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
Wednesday, March 19, 2003
3/19/03 I had a Platlet transfusion yesterday. This is a first. To give you perspective with some numbers that mean nothing to most of us:
On 3/14 my levels were: On 3/18 they were: What they should be:
White Blood Cells: 2.8 1.3 2.0 – 20.0
Hemoglobin: 14.3 13.0 7.5 – 18.4
Platlets: 82. 12. 100 – 500
So they started me with my first platlet transfusion. This goes like this, they type your blood and order the platlets from the blood bank. Platlet collection I hear is a bit more hardcore then giving blood. They put a line in each arm and it takes 2 hours. Thank you whoever you are. They hooked up one line in my hand and it takes about 15/20minutes to go in. My allergic reaction was some itchy hives after it was all done. A little Benadryl pill straightened all that out though. I then got 2 more shots when it was done of some growth hormones to help me reproduce blood cells. Ever see the commercial with the guy that didn’t have anymore energy to do the auctions because chemo had his red blood counts down? It’s called Procrit. Now that I mentioned it you will notice the commercial. All this being poked at makes you tired. 5 needles I took yesterday. Usually in the morning time I feel totally tired. My morning inspiration is to get up so I can eat.
Now that my white counts are low I have to be paranoid of infection. One common germ / cold will land me in the hospital until it clears. The rational is that is the few white blood cells you have go to work on this one bug, you don’t have any others to fight even common bacteria. They say this is pretty much the most boring hospital stay you can have. So the general rules no raw fruit, big crowds, everything has to be cooked well. Oranges and banana’s are good because you peal away the skin and eat the center. Apples not so good (damn I have 4 of them). Unless I cook the bastids! So I told the nurses I spent a week not wanting to eat and then when I can now I am too paranoid to eat out. They said yep that is it. If my temperature goes over 101.5 I have to report to the emergency room. Do you know that costs me $100 with my insurance? Can’t we just skip to admitted or something?
Now I also have an in house nurse that is supposed to come and see me to give me a shot every day now. After showing how I reacted like a 2 year old for the nurse, I said, you see I could never do this myself, I would just shoot it on my sandwich and eat it.
I am waiting on that phone call now, can you imagine me with an in home nurse visit, what am I 85 years old?
So to wrap up here I am due back in on Friday. I hope not for another transfusion but we will see if my hemoglobin is low I will need that that takes 2 hours to go in.
5/15/03 There are several sides to this. What I mean to say there is a dark side of depression that comes out also. Understand that there is a network of friends and family that is supporting me. There is also the facet that no matter what someone asks that they can do for me. I have to go through this. Whatever suffering exists physically is mine to take on the chin. I have to say this second trip through this experience is not the happiest time I have ever had to deal with. The surgery part was really painless, and not a problem. Ok I couldn’t get sleep in the hospital. But overall I was in great shape from that. The drama is and I always would be is this chemo regimen. I am a guy who likes to go to work and work hard everyday. Hey I know I am weird. I guess it helps define me and gives me purpose. I have been out of work for 2 months now. The time goes quick. I have at least another 3 months out for this treatment. I don’t mind the hermit like life necessarily but I have lost a lot of freedom. I can not do for myself like I used to at all. In the case of these random seizures they really suck. Sometimes you feel like a shell of who you were. The drugs turn your brain mushy. If you ever go through something like this you will know what I mean. There is definitely a certain detachment to being home alone a lot. Great the dog tells me when he wants to pee. Last week, even fresh air made me nauseas. Who needs it?
The dark side I guess is a lot of self loathing. I mean a quote from HBO’s Oz (It’s not TV it’s HBO). Death doesn’t hurt the dead only the living. That silly little statement meant a lot to me about my situation. I have come to grips with if this stupid thing kicks my ass I had some times to remember. But what it doesn’t do is happen in the right order. Fathers die before their children. It is just supposed to happen that way. When it doesn’t it changes things forever for those left on earth. Girlfriends who helped you fight it. Friends who look at you and go wait a minute he can’t die. He is only a year younger than me, that doesn’t make sense. We were supposed to hang out more. I guess in the big picture you have to remember people when people were alive. Honor them by always remembering the stupidest things you did together that made you laugh. Don’t forget Mr. Bunny, motorcycles, my mustangs, my hair, Billy Hector, and all that jazz.
Where has all this dark silly crap come from? Sometimes when I am alone, I just want to push it all away, turn my back on the torture. Everyone thinks I am so strong. I really see that there are people I can’t let down on this by running away. My surgeon worked his ass off to take out as much bad shit out of my head as possible, twice. My family, girlfriend, friends, and co-workers. Again if we change the order and I punch out because this tomato in my head or a bus runs me over next week. It is hard to explain or justify, how do you put it in perspective? For me I don’t have to fight anymore. I just pass on and out. No more nausea all that shit.
Yeah I had a pretty dark night last night working up all this anxiety and drama. That is why sleeping is great it is the ultimate escape from all the daily problems. It’s great when you can get it.
FYI for the record I am not going to jump off a bridge any time soon. I think of it as a pendulum, I have to deal with these thoughts when they come up. It’s just a rough time, dig?
11:22 AM
Saturday, March 15, 2003
2/21/03 new seizure activity.
2/20/02 Stress level peaking gotta quite this shit. Money, disability, bills, treatment all coming to ahead it seems. The only thing I want to care about is going through the treatment that I have to I realize if I lose it all that is ok with me. I don’t care anymore right now about the house car any of it. I would walk away from it all to get better. The stress of everyday shit on top of this sucks. I peaked last night with yelling and breaking down. I think I am also run down physically with all the snow shoveling and the day of running around the city. Today was a party I was trying to get work done on the computer.
So here I am working on my DJ computer. Mo calls me to call the PathMark pharmacy about a prescription I got wet in the city and it turned to dust. Hey those orange containers are NOT water tight. So I get up from the computer, go the kitchen grab the bottle to the right of the sink. All of the sudden my left eye and mouth start twitching I am like. Get the hell out of here I am having a seizure. I grab the phone and scroll down to MO’s number in the previously called numbers. I do this in my right hand, on my unaffected side. I laid down face first on the hallway carpet. I know I don’t want to fall during this. At this point I can not talk. I get out sei… sei… She says call 911. I am like no, but I can’t get it out. I hit some buttons on the phone. But I am pretty useless at this point I am just waiting for this ride to be over. At this point the dog, and one of the cats have come over to me. The dog is looking at me, like what’s up? The cat climbs on my back and was probably thinking, great, stay right there a warm bed. Cats are worthless a lot of times. As quick as it came it goes away. I call Mo back I tell her it is over, I will call Tom to come and sit with me. The one blessing in these nightmares is that they are not painful. The lack of self control is just scary. Even now to think about it.
I call over to my neighbor in a shaky voice.
I said what are you doing, he says, nothing why, I said can you come over for a little while I just had a little seizure. I walk back to the kitchen counter and pop a Tegretol pill, the thing that is supposed to be controlling this crap.
Tom comes over we walk into the living room to sit down, he starts to ask me what happened, which for the record is the worst, because it brings up a ton of more anxiety that the monster is gonna wack you again. The house then turned into grand central station when you really need some silence. Larry the neighbor showed up. Mo got home. The phone rang, for the first time, it was DJ John. I spoke with him briefly I didn’t mention my event, I didn’t want to go through it again. He sensed something was wrong and asked me but I lied and said I was finr. The phone rang again it was the U.S. Army. I laughed and told them you won’t take me I have a brain tumor and I am starting Chemo therapy, so take me off the list. He wished me luck and I did the same to him. Then the phone rang again, my friend Lenny, again I mentioned nothing to him. To re-explain it is more anxiety that I am not a fan of. Finally one by one everyone started walking out and the phone stopped ringing. . I just want to have quiet and peace, no more phone calls, etc.
This was followed up with calls to the Dr. Pacia. I didn’t get to talk to him but I spoke with an assistant who wanted me to go right for blood work and raise my drug level another 100 mg. I then started to take another 100 mg at night.
Saturday Morning I went to the clinic to get blood taken for the test. I had to wait like a ½ an hour. But I tell you these people are pretty good when it comes to sticking a needle in you. If the person is good you don’t feel a thing.
3rd Seizure
Fast forward a week I am wrapping up some computer work around here, getting a lot done, which I am happy about. I sit down at the machine in my bean bag chair when, my eye and jaw start their twitching. No not again. Yep here we go. I walk down the hall way open the door tell Mo by waving her on. I turn to my left and lay down face first on the hallway carpet, She says is there anything she can do? With my right arm I wave her off. I turn my head left which bugs me because usually it is turned automatically as part of the seizure. I say to myself this is NOT happening I am NOT having a seizure and immediately half the effects stop. That was weird because it wasn’t like my thoughts were even real clear they seemed to be skipping a little during this. But bam, half the effects were gone then I had a little after shock and then I had a sensation of what just happened but I knew it had stopped. The sensations, not painful but I remember my jaw jerking open and closed on my tongue. It wasn’t biting my tongue just pushing it out of the way, and a blinking sensation. I think that was the extent of my seizure. I am now going after this stuff that I can control this monster. I pushed myself up ordered up 4 tegretols and put them back, bring on the drugs that take care of this stuff. That is what Dr’s and drugs are for. When it happens it sucks, the Dr. says that they usually don’t get stronger and says that he has some patients that can control them. When they feel them coming on, they let their body get relaxed which is actually the opposite reaction. And then close their eyes and say that they aren’t going to get it and some people can control it. So now when I think I have a sensation I try to go limp, close my eyes and say I am not having a seizure. Who knows, drink this water it will make you rich, and regular!!
5/15/03 seizure in the car. I am losing track here folks, and that sucks (Number 4). First one since work in public. First one ever in the car! Man some people want to know what did it feel like? I mean let me send rapid out of control impulses that you can’t control through your brain and see how you like it. It sucks. I have said before the only good part is that it isn’t painful. But how annoying is a CD or if you can remember a record when it just keeps skipping? Imagine that is your brain.
Here’s today’s horror story. We are at a traffic light. I get a sensation pulling me to the left. My eyes start pulling to the left. I tell Maureen., “Seizure, Seizure” The light turns green she says she will pull over. Again I talk, “Sei, Sei” Ok talking is gone at this point. My eyes are bouncing left and face twitching on the left side. I have control of my right side. I pull the lever and lower the seat back to lie down. I turn on my left side. I try to say to Mo, “Haaa maaa” what I wanted was her to hold me. In the past I have waved her off to not touch me and let it work out. Now I remember say stop. Tell yourself to stop this. Now remember the CD and record skipping analogy, it happens in your thinking also. I think to say stop in my head but it is hard to get in that cycle to say stop doing this. I think the metal work of doing it actually breaks the cycle and makes you pull out of it. So that is basically it. I pulled out of it, my speech was slurred and I still felt after-shocks I like to call them on my left side of my face. Length of time of the seizure, 45 seconds to a minute. On the way home I really didn’t look around much. I just didn’t want that much stimulation for my eyes after something like that.
9:34 PM
1st Seizure Second Trip
12/17/02
It’s amazing what can happen in the blink of an eye. Sure a lot of people haven’t heard the old war story of my first brain tumor surgery, but will I tell it again outside of this text, probably not. Friday around 11:30 / 12 Lea came in my office. I could sense the visit for whatever reason, we have some business to discuss now that she will be handling some of our services / stations. She was joking of course about adding a monkey to my jungle at work. So the conversation changes to the whole old mess. Which is what I thought she was wondering about. Lea’s been with us for about 3 months. So she wasn’t around at all for the first trip. I started telling her about the first 3 week trip, the new detection, the new awake surgery. I guess my anxiety was kicking up, it’s hard to run through jokes in telling this story.
All of a sudden my eyes start pinning left, and she goes what’s wrong. I knew right away my head was turning left, and I couldn’t talk. I grabbed a pen and wrote seizure with my right hand and she said what what’s wrong I wrote 911, again what what’s wrong. Seizure 911. then I just couldn’t stop or control a thing. Lea yelled for help. And called 911. I just wanted to fall to the floor eventually the chair moved enough and I dropped to the floor, under my desk. The whole time I was awake praying to just pass out to forget what was going on, I was thinking stop turn to the right lie on my back, PASS OUT. Why won’t I just pass out. No such luck. There is no pain to it, in fact I hit my head and didn’t know it. It is the lack of control and the spasms that suck. Imagine your eyes move and arms and head and leg and you don’t control them. You think stop turn back and you can’t. It’s the lack of control that sucks so bad and being aware of it happening that is harrowing. Awake the whole time then I came out of it. My speech was slurred my whole left side weakened by the whole thing. Lea and Lani laying with me on the floor helping me. I tried getting up twice but they told me to stay still. I was telling them phone numbers that Mo was home but shopping. Dr.’s numbers where to look in my palm pilot. Pretty aware considering the mess I got into. Man all I could think was that this changed all the rules. Seizures are no good. No more driving. Going to have to sell the car, man this screws everything up all while I was laying there. People were coming and going. Margaret, Danny, Cathy, I don’t remember who else. Of course I was complaining I wanted drugs and where was the ambulance, call my doctors I wan to go to NYU, thinking they are going to lock me up. And I wonder why I had anxiety? My mind and mouth won’t shut up. Finally 2 medics show up, more on that later. They start asking questions I am yelling out answers who am I where am I what day is it, Friday the 13th of course. Hey they are just checking the awareness of the mental patient. Did I hit my head, um no, but I did I just never felt it. Alright like the movies, everyone clear out. Lea stayed with us, they lift me up into one of those little wheel chairs. Lea’s on the phone, yes, no, well the medics are here now, yes, no. I go who the heck’s on the phone, oh Joe from the building, the other building! Tell him to get off the phone. Hint to all facility people don’t call the scene of the drama with 20 questions it upsets the victim! So I get a few more questions and an oxygen mask. They ask Lea what happened, I go I know everything that happened I was awake. You were awake? Yes I was awake. Then it wasn’t a seizure. Yes it was. Most seizures black out. I know that. I didn’t. OK it’s a partial! We agree. I run through what I can for their report. Keep in mind this whole time I told them I have to go to NYU that is where my dr’s are. Well we are supposed to take you to the nearest hospital, yes that is nice, but I want to go to NYU. Well you will have to sign a form saying you asked for this. Fine whatever it takes we are going to NYU. If it was life or death you would have to go the nearest hospital, it must be my lucky day I am not life or death I can choose. The choice basically was stay at work or go to NYU, so these people didn’t have a choice.
So we get wheeled out past all the on-lookers in the hallway. To my own private waiting elevator. Down to the lobby. Wouldn’t you know it 2 building guys have all 4 doors wide open for me to the street. 2 medics and Cathy and me and people still walk in front of you on the sidewalk. I was very tempted to yell out, don’t eat at McDonalds but I didn’t have the energy. Up out of the chair into the rig. Onto the stretcher buckled in with my O2. Cathy jumps in with me. Cathy rocks for the record. She goes, I am making sure you get to NYU. Believe me Sharon Osbourne could not kick Cathy’s ass, ask her sometime!
So skip ahead a boring ride with an ice pack on my head. We get to NYU it’s a madhouse people all over the hallway, barely getting me through. I hear them say we only heard no life threatening people for here. So, we weren’t technically supposed to show up here? Just call my doctors and shut up!! Cathy went to check me in. They did the old temperature and heart rate thing again.
I am alive and kicking and pissed because I did this before lunch and now I am not going to eat.
They leave me in the hallway next to that big metal button you push to open the doors right behind me, yes we are lined up in the hallway. Cathy returns after 20 minutes of paranoia alone in the hallway, yeah anxiety pretty up there. My left side is feeling like a fatigue from the spasms, back of my left eye hurts. Finally a doctor comes around I tell him the whole story, best line, how long did the seizure last…. Um let me remember the clock said….. I don’t know. 2 minutes is what I came up with maybe it was shorter I don’t know. He says someone is coming from Dr. Pacia’s office as we speak. So I ask him, can I go to the bathroom figuring it would be a production, so he goes yes it’s down the hall. Now I am like, ok I don’t feel too strange. Picture being real drunk and having to maneuver down a ER hallway with people and patients and you are like reaching for stuff because this big boat is swaying. I made it there. Did my business and now I make my way back and run into of all people my father. Big hug, Cathy’s there big hug hey it’s a party! Bring on the drugs.
So here comes the doctor they send from my doctor’s office. He asks me all the same questions again, I said you know I am just going to write this down for you guys. I go through everything and he calls it into Dr. Pacia. Comes back, ok we are going to probably going to send you home, we just need to get some blood work. I start asking him about getting a little something to take the anxiety away. He mentions something about pharmapsycologist some crap. I don’t know. Claims they don’t like to give anything to people because it is so addictive. I just am paranoid and want a little something for the edge when it comes. Like now, Cathy agrees, just give him a little something. My father gambles with the how about if he just drinks a little wine, no alcohol, no driving. No drinking and driving now what do I do? He goes and calls Dr. Pacia still won’t write anything out. Well the vampire shows up to pull blood.
They send me over to a bed area, and out of the hallway now. They said just go wait there and then we will release you. So I am hanging out. I look down the chaotic hallway and who do I see but Holley looking all over for me. Wait a minute she is off of work today. She came into the city when she heard to check on me. At this point I tell her I am waiting to be released. One nurse comes by and goes so we are checking you in. I go no way I am checking out you better check your chart.
So now a 3rd doctor comes around, to this date I have gotten no drugs. I hit him up. He goes yeah, you are right I could prescribe you like 5 pills to have if you need them. Finally we are getting drugs. He writes the scrip and I bust out of there.
There’s the story of the first second diagnosis seizure there are several others you will read about coming up soon.
6:17 PM
For Contacting Me:
6:02 PM
Here's the first run through of what the first 7 days of chemo has been like, I might be adding / editing this but this has some cool stories, not for the weak stomached!!!
3/11/03 First Round of Chemo
If you don’t want details, don’t start this, if you want the whole train wreck read on!!
First day load up the car with stuff. Mo is taking me into the city. Have to be there at 9am. We drive into the city on an icy morning (OK I know enough with the drama). I am setting up here. Crappy roads, lots of traffic you get the picture. We get to the hospital. Mo decides to spend the day in the city (remember it is a snowy icy day, good choice!) I go into the clinic. First they stick a line in me. Oh, let’s not forget I had to bring in my past 24 hours worth of urine. So they could see my kidney function. Very pleasant. That goes to the lab. They decide to get some fluid running in me in the meantime while we are waiting for the lab results to come back. They need to know how much poison to put in me. The nurse was mad at me for not eating, their theory is eat whenever you feel you can because for the next five days you won’t feel too much like eating. So they ordered me a buttered bagel. They kick a little girl out of a room to let me have privacy for the day. Being I am the new kid on the block. So I get this standard room overlooking the city. Nice 21 inch TV VCR DVD combo, have to grab that on the way out. They hook me up to a line of saline solution. I am just hanging out reading my book.
3/13/03 Let’s try to continue this while I am feeling a little better here.
They shoot me up with an anti-nausea drug to keep my stomach quiet. My nurse is really helpful. The social worker comes in and introduces himself to me. This guy can talk I am about to find out.
So he starts to go through his whole rap. This guy is helpful for services like trying to figure out your benefits to psycho stuff. So straight to the juice here, the guy lays out when you can and can’t have sex, how, and masturbation times. Go figure! So if you want to know now I have a cycle similar to a woman. The first week of chemo you don’t want anything to do with anything because you feel sick. The second week you need to get your blood levels. If your platelets are low no self-pleasure. He doesn’t get into all the reasons. If your red counts are low no nookie nookie. Whites low you will be tired and not want to. It’s all about the blood counts! Hey do you really want to know about all the boring stuff, no. So he splits. The doctor has a great nurse practicioner that comes in. Explains all side effects possible to me, gives me some new prescriptions. We are talking I am walking around with like 10 drugs through this whole thing. In between my visits I am taking in fluids through my vein including CarboPlatin a chemo drug, and reading a lot. Oh and don’t forget the gatekeeper. The receptionist at this doctor’s office is not the friendliest woman in the world. So Maureen goes to visit her old job in the city (while it’s snowing none the less), while I am getting my junk. She comes back at one point and is sitting in the reception area. Unaware that she can just walk right back. She asks the receptionist about my status, she asks someone and says he is going to be like another hour. Never saying go back and visit. She is a character, but I am working on her.
So the day is up they let me leave. I am feeling pretty good, maybe all the fluid has my blood thin, I am all dopey on the way home to my girlfriends parents house. For those of you who don’t know I live like 60 miles out in the styx of New Jersey, so the plan was to stay in Brooklyn for the night because we had to be back in the doctors office in the morning. So we get back to Brooklyn, still feeling nothing, I eat some soup, and bread for dinner, a meal for any king right? Now just like the day before I have to collect my urine in a brown jug! Yes, so I warn her sister that the brown jug in the bathroom is not iced tea. I start slowly melting it seemed by like 8:00pm. Now I have to take 5 pills which are a second chemo treatment (Tamadar) I am taking also, for five days. I take the pills and Zofran which is an anti-nausea pill. Also I take 3 pills of Tegretol an anti-seizure medication I have been on for like 3 ½ years, since tumor number 1. Yes 9 pills, ok we are all on the same page (I now have a pill box thingy of plastic with 28 boxes, I know your are jealous, no I am not 100 years old). I fall asleep, I wake up, man my tummy hates me. This theme goes on for the whole night when I wake up. My tummy HATES me. Yeah, this is the good stuff I read about the nausea stuff. Finally I watch the VCR clock it’s like 5am, and I know I am not going to sleep feeling this.
I kept a mantra going all night, like counting sleep, “I am not nauseas.” Hint number 1: You can’t lie to yourself about this stuff. So about 5am, I make a dash for the bathroom with my faithful waiting bucket. If I had cookies I would have lost them. So this is it. I am a chemo pro, sick for the 1st time. I go back to bed feeling some relief, hey there’s always calm right after the climax right? And I took a peppermint mint out of candy jar, hey, peppermint is supposed to help with feeling nausea right?
I lay there and the wave of nausea slowly builds back up. At this point, Maureen’s sister is getting ready for work and her mother has headed to the shower. Now I am thinking where can I go to be sick. I mean come on you just want to be alone in this condition. So it happens again, I go running into the hallway next to the entertainment center, on all fours, what a sight this is in the dark! Oh and the peppermint did improve the taste of the second sickness! (I just wanted to tie in the mint’s usefulness).
It’s 5:45 Maureen hears it and comes out. Looks in the bed, “Where are you?” And spots me on the floor with my faithful bucket. I am a mess, literally. You ever get sick from drinking and when you get sick you go, I am never ever, ever going to drink again (the Drunk prayer). Keep that in mind for the next part. I am basically freaked. Tearing up, crying, snoting up (not my finest hour here). I start telling her, “I am not going to do this. I am not going back there today, I am not taking these drugs anymore forget it. I can’t take it I have been feeling sick all night. I don’t care, I will take what I got left, I can’t live like this. Man I was not a happy camper. So I am sitting there on the floor and her dad walks by from the bathroom, he looks over, “Is he alright?” he says. Maureen says yeah he’s just sick. These are some damn crazy times. Yes this all took place in the first 24 hours!!! So Maureen is telling me to shut up and she is going with me in the morning to tell the nurses that I said I was quitting. For those of you who don’t know, you don’t win a fight with this woman, or with many women for that case, but with Mo, you NEVER win.
So I take one of the anti-nausea pills, after much arguing that nothing in the world could possibly stay down. I go in to the bathroom to wash up, brush the teeth. Believe it or not the thing kicks in fast. I come out of the bathroom and I am hungry, where’s my Brooklyn bagel. So we pack up and leave for the Doctors office for round 2.
I get to the doctors office, Mo is with me. The nurse asks how my night was, I try to give the cliff notes version of our fearful patient here. She continues to apologize, heck it aint her fault. They draw blood, take the pee bucket, and hook up more fluid.
I see the social worker again. Hey the guy just shows up and I am sitting there alone and tied to a line, so I am a captive audience. He starts by telling me that he wants to make sure that I am aware of a particular side effect. Hair loss. He goes it is one that usually doesn’t show up with your drugs, and we have played it down in the past. But of course they had a 17 year old girl going through this and BAM all the hair came off of her. I told him I was aware of it, and hell I don’t care.
Now this guy can go through all sorts of psycho babble stuff also, and keep in mind I aint feeling to hot. He starts going through well you are a strong person a fighter the whole yard. I am feeling like hell, he means well all that stuff but hey, I am a big pile of crap right now.
Needless to say I tell my story over and over for like 3 or 4 different nurses. Another day of fluids and drugs. Now we go home to Jersey (insert joke here). I am Feeling kind of crummy. It’s 5pm so traffic is nuts we are talking a nice 2 hour commute. Hey, I usually work in the city, now Mo can see the time I put in both ways to and from work.
I get home and it’s rest and pill time, still feeling crummy (you will see this theme continues from Friday, all the way to Thursday of the following week at least.
The whole weekend I feel like a pile of dog doo doo and basically do nothing but read and breathe and shower once every 24 hours, hey at least I did that. Monday I go back to the doctors office for some more fluids, because I got a bit dehydrated over the weekend.
They bring me in and first things first they take my temperature, blood pressure and weight. Hey ladies, 3 pounds I lost the first weekend. You jealous yet? Yep when I am done here I am inventing the chemo diet, you will not eat!
They hook up a new line. They pump me the whole day full of like 4 bags, damn I am not a fish. Maureen dropped me off and went to Brooklyn to avoid parking costs. They tell me to call her, and then I tell them I am really feeling crappy so now they want to stabilize that. I get a couple new prescriptions.
Mo meanwhile thought I was going to come down stairs and meet her, but of course I am now fetal position up stairs, with no where to throw the car, she throws it in the lot (man they suck, over-charging-money-taking-bastids). She comes up and I explain they are just trying to get me feeling better. So again we leave in rush hour, another great commute. Another night of pills and nausea, hey you were wondering.
Tuesday, Wednesday, Thursday all pretty uneventful. Feeling like crap, I actually got back into the TV thing a little. Now for the record the only good thing on TV during the day is the 4 hour block of Maury, Springer, Maury and Springer. Stay home for a while and you tell me. Hey I even watched Cable Guy, how bad is that? So a whole lot of doing nothing but hating my tummy, even fresh air made me feel sick. So staying inside was my friend. What could I eat, not a whole lot. Jello, soup, toast, banana’s, rice a roni, now here’s the problem with feeling sick for a week. Some things that you ate already while you felt like crap but you force yourself to eat, you don’t want to eat again. The reason being is the last time you ate them you felt sick. Again back to the alcohol thing, a lot of people never go back to that certain shot they drank once and got sick on. So as the week wore on food choices got less it seemed. I mean one day I ate a fruit bowl of peach apple banana and kiwi. I tried that Wednesday morning now check it out, I wake up wash up brush my teeth the whole thing. Yeah fruit bowl that will taste great. I peel and wash a kiwi, apple, peach, and banana. I sit down with my fork take a piece of peach and I feel a burning pain like a knife going down the inside of my cheek down my throat. What the hell? I try both sides of my mouth, same thing. I call Mo at work, hey every guy should send their woman to work, and stay at home (look what I am going through to stay at home). She says yeah call the nurses. So it is like 9 am and the nurses are just getting in. I call up, I get the gatekeeper, and ask for a nurse, she finds one, I describe the sensation. She goes it is probably a mucus reaction something or other, do you have bumps in your mouth, I feel around with my tongue. Um, no, she says well the banana is good but don’t eat the other stuff. Great seal up the tupperwear and there goes breakfast. I am sick of bland stuff. She said she would check with the doctor and call me back with any suggestions. So breakfast was a wash.
Now this week I also set this thing online up. I was just writing all this up for some future use. Sure I could have a best seller, people reading of my health train wreck, right. So my boss mentioned it before a blog. I was like what the hell is that. So here it is. With a lot of time on my hands and a bunch of encouragement, Holley convinced me to put this up.
Now it is Thursday night and I am due back at the doctors in the morning, now the blood levels get checked. Let’s see how chemo is going to wack my blood systems.
5:58 PM
Thursday, March 13, 2003
In the near future I will be posting what my first round of chemo has felt like. The following is a transcription of a doctor's appointment where my neuro-oncologist explained my plan for chemo:
I went over your slides from 1999 and from your most recent tumor. The tumor from 1999 was a pure low grade Oligodendroglioma (these tumors arise from Oligodendrocytes, a type of supportive brain tissue. They most frequently occur in young and middle-aged adults but are also found in children. Pure Oligodendroglimos are rare. Mixed gliomas, tumors containing both Oligodendrocytes and Astrocytes, are far more common). The tumor now is the same tumor as in 1999, but it is now more aggressive. It is more cellular, and there is more stuff/density in there. There is mytosis, cells are clearly dividing. Special stains can quantify what proportion of the cells are dividing. When people argue whether the tumor is low grade or high grade, they look at the MIB 1 number to see if it is greater or less than 10%. If it is Greater than 10% the tumor is more aggressive. Your tumor is around 15%, resulting in more than 1 out of 10 cells are dividing. Special stains still show that it has this neuro nerve still. So we would still call it a Ganglioglioneurcytoma (formed from ganglia type nerve cells). The way the cells look more irregular, more unusual, more dividing, we add the label Anaplastic or malignant. The purest using conventional statements would call it Anaplastic-Oligodendroglioma. We would call it an Anaplastic-Ganglioglioneurocytoma. There are more institutions using this nomenclature now. It doesn’t bother me either way. The fact is that it is a malignant type process. So just putting you on something simple like (some drug name inaudible) is not going to be sufficient. I have arrangements still to go for a second pathological opinion. But having seen it under the microscope I am sure they are going to agree that this is an Anaplastic tumor. If you remember we talked about some options. We expect the report to be an Oligodendroglioma tumor. We know a lot about Oligo tumors. The oligo tumors are more responsive to chemo treatment, so much so that we actually are treating newly diagnosed Oligo’s with chemo with the intent of avoiding radiation therapy. You are a newly diagnosed because you are previously untreated outside of surgery. We know we can do it because doctors have been doing it at major centers in North America for about 8 years now. Nobody’s conducted a randomized trial where if you say you treat half the people with this intensive package of chemotherapy w/out radiation as opposed to giving radiation with Tamadar (a lesser chemo drug used in conjunction with radiation), whether 15 years from now will one group have a better survival rate than the other group. Will one group have a better quality of survival? Nobody’s done that because there’s no where near the time. We are still trying to establish things.
There is now question that if you go to a good majority of brain tumor centers in this country, centers that focus on this, they would say at this point you need to get radiation therapy. Some would say radiation therapy with Tamadar. Others might say the old fashion way. Use the old fashioned, that is proved in the literature (the real purest) use PCB (Procarbazine)(the drug that Tamadar is replacing). Some would say the PCB then the radiation. There is a study that is being conducted; we don’t know the results yet. Where malignant Anaplastic Oligodendrogliomas like yours, where you would be eligible because you never had chemo. ½ are getting radiation followed with PCB. The other ½ PCB first and then the radiation. It looks as though there isn’t going to be a major difference. What they didn’t do is ask if getting PCB followed by radiation therapy is better than radiation alone. They decided that the data was sufficiently strong for chemo therapy, that they should all get chemo therapy. So I don’t think it is terribly exciting thing. The only issue is if you get chemo therapy first you leave your options open as to whether you go with radiation afterwards. After 3-4 months of chemo therapy you can go with radiation, or high doss of chemo and stem cell rescue. One group of people say you should go with radiation therapy followed by Tamadar or with Tamadar. Others might say although the study isn’t done, said PCB first then the Tamadar. What we have been doing is using a more aggressive approach that is to go with Carboplatin and Tamador rather than the PCB for 4 months / 4 cycles. Then after that hit you with stem cell transplant rescue. It is not that you buy into a whole strategy / package where if you start this you must go do that. What we do is give the Carboplatin and Tamador for four cycles / four months. Then we look at the scans and say ok should we go through the stem cell cycle for one big bang cycle or should we go with radiation and call it quits. Or should we go with or we have done with some patients that have residual tumor let’s go with radiation and an oral simple Tamador (chemo drug). So there are a lot of options and by delaying the radiation you keep the options open. There are no questions that chemo therapy approach upfront is more labor intensive and can wind you up in the hospital. Many of the patients haven’t. Wouldn’t you know we had an adult in his 30s and a girl at 17 start 3 weeks ago. And despite telling them how people seemed to sail through marvelously. Both of them winded up in the hospital for about a week. With fever and low white blood count they weren’t particularly sick. The 17 year old spent the week being bored in the hospital. So those things can happen. It is more labor intensive. You don’t need to make this decision today. What I want you to do is meet with the radiation department. Dr. Donahue. I think you need to meet with her to discuss what the risks are to you cognitively, intellectually, functionally of radiation therapy. I think you need to hear that to make a decision, about whether you want to try to see if you can avoid the radiation therapy.
Let me tell you what my recommendation is. And unless Dr. Donahue can really turn around and say that this is such tiny area and a tight field that we can give you a tiny focus of radiation therapy we can spare damage to the other hemisphere. You don’t have to worry about intellectual damage, unless she can convince you of that. My recommendation would be to go with the chemo therapy dose with Tamadar and Carboplatin for 4 cycles. We looked at the post-op MRI on Friday we do believe there is some residual tumor he wasn’t able to get some of the tumor. So that flair is some tumor still left. So we will be able to see how that responds to 4 cycles of treatment. And then we can make the decision as to if we want to go through with the big bang one. And by this time, I will give you the numbers of some young people that you can talk to find out what it was like to go through that. And you can help formulate your own decision because there is no right answer. As much as I am supportive of the concept of trying to avoid radiation, I do it I have been involved in developing it. So I can be said to be biased. But I do recognize that there is no absolute right or wrong answer. Yes it would be wrong for you to turn around and leave and say see you in 6 months. That would be wrong. This thing decided to grow and even though it took 3 years to grow. It is not going to take 3 years to grow back now. There is residual stuff there. It is clearly a malignant tumor now. It is not the most malignant tumor. If you read in the books of the horror stories of glioblastoma (grade 4 tumor). Tumors can transform eventually to become that malignant. That is why I want to treat it aggressively. So my preference always it to keep your options open, keep your doors open. Go with intensive chemo therapy with for 4 cycles. Avoid the PCB because although it is easier to give it is more nickling cumulative toxic. So I would go with the Tamadar and Carboplatin and as I said we could sit down with the scans after that and make a decision to go with stem cell or with radiation therapy. I even have a couple patients a 27 year old patient who had a very infiltrated Anaplastic Oligoastrocytoma which was spreading through both frontal lobes. There was no way in hell she was going to go through radiation therapy; it would have blown her out of the water. So she went through Tamadar Carboplatin, but for various reasons that don’t apply to you, she had a totally unrelated blood disorder. Which might have been adverse to going through stem cell transplant, so that wasn’t a risk of going through. So basically after 4 cycles of Tamadar Carbo, she just went on oral Tamazar and all medicines without hair loss she goes to work. And she has been on that stuff for the past 2 years and she has no sign of the tumor growing. So that is another option to avoid the radiation. In your case I don’t think it is necessary. It is in the non-dominant front. It is very small I think it can be gotten with a very small focused radiation something we don’t have here something called I M R T Intensity modulated radiation therapy. This is the newest thing in focusing we will be having this in the next few months we were supposed to have it for the past year now. Dr. Donahue will be very honest with you she will pre-empt it if she feels you could benefit from it she will say this could really be treated with IMRT radiation, but we don’t have it. I have a colleague in Long Branch that has state of the art radiation. Radiation is 5 days a week for 6 weeks it which is a possibility, but we are not there yet. The first thing you need to do is see Dr. Donahue. Tell her you were referred from Dr. Finlay 212-263-5055. She will receive an email from me on the subject.
In summary this is clearly an Anaplastic tumor Anaplasic Oligodendroglioa. They tend to be really sensitive to chemo therapy. That is why there is this new strategy to try to cure them without the need to resorting to radiation. The other advantage is in case this damn thing did recur and became a higher grade. At least you haven’t shot your wad so to speak and you have your radiation therapy sitting out there as a potential if it became more malignant. Once you have radiation and you fail you can not be re-radiated with an adequate dose again short of getting a little focused gamma knife. So there are advantages in delaying radiation. But again if you opt to go with the chemo therapy first as I recommend the decision is still there open for you to get radiation therapy or transplant therapy or even simpler low dose chemo after that. The drugs as I mentioned Carboplatin Tamadar are not experimental drugs they are well established. During the first four months it is mainly labor intensive. The blood counts drop. The first 5 Days you do feel fatigued. Do you remember I told you it is given as 5 days of pills, and the first 2 days you come to the clinic to get chemo therapy through the vein. And I wouldn’t put it in a catheter you have good veins. The risk of infection is slight, but it can happen most of the time people get through the first cycle with no problem but we just had 2 patients that didn’t. We just checked with the pharmacist over our past batch we just had the 2 patients end up in the hospital with low white blood cell counts. We were very surprised to see that. They weren’t desperately sick or anything it was actually pretty boring for them. They needed platelet transfusions. Those are given in the clinic here. You may need to come to the clinic 2 to 3 times a week. We are not in a major emergency to start this and then we need to sit and talk this week or next week see Dr. Donahue then we can sit and talk. Then we can finalize it. My recommendation is to go with the Tamadar. If your decision is you are ready to go for it. We give you plastic jugs to collect your urine for 48 hours. Bring in jugs Monday morning we put an IV in calculate the dosage here you are here for 4-6 hours first day. Collect 12 hours of urine. You also take pills of Tamadar for the first 5 days you get anti-nausea pills for at home. If you don’t react well to it we will give you some fluids extra strong anti nausea pills but it is not usually necessary. And then you will come back a week later for blood counts. We will talk more in detail about that if you decide to do that. In order to minimize the affect on the blood counts, we teach you to give a shot under the skin of a medicine that is a natural growth factor (not a drug) that your body makes naturally, just not enough. It’s called GCSM you take a shot of that each day and it stimulates the white cells to recover faster. That has revolutionized the treatment of cancer recovery it doesn’t prevent a drop in white cells it just helps them recover faster. I don’t know if you are freaked out about giving yourself a shot, it’s quite simple the nurses teach you how to do it. It’s just under the skin. We also have a growth factor that we use that can stimulate the platelets to recover faster also. That’s once a day as well. The growth factors we give you reduce the side effects. It’s a labor intensive regimen. If you are feeling up to going back to work no one is going to stop you. Especially that first week you will be pretty tired and nauseated, but we will give you strong anti-nausea pills. But again we have treated about 25 people with this regimen with Anaplastic (more with Glioblastoma). We see people with big enhancing mass’s that shrink down. We only have to do a minimum on you not too much of a job. Again it is a lot to throw at you. I really think you should talk to the radiation department because it is a very standard approach that will be offered to you. Going with the radiation therapy, along with the oral Tamadar which will be far better tolerated. I can’t tell you which one is better. The only issue is what are the risks in the radiation therapy with affecting your attention, concentration, focusing and performance. You need to hear it from the horses mouth the radiation therapist. If your time is more of your own in terms of when you show up on your own. The second or 3rd week you will show up for a blood test and maybe a transfusion, which will take 4 hours of the day. The first 2 days of the cycle you need someone to come with you. If you are feeling ok come in on your own. If you are having a transfusion you can come in on your own. If you get started with cycle one first week of March, April, May, June. Then the option is to do radiation therapy 5 days a week for 6 weeks or stem cell for 6 weeks with 3 weeks in the hospital and 3 weeks out to recover. Either way it will be 6 weeks June July, for sure no reason you shouldn’t be back around August. You have a lot on your plate you have a tumor you want to try to get it right the first time. I think it would be best to plan not to go to work for first four months. If the decision is to get radiation therapy rather than stem cell transplant I think you managed to figure out that you could get radiation and indeed go to work, although radiation is a drag.
For chemo you would come here for the first 2 days. You would give Me Tamadar morning and evening Monday Tuesday Wednesday Thursday and Friday. Pushing yourself to drink fluids and would stay in touch with me to prescribe strong anti-nausea pills if you needed them. Then they would see me the following Tuesday in the clinic. If you are not feeling crappy they might not see you until the following Friday. The counts don’t drop immediately they take about 7-10 days to drop. By that following Monday or Tuesday. I bet you would be up for your first blood transfusion. It is a bag, which we won’t know until you get your first blood count. We could work with you to locate a local lab. The problem there is they usually take a day to get the results here it takes 5 minutes. But we will try to use the lab see how it works. We must have the results by the end of the day to see if you need to come in for a platelet transfusion. Platelets are given in about 15 minutes but it takes an hour to order them. Red cells take longer to get a cross-match about 3 hours. Platelets take longer. You wouldn’t have enough blood to donate to yourself. Chemo is done for in those 5 – 7 days. The pills you take are Tamadar for 5 days, IV is Carboplatin for 2 days. After those 5 days you wait for the affects to kick in, low white or red blood cells, hemoglobin, platelets. Then you recover for about 2-3 weeks and then we repeat again. 2 days of Carbo, 5 days of Tamadar. This is the highest treatment. Highest is always the best especially for a chemo sensitive tumor like yours and we can alter it. I certainly have people that have been through this treatment that are 4 years out without recurrence. What are the chances we can cure this? I can tell you this you are a young guy and have at least a 50% chance of being around without progression of the disease 7 years from now. Now that’s fine if you want to live for 7 years and not if you don’t. This is with radiation therapy. We got to do our best. I don’t know what the expectations are if this is going to be lower with a more intensive approach. I am recommending the more intensive approach. But you are an adult you have to decide if you want to this. It is not a matter that I have the final say here. Talk with Radiation, your father, whoever else you want to discuss this with. If you come to me and say I would rather go with the radiation therapy right now, with a simple low dose Tamadar. I would support you because I can’t tell you I don’t have hard data to tell you otherwise. The last thing I want to lay this on you that is rubble. I have been trained for 30 years. So I have given my recommendation. But you are an adult you are entitled to your opinion. I would respect if you said you wanted to just do radiation. And I would treat you for it. Think of it as 2 packages the 4 cycles and based on it’s response to chemo do we want to do stem cell or radiation with Tamadar.
12:22 PM
Ok so this stuff won't be in total chronological order of the whole experience, but you should enjoy it none-the-less.
Here are a couple great hospital stories:
Greatest hits:
2nd Trip
When I get to a shared room I am sharing with this guy named Michael. Same age as me just a lot worse shape. During the day his mother sits with him, he doesn’t say a word. She talks with him and begs him to get better and to be nice or she won’t come see him anymore. They go through the TV which they keep on 11 all day their TV is louder than mine dammit, turn that crap off. When his mother leaves at night it is party time for Michael. The hospital robe and sheets come off. The nurse comes in she says Michael you have to keep your robe on now you have a room mate now. Keep in mind I am being silent because I really don’t want Michael to know I am here. He says to the nurse, “No, I like being naked!”
She replies if you don’t keep your robe on I will have to put you in restraints.”
He says, “No you won’t.”
It is funny but not funny. One of the nurses assistants comes in with a new robe for him, I said to her on her way out.
”I didn’t know it was going to be that type of party.”
She got a laugh out of it. When she went back over he asked her the kicker.
“When are you going to suck my dick.”
She says, “I am not that type of girl.”
These women have seen and heard it all and are not going to take his shit. She looked over to me laughing. Man it can be a lot worse. But again the shit only hit the fan when mom wasn’t around, or was it when the sun went down, I am not too sure.
Michael is the source of a lot of material. The sexual request was repeated several times during my stay. This would freak out my girlfriend and guests alike.
Michael wanted food all the time. But he couldn’t really feed himself. So they would bring in his food tray and then he would have to wait for someone to come feed him breakfast and dinner, usually his mom was around to feed him lunch and sometimes the other meals.
I would hear, ”Room Service, I am hungry.”
And sometimes this was after he ate he wanted more food, they weren’t giving him much and it was a lot of jello and stuff, and a lot of medications make you hungry.
Nurses can range from one that is awesome. My first 3 nights I stayed in ICU only because they didn’t have a room for me which was ok, I had a private room with a great view, although it was to my back, all my guests didn’t have to stare at me, they could always look out the window. The nurse I had the first 3 nights was really great. Nice and attentive. I mean I was in good shape don’t let me fool you. I didn’t sleep much and by 5am I just gave up and stayed awake. The first morning I had been up since 5am. When my visitors finally came to see me at like 1130 / 12 I yelled what took you so long. I had been sitting there alone with no TV, not that I cared there. No phone, nobody to talk to, I was bored. The daytime nurses wanted nothing to do with me. I really didn’t need much attention. The woman I was really nice to was the food lady. The first morning she was like an angel to me, wow food, I hadn’t eaten real food in like 48 hours. Keep in mind this angel was one stocky black woman, just trying to make it through her day. But I also wanted to be on her good side, she controlled the distribution of my breakfast and lunch. She was very important to me, you don’t piss her off!
The surgery wasn’t that crazy what I hated was that damn catheter. They kept that thing in till like 430 the next day, I had to go to an MRI with that damn thing in, totally not fair. Finally the nurse took it out, poor her, I was totally paranoid about the removal of that thing, I hate that thing but I think all guys do.
1st Trip
I really wasn’t there that long to get too many stories last time I was in for 3 weeks that had some boring times some stoned times, it ran the gammit.
I remember I had to do a test for brain mapping. What they had done was a 2 surgery process. The first surgery they opened me up and put a grid in my head. Needless to say I had a group of like 20 some-odd wires coming out of my head, pretty crazy. Not as crazy as the drain tube they had in me for blood. They pulled that out of me after the surgery, go figure! But anyway back to this grid. The whole point is to stimulate it so they can map the outside of your brain. Great this should be fun. So the big day for mapping comes, they tell me this usually will stimulate a seizure, but it isn’t a real one since this guy will be stimulating it. And just let them know when it happens they will hit me with some drugs to calm it right in my vein, ah modern medicine. Early in the day they hit me up with some dope to mellow my noodle out for this test. Then this guy comes in with what looks like a 1970’s stereo amp, you know the look, silver front with big dials and some wires that he strategically hooks up to wires that run to the map in my head. This all applies to this rough picture on paper. The deal is he sends in little electrical impulses to see what will happen. This is painless, remember the brain feels no pain. Unless of course an impulse hits my brain sac which I might feel a burn.
So he starts the test. This should be your left hand and my left hand raises. This should be your tongue and my tongue wags. Left thumb. Etc. When he gets to my eye I think, he trigured the seizure, so I yell out seizure. The nurse comes over hits me in the vein. Seizure ends. Now I am high as a kite. Now you are talking about a guy who the only drug he did was drink. So now you are hitting me with heavy narcotics. So now the hallucinations start. Something totally new to me. You know those metal poles that are all over hospitals that they use to hang bags off of to feed you crap. I watched one of those bend in half. And the right side of my bed I just knew that I couldn’t look there because there was this rotten decaying green, yellow and black torso corpse. So I didn’t look to the right of the bed. The guy doing the test had black hair of his hand and fingers, and he held out his hand and I saw the hair fall off of his finger. FREAKY! Later that night I saw a moth fall from the ceiling and go down my girlfriends shirt. Psst, it was never there.
Heavy stuff. I even asked them is there any way you can take the edge off? They said um, no. So is this what people feel like when they are stoned, well our stuff is a little more pure.
10:17 AM
Well here we go, my public forum to you the reader. This will keep you up to date as to the struggle, laughs, grunts and all the rest that brain tumors have to offer.
Hope you enjoy.
Bob
10:09 AM
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