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, March 31, 2005   3/31/05 Today I worked my left hand out for like an hour. I am trying to build up the fingertip dexterity. I also have an in-home nurse visit at 5 pm, and pot roast ready to go for dinner for Heather and I. The story continue’s Now Sunday I was still in Neuro-ICU, It turned out to be family visiting day for me. I had my father, mother, sister, brother (who drove up 4 ½ hours to see me), and Heather of course. Well my sister originally wasn’t going to come because she is pregnant, and she didn’t want to be around a building with x-rays. I know what you are thinking that don’t all pregnant women end up in hospitals anyway? Well if I learned one thing in life you don’t question a woman with that many hormones running through her body. But when it was known Dennis was making the drive she jumped on the convoy to visit the head case. So refer back to the super dosing of steroids i.e. crying juice I am on so when the family train got there the water shed began. I was especially toughed because my brother was in the middle of moving to Florida and still made the time to drive up. It meant a lot to me. His wife is an occupational therapist, and when she heard about my hand she was ready to jump on a plane with my nephew Matthew to come help me. Well like I said about Saturday not a lot went on on Saturday and Sunday, so it was mostly a very hoarse me talking with the family while round doctors stopped in a couple times and nurses came and went. The ironic part was, now being all wired up I was relegated to bed rest, with a guy up to x-ray my chest so I hoarse whisper out get the pregnant woman out, and he kicked everyone out (the one thing my sister feared). Then after my snap shot everyone filtered back in. My arm was still useless on this day, and I was holding out hope that after my surgery it would be a little better. 4:18 PM Wednesday, March 30, 2005   No Brah, I didn't try to stick a fridge magnet to my staples before they removed them, but if the suggestion eas submitted earlier I would have. How great would that have been to have an Elvis magnet hanging off my skull. I could have charged for the advertising space. The ad would have been great, “One newly remodeled empty head with ad-space for 2 weeks, contact Bob”…….. 5:21 PM   3/30/05 Today I met with my physical and occupational therapists at my house. Next episode from the hospital…… Saturday we are up to at this point. Visitors, mom, dad, Heather (they all came in together) and the on call doctors. All meals were delivered still in neuro-intensive care pretty uneventful. Except every “event” I pushed the button on the computer that was monitoring me. Plenty of steroids and anti0biotics flowing into my veins. The weekends are a little quiet around there. I did get my catheter out though. Hey you want the details, and I think one line out of my arm. 5:09 PM Tuesday, March 29, 2005   3/29/05 Went to the city today to get my staples out and let me tell you my head feels so much better. Tomorrow I meet my in-home occupational therapist who will hopefully help with some more hand exercises. Not much else to report other than being tired at 11 pm. 10:56 PM Monday, March 28, 2005   3/28/05 So I guess we can pick up with the first operation. 3 shots of morphine that night alone. They brought me up to neuro-intensive care. There they hooked up the lines that were coming out of my head to a monitoring computer. You see that was why they did the 2 operations in the first place. The first operation they put this flat grid with wires that come out and little depth “fingers” that go into that area of the brain. One of these little fingers gave me the hemorrhage. The risk was 1% and I hit it. So I am hooked up by like 20 wires to a computer with a video camera watching me 24/7. This way they can collect data on me and do brain mapping on me (more on this later). The goal here is to find out where my seizure activity is coming from. Oh real quick back to Morphine, people do this by choice? What the hell is wrong with you? My first recollection of hallucinations was dreaming of soldier medals crushing in the woods. Now the book I was reading before I went in was Black Hawk Down, but they weren’t fighting in the woods. So morning comes and I am up early, my surgeon stopped by at 5am to see me. So here I am with 3 lines in my arms, a catheter, 20 wires out my head, a blood drainage line coming out the back right of my head. A blood pressure cuff that goes off on regular intervals. They are pumping me with drugs to fight swelling in my head (steroids). And anti-biotics. I call the steroids my crying juice, because they are the closest I am told a boy can get to PMS. So I finally get breakfast, now this is early Friday morning and I haven’t eaten Since Tuesday night. They put me on liquids, so juice and jello. But before I can finish this ½ cup of jello, my day nurse comes in and takes it away (reason #1 they don’t let you have a bedside gun). I get un hooked from the machine and brought down for another cat scan. Apparently there was some confusion from another surgeon thinking I might have to go back on the table on Friday (nobody from my team). So they scan me and now I go back to my room. Another woman came in to re-hook me up, and while she was doing so and before she could finish, my bad arm had another seizure, and I was bummed because we didn’t get the data. So I ask the nurse when is lunch? She tells me 2 pm and I am off the liquid diet now. So at like 230 now I am hungry. I call her asking when lunch is she says 1pm. So I am like I never got lunch and need food. So this nurse was not helping at all. Reminder I am in Neuro-intensive care, help a brother out. So my father gets a hold of someone from my surgical team who calls over and hands the nurse her head. You don’t mess with my surgeon’s patients, and then she came over and told her again. So at 330 our hero gets his lunch (yes you are thinking right dinner is like 530). But I tore that food up. Well someone helped me I only had one working paw at this time. Friday I was still in a fog from the drugs all day. I wasn’t in pain inasmuch uncomfortable with a big compression dressing squeezing my head like a juicer. So mom, dad, and Heather stayed with me all day to keep me company. I wasn’t the best entertainer, but it was great to have their support. The worst part of the stay, is when your guests leave and before someone shows up the next day. There are no meals to break up the night, you do a lot of thinking. Oh and get this one the first surgery made my voice very hoarse, so me of all people couldn’t be heard across a room. My ex would have paid for that. So dinner came uneventful, on time. But before that nurse left for the night, she came in and handed me a bunch of med’s that I had to bring into the hospital, and they were supposed to dispense back to me, so now I was responsible for one of my own medications. Needless to say that nurse never got me again and that night I had the head nurse. More to come. 4:44 PM   3/28/05 So I guess we can pick up with the first operation. 3 shots of morphine that night alone. They brought me up to neuro-intensive care. There they hooked up the lines that were coming out of my head to a monitoring computer. You see that was why they did the 2 operations in the first place. The first operation they put this flat grid with wires that come out and little depth “fingers” that go into that area of the brain. One of these little fingers gave me the hemorrhage. The risk was 1% and I hit it. So I am hooked up by like 20 wires to a computer with a video camera watching me 24/7. This way they can collect data on me and do brain mapping on me (more on this later). The goal here is to find out where my seizure activity is coming from. Oh real quick back to Morphine, people do this by choice? What the hell is wrong with you? My first recollection of hallucinations was dreaming of soldier medals crushing in the woods. Now the book I was reading before I went in was Black Hawk Down, but they weren’t fighting in the woods. So morning comes and I am up early, my surgeon stopped by at 5am to see me. So here I am with 3 lines in my arms, a catheter, 20 wires out my head, a blood drainage line coming out the back right of my head. A blood pressure cuff that goes off on regular intervals. They are pumping me with drugs to fight swelling in my head (steroids). And anti-biotics. I call the steroids my crying juice, because they are the closest I am told a boy can get to PMS. So I finally get breakfast, now this is early Friday morning and I haven’t eaten Since Tuesday night. They put me on liquids, so juice and jello. But before I can finish this ½ cup of jello, my day nurse comes in and takes it away (reason #1 they don’t let you have a bedside gun). I get un hooked from the machine and brought down for another cat scan. Apparently there was some confusion from another surgeon thinking I might have to go back on the table on Friday (nobody from my team). So they scan me and now I go back to my room. Another woman came in to re-hook me up, and while she was doing so and before she could finish, my bad arm had another seizure, and I was bummed because we didn’t get the data. So I ask the nurse when is lunch? She tells me 2 pm and I am off the liquid diet now. So at like 230 now I am hungry. I call her asking when lunch is she says 1pm. So I am like I never got lunch and need food. So this nurse was not helping at all. Reminder I am in Neuro-intensive care, help a brother out. So my father gets a hold of someone from my surgical team who calls over and hands the nurse her head. You don’t mess with my surgeon’s patients, and then she came over and told her again. So at 330 our hero gets his lunch (yes you are thinking right dinner is like 530). But I tore that food up. Well someone helped me I only had one working paw at this time. Friday I was still in a fog from the drugs all day. I wasn’t in pain inasmuch uncomfortable with a big compression dressing squeezing my head like a juicer. So mom, dad, and Heather stayed with me all day to keep me company. I wasn’t the best entertainer, but it was great to have their support. The worst part of the stay, is when your guests leave and before someone shows up the next day. There are no meals to break up the night, you do a lot of thinking. Oh and get this one the first surgery made my voice very hoarse, so me of all people couldn’t be heard across a room. My ex would have paid for that. So dinner came uneventful, on time. But before that nurse left for the night, she came in and handed me a bunch of med’s that I had to bring into the hospital, and they were supposed to dispense back to me, so now I was responsible for one of my own medications. Needless to say that nurse never got me again and that night I had the head nurse. More to come. 4:44 PM   This was a post I had in my palm from the hospital in my palm and am just getting it up now. 3/20/05 Laying here at 1:30 am on my 9th annversarywith Heather in a hospital. And I feel like they gave me an old mans brain. Im aso happy to be here counting my blessings. Family,friends,all the staff. Heather alone has been a source of focus of healinng. I am one lucky guy right now. Now there were some real downtrodden moments while being in here, but most of those will sneak in while you are physically hurting, alone and all that jazz, so you always need that one thing or two to keep you focused on getting past that. Be it faith friends,staff,eat people support like high octane fuel. If you don'thave the energy to make it yourself. Have a carrot on a stick, one thing you want so bad to do before you check out, that you can't go out before you do it. I got two things. One innocent, one a commitment.1, Somewhere maybe not even born yet, is a puppy waiting for me. 2, I can't punch my ticket and make Heather sad. We have grown so close that this can't stand in the way of us. Now I already have Heather in my world so that puppy is second, though mentioned first. Trust me while housebreaking Heather will always be first. The most important things in your life are within arms reach, for a hug. A lot have been there for years and we walk right by them. This is what makes you rich. Your most expensive gadget is bitter from when it was manufactured and became obsolete. 12:10 PM Thursday, March 24, 2005   3/24/04 Food / rest/ and hand exercise. That's my days now, not complaining at all, just gotta listen to the machine. Improvements again today walking although slow is back. my hand is still weak but feeling normal, and clumsy. Next week I plan on getting back to the gore, I have been scribbling notes of details as they come to me from that drug fog. 2:06 PM Wednesday, March 23, 2005   3/23/05 My hand is getting better by the day. I am a little tired today had to nap. I will probably pick up the gorey details next week when I get home home. It's just good to be out of the hospital and in a comfy home. It is actually working out better for my recovery here I get my hand to start turning door knobs and stuff. Great lunch and dinner yesterday with Heather and 2 friends and their daughter. Great stuff, it is snowing like December outside, please it's March, go away, or we are all moving to Florida. Friday I see my house again. First time since going in, it may be little, but it's my little place. Ya always miss home. 4:47 PM Tuesday, March 22, 2005   I know I have to get started with the train wreck details asap, so I will start from surgery 1 through recovery, not all at once. I had the afternoon table time, but that didn't stop people that didn't know that from ringing my phone early and waking me up (big surgery etiquete (spp?) DON'T DO THIS). Get up shower shave etc, in a light fog. Go to the city. Fill out a form, get ushered back to a holding cell. Of course the case before me is running late. Did I forget to mention the huge power breakfast. No of course I didn't because you can't eat before hand (I was missing my food + anxiety + staring at 3 (Heather, Dad, and Mom's scared S-less faces). Me I am almost as upset about the no food thing. So I kept trying to get Valium for them, and a big diner omelete with the trimmings for me. Then hell let's just turn around while we're all still happy. So my 1 pm time turns into like a 3pm time. Still no omelete or Valium. My surgeon came back, talked to us about the plans, again, I don't get into my flight or fight mode until they make me walk into the back. But the 3 valium needy people are peeking at this point. So I leave under their duress, again I am sleeping through this thing. They march me into the back, now fight or flight. Into the cold op. room. People wires tools everywhere, now I DON'T want to be here. Up on the table, one line in my arm. Happy juice a-coming. I am out until about 10 /11 pm, I dunno. I wake up with my surgeon over me it's over, but there is some chaos, and I am in pain, my head dressing and where they cut which now has like 20 wires coming out of my head. They wack me with some morphine, and now I am being moved, all in a complete daze. I go out for a cat scan. Sure move me around great. Now I am back again, I don't know where, and they bring in the valium 3, I know I am amess with O2 being fed through my nose, and at some foggy time I realize when being asked maybe pre-scan, I can't move my left hand / arm ( I remembered recently in my post-op fog my arm seized up real bad at this time, telling the dr's something was wrong, and then it was weak). So the chaos all stemed from that 1% hemmorage risk and I hit it. This was just the risk of the procedure, nothing to do with my surgeon. So I am still groaning in pain, crying from seeing my family twice. I get more morphine and am moved to Neuro ICU for the night. During which I get monitored constantly and wacked again with Morhine. Needless to say I was sleeping it off. At some point I wake up to see my surgeon standing over me it was now 5 am, he didn't go home until probably aftert 1 was with the Valium 3 until midnight. So that is the first leg more to come, but there were some foggy druged times, that are a blur. 10:24 AM   3/22/05 My horoscope today!!! You show-off! Of course, if anyone has the right to gloat right now, it's you. You've been awarded a special gift -- the gift of immediate attraction. Pass it around carefully. It's tough to turn off. 8:11 AM   Tuesday March 22 7:30 am I'm back. Heather, my tough little angel, had to live through it with me, and keep my supporters abreast. So yesterday I got released, and I am spending the week at my father's resting. Friday I go home to my house. 1. Thank you to EVERYONE for their thoughts and prayers, my family, Heather and friends and dr's are what got me through this phsically and mentally. I need a little time away from it right now, and then I promise full dusclosure on as much as I can remember (narcotics are evil). I still have recovery from this procedure which is a focus now, more treatment on the horizon, but, I am not even thinking about that yet. I feel better everytime I wake up in the morning. At night I am run down. I am so lucky to have such great support around me, it's like I ran the race and everyone else did the running, I just stood there. But I am the most tired at the finish line. I will be posting more soon, and trying to touch base with you all over the next 2 weeks. But I really want to get the gory details up here so, for me I don't have to relive it so much. Thank you all more than you'll ever know. Bob (I do this really all for the attention!) 7:07 AM Wednesday, March 16, 2005   hi all. everything went ok on tue. he should be getting out on sun, which is great news. and we'll all very happy that he is doing ok. other then that there is nothing else to report. talk to you all soon.. 8:41 PM Sunday, March 13, 2005   He's doing ok. The next surgary is still on for this tue. And hopefully he's be out the following week. He's in good spirits. He voice is hurts from the tube. So talking is a little hard for him right now. Imagine that, a quite bob. But thats ok. He's getting better and thats all that matters. We'll sorry to keep this so short, but I'm on my way to go and see him. More on him later in the day.. 9:28 AM Friday, March 11, 2005   Hi, just got home from the hospital. He's is doing alot better then last night when we saw him. He is just really tired and drained today. With no voice I might add. But he still managed to talk and make jokes to everyone. So when he is doing that we know he is ok. The doctor is saying the will do the next surgary on tue. Which is good. But other then that there is really nothing new to report. He's ok though and in good spirts which is the good part, that I'm tahnkfull for. More for you all tommrow. Bye all.. 10:13 PM   Hi everyone. This is Heather, I'm just letting you all know how he's is doing. He was in suragry for quite a while. Bob went into surgary around a quater to 4. He got out of surgary at 9:30. The doctor came down and told us everything went ok, the reason it took so long was beasue they had to cut through alot of scar tissue. We went up to see him arounfd 10:00, he was in alot of pain. The doctor sent him for another mri, just to make sure he was ok. He said everything looked ok. They shot up with full of morphine, to help with the pain. Then we said our goodbyes. Were going back today so I'll let you know how everything is. Thank you all for your support and thoughts. It really means alot to us.. Thank you again.. 7:36 AM Wednesday, March 09, 2005   3/9/05 OK here's my last post before I go in Heather will be updating this with my status. This is a mixed posting with a bunch of quotes, a brief Bob's brains history, and a piece of scripture. These 1st 2 are for Heather the rest are craziness. Well never fear I will be back with plenty more to say here. Thanks for your thoughts, prayers, and the time you take to read this stuff. My heads in a pretty good place from all the support from everyone and is in one piece, and in a couple weeks it will be again. See you on the other side. Sade Lover's Rock I am in the wilderness You are in the music In the man's car next to me Somewhere in my sadness I know I won't fall apart completely When I need to be rescued And I need a place to swim I have a rock to cling to in the storm When no one can hear me calling I have you I can sing to And in all thisAnd in all my life You are the lovers rock The rock that I cling to You're the one The one I swim to in a storm Like a lovers rock Sade By Your Side You think I'd leave your side baby? You know me better than that You think I'd leave down when your down on your knees? I wouldn't do thatI'll do you right when your wrong I-----ohhh, ohhhIf only you could see into meoh, When your cold I'll be there to hold you tight to me When your on the outside baby and you can't get in I will show you, your so much better than you know When your lost, when your alone and you can't get back again I will find you darling I'll bring you homeIf you want to cry I am here to dry your eyes and in no time you'll be fine You think I'd leave your side baby You know me better than that You think I'd leave you down when your down on your knees I wouldn't do thatI'll do you right when your wrongI----- I, ohhhh, ohhhIf only you could see into me Oh when your coldI'll be there To hold you tight to me Oh when your aloneI'll be there by your side baby -------------------------------------------------------------- Just wanna be that someone you weren't looking for Some nameless fascination that showed up at your door And when you're sad and blue my jokes still make you smile And I could be with you awhile Alice Cooper Heal me with your laughter Make me smile honey, it’s been days Hold me in your arms now Lock me in your gilded cage Hold me till you heal me baby, Fix my hearts gaping hole Fix me babe I’m broken, Like that screen on your back porch Billy Hector The past didn’t go anywhere. It never does. I could go outside and pick up a rock older than any one living, drop it on your foot and prove the past didn’t go anywhere. Utah Phillips “Turn and face the strange changes. Ooh look out you rock n rollers. Ch-Ch-Changes. Turn and face the strange changes. Pretty soon now you are gonna get older. Time may change me, but I can’t trace time. I said that time may change me, but I can’t trade time.” David Bowie “Changes” “Days like this I don’t know what to do with myself. All day, and all night. I wander the halls along the walls and under my breathe I say to myself I need fuel to take flight. There’s too much going on. But it’s calm under the waves, in the blue of my oblivion under the waves in the blue of my oblivion.” Fionna Apple 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. Billy Hector “Yesterday is a memory Tomorrow is never what it’s supposed to be” Bob Dylan “We barely have time to react in this world none the less rehearse” Ani Difranco ----------------------------------------------------------------------- Ancient history: Here is my doctor's note at the end of treatment for my second round, but in doctor speak it lays out my history for those of you taking notes at home: 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. 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. Robert himself, as you well know, has not recovered his blood counts following his last cycle of carboplatin/ temzolomide, and required a platelet transfusion yesterday, and is also re-starting Neupogen 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. Dilantin was given and he was transferred to NYU on October 13th the 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. No seizures were recorded. On October 25th, a right craniotomy was performed by Dr. Werner Doyle. The post-op brain MRI performed on October 26th confirmed a near total resection of the tumor. 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. Robert was switched from Dilatnin to Tegretol, and subsequently followed with serial follow-up MRI’s, which were entirely stable until the study of January 15th 2003. This study demonstrated some extension of the T2/FLAIR signal abnormality inferiorly to the operative cavity, without any obvious gadolinium enhancement. Accordingly, I referred Robert to Dr. Werner Doyle, who reoperated on him on January 17th 2003, with resection of the recurrent tumor. 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 was also increased focally to up to 15%, compared with the initial tumor, raising the concern that this tumor was developing anaplasia. 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. He has I believe required one or two hospitalizations for febrile neutropenia. 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. However, after his next brain MRI in 2 months’ 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. 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. --------------------------------------------------------------------------- The longer you live, the longer the doctors can make you live. If you die, they can’t help you. That is the moral here. ------------------------------------------------------------------------------- 2 Corinthians 6:16So we do not lose heart. Though our outer nature is wasting away, our inner nature is being renewed every day. For this slight momentary affliction is preparing for us an eternal weight of glory beyond all comparison, because we look not to the things that are seen but to the things that are un-seen; for the things that are seen are transient, but the things that are unseen are eternal Thanks again.... Bob 4:03 PM Monday, March 07, 2005   3/7/05 The clock keeps ticking closer and closer. I have been up since 5 am got into the city by 630. MRI at 745 AM waited for someone to show up to help me at 8 am. I needed someone from my surgical team there. My MRI ran late then of course, they said no injection, then gave me an injection and dammit she stunk punctured my vein and all, I need them highways this week. I never saw her unfortunately I can’t ID her. 9:20 at the next appt. they call me in at 9:30 (still in the am here). Oh food check one muffin at 7 am. Now I have to do a Neuro-Psych exam. I know, I know you all know I am crazy, no they look to measure my current cognitive skills pre-op, and expect me to show up for another round of that post-op to look for any differences. So they say this can take all day, uh-like-no, next appt. 2:00 pm. So long story short, don’t remind me of these word short term long term memory games, I get it done in 3 hours. All of it. Then I see a woman from my surgical team she goes, “You ready for tomorrow?”. So I say, “You don’t know me.” Sorry wrong show I said no we go on Thursday, and she said she had an opening on Tuesday. Hey I may be a good customer, but I aint no sucker so I said, no everyone that is helping me has arranged their schedules around Thursday. I need to keep that. So she gives me a scrip. Then I do my pre-surgery testing with them. Remember Muffin at 7 am. It is now like 1:45 pm I am swimming in hunger, so we break out of there I eat 1 slice of Sicilian and ½ a meat roll, now we go from starving to bloated, and I am running no races, so bloated wins. So next appointment pre testing, basic, blood, urine EKG, chest x-ray. This takes like 2 hours, these people were killing me. Ever been so tired that the tile floor looks comfortable? I am there, at this point. I see 3 more people and am done around 4:15 pm. And now I am up writing this to y’all. My extended family. I am still debating a plane trip to Miami on Thursday, that is plan B. I dunno, my plate is getting a little, “ Bob is a scared MF’r now”. There are a few more details like 3 different cars to get me home from the city, when one driver and car is not enough. But I am wasted, and don’t want out of bed until noon tomorrow. Thanks for all the emails and energy I need it all this week, that is what is pushing my ass to do this in NYC instead of sunning in Miami. The Day The Whole World Went Away by Nin album: And All That Could Have Been (2002), The Fragile I'd listen to the words he'd say But in his voice i heard decay The plastic face forced to portray All the insides left cold and gray There is a place that still remains It eats the fear it eats the pain The sweetest price he'll have to pay The day the whole world went away na na nah na na na, nah na na nah na na na, nah Direct hits at people: We heard you were arrested in Mexico? Who get’s arrested in Mexico, they don’t have laws, That’s like Canada being a country! Quarters Book sales Don’t make me kick your ass in air hockey Skirt steak There is only 1 drama queen bigger than me, and it must be how we’re related Matthew the beach boy! Next: Lou Reed Sword Of Damocles - ExternallyI see The Sword of Damocles is right above your headThey're trying a new treatment to get you out of bedBut radiation kills both bad and goodit can not differentiateSo to cure you they must kill youThe Sword of Damocles hangs above your headNow I have seen lots of peoples diefrom car crashes or drugsLast night on 33rd st. I saw a kid get hit by a busBus this drawn out torture over which part of you livesis very hard to takeTo cure you they must kill youThe Sword of Damocles above your headThat mix of morphine and dexedrinewe use it on the streetIt kills the pain and keeps you upyour very soul to keepBut this guessing game has its own rulesthe good don't always winand might makes rightThe Sword of Damoclesis hanging above your headIt seems everything's done that must be donefrom over here though things don't seem fairBut there are things that we can't knowmaybe there's something over thereSome other world that we don't know aboutI know you hate that mystic shitIt's just another way of seeingThe Sword of Damocles above your head Next: I really hope to have everyone, and all their thoughts and energy carry me through this, but just one set of footprints can bring me to other side when I look back, I am in his hands….. 11:18 PM Sunday, March 06, 2005   Tick tock the time is growing near..... 3:24 PM Friday, March 04, 2005   3/4/05 So I am going into New York for a test today 3-4 hours of laying and doing nothing while some wires glued to my head monitor my brain waves. I guess the Dr's don't know my SAT scores. I got a neighbor who is nice enough to drive me in. 3-4 hours you guys are lucky I can't just stream of consciousness blog or toda’s update would be huge. But I promise to try to work up some philosophical psycho babble and try to remember it. I got a full day in New York on Monday also I have to be in the city by 7am for my MRI, then at 9am I have my Neuro-psych evaluation (another doctor that didn't see my SAT score). I went to Willy P not Columbia. Then at 3pm I have my surgery pre-testing. Usual blood work, ekg, paper work stuff. That way come Thursday I get my tee time and bang we go 18 holes, or however many holes the Neuro-mini-golf-tournament goes for. So that's the rough itinerary. This weekend I am getting my head buzzed pretty short, it's not needed, but will probably be easier for them. And they are not ripping the hair off my arms with tape I have buzzed them too. Hey I am an old ace at this. Number one mot feared part 9:30 AM Thursday, March 03, 2005   Everything happens for a reason, but no one ever tells you who knows the reasons. And why the hell can’t I pick some of the stuff that happens to me! 4:38 PM   3/3/05 I got a lot of supportive emails from friends yesterday after announcing my surgery date. Always a bridesmaid never a bride. Thank you for all the support. It’s great to hear that everyone is so supportive, I am trying to get an assistant at the hospital to book visitors for me, anyone know any out of work booking agents, heck MJI probably saw several get marched out of Clear Channel (you got $250 for that seat) wait I didn’t say that did I? I am waiting to hear back from scheduling at the Dr's office about all of my scheduling. I might have to go into the city on this Friday the 4th for some Neuro-psychology testing. Every time they have asked me to go, I never went. 1. I know I am crazy 2. I know I have a hole in my head. No it's actually used to see if over time your mind changes from treatments. Let's see we have tumors that keep coming back causing me seizures and trying to kill me eventually. Let's just say I threw out the aces in my deck and I don't worry about good and bad cholesterol. Eventually this thing will win. Not a Dr. in the world will really know when, Every day is a gift treat it like the first and last one all day and then hope for another one. Thank you for all the gifts of kindness and thoughts from my close friends. Update on scheduling I just had a call I have to be in the city for 1 pm to do some brain wave scan test thingy, I don’t know non-invasive but I have to lay there for like 3 / 4 hours doing nothing, maybe if I slip the host / hostess a $20 they will cut it in half? I dunno what’s make this test shorter etiquette? It took three Tuesday's for the Dr's to finally meet about me and now, it's down to one week until surgery. This is the two step surgery we did this the first time more thorough. I just remembering being very uncomfortable and in pain in before the 2nd operations. After the removal I don't remember to much pain past the first 24 hours. Five days after the removal you are out and back home. Recovery time from surgery is one month. Then we switch gears for futhe4r treatment, but that isn’t on our plate this week. Just the surgery thing, one thing at a time. I have learned a lot from the past, people, things. I saw grown ups as a kid that were into drugs pumping gas yeah I pumped gas at age 15. But I knew I wanted more from life than that. And my father taught me to be responsible by his actions, not by yelling or hitting. My father had been through so much but did the right thing and stayed right by his kids. It was just known that you wouldn’t want to disappoint him. We can never control other people and how they treat us no matter how hard you try you are not going to have complete control over other people. And what they will do to you. Friends and family come and go and when you are done with that filter of people, the ones that don’t disappear are your golden friends. The ones that get closer when things in your life are bad. You also have no control when life kicks your butt, remember most flat tires happen in the rain when you are late, I mean if it was 80 and sunny and you had time to get there it wouldn’t bother you so much. Flat tires aside, back to me…. I mean this being the third time I have a lot more clarity. I know I am a lot more at peace and mature about where I am. The first time pure denial, got out and rested and was back to work in 2 months. That spring back to driving and back on the Harley. The second time I felt very defeated because I was told by the doctors that if it came back again it would be a more aggressive tumor. I had 1 surgery and 9 months of heavy chemo I had idea what I was in for. If you know anyone on chemo help them any way you can. Don’t let pride get in the way they are suffering. So when I had the second one I dealt with the depression. You see I guess I am keeping this up so I can go through all the stages of dealing with it. I am after all a head case. I mean since the second time I have one glory run where I made 8 weeks without a seizure. But that streak ended and things just kept coming and have just spiraled up since. I remember a good month was only 1 or 2 seizures. In October things seemed to be getting worse. But dammit I had a vacation planned in November so I put everything off until December. I got new MRI scans and by that time the seizures were happening all the time. So Jan 3rd was my last day at work so we could get a plan in stage to go after this for the 3rd time. For more details on Jan to now if you are just picking this up go back through the archive. A PSA on tumor’s what they are and how they behave and how we attack them: What people don’t understand is that tumors are like cars. Let’s say I got a land rover and you got a Chrysler. Now there are a ton of other types of cars (tumors) out there. And let’s say my land rover is in the tundra of Alaska. And your Chrysler is in a garage in New Jersey (like tumors can be in all different parts of the brain). This is great my damn nieces could bring this to class and a bunch of little kids could understand it. So what do we get out of this is that different types of tumors in different parts of the brain. Some can be operated on some can’t. Can is better than can’t. If a surgeon can get say a pebbles worth of bad cells out then when you follow up with radiation and chemo there are a lot less bad cells to treat. Now tumors are also like trees, stick with me now. They have infiltrating branch’s (or roots) that run deeper than their location. This is all on the non-surgical cellular level and they run into the delicate important parts of the brain. If you are lucky the growth the treatments will stagnate the growth and increase your quality of life, and help you live longer. If the treatment doesn’t help anarchy continues. No telling from land rover to Chrysler how one environment will make a car / person last longer. The land rover may drive 150,000 miles through the woods and the Chrysler gets hit at 1,000 miles and junked. It’s a roll of the dice. 4:33 PM   4:33 PM Wednesday, March 02, 2005   2/2/05 I think I am still penciled in for next week for the knife. I just got a call from one of my doctor's and after 3 Tuesday's of trying they did have the meeting. So time is still of the essence (I just wanted to work that phrase in. He of course said the meeting went well and mentioned some other doctor stuff I have no idea about, one was an MEG? He said that test was non-invasive. Knock yourself out if you aren't poking cutting and stuff. I am still having the surgery of course but there are a couple of other things they want to do to try and help me. One thing he said that I don't know about was mapping and I don't know if he meant the mapping we do durring surgery or if it is the 2 surgery mapping. The 2 surgery thing I had once that hurt!!!! So now I await a phone call with more details. OK so edit here I got another phone call I have to go in this Thurs, or Friday for one test and then on Monday probably for pre-admission stuff, blook x-ray MRI etc. Then my first operation is next Thursday on the 10th. The second removal operaion I don't have a date on. Total hospital stay probably week and a half 2 at tops hopefully. It will be painful, and for UHC expensive, and myself for what they don't cover. But the plan is coming togethr. Raise your kids right and stay there for them so they don't turn out like head cases like me. OK so let's put a stop to all the conspiracy theorists that ask why my doctors do the things the way they do because you know people that have died via the same stuff. 1. you don't know it was the same stuff you couldn't even spell their or my tumors names. 2. Who am I supposed to listen to a team of doctors that have been in school longer than both of our lives or you? Thank you for letting me know your non-proffessional opinion. Next people bashing topic... My friends are my friends who have called and written to me, and offered the feelings, love, thoughts, prayers etc.. Not people that have not called me since halloween or written since Thanksgiving. Calling my father and playing 20 questions does not count as real support for me. So if you think this is you keep on keeping on and helping yourself. Side note this is only aimed at one kat, and had to be thrown out in case he picks up on this thinking by just reading this every once in a while it's good enough, yes kids Bitter Bob to the rescue. To Heather: Sade Lovers Rock It's Only Love That Gets You Through Girl you are rich even with nothing And you know tenderness comes from pain It's amazing how you love And love is kind and love can give And get no gain 1 - It's down a rugged road you've come Though you had every reason You didn't come undone Somehow you made it to the other side You didn't suffer in vain You forgive those who have trespassed against you And you know tenderness comes from pain It's amazing how you loveAnd love is kind and love can give And love needs no gain Repeat 1 You didn't suffer in vain You know it's only love That gets you throughOnly love, it's only loveIt's only love that gets you through 12:51 PM