LBnuke

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!

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.

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.

I am starting to wonder if it is possible for me to really have a “normal” life. Things are so much better than before and my meds are finally working again, but even though I can do so many more things now, I am realizing that my limits and tolerance are still pretty low.

Things that have been very hard or impossible to do for the past year:

• Reading
• Working
• Doing martial arts
• Leaving the house
• Playing warcrack
• Being around people
• Traveling

Almost all of those things are easier now, but I still can’t do that many of them without getting overwhelmed. When I get overwhelmed, I can’t think and when I can’t think, I am back to not being able to do anything anymore. It is occurring to me that this will not change. I am not sure why I keep thinking that it will. Things have always been this way as long as I can remember, no matter what meds I am taking and how well they are working.

The things that are hardest sometimes change from one med to the next, but there is never a time when I can really do things like other people can. It can be argued that there are things that I can do better than a lot of people can and I am very lucky for that, but no matter how much I have learned to appreciate my ‘different’ brain, there is still a part of me that is very jealous of how easy it is for most people to do things that completely wear me out or that I can not do at all. I wish I didn’t feel like that, but it is hard not to.

I wish I could be around people without getting confused and exhausted trying to figure out what to do, what to say, when to say it, all while paying attention to and remembering what is going on around me and what everyone else is saying, and how everything everyone is saying relates to the things that other people are saying. People do this every minute of every day as though it was not complicated at all. I don’t understand. I can’t understand. I hate not understanding.

I want to work. I have to work because we need money. We have a house and 4 cats and I have an expensive computer habit to pay for. I love what I do, but don’t even have any idea if I am making money, losing money, or breaking even. I want to do martial arts, but am still finding it too hard to be around people doing something so intense. I keep trying to think of other ways and places to do it, but I can’t think of a way to do it without other people. I wish it was like in the old days where some kind Sensei would take me under their wing and I would wash their car for them. Mr. Miyagi, where are you?

If I work all day, or even worse, try to work all day and don’t get anything done, then I can’t even get out of the house. If I don’t get out of the house, I can’t think. If I can’t think, I can’t do anything. It is a vicious cycle that repeats forever in some form or other.

Lately, there are so many things going on and it is getting harder and harder to do any of them. It is not the meds this time. It is just my brain being itself. I don’t know what to do. I don’t know how to have less things. There are work things and house things and cat things and travel things and people things and non-work website things and computer things and all of the other random things that seem to pop up every day.

I can work, but it is very hard to concentrate. I have been able to read a little. I have been able to get out of the house much better, but it has been getting harder and harder as there are more and more things. I get too confused. I can’t do anything in the house and can’t leave it. Sucks.

It is not all bad. One very fun thing has been teaching Karen to play warcrack. She is on a 10 day trial account and we have been wandering Azeroth together as a gnome mage (K) and a dwarf rogue (me). I think we are level 7. It is fun to play with K. Today she sent me a funny description of how she described what playing is like to a friend of hers:

“I draw the enemies out by frostballing them, then I fireball them while Lori is stabbing them and then she beats them to death.”

Good clean fun

A couple of weeks ago, I was wondering when my life would be back to normal. This past weekend, it bulldozed past normal and entered into surreality. Friday night I was still my regular self. Karen went to the dyke march and then out dancing at Mango with Lorena and Tess, and I stayed home because I didn’t want to be around so many people.

On Sunday, the day of the pride parade, I decided that I wanted to go. Not just go. I wanted to MARCH IN THE PARADE with our temple (or at least what might be our temple if we ever get around to checking it out more). I had a good time. It is actually less crowded in the parade than watching it from the sidelines. There was this Jewish youth group in front of us that were all wearing bright orange shirts. Fresh squeezed orange jews. Sorry, I tried not to write that, but I couldn’t resist. Every time the parade stopped, they would perform a same sex jewish wedding under a rainbow flag chuppah, smash a plastic cup wrapped in a napkin, and then run around in circles singing. Made me happy.

I was the sole member of the queer autistic jew contingent. I was wearing my autistic planet t-shirt to create some queer autistic visibility. Not exactly sure why, but it is San Francisco and every other subcategory of subcategory is represented. Seems appropriate that it was a contingent of one.

After the parade, K and I went into the crowd to find some food and try to meet Lorena and Tess. In the crowd, I reverted to my normal self and started gradually getting overwhelmed until I couldn’t think at all. We walked all the way to 16th St. and Mission BART so that we could get a seat before it got totally crowded at Civic Center. We were completely spent by the time we got back home and took a nap for a couple of hours. It was great! It is very rare that I can take naps during the day.

Last night, I went back to Cuong Nhu class for the first time since before my medicine hell started. I was kind of scared because there is a lot to process there and other people and instructions. My Sensei had told me that I can take it slow and do stuff by myself. I had thought I might just go and watch, but even before I left the house, I realized that there was no chance that I was going to enter that dojo and not kick something! I like to kick things. I kicked air

It was nice to see everybody. There was a new white belt that I had never met before and two of our white belts had become green belts. Color belts are especially exciting in Cuong Nhu because there are only 4 of them until 5th degree black belt. White, green, brown, and black. In between, there are 2 stripes of the next color belt sewed onto your current belt. I think I am permanently stuck at one black stripe, but I don’t even care. At least last night I didn’t. I was so happy to be back there.

I was able to do more than I thought I would. I knew I would remember basic techniques and kata because I have been doing them for over 10 years and they are beyond the part of my brain that has to think. I start forgetting moves about half way through the more advanced katas, but I will probably remember after practicing a few times. The part that surprised me was that I could actually participate in the group as long as we were doing separate things.

During the first part of class, we did drills up and down the dojo where each rank gets a different set of moves to do. I was in my own group even though Rosanne is a brown belt too. There was no way I could follow the instructions she was getting. Long series of moves. Sensei Amy was very kind to me and kept mine to 3 moves or less. I think that was about my maximum memory span. I am not sure how she knew that too. After that, we did kata and I practiced the basic ones. The rest are for next time I think.

About 15 minutes before the water break, my brain was starting to crap out. I started forgetting moves to a kata that I had just done three times in a row without a problem. I got very confused about directions and couldn’t focus at all. I would forget what I was doing in between moves. I thought about leaving, but I knew we were having a break soon, so I stayed. I considered staying after the break. People were practicing self defense techniques and I was going to practice something by myself, but everything was too confusing. I decided to leave while I was still able to drive home.

By the time I got home, I couldn’t think at all, but I didn’t really care.