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   Wednesday, April 27, 2005   4/27/05 Again not any gore to report. Sorry about that. I have 2 doctor appointments this Friday in the city. I have been working on my hand re-training / therapy. If I skip a day of working on it I find I have less function so I really have to keep at it even when it gets sore. I have more and more strength but still not the fine motor control that I would like back. There are still simple things that my mind tells my hand to do and it just doesn’t do. It is a lot better than when I could do nothing. But I can’t trust it still with lifting things. I think the solitude gets to me being a social person. But I know I don’t have the gusto to work. Just tracking down the insurance companies, HR firms (who are always on vacation) and trying to figure out what day it is is rough enough. None the less trying to take care of the house. I don’t have the stamina. I could never make a full day at work I would fall on my face. I guess today is just one of my dark days. I am also trying to cut back on the snacking thing that has my mood off a little. I am trying to eat better, carrot sticks to quell the munchies but we all know they aren’t filling. I don’t really know what it is pre-treatment blues, or just getting used to this lifestyle of not being independent anymore. That part of this deal hasn’t changed it still stinks. I mean before I was dealing with a lot more drama at home while on chemo, I was super down without the right support, but I won’t have to deal with that again. I have the support now to walk through hell. But I have been there and back, this time I am getting the t-shirt hat and tattoo to prove it so I don’t have to go back. I am also driving myself into hock right now readjusting to a lower income stinks. Right now I am traveling in the red big time with just the basics. Groceries alone are being piled on a credit card each week I hate doing that I just don’t have the money coming in to support my bills. Oh well you can’t take it with you. 4:05 PM Tuesday, April 19, 2005   4/19/05 I got nothing new really to report. Just hanging in there my head on the outside seems to have healed up pretty good. I just want to give a big shout out also to my faithful readers, and thank you for your continued support. The weather is great. OK when I am reduced to weather, I got nothing, hi that’s all. Nothing is worse, and the hand is still getting better. Oh and tomorrow is 10 months for Heather and I. Pretty cool. 5:32 PM Friday, April 15, 2005   4/14/05 Since then So in the week that followed I stayed by my fathers. He works second shift and my mom works days that way some one would always be around, if I needed help. Nothing much to report. I hung around relaxing Heather would come around at night. On Wednesday Lenny came by with sandwiches for lunch. Then Bonnie, Len, Grace, Heather and I went to the diner that night. The following night we all went out again and ate like fiends at the cheese cake factory it was great. To think one week before I couldn’t walk and now I went for like a half hour walk around the mall while we waited for our table. When we sat down I was tired! Then that Friday I got to home after 3 weeks. I was happy to be home. Heather stayed over on the weekend in case I needed help. But I was now on the road to recovery. Since then, I have been doing daily work to try to see how much I can regain in my right hand and a little exercise around the house trying to rebuild my strength and stamina. It’s a long hard road out of hell, but hey they bring you 3 square meals a day, temperature controlled nothing like they paint it to be. 3:56 PM Wednesday, April 13, 2005   4/13/05 Wrap up So that is it the chapter in the hospital. The stories aren’t over, for right now or since then there has been less to tell. This forum has been great therapy to get all that happened out there and helped keep my support system / network of friends in the know of what happened and what I went through. I know it took me awhile to get those 11 days up here, but that adds to the drama of those lonely nights in the hospital when no one was there to make you smile or want to fight on. The hours you fill with contemplation, the nice things your close friends do and say. It is all priceless. But at the same time that is what the life we have and squander away every day is. To live within miles of close friends but not to get together on any regular basis, wasteful. To work with great people and never have that hey it’s great to have you back lunch. Hey I wasn’t a surgeon I could leave my desk. I spoke to a lot of the nurses, and nurses aids about things sometimes hallucinations, sometimes their lives, sometimes their “everyday” lives,my life, everyone knew Heather or knew of her. It hit me that everyday they make a difference. For the nurses and aids there has to be a spiritual reward to working 12 hour shifts with just 1 hour lunch, no breaks. One aid asked me one night I don’t know do we really make a difference? I said every time we leave this building you make a difference. Not all of us leave breathing, but then you are not suffering anymore. I had little voice, but I always thanked everyone I could. When I started feeling better I made thank you cards up for everyone I came into contact with. The kitchen, nurses, nurses-aids, doctors, the union guys that did the cleaning all got cards. Keep this in mind in a helpless situation where maybe you are suffering bad, you never know where help can come from, thankfully I wasn’t suffering, and that wasn’t my reason in as much to thank people that don’t always get thanked. I tell you what; I mentioned that the nurses don’t always come when you buzz them. On one of my hallway walks I walked by the nurses’ stations, there were two, the amount of buzzers and beeps going off at any given time were maddening, I don’t know how they don’t go crazy from the sound. Always remember you can’t critique what you don’t understand. Something else that has been amazing to hear from so many people that actually regularly check this spot, and follow my progress. It means a lot and has been supporting in if itself. Thank you to everyone who has taken time in their lives to keep tabs on me. I know I have great family and friends, it has been great to hear someone complain if there was no new update, or say the morbid humor helped them through their own crazy day. Thank you to all of you for your interest and thoughts through this. I promise more drama in May the plan is radiation first, then another round of chemo. I am lining everything to start in May for radiation, I will start that in New Jersey at Morristown Hospital. 5:13 PM   4/13/05 Monday release time….. So Monday comes the big breakout day my mom and dad were coming to pick my up. Now let me start this by saying on the inside of the bathroom door is a sign that says discharge time is 10:00 am, you could imagine that they stick to this right? So I get up early but I was like you know what I will be home early enough to shower there so I skip the 6am hose down. By 7am I have everything packed. Breakfast comes around 8 am and the nurses were riding my rommie Les about eating more than a banana for breakfast so he decides to go for cereal today, well you know those little milk containers from school just enough for one of those box cereals, well the thing opens weird for him, and spills all over his hospital gown. It’s 8 am witching time when the nurses are changing shifts so no one is showing up. I get up and search the halls I can’t find a nurse at all, on my way back I spot a nurses aid who I ask for some help, she said I just got here I can’t help great system. I go back to the room and report to Les that things look bleak. Finally our nurse June comes in and he explains the situation to which she replies well what do you need? So he replies a dry gown and help getting into bed. Les has given up on this breakfast theory at this point. So she leaves comes back with a new gown, helps him into his bed, then says do you want this new gown? Of course he only had one retort, no I want to lay here in this wet one. My parents showed up around 9:45, by this point I saw Ed from the surgical team who gave me my discharge papers, and June had me sign myself out of the hospital. Also a social worker came by to say she was going to call my insurance to find out what I could get for in home treatment for my hand. Then she had to get in touch with an agency to come out and give me physical therapy and occupational therapy. So this is like 9am, we have this conversation. To cut to the chase, we were there until 3:30 pm. I was like can’t we leave and she calls me with the details on my cell phone? Nope you got to wait. And then at 3:30pm the social worker called the nurse and said he is all set let him go. What was the difference from that call or my request 2 hours earlier for the same call on my cell phone? Remember, the sign that says discharge time is 10:00 am. Nurses and doctor’s were coming by like you are still here? 11:30 AM Tuesday, April 12, 2005   4/12/05 Sunday Sunday was quiet. Just Heather and my dad came. My mom stayed home to clean since I was going there from Monday-Friday. The food was twice as late as Saturday. This was our 9 month anniversary. I felt bad it was the first one where I didn’t get her flowers. At night I made an authorized breakout with Heather to cafeteria around 7:30 pm. It was authorized because I asked the nurse who said we weren’t supposed to leave the floor but she asked the on duty doctor and permission was granted. This is how I found out how bad the cafeteria was. They had nothing there I would eat by choice. They did however have a frozen yogurt machine with all the toppings so we got 2 larges. And this was our anniversary treat. Do I know how to take a girl out or what? No joke with a small bag of nuts they got $13.00 for the stuff. So we went upstairs and talked about everything, me getting out earlier dates, how great things were between us. It didn’t matter where we were we got to enjoy eating frozen yogurt and being together. This is a huge part of my life I got even more thankful for while I was in there. 10:53 PM Monday, April 11, 2005   Saturday On the weekend not much happens at all every morning I am stronger. I shower each morning early. Wait forever for food. On the weekend it is different people and they do not care when you get your food this leads to cranky Bob. So again Heather was by my side on Saturday and Sunday. On Saturday Heather’s mom and dad drove in also. It was great to see them. They stayed for awhile then went back to Jersey. Heather drove in herself so she could stay later. And this wouldn’t be complete without me telling you about my roomie. An older man named Les who was a veteran. Traveled the world, Africa, France, Mexico. Loved gambling in A.C.. He was in Las Vegas when there was only the Flamingo. Most mornings he just coffee and a banana. Skipped lunch and then ate dinner. Loved music, played the harp, and could hassle a nurse like no-one’s business. Les always wanted doctors to come visit him. His great niece came to visit him and the topics were great. I guess Les was that cool great uncle to have and she was also from Ohio. Everything from her own and friends choices in birth control to getting married cause you are knocked up. You can learn a lot through a curtain. I had a suprise cisitor a friend Bob Byzell. Out of the blue said he was going to try to make it Friday and popped up today. 4:37 PM   4/11/05 Friday Heather drove in to see me just after rush hour. I had showered early and been up since 5:30 am again. I had breakfast then Heather showed up around noon my father showed up. Lunch came shorlt later again inter-spersed with Dr. visits of hi how are you going home soon, great, now I can bill $200. I spoke with my surgeon, and physical therapy was debating keeping me in the hospital for another 7 -10 days for intense Therapy for my hand. My surgeon agreed with me I was making great progress and I should go home with me family and recover there. So that would be our plan for a Monday release. One of my other doctors came in and said he thought it would be 2 months for my hand I told him no way 2 weeks (and in 2 weeks when I went in for my staples out I was a lot better, I still have work to do). One doctor asked me to allow a student doctor to do a general exam on me so I agreed. Poor guy had to get a medical history on me that was one of the reasons the doctor chose me, 3 times for the same crime. This went through a whole oral work up and history and a once over physically. Not to bad but about 45 minutes. My dad left for work. Heather was still there about 6pm Felix and Barbara 2 more of my friends came to visit. They stayed until I was ready to drop around 8:30 pm, then Heather went home You will note less and less happens now as we approach my release. The weekend to come will be a virtual ghost town outside of Heather and mom and dad. 4:18 PM   Thursday was to be my big day of going for a walk. Heather road the bus in didn’t think it was that bad (little did she know that local on the way home would teach her). So the physical therapist came in to get me up and walking. No big deal right? OK maybe it is. Like whoa, you know that I drank a little to much that it makes one side of my body to heavy feeling. That was it. Turns out during surgery they cut right up to my left leg motor control area and that irritation was what was throwing me. So I didn’t really pick up my left leg it dragged a bit, and I leaned that way. So she was very helpful and showed Heather how to walk the old dog and to tap my shoulder when I didn’t walk straight. She loved to mess with you also, walk backwards, sideways, now walk straight turn your head to the left, now to the right, stop, so I told her no, you get the building to stop spinning around me. So then I get walked back to my chair. Stable non-moving ground this I can get used to. I rest off my exploration after being told I wasn’t the walker of the year. The Occupational therapist came in also I still had no real use of my left hand. She gave me some things to try to do, none of which my hand was willing to do yet. Friday I got up early for my shower again. Then waited for my breakfast. Heather drove in and was in pretty early it was always great to see her come around that curtain, my eyes would light up. She was so cute, once she was there she didn’t leave the building, to the torture of only getting meals from the cafeteria. She would get there come up and see me first, then go get something to eat, and if you know anything about the elevators there I was on the twelfth floor this was utter torture just getting up and down, then I heard the doctors have a secret way of whipping all the floor numbers out and hitting where they got to go, that’s pull. Then my dad would showed up around noon. Then a couple friends, Liz and Claudia, showed up on their lunch which was a great surprise. I made a point of trying to always get up when friends came over so I didn’t look totally lame in that chair. So the afternoon was pretty quiet. Lunch, dad and Heather and TV court shows. That night I had more visitors John and his wife, of course John went into the wrong hospital first where they keep the “other” head cases. I don’t know if he went there for him or me. Then Holley from my job also came and we caught up it was a busy night. I was wiped when everyone broke out. What I did learn was being that most of the nurses worked 12 hour shifts 8-8. The hours of 7-9 were witching hours, you better not have any real needs then because no one is going to come especially outside of ICU, we were chop liver. So you had to arrange your schedule around theirs like if the nurse came with med’s, that was your only shot if you needed something, and even if you asked for it, it didn’t mean you were going to get it.. The nurses assistant’s came around for vitals by us around 5:30 am so if I wanted a shower that was when it was going to happen so at 6 am I would be getting showered up. I was just happy to be able to get out of bed and get that shower and once that happened I wasn’t getting back in bed so I would sit up in the chair from 6am – 830 pm, when I laid down I passed out. My surgeon did stop by at the end of his day. Now this doctor was with my parents and Heather until midnight after my first surgery, Then he was in his office until 1am. He was at my bed side at 5 am the next morning. So to bring you back to the current timeline it is Thursday at 8:30 pm and he is here checking on me again. So before I went in I decided to do a little something to give back to his son, who is 16 and plays guitar. I wanted him to know that even though he has to share his dad with all his patients, that the things that his dad did for us everyday made his dad a hero. All that mushy stuff was in a card, but what was in this soft case which looked like a gun case was the last guitar I bought to go away with a long time ago. A Martin backpacker. It is a small guitar, remember gun case with nylon strings. It just so happens that his son is going up to Alaska this summer to work with some very poor Eskimos, So this will be perfect for that trip. My surgeon who is very humble said no at first, but I think he saw how much it meant to me to give something back to him. All of my energy gone from a day of talking and sitting. I made a few calls and left messages with what little voice I had left. I then put the IPod on 30 minutes sleep timer and was out. Up at the 5/5:30am round again. Of course the next morning he came in quick to tell me how much his son liked it, and that he wanted to know about me, and was wowed. It still really means a lot to me that I was able to thank his son and family for their sacrifice of his time. 3:56 PM   Here it is the end of Wednesday: Around dinner time my friend Felix came to visit with a friend from his job. It was great to see him. We talked for awhile. And then they had to get back home. So I am on the phone with Heather and I get a visit from a friend from 10 years ago. But from forever ago. Alexis had seen my blog was updated, and was concerned, she wrote to me and told me to call her from the hospital, but being a stubborn Aries, and me having guests most of the days she just showed up after work. So I told Heather I had a visitor and that I loved her and we hung up. So we sat and talked for awhile hashing up some stuff, but she helped me remember a different me from back then, and told me I was a good person which meant a lot to me, and we were happy for each other, both of us having special people in our lives. My roommate had his TV cranked up so I used my IPod to sleep. This song came on and fit the situation to a T with these lines: Bob Dylan Standing in the Doorway Last night I danced with a strangerBut she just reminded me you were the one It kills sometimes when one person can help you gain so much current perspective, just out of being a caring person. Thank you. Heather: Bob Dylan Wedding SongI love you more than ever, more than time and more than love,I love you more than money and more than the stars above,Love you more than madness, more than waves upon the sea,Love you more than life itself, you mean that much to me.Ever since you walked right in, the circle's been complete,I've said goodbye to haunted rooms and faces in the street,To the courtyard of the jester which is hidden from the sun,I love you more than ever and I haven't yet begun.You breathed on me and made my life a richer one to live,When I was deep in poverty you taught me how to give,Dried the tears up from my dreams and pulled me from the hole,Quenched my thirst and satisfied the burning in my soul.You gave me babies one, two, three, what is more, you saved my life,Eye for eye and tooth for tooth, your love cuts like a knife,My thoughts of you don't ever rest, they'd kill me if I lie,I'd sacrifice the world for you and watch my senses die.The tune that is yours and mine to play upon this earth,We'll play it out the best we know, whatever it is worth,What's lost is lost, we can't regain what went down in the flood,But happiness to me is you and I love you more than blood.It's never been my duty to remake the world at large,Nor is it my intention to sound a battle charge,'Cause I love you more than all of that with a love that doesn't bend,And if there is eternity I'd love you there again.Oh, can't you see that you were born to stand by my sideAnd I was born to be with you, you were born to be my bride,You're the other half of what I am, you're the missing pieceAnd I love you more than ever with that love that doesn't cease.You turn the tide on me each day and teach my eyes to see,Just bein' next to you is a natural thing for meAnd I could never let you go, no matter what goes on,'Cause I love you more than ever now that the past is gone. 3:48 PM Thursday, April 07, 2005   4/7/05 So things are going well. I am still working hard on my left hand. I am typing with it right now, but it is clumsy and makes mistakes. Heather has bronchitis and I hope she keeps it and gets rid of it. I am done with my in home occupational therapy and now might try to do some out patient work, heck I hate doing this stuff, but I need to get the fine motor coordination back. I need to get as close to 100% before I start this radiation, and it kicks me butt. Here’s the next installment of Wednesday. I am stretching this one out here, also I need to check with Heather on what days certain things happened. Sorry I was on drugs at the time. So then I am sitting in my chair now, lunch comes. The guy in the room next to me is on bed rest I never met him, but he wasn’t up and moving that much I knew. I heard his nurse call button go off. And a couple minutes go by and no one showed up so he called out help I spilled my coffee. Now I am sitting up but can’t walk yet, but I hit my call button also. I tried calling out also, buy my voice was still so hoarse; I knew no one would hear me. It had to be like 10 plus minutes before someone helped him. I felt bad for him. So the big talk of the day was me moving out of Neuro-ICU into a regular room. Room # 4 for me, next step for me would be out the door. So some time that day I met my Occupational therapist. She came in and there wasn’t a lot we could do yet, but she stretched out my arm, and said she would see me again. So they came to get me in a wheel chair and carted me off to a regular double room. It looked good when I got in there and got the window bed and was solo. Never count chickens 11:00 pm they wheel in a room mate. When I moved into the room I stayed sitting up in the one chair on my side of the curtain. But by the time he came I was thrown back into bed already. Now I hit the big time had a phone and all. Now I just needed a voice. 10:35 PM Tuesday, April 05, 2005   I still have to finish out the hospital stay stuff. But just a quick current status update. My walking is about 95%. It gets worse when I am tired (same with my hand). Don’t ask me to run anywhere. I have had 3 occupational therapist visits at home. So now I have a whole group of hand exercises that I have to do 3 times a day. At night is the worst because it feels like a setback, because the hand gets lazier, and tired. I can do some basic cooking again. I can type a little with it, but it makes to many mistakes so I end up doing the one handed shuffle. I am still thankful of all the signs of support all around me in the form of calls, emails, dinners, help with rides. And of course Heather, who is everyday By My Side. 3:54 PM Sunday, April 03, 2005   Here is most of what I can remember, and some things I won't tell about my second operation: So Tuesday comes around, no breakfast for surgery boy. I wait until they come to get me around 10:30. The whole morning, my nerves are going mainly because I had no breakfast probably. Me minus food = ugly. So I get a ride back to the building I was in 16 hours before but to the surgery door. This is it fight or flight and they got wires sticking out of my head I ain’t flying anywhere. So my surgeon is there, some nurses, the anesthesiologist, my parents. So I start firing a few questions. The first surgery wrecked my voice but for this one since they are waking me up during it and need me to talk, they aren’t putting anything in my throat, here’s a guy with a limp non-functioning hand, worrying about his voice. Yes you read right, they are waking me up and talking to me during this operation. It goes like this; they wheel me in, put a new line in my arm start up the happy juice, I go to sleep. When the head is all opened up and they need to start cutting, they bring me back just enough so while they stimulate areas I can tell them I feel things. Now keep in mind one of the doctors that did the mapping was right there in my face coaching me through this. She was great, if it was up to me because I was doped up still I just kept saying let me go to sleep, over and over. This went on for like 2 hours. You see it’s like this, my surgeon wanted to get out as much bad stuff, but keep in touch stuff like my sensation, so he could do it asleep and cut up to where my finger wiggled, but, awake he will know when I feel a sensation, something he wouldn’t know if I was sleeping. It went on for 2 hours but it doesn’t seem that long in retrospect maybe one hour. They get all the information they need from you, then they put you asleep again, which was fine with me. So the next thing you know they wake you up in pain. I saw my surgeon at my feet and called him over. I told him to put his hand in my left hand. I squeezed his hand with more strength than I had pre-surgery. I knew I would have more strength after surgery none of the doctors could predict this. So I am all in pain and they didn’t want to give me morphine. So they shot me up with codeine. Moved me back to Neuro-ICU now into my third room for those keeping count. I get another shot of codeine. Still does nothing. I finally got a nice morphine shot on the third time. Time for no pain and wacky dreams. Now this shot proved to be filled with lots of magic in the hallucination zone. I remember in the middle of the night from the darkness, my cat bitchy meowed to me. There were some voices also, but I don’t know what they were saying. I was in and out of sleep. I had a woman nurse who was really nice. I remember she was in one of my scenarios too. Something about the fact that she went away on vacation and her sister was mad and jealous. So she gave her sister her frequent flyer miles to go away, but for whatever reason they needed another person on the plane so they used me saying well this guy will be out of it and sleeping take him. Well we got ½ way there, and the people on the plane were like we got to get this guy back to the hospital, he’s a mess. Let me not forget boarding the plane we slid down these carnival type slides, and the walls were painted in those Dunkin Doughnuts colors. Now keep in mind I am not allowed in a plane until my head gets solid because of the pressure changes. My whole plan to get to a nice sunny destination was flawed. So later when the nurse came in I asked her if she had any sisters, she said she had 3 so I told her about my twisted dream and her jealous sister, I don’t know which one it was. So I was a ball of laughs when I would wake up from these colorful hallucinations. I was able to get breakfast, from the woman that I called the breakfast angel, and was scheduled for an MRI to check on the hole in my head. I of course had like 3 lines in my arms 2 in my right. One line in my left. No more lines out of my head, not even a blood drain, just one big football helmet compression dressing, and a catheter which comes out before I get up. The dressing was wrapped around my head so damn tight, cause it was what holding humpty dumpty together, but it came across the edges of my eyebrows and covered my ears. I had made a vow to one of my nurses that I would be sitting up in a chair on Wednesday, and walking on Thursday. Well the nurse I swore that I would be sitting up on Wednesday came by and said so it’s time to get you out of bed, and this was a big guy, Leon a great nurse, so of couse rag-a-muffin me had to suck it up and get up. So they come to get me in the middle if the day for my MRI in a wheel chair. I am feeling like hell. You know that bus has hit me and I am awake why? My left arm is still useless at this point. The transport lady stopped at the courtyard to show me their koi pond which is tiny. I told her that was my dinner. But I am feeling like 100 years old at this point being wheeled by all these Pharmaceutical tie wearing reps thinking, I am youngish, and they all have no clue what this is like. I get down to MRI, and have to wait like 20 minutes. It’s so bad that the long term employees down there know me. I get wheeled in and not only can’t I jump on the bed myself. I have to wrap my good around the back of this guy’s neck so he can guide me onto this table. I am sure I wasn’t the first or last person he helped, but it was me that was feeling like what am I gonna do. How do you tie sneakers one handed? Oh they tell me no contrast injection so the scan should be a half an hour which I am cool with. I hear the door open after 20 minutes and I am like great get me outta here. Only to be told we are doing a contrast. I tell you professional patients like me know what we always get. So after waiting for the nurse to show up and shoot me up they put me back in the tube. So they put me back in which seemed like forever. I am not kidding it was like at least a 45 minute scan total. Oh but the best part is the mind tricks the machine did to my still drug induced state, of course I was getting like lets go already, but if you have ever been in that tube the magnet makes a racket. So I hear it “saying” “It’s bad, It’s bad, It’s bad, It’s bad, It’s bad, It’s bad” for like a couple of minutes so my paranoia is peaking now. And then we go into this like 5 minute scan where the table shakes that I am laying on so now they are shaking my head, which let me tell you is not solid yet. So my skull is shaking and I swear the magnet this whole time has been ever so slightly moving my staples. H-E-A-D-A-C-H-E. So eventually like all good tortures it comes to an end and the radiologist and I do our one handed dance off the table and into my wheel chair. So now I go back out into the hallway waiting for transport back to my room. Someone walked by and said see-ya. I was like I’ll be back in 3 months. So my head is all achy, I just want to crawl up, I think this for whatever reason was one of the worst times of my stay having to be wheeled through the lobby seeing peoples who’s biggest problem was drinking Starbucks coffee before it got cold, my head hurt I was lonely and still drug induced. I get back to the room, and back in my chair. I remember it was broad daylight and I was in the room alone, I heard a voice come from nowhere in a whisper say, “You’re OK”. I was like huh. But that was it. I decided right there and then to take that statement over the MRI torture. 10:15 PM Saturday, April 02, 2005   4/2/05 Lou Reed Magic and Loss When you pass through the fire, you pass through humble You pass through a maze of self doubt When you pass through humble, the lights can blind you Some people never figure that outYou pass through arrogance, you pass through hurt You pass through an ever present past And it's best not to wait for luck to save you Pass through the fire to the light Pass through the fire to the light Pass through the fire to the light It's best not to wait for luck to save you Pass through the fire to the light As you pass through the fire, your right hand waving There are things you have to throw out That caustic dread inside your head Will never help you out You have to be very strong, 'cause you'll start from zero Over and over again And as the smoke clears there's an all consuming fire Lying straight ahead Lying straight ahead Lying straight ahead As the smoke clears there's an all consuming fire Lying straight ahead They say no one person can do it all But you want to in your head But you can't be shakespeare and you can't be joyce So what is left instead You're stuck with yourself and a rage that can hurt you You have to start at the beginning again And just this moment this wonderful fire Started up again When you pass through humble, when you pass through sickly When you pass through i'm better than you all When you pass through anger and self deprecation And have the strength to acknowledge it all When the past makes you laugh and you can savor the magic That let you survive your own war You find that that fire is passion And there's a door up ahead not a wall As you pass through fire as you pass through fire Trying to remember its name When you pass through fire licking at your lips You cannot remain the same And if the building's burning move towards that door But don't put the flames out There's a bit of magic in everything And then some loss to even things out Some loss to even things out Some loss to even things out There's a bit of magic in everything And then some loss to even things out 10:58 AM Friday, April 01, 2005   4/1/05 Well, the nurse did not show up yesterday, and I have no idea what time she meant by coming on this afternoon. The saga continues…… Now on Monday things started jumping around the hospital. All the doctor’s were back on duty. I saw my surgeon, seizure doctor, nurse visits with steroids and anti-biotics. And it was brain mapping day lot’s of fun. Here I had 2 doctors working on me at the same time one on each side if me. One worked the computer that monitored my brain map where all the wires went and also sent electrical charges to spots that both of them agreed on in my brain. The second dr. on my left kept track of what was happening where. So it was like battleship they would call out coordinates, and they would shoot juice there. Now I know you want to know if this was painful, no you don’t feel any pain. But what happens is they find the area that triggers your seizures and areas that trigger sensations and things like finger movements. So sometimes you will feel like someone is running their finger across you’re the inside of your finger tip. They make your tongue wag, arm move, eye twitch the works. And then for surgery they know boundaries of where they can cut up to without hurting you, or making you lose sensation. Kind of cool, and makes the operation a lot safer. The whole test was probably like an hour. They got great borders for my noodle and great seizure data. So I was all set for surgery or was I. The surgery lab was on the 6th floor of the building I was in on the 12th floor. But they needed my room for someone else. So there was a move put in for me to go to the other side of the hospital for the last 16 hours before my surgery. Then after the surgery keep in mind I was coming right back to Neuro-ICU. So the move was silly in a way, but who am I to say. So I move to this room with 4 people in beds in all 4 corners of the room and one nurse wit us at all times in the middle of the room. My wires are still all hooked up and a camera is still on me. A really great nurse here though. I am slightly paranoid at this point of my looming second surgery scheduled for around 10 in the morning. Wait until you hear about this one. Cliffhanger….. 1:22 PM