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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Thursday, April 22, 2004
4/21/04
People will keep you guessing. You do what you can, I mean I guess I can be overzealous with things.
It is interesting to reflect back to the hell I lived through last year. I guess still being above ground is the common goal here, hey you can only avoid death for so long eventually it wins. I guess a little of what has me nuts is being in the middle of a lot of moving pieces right now. I am going through the end of a relationship which has been ending for at least a year now. So now I have to re-set up my house for just me. I have been in talks with my old job about going back to work. Sometimes it just feels like all the crap has to happen at once. Like there?s a secret society that makes sure that the shit hits the fan all at once for everyone. I used to feed off this type of energy now I am not used to it. I feel like I have all these plates in the air. Oh well I guess it?s like everything else just deal with it the only thing I can control is myself in this whole situation. Everything and everyone else needs to just get inline. I hate being at the mercy of relying on other people. But it is good to have some friends to help.
Imagine not being able to come and go as you please. I mean your whole life you get in the car and go about your life. Then imagine having to eat a big piece of humble pie and having to ask someone to help get you around.
Imagine that... You can't.
I see people come and go in and out of the cancer center. I can see the look. I know the look all the subtle things, that you might not notice I pick up on in the pain of these people. Even outside of the center, I can pick them out sometimes. Why is that lady wearing that bandana, no she isn?t Sinead O?Connor?s mother, look at the bags under her eyes, you can read the pain.
It?s amazing what people will go through to breathe another day.
And then the lesson in perspective, this is where I was at last year at this time, what a difference a year makes:
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.
10:58 PM
Monday, April 12, 2004
Sometimes you are just feeling the blues I guess. And then sometimes you just don’t even want to dwell on it, even though you got it. That’s where I’m at, I want to write in here but I don’t want to come off as being all self centered. Sometimes you just need to be reminded of some kick ass people in your life. It’s like that night when one cd won’t do, you would dig a combination of tunes. Dexter Gordon and Miles Davis mellow jazz. Lou Reed introspective stuff. Stones bluesy stuff. Even dusting off the old self loathing Cure stuff comes in. And let’s not forget Bobby D. You know, Dylan. Man we got 4 days of rain coming. Springtime is here.
And just because I am in this mood I am throwing out a pile of lyrics with no titles or authors….deal with it:
I ain't too good at conversation, girl,
So you might not know exactly how I feel,
But if I could, I'd bring you to the mountaintop, girl,
And build you a house made out of stainless steel.
But it's like I'm stuck inside a painting
That's hanging in the Louvre,
My throat start to tickle and my nose itches
But I know that I can't move.
I know this song
With this one really killer line
I don’t remember it exactly
But it slays me every time
It’s on the jukebox there
I know it’s number 55403
Go put that song on for me won’t you
And make Gracie think of me
Come over here from over there, girl,
Sit down here. You can have my chair.
I can't see us goin' anywhere, girl.
The only place open is a thousand miles away and I can't take you there.
I wish I'd have been a doctor,
Maybe I'd have saved some life that had been lost,
Maybe I'd have done some good in the world
'Stead of burning every bridge I crossed.
Desperado, oh, you ain’t gettin’ no youger
Your pain and your hunger, they’re drivin’ you home
And freedom, oh freedom well, that’s just some people talkin’
Your prison is walking through this world all alone
Just wanna be that someone you weren't looking for
Some nameless fascination that showed up at your door
And when you're sad and blue my jokes still make you smile
And I could be with you awhile
Heal me with your laughter
Make me smile honey, it’s been days
Hold me in your arms now
Lock me in your gilded cage
Hold me till you heal me baby,
Fix my hearts gaping hole
Fix me babe I’m broken,
Like that screen on your back porch
you are a china shop
and i am a bull
you are really good food
and i am full
I woke up today
to find myself in the other place
with a trail of my footprints
from where I ran away
it seems everything I've heard
just might be true
and you know me
(well you think you do)
sometimes, I have everything......
yet I wish I felt something
do you know how far this has gone?
just how damaged have I become?
when I think I can overcome
it runs even deeper
in a dream I'm a different me
with a perfect you
we fit perfectly
for once in my life I feel complete
(and I still wanna ruin it)
afraid to look
as clear as day
this plan is long been underway
I hear them call
I cannot stay
the voice inviting me away
I close my eyes, you reappear
I always carry you inside, in here
I fall asleep, you come to me
And once again our love is real
How could I have let you get away
Why couldn't I have found a way to say
Tu eres el amor de mi vida (You are the love of my life)
Si solo te pudiera encontrar (If only I could find you)
Con todo el corazon te diria (With all my heart I would tell you)
Tu eres mi amor de verdad (you are my true love)
I look outside, I know you're there
And you've found a brand new life somewhere
I only wish it had been us
But I'm happy for your happiness
How could I ever let you go
How will I ever let you know
10:30 PM
Wednesday, April 07, 2004
Got Seizure?
Wednesday April 7, 2004 6pm Facial Seizure again it began with a little ticking in the face, then it stopped for about 5 seconds and then it went on for about a minute this time, it seems to linger a little at the end with some eyebrow ticks at the end.
Hey when you got it you got it.
So I feel like I am missing the boat. Come on I mean here I am a head-case, and the only drugs I am on is to prevent me from having seizures, chemo, and vitamins. I mean this blog would be twitching if I didn’t take those drugs, I wouldn’t even have time to write, I would never stand still enough.
But seriously, I am not supposed to drink, I have never like “recreational” drugs, how about a little something to take the edge off, and keep me relaxed more. I mean I am not about the whole hip to be on prozac thing. I mean I had valium in the hospital, and I thought I was on the love boat. But who needs to be addicted to something on top of needing to take some drugs.
But I think it is time for me to research a little something something. You know make the world a sunnier place (picture me mowing the lawn in the rain, shoveling snow that doesn’t exist). I mean I might just turn into that weird old guy that lives alone in the neighborhood that all the kids talk about. You know the one, every neighborhood had one. And it will be like on the Sopranos it will be the telephone game. My neighbor’s parents know what is wrong with me, and they partially explain it to one kid, then that kid tells it to another and by the time it is done, I am a former ax murderer who is on the child molesting protection list. Go figure why they steal my tulips in the spring.
So I go to get my blood checked today. All levels were up, I promised the doctor I would try to screw that up before I see him again in 2 weeks. Well on Wednesday there are volunteers in the cancer center in Morristown Hospital that set up a little spread of coffee cookies juice fresh fruit a guy playing the piano it’s a nice little set up. So after my appointment I had some time to kill (don’t we all) so I went over got some doughnuts and cookies and sat down at a little table. SO I was eavesdropping at a table next to me and everyone was comparing illness’s like old war stories. I said to myself now isn’t this a morbid group. So then this guy comes over and sits at the table, and now we are on! It’s our turn to swap stories. I swear it was like that retarded thing they do with timed dating / talking whatever they call it. So it turns out I had to kick out some history on myself. Turns out his wife was in for treatment and he was waiting for her. He was a real nice guy, his wife well let me skip to the end. She comes over and looks right at him, let’s go we have to be somewhere and they storm off. Oh yeah nice to meat you too. I got dumped on at the cancer social. Next thing I know I am eavesdropping on one of the volunteers talk to this guy about her golf club. Then I said to myself, I don’t get sports number one, and golf, no way, and she belongs to a club. Just as I figured she has nowhere to be so she does some good for people, but to have to hear about the golf club yadda yadda. That’s when I realized it was time to move on.
7:18 PM
Monday, April 05, 2004
4/5/04
Songs, so I have put up enough songs I guess. Nothing much new, buying time. Sometimes it takes getting outside of your circle to see the cloud you live in. I mean I know people had said to me in the past, I couldn’t do it, I couldn’t go through what you are doing. I have discussed this before, when you are faced with it, you either do it or you don’t. I went through with it, the treatment that is, I mean I don’t recommend it to anyone as a hobby. But sometimes I get so isolated and used to being in my own situation, that it takes seeing how the other half live to see that I have done something in being a hermit. I mean here I am living up on this mountain by myself, without a car. I do get rides to stores from helpful friends, family and neighbors. Hey you learn not to mind mooching rides to pick up food, medicine or just a ride to where you got to get to. I mean I spent the rest of my adult life always being able to get in a car and go. Now I look at other people and realize you know what, they couldn’t do what I am doing. They don’t have it in them to be so stubbornly independent to live on their own. No it isn’t the happiest way, I mean I miss my independence so much. That is one of the biggest drags. Car payments, insurance, and raising gas prices you could have them!! But as far as putting up with myself and taking care of myself and having limited social contact, especially during the winter when you get holed up in the house. I guess it has been gradual also, being sick for most of last year distracted me from the big change of being on my ass. But I know some people that just couldn’t sit on the bench like I have, they would wilt and rot. I guess it is not anything to be proud of, a lot of people would say I am just a lazy bastard and all that. Some people would be jealous and would love to not to go to work, but it is beyond that. Oh and another thing, it never makes me feel better when you reiterate to me how right now should be “our” really successful years. Flush my self worth with that one. I still have the fight in me I know that, I haven’t had anywhere to funnel the energy since I have been laid off. Remember you might hate going to work every morning, hate your job (and only you can change that). But once life kicks your health in the ass and you lose that, you got nothing. So if you have your health and you are able to go to work every day, Make your money for your mortgage, food, clothes, a vacation every so often. Don’t take it for granted. In the blink of an eye it can just be pulled away from you.
I guess it is just interesting when I see people that are caught up in their day to day goings on, and don’t even realize what they have going on to be thankful.
Things didn’t turn out like we thought they would I guess.
I think of some of the craziest “events” that I have experienced in the last year. They are the worst of it. When something upstairs misfires, and you are no longer in control of yourself. I mean try to picture this: Flashback to an entry from 11/22/03:
So what’s been new? Well this month so far 2 “events”. I had a smaller facial seizure about 2 weeks ago. You know that first drop on a roller coaster? The one you know is coming? Like you climb up and up, and then you look down and DROP. That’s the type of take off these things have. Except you don’t start a seizure on purpose, you put yourself on that rollercoaster. So after that climb you drop and then everything goes rushing by and you can’t stop and get off until the end, you just have to ride it out. Even if you are scared shitless, you can’t stop until the ride lets you. I personally like to flip the bird when the camera takes that picture of you that you see when you get off. Hey it makes me laugh and that is all that counts.
Well the second “event” I had just this past Wednesday. And I usually know that I am due for one depending on my stress level (more stress= better chances, less sleep=better chances, and chemo that’s a given). I also usually have all these tiny little ticks like warning signals that I am due for a beating. So for the past 3 weeks I have randomly had a few ticks, usually facial, what’s it feel like? Like a jerk in your face that you didn’t do. So back to Wednesday we are driving back from the vet and BAM, I am looking down the first drop of the rollercoaster, and have been dropped. My face started ticking, tick tick tick, I am thinking to myself, “OK no big deal just a facial one. I am staring at the clock in the dashboard it is 3:11 pm. I thought great I can time this one. I remember just my left eye going bang bang bang by itself from right to left. It was pinning left bang bang bang (no pain but it felt like my eye was a bouncing ball going left left left). I remember thinking damn my eye is pinning real hard. I kept thinking no big deal this is just a facial it will be over quick. My tongue too was doing loopy loos in my mouth too. Like after the first drop the rollercoaster gets easier. Not the case on this trip. I thought it will end quick no big deal. I remember the dog was crying a little, I think he probably had to pee, it had nothing to do with me. I kept thinking ok stop now, no more, stop now. You know the OH SHIT feeling when after the big drop you go up a little down some more and bank left. Then I start to feel my left arm shake, but it is more like a vibrating feeling, and I am just waiting for it to go numb so I stop feeling it shake. You know that vibrating feeling from a wooden rollercoaster, bingo! That’s why I like steel coasters so much better. I like a smooth ride for my torture. This is like getting an even bigger drop in the middle of the ride, where you don’t expect it. Or when you realize now you have to ride the whole thing over again but backwards. Because now I know this thing isn’t over. The seizure is going to be a biggie. I am still awake for the whole thing, if I pass out, that is a worse signal, and I have to go to the hospital. So I want to stay awake, but I don’t want to live through it. I remember I was motioning with my right arm, but then even that I couldn’t do anymore. You know that feeling you get when the rollercoaster suddenly stops and you just slowly pull back up to the gate. Like, WOW OH SHIT. That’s the type of feeling at the end. It slows down to an almost stop and then I know it is over. I can’t talk at the end I am wacked out. I feel about ½ of my body. I can’t feel my left side at all arm or leg. I feel virtually paralyzed at this point, I slowly start to regain my speech. I am a little disoriented. But I just have to wait for feeling to come back. So you know how that long rollercoaster is only like 60 seconds of a ride. Same deal here. You wait through all these warning ticks (like waiting on that line) you jump on the ride (start the seizure) and it’s over before you can stop being scared. Except I think a seizure is scarier, I actually like going upside down on rollercoasters, I hate these seizures.
Screw Six Flags. I have seizures (and it doesn’t cost me parking, park admission, the piece of my car the monkee’s stole in the drive through safari, overpriced food and drinks and a souvenir.)
So we get home about 5 minutes later, and now I have to try to get out of the car. My left side is really dragging and I still don’t have much function or feeling in my left arm. I tried walking up the stairs normal and my left leg kept dragging so I tripped up like 3 stairs so then I realized that I had to step up with my right leg first. I couldn’t judge the steps with my left leg it was dragging. I got inside and sat down a little while. I tried using the computer, but my left hand just laid there lifeless. And my right had was a bit tired too. My eyes were tired. I had to stop it was too frustrating trying to do something and my eyes being tired and my left hand wasn’t even moving.
How was your Wednesday?
This is the craziest part to think that that is where I might very well be going into bigger events that will kick my ass and I own no power over them. Remember getting on that roller coaster by choice, now imagine your body is taken over.
Here’s another past gem I never posted this is a good one for those who believe anxiety doesn’t exist:
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.
If you think anxiety don’t exist screw you and get me some valium dammit (that stuff’s hard to get nowadays, but that is a drug I could get to like, it kind of takes the edge off that way instead of cutting yourself you just beat yourself and enjoy doing it!!)
So what if there was a miracle cure tomorrow. Someone found a turn key method to turn this whole thing around. And it was something stupid like eat 10 grapefruits in a row. What would happen to the whole cancer research, drug company interests, cancer clinics, hospitals, MRI machines, all that jazz would go unused. Do you think the government would embrace it? Think about it would big business actually want you to know the solution was easily obtainable? The economic back lash would be devastating. There is a Doctor in Texas who is supposed to have a great holistic approach to brain stuff who has cured “un-curable” patients. And no your insurance won’t pay for this type of treatment. Something for me to keep on the burner for a next time. I mean the government almost tried to lynch this guy figuratively. There are people alive today and the only thing to credit is his treatment. But come on it is like someone coming out on Easter Sunday and saying I am Jesus Christ I have come back for my sheep, we would lock up that person in the blink of an eye.
Maybe I am a skeptic? I don’t know. Don’t worry I am not the second coming or the Easter Bunny. It is the suppression of a solution to this problem I have that scares me most.
10:49 PM
Thursday, April 01, 2004
2 new songs from Warren Zevon's last record (for those of you who don't know about this joyful record, he made it while he was dying from cancer - very uplifting - you should hear the version of knocking on heavens door)
Enjoy.
Warren Zevon She’s Too Good For Me From The Wind
I could hold my head up high and say that I left first
Or I can hang my head and cry
Tell me which is worse
If you go and ask her why
She might say she's not sure
Trust me when I tell you I'm not good enough for her
I want her to be happy
I want her to be free
I want her to be everything she couldn't be with me
I'd wait here for a thousand years if she'd come back to me
I have everything she wants but nothing that she needs
I want her to be happy
I want her to be free
I want her to be everything she couldn't be with me
I could hold my head up high and say that I left first
Or I can hang my head and cry
Tell me which is worse
If you go and ask her why
She might say she's not sure
Trust me when I tell you I'm not good enough for her
Warren Zevon El Amor De Mi Vida From The Wind
I close my eyes, you reappear
I always carry you inside, in here
I fall asleep, you come to me
And once again our love is real
How could I have let you get away
Why couldn't I have found a way to say
Tu eres el amor de mi vida (You are the love of my life)
Si solo te pudiera encontrar (If only I could find you)
Con todo el corazon te diria (With all my heart I would tell you)
Tu eres mi amor de verdad (you are my true love)
I look outside, I know you're there
And you've found a brand new life somewhere
I only wish it had been us
But I'm happy for your happiness
How could I ever let you go
How will I ever let you know
Tu eres el amor de mi vida (You are the love of my life)
Si solo te pudiera encontrar (If only I could find you)
Con todo el corazon te diria (With all my heart I would tell you)
Tu eres mi amor de verdad (you are my true love)
Tu eres mi amor (You are my love)
Tu eres mi amor (You are my love)
Tu eres mi amor de verdad (You are my true love)
Tu eres mi amor (You are my love)
Tu eres mi amor (You are my love)
Tu eres mi amor de verdad (You are my true love)
1:14 PM
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