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, March 03, 2005
3/3/05
I got a lot of supportive emails from friends yesterday after announcing my surgery date. Always a bridesmaid never a bride. Thank you for all the support. It’s great to hear that everyone is so supportive, I am trying to get an assistant at the hospital to book visitors for me, anyone know any out of work booking agents, heck MJI probably saw several get marched out of Clear Channel (you got $250 for that seat) wait I didn’t say that did I?
I am waiting to hear back from scheduling at the Dr's office about all of my scheduling. I might have to go into the city on this Friday the 4th for some Neuro-psychology testing. Every time they have asked me to go, I never went.
1. I know I am crazy
2. I know I have a hole in my head.
No it's actually used to see if over time your mind changes from treatments. Let's see we have tumors that keep coming back causing me seizures and trying to kill me eventually. Let's just say I threw out the aces in my deck and I don't worry about good and bad cholesterol. Eventually this thing will win. Not a Dr. in the world will really know when, Every day is a gift treat it like the first and last one all day and then hope for another one. Thank you for all the gifts of kindness and thoughts from my close friends.
Update on scheduling I just had a call I have to be in the city for 1 pm to do some brain wave scan test thingy, I don’t know non-invasive but I have to lay there for like 3 / 4 hours doing nothing, maybe if I slip the host / hostess a $20 they will cut it in half? I dunno what’s make this test shorter etiquette?
It took three Tuesday's for the Dr's to finally meet about me and now, it's down to one week until surgery. This is the two step surgery we did this the first time more thorough. I just remembering being very uncomfortable and in pain in before the 2nd operations. After the removal I don't remember to much pain past the first 24 hours. Five days after the removal you are out and back home. Recovery time from surgery is one month. Then we switch gears for futhe4r treatment, but that isn’t on our plate this week. Just the surgery thing, one thing at a time. I have learned a lot from the past, people, things. I saw grown ups as a kid that were into drugs pumping gas yeah I pumped gas at age 15. But I knew I wanted more from life than that. And my father taught me to be responsible by his actions, not by yelling or hitting. My father had been through so much but did the right thing and stayed right by his kids. It was just known that you wouldn’t want to disappoint him. We can never control other people and how they treat us no matter how hard you try you are not going to have complete control over other people. And what they will do to you. Friends and family come and go and when you are done with that filter of people, the ones that don’t disappear are your golden friends. The ones that get closer when things in your life are bad.
You also have no control when life kicks your butt, remember most flat tires happen in the rain when you are late, I mean if it was 80 and sunny and you had time to get there it wouldn’t bother you so much.
Flat tires aside, back to me…. I mean this being the third time I have a lot more clarity. I know I am a lot more at peace and mature about where I am. The first time pure denial, got out and rested and was back to work in 2 months. That spring back to driving and back on the Harley.
The second time I felt very defeated because I was told by the doctors that if it came back again it would be a more aggressive tumor. I had 1 surgery and 9 months of heavy chemo I had idea what I was in for. If you know anyone on chemo help them any way you can. Don’t let pride get in the way they are suffering.
So when I had the second one I dealt with the depression.
You see I guess I am keeping this up so I can go through all the stages of dealing with it. I am after all a head case. I mean since the second time I have one glory run where I made 8 weeks without a seizure. But that streak ended and things just kept coming and have just spiraled up since. I remember a good month was only 1 or 2 seizures. In October things seemed to be getting worse. But dammit I had a vacation planned in November so I put everything off until December. I got new MRI scans and by that time the seizures were happening all the time. So Jan 3rd was my last day at work so we could get a plan in stage to go after this for the 3rd time. For more details on Jan to now if you are just picking this up go back through the archive.
A PSA on tumor’s what they are and how they behave and how we attack them:
What people don’t understand is that tumors are like cars. Let’s say I got a land rover and you got a Chrysler. Now there are a ton of other types of cars (tumors) out there. And let’s say my land rover is in the tundra of Alaska. And your Chrysler is in a garage in New Jersey (like tumors can be in all different parts of the brain). This is great my damn nieces could bring this to class and a bunch of little kids could understand it. So what do we get out of this is that different types of tumors in different parts of the brain. Some can be operated on some can’t. Can is better than can’t. If a surgeon can get say a pebbles worth of bad cells out then when you follow up with radiation and chemo there are a lot less bad cells to treat.
Now tumors are also like trees, stick with me now. They have infiltrating branch’s (or roots) that run deeper than their location. This is all on the non-surgical cellular level and they run into the delicate important parts of the brain. If you are lucky the growth the treatments will stagnate the growth and increase your quality of life, and help you live longer. If the treatment doesn’t help anarchy continues. No telling from land rover to Chrysler how one environment will make a car / person last longer. The land rover may drive 150,000 miles through the woods and the Chrysler gets hit at 1,000 miles and junked. It’s a roll of the dice.
4:33 PM
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