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, April 06, 2003
4/6/03
some old stories revisited
Back to the city and work for a visit and dr’s
Some days are more eventful than others. Yesterday I went to 2 Doctors. I first swung by work to visit. Welcome to updating a couple dozen people and telling my story over and over. Hey it’s great to see people that really care. Hey and hugs all around! I was a little paranoid about having anxiety when I was there it wasn’t too bad. I had to run over to pick up my MRI’s and then hurry over to my radiology appointment at 2pm. I had to pick up the MRI’s because they were literally across the street from the radiology office and not 2 ½ blocks away. The messenger only goes up the block not across the street. I pick them up, great I have 15 minutes let me grab lunch, I find a pizza place, not the best it will do. I go in order a chicken roll, they heat it up, now I have 5 minutes to eat. No problem I wolf it down. I run across the street. I get there, the guy at the door can’t find my appointment on paper or in the slow computer. Finally he calls downstairs where the assistant is at lunch. They say send me down and I will fill out the paper work. I take the elevator down, fill out the paper work in triplicate. I open the paper. I get called into the back shuttled into a closet size room. This basement place is gloomy. I wait there awhile. Then they come in take my vitals a digital picture, do a couple word tests, and promise me not to long of a wait. At this point I finish my paper, I crank out my book, eventually the first doctor comes to see me. She gets more background information on my asks me questions, checks my eyes and push pull arm / foot tests, she says Dr. Donahue will be with me shortly. No problem we are only 1 ½ hours in here and I have another appointment in ½ an hour never gonna make it!! So at about 4:05 the Dr. Donahue shows up. I think I am the last one. She goes over radiation it seems to be very vague of a treatment just the old stand by so they still use it. It will supposedly put the tumor on hold maybe shrink it, maybe cause swelling in the brain and give me seizures. Keep in mind it is 5 minutes a day for 5 days a week for 6 weeks. When they send in the radiation it gets good and bad cells so you are also destroying good brain cells. It is good to hear all the treatment options but I think I am better off with the heavier chemo treatment than this. I get out of there like 4:40 pm, only 40 minutes late for my Dr. Finlay appointment, I will be lucky if he is still there. Fortunately he is. He waited for me. I go in and discuss my appointment and told him I think I want to go with the chemo and we set up dates to go in.
2nd Removal Operation
1/26/03
Well here we go trying to wrap up post-op I guess I am ready to start tackling this a week out.
For those of you who don’t know getting all the pets taken care of for this 5 day trip to the spa was an event. The fish went to one neighbor. The iguana to another friend, and the 3 cats my other neighbor came and watched them. The 2 dogs they went with Mo to Brooklyn, can you say her mom was thrilled? So with the set up complete, I left for my trip.
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.
As far as risks in surgery, he told us it was like 1-2% but percentages don’t really count. Just assume you are coming out OK, because if you are in that 1,2% it is all bad, dig?
I mean if you are the one that is going to have a problem, it will be all bad. So always go with the numbers that you are going to be ok.
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.
I had several visitors on top of daily Mo dosage, and my father. I played real quiet when I was alone with Michael, I was afraid he would involve me in his hijinks. I really got no sleep while I was in there and was real happy to be going home where I could sleep.
Hey in hindsight I do recommend brain surgery to anybody, it’s a breeze. Skip the chemo stuff!! It’s hell. Hey at least I aint lying to you.
Pre-Second Operation
12/5/02
It’s been great pretty much everyone that knows I told being the messenger of my own gossip, almost just desert for me.
People’s reactions can be strange. Some folks will just stare at you with that blank look. Other people get upset right away. Some hold out and try to be a little stronger longer. What are you supposed to do or say? There isn’t really anything you can say, and unfortunately there is nothing you can really do. Hugs are helpful the physical support. OK, hugging guys can be weird unless you are close to them. Call it what you will. Today I had to tell several more people, more directly all the people I work around. One person broke out crying and left the room, man I can clear a room. She was one of those delayed reactions. She held in there for a couple minutes and then busted out of the room in tears. I tried kicking out 3 birds with one stone telling 3 people at once, it wasn’t any easier than telling the story to one after another after another. In that situation I had 2 deer’s in headlights and one that just stormed out of the room in tears. Wrecking days one at a time is easier. I left work today and said, “Hey, don’t let anything bad happen without me.” It’s the manic clown, or what was Tony Soprano the sad clown? Most clowns are inherently sad I think. Just to get the energy to be up like that you gotta swing down first. It isn’t an easy gig telling people. When they get upset you get upset.
What are you gonna do?
Dr. Doyle called me back today with some facts. Good and bad news, any time you go under the knife is risky. If you can cut out one of 2 operations you are increasing your odds at surviving at all I guess. After further study of the MRI he thinks that only one operation is necessary. That should cut off 2 days in the hospital right there, plus all that extra trauma. Answers to crazy questions come true or not. I could not find out today, hopefully next week I will get that fact. Driving, it’s ok. Check that off the list this NJ guy won’t be totally grounded.(this is pre-seizure activity) Weak probably, I could have increased weakness. In the first surgery it wasn’t really a factor. I had a couple random numb spells, as if they aren’t weird enough. This material sitting on the motor controls is not a good spot to be. Thus the awake surgery that Dr. Doyle wants to perform. Put me under, wake me up, what’s this do, how about this? It should be interesting, and painful. Bring on the drugs, numb me down and wack me out, don’t worry eventually I will remember who I am. Mo will remind me.
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 of tumors 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, everyone is.
What are you gonna do?
Is it reassuring that I am more of a needed case in surgery than other people? I don’t know, you naturally want to put off pain and suffering, but at the same time you want a better chance. Bad cells rarely give you a chance. Bad cells can’t be cut out. You got 1 month to get it all together. One month to enjoy life. Drink it up now. Hey you gonna finish that cookie? What’s life without cookies? It isn’t life at all. It’s a time like this that music seems to come back into my life. Interesting, I was on a talk radio kick for like a year, now it’s like, I don’t want to hear it anymore. I guess there has always been a part of me that is consoled by music. I don’t know. Depressing Dylan, Billy Hector, man I haven’t hit the Cure yet, but hey no one broke up with me either.
It’s all about the positive spin. It’s hard the second time to spin it that way. I don’t even want to go through with this again. I guess on the surface nobody wants to go through this crap ever. But you feel defeated. The first time, you make it through and at the company Christmas party you are the miracle man. No, I didn’t do it on my own, but I fought it. The second time, you fill out the will, just to cover your loved ones, and you are ok if you got to die. You never want to, but it is almost like something in you says it’s ok, you tried. You had 3 good years that still echo’s in my head. What happened to when he told me 5-7 years for recurrence? I guess I am the statistic that makes that more 5 than 7.
What are you gonna do?
When we get it under that Cancer telescope they call a microscope we can call your cells something else I won’t be able to remember or pronounce. Then we can give you more statistics and tell you when you will die. It might be sooner than later. I wonder how the husband of the lady at the hair place is doing (he had a bad case of this crap). They gave him like a year or something, but she is hiding that from him so he will fight. Sometimes I feel I am in the same scenario. But they don’t know enough yet whether I am jumping sooner than later. Hey, I had a good vacation this year, what more do you want?
There is so much that seems to be happening at once and to coordinate. Get your tax stuff together, your bills all together so everything can be found. Sometimes you think it would be easier to walk away and end the suffering than to fight through it and drag everyone through the mud again. But at age 29 they want you to fight it and win. It isn’t the way the timeline is supposed to go. You are supposed to get old and older people than you kick first. When life reverses itself it don’t make it easy on anyone. What are you gonna do?
You think back to the first time, what you went through, was it really that bad? Yes. It turns into an old movie they say. But when it comes back it is like drinking that booze you threw up last week.
Everyone around you will try to help, all of the sudden everyone you know wants to see you. It’s almost morbid. I swear I want to invite everyone to one big last supper and I play the part of Jesus.
Work becomes trivial at this point a lot of times. You get good or bad news, it’s all bringing you to that table. Then someone emails you about some housekeeping crap. Sure this will change the world, I won’t have cancer now! Then a station calls, “Hey, this is Bob your best friend”. Click, Bob the Cancer guy is back. Yin and Yang.
The unknown freaks you out also. There are so many little things that can kill you. A knife in your brain is just one of them, that cab on 42nd street is another. Old age if you are lucky. Some of us aren’t soo lucky.
What are you gonna do?
9:01 PM
|
|
| |
|
|
|
