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, May 03, 2003
5/3/03
Ok so it took me 2 weeks to get back to this update.
My excuse, when you feel nauseous you don’t want to write about it.
So Mo went out with some friends on Friday the 18th, which left our hero, your truly up to his own devices. And what does this crazy ex-biker do? Take a shower and pop popcorn in the microwave and put in a dvd of Swingers. So there I am me, the 2 dogs and the warm glow of the TV. All of sudden in the scene where they are in the trailer with the two girls, my left eye starts twitching. I can’t believe it I am having another seizure. I turned the TV off, grabbed the phone and laid face down on the bed. Fortunately this one was only a facial one and was relatively quick. It still left me feeling nerved out. Needless to say I wasn’t in the mood to watch this movie anymore. I went to sleep a little while later.
So you think that would be it right?
Well the next day Mo and I were on our way to WalMart I think, right there in the car, facial seizure number 2. OK no they don’t get more fun. But who knows, maybe they will.
So here we go with round 2 start up. April 21, and 22 I went to NYU for Chemo injections. I also at the same time take oral chemo for 5 days, morning and night (Monday – Friday). So I got back Monday night, I knew I would be able to get dinner in. I had Uncle Bens rice. I didn’t want to experiment with anything too much, since I might see it again. So about 8:30 I started to feel a little queasy. I knew this was going to happen. About 9:20 I knew it was time to go. I headed upstairs, I was staying by my parents, I don’t have an upstairs. Well I am glad I knew it was time to go. Well Uncle Ben came back to visit. I continued to pump my own stomach every 20 minutes for 2 hours. By the 5th or 6th time, I had nothing left. This was around 11:30 and I finally fell asleep. First day over!
Second day back to the city for the second day of injections, how am I feeling? Cruddy. Well this is what I am supposed to feel for a week. My doctor thinks that if my tumor reacts like my body we are in good luck. My doctor let me know also that he is leaving NYU in September for the University of Southern California. Now most people would be upset about this. But here’s my perspective. My chemo will be done before that. And Bob don’t want no more of this torture. So I am done, out, finished. So, he can go and I will go back to work and life. That’s what I am thinking at least. So we left the city. I went home and just sulked, eating very little. I stayed in bed from Wednesday to Friday basically. I found that this time around I was a lot more sensitive to smells. From food cooking to perfumes, it all smelled bad. I mean me laying around in bed taking toxic chemicals, you know I smelled good. But just because I laid around all week that didn’t mean it was an uneventful week. You know I would never be that boring.
Thursday night Mo got home and I was pretty run down feeling sick, I tried to eat chicken nuggets we had from the super market, I wanted to eat but everything tasted bad. I was walking from the bedroom and I wanted to walk back to it, just figuring I would just go back to laying down. But then I started walking in a circle. I didn’t know why. Just circling in a small pattern like around a 1 foot diameter. Mo thought I was just being wacky. Then it h it me SEIZURE. I said Mo, help me. I just wanted to get down to the floor. Now I was sitting and my arm was flailing around in a circle. Man that was freaky. None of this was under my control. Then I wanted to lay on my stomach. I think I told mo this or motioned. I had a pretty intense one. I was trying to tell myself to STOP. It is a mind trick I try to use. I don’t know if it helps or not. I was foaming from the mouth, face in the carpet. My eyes were blinking, or I was flicking in and out of wakeness, I still don’t know. I was trying to say stop in my head which was skipping like a broken record, but that wasn’t working, so then I just started praying I would black out. It did let up. I think the whole thing lasted probably no longer than 2 minutes. It seems a lot longer while it is happening. When it was done I was very stiff. Mo’s foot was under me and I wanted her to move it but I was like dead weight and she couldn’t move me. I lifted a little and she pulled her leg out. I sat up, trying to gain control of my senses and to calm down, my left arm was completely numb. I lifted it and it just dropped. I couldn’t control it or feel it. But then I felt the tingling of feeling come back in. I think this arm got wedged under me during the seizure and probably lost blood flow. So feeling came back, but the arm was weak and fatigued. I felt like peeing so, I went to get up and walk to the bathroom. I was hobbling along though. My left leg was very fatigued also. So I took more med’s and got on the phone to my seizure doctor, or whoever was on call. So you call the number and get the phone service, you tell them you need the doctor, they page him or her, and they call you back. So I told him the whole run of events, and he said well I want you to go to the emergency room and get a CBC (blood test) and a cat scan. So the timeline here: seizure at about 7:00. At the ER probably 8:15. I got out at like 2 am. Another fun evening with Bob. Mo drove me to Morristown’s ER, she stuck around till like 9pm, hoping for some ER action. None for her. My father met us there and stuck with me till I got released.
So this prompted of course an appointment with my seizure doctor for Monday. The weekend was pretty uneventful after that. I just tried to get back into feeling better. By Tuesday I was pretty much done with nausea and able to start eating anything. At the doctors at NYU on Monday we basically discussed my seizures, my level of meds and raised them 100 mg and now I take 300 in the am 200 in the afternoon, and 300 at bedtime. The rest of the week was quiet I just hung around the house getting caught up on phone calls to insurance companies, friends, doctors billing offices, doctors offices for scheduling etc. Just the phone calls wipe me out some days. The office in New York wanted me to get blood work before the weekend to see if I needed platlets. Well I called Morristown and couldn’t get an appointment until Monday, I called New York, not good enough. So I said why don’t I go to a local lab on Thursday and get my counts. OK this we can do. I went to a lab on Thursday at 7 am. My doctors office got the numbers that afternoon around 3:30. They called me because the fax was smeared pretty bad where it counted (basically where my counts were). The doctor was able to decipher that I needed platlets though. So they called me back said come to NYU in the morning. I said well can’t I go to Morristown to do my platlets? They said they would call over there. Well I got a call back from my doctor in Morristown about coming in first thing Friday morning for platlets.
SO, I got my Friday morning appointment after all. So I go in they check my blood again, it is all about checking blood are you getting this? At these doctors offices they have your counts in like 5 minutes its pretty cool. So they do my counts my platlets are low. White cells apparently are going down also. This is what got me in the hospital last month. So the doctor asks if I am on the Neuprogen yet, I said no because no one told me to. The Neuprogen is a growth hormone which is supposed to help with white growth. So he tells me they will give me a shot while I am there, and he wants me to continue it over the weekend, and next week. Also he wants to check my blood levels next week on Monday, Wednesday, and Friday. Now the magic here is if I get no fever I get no hospital stay. So to avoid this I have to be super-paranoid about germs, ANY sick people can’t come near me. The food I eat all has to be cooked thoroughly at home. You never know what people cook with at a restaurant. Basically when my whites are low, I am more susceptible to anything as far as germs and bacteria. If the little whites I have go after one germ, I am open to any other bug to beat me up. So we also started back on the Cipro which is an anti-biotic.
Now I go over to the other side to get my platlets. You walk in and it is like a pit crew. These women are ready for you. With all the works for IV right there on the chair. Damn no fooling around in the counter or anything. So the first nurse goes for the right arm. She first tries for the inner elbow and is poking around, she says you have a lot of scar tissue, and I don’t think I have it. This is the most common site for blood tests for me, so I am sure this vein is wacked up. So she says it’s a no go and says alright I have a good one on your hand and she goes for that. I felt the needle go in, and I think we went past the vein, into the vein around the vein etc. So we didn’t get that one either. At this point my nerves are tripping and I am shaking like a leaf. So she calls another nurse over, a common practice when someone, just isn’t hitting it. She grabbed my left arm, and said ok stop shaking, I held still, pin prick and bang, she goes ok he is in and done. At the same time my inner elbow on my right arm is gushing, so the first nurse is holding that super firm. When you have no platlets you bleed heavy.
But let me not skip over the best part. Neuprogen is a shot given like insulin. Last month I had 2 in home nurses come in to try to teach me to self-administer. Yeah, OK I am a boy here. So at like 3:30 on Friday I am desperately trying to schedule another nurse to come to my house for Saturday and Sunday to help me. So I get that done, actually I found out at like 9pm that someone was definitely coming out. She basically told me hey, we got to get you doing this. She helped me fill the needle, then turned it over to shaky, anyone that knows me, knows I am not a surgeon for many reasons. After about 5 minutes of holding the needle to my belly, I did it. The needle is like ½ inch long. I am not talking anything crazy here. When I pushed it in I didn’t even feel the needle. The drug you feel a little. So, now I can shoot needles into my belly. I am proud of myself. I have come a long way baby!
So that is basically my update. I am paranoid of a fever and germs. I am eating like a pig to make up for the chemo week. I have been trying to eat lots of meat for my blood. I am a hermit and I don’t care baby. So that is my update for now. I will keep you posted hopefully sooner than later, but not with too much suffering although I know that’s what you guys love to read, drama!!!
Some other random thoughts: I think now and again about the fact that I can not drive, I don’t know when I will be able to again. I need to sell my Mustang. I love that car, and I have to sell it. Know any buyers? I think back to my motorcycle. Man that one hurts, I don’t think I could probably ever have one of them again. I don’t know maybe I do have a little cabin fever. It really stinks not being able to do for yourself. You don’t have any freedom, you have to ask people to ride you around all the time. It stinks. I feel like an albatross a lot of times for the people around me. Mo has put up with a lot. But remember if you give her $20 to get you a bottle of extra strength Tylenol, you are not getting change!! I do miss having a life. Going to work, making money (what a concept). No doctors office 3 times a week. Being able to take myself to the store early on a Sunday, man it stinks. Yeah I guess I am self loathing or something. I am going to throw this one out to you all, always be glad for your health. I know people say it. You know I mean it. When this stuff happens, it sucks. Doctors tell you that you have no choice other than doing what they tell you will probably help you. There are no definite answers. Most people have had people in their family in this position. Not any fun for family or the sick person. I guess there is always this dynamic of being the sick person and being a burden on people that sucks also. I am lucky for a lot of things. I have Mo, my family and friends and a ton of co-workers pulling for me. That support has meant a lot through out this. When I can pick up the phone and get someone to talk for a little bit, and let me know what is going on in the real world, it is cool. Hey don’t get me wrong staying home is not torture. I like to work though, I miss the gig, the day in and out. I would work everyday of my life if I could have my health. We don’t pick what we get in this life though.
10:04 PM
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