I had a major freak out today

I had been building up to this.

i get this sense from people, and its not my paranoia (b/c others have confirmed it) that they think I am healthy, and or I am getting away with something. having my cake and eating it too. being on sick leave, but still being productive.

of course the whole effort to continue working as if i am normal is a classic defense mechanism. “if i can keep working, i will know i am okay.” or “if people keep seeing me release things, i won’t look weak or sick.”

it is so demoralizing to have that backfire so badly, as it seems to be right now. it is awful to have to prove how sick i am to someone. And of course, its impossible. Totally impossible. But there I was, on the phone, trying to explain every facet of how much pain and anxiety and discomfort and nausea I am in. I had to describe my mouth lesions, and the pain of eating. I had to explain that the lesions and joint pain from Reiter’s syndrome is the same pain that full-blown AIDS patients get. I had to rehearse the whole thing on the phone today. I had to prove my pain.

Part of the problem is that I am perceived as being productive, and therefore healthy. But my productivity is completely derived from my crew. All I do is make a few decisions here and there, stumble around scratching my legs, forget to take my drugs, and generally tire myself out and then go home exhausted. Okay, that’s a bit of an exaggeration, but the point is, its not me, its my crew. And *then* the conversation turns into jealousy and/or resentment that I have assistants.

O had a major intervention with me tonight. I had been realizing that I had a problem for a few weeks, but I had no idea what to do about it. I have such a hard time saying no. We worked through a lot of tactics and strategies.

I am writing to say I am scaling back. Drastically. I only have 12 more weeks. 8 1/2 until I go to portland to finish up the treatment.

I put an autoresponder on my email. If you write me, you will get it.

I am only going in to the studio one day a week, at most.

I am not going to start anything new. Nothing. And I am going to finish things that are more than 75% done.

I am going to stop releasing or publishing anything, as people seem to equate me releasing new work with me being healthy.

I am going to focus my energy on riding my bicycle, reading at the library, and meditating.


This is *so* hard to do. Partly write this here so you all understand what I am going through, and also so you know why i may not respond to email, and also to help support me and keep me in check.

It is all a front

On Mar 15, 2009, at 12:27 PM, PD wrote:

i think b/c your studio work seems productive i assumed that you were feeling better. but i know you well enough to know that i might have been off on that assumption.

Yeah, duh! Of course it is all a front. It is all a way of me thinking that I am okay. Studio production is up, therefore I must be okay. Both telling the outside world, and telling myself. If I keep acting like I am fine I will be fine. (Lie.)

But these last two months have been really hard. And i’ve worn myself down.

And I’m pretty much going to spend the day in bed today. sick to my stomach. exhausted. my skin is falling apart.

50,000 words – should I make this public?

I’ve been writing on this blog for 8 months (exactly). It has been a bit more than a year since I was diagnosed. I have written 173 posts, with a total word count of more than 50,000, and nearly 100 images.

I am wondering if I should make this public. Or at least more public. Not that I am going to blast announcement emails all over the place, but maybe just a link in my bio, or a link off of my homepage. The bizarre thing is that is very much in line with my artwork. Life art on the Internet. I don’t want to make an art project out of my cancer, but I do think that I am putting some of the same creative energy into it, sometimes. Othertimes, I am just bitching, or showing off the holes in my mouth.

Please chime in on the comments.  I’m going back and forth on this.

The Cancer Card (Literally)

In late December, inspired by Adrian Piper, I made a card to help communicate to people what was going on with me. Actually, I made two, but I have only printed one. One says “I HAVE CANCER / DO YOU MIND / GIVING UP YOUR SEAT / THANK YOU.” That one is for the difficulty of trying to get a seat on a crowded train – because I *look* fine on first impression. Closer inspection indicates otherwise…

The other one says “I HAVE CANCER / THESE ARE SIDE EFFECTS OF THE DRUGS / THIS IS NOT AN ATTEMPT TO START CONVERSATION / TALKING ABOUT THE SYMPTOMS MAKES THEM WORSE.” This is for when I am having a dysesthesia attack, and am scratching and writhing about. People stare at me, which makes it worse. Or they get up and move to the other side of the bus or train. This will maybe make them realize I am not dangerous, crazy, contagious, and/or a terrorist (LOL).

For the most part, I try to ride the subway on off peak hours. I’ve had to take the subway in for a few 9AM appointments and meetings, and things get crazy.

What is interesting, is that so far the “give up your seat” card has not worked at all. If anything it has been a hinderance. I think people think I am trying to collect alms from my poetry or something. People don’t even look at me, or they just stare.

The only good thing is that it alleviates the famous Stanley Milgram effect where the person asking experiences huge anxiety.

So far one younger Latino man got up for me. One white man didn’t but when the woman next to him got up he got up too and they both stood. Since then I have had three white men shake their heads at me. I thought I would as men because they are tougher or something. But they seem to largely be unsympathetic assholes. Which is the reputation of the NYC male.

When they say no I repeat to them my situation. It just goes right through them. Today I looked this williamsburg dude in the face after he said no twice and called him heartless and selfish. Maybe I need a different card to give out. One for people who say no. That lists all of my symptoms. How long my treatment goes on for. My prognosis. Etc. About how I may look sound but I’m not. I am a grandma inside. Weak, tired, carrying more drugs, ice packs, and healthcare paraphanalia in my bag than clothes or books.

This city is heartless.


6 weeks later, I have given up on the card. It is a nice little bit of poetry, but people think I am trying to beg for money. I have developed a new strategy. It is two part: 1. avoid taking the train when there isn’t going to be a seat on it. 2. quickly identify the youngest person who is not asleep, and who is not listening to their iPod and ask them. The other thing I have started to do is to say “I am sick” first. Then “I have cancer, it is hard for me to stand for long periods, can I please have your seat.”

This has had a pretty high success rate. Often people seem resentful, but they do it. I said it all to one dude, and he gruffly responded “whaddayawantmetodoaboutit?” And this glammed out black chick standing up next to him with crazy hair wearing a remarkable fur coat and heels immediately said “he needs to sit. get up and let him sit.” and he did it. resentfully.

The hardest part, actually, is getting on trains that are so cramped during rush hour that I can’t even make my way to find someone who I could ask to get up. I barely make it through those rides. But I make it, and I’m proud of that.

And then there was the time that I had just negotiated for a seat. It was right next to the door. And this woman got on and stood in front of me. My face was right at her belly level, and I noticed she was just starting to show a pregnancy. After maybe 15 seconds she said “can i have your seat, or i’m going to be sick.” I looked at her, confused, regrouped, stood up, and said “you may have my seat, but you should know that I am probably the only person on this train who is more sick than you.” I went and stood in the corner. That sounds really passive aggressive, but that wasn’t how it came out. It was more of an exasperation with entitlement, and the Milgram effect — even though I had sought out and negotiated for that seat, I was still willing to give it up immediately when asked.

Inteferon Dreams

I restarted my IFN last night.  My mom arrived yesterday.  This is actually a coincidence.  But it was really nice to have her here while I tried to pretend i wasn’t nervous.  I can’t quite tell whether i was actually calm, or was in denail.  previously it was clearly denial, w/ a lot of pacing.  but today, after a week of meditating, and my mom’s comforting and distracting presence, i think i might actually have been somewhere in the middle.  close enough to the middle, that I don’t know.

I just woke up.  Its 7:30AM.  I have a headache.  I had the usual chills, though less fever than normal. woke at 4:30, and only kind of slept after that.

Clearly my unconscious was churning through the implications of restarting the IFN.  I had a series of dreams about IFN, science, and weakness.  One I only remember as me on a mountain bike, trying to climb a hill, and getting passed and yelled at: this is about the bully who rides in Prospect Park, and who yelled at me last time i rode there.  I remember one about camping with my mother in snow (she has car camped w/ me once or twice tops.)  But the best one was another naked school dream.

I was in the audience at the front of a lecture hall listening to a lecture on the immune system.  It was a young female professor.  She went through all of the obvious functions of the immune system, the lymph nodes, whats in blood, red blood cells, white blood cells, platelets, and some other stuff that i remember from my many bloodwork results (billyrubin, leukocytes, neutraphil, etc).  Then she talked about Interferons, which stimulate neutrophil?  I forget.  I was repeating the pseudo-high school science lesson i’ve gotten over the course of this process.  Things I never really knew.

Then the lecture happened again, except this time it was a song i knew.  But only kindof.  I was singing along to the lyrics to comfort myself, b/c at the same time it was the song, it was also the same immune system lecture.  The young co-eds to my left and right were indignant — I mean, I am tone deaf, and didn’t know half of the lyrics to whatever song it was.  One of them (on the left) said, “do you actually know this song?” in a tone that made it clear she was really saying “shut up asshole.”  When she got to the part about Inteferons, and the side effects of Interferon therapy, and listed them all, and talked about how hard it was, i said out loud “I have that.”  And I started crying.

At that moment, the class was dismissed, and the co-eds kind of dissappeared, but kind of registered their surprise and also disgust/fear of me. I get up, and realize that i’m only wearing a t-shirt.  chest is covered, but the choice bits are poking out the bottom (LOL).  as per usual with naked dreams, i’m not that embarrassed, just concerned about the difficulties it sets up.  I try to get out of the lecture hall, which actually is surrounded by an airport like structure, with big pillars, and caverns, but no gates or planes.

Somehow I realize that I’m supposed to teach the same class for the third time around.  I hear “well, if your such an expert, why don’t you just teach the class.”  I try to escape via the caverns in the edges of the building, while someone comes in singing with a choir from the entrance door, and makes their way to the dias at the front of the room.  They are singing an a capella motown/gospel song; all i could make out was the refrain: “Here comes the Doctor.  Here comes the Doctor.”

I escape to the outside (maybe i magically get pants, maybe not, i can’t remember.) The young co-ed on my right comes up to me on the path away from the big building and touches me with a big rolled up sheet of paper.  She offers it to me.  I open it.  It is that 2 foot by 3 foot size of paper that comes in pads and is used in classrooms in lieu of a chalkboard/whiteboard.  There are words on it written in in black whiteboard marker.  I don’t remember what it said.

I’m hungry now.  I’m starting to get some fever action.  Going to eat cereal and lie back down.

Saying “I Love You”

Since the diagnosis i feel like i have an increased capacity to love people, and for people to love me.  or, put another way, i’m more likely to tell people i love them, and they to tell me.  people whom i very close to (but never said it), but also people whom this ordeal brought me closer to.

I don’t think it is the fear that i might not get the chance to say it b/c i might die, but rather that the possibility that i may die spurs me to do things I really wanted to do anyway.  its not that the diagnosis has me backed into a corner, but rather that it has become an opportunity to take advantage of.

I guess I became much more comfortable with the idea of loving platonically in the last few years.  I’m not sure when it happened, but it did.  I became much more comfortable with saying it, even to my parents.  I mean, of course, I love my parents, but I think that in the last few years something changed about the way I related to the phrase that allowed me to really mean it.  Or to recognize that emotion as love, though a different kind of love than romantic love.

So I got more used to saying it, and the idea of it.

Correspondingly, my cancer caused my friends to tell me they loved me.  I could speculate on causes: that it was the fear that I might die and they might never be able to tell me, or that the *realness* of the cancer allowed them to break out of their fear, or soomething else equally speculative.  But I will simply say that it has happened, and it is comforting.