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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Friday, November 07, 2003
So tomorrow I sell my car. How do I feel about this? My wallet is very happy to not be spending money on a car I can’t drive. What’s the Countdown to driving now? It’s still 6 more months I had a facial seizure this past Wednesday. I thought the irony would be now that I sold it I wouldn’t have anymore. Doubt it. How do I really feel about selling my car? It sucks. I dig my car. For those that don’t know, 2000 Black Mustang. I think the car is killer, not in a snowstorm mind you. In the snow that car will leave you high and stuck. Don’t let me fool you, but for getting up and going on a nice day, the car is a kick ass ride. We had some times. That’s the car I bought when the doctor said I could finally drive after my 6 month waiting period after my first brain tumor. I couldn’t afford much, but wanted a cool car. I used to dig that car out in the snow, even though I didn’t drive it last winter. I would still dig it out. I guess it was part denial, part I don’t know. But selling the car finally is like admitting to this thing in my life. It’s letting it win dammit. I am doing the right thing. I can’t drive when I don’t know if I will have a seizure and hurt anyone. But it is going to be a reality that this thing has taken that away from me to. I think part of the time when you are faced with this crap, survival is denial. Yeah you also have to deal with it. Hey I did my time in dealing with it all year. I wonder what the hell next year has in store for me? But I got 2 more months of surprise’s left in this year yet.
My doctor said that my scans looked better again. So there doesn’t seem to be anything worse. At best my MRI showed some improvement in my head he said. There is nothing to show anything that is indicative of tumor activity. They can not see anything on a cellular level of course. What your cells are doing is always your own business. So for now things are stable. Hey I worked for this stability. It’s the rest of my life I keep in chaos and disorder. My platlets have been lower again. They have seesawed a bit in the last couple months. They were up then dropped again. Nothing is wrong with this it is just the platlets are the last thing to recover and nothing I can take to make my bone marrow recover.
Once they recover I am due to go on a low dosage chemo maintenance program. The theory is to just give me a little toxic stuff to help keep the crap from growing back.
It’s a weird feeling going back into the doctor’s office where I had my transfusions. I mean the people there are incredible. Really nice, one of those places where you know it is a job for these people but they must also really like working with the people that they see day and day out. But I do not miss going there at all. Especially in Morristown I am the youngest guy being treated there I mean by a good 30 years plus a lot of times. I mean that’s not to say that the people being treated there aren’t nice people, it’s just I feel way out of place. Makes you jaded to have to be the one in there like I should have had another 30 years to not to have to deal with this. I should be working my butt off now and trying to make a dent in my life. But I am on hold. I guess a lot of us are on hold just in different ways. Some out of work, some in work, some sick, others just can’t get out of their own way. Quitcherbitchin.
To continue the old war story: with anesthesia it is like a hit and miss practice in a way. Everyone seems to react differently. So one of my side effects I had was muscle fatigue. So the only activity I had in bed was eating. The thrill of the day is filling out those hospital menus. Choose between cardboard and cheese and apple acid juice, old lettuce salad, you know the type of choices or maybe you don’t. If you know someone in the hospital and they are not on a restrictive diet bring them outside food. Do it now. I will wait here, I am serious, I am not joking….
So back to the muscle fatigue here’s how it felt. I would eat one spoonful of that hospital jello, and once I got one spoonful to my mouth my arm would be burning like the last set in a crazy weightlifting session. You know that burn when you can’t do one more, but for me it was just resting between spoonfuls. So when the anesthesiologist came to talk to me. I told him to do away with the 3 day muscle burn. They did for the second operation. So I went through the burning you know what, the burning arms, I did the brain mapping. No new seizures the whole week just like I told them. I was in the room with 3 other people, most of them had some sort of seizure problem. Towards the end of the week there was a girl from Japan in there I think. They would let her get up and walk around, even get up and go the bathroom on her own, the trouble was the poor girl would have random seizures all the time. Here I was using the damn pee jar thing, not having seizures, and this girl was allowed up and around I was a bit jealous. And I was scared for her safety, she should have stayed in bed. I worked the system a bit though. They have this chair bathroom thing for the number 2 events (are you with me here). I was not going to do that in bed. So I waited until I got the nighttime round doctor came around, I figured he was an easy mark, and I asked him if I could use that chair thing, and he said yes. I was on my way. So I will skip the old people magazine they gave to me, and how I sat on the chair behind my private curtain, there are no more details, so I will skip the rest. I made friends with a woman diagonal from me Debbie, we still send Christmas cards, good people. No one in the world would operate on her. Dr. Doyle my surgeon was willing and believed he could help her. And he did dammit! She has been doing better ever since her operation. There were a few other people through the room also while I was there. But the nurses and doctors were all great. If you can just hide out there and not get cut up, the people are great.
So anyway back to some gore. I had to wait out the week until Monday the 25th for my operation. I made it through the weekend with visitors, and bad food.
Then the 25th came. They wheeled me and my wires down to the operating room. My surgeon came to see me before the operation to see if I was ready. If I said no, what would happen? The guy had a piece of my skull on ice. So he asked if I had any questions. I said yes, what if while we are in there you realize you have the wrong person’s skull bone? He said well then we will send someone out quick to get yours then. I felt better after he told me this and I was ready to go. Go figure?
So I don’t remember anything really for a while. I woke up with another catheter feeling crappy. Real crappy, the catheter is 75% of the discomfort. Now picture this I am laying there post-op all uncomfortable, rolling on my side to drain the dragon, my dad gets up and walks out of the room. He goes, I am going to the bathroom. So I said shut up show off.
So I was just waiting around asking for pain med’s, I was on perkiset (sp?) for the whole last week. They were my wonder drug. And the hospital’s theory is not to put you on a regular dosage, but if you feel uncomfortable just ask and you shall receive. So by this time after my 2nd operation I was popping these things for like 8 days. I think they started to lose their punch when I asked when I could have more and they said a couple hours. So I just decided to suck it up and deal with what pain I had left. This was on Monday, Tuesday they had to take me down for a post operation MRI.
So first they wanted to take out my catheter. Well you knew I wasn’t going to take this lying down. But I took it lying down kicking and squirming. The nurses didn’t know what the hell my problem was. I was bugging. I my defense the steroids they give you to help keep any swelling down, make a guy feel like he is PMSing. Men are not built to feel this way all wacky and emotional. So these 2 nurses come in for a standard tune up on me. One has to take out my artery line in my left wrist. The other has to pull out the zip cord on my ding a ling (I don’t think I ever saw them after this again). I was crawling up the bed bugging. The lady promised me it wouldn’t hurt, and I was squirming. The other nurse pulled out my artery line and I had blood squirting everywhere, (Mr. Kodak where were you?) And you thought the Paris Hilton video was supposed to be hot. This was me with 3 women!!! So my surgeons nurse practitioner happened to be around (lucky her). Heard the ruckus and came in. When it was all said and done, it wasn’t bad. She asked if I wanted to put off the MRI I said no I will go. She wanted to give me a valium to help me calm down. So then I started arguing with her that I didn’t like taking anything and didn’t want to start a habit? HUH? I don’t know where I got that from, so she said it isn’t habitual it is medicinal so I took it. Needless to say by the time it kicked in I was so happy to be in the hospital. I was telling people around me that this was a great place to be. Meanwhile my head is wrapped in a gauze turban. I look like a wounded soldier. The MRI tech said that they should have given me the valium before the ripped it out. Where was he when I was exposed?
To be continued
Sometimes It Snows In April
Tracy died soon after a long fought civil war,
Just after I’d wiped away his last tear
I guess he’s better off than he was before,
A whole lot better off than the fools he left here
I used 2 cry 4 tracy because he was my only friend
Those kind of cars don’t pass u every day
I used 2 cry 4 tracy because I wanted to see him again,
But sometimes sometimes life ain’t always the way...
Sometimes it snows in april
Sometimes I feel so bad, so bad
Sometimes I wish life was never ending,
And all good things, they say, never last
Springtime was always my favorite time of year,
A time 4 lovers holding hands in the rain
Now springtime only reminds me of tracy’s tears
Always cry 4 love, never cry 4 pain
He used 2 say so strong unafraid to die
Unafraid of the death that left me hypnotized
No, staring at his picture I realized
No one could cry the way my tracy cried
Sometimes it snows in april
Sometimes I feel so bad
Sometimes, sometimes I wish that life was never ending,
And all good things, they say, never last
I often dream of heaven and I know that tracy’s there
I know that he has found another friend
Maybe he’s found the answer 2 all the april snow
Maybe one day I’ll see my tracy again
Sometimes it snows in april
Sometimes I feel so bad, so bad
Sometimes I wish that life was never ending,
But all good things, they say, never last
All good things that say, never last
And love, it isn’t love until it’s past
9:59 PM
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