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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Monday, May 17, 2004
Willie Nelson
Always On My Mind
Maybe I didn't treat you
Quite as good as I should have
Maybe I didn't love you
Quite as often as I could have
Little things I should
have said and done
I just never took the time
You were always on my mind
You were always on my mind
Maybe I didn't hold you
All those lonely, lonely nights
And I guess I never told you
I'm so happy that you are mine
If I made you feel second best
Girl I'm sorry I was blind
You were always on my mind
You were always on my mind
Tell me, tell me that your
Sweet love hasn't died
Give me, give me one more chance
To keep you satisfied
Keep you satisfied
Little things I should have
Said and done
I just never took the time
You were always on my mind
You were always on my mind
You were always on my mind....
Willie Nelson The Last Thing I Needed
The post man delivered a past-due bill notice
The alarm clock rang two hours late
The garbageman left all the trash on the sidewalk
And the hinges fell off of the gate
And this morning at breakfast I spilled all the coffee
And I opened the door on my knee
The last thing I needed the first thing this morning
was to have you walk out on me.
Last night you came home late and I knew you'd been drinking
By that old mellow look on your face
I thought it don't matter, 'cause it's the holiday season
And you filled such a big empty space
And I laid down beside you, and I wanted your loving
'Cause your love makes my life complete
And the last thing I needed the first thing this morning
was to have you walk out on me.
So excuse me for looking like my world is dead-ended
And excuse me for looking like I just lost my best friend
Excuse me for living and being forgiving
so just go on if you want to be free
But the last thing I needed the first thing this morning
was to have you walk out on me.
So I have been meaning to get to more writing I have been carrying around a couple posts in my head for a week or so. Families, you don’t get to choose them and you don’t get to control them, what fun is that? For anyone that doesn’t know my sister, know this. If she EVER loans you something, don’t even bother using it, just store it for her for when she wants it back. I will give you 3 examples of this theory, and I promise I haven’t made this bit up. I am funny, but not this creative! So when we lived together she once asked for some old rock records that were hers from years ago, just because she wanted to bust my balls, not because she had any interest in them at all, she liked club music. Fast forward they were going to Disney world and her husband had given my father his old beat up electric shaver, because it wasn’t working right, he had gotten a new one. He also did not provide a cord so you could charge this busted shaver. It’s usefulness a big whopping zero. So back to the Disney world thing, when they were getting ready to go he asked my father for the shaver back, because the one he got to replace the one he gave away wasn’t working right anymore. Well this old beat up shaver is somewhere in a dump decaying for the next 1000 years so this item was not returned. Now when she got married originally she had a cat. To shorten this epic saga, the cat didn’t work out so she gave it away, she did not give away the cat carrier with the cat just dropped it off. So there in was this non-needed cat carrier case. I had 2 cats, got a third, and the case was routed to me for my third cat. One cat per case I hope you are following this. So what’s that you say? Yes, she got a new cat and wanted her case back. What’s that you say, they sell them everywhere, yes we know that. So I took the high road, I hope, I said ok I will go home and figure out which one is hers and re-route it to her via my parents. She called back to my parents and said, mine is the pink one. So when I get rid of my third cat she goes in a cardboard box with holes in it to her new home C-YA! Don’t say I didn’t warn you. I think she has old stuff stored all over the state with different people. No thanks I don’t want your old stuff anymore. I will just go buy my own shavers vinyl records and cat carriers. And if I gave you anything that I didn’t need anymore I won’t ask for it back.
P.S. I think I still have one of her vinyl records.
Ok now that that is off my chest. Medical stuff.
Thursday May 13th 11:00 am and 6:30 pm 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.
The first one happened during an EEG for Dr. Pacia which is used to trigger seizures, and I was hooked up to a machine during it and he was able to analyze the brain waves during it. This is the first time I ever had 2 in one day. So I was pissed about the fact that I had 2 in one day, but I am going to discount the first based on the test. From what Dr. Pacia was explaining to me, we seem to have the “events” isolated to such a small region that it seems to not be near my leg or arm controls at all, just some facial controls. So the thought is that there is there might be a tiny little piece of possible tumor material in one small place. Or maybe just some messed up post op trauma left over. There is no way of knowing for sure what is going on unless you pop the hood and go in surgically and this doesn’t call for that type of action. I guess if you have to have them this is the ideal to have them in such a small spot. So I inquired about the ability to drive and he said that technically he didn’t see a reason why I wouldn’t be able to. I was debating getting a scooter like the messengers have for getting around. First of all it is hard to shop for something when you can’t get around to each dealer to dealer to actually see things. Second of all my doctor pointed out a valid point if I take a fall off one of these things, and my platlets are low from my maintenance chemo, I am going to BLEED. So I left the doctor and these thoughts all ate at my brain. One friend drove me to the bus to go to NYC in the morning. Now granted she had made the offer to drive me and lives near me so it isn’t a real biggee. But when she got on the bus she said well yeah I had to get up 15 minutes early to pick his butt up. The comment was made out of jest, I feel bad enough having to mooch rides off of friends to get things done, and I can’t get a lot of things done all the time. I have to wait until I can latch onto another trip to do a couple of things. The only way to keep on top of this is I keep a things needed list on my palm pilot, and if I do get to the store I try to go through my list. I get to the food store now like every week and half to 2 weeks now, so I have to stock up when I go. The bummer is it is not easy to always keep fresh fruit and stuff on hand. I am trying to eat healthier again with more fruits and salads. So then on the way home I got a ride from another friend who was taking an earlier bus. Again the stuff the doctor was talking about was weighing on me and I was thinking about it. I hadn’t slept good in 3 days because of a heat wave we had. On the bus ride home, the second facial seizure hit me. I kind of bugged, I was in a chair next to my friend who was sleeping, and I just waited and it faded away after about 45 seconds. But this was the first time I had had 2 seizures in one day. I used to think if I had one then I was safe for the rest of the day at least. Not so anymore. Remember life will change all the rules. So I was just piling on the things to debate and think about on my traffic ridden commute home.
So when I got home that night my neighbor told me he got a biopsy back and he has skin cancer, my stomach sank. I can’t stand this monkey. I mean I fought this mother-you-know-what, and now I am having a friend get hit right in front of me. So I have gone in to super action trying to help him get to a doctor to get checked out. He is in a bad situation because he is out of work with no income, no benefits, and a serious health issue. I have narrowed it down after a lot of phone work to a clinic in Morristown where we are going to try to get an appointment tomorrow to get to see a doctor and to apply for assisted treatment. I am glad I can do the leg work via the phone to try to get him on the right path to getting treatment. The worst feeling is when things are out of your control and you can’t do anything about them. When you can actually work a phone and get someone help it is a good feeling. At least I can hopefully get him in a place and avenue to get some treatment. So Friday and Monday morning I did all this research. Friday afternoon I got picked up by a friend to go see his band play. We went out to his house and him and his wife made a kick butt bar b-q and we ate like pigs. Then we went to his gig. Man hole in the wall bars are all the same. His band was good, biggest problem was the group of air guitar playing guys that danced between me and his band, um, no I don’t want to watch men do shots and get drunk and sing songs. I suggested a couple of bikini girls on each side of the band dancing for us to watch. I mean ZZ Top does it and it works. We got done there and I stayed over my friends’ house Friday night. Then Saturday we got a late start, we were out a little late?!?!? Then we did lunch hit best buy then watched TOTO in high definition. Over all it was a very constructive day. Then I had my parents pick me up to go with them to the VFW. OK wake up here we are at a point of contention with my sister again. Now she had planned a birthday party for my one niece for Sunday, and I hadn’t planned to attend, the whole driving thing maybe? Anyway what I did want to attend was my father was becoming the Commander at the VFW for this next year. Don’t worry my sister didn’t come to support him, but by default of not being able to drive home myself. I did get to go to her house to see my 2 nieces, which I do like to do, I was a little upset about that one way street thing, with oh, why should we show up to something to show our father support. But whatever, my purpose has been served. I supported my father because I wanted to. I got to see my nieces again which was nice. And she got her pink cat carrier back. I guess it was a homerun.
I guess what is really eating at my brain is still the meeting with my doctor where he said that technically I could drive. I am just reaching a frustrating crossroads again. When I was over my friends’ house, I mean this guy works hard, but he also steps in luck all the time. He has a great new townhouse that has almost doubled in value. A company car, a corvette, the same truck as the queer eye for the straight guy’s have (but insists at least his is a different color – hey don’t explain to me, I don’t have to put fuel in it). His wife is a 10 – I mean really nice to him always supportive, she is about 5 months pregnant I mean the sun isn’t any brighter for this guy. I try to remind him not to take his life for granted when he is busy running around in it. He is a great friend though and always helpful for me. The point I am getting at is I was at his house, and I couldn’t sleep past like 8:30 am so I was thinking and I was just so frustrated that I couldn’t have my own freedom at all. I mean when I go out I am always trying to work angles to have rides around. And to get to point a to b and home again. It is also getting old to the people around me I think. I just wish I could complete my picture right now with having the freedoms I would like to have. The sacrifices are getting old I mean I haven’t been on the road for almost 18 months. And when the weather gets nicer and I see people out on their motorcycles it kills me, especially hanging out in bars, because to me bars aren’t that exciting, but when I did hang out at them, it became a lot of fun to plan long ways to get to them and then some other long way home. And if the inside of the bar got boring, I could always just go outside and stare at my bike. I just want my life back. Some kind of beat around truck, and a home run would be having another bike. All this is hung up in my head right now. It’s driving me nuts. I am single and kind of still in limbo with my life.
I know I am throwing a lot out there and bitching and all that I get it. If you are still awake enough to be reading this wow….
For a guy that doesn’t drive I was away from my house from Friday afternoon until Sunday. But the flip side of that is all the times when I need things and I can’t get them for days on end, and I just have to deal with it.
I wish I didn’t have to sound so bitter. I mean I guess I am just reaching the point where I am feeling better and I want to have the freedom to have a life on my own terms again. I don’t think anyone would want to be grounded like they were 15 again.
Try giving up your car for 18 days. You couldn’t do it, try 18 months.
9:18 PM
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