November 2002 rediagnosed with a recurring tumor I am going to bring you through the whole fun thing
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This is where you stick random tidbits of information about yourself.
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Brain Tumor History And Other Rants
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Saturday, March 29, 2003
3/29 4 new stories for you!!
Friday in New York 3/21/02
Maureen driving. I was running a fever I packed a bag just in case they wanted to lock me up. We get into the city early get a meter spot and go for a walk. Now I am running a little bit of a fever, and I have been at home sitting on my lazy ass. So walking up 34th street actually took a lot out of me, but was probably good for me. The one huge danger is I knew that my white count was way low. So I am walking around the city susceptible to everything. We stop for lunch in a Mexican looking restaurant that is not Mexican. I get to the doctors office, yeah you have a fever let me tell the nurses. Well from the blood levels, I need another platlet transfusion (number 2). Hey if you aint got the platlets, you will let it bleed. Order up another batch. Put a line in my hand. This batch is taken all from my own type. The last batch which I had a couple hives (a normal allergic reaction). So the hope was that this batch wasn’t going to trigger a reaction. Well they arrive and they hook me up. I get real sleepy from the benadryl. Hey sleep is your friend in this whole experience. When you are asleep you can’t think about your horrors you are living through. Well I start to get the itches on the sides of my abdomen. I tell the nurses. I have several hives appearing at this time. Even my eyes feel funny I am reading and everything goes blurry. Now I feel my arms and legs itchy I call the nurse back in and every where on my body was broken out in hives, beat red like a sunburn. One doctor came in and asked if he could “touch it?” Sure go ahead. I hope this wasn’t the only thrill on his Friday night. Now of course this is like in the 5 o’clock hour and everyone at the doctors office needs to leave. So it appears that my sunburn is fading and they send me on my way. I still felt pretty crappy. They tell me that my doctor will be on call this weekend and if my temperature gets to 101 I have to go to an emergency room and get admitted. I get home return 2 calls. The second to my friend John, who is out djing, but his wife is home and ready to kill their 2 kids. So I decide to hang in there on the phone to make sure she doesn’t follow through with it. I knew that is was totally temporary insanity, and she would regret it. The whole ½ hour conversation mind you, I am melting away feeling like total crap. So I go to bed and fall asleep at like 8 pm (yes my night life rocks). Mo wakes me up around 11:30 to walk the dogs, well I better go again before bed too. I get up when I get back I am shivering uncontrollably. I mean rattling. Everything. I get under the covers and await to warm up. I go to bed with my thermometer at my right and ready to go.
Saturday 3/22/03 - Bob-in-a-bubble
I wake up around 5 am I am burning up. I take my temperature. 101.1. I go back to sleep, or at least try to 6 am I check again 101.3 ok it is on it’s way up, time to call the doctor. I page him via their service. I totally woke him up. He says ok what I need you to do is go to the emergency room and tell them that you are my patient and I told you to come in. I said Doctor I have one question. Can I go to Morristown Memorial Hospital in New Jersey (so I don’t have to drive to NYC, and we were planning on me working with doctors from there). He said yes yes what am I thinking go there. So I grab my bag that I already had packed, we got in the car, and drove to the emergency room.
Do you really care about all these details?
Hey it’s a total trainwreck blog, so you are going to get them, and it makes going to work seem like a cakewalk eh?
So I check into the E.R. They brought me to my own room with it’s own air circulation to protect me from any germs in the E.R. So they send in a doctor, I exlplained my case, he said that they would take some blood and I might have to be admitted, depending what the local oncologist says. This whole time I know I have to be admitted, it is not safe for me in the real world.
A little side note here, with no white blood cells, which I didn’t have I am in danger of everything and all food has to be carefully and fully cooked. This means no eating out and not raw fruits and vegetables.
So they send in the vampires and I am a little dehydrated, so my veins are hiding. They need to put in an IV and get blood cultures (to check to see if there is any bacteria in my blood that could be jeopardizing my health with no white cells to defend myself. So they try on my left arm, they stick the needle in, and burn burn burn, man I know what I IV’s feel like and this is wrong. So she admits that that one did not take. Great here we go again for the hand. Ouch, damn she’s got it. So now she takes those typical little jars to check your blood. Then she has these other 2 clear bottles that look like Coronitas. You ever see them, some Mexican places use these small Corona bottles as salt shakers? I mean the size of like an A1 bottle. She fills both of these ½ way with my good stuff. They are vacuum sealed so I hear and feel my blood bubbling into these, very grouse. The nurse stops in in like 10 minutes after this whole stick and bleed and tells me they have to come back for more. Blood cultures have to be taken from 2 different places just in case the needle picked up some bacteria from where it popped through me the first time. What the hell this is starting out no fun. The vampire comes back sticks me on the right inner wrist with a butter fly needle, and that hurts. He ½ fills 2 more A1 Steak Sauce bottles and leaves. These 2 people are not getting Christmas cards.
OK now it is time to run to chest x-ray, and heck I got to pee. So here I am dangerous to myself. I have to wear a mask when they wheel me through the hallways. Nice. So no big story here go get a chest x-ray then back to my solitary pleasure chamber. At this point it is Mo who drove me here, damn it is a lot of work living with me. And my father. I finally get my orders to be admitted. Now I get driven to Franklin 4, with my mask on and all. The whole time I am praying for a room by myself, after all I am Bob-in-a-bubble, I can’t have another Michael/ roommate. So I get down this hall and yes I get a room with a view, a couch 2 chairs, TV, my own bathroom. This room is a 1200 a month studio apartment in Manhattan probably. So they throw me on the other bed. My day nurse Barbara comes in and asks me 20 questions and what they do is write all the answers right on a paper towel, pretty hip. I guess they run that through a high tech scanner and all the data goes in the computer.
So the plan is to hook me up to 2 different types of anti-biotics through my IV like 3 or 4 times a day to help protect me from the world.
I got 2 platelet transfusions with no reactions so that was good.
Now it is like 12:30 / 1pm, I haven’t eaten yet. Man I am hungry and grumpy. (OK for the record just keep the grumpy theme from this Saturday straight through my release on Saturday the 29th).
I finally get something to chew on for lunch around 2 something. Dinner comes around 5:30 on the floor. I have been clicking through my TV channels all like 30 something of them over and over and over. For anyone who hasn’t been in the hospital let me explain the remote. It has one button on it that says TV. You push this to go through the channels, you can only go up, if you pass what you want to see, you have to go all the way back through all the channels again. Yes it is 2003. Mo left in the afternoon and my father stayed most of the day. So that was most of the fun for my first day. I brought my new book, but in a hospital when you feel icky, and all the lights are examination florescent white, it doesn’t make for a great reading condition to focus in. So with all this great free time, reading was not going to get done.
Each day had it’s schedule. Up between 6-7 am, Doctors rounds in the 7am hour, breakfast would then come around 8:30, also around this time they would come for my daily blood work. They would stick me in the elbow for blood work, I also got stuck in the back of each arm everyday with another 2 shots. I got pricked about 3 or 4 times a day.
As far as weekday TV: 9am Jenny Jones, 10am Maury 11am Jerry Springer 12pm Maury 1pm Jerry Springer. Hey you try to be off work and only have the tv and beat this schedule. You will not. The only gimmick at least one hour a day was always war pre-empted. This is channel 11 dammit, go to CBS for that stuff.
I could really bore you with the everyday detail here. I did manage to add to my own room booty a refrigerator. There were some very nice nurses. I did find that the anti-biotics I was on ended up wreaking havoc on my stomach. I started getting chemo-type nausea again and that was awful. I missed several meals because of that, and ate very little portions at others. I had a bad headache coming on. (I also went through ear infections sore throats, brought on by swollen lymph nodes etc). They decided to let me try perkaset. Now I took these back in 99 around my first surgery, and thought oh yeah they helped me then. So then that night the nurse goes you want 2. I said well I am feeling a bit crappy, and they will help me sleep sure. So I take them, on an empty stomach (a no-no) because the nausea I hadn’t eaten much dinner. I am almost immediately nodding out. This is like 8:30pm. Then I get woken up for vital signs. The nurse told me to breathe deep because my blood pressure was low due to the medicine. Then I get awoken for one antibiotic to be replaced. That goes for like 40 minutes then is done and the machine beeps and wakes me. Then I get woken up again to start the second one. Oh yeah they also took blood from me twice this night to check a level of a drug in my system. Do you get the fact that they wake you up all night in a hospital. Now when I was asleep all was cool. But about the time I was woken up around 10:30 I was peaking on the drugs. I could feel my blood pressure was low. I thought I had to catch my breath at one point. Man I was going crazy I was totally stoned. No self control, and way to paranoid to go to sleep. So I page the nurse. Look I am totally stoned and can’t handle it.
Yes I can make nurses laugh. One nurse at the station said to my nurse go down there and tell him to enjoy it. Well time + drugs = sober and nothing else. So I ate a jello and watched an hour of TV and was down by then and went to bed at midnight.
Again the week was
That is one of my funnier stories I have out of this, I am telling you it was a boring week. Once my white blood count turned around they tend to shoot right up and mine did. A side note when your white blood cells are coming out of your bone marrow, you feel sharp stabbing pains in your joints.
Lot’s of aches and pains, nausea, crankiness, hospital food and popping any pills I could get my hands on. Saturday to Saturday. If you were looking for me that is where I was.
Cat story
I had this apartment, and being an animal person that I am, I decided to get some company. We couldn’t have dogs which I am partial to, but we could have cats. I wanted to get a pair, so they would have company. I searched all over and I found a shelter with 2 black kittens, brothers it was a match. I named one Dracula, and one Mr. Hyde. Well it turns out Mr. Hyde was both Jeckle and Hyde. What I didn’t know was that Mr. Hyde was epileptic, and had seizures. This is before all this brain stuff happened. But maybe I got him on purpose. He used to FREAK when he had seizures, he would jump up in the air like 6 / 7 feet, no joke, then eventually be on the ground just twitching. Dracula would come in and calm him down a little. . The vet gave me medication and I gave it to him every day and for the most part he was ok
After the whole first brain thing, he still would occasionally have seizures. Since I couldn’t drive after the the surgery for 6 months. I moved to Brooklyn with my girlfriend Maureen. This way I could get to and from work in the city and to food stores etc. The point I am getting to is one day we came home and Mr. Hyde was under the bed in a seizure and wasn’t stopping. I don’t know how long the little guy was under there we were out. But I was holding him telling him to stop stop stop. I was watching him and could sense what he was feeling. Man that sucked so bad. I hated that this poor little kitten was out of control and couldn’t stop. That night we took him to one of those 24 hour vet places. They gave him a shot and he fell asleep to stabilize him. I sat with him for like 4 or 5 hours while he slept. Then I went home to sleep for awhile. I came to get him in the morning and brought him to a local vet. I went to work and they called me to tell me that he had gotten brain damage and wasn’t stopping seizures when he came to. I put Mr. Hyde down that day. It sucked.
Anxiety
Anxiety is real anyone who says it isn’t has never had it in their life. For whatever reason things like this can and will make you mental. Of course you go mental. The doubter’s say that anxiety is mental, of course it is, everyone is freaking mental. But anxiety can be so gripping, you can be trying to explain a surgery tale, what a seizure feels like and for me my speech speeds up, I guess hoping when the explanation is over the feeling will be. What does it feel like, I guess a nervousness. You just don’t feel in control, like something is going to happen. It can happen in public also after being couped up a lot after surgery. I remember standing in the shampoo isle in the Cost Cutters, I just felt so over whelmed by all the bottles in the aisle, I just wanted to be home hiding at that very moment it is very overwhelming. I did the same thing the day I came home from the second surgery I wandered around Path Mark alone. You know what a home video camera looks like when someone is walking with it and it jitters, my whole world felt like that. I had loose parts upstairs dammit. And wouldn’t you know it the sample ladies were there and one said would you like to try this warmed up processed crap. I just smiled and shook my head no. Lady you have no idea what my week has been like, no way.
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.
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! Ed puts on Sympathy for the Devil for the Stones, I said am I the Devil, 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 at this point 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!
7:02 PM
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