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   Sunday, August 31, 2003   Sometimes you don’t know what to write about, but you feel like writing. It’s a forum to work out things to get it out of the crazy mind and out of you. Today is an example of a waste of a day. I have done nothing but sit around the house and eat. I don’t know it is like I still need to work out what I am doing or where I am going. The crappy part is still feeling like I have no control over anything yet. I have to start getting my stuff together to get back to having a life. I won’t keep this house for long if I don’t crush spending and watch the money again. I got a little careless last month. It is hard when you have been living under a rock for 9 months part of you just wants to get crazy and eat out when you can health wise. But money for that doesn’t exist. So maybe this is a sign of normalcy, worrying about money again I don’t know. This job search thing is going to be an uphill battle, which I am not looking forward to at all. Who does look forward to this? Cold interviews are such junk, so it is a matter of trying to network to get an “in”. It would be different to go back to a work week and to make a comfortable wage again. The money I have lived on this year is laughable. I have also been able to pay down most of my debt which is crazy also. I guess you get an itch at a time like this about changing everything around. Maybe I can get a new skill change fields, jobs etc. You tend to question everything. You are forced at certain times to make decisions and to change paths. It’s frustrating, and I haven’t even started yet. The lack of control I guess is a theme of the whole year. I am not allowed to drive, I had to have the surgery, I had to go through with the chemo, I have to look for a job, because someone else decided to take mine away. What else do I have to do, and can’t choose? Yes I am bitching again. It is my forum to do so. At 30 years old I have sat in the Morristown Clinic and listened to advice from people old enough to be my grandparents. And you know what it makes sense to me. Yeah 30 has been rough on me. 30 going on 60 it seems. Like I am an old man before my time (A grumpy one at that). If I was wine it would be time to drink up. The reflecting upon older times you do during this crap is crazy. You just wish for a time machine to go back to some other time to stay there. But most likely you would just have to relive all the torture anyway. To fast forward past all the torture, I guess that’s a concept. There are rehabs that put you asleep for your withdraw problems. Not a bad idea I guess. Maybe I am overanalyzing the whole thing but it seems for a lot of us this whole gig has turned out crappy. In about 20 years the whole way of life and work and family has been turned upside down. There was a time when a college degree put you in a guaranteed better position in the job force. You are not guaranteed anything anymore. 4 year degrees are a dime a dozen now. And if you don’t have one you kick yourself that you can not at least lay claim to that. So you regret your early 20’s for that then. The job force just sucks. A lot of us were sold a bill of goods. For our parents they all wanted to provide for us an easier way of life and a way to better ourselves. Quite a bill of goods. All the rules have changed a lot. How many people you know work 40 years at one company anymore? It’s all about going job to job now. Following the opportunities, wherever the hell they are. Look at all the IT jobs, gone to India now. I guess even the people that thought they were safe being computer people were wrong also. It’s all about whether or not you survive the next layoff or not. There was a time when families could live in a house on one income. Explain that one now. Maybe it’s this region of the country that makes us so subject to stress and cynical attitudes. The real estate market along is ridiculous in this whole region. The cost of living drives people to have to run after money more than anything else. One big thing that people try to help sick people out with is perspective. There are a lot of people that are worse off than you. Yes there are, but we all have to deal with the cards that dealt us. And somehow it seems that when you get kicked once you better hold on because the second and third kick are on their way. Once you are on the ground, you are easier to kick, always remember that. When you have been sick and you have to deal with set backs and the building up of related problems you will get this. You also feel more sympathy for people in your situation or that are helpless like yourself. It is a humbling feeling to be the helpee and not the helper. Like the benefit that was held for me this year. I have dj’d countless charity events and benefits, and from the back side of that table you are always an arms length from the trouble, and when you unplug the unit, you can walk away from the problem. The people you are helping have that problem for life. When we had the benefit this year it was surreal for me. I was only comfortable thinking about the music to play or behind that table. I really didn’t even feel like it was for me in a way, it was one of those things that if I thought about why we were doing it, it sucked in reality. It was great to see all those people and friends, but weird and humbling for it to be about me. In a word, awkward. 1:47 PM Friday, August 29, 2003   So everyone wants to know I guess.. what did the doctor say. Well he messed up my plans. Here I spent all year re-focusing my life to be a short one. Well, according to the MRI scans for the time being we licked the thing. Now before you jump up and down on a molecular level we will never know what’s going on, and he still calls this thing a chronic condition. But in the position we are now, the chemo worked, and for now the monster is sleeping in my head again. How long we keep it at bay none of us know. And if it comes back we will definitely doing a stem cell transplant (makes chemo seem like Disney world). So my main doctor is moving to LA, I am still following up on my blood in Morristown I also have a doctor at NYU I am still seeing so I will see him on Oct. 2nd. So I still want to quit doctors but it doesn’t look like they are gonna let me. So all this writing and germ phobia has paid off I guess. Supposedly it can take up to 6 months for all my blood levels to get back to 100%. We will have to wait to see. The doctor suggested that I should be getting back to work soon, I told him, catch there, I have to find a job first. Accepting offers everyone! 1:47 PM Wednesday, August 27, 2003   So here’s the lay of the doctor hell week so far. Monday blood test, everything still ok. Tuesday I trek into the city with my last MRI in hand so I can get a new one to compare. I go into the MRI machine at NYU, a new one about 1.5 million, this one is just for head cases like me! I get the scan done, about 45 minutes in the tube. I go over to the doctors get weighed in, blood taken, see the doctor. Back in April I went to the ER after a crazy seizure, what do I bring the doctor? My cat scan from that trip and not the MRI from May. Keep in mind I have about 7 or 8 of these films all in the same type of big envelopes in 2 different places in my house. Half of them aren’t labeled. So call it dumb or an innocent mistake. I go to the city and only get one of 2 things done. So today Wednesday I go to Morristown get my blood worked up, I need another transfusion of platlets, and my white counts have crashed again. Now follow this Monday all was clear, Tuesday into the city accomplishing only ½ of what I needed, so I have to go back on Thursday, Wednesday I get my 5th transfusion and my whites crash. Tomorrow, Thursday I have to trek back to the city with my correct MRI film. And Friday I go back to Morristown to check my blood again. A 5 day marathon of doctors. Yours truly is thrilled. I am still in the process of waiting for Cobra and my insurance company to play catch up right now. In the mean time I am laying out some money until I get paid back from the insurance company. So far I needed about 150 for 2 prescriptions, not bad right. Well I had to tie up one credit card for the MRI to the tune of $2950. And tomorrow I tie up another one for a prescription I need to the tune of $3500. Now I know what you are saying, you get the money back, but it is still freaky to be laying out and holding these balances. One tip before you go on cobra renew as many prescriptions as you can. That way when there is that 3 week lapse you don’t have to play the lay out and wait to be repaid game! My dog bit my finger accidently last night and since I don’t have any white cells they gave me this crazy horse pill anti-biotic to fight any infection. In other recent news this past weekend I actually went out and had a life. Yes what you read is true. My friend wanted to go out to a Corvette show in Carlisle Pa. My blood numbers on Friday looked good, and one of the nurses convinced me to go. Of course 2 boys never plan ahead. So Friday night we are trying to find a room in a rinky dink town with ½ a million people in it. No go on the room so I stayed over his house and we drove out on Saturday morning. Now Carlisle is in the middle of Pa. about ½ hour from Gettysburg and 40 minutes from Harrisburg. It is out there. We get there about noon. We ate McDonalds. Yes I ate fast food! For a guy that has had to be germ phobic because of my white cells or lack of this is a major jump. Hit the fairgrounds, you have never seen soo many of one type of car in your life. No matter how much you love your car, you don’t compare to these people. The kicker is at the show was a guy that I see at the clinic in Morristown, I didn’t know until yesterday. But I ended up eating several different foods from fast food and restaurants. It was like I was cheating on myself. Unbelievable so I was hanging out this weekend, what a concept. Then it was back to the doctors this week, hell week. 8:13 PM Wednesday, August 20, 2003   Most of the time I do Monday, Wednesday, and Friday doctors appointments. Next week I have Mon, Wed, and Fri in Morristown for normal blood tests, then I also have Tuesday at NYU in the city. I go for an MRI to find out what we accomplished up there in the attic on Tuesday. I then have the doctor review it. Should be interesting supposedly some real information should come out of this. It can go either way. Good or bad, and then you have to factor in the time factor, good or bad for how long. So I really don’t know what to expect that’s why makes the big bucks. If I look at the head MRI it just looks like slices of ham to me. All I know that is for almost 4 years now I have this hole in my head, and I blame it for everything I do wrong, but no one believes me. Anything else let me see. No I really don’t know much, what do I think, we might have have stopped the growth I think that’s what the last one showed. Do I think I am cured. I am sorry did anyone hear of a cure for cancer? I think I have it in the genes or something. Hey would I like to hit the lottery and buy motorcycles and ride off into the sunset? Sure. What do I believe, well I am going to ride off into the sunset, where and when and by what means I don’t know. I don’t think about retirement that is for sure. I am sure the doctor will throw some numbers and stats out at me. Remember you are always a statistic, don’t fool yourself. If you don’t die in a car accident you are the percentage of people that don’t die that way. It is just being involved in dying statistics that really sucks. So by the latest some time next week I will update this with the results, if you get all my belongings in the mail, don’t ask you know the results, and don’t bitch about having to get dressed up, my friends will most likely end up in a bar and then you can spill drinks on your church clothes. 7:22 PM   So what is new… ok the morbid crap first… Monday I had my 3rd platlet transfusion. I went for blood work today. Whites are coming up a little (they have a tendency to come up and then go down again). Platlets held out from Monday’s transfusion. Red cells are going down. So today they took extra blood and typed and crossed me for a possible red blood cell transfusion on Friday. I also got a procrit shot today. The sick part is I knew my status before the numbers came out. I told the nurse exactly what I wrote above was what I was going to need today before she showed me the numbers from the print out. Damn I am getting good at this. Other news lets see, Mo and the dog are away for the weekend in Brooklyn. So it’s just me and the cats, if I keep food in their bowl, I will live comfortably. I have been feeling really tired from the red blood cells being depleted, so not a lot of energy, but I am writing a book on being lazy. If you know a great foot masseuse call me now. My legs and feet ache real bad, I don’t know if it’s tied into this crap or not. I saw one of those as seen on tv things where it was a food and leg massager thingy, I so almost called. Those things prey on marketing suckers. So tempting those ads because if you call right now we will give you both the left and right legs for the price of one! My meal recommendation right now: double cheeseburger and fresh ear of corn on the grill. I mean this corn was picked this morning and on my grill right now. That kicks ass. You got to work with me meals are the one thing that break up my day around here. So because of my layoff, I have to wait until cobra kicks in. You see it’s a twisted system. They wait until you are laid off and your benefits expire, then they send you the paper work. You send in the money they want, then they retro pay all your expenses. In the mean time bills bounce all over the place, because on paper I don’t exist to my insurance company right now. But in a few weeks I will. But here’s the catch. Try getting your drugs filled during this and you have to pay out of pocket and then the insurance company pays you back. No problem right? Well I hadn’t even thought about this catch until today I went to fill one of my injections, the pharmacy called me said we have a problem with my insurance. Keep in mind I am a regular at this place. I called them and said yes I am supposed to pay out of pocket right now and they pay me back. To which he replies do you know how much these drugs cost. Then it hit me these were the big money ones. Try 3700 bucks. For one prescription, yes you need to lay out $3,700, you are talking over $260 per injection. I called the doctor and I didn’t need to continue this medication so I am not renewing it. My message here is elect the cobra coverage ladies and gents. Hey everyone should check out a friends site www.serapheem.com you can even find pictures of my benefit, and some of my b-movie reviews. Serapheem, it’s better than spoiled milk, and just before the river of styx. 7:03 PM Tuesday, August 19, 2003   So I went 3 cycles with no accidents. Yesterday I was carelessly cutting some pepperoni and wham I cut my finger. I am such a hardcore patient I yelled out,”I Have no platlets.” Pretty pathetic like I was telling the knife you can’t cut me dammit. So yesterday I had gotten a blood test I had a platlet level of 7 (Monday I only had 1). A normal safe level is 144 – 400. So I had 2 transfusions this week, one was yesterday. I cut myself around 2pm, at 7 when I showered and took the bandage off, it started bleeding again like I just cut it. So I have had it wrapped up all night and keeping it dry and elevated most of the time I am assuming it eventually has to close right? I spoke with the doctor on call and nurses, I think I will survive this, if I could just buy some platlets. Typing is a pain in the ass it is my index finger on my left hand, and I am trying to avoid using the finger. But I knew my legions of fans would want this update now. My lesson to you, use cutting boards at all times. Friggin seagulls shut up I am not at the shore, thank you. 7:58 AM Tuesday, August 12, 2003   Here’s one for the positive thinker advocates. I was on a cancer website with some articles and this is taken from a doctors book: "The Tyranny of Positive Thinking," by Jimmie Holland, M.D., is adapted from the recent book, The Human Side of Cancer, Living with Hope, Coping with Uncertainty, by Holland and Sheldon Lewis. Dr. Holland is a physician/psychiatrist who has counseled people with cancer over the past 24 years at Memorial Sloan-Kettering Cancer Center, in New York City. So rule number one in coping is: "Don't believe you brought cancer on yourself." The research does not show that either personality or how you handle stress in your life raises risk of developing cancer. This is one of the myths that makes coping more difficult these days.. Rule number two is: "Don't believe that you have to have a positive attitude all the time and that sadness or worry will shorten your survival." This tyranny of positive thinking is also related to the "mind over matter" ideas of our society. It is unrealistic that as you cope with nausea, fatigue, and worry and sadness, that you can be positive all the time. Yet, zealous believers in positive thinking may make you feel guilty when you find yourself crying sometimes. There is no evidence that if you do become "down" at times, it affects your tumor. If you are surrounded by the "positive attitude police," tell them to get off your case and be realistic--and offer them The Human Side of Cancer to read to get the facts straight, separating facts from beliefs. So this is score number 1 for the guy who likes his dark moods!!! 12:39 PM Saturday, August 09, 2003   When I get an idea in my cracked up head, I obsess on it for days and days, sometimes weeks. It can be a bit hectic…No wonder I am so nutty. So what is my new obsession, idea? Now that the “light” is coming down the tunnel, I just want out. I want to walk away from this whole experience and all the bad crap from the past 3 ½ years. Start over. Now I know the doctors are no way going to give me a clean bill of health. Why would they do that? I proved them wrong before. I just want to kick the ass out of my life and gain control of all of it again. This whole year I have not had total control of my life. I have been unable to work, then denied my work, unable to drive, go out, eat out, eat fruits and vege’s, you name it I have been hospitalized twice. To the emergency room 2 or 3 times. I haven’t eaten Chinese food all year. Haven’t had a full beer or any wine since like November. I am on the wagon without ever signing up and no one has given me any chips. I lost some more marbles in surgery I am sure. I don’t think the doctor wants me driving until February. I want the control back dammit. I want to drive myself where ever and when ever I need to go. I hate asking people to help me in any way. Just the way I have always been. So I put a ton of things off unless it is convenient for someone else to help me, I do not like asking people to help me. Like even when I was in the hospital I always think that those nurse call buttons are for you when you like fall and can’t get up, I hate using them. Yeah yeah that’s what the nurses get paid for but I just hate the whole thing. So back to the starting over. I just want to run away from the whole thing. I guess I am trying to get away from myself the most. To get away from where I am who I am who I am not, where I am not. Times like this you just want to start over, walk out the door and take nothing but your junk with you. Well ok some of the junk you leave behind. Just pick up move somewhere else and hope to be safe. Somewhere where you find a cheers like bar right away, so you have several other lost souls to keep you company. OK you can find that anywhere probably. So yes at age 30 I want to run away from home, pick up my stuff, sell off the house and start over somewhere else. Where? I don’t know maybe that can be a contest where should Bob go? We can pick ideas from a hat. 5:09 PM Tuesday, August 05, 2003   So here we are a week out and you all want the wrap up for the final chemo round 4. As previously stated you all are friggin perverse. Tuesday went through pretty uneventful just feeling crappy, ate bearly anything. Between cycle 3 and 4 I lost 2 pounds, and trust me I do eat. Between Tuesday and Wednesday I lost another 2 pounds. Go figure? I think it had to be water weight I think I was pretty dehydrated on day 2, and day 3 and 4 for that matter that can make you feel terrible also. Wednesday night some drug I took kept me up all night I think. I laid there with my eyes closed but for some reason I just kept running over thoughts after thoughts after thoughts, you know the feeling? So Tuesday and Wednesday were in the city getting injected nothing too crazy at the doctors office at all you just sit there and take it. Thursday I was back home. Mid-day I had a little “event” remember these? Chemo week I seem to always throw a seizure or 2. They are worse than the eternal nausea. No big deal 45 seconds I guess not a biggie I just hate em. Well Thursday night into Friday morning, well actually Friday morning about 5 am. I had the second one. Nothing worse than being woken up by a seizure. I mean bring in a sad clown, a laughing hyena, anything just not a seizure. So this one maybe 90 seconds, at one point I touched my left hand and that started going too. When it was all over, I just wanted to roll over on my back. I couldn’t turn over. Try doing it with one hand. Mo was up and helped me roll over, when I rolled on my back she put my left arm down and she might as well as dropped a pillow, I could not feel my left arm at all, I yelled out don’t touch it. Basically when I was on my stomach the circulation probably got cut off, but still when you can’t lift, use of feel one whole arm, it sucks. Slowly but surely the feeling came back, and I took some medication, and well I was awake then. Since then things have been quiet just waiting out the nausea which is almost all but gone and increasing my meal size since. I do have occasional numbness in me left arm and leg, it feels like the last 3 fingers and the left part of my foot, have to look into this, but my surgeon told me I might have this. It tends to come and go, it is just annoying to loose some feeling in your body. Saturday night was weird I guess I was just tired, while lying in bead and watching junk TV, I had the feeling that I wasn’t getting enough oxygen. Like an out of breath feeling while I was laying around, no I am not that lazy. I guess I was just tired. I turned off the warm friendly glow of the TV and just went to sleep, hoping to get rid of the feeling. Well I woke up on Sunday morning the feeling was gone. Who knows? Nothing much else in my life. Just living my boring mostly alone life up here on the Hopatcong crazy mountain. Everyone wants to know whats next? Well tomorrow I start going to the doctors 3 days a week. This week Wednesday and Friday. Then I have to go Monday, Wednesday and Friday for about 6 weeks probably more. I predict a solid 2 month recuperation time for this last cycle, cycle 3 was 7 weeks. This is to monitor my blood levels by Friday my platlets and whites should be low. Maybe If I am lucky Friday will be my first transfusion of this cycle who knows? I predict 4 or 5 of those and maybe one red blood cell transfusion. I started self injections yesterday again, those will go for at least 2 weeks. Right in the belly. I only have one of the 2 drugs so I have to get a scrip for the 2nd one tomorrow. Here I am injecting my belly everyday, and no one even thinks that the shots really even make a difference. Would you take something if all the nurses and doctors say they don’t think it works? I don’t know I just do what they say, they say if it gives me another 5% chance why not do it. Because it is everyday in my belly! It isn’t that bad, gives me something to do, once the mail guy comes there is nothing else to look forward to around here. The latest prescription they gave me pre-loaded syringes, that takes ½ the junkie ritual of filling the syringe out of the ritual. Now I just take off the top and shoot up, no forplay of taking the drug out of the vial. That’s my immediate future and the rest? Well do I think this hell made a difference? I hope it did something other than wreck my life all year. How do I know, I think all the MRI’s look like slices of ham. The doctor could tell me my tumor was a ham bone and I would have to believe him. I don’t know. I am still disenfranchised with the fact that this whole thing came back in the first place, or second place / time, all how you look at it. I don’t worry about living to 100 or even 40 for that matter. I gotta do day to day, meal to meal, get basic. When will I be normal again? OK now you are asking stupid questions, that would mean the doctors messed up bigtime. I have a lot of crap ahead of me still, number one I don’t know if my body wants to torture me more. Number 2 I have no real life to get back to. I am in a big clean slate starting over point again. I would like to thank the management for being human and caring and intelligent enough to lay me off while out on disability. Really nice thing to do, may you be cut from work the same way one day!! Corporate America loves you! Remember when they know you are down they will kick you, cut you and poor on some alcohol so it continues to sting. I am NOT bitter! So that being said I have the job hunt coming up, that should be fun. Maybe I will sell the house drop out and work at a 7-11 in Indiana. Think about it with the stupid mark up of house prices here, I could sell, move there make 5 dollars and hour and own a house free and clear! Then all I have to do is pay taxes and die. Isn’t that what they say you have to do? Who knows. Fix me babe I’m a broken like that handle on your back door. Fix me babe I’m a broken like that screen on your back porch. Fix me babe I’ve been shattered like that coffee cup on that floor. 10:17 AM