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   Friday, December 30, 2005   12/30/05 This is a timeline summary of the last 6 years of treatment for my Brain Tumor. 10/11/99 Diagnosed with Brain Tumor 10/18/99 Brain Mapped during surgery 10/25/99 Brain Surgery to Remove Tumor 12/15/99 Back to Work 11/26/02 Diagnosed 2nd Time 1/16/03 Last day of work 1/17/03 Awake Brain Surgery to Remove Tumor 3/6/03 Carbo Platin and Temodar start 3/7/03 2nd Day 3/8/03 3 more days of Temodar 3/18/03 Platlet Transfusion 3/22-29/03 Admitted to hospital with 102 fever Morristown 4/21-22/03 Carbo Platin and Temodar start 4/23/03 3 more days of Temodar 5/2/03 Platlet Transfusion 5/5/03 Platlet Transfusion 5/7/03 Platlet Transfusion 5/14/03 Platlet Transfusion 5/17/03 2 Pints of Blood 5/19/03 Platlet Transfusion 6/9-6/10/03 Carbo Platin and Temodar start 6/11/03 3 more days of Temodar 6/20/03 Platlet Transfusion 6/23/03 Platlet Transfusion 6/27/03 Platlet Transfusion 7/3/03 2 Pints of Blood 7/7/03 Platlet Transfusion 7/29-7/03 Carbo Platin and Temodar start 7/31/03 3 more days of Temodar 8/11/03 Platlet Transfusion 8/15/03 Platlet Transfusion 8/22/03 Platlet Transfusion 8/27/03 Platlet Transfusion 1/1/04 Started maintenance chemo Temodor 2/13/04 Last day of Temodor 3/24/04 Started maintenance chemo Temodor 5/5/04 Last day of Temodor 6/1/04 Back to Work 6/10/04 Started maintenance chemo Temodor 7/22/04 Last day of Temodor 8/23/04 Started maintenance chemo Temodor 10/3/04 Last day of Temodor 11-12/04 Diagnosed 3rd time for Surgery for Seizures / Tumor 12/23/04 Started maintenance chemo Temodor 2/3/05 Last day of Temodor 1/3/05 Left work on disability 3/10/05 Brain Mapping Surgery with small Hemorrhage bleed from brain mapping device on right side. Left arm paralysis. 3/15/05 After monitoring all weekend Awake Brain Surgery 3/21/05 Home from hospital 4/05 Occupational therapy for arm 6/1/05 Started maintenance chemo Temodor 7/15/05 Last day of Temodor 6/6/05 Radiation begins with (33 Treatments). 7/21/05 Finish Radiation. 11/18/05 Start Chemo Lomustine 12/5/05 Lincristine injection Currently waiting for blood counts to stabilize for 3rd chemo drug Blood testing twice weekly. 6:15 PM Wednesday, December 21, 2005   12/21/05 People don't realize what it's really like to survive this at times. I am winning right now but have fought tooth nail, kicking and screaming through this not to die. I see things different than all the people I talk to unless they have lived through this. Hey if it still hurts I am alive. Imagine for a minute not being able to eat out at all, even most pre-packaged foods. Not even being able to eat at friends, and forget hanging out with sick people. The next drug I am taking has conflicting food interactions. My choices cook fresh meat meals for myself and no leftovers past 2 days. Granted it's only like 4 weeks, you try it. Wait here's a general list of what you can not eat. Cheese, aged meat, ham, no cold cuts. No take out Chinese no take out anything. No nuts, which includes coking with nut derived oil. No alcohol, teas or coffees, can't even have boost shakes for nutrition, based on their ingredients. After all this time I am gaining a sense of pride and accomplishment from my survival. I never used to think it was anything more than what I had to do. Now I know it's what I needed to do to get to this good point in life. I don't feel bad for myself. I just wish everyone could gain some perspective and insight as to the daily physical, emotional, and financial burdens we live under being disabled, not being able to send the mortgage out until the government check clears, I have no savings just a checking account to push the money through for the bills. It's the times you need to make a living, you aren’t, you have to borrow to survive. And then sink in debt, further and further. My last MRI report was kick ass it proved I have a hole in my head and also true nothing is happening in said hole which kicks ass. Oh and happy holidays from the guy with a hole in his head thanks for keeping up with me, and following my drama. Pray for our troops. 3:01 PM Tuesday, December 06, 2005   12/6/05 Medical update: Last Friday I took my new chemo. I paid a $50 co-pay for 2 pills. I felt like crap until Monday. This Friday I go into NYC for an injection. Then the third drug I take everyday for 2 weeks, might just make eating for x-mas tricky. I have to go back to eating for a chemo patient, no fresh fruit or vege’s everything has to be cooked. Juices pasteurized. If you are sick stay away from me. Fun times, I am looking forward to family times around Christmas. To Heather U2 City of Blinding Lights The more you see the less you know The less you find out as you go I knew much more then than I do now Neon heart dayglo eyes A city lit by fireflies They're advertising in the skies For people like us And I miss you when you're not around I'm getting ready to leave the ground.... Ooh ooh oohOoh ooh ooh Oh you look so beautiful tonight In the city of blinding lights Don't look before you laugh Look ugly in a photograph Flash bulbs purple irises The camera can't see I've seen you walk unafraid I've seen you in the clothes you made Can you see the beauty inside of me? What happened to the beauty I had inside of me? And I miss you when you're not around I'm getting ready to leave the ground Ooh ooh oohOoh ooh ooh Oh you look so beautiful tonight In the city of blinding lightsTime... time Won't leave me as I am But time won't take the boy out of this man Oh you look so beautiful tonight Oh you look so beautiful tonight Oh you look so beautiful tonight In the city of blinding lights The more you know the less you feel Some pray for others steal Blessings are not just for the ones who kneel... luckily 2:02 PM Thursday, November 17, 2005   11/17/05 Medical update: I am starting my chemo soon beginning of December, it's finally decided a 3 drug treatment we will see how my body will handle it. My long term disability was restored and I like you am still broke, just definitely not as broke. More cleaning out my family closet if interested read on if not check out. What's cool about the blog is instead of playing wedding requests I can put up songs I like and that mean stuff to me. Artist: Lou Reed Album: Berlin Title: The Kids They're taking her children away Because they said she was not a good mother They're taking her children away Because she was making it with sisters and brothers And everyone else, all of the othersLike cheap officers who would Stand there and flirt in front of me They're taking her children away Because they said she was not a good mother They're taking her children away Because of the things that they heard she had done The black air force sergeant was not the first one And all of the drugs she took, every one, every one And i am the water boy, the real game's not over here But my heart is overflowin' anyway I'm just a tired man, no words to say But since she lost her daughter It's her eyes that fill with water And i am much happier this way They're taking her children away Because they said she was not a good mother They're taking her children away Because number one was the girl friend from paris The things that they did, ah, they didn't have to ask us And then the welshman from india, who came here to stay They're taking her children away Because they said she was not a good mother They're taking her children away Because of the things she did in the streets In the alleys and bars, no she couldn't be beat That miserable rotten slut couldn't turn, anyone away I am the water boy, the real game's not over here But my heart is overflowin' anyway I'm just a tired man, no words to say But since she lost her daughter It's her eyes that fill with water And i am much happier this way ------------------------------------------------------ I am not the one who will judge you….. Did you notice your daughter made up with you when she needed money for a wedding? Before that she called you every name in the book. Do you really know why you don't enjoy coming out here? Gee am I ever around? I need to forgive you ... what are you worried you weren't around in my happiest and saddest times? We all make choices my father taught me responsibility and loyalty in my choices.... you made your own choices for yourself at the time, it isn't my problem to need to know why, I know right from wrong. Your choices were wrong. I am starting the best time in my life now, and have lived through my darkest hours without your support. I am still fighting with my A team. You can keep your miserable daughter. She pushed her husbands family away just like you. Congrats. 3:30 PM Wednesday, November 16, 2005   11/16/05 The things that can be done to help us survive and to cure us have become very expensive. What's the alternative? I'll tell you what it is; Go back 50 years, don't take medication, don't have surgery and die young. 7:27 AM Friday, November 11, 2005   This one is from bitter-Bob to all you people that are still toi busy to say hi, I decided to let you off the hook and give you a song from you to me, thanks. You probably didn't thank a veteran today either that's between you and your consciousness Bob DAVID BOWIE - Everyone Says 'HI' Album: Heathen Said you took a big trip They said you moved away Happened oh, so quietly They say Shoulda took a picture Something I could keep Buy a little frame Something cheap For you Everyone says hi Said you sailed a big ship Said you sailed away Didn't know the right thingTo say I'd love to get a letter Like to know what's what Hope the weather's good And it's not too hot For you Everyone says hi Everyone says hi Everyone says Don't stay in a sad place Where they don't care how you are Everyone says hi If the money is lousy You can always come home We can do the old things We can do all the bad things If the food gets you leery You can always phone We could do all the good things We could do it, we could do it,we could do it Don't stay in a bad place Where they don't care how you are Everyone says hi Everyone says hi Everyone says hi And the girl next door And the guy upstairs Everyone says hi And your mum and dad Everyone says hi And your big fat dog Everyone says hi Everyone says hi Hi hi hi hi 8:08 PM   11/11/05 Did you notice it was Veterans Day today, or did veterans die so generations after them could forget their pain? Say thanks to people that protect your lame ass freedom to: talk to loud on a cell phone on a bus, pay to much for coffee, eat fast food everyday, so you can drink beers from around the world, not wait in line only to find out that there is no more bread at the store. I mean I pass a grocery store to get to the better shop-rite. These and many other dumb things are all freedoms we have because men and women fought for this country. Imagine your life with your IPod sweet right? Now imagine it without it. Thank your military forces past and present, thank them for everything you have EVERYTHING. For you dad, still my hero (Where do you think I learned how to fight this? Certainly not from a mother that walked away, no, Donna does that.) Sometimes You Can't Make It On Your Own by U2 Album: How To Dismantle an Atomic Bomb Tough, you think you’ve got the stuff You’re telling me and anyone You’re hard enough You don’t have to put up a fight You don’t have to always be right Let me take some of the punches For you tonight Listen to me now I need to let you know You don’t have to go it alone And it’s you when I look in the mirror And it’s you when I don’t pick up the phone Sometimes you can’t make it on your own We fight all the time You and I… that’s alright We’re the same soulI don’t need… I don’t need to hear you say That if we weren’t so alike You’d like me a whole lot more Listen to me nowI need to let you know You don’t have to go it alone And it’s you when I look in the mirror And it’s you when I don’t pick up the phone Sometimes you can’t make it on your own I know that we don’t talkI’m sick of it all Can - you - hear - me – when – I –Sing, you’re the reason I sing You’re the reason why the opera is in me… Where are we now? I’ve got to let you know A house still doesn’t make a home Don’t leave me here alone... And it’s you when I look in the mirror And it’s you that makes it hard to let go Sometimes you can’t make it on your own Sometimes you can’t make it The best you can do is to fake it Sometimes you can’t make it on your own Remember your vets they fought for you and me. 7:44 PM Wednesday, November 09, 2005   The grumps. Sometimes we get 'em. I don't know where they come from all the time. I don't know if it can come from subconscious nerves of this treatment. I know some of what is around the bend some things I don't know. Chemo Sucks. F Cancer. I am sorry to the people affected directly by this. I feel like a grumpy bear that needs to crawl into his den and hide, but thats not an option for me. I have people that can't live without my witty banter, me being one of them, could anyone that knows me imagine me being quiet? 9:46 AM Friday, November 04, 2005   Blood test done today. Heather still in a sling. Walk it off I know!!!!!! j/k Dogs in trouble today. Exciting life. Biggest problem I don't know if I am getting any Netflix movies in time for the weekend.... drama.... 11:31 AM Wednesday, November 02, 2005   Got my flu shot... another Dr. apt tommorrow, blood tests Friday. MRI on the 14th. Dr. apt. on the 9th just rockin and rollin in needles and questionaires. Makes ya jealous I know. Heather Banged her elbow good last night, another dr. visit tonight. 11:02 AM Tuesday, November 01, 2005   My insurance company finally got my update from my doctors office. Now I just have to wait to see of Met Life still deems me disabled. I guess with this tumor thing happening 3 times some friends get past making a big deal about it/ staying that close. Or they think it is closer to consuming me, and fear keeps them from being close. Either way I am still here, It just gets quiet sometimes, dead quiet. I wish I could go out more and do more but I just don't have the energy to go out and with this chemo thing coming up I will be imprisoned here. I know certain cats that have dropped off of the radar, I know keeping up is a 2 way street, so a little while back I tried to reach out to a bunch of supporters. We passed emails and it went back to quiet. You see when you are out like this, you feel like you are interrupting peoples lives. I know I am in a lot of thoughts and prayers and for that I am very thankful and at any time I have some troops at a phone calls distance it's a great feeling. Maybe it's just because I am such a social-talk-a lot monster that I miss that social interaction. But I do get to call doctors offices and insurance companies a lot. I like people that are so close locally in NJ and have not seen me at all this entire year. Nice close friends, no big deal nothing Bob hasn't done before. People are strange when you're a stranger Faces look ugly when you're alone Women seem wicked when you're unwanted Streets are uneven when you're down When you're strange Faces come out of the rain When you're strange No one remembers your name When you're strange When you're strange When you're strange People are strange when you're a stranger Faces look ugly when you're alone Women seem wicked when you're unwanted Streets are uneven when you're down When you're strange Faces come out of the rain When you're strange No one remembers your name When you're strange When you're strange When you're strange When you're strange Faces come out of the rain When you're strange No one remembers your name When you're strange When you're strange When you're strange 7:54 AM Friday, October 28, 2005   10/28/05 Back to the trenchs of pain and agony. Dogs reek havoc on my sleep is one thing at least they are cute. Now meds are gonna take away my food and maybe health aah the dark days will be upon us. Have an MRI, cold to pass, blood test, and my troopers need to go to the bank, thrilled. Biggest fear is going to the hospital sick for another 8 days of hell. Turns out only two of the three meds are oral one is intravenous, given in the cancer clinic through a vein, great I don't know where or how many days. Does it matter, one is too many, I am thankful for my support network of family and friends around me. The surgery / radiation combined don't hold a candle to this utter torture. Trust me I know. I wouldn't wish this on anyone. And I like my grudges. Should be great. I don't miss this New York bus at all the hustle and bustle I just don't have the energy for it, and it is a hell of a long way to go for a piece of pizza. I still have no answer on my insurance, If I don't get it I will be sleeping in a van like a homeless man biggest problem I don't own a van. None of this is my decision though; it's just a hell of a way to get from point A to B. Just when you think you are out it pulls you back in. My biggest concern is just being able to start the next chapter of my life correctly and to be a good provider and husband. Every breath I take is beautiful because of her. I am super lucky to have her families support through this. I obsess about things but not about losing this battle. Why do that when a car could run me over first and I wasted my life running from a monkey in my head. Time to reopen a bus load of faith to help me get by. People run around with their me's and wants so much, ever just give of yourself just to get a thank you. That right there is power ball lottery stuff. Ever do that stuff and don't get the thank you, put it in the hands of karma at that point, or really see out the eyes that were looking at you. Lot's of people think I am so brave, no just my survivorship mechanism kicks ass, we all want to wake up another day. You got 2 choices you do what the doctors tell you or don't. Hero's protect freedom one war at a time. They protect neighborhoods, put out fires, save lives. HEY how come Derek Jeter makes more cash than my brain surgeon, maybe he should use Derek's agent. Hey god, it's a hell of a world down here. Enough about me, but that's why you come here right. How you doing drop me a line so I know you ain't on the lam. 7:49 PM Thursday, October 27, 2005   You know years ago I was in radio sales. Really it was training for dealing with insurance companies. I have never been hurt on the phone physically. People have yelled at me sure, but I can work a phone like a pit bull. I am generous I usually give my prey at any given time one out of five days off of calls from me each week. I can guerilla a phone with the best of them. PS Isurance still not fixed but I got an extension. Bob 4:19 PM Monday, October 24, 2005   Phew most of the family rage is gone now with some time and space. This Friday I go to my Dr. to get my chemo regimine. No I still haven't started, as per my Dr. I have another long term insurance drama going on still, hopefully to be settled this month. We adopted 2 puppies, brothers from the same litter they rock, except when they have a 2 am urge. Life gets better getting closer to the wedding, 2 new puppies to keep me company during the day, and worse with insurance drama and treatment startiing, I am tired and slow now, being sick on top of that will suck. 11:33 AM Monday, October 03, 2005   10/2/05 Go back to 8/15/05 then read this.... Tear the roof off the sucker….. family parties…. And how to spice them up. It turned out to be one of those weekends drama lovers hang in past the lyrics for intimate details of my history I am putting my side of the story out there for the record… why would I do that because I can here. Tear The Roof Off The Sucker (Give Up The Funk) Parliament You've got a real type of thing going down, gettin' down There's a whole lot of rhythm going round (x2) Ow, we want the funk Give up the funk Ow, we need the funk We gotta have that funk (x2) La, la, la, la, la Doo, doo, doo, doo, doo, doo, doo, owww (x2) You've got a real type of thing going down, gettin' down There's a whole lot of rhythm going round (x2) Ow, we want the funk Give up the funk Ow, we need the funk We gotta have that funk (x2) La, la, la, la, la Doo, doo, doo, doo, doo, doo, doo, owww (x2) We're gonna turn this mother out (x2) You've got a real type of thing going down, gettin' down There's a whole lot of rhythm going round (x2) Ow, we want the funk Give up the funk Ow, we need the funk We gotta have that funk Ow, we want the funk Give up the funk Ow, we need the funk (let us in we'll tear this mother out) We gotta have that funk (x2 Ow, we want the funk Give up the funk Ow, we need the funk We gotta have that funk Ow, we want the funk (we're gonna turn this mother out) Give up the funk Ow, we need the funk (we're gonna turn this mother out) We gotta have that funk (x2) Ow, we want the funk Give up the funk Ow, we need the funk (let us in we'll tear this mother out) We gotta have that funk (x2) Ow, we want the funk Give up the funk Ow, we need the funk EMINEM LYRICS"Cleanin Out My Closet"Where's my snare, I have no snare in my headphones, there ya' go, yeah, yo', yo'...Have you ever been hated or discriminated against, I have, i've been protested and demonstratedagainst, picket signs for my wicked rhymes, look at the times, sick is the mind of themotherfuckin' kid that's behind, all this commotion, emotions run deep as ocean's explodin',tempers flaring from parents, just blow 'em off and keep goin', not takin' nothin' from no one,give 'em hell long as i'm breathin', keep kickin' ass in the mornin', an' takin' names in theevening, leave 'em with a taste as sour as vinegar in they mouth, see they can trigger me butthey'll never figure me out, look at me now, I bet ya' probably sick of me now, ain't you mama,i'ma make you look so ridiculous now...[CHORUS]I'm sorry mama, I never meant to hurt you, I never meant to make you cry, but tonight i'mcleanin' out my closet, {one more time}, I said i'm sorry mama, I never meant to hurt you, Inever meant to make you cry, but tonight i'm cleanin' out my closet...I got some skeletons in my closet and I don't know if no one knows it, so before they thrown meinside my coffin and close it, i'ma expose it, i'll take you back to '73, before I ever had amulti-platinum sellin' Cd, I was a baby, maybe I was just a couple of months, my faggot fathermust have had his pantie's up in a bunch, cause he split, I wonder if he even kissed me goodbye,no I don't on second thought, I just fuckin' wished he would die, I look at Hailie and Icouldn't picture leavin' her side, even if I hated Kim, I grit my teeth and I'd try, to make itwork with her at least for Hailie's sake, I maybe made some mistakes but i'm only human, but i'mman enough to face them today, what I did was stupid, no doubt it was dumb, but the smartestshit I did was take them bullets out of that gun, cause id'a killed 'em, shit I would have shotKim and him both, it's my life, i'd like to welcome y'all to the Eminem show...[CHORUS]Now I would never diss my own mama just to get recognition, take a second to listen who youthink this record is dissin', but put yourself in my position, just try to envision witnessin'your Mama poppin' prescription pills in the kitchen, bitchin' that someone's always goin'through her purse and shits missin', going through public housing systems, victim ofMunchausen's syndrome, my whole life I was made to believe I was sick when I wasn't 'til I grewup, now I blew up, it makes you sick to ya' stomach, doesn't it, wasn't it the reason you madethat Cd for me, ma, so you could try to justify the way you treated me, ma, but guess what, yourgettin' older now and it's cold when your lonely, and Nathan's growing up so quick, he's gonnaknow that your phoney, and Hailie's getting so big now, you should see her, she's beautiful, butyou'll never see her, she won't even be at your funeral, see what hurts me the most is you won'tadmit you was wrong, bitch, do your song, keep tellin' yourself that you was a mom, but how dareyou try to take what you didn't help me to get, you selfish bitch, I hope you fuckin' burn inhell for this shit, remember when Ronnie died and you said you wished it was me, well guesswhat, I am dead, dead to you as can be...[CHORUS] Part one we will start with the most recent and work back and skip around. This past weekend Saturday we went to Heather’s nieces first birthday, it was a nice day tons of food, good family, everything went great. OK the yang to that ying would be the baptism of my nephew on Sunday. We go to the church get the baptism part over and there are all these people I never saw before (more on that in a minute). Well we then move to the VFW where for a month my father who helped 1. Went to war to defend our freedom and that’s how he’s a member 2. Helped build the building from the ground up 3. most recently re-painted the main hall and co-coordinated a complete facelift. I come to find out that the people that I didn’t ever recognize, were my brother-in-laws family that doesn’t come around much because they don’t like my sister (keep that fact in mind for use later). So in the beginning the caterer is doing their thing setting up food tray’s. Then I am eavesdropping because my sister and her husband want to think they are at the manor in West Orange when in fact they just used my father to get off on the cheap via my father. So the big problem is the bucket the beer is kept in, answer me this do men that are watching a football game on a TV anyway care where they get their beer from? My sister is pissed about this fact yells to my brother in law to figure it out, and he replies that my father is simply down stairs only doing VFW stuff, anyone that knows my father knows he does 5 things at once (plus said work to revamp the hall). So at this I won’t listen to. So the only way I can describe the start was, imagine me being a pit bull sitting in a chair and I hate cats, and one walks through my yard. I jumped up and went up to him now exact quotes from here on get a little foggy, so I will lean on the side of the most graphic but maybe there were a few less f bomb’s but I don’t know either way. So if you don’t like arguments and cursing skip ahead, who doesn’t like this stuff? So I open this can of worms by saying how the hell can you say anything about what he is doing and what he has done to get this room together. So I follow him out the front door where the conversation gets heated quick. I believe I told him to f off or something. He replied well f you but the type not directly at me but the situation, but I won’t stop there, he wasn’t going to make a statement about my father and not be told to go to hell as an unappreciative person, this is one person you don’t disrespect in front of me. So back to the cursing. So we are on the front stairs all these people I don’t know are out there now. So I directly told him no F YOU, so he of course had to reply back F YOU so I got in his face and told him come on hit me do it, it will look great. Nothing happened I went down stairs to tell my father all about this crap. Turns out he is on the phone trying to get the ice machine fixed because it literally busted mid-morning, and remember the beer is supposed to be in silver chaffing dishes. The drama is basically over at this point, but I refused to go upstairs, just feeling I had disrespected him at his party not that either my sister or him would know anything about respect. She came down and I apologized to her. She said she had it with “this” family and don’t expect her for the holidays, hey none of us will miss you. Let me do a count for you, you pushed your husband’s family all away thus all the mysterious people I didn’t recognize, and they don’t want much of anything to do with you, your mother moved 2000 miles away, and we are here, looks like you will be doing some flying. We won’t miss you, staying alive is my hobby, sorry. My brother in law came down, but I really had nothing to say at this point, I know him and her disrespect my father equally. So the end of this is they went up had their party and I walked out the back door and left. I didn’t need people whispering about me I don’t think so. I gave an envelope which is all I was really good for. I hope you cash it for my nephew and not your selfish selves remember I am the broke one here. So my sister let’s not let her off the hook because her husband said he just can’t stand her bitching at him as he does everything, changes diapers, drives the other 2 kids around. Gee you should get a father of the year award because you take care of your kids. They are your kids that’s supposed to be what you do. It’s funny because men don’t complain when they are making babies. So if you turned down your invitation that was the first 20 minutes, it was then quiet until my brother in law had to help clean up the hall he cried then too. I was home relaxing boohoo for him. There is a lot more history here but how much you want in one day. But lest you fear not I will unravel my version (yes I will acknowledge it’s my side of the story), time to switch up gears from my drama, to other fantastic family tales. Like the time she pulled the knife out of the chopping block threw it in the sink I lifted another knife, 2 inches out and let it drop back in the said chopping block, 4 cops in the house later, me on the front steps with 2 of them on the verge of literally arresting me luckily I had a witness, I also had 2 friends in the garage, waiting for me to return from upstairs. The word of the day is Psycho, can you say it with me, psycho. I wish my sister would let my father explain to the girls who keep asking why their grandmother moved 2000 miles away, and why they don’t see uncle Bob anymore. But enough secrets for now more to come. I will talk to my doctor on Thursday and hopefully know more then. You are still here just for that I will reward you with my myspace link: http://www.myspace.com/2122040 11:49 AM Monday, September 26, 2005   This Thursday I get to go to my new neuro-onclogist and hopefully get on track with a chemo regimine. Looks like I am doing this regimine orally and can do it at home, that is good news. In other news I still have a decent amount of fatigue, maybe the cooler temperatures will help that. I am helping with a breast cancer walk coming up but in stead of walking I am volunteering, I get real tired sometimes from walking. Thanks to so many of my friends that donated. The big C hurts so many people every year, I start to think sometimes it just won't let me go. I am trying to start to grow my hair back, but I still have bald spots where the radiation was shot in, peachs laugh at me....... 1:15 PM Monday, September 12, 2005   Alright so quick with the medical stuff. I re-established contact with my old neuro-oncologist at UCLA. He is going to review my status butjust needs some more data to do so. So I am pulling together copies of that stuff now to mail out to him. Thursday I have an MRI in New York at NYU. First one since 3/16/05. I had to wait a little while until after my radiation settled. OK here's where I switch tides and don't talk about me (imagine that). OK I haven't kept up with Pearl Jam since Eddie Vedder wanted to be Neil Young. But Saturday on the Katrina benefit, which was supposed to stay non-political, Mr. Vedder had something to say that had me curse at my TV a big F U. According to Mr. Vedder, he thought the gov't should pay for all of this destruction and didn't see the need for donations. I am paraphrasing here but that was his point. Hey keep him in Canada where he was playing. I come to find out today he gets drunk on stage now, and I guess he wants to be Jim Morrison, please he had a brain you jerk off. Then the Foop Fighter's had to jab the administrations reaction time. Now I also found out from (Danny king of grunge) that Bush used Foo songs without permission, that I agree with them on, but this event is not about party politics. It is about helping people I donated what are you waiting for? Our neighbors need our help AMERICANS!!!! Close the borders deport illegals there will be jobs opening everywhere. If gas can go up 50 cents or more overnight how much would wages go up if we forced people to use US Citizens. Think about it, but no party will touch it. Donate something. Close the border before Mr. Vedder can get back, he's so drunk he won't know. Jack Kelly: No shame The federal response to Katrina was not as portrayed Sunday, September 11, 2005 It is settled wisdom among journalists that the federal response to the devastation wrought by Hurricane Katrina was unconscionably slow. Jack Kelly is national security writer for the Post-Gazette and The Blade of Toledo, Ohio (jkelly@post-gazette.com, 412-263-1476). "Mr. Bush's performance last week will rank as one of the worst ever during a dire national emergency," wrote New York Times columnist Bob Herbert in a somewhat more strident expression of the conventional wisdom. But the conventional wisdom is the opposite of the truth. Jason van Steenwyk is a Florida Army National Guardsman who has been mobilized six times for hurricane relief. He notes that: "The federal government pretty much met its standard time lines, but the volume of support provided during the 72-96 hour was unprecedented. The federal response here was faster than Hugo, faster than Andrew, faster than Iniki, faster than Francine and Jeanne." For instance, it took five days for National Guard troops to arrive in strength on the scene in Homestead, Fla. after Hurricane Andrew hit in 2002. But after Katrina, there was a significant National Guard presence in the afflicted region in three. Journalists who are long on opinions and short on knowledge have no idea what is involved in moving hundreds of tons of relief supplies into an area the size of England in which power lines are down, telecommunications are out, no gasoline is available, bridges are damaged, roads and airports are covered with debris, and apparently have little interest in finding out. So they libel as a "national disgrace" the most monumental and successful disaster relief operation in world history. I write this column a week and a day after the main levee protecting New Orleans breached. In the course of that week: More than 32,000 people have been rescued, many plucked from rooftops by Coast Guard helicopters. The Army Corps of Engineers has all but repaired the breaches and begun pumping water out of New Orleans. Shelter, food and medical care have been provided to more than 180,000 refugees. Journalists complain that it took a whole week to do this. A former Air Force logistics officer had some words of advice for us in the Fourth Estate on his blog, Moltenthought: "We do not yet have teleporter or replicator technology like you saw on 'Star Trek' in college between hookah hits and waiting to pick up your worthless communications degree while the grown-ups actually engaged in the recovery effort were studying engineering. "The United States military can wipe out the Taliban and the Iraqi Republican Guard far more swiftly than they can bring 3 million Swanson dinners to an underwater city through an area the size of Great Britain which has no power, no working ports or airports, and a devastated and impassable road network. "You cannot speed recovery and relief efforts up by prepositioning assets (in the affected areas) since the assets are endangered by the very storm which destroyed the region. "No amount of yelling, crying and mustering of moral indignation will change any of the facts above." "You cannot just snap your fingers and make the military appear somewhere," van Steenwyk said. Guardsmen need to receive mobilization orders; report to their armories; draw equipment; receive orders and convoy to the disaster area. Guardsmen driving down from Pennsylvania or Navy ships sailing from Norfolk can't be on the scene immediately. Relief efforts must be planned. Other than prepositioning supplies near the area likely to be afflicted (which was done quite efficiently), this cannot be done until the hurricane has struck and a damage assessment can be made. There must be a route reconnaissance to determine if roads are open, and bridges along the way can bear the weight of heavily laden trucks. And federal troops and Guardsmen from other states cannot be sent to a disaster area until their presence has been requested by the governors of the afflicted states. Exhibit A on the bill of indictment of federal sluggishness is that it took four days before most people were evacuated from the Louisiana Superdome. The levee broke Tuesday morning. Buses had to be rounded up and driven from Houston to New Orleans across debris-strewn roads. The first ones arrived Wednesday evening. That seems pretty fast to me. A better question -- which few journalists ask -- is why weren't the roughly 2,000 municipal and school buses in New Orleans utilized to take people out of the city before Katrina struck? 3:46 PM Friday, September 09, 2005   Finally, I have found a neuro-oncologist all the way up at Columbia Presbyterian. She kicks ass takes names and knows her game. She already has 4 drugs picked out as possible chemo treatments she wrote them down and of course I can't read them so I can't look them up but I am finally on the correct path for the right chemo regimine........ 1:34 PM Tuesday, August 30, 2005   I have my long term disability approved! Yeah the fight is over. Now I need to search NYC for my 6th neuro-onc, because my current one iin NJ just doesn't have the experience to treat me, this is only the 6th search of this kind I have 3 NYC dr's to check ou at present time, so I am busy writing this instead..... I will try to report more on this exciting search, some people can't find good mates, I need a great doc. 11:27 AM Monday, August 15, 2005   I just feel like there are so many pieces pulling and pushing at me at once that I am waiting to hit the wall. And my wall has a first name it's chemo. I won't have any choice at that point to just crawl around and be messed up. I hate being in this place... a stick just ready to snap, cracked.... just han't snapped yet. Yet. 3:19 PM Thursday, August 11, 2005   The countdown to chemo is on... who's excited? For every day I am sick I need a volunteer to get drunk to justify my sickness, most of my friends are to old to drink like that anymore, I said most..... I guess you get these days where it feels like you can't even help yourself. I remember the last time I felt this way, it was around my first re-occurence surgery and chemo. The whole experience can be real isolating. So we self-loathe. The daytimes are very lonely.. Just me and my monkey in my head rattling my cage of how bad can it be? I've been through worse right? right? No one knows and if they do they aren't telling. No one can know. Here's one for ya' it'll make you giggle their theory on why the insurance won't pay is cause I should be dead already, I should have not made it this far. Cheery. If it don't make you laugh at least it gives some perspective to how much time we waste in life, like the time I am buying now. One day we will all run out of time bought like parking meter's the cars either leave on time or get ticketed booted or towed, either way they getcha. I know why complain when you don't have to go to work. But if that would mean my health and not having some nuts insurance company decide whether you are going to be homeless.... I would work, look at both sides of this. My doctors office said after all I have been through how could they claim this? They thought I should have a lawyer fight them, and offered to supply any help I need. My Dr's office RULES!!!! 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 Lou Reed From album magic and loss Magician Magician, magicianTake me upon your wings, andGently roll the clouds awayI’m sorry, so sorryI have no incantationsOnly words to help sweep me awayI want some magic to sweep me awayI want some magic to sweep me awayI want to count to fiveTurn around and find myself goneFly through the stormAnd wake up in the calmRelease me from this bodyFrom this bulk that moves beside meLet me leave this body far awayI’m sick of looking at meI hate this painful bodyThat disease has slowly worm awayMagician take my spiritInside I’m young and vitalInside I’m alive, please take me awaySo many things to do, it’s too earlyFor my life to be endingFor this body, to simply rot awayI want some magic to keep me aliveI want a miracle, I don’t want to dieI’m afraid that if I go to sleep I’ll never wakeI’ll no longer existI’ll close my eyes and disappearAnd float into the mistSomebody, please hear meMy hand can’t hold a cup of coffeeMy fingers are weak, things just fall awayInside I’m young and prettyToo many things unfinishedMy very breath taken awayDoctor you’re no magicianAnd I am no believerI need more than faith can give me nowI want to believe in miraclesNot just belief in numbersI need some magic to take me awayI want some magic to sweep me awayI want some magic to sweep me awayVisit on this starlit nightReplace the stars the moon the light, the sun’s goneFly me through this stormAnd wake up in the calmI fly right through this stormAnd I wake, up, in, the, calm Lou Reed Album Magic and Loss What’s Good Life’s like a mayonnaise sodaAnd life’s like space without roomAnd life’s like bacon and ice creamThat’s what life’s like without youLife’s like forever becomingBut life’s forever dealing in hurtNow life’s like death without livingThat’s what life’s like without youLife’s like sanskrit read to a ponyI see you in my mind’s eye strangling on your tongueWhat’s good is knowing such devotionI’ve been around - I know what makes things runWhat good is seeing eye chocolateWhat good’s a computerized noseAnd what good was cancer in aprilWhy no good - no good at allWhat good’s a war without killingWhat good is rain that falls upWhat good’s a disease that won’t hurt youWhy no good, I guess, no good at allWhat good are these thoughts that I’m thinkingIt must be better not to be thinking at allA styrofoam lover with emotions of concreteNo not much, not much at allWhat’s good is life without livingWhat good’s this lion that barksYou loved a life others throw away nightlyIt’s not fair, not fair at allWhat’s good? Oh, baby, what’s good? What’s good? What’s good? not much at allHey, baby, what’s good? (what’s good? )What’s good? (what’s good? )What’s good? (what’s good? ) not much at allWhat’s good? (what’s good? )What’s good? (life’s good)Life’s good (life’s good)What’s good? (life’s good) but not fair at all 5:02 PM Wednesday, August 10, 2005   I will call / fax / email someone everyday if I have to I will win this insurance battle that you weasles are trying to sneak out on. I guarantee I have more free time to haunt you..... 3:54 PM Tuesday, August 09, 2005   8/9/05 must fight insurance tooth and nail.....hammer and stake.... train and tied to the tracks off the bridge with them.... don't trust 'em.... one bit.... 2:13 PM Thursday, August 04, 2005   The $1000 question is answered. While you are getting tests done for a hospital stay or while there make sure they are in network or throw them out. Hey it's costing me a cool grand don't let it be you. No I don't have it to send them, I am just making "good faith" monthly payments. Hey blood from a stone ya know. 2:04 PM Wednesday, August 03, 2005   I feel like I am juggling 10 things currently. One day your long term disability is approved a letter later it isn't great job they have. The short version as it was explained to me if in the 12 months before you start you see a dr. or start any medication and it is considered a pre-existing condition. Now the company knew about my past, I was the only one interviewed for the job. But let's even forget about me, only for a minute. Let's say you are diabetic, have high blood pressure, insert any number of illness's here ____________ . They have a way out. This is the same insurance company that payed my short term disability without a problem. Now I have to write an appeal about this guys decision, which will be reviewed by someone else. I am also gearing up for my chemo program. I am waiting to get some genetic test's back from MSK for my dr's in NJ. The bills are pilling up any other complaints? OH my ipod died but I got it replaced. Remember this always back up your stuff. If your hard drive crash's your ipod will not send it's music back to your pc. Some kind of anti-piracy crap but now if you are like me and have 4300 songs on your ipod, that's the place it will stay unless your ipod goes poof, then music go by by. love bitter bob 5:16 PM Friday, July 22, 2005   7/22/05 Damn I am tired and lazy. Think of that lazy / procrastinating friend and that is how I feel right now. And I have such a pizza jones right now. Screw all you NYC people right now. Me bitter? No. Just tired and grumpy... and hungry.... I could plead insanity at this point...... 12:05 PM Thursday, July 21, 2005   7/21/05 1 to go. 6 week oral chemo regimine done last night. nuff said. 10:30 AM Wednesday, July 20, 2005   2 to go............damn that headache..... David Bowie Thursdays Child All of my life I've tried so hard Doing my best with what I had Nothing much happened all the same Something about me stood apart A whisper of hope that seemed to fail Maybe I'm born right out of my time Breaking my life in two (Throw me tomorrow, oh oh) Now that I really got a chance (Throw me tomorrow, oh oh ) Everything's falling into place (Throw me tomorrow, oh oh) Seeing my past to let it go (Throw me tomorrow, oh oh) Only for you I don't regret And I was Thursday's child (Monday, Tuesday, Wednesday, born I was) (Monday, Tuesday, Wednesday, born I was) Sometimes I cry my heart to sleep Shuffling days and lonesome nights Sometimes my courage fell to my feet Lucky old son is in my sky Nothing prepared me for your smile Lighting the darkness of my soul Innocence in your arms (Throw me tomorrow, oh oh) Now that I really got a chance (Throw me tomorrow, oh oh ) Oh ho, everything's falling into place (Throw me tomorrow, oh oh) Seeing my past to let it go (Throw me tomorrow, oh oh) Only for you I don't regret And I was Thursday's child (Monday, Tuesday, Wednesday, born I was) Thursday's child (Monday, Tuesday, Wednesday, born I was) Thursday's child (Monday, Tuesday, Wednesday, born I was) (Monday, Tuesday, Wednesday, born I was) (Monday, Tuesday, Wednesday, born I was) (Monday, Tuesday, Wednesday, born I was) 2:09 PM Monday, July 18, 2005   7/18/05 Today started my last radiation treatment week. I will be done with radiation and my oral chemo on Thursday. They say my side effects of headaches, nauseousness (sp?), and tired will get worse before they get better. But I should be getting better in the 2-3 weeks after I finish. Then the chemo regimine. I am not there yet mentally (literally). 9:53 PM Thursday, July 14, 2005   7/14/05 One week from today I will go for my last radiation treatment. I am so tired. I can't even explain it. I still have migraines. My nausea is worse everyday. Other that my life is quiet. I am to tired to get any motivation to make it any other way. 11:12 AM Thursday, June 30, 2005   6/30/05 This is the end of week number 4. I had lost about 60% of my hair from the radiation. So I shaved the rest off. I tell you this big chrome dome is cooler for the summer. I guess I just got to sexy for my hair (stolen quote). Some headaches also, not to much else to report medically. Personal life is still floating at an 11 (out of 10). 3:23 PM Friday, June 24, 2005   6/24/05 This is the end of week number 3 (I have a total of 6 1/2 weeks of treatment). Friday's are a lot better than Monday's. It's kind of like work on Friday you are like good the week is over, but on Monday it's just beginning and hanging in front of you. Generally the side effects are starting to kick in. I get tired, I get headaches, my hair is thining where they are treating me. The good news is they are hitting me where they want to. It is an interesting time to see what happens next. The doctor's and radiologists are really nice though. So throughout the day you have times where you feel fine and others when you don't (yeah it might sound like your life too, but do you have a 6 inch scar on your head to brag about?) 1:49 PM Tuesday, June 14, 2005   6/14/05 I just started week number 2, like staring at a pot of boiling water, if I keep counting the days I will never be done. Everyone at the doctors office is real nice, it's the 5 day a week thing, and that I can't drive myself so this week my father is away and Heather is working an earlier shift in order to take me. We picked our location and date for our wedding this past weekend, we are super excited. Well no real complaints yet on the treatment I will forward them as they come. 11:34 AM Wednesday, June 08, 2005   3rd treatment done, and 30 more to go! My dad has an asst landscasper that picks his weeds - me, gotta earn my rides. I go see my neuro oncologist tomorrew (Thursday). All I can tell people with kids is I can raise great dogs and 2 dogs are perfect. They keep each other company. But when you add that third one, one of them is always gonna screw up the walk and tangle you and the leashes. My point here is that is the closest that I can relate to my sister having 3 kids. I miss my house. Not much else to reprt just checking in. 9:49 PM Tuesday, June 07, 2005   I did my first radiation treatment yesterday. You don't feel a thing it's like a 15 minute x-ray. They say in 2-3 weeks you tend to get tired by the end of the week. I have to do this for 6 1/2 weeks. I feel like I have done it for a while already, it took so long to find a doctor I liked. My right arm has been weaker again. We still hunted halls for the wedding, we are down to 2 which we are taking her parents to this weekend and once we have the hall, and the date and time we can book other things. We just wish we had some free time. Oh and I lost on the dj there will be one. My sister had her first boy this morning at 3 am ( 3rd child ). Not much else to report right now. 2:38 PM Thursday, May 26, 2005   5/24/05 I have decided to do my radiation at St. Barnabas where my neuro-oncologist is and where my surgeon works out of 2 days a week. I got records from the city and Heather copied them for my NJ doctors charts. I got these at my MRI on Friday then I had another MRI here in NJ this week. So tomorrow I go in for a paper mache mask to be made of my face. You see for the radiation they need to have you exactly positioned each time. So they take this cosmic material that start off feeling like a warm towel on your face then by the time it gets cool it is hard (kind of reverse logic, going from warm to cold usually doesn’t stiffen). So this appointment is an hour and a half. Then Saturday we go to see one hall and Sunday 4 more, then I have 1 more so far for next weekend. We are down to 6 places. Thanks for the offer but no band / no dj – kind of jaded on the whole wedding music thing, and I don’t drink enough to dance anymore. 3:59 PM Monday, May 23, 2005   5/23/05 I had good dr. appointments last week so that is good both dr’s at St. Barnabas were very nice and unless this dr in Morristown knocks my socks off on Thursday, I will probably be getting treated there. I am going for another MRI for them tomorrow. I just had one on Friday, but they all like using their own machines and it bills another $2500 for them to my insurance. The money is in the treatment not in fixing you. It is weird my blood numbers have been off recently and I haven’t had any chemo in like 5 months. The radiation program they outlined for me is 6 ½ weeks. I am hoping my side effects aren’t bad. By the end of it I should be pretty worn down which I am aware of will happen. I have had 3 arm seizures in the past 2 weeks so I have a period after each of those where my arm reverts back in usefulness. My doctor increased one of my drugs a little more. Hey something one day is going to take me out I don’t know if it will be my head or the drugs. Every family has a junkie and I have that covered in my family. I know what I have done that most people refer to when they say, “I couldn’t do what you are doing.” It’s not the doctor’s, surgery, or treatment, it’s the lack of freedom and ability to get around for myself. It’s only been 5 months without driving though. My record is 18 months. In positive news, yesterday we went and looked at 7 places and found 2 possible places for our marriage. I know a lot of the venues from djing for 8 years. So I took the New Jersey wedding hall lists and narrowed them down more today. My only major request is no DJ! 4:33 PM Tuesday, May 17, 2005   5/17/05 I have 2 doctor appointments in NJ this week. One with with a radiation doctor. One with a Neuro-Oncologist. And on Friday I go to New York for an MRI at NYU. Then next week I have a second appointment with another radiation doctor. It looks like I will know next week when radiation starts probably right after memorial day weekend. 5:40 PM Wednesday, May 11, 2005   Thank you to everyone for all your great wishes for us. We are very happy right now and it is an exciting time. 10:45 AM Thursday, May 05, 2005   5/5/05 The story behind the last post. So I needed to go to NYU for 2 follow up doctor visits. Heather took the day off to take me in for the appointments. We got into the city around. 10:30 and then went and parked the truck. We went into the office hoping to get done early we brought books knowing that wouldn’t happen. It wasn’t to long for the first visit and we got that done, but while waiting for the second we got hungry. Eventually we got that visit and paperwork done. Now it’s like 3pm and we decided on a quick slice of pizza so we wouldn’t ruin dinner. So we left the city after pizza and joined ever building traffic. Sometimes I run plots in my head. So on the way home we were passing by the town that had Heather’s ring. I figured it would be done so I casually suggested we stop in and try to pick it up. No argument from her of course. So we went by and it was just being finished. We picked it up and I told Heather she wasn’t getting it right away. Truth be told I really wanted something really super, and I hadn’t thought of anything. But you see that’s the difference with Heather she has no airs about her. She is a real person, angel at heart and just wants me for me and this really meant a lot to us to declare our bond to the world so the how wasn’t as important as I was over thinking it in my mind. She is so special and important in my life. So we started driving west again and I was plotting in my head again. How do I give her this ring so it is a special moment for us. Well I figured we should at least have a dinner and eat good Chinese food so we did. Then I directed her through some side roads and got to Tourne park in Booton. I told her let’s go hiking up the mountain. I debated giving her the ring at the restaurant but it wasn’t private enough, or fancy enough. So we hiked up the mountain to the top, and we hiked and got to the overlook, looked out over hills and valleys. Then we came upon a little area that was dedicated to 9/11. I kind of felt like it took some steam out of my thoughts because for me when I think about that enough it makes me really sad and aggravated that it didn’t have to happen. But at the same point it kind of shined a little light on life saying on some level, don’t wait. The time to share life and love is now. So we started hiking back down the hill I was losing my chance but, there was one overlook we passed on the way up too. So we got to it and sat back down on a bench made from a cut tree and looked over hills and valleys again. I was busting Heathers chops I made up 5 questions and then I told her are you sure you want number 6 she had no idea. Funny side note the ring fell out of my pocket twice and she didn’t notice. So the 6th question I said to her “Will you marry me.” Her face shattered and she said yes. I put the ring on her as we both cried and hugged. We got up and floated down the rest of the mountain. She actually believed me that I wouldn’t give her the ring right away. I don’t know how she felt but holding her hand with that ring was amazing. And I found myself looking at her hand and feeling so happy and proud. Heather is so special and she said yes to me. Before we went home we stopped by her house first to tell her parents. Her mom was real happy and her father was happy to. Remember sometimes I plot things in my head. 10:50 AM Wednesday, May 04, 2005   E N G A G E D 4:03 PM 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 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