can’t be a simple pleasure. So if you miss pleasures would you miss coffee because it is simple but not sailing because it is difficult? I don’t know. But I don’t sail. But I do miss the simple pleasures like driving a car, come on this is a glorified version of sitting on your couch. I really miss the freedom I had being able to drive myself around, relying on other people is really against my nature. My whole being is all about, get out of my way I will do it myself. Since I was a kid I have been this way. I would rather do something myself than ask anyone to do something for me. This whole year has been a huge piece of humble pie for me. I miss being able to go to work each day. Trust me 9 months of this and you will wish to work every day you live until you die if you can just have your health. Without it you have nothing, and it is one of the number one things we take for granted. If we have our health we can keep kicking along until something breaks, if nothing breaks gravy keep pushing along. If the motor goes kaput, then game over you punch out. Simple pleasures = Ron and Fez, O & A, driving, working, money (OK this is a difficult pleasure, we need it to get by and it is hard to get any money to have pleasure with). Spending more time with friends, Billy Hector (I missed his big b-day party last week, first round was on Billy). Owning a bike, buying a new bike, taking a road trip to nowhere by myself for no reason other than the weather being nice and there are plenty of open roads out there. Being early 20 something again, better health, going to a gym, concerts. There was a time when the only needles I knew were from nipple rings who knew? I guess a lot of all this has been adding up now. I have a lot of pent up frustration. How much stimulation can months of B movies and Jerry Springer do to you. I mean I know when there are Springer repeats, in fact they have screwed up the schedule now (when you care about the schedule of Maury and Springer that is hardcore). I don’t know I am really just running out of laziness patience. When you start to feel better you get in a rage over being held back. O.K. some people would like to stay lazy but I want to get going again. Get out of my own way and start doing something. I just hate feeling worthless and doing nothing. I mean yes I have all the friends and family support and all that, but I just want to get up and get going already. I didn’t mind working, I liked getting up and going to work everyday in a way. For an old fashion crazy mind like mine it kind of gives me purpose. Now that is an area I can start over in. Kick a cat when he is down and out lay him off (I know you know this story). So now I can start over somewhere else and bury my history. Come on you are going to hire the guy that just killed a brain tumor? I am clear for take off though so that is what really matters. I don’t know maybe a little work related stress will do me some good and if I really miss Jerry I can tape him. “Yesterday is a memory Tomorrow is never what it’s supposed to be” “We barely have time to react in this world none the less rehearse” 7:44 PM   Frustration as always. My whites were up on Tuesday for the 2nd time in this cycle. They told me to stop taking the injections to help whites. Now when you stop taking the injections they should hopefully drop to a normal level. So today when I went in the whites were below normal again. I am not thrilled at all. This locks me up in the house again, and I have to be germ paranoid again. It’s driving me crazy to go up then down then up then down with the counts. I just want to get to safe levels again to start a normal life again. OK I don’t do things normally but hell just once I want to eat taco bell or Chinese food and not use purell twice before I touch my food. Heck I will live crazy. I haven’t eaten Chinese food all year, or taco bell either. Immune systems rule the world. It seems like lately I am starting to get reflective on the whole thing. Don’t let me fool you this whole experience makes you reflective and you wish for other parts of your life when things were better, because the certainly aren’t now. Like wow I went through what? It was total misery. May you never know, and other patients all say the same thing the doctors say things, but they will never know what it is like to go through it. You have to live it to really appreciate it, may you never know. There is the paranoia of germs and what not so to stay out of the hospital. Low platlets, red cells, nausea, all that other un-happy horse shit. You get frustrated and tired of washing your hands religiously. I ordered a hamburger once and I told them well done, burn it to a crisp. It’s almost a religion, no better yet a cult, you are a slave to your own body because of the toxic junk they pump in your veins. The cult part comes into all the other “cancer” people that meet at the cancer clinic 2,3, 4 or even 5 days a week you get to know people on first name basis. You wish you would meet these people on other terms, but here you are. You got 2 choices treatment, or no treatment. No treatment means you are on your own. So what do you do. People that say they couldn’t do it have never been forced to have to do it. Nobody would do it if they really had a choice. It’s been an adventure this year. And to think they originally outlined it so that I would be done by the end of July. It’s September, and already we have started putting Halloween stuff out. 2003, let’s call the whole thing off. I have kind of skipped the whole year. So no matter what this stupid crap in my head has taken a year off my life so far, I just had to live through it. I saw a shirt on a cancer site it said “Undead” pretty morbid sense of humor to pull that one off. I was really looking for the shirt Ozzy had on on one of the Osbourne shows that said Fuck Cancer. Reminded me of a friend that said Fuck that Tumor during my first trip almost 4 years ago. That was the theme of the whole first trip. I was in denial and the statement fit. I just want this final upswing to be in motion. To have the whites in a safe level, the platlets going up and the reds stable. The platlets won’t be 100% for awhile but they are on their way up finally. No more transfusions hopefully unless they do some wacky drop. I have no crystal ball for any of this, or I would have had more fun in my past. I have now memories and regrets of all the working I have done in my life and sacrifices I have made. It has gotten me certain things, the government lets me pay a mortgage and taxes for a little piece of America. Remember my lazy generation has this chance to own stuff and be lazy because of our fathers and grand fathers that were vets. 6:48 PM