1 comment September 24th, 2007 1,728 views
I am tired and weak and and I’ve never been happier 
K took this picture yesterday at the Greek Theater where we were seeing Phil Lesh and Friends. I was too tired to even sit up for most of the show, but I had a great time anyway laying on the grass and listening.
Filed under: Random
Tags: life
10 comments September 21st, 2007 1,269 views
I am going to be OK. I have cat scratch fever! Not lymphoma! I am so happy. Still in shock a little. My parents and Karen were all here when I got the good news. We had a happy cryfest. I am so happy. Did I mention that? Thanks to everybody for everything! Antibiotics will fix me. I have never been so happy to have a disease in my life. I have no words for the kind of relief that everyone here is feeling right now. Thanks again to everybody for your support and kind words and good wishes and company!
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Tags: life
5 comments September 11th, 2007 1,150 views
i have been on the edge of panic for nearly 2 weeks now. ever since i noticed the first lump. there are things that help. sometimes ativan, but I like to leave that as a last resort because so many thing are going on in my body, it is already hard to keep them straight.
distractions help. warcrack has been great when i can play it. writing is helping right now. people have been staying with me every day. i am lucky to have people that care about me like that. I don’t always completely understand why they do, considering that i am antisocial and often suck at returning emails. phone calls are even worse. my parents are coming on sunday. k is there for me always. i don’t know why i get to be this lucky, but i have never been more thankful for it than i am now.
i called the clinic the night i found the lump. Or maybe K did. The triage nurse decided I was worthy to see a doctor and said to come in the next day. The appt. was at 10am. They told me to come at 9:45.
While I was walking over there, I was thinking about what i would want to do if i found out something really bad. i believe that no matter how hard you try to think positively, it is impossible to keep your mind from going to the worst places. First i thought amsterdam w/k, but then got suddenly panicked. no. it is too far away. i want to be with the rest of my family too.
I got there at 9:45 and waited until 10:45 to see a doctor for 5 minutes. He sent me to get some chest x-rays and said to come right back and he would see me again. I got back with my x-rays and waited another half hour. The doc says, “I don’t read these very often, but it looks normal to me.” Thanks doc. He comes back with a nurse to give me a breast exam. He thinks he feels another lump there but is not sure so schedules blood tests and a mammogram and tells me to come back in 2 weeks.
I was too freaked out to wait at the clinic for the appointments and told the receptionist to call me.
i leave. cry. call k. k cries. k comes home.
we are both very very scared. sorry k. always something isn’t it?
had a fever for a while and had to go to the ER and get IV and more blood tests. all blood tests have been normal so far. mammogram was good too. Apparently normal blood tests are a bad thing because they are ruling out other possible causes.
K came with me to the doc to get test results and that is when he told us that he thinks I most likely have lymphoma as mentioned in the previous post. I started writing this post on the day I first went to the clinic, but then was not able to look at it again until now. There is still a chance it is not something terrible. We are all hoping for cat scratch fever which has amazingly similar symptoms to lymphoma.
The doc told us that the first lump would be removed at the biopsy, which was supposed to be tomorrow. It now appears that tomorrow’s appointment is only a consultation with the doc who will be doing the biopsy. Today, I was supposed to get a blood smear, but they had to call the doc with questions about the test and it was over half an hour and they still hadn’t heard back and they kept saying it would be soon or that i was next, but kept calling other names. I wasn’t feeling very well. Completely exhausted and starting to panic. Finally I couldn’t handle being there any more and left with my friend Nancy who had kindly taken me to the appointment and is now in the other room while I am trying to sleep which is proving to be impossible.
This is crazy. Too crazy. I can manage not to completely panic most of the time, to have a very positive attitude some of the time, to get distracted a bunch of the time, but i don’t really know how to stop this edge of panic thing. last time it happened, i took ativan and it worked. i will probably end up taking one soon if writing doesn’t work. it has helped to not be alone. susan came over all day yesterday. tc came at night and susan decided to stay too. k took tomorrow and friday off. nancy is here now. tc is coming back on thursday and maybe tess too. d is coming over on sunday. my folks are coming on sunday night. lorena is helping us to decode medical speak and giving us good questions to ask at the consultation tomorrow. thanks everybody.
Whatever this turns out to be, I will fight it. It is what I do and what I have always done. It is my way.
Thanks to everyone who has left such nice comments and sent emails and have been coming over to babysit me while all this is going on. i appreciate it more than i can say even if i don’t respond individually. i am kind of low on energy at the moment.
I will still have hope that it is a really bad virus or cat scratch fever. Just because the doc was so glum doesn’t necessarily mean he is right. His face and his attitude made me way more scared than I think I otherwise would have been, but after reading around on the internet (not my best idea), I may have ended up just as freaked out anyway. I am thankful for his honesty even if it is making it harder to think positively. I suppose that will make my cat scratch fever diagnosis all the more sweet.
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8 comments September 7th, 2007 1,471 views
I am terrified. There is a big lump in my neck above my collarbone and another in my armpit. Will get a biopsy on wednesday. doc thinks it is most likely lymphoma. i don’t know what to do.
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Tags: life
4 comments July 16th, 2007 1,046 views
I am at Lake Merrit, about half way around. Online. This is cool. I am trying to type with 2 thumbs. Better than last time I tried. Still appreciating David Pogue’s punctuation shortcut every time I use it.
It is so nice to be able to leave the house again. The water helps my brain. Easier to think now. Stopped to look at birds that are right here in front of this bench. This rocks! There is no wifi here but I am on the internet. Magic.
Too hard to sit still anymore. Gotta go.
At the bus stop now on MacArthur Blvd. It is still loud in my head but better than before. It is time to go home now. It is very hard to think. Someone who lives near this bus stop has unprotected wifi. Thank you stranger.
Back home now. The bus was crowded. No seats. Standing in front of the yellow line and the driver kept letting more people on at every stop. I don’t think that is legal. Usually the driver tells people to get behind the yellow line. Didn’t have to get off before my stop. That is a rare and beautiful thing.
I wish I could think. Or work. Or play. Or read. At least I got lots of work done this morning. Another reason why it is so much better to work for myself than for someone else. If I worked somewhere else, the morning hours would be lost and commuting would have zapped all the energy that I would have had for working.
I find myself wishing there was a copy of BBedit on the iphone that would sync w/my computer. I notice that I compare it to a computer more than to another phone. What would it be like to code on the iphone? Hard to imagine. I would have to get way faster at typing and it is hard to even imagine what having the numbers and symbols and letters on different keyboards would be like. I didn’t even notice if there were curly braces on any of them. You never really appreciate curly braces until they are gone. It is a cool phone, but definitely not a laptop replacement.
I was thinking about strange things on my way home from the bus stop. At one point, I rolled up my sweatshirt sleeve and somehow ended up holding a bee in the opposite hand. I flicked it off of me. I am allergic to bees. Not very bad, but it seems to get worse every time. When I was younger, just a little sting and maybe swelling. The last couple of times huge swelling and the very last time I got a fever too. I haven’t been stung by a bee in a long time.
I like to watch bees and to think about bees, but not to hold them. I like the way they fly around flowers. Up and down, back and forth, fly away and then come back again. It looks random, but I don’t think it is. It is their way of doing things and it works. They get the job done. Very different than ants. Ants like straight lines. When they are doing their job, they don’t look random. They look very organized. I don’t like watching ants. It stresses me out. Part of it is that I hate killing them and sometimes have to when they are crawling up my kitchen wall in a line. It is not an ant friendly world. There is no way I can feel right about wiping out an entire community in less than a minute but I do it anyway. What a strange world.
Humans as a species sometimes remind me of green belts in karate. It is a transitional period of having knowledge and power, but not necessarily knowing how to use it. Sparring with a green belt is much scarier than sparring a black belt. I know I am safe sparring with a black belt. I have been hurt more than once sparring a green belt. With the exception of the occasional teenaged boy who has something to prove, they usually don’t mean to hurt anyone but they can strike hard and are still learning to control their techniques in an amped up situation.
Humans have enough knowledge to make theories based on things that they don’t have complete information about. How do I know I am better than an ant? What gives me the right to decide that they have to die because I don’t like having them in my house? Why do we think we are the most intelligent species? If you check the facts, we are obviously not. Without humans, there is balance and an ecosystem that works very well. We kill each other and we kill our planet and it has gone on for so long that it is hard to see another way to live. We don’t know how to live in a different kind of world. I am sure there are human societies in the world that know how, but if we find them we will steal their land and try to make them be like us. Welcome to PMS week.
The other reason that I don’t like watching ants is because I can’t do it without thinking. It is like trying to read in the same room where there is an interesting tv show on. When I watch a bee, it is just part of everything. Something to anchor my attention in the background. Keeps me connected to the world while still being able to leave it. I like that.
Filed under: Autism / Asperger's, Geekery, Random
Tags: ramble
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