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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Wednesday, December 01, 2004
1/6/05 So I owe some catching up to some folks I guess. So this will be the forum I put it in so that I can keep those that want to know in the know. Cause talking about it sucks. So for the past 3 monthes I have had an increase in "events" (read seazures). So I got an MRI on Dec. 10th. All I know is there is some kind of increase in some kind of contrast that can mean something. Because of the holidays and such my scan isn't getting reviewed by the tumor board until Friday Jan. the 7th. So that means I get a call tomorrow or Monday with their recommendations. My surgeon still has to review it (when they mention him, it's not a positive signal). Then I want to run their findings and data by one of my old doctors. That went to the west coast. What's the possible routing unknowns for me:
1. Another 1-2 surgeries
2. Radiation
3. More Chemo (the stuff I take every night isn't enough).
4. Some crazy highly toxic chemo stem-cell relaunch thing (Don't ask I might see if I could fly before this one).
5. Some other fun suprise behind door number 8.
The day to day right now. I am currently working on applying for disability again. Where this part of the adventure takes me or how long I have no idea. I just know that going to work was taking it's toll on me. I could never get enough rest. I would wake up and have my left arm numb. I could tell even my left leg wasn't working right.
My last dr. appointment he agreed with me with the increase in activity you have to have something going on up there. I am on 3 different drugs, 15 pills a day just to try to control my events and I still have them.
At one point I knew what time of day was bad not anymore they are totally random. Watching tv, sleeping, talking, sitting, you name it yes even in the shower... no I wasn't doing anything funny, but I will tell you it is cold on that floor when you got to jump out of the shower.
So this is my third run with this and I finally think I have that attitude that people preach about just be happy for the time you got, what's my next meal. I used to get all crazy about the bills, the money this, how to pay for that. Whatever, it so isn't about me. Maybe perspective is a sign of getting older. I have now accepted that I am classic rock.
12/29/04 I am so tired so tired. I have had my MRI, seen a Dr. about it I still have to wait for the official reading of the print in Jan. I have another Dr. appt 2morrow. It looks like I am going to go back out on disability again. I am so tired most of the time - it has nothing to do with my high carb diet. I don't know I am going to have to juggle it all again. Maybe I will just plan to move out of dodge. It cost to much to live here anyway. Find an area with good doctor's some milder temperatures and maybe I can live off the disability money. Use the equity in my house to buy a new one. Our whole area is retarded with housing prices. I am thinking very little snow a fenced in yard for a dog or 2 and hit the road. Plan it out make it right....
12/1/04 There has been so much that has happened since I dropped the ball on my last blog entry. Quick punch list for the people that don't want to read a lot:
I started working again.
Started driving again - bought a truck (I love debt!).
I met an insanely great woman in my life now.
Went to Vegas again.
Mad at my sister again (damn holidays).
And I am again super paranoid for the next 2 weeks about my health. Hey it all can't be gravy!
Now some details so you people that a.d.d., like me, tune out here. You people that love to get all the details and gossip continue.
So back around March / April, an opportunity opened up at my old job and after discussing it with my doctor, we decided I should give it a whirl. I could always go back out on disability if I need to (need to). So after they fumbled the ball at the begining of May I was set to start June 1st, which gave me all of May to get some stuff together before I went back. Because I didn't have any time to do these things while I sat on my disabled ass! So I went back to work June first. Right around that time I met a woman through some friends. Who fit several qualifications that I was looking for. 1. Super-nice 2. Very Beautiful (ok that was a bonus) 3. Lives in town / drives and has a car (I mean come on this was a hit out of the park). We started going on a couple dates, and the FF on that is we are still super solid now. In fact we have only gotten better throughout the year.
So work... it's work. Everyone said you happy to be back at work. What are crazy I am back at WORK. I was on permenant vacation. Yes super limited. Limited mobility, finances the works. But I didn't have to work. So am I happy I went back, I did need some new gadgets 40 gig Ipod - lost my palm had to replace it, had no car etc. So that part is good. It was funny when I started and within 2 blocks I have clothes stores, multiple duane reeds the works. I would go out on lunch shopping for stuff I couldn't get to at home. I didn't get a vehicle until I think the end of July. So for the first month it was funny I had system's down for how to get to the bus and back which included a lot of ride grubbing and walking when I had to, which most of the time was on the way home, which is all up hill, and about 3 miles, a good 50 minute walk, with no side walks. If I get old I am so telling this story with more torturous details (like it rained a couple times)
Life by remote control. I mean the episodes, the aura's the sensations are freaky, imagine, and you can't trust me, that you do something that you don't control. If you stutter it would be like that a bit sometimes this will do that to me stuttering and slurring of speach, and I notice it. I get aura's or sensations and I know it's a good one if it makes my stomach turn.
I mean the paranoia is practically paralyzing. I am just so afraid most of the time now to do anything. Especially before noon which the morning between 9-12:30 seems to be my hotbed of activity. I don't want to talk, I don't want to go anywhere for fear I might have to talk to someone and bang, I will be sitting on the floor in a store waiting for it to pass, and hoping it's a small one. Even sleeping on the way home on the bus (not on the way in-which since I wrote this has changed) has triggered activity, so I read and read and try to stay awake the whole ride home to try to avoid this (reading isn't safe anymore). You figure rest would help me.
So my days are amazing even on the weekends I have been tired so I am sleeping a lot sometimes up to 12 hours (which I never did in my life, outside of being sick). I won't even want to go outside for fear my neighbor might talk to me and bang (it's happening).
I have a constant fear of talking throughout the day. And I am a person known for talking a lot, it has changed me a lot living in this fear of communicating. I look down a lot and don't make eye contact, just one trick to try to avoid casual conversations, the ipod is good too, I always look like I am listening to something and that helps to avoid casual conversation.
On top of anxiety, I am trying to find all my phobias new and old:
Acrophobia - fear of heights (my whole life, nothing like being on solid ground - but I don't mind flying go figure)
Demophobia - fear of being in crowded places (or maybe I just don't like that many people around me!!)
Mysophobia - fear of germs or dirt (hey this stems from having a weakened immune system for 6 months last year)
Meningitophobia - Fear of brain disease (had to add this one in)
The weird part is I have always been a social person amongst my friends and in conversations, and very honest about myself and things going on in my life. Now, I am afraid to say anything because it might trigger an episode. And I can see people that know me, kind of looking at me and seeing that there is something different (or maybe I just know I am acting different). And time and time again conversations dwindle out to nothing, because I have nothing I can say. It is definitely isolating me once again. I always talked to much anyway.
Misc. Quote
2 Corinthians 6:16
So we do not lose heart. Though our outer nature is wasting away, our inner nature is being renewed every day. For this slight momentary affliction is preparing for us an eternal weight of glory beyond all comparison, because we look not to the things that are seen but to the things that are un-seen; for the things that are seen are transient, but the things that are unseen are eternal.
1:46 PM
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