November 2002 rediagnosed with a recurring tumor I am going to bring you through the whole fun thing
|
|
| |
|
|
| |
This is where you stick random tidbits of information about yourself.
|
|
|
|
Brain Tumor History And Other Rants
|
|
| |
Sunday, January 30, 2005
1/30/05 This is my demon. Oh well. I don't want people to trip out or bug out if I ask them to hold onto things for me. This is what I want if I give you something to hold for me it might be morbid, but it is something I have wrestled with all the frivolous things we have around us. I have always liked to give things to people to make them happy. Hey if I live to 65 and I need the item back I will let you know. Don't worry I don't want to be as old as The Who. I have organized a lot of stuff to friends and I want to pass some of that stuff around. Enjoy it a lot of thought has gone into me giving it to you hoping it will be somewhere it will be used.
12/05/02 - check the year - check out these haunting words I wrote after my second diagnosis - The answer to the most daunting question I think I posed. Because of the fact that this came back this is not a good sign right? And, is this something I am going to have happen again throughout my life. Yes. The end is not near. I will never be healthy out of this stuff. Will I have to go a 3rd time one day, what a year from now? Who knows they just want to get you through this one. Man I have pissed somebody off in this life. I look forward to hearing from Dr. Finlay. He is the stat monster who will report on what my chances are. Hey, I am not a statistic right? Well if I am not a statistic then where the hell do they come from? Of course I am.
1/29/05 Remember when you were 15/16 you knew everything about everything and you would never die?
1/28/05 1:00 am I am so physically drained. I went to NYC today Dr. Doyle my surgeon yes they are going to operate again. I am just shot I mean I knew this is it it is just late and I am exhausted by what I face again. It is a journey I wouldn't want anyone to do. But people do it everyday or chose not to. I don't blame either one's. I lost a year suffering with the last recurrance and I am looking at another year of lock up. This thing wants to kick my ass! My Dr. said if there was no hope in extending or helping the quality of my life he wouldn't do this. So that is why he is willing to open me up. Then I get a month to recover from that then 6 weeks of radiation treatment then. I do chemo again. They figure I am young enough kick my ass. The first tumor relapsed in 3 years the second took 2 years for the current #3 so I look forward to living through a hell of at least a year of kicking still. I aint sticking around for no machines breathing for me and all that by then I will punch my ticket. Will I ever be free of this - no there is no cure and it exists too far back like roots of a tree into the important parts of my brain. This is my roll of the dice
Here is the story of what my operation will be like (it is just like my 2nd removal which I am about to describe):
Well admitting to table to post op what does it consist of?
We get there like 930 am, table time 11am. Fill out consent forms, hey if you want a private room you can get one at the four seasons for your stay, another 200 bucks a night, not covered of course by insurance. I had to leave a 300 dollar deductible check, well at least we got that out of the way for the year! Well no waiting we have been expecting you, go down the hall and see the nurses, oh, here’s your anticipation room have a seat. Nerves not any higher than the next hour I guess. One anesthesiologist comes in, looks at my throat and tongue, asks questions, nurse comes in takes blood pressure temperature basics. Man did you see the size of the binder for me? This isn’t a cavity, we are talking an easy 3 inch binder, looks like the book they sell wedding invitations out of, I hope that isn’t a new instruction manual on how to do this stuff. A second anesthesiologist comes in, this guy is all business, German accent, great a German guy giving me gas! Sorry the best joke I have for this time. Dr. Doyle comes in next, he wants to make you feel comfortable, he comes in with all my MRI films, he puts them up on the window and we look at what he calls the activity area we are going after. Don’t ask me, he could say the good stuff is bad and we would believe him. We ask a couple questions, the German anesthesiologist is at the door watching his watch, he is ready to go. So we leave the room, they walk me down the hall past all these crazy looking machines, turn right here we are. They go jump up there on the table, hey I can still run at this point. Get the hell out of here! I get up on the table they move me up a little, Ed on my right is asking me what music I want, don’t ask me I am going asleep here! At the foot of the bed is a guy up on a platform, so I ask is that the DJ, they said yes he is doing the music and the drinks, I said only I get the drinks here. The 2 anestesiologist on my right start sticking me in my arm for some artery line that hurts, I yelled out ouch, one guy says put him out. Ed puts on Sympathy for the Devil for the Stones, Dr. Doyle loves it he goes you are putting this on? I said am I the devil? The German guy goes here breathe deep as he puts the mask over my face. Breathe deep again, now of course I am being gassed and choking, lights out!
The next thing I know I am being woken up. This is the awake part of the operation. My memory now of it is really fuzzy. I haven’t really wanted to think of it since. They call your name, everything is foggy, you are not totally aware of what is going on, you can only see under this blue plastic hood like a big baseball cap on your head, and you can only see under the brim. I don’t know who but people are talking to me. I see the 2 anesthesiologist under the hood I think. They start pushing buttons up there in my brain to see what will happen. I remember going my ankle, my ankle was literally doing a pin wheel round and round. I think I had some hand motion also, maybe some eye stuff. Again this is really foggy. Then they said ok Bob, we will see you in a little while.
Sorry I know people wanted more on this, but it is pretty much wiped from my noodle, hey if you want that much more on this, go do it yourself.
So I wake up in post-op. I am literally crying. OK I am VERY stoned here and out of it. I was making a gesture over my oxygen mask. Someone pulled it up. I said I am happy I am alive. The guy said of course you are alive. I think this was Ed, because he started patting me on the right side of my head where I had the surgery, and I said hey, don’t hit that side, and he goes, oh it’s fine I wrapped your head real tight. Imagine me now I have my head wrapped like I own a Shell station on the parkway. I then saw my surgeon writing up some notes, probably about me, I hope he wasn’t writing about some one else dammit. So I started talking to him about music, he is a huge music buff. I remember clearly talking about Paul McCartney, and bam my eye started twitching like a seizure. So I called to him Dr. Doyle Seizure. He yelled out to a nurse, they injected me with something else. Then they ordered someone from the seizure office. This happened one more time. I think the old noodle was a little pissed off and miss-firing.
The whole operation was like 8 hours, it took a little longer than necessary. Normally you are basically paralyzed while under so you don’t move. Well I had to be loose for the testing part on my motor controls, so my doctor was using 2 different computer guidance systems. These would tell him exactly where he was in my brain. One of the programs of course was not functioning correctly, and it took about an hour to get that working right, he would not start without both working right. Most of the work of this operation is spent opening and closing. Think about it they have to open your noodle, cut open a piece of your noggin, get into position, wake my lame ass up, ask me 20 questions, cut tumor out, put me asleep. Then bolt back together my skull and staple up my head. A lot of work to get into my head. And yes I do have proof I have a brain. Every couple years I just get a little taken off the top, hey we don’t use most of that material anyway!
They then bring me into post-op nurse unit. I get my own room with a view of Manhattan; it was behind me so I couldn’t see it. I have several lines in my arms, and a catheter in where it counts, that is the worst! At one point the next morning, it was still in and they decided to move me onto a travel bed, my catheter was taped to some old sheet. The nurses gave a pull, and I yelped, wait a minute that is all attached. That was the once and only time women will grip a sheet by my lower calf and pull on my ding-a-ling, I should have thought it was a compliment.
I had the private room for 2 ½ days I was supposed to be moved earlier, but they had no rooms, hey who ever complained about a private room? I went in on Friday January 17th and was leaving on the following Wednesday. You only get 5 days there for brain surgery. That is enough between the none rest and crazy neighbors (see the Michael story I wrote about already). In the private room I had some great nurses. When I moved to a recovery room, I was looking pretty good for a crazy guy with a hole in his head. I think that is the lesson here, stay a little bit crazier than everyone else. I was pretty much able to take care of my self, so you fall quick on the nurse priority scale. Hey you want more attention, play up the symptoms. One thing about the brain stuff is they really keep an eye on you with different doctors coming to check up on you. That is very comforting.
1/27/05 Well my social security form to fill out is a week late (any suprise?) I called them and it is supposed to be on it's way. Tomorrow is my appointment for my surgeon more to come.
Another grain of sand down.
1/26/05 Noithing new to report Heather is a lot better she is till limping a lot but she can eat today tomorrow she will venture out (cabin-fever). I have simply told her godfather style one day I may call on her and need a favor!
11:05 PM
|
|
| |
|
|
|
