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   Saturday, November 22, 2003   So what’s been new? Well this month so far 2 “events”. I had a smaller facial seizure about 2 weeks ago. You know that first drop on a roller coaster? The one you know is coming? Like you climb up and up, and then you look down and DROP. That’s the type of take off these things have. Except you don’t start a seizure on purpose, you put yourself on that rollercoaster. So after that climb you drop and then everything goes rushing by and you can’t stop and get off until the end, you just have to ride it out. Even if you are scared shitless, you can’t stop until the ride lets you. I personally like to flip the bird when the camera takes that picture of you that you see when you get off. Hey it makes me laugh and that is all that counts. Well the second “event” I had just this past Wednesday. And I usually know that I am due for one depending on my stress level (more stress= better chances, less sleep=better chances, and chemo that’s a given). I also usually have all these tiny little ticks like warning signals that I am due for a beating. So for the past 3 weeks I have randomly had a few ticks, usually facial, what’s it feel like? Like a jerk in your face that you didn’t do. So back to Wednesday we are driving back from the vet and BAM, I am looking down the first drop of the rollercoaster, and have been dropped. My face started ticking, tick tick tick, I am thinking to myself, “OK no big deal just a facial one. I am staring at the clock in the dashboard it is 3:11 pm. I thought great I can time this one. I remember just my left eye going bang bang bang by itself from right to left. It was pinning left bang bang bang (no pain but it felt like my eye was a bouncing ball going left left left). I remember thinking damn my eye is pinning real hard. I kept thinking no big deal this is just a facial it will be over quick. My tongue too was doing loopy loos in my mouth too. Like after the first drop the rollercoaster gets easier. Not the case on this trip. I thought it will end quick no big deal. I remember the dog was crying a little, I think he probably had to pee, it had nothing to do with me. I kept thinking ok stop now, no more, stop now. You know the OH SHIT feeling when after the big drop you go up a little down some more and bank left. Then I start to feel my left arm shake, but it is more like a vibrating feeling, and I am just waiting for it to go numb so I stop feeling it shake. You know that vibrating feeling from a wooden rollercoaster, bingo! That’s why I like steel coasters so much better. I like a smooth ride for my torture. This is like getting an even bigger drop in the middle of the ride, where you don’t expect it. Or when you realize now you have to ride the whole thing over again but backwards. Because now I know this thing isn’t over. The seizure is going to be a biggie. I am still awake for the whole thing, if I pass out, that is a worse signal, and I have to go to the hospital. So I want to stay awake, but I don’t want to live through it. I remember I was motioning with my right arm, but then even that I couldn’t do anymore. You know that feeling you get when the rollercoaster suddenly stops and you just slowly pull back up to the gate. Like, WOW OH SHIT. That’s the type of feeling at the end. It slows down to an almost stop and then I know it is over. I can’t talk at the end I am wacked out. I feel about ½ of my body. I can’t feel my left side at all arm or leg. I feel virtually paralyzed at this point, I slowly start to regain my speech. I am a little disoriented. But I just have to wait for feeling to come back. So you know how that long rollercoaster is only like 60 seconds of a ride. Same deal here. You wait through all these warning ticks (like waiting on that line) you jump on the ride (start the seizure) and it’s over before you can stop being scared. Except I think a seizure is scarier, I actually like going upside down on rollercoasters, I hate these seizures. Screw Six Flags. I have seizures (and it doesn’t cost me parking, park admission, the piece of my car the monkee’s stole in the drive through safari, overpriced food and drinks and a souvenir.) So we get home about 5 minutes later, and now I have to try to get out of the car. My left side is really dragging and I still don’t have much function or feeling in my left arm. I tried walking up the stairs normal and my left leg kept dragging so I tripped up like 3 stairs so then I realized that I had to step up with my right leg first. I couldn’t judge the steps with my left leg it was dragging. I got inside and sat down a little while. I tried using the computer, but my left hand just laid there lifeless. And my right had was a bit tired too. My eyes were tired. I had to stop it was too frustrating trying to do something and my eyes being tired and my left hand wasn’t even moving. How was your Wednesday? Ok you lasted this far how about a shameless EBAY plug for me? http://members.ebay.com/aboutme/draculabear/ Later. 8:42 PM Tuesday, November 18, 2003   11/18/03 So this past weekend I went to just outside D.C. with my parents to see my brother and his new wife. We got to tour around D.C. a little on Sunday we didn’t go into any of the buildings / museums but basically drove around a bunch and walked all the important monuments. Wouldn’t you know it we are standing on the steps of the Lincoln memorial and the president and his 3 choppers come up out of the white house and circle around us and fly off. So I am safely admitting to seeing the president now. Well it’s the closest I will ever come to meeting him. It was almost surreal to see some buildings that you really only know from some dusty classroom history or from the back of money. We should all have to visit the capital when we are young to see how massive it is. But then again we wouldn’t appreciate it then anyway. Certain things people my age will never understand. The way wars used to affect us in this country is one of them. I think the closest thing we can compare to the country wide passion for things is 9/11. That seems to have brought about an impact close to Pearl Harbor. Even the Korean war, no one now knows about that. And the turmoil that society went through with the Vietnam war we will never know. Nevertheless my father was drafted into the war and went over in 1968. It is not something that we talk about over meals. My father did what he had to do. The government called him and he went in and fought for us. Was my father the most famous soldier to go and come back. To most people no. To me he was. Think about it I wasn’t born until 1973. If he didn’t come back, I wouldn’t be writing to you now (I know you are on a long journey to get to my point here). Like I said we don’t really talk about what happened there, it was a time that my father faced up to a responsibility and lived through a lifetime of experience in one year. My father was a hero in that war, and managed to come back and have a successful life her in America. A country he fought for, and he succeeded. He was a hero in combat and life. And for that my dad will always be my hero. I bring this all up because this weekend we were walking around D.C. and went to the Vietnam Veterans Memorial. I think my father has always wanted to go. In some sense there is a piece of his life on that wall also. I had mixed feelings about it. I had pride for what my father had done, I felt terrible for what he had to live through also. Things I will never know about, and he has kept inside for over 30 years, and will always live with. We walked the wall and then came out one end where there were the books where they list the names on the wall. My father was going to look up a couple people then turned away. I felt horrible and went and hugged him and told him I was sorry, thanks for coming home. Think about your own family and the past they have and never forget to thank them for doing it for you. Who knows they might be your hero also. Just like my dad’s mine. 7:44 PM Friday, November 07, 2003   So tomorrow I sell my car. How do I feel about this? My wallet is very happy to not be spending money on a car I can’t drive. What’s the Countdown to driving now? It’s still 6 more months I had a facial seizure this past Wednesday. I thought the irony would be now that I sold it I wouldn’t have anymore. Doubt it. How do I really feel about selling my car? It sucks. I dig my car. For those that don’t know, 2000 Black Mustang. I think the car is killer, not in a snowstorm mind you. In the snow that car will leave you high and stuck. Don’t let me fool you, but for getting up and going on a nice day, the car is a kick ass ride. We had some times. That’s the car I bought when the doctor said I could finally drive after my 6 month waiting period after my first brain tumor. I couldn’t afford much, but wanted a cool car. I used to dig that car out in the snow, even though I didn’t drive it last winter. I would still dig it out. I guess it was part denial, part I don’t know. But selling the car finally is like admitting to this thing in my life. It’s letting it win dammit. I am doing the right thing. I can’t drive when I don’t know if I will have a seizure and hurt anyone. But it is going to be a reality that this thing has taken that away from me to. I think part of the time when you are faced with this crap, survival is denial. Yeah you also have to deal with it. Hey I did my time in dealing with it all year. I wonder what the hell next year has in store for me? But I got 2 more months of surprise’s left in this year yet. My doctor said that my scans looked better again. So there doesn’t seem to be anything worse. At best my MRI showed some improvement in my head he said. There is nothing to show anything that is indicative of tumor activity. They can not see anything on a cellular level of course. What your cells are doing is always your own business. So for now things are stable. Hey I worked for this stability. It’s the rest of my life I keep in chaos and disorder. My platlets have been lower again. They have seesawed a bit in the last couple months. They were up then dropped again. Nothing is wrong with this it is just the platlets are the last thing to recover and nothing I can take to make my bone marrow recover. Once they recover I am due to go on a low dosage chemo maintenance program. The theory is to just give me a little toxic stuff to help keep the crap from growing back. It’s a weird feeling going back into the doctor’s office where I had my transfusions. I mean the people there are incredible. Really nice, one of those places where you know it is a job for these people but they must also really like working with the people that they see day and day out. But I do not miss going there at all. Especially in Morristown I am the youngest guy being treated there I mean by a good 30 years plus a lot of times. I mean that’s not to say that the people being treated there aren’t nice people, it’s just I feel way out of place. Makes you jaded to have to be the one in there like I should have had another 30 years to not to have to deal with this. I should be working my butt off now and trying to make a dent in my life. But I am on hold. I guess a lot of us are on hold just in different ways. Some out of work, some in work, some sick, others just can’t get out of their own way. Quitcherbitchin. To continue the old war story: with anesthesia it is like a hit and miss practice in a way. Everyone seems to react differently. So one of my side effects I had was muscle fatigue. So the only activity I had in bed was eating. The thrill of the day is filling out those hospital menus. Choose between cardboard and cheese and apple acid juice, old lettuce salad, you know the type of choices or maybe you don’t. If you know someone in the hospital and they are not on a restrictive diet bring them outside food. Do it now. I will wait here, I am serious, I am not joking…. So back to the muscle fatigue here’s how it felt. I would eat one spoonful of that hospital jello, and once I got one spoonful to my mouth my arm would be burning like the last set in a crazy weightlifting session. You know that burn when you can’t do one more, but for me it was just resting between spoonfuls. So when the anesthesiologist came to talk to me. I told him to do away with the 3 day muscle burn. They did for the second operation. So I went through the burning you know what, the burning arms, I did the brain mapping. No new seizures the whole week just like I told them. I was in the room with 3 other people, most of them had some sort of seizure problem. Towards the end of the week there was a girl from Japan in there I think. They would let her get up and walk around, even get up and go the bathroom on her own, the trouble was the poor girl would have random seizures all the time. Here I was using the damn pee jar thing, not having seizures, and this girl was allowed up and around I was a bit jealous. And I was scared for her safety, she should have stayed in bed. I worked the system a bit though. They have this chair bathroom thing for the number 2 events (are you with me here). I was not going to do that in bed. So I waited until I got the nighttime round doctor came around, I figured he was an easy mark, and I asked him if I could use that chair thing, and he said yes. I was on my way. So I will skip the old people magazine they gave to me, and how I sat on the chair behind my private curtain, there are no more details, so I will skip the rest. I made friends with a woman diagonal from me Debbie, we still send Christmas cards, good people. No one in the world would operate on her. Dr. Doyle my surgeon was willing and believed he could help her. And he did dammit! She has been doing better ever since her operation. There were a few other people through the room also while I was there. But the nurses and doctors were all great. If you can just hide out there and not get cut up, the people are great. So anyway back to some gore. I had to wait out the week until Monday the 25th for my operation. I made it through the weekend with visitors, and bad food. Then the 25th came. They wheeled me and my wires down to the operating room. My surgeon came to see me before the operation to see if I was ready. If I said no, what would happen? The guy had a piece of my skull on ice. So he asked if I had any questions. I said yes, what if while we are in there you realize you have the wrong person’s skull bone? He said well then we will send someone out quick to get yours then. I felt better after he told me this and I was ready to go. Go figure? So I don’t remember anything really for a while. I woke up with another catheter feeling crappy. Real crappy, the catheter is 75% of the discomfort. Now picture this I am laying there post-op all uncomfortable, rolling on my side to drain the dragon, my dad gets up and walks out of the room. He goes, I am going to the bathroom. So I said shut up show off. So I was just waiting around asking for pain med’s, I was on perkiset (sp?) for the whole last week. They were my wonder drug. And the hospital’s theory is not to put you on a regular dosage, but if you feel uncomfortable just ask and you shall receive. So by this time after my 2nd operation I was popping these things for like 8 days. I think they started to lose their punch when I asked when I could have more and they said a couple hours. So I just decided to suck it up and deal with what pain I had left. This was on Monday, Tuesday they had to take me down for a post operation MRI. So first they wanted to take out my catheter. Well you knew I wasn’t going to take this lying down. But I took it lying down kicking and squirming. The nurses didn’t know what the hell my problem was. I was bugging. I my defense the steroids they give you to help keep any swelling down, make a guy feel like he is PMSing. Men are not built to feel this way all wacky and emotional. So these 2 nurses come in for a standard tune up on me. One has to take out my artery line in my left wrist. The other has to pull out the zip cord on my ding a ling (I don’t think I ever saw them after this again). I was crawling up the bed bugging. The lady promised me it wouldn’t hurt, and I was squirming. The other nurse pulled out my artery line and I had blood squirting everywhere, (Mr. Kodak where were you?) And you thought the Paris Hilton video was supposed to be hot. This was me with 3 women!!! So my surgeons nurse practitioner happened to be around (lucky her). Heard the ruckus and came in. When it was all said and done, it wasn’t bad. She asked if I wanted to put off the MRI I said no I will go. She wanted to give me a valium to help me calm down. So then I started arguing with her that I didn’t like taking anything and didn’t want to start a habit? HUH? I don’t know where I got that from, so she said it isn’t habitual it is medicinal so I took it. Needless to say by the time it kicked in I was so happy to be in the hospital. I was telling people around me that this was a great place to be. Meanwhile my head is wrapped in a gauze turban. I look like a wounded soldier. The MRI tech said that they should have given me the valium before the ripped it out. Where was he when I was exposed? To be continued Sometimes It Snows In April Tracy died soon after a long fought civil war, Just after I’d wiped away his last tear I guess he’s better off than he was before, A whole lot better off than the fools he left here I used 2 cry 4 tracy because he was my only friend Those kind of cars don’t pass u every day I used 2 cry 4 tracy because I wanted to see him again, But sometimes sometimes life ain’t always the way... Sometimes it snows in april Sometimes I feel so bad, so bad Sometimes I wish life was never ending, And all good things, they say, never last Springtime was always my favorite time of year, A time 4 lovers holding hands in the rain Now springtime only reminds me of tracy’s tears Always cry 4 love, never cry 4 pain He used 2 say so strong unafraid to die Unafraid of the death that left me hypnotized No, staring at his picture I realized No one could cry the way my tracy cried Sometimes it snows in april Sometimes I feel so bad Sometimes, sometimes I wish that life was never ending, And all good things, they say, never last I often dream of heaven and I know that tracy’s there I know that he has found another friend Maybe he’s found the answer 2 all the april snow Maybe one day I’ll see my tracy again Sometimes it snows in april Sometimes I feel so bad, so bad Sometimes I wish that life was never ending, But all good things, they say, never last All good things that say, never last And love, it isn’t love until it’s past 9:59 PM Saturday, November 01, 2003   I had to start getting the funds together to pay off my car today. Monday I will go and fed-ex ford motor credit what I owe them. Then I will get the title back and then my baby-doll (my car) will be gone. I dig that car. I got to see my nieces for the first time in like about 11 months today that was nice. They beat the hell out of me, but what good is an uncle unless you can climb on his back sit in his lap, play monster all that stuff. I feel bad I don’t do more for them. But I am going to excuse this year, I was busy. Hey I use that excuse for everything else this year. So when I was at the doctors Thursday. I told him that there are some nights I literally watch the clock, every ½ hour 11:00, 11:30,12:00,12:30,1:00,1:30,2:00, 2:30, 3:00 (and I start thinking, ok I only have to lay here like 4 more hours.) Most of the time I am tired enough to fall asleep, but some nights, I just don’t, and it wipes my whole next day. Plus being tired, run-down, stressed are all great ingredients for seizures. So he prescribed something for me to take on the nights that I can’t sleep. He wrote on the prescription for insomnia. It is almost weird, I mean that is what I told the doctor I had, but I would never have called it that. I guess I am in denial about my conditions I don’t know. But when a doctor throws conditions at you or names your problems it seems a bit shocking I guess. I mean hear I am discussing a few odd nights a month and I have been through 3 brain surgeries, if that didn’t shock me what will? All in all the last brain surgery I had was a cakewalk. I recommend it to everyone. It’s chemo everyone should avoid. At all costs! So to continue my old war stories here we go. So last time we left I was getting all prepped by my new doctors on my brain surgery, and how it was going to be a 2 part operation. See the a couple posts ago if you are not up to snuff. So on Monday October 18th 1999 I went to the table. They wheeled me down to the table and opened me up. I woke up post op, pretty uncomfortable. I now had like 20 wires sticking out of my head. Before I left post op they pull your catheter out. Now here’s the problem. I got a nurse that does NOT want to be there that day. And maybe she has men issues. I don’t know. For those of you that have had a nice life without ever experiencing a catheter I will explain. They put you under then put a tube down your jimmy, when it is in there they blow up a balloon that sits in your bladder this helps to make some pressure so the pee comes out the tube. OK enough about that. Back to the monster, I believe to this day she did not deflate the balloon enough and pulled out this balloon out of my you know what (Every man can say OWWW right now). Exactly I was in pain for 3 days. As if the whole vacation wasn’t enough fun already, they injure my you know what. So I was now moved out of my private room and into a room with 3 other patients. The set up is a patient in each corner of the room. It is a pretty big room, so you all have your space, plus don’t forget we have divider curtains for our privacy when we need it. But in this room we have 2 nurses on duty 24 hours a day. Not the same ones they come and go in 8 hour shifts. But always 2 nurses in the room just for us. Plus my head is hooked up to a machine with these 20 or so wires. And a video camera is on my 24 hours a day that is running video tape on me. You see as they rolled me back to this new room they told me they were hoping I would have a seizure. This way all these machines could record it. I told them flat out, well unfortunately you are not going to get your data because I am not going to have another one of those. Aries we are stubborn, but I didn’t have another one in the hospital. One thing I skipped over for the squimish after the surgery they also had a drain tube out the back of my head held in by a staple, this was to drain off excess blood, nice. But anyway let’s get to this grid I keep talking about. The whole point is to stimulate it so they can map the outside of your brain. Great this should be fun. So the big day for mapping comes, they tell me this usually will stimulate a seizure, but it isn’t a real one since this guy will be stimulating it. And just let them know when it happens they will hit me with some drugs to calm it right in my vein, ah modern medicine. I wish I could carry this needle with me daily, except, could you imagine trying to inject while seizing, ok skip the needle. Early in the day they hit me up with some dope to mellow my noodle out for this test. Then this guy comes in with what looks like a 1970’s stereo amp, you know the look, silver front with big dials and some wires that he strategically hooks up to wires that run to the map in my head. This all applies to this rough picture on paper. The deal is he sends in little electrical impulses to see what will happen. This is painless, remember the brain feels no pain. Unless of course an impulse hits my brain sac which I might feel a burn. So he starts the test. This should be your left hand and my left hand raises. This should be your tongue and my tongue wags. Left thumb. Etc. When he gets to my eye I think, he trigured the seizure, so I yell out seizure. The nurse comes over hits me in the vein. Seizure ends. Now I am high as a kite. Now you are talking about a guy who the only drug he did was drink. So now you are hitting me with heavy narcotics. So now the hallucinations start. Something totally new to me. You know those metal poles that are all over hospitals that they use to hang bags off of to feed you crap. I watched one of those bend in half. And the right side of my bed I just knew that I couldn’t look there because there was this rotten decaying green, yellow and black torso corpse. So I didn’t look to the right of the bed. The guy doing the test had black hair of his hand and fingers, and he held out his hand and I saw the hair fall off of his finger. FREAKY! Later that night I saw a moth fall from the ceiling and go down my girlfriends shirt. Psst, it was never there. Heavy stuff. I even asked them is there any way you can take the edge off? They said um, no. So is this what people feel like when they are stoned, well our stuff is a little more pure. The whole test wasn’t that long and I was so wasted I just wanted it over. But imagine some guy sending low voltage to your head and making your body do things you didn’t ask it to do. So more drama was in store for me, I was supposed to go in for mapping surgery Monday and removal surgery on Thursday. But they were mad I didn’t have a seizure on film and with the wires in my head so they pushed my surgery to Monday. I was one pissed puppy needless to say. My surgeon found out I was mad, and stopped by to visit me. He said the team of doctors really wanted to wait longer, and it wasn’t him. Dr. Doyle was as Rock N Roll as a doctor could be, the guy is a brain surgeon, but don’t let it fool you. He is all about Rock N Roll, Very cool guy and wanted me to be comfortable the whole time and offered to roll it to Sunday if he could, I said Sunday or Monday really didn’t make a difference, and on Monday he would have his “A” team of doctors with him. So Monday the 25th it was. To be continued…. 8:29 PM