Approaching two years

I just returned from the College Art Association conference. It was at this confetence two years ago that I got my first indication that I had cancer. My dermatologist’s office called me wanting me to come in to the office as soon as I possibly could to discuss the growth removed the previous week. I’m not stupid. I knew what it meant.

Despite this, I was able to give my panel presentation. Functional denial is an incredibly powerful force.

Last year I was deep in the middle of the worst of the side effects. I was barely able to travel. And I was staying with K with whom things were strained and tensions high because of how bad shape I was in the last time I visited. I skipped nearly the whole conference, only showing up to moderate my panel. And i took cabs to and from, despite the fact that where i was staying was on the same subway line as the conference. I remember walking around the LA convention center baffled and exhausted — trying to find the room where we were supposed to speak.

This year was starkly different. I was only in for two days of the four day conference but I went to many panels and was actively engaged in the conversation. My presentation was full of energy. And I really felt good.

I’m ten days from my official cancerversary of February 22nd. But in a way the conference is a premonition of my milestone, much like the first phone call during the conference was a harbinger of the turmoil and illness to follow.

I get my two-year scans on the 18th and I meet with my dermatologist on the 22nd exactly two years from when I was in his office and he broke the bad news to me. Two years is a really significant point in the timeline. My understanding  is that most melanoma reoccurs at around 18 months. That is where the graph peaks. And it dips pretty agressively around 24 months. The curve never drops to zero, so the calculus means the area under the curve ends up adding up when you factor in a lifetime along the x-axis, but it is as close as it is going to get.

I am mostly excited and relieved, but a small part of me is waiting to exhale until after the results of the scans come back. I fully expect them to be negative, but then I was also sure that my sentinel lymph node biopsy would be negative: the odds were 85% that it would be negative and only a 15% chance that it would have made it to my lymph nodes. And yet it was there, 15% be damned.

So I’m getting ready to be hopeful, but I’m being cautious about letting my emotions move into that space yet. Even as i finish titrating off of Lexapro with my last 1/4 dose tomorrow, (leaving Klonopin as the only drug I am still on), even as I make it through this memory laden conference, I still have the scans. Then I can finish this transition and move into a new phase.

I’m off Seroquel!

I just had to ask O what the drug’s name was. Her response “have you already repressed it!?!?.” We both laughed.

I stop taking the Seroquel tonight. I was on a very small dose: 12.5mg, which is half of the smallest pill available. Doses range up to 400mg or 600mg, so it was very small. But it had its effects, and for me, it is a huge step towards moving on.

Remembering to take my drugs every morning and every evening is one of the central markers, and anxieties of my day. Once every three weeks or so I forget, and my day is usually pretty bad (whether I remember that I forgot, or not — it’s not psychological… I mean it is psychological… i mean… LOL)

I met with my psychiatrist today and he approved dropping the seroquel. He also wanted me to start titrating off of the Lexapro starting tomorrow morning. I’m going to Berlin the day after tomorrow, and I suggested that between the jet lag, and how dark Berlin is in the winter, I would probably be best coming off the Lexapro when I come back. He agreed.

So one down, one goes down when I get back from Berlin, and the other starts coming down when I am done with the second.

Hopefully I sleep well tonight (esp as the seroquel makes me very drowsy)

San Francisco Bound

O and I are leaving today for San Francisco and Sacramento, followed by 5 weeks in Portland. Finishing where I started. We have a house swap. Our 1.5 bedroom apartment in brooklyn for a 5 bedroom house in Belmont with a sauna in the backyard. Such a different quality of life. We get to play Portland for a little bit, while the drugs leave my system. 3.5 weeks left

back in my own bed

I just woke up from a good night’s sleep. I’m still achy and sick to my stomach. But I slept in my own bed. And the bed felt huge, even with O next to me.

The last two nights we spent upstate producing and installing her solo show. The college has some old house that functions as a visiting scholars and faculty ‘guest house.’ I have stayed in these kinds of houses at small New England colleges before. Usually they are spartan, but comfortable. Not this time.

Where to begin…

The bed. The bed was a single bed, that sagged way down in the middle. Single. As in: not twin. We could not lie on our backs at the same time, or our shoulders would push one of us out of the bed.

Sleeping on the couch. Where I moved both nights. But without any blanket or sheet. And the couch was just too short to actually stretch out on. Why do they make big couches that are too small for people to sleep on.

The sheets. The bottom sheet inexplicably only covered 75% of the bed. So our lower legs and feet were resting against the old mattress. This was probably the weirdest part.

The noise. The college rents(?) the back part of the house to a family. A very loud family, with a fighting husband and wife, and a crying kid. At first we thought it was the house next door, but then realized it was coming from behind the house through the paper thin walls. We left the city, went ot the country, and it was much louder than my apartment.

The smell. This one took a while to place. The whole house smelled almost exactly like my Interferon. When I inject, I use alcohol wipes, and so the smell could have been that. But there is a distinct smell from the whole injection process. And the house smelled like it.

The food poisoning. This one’s not the house’s fault. I ate something that didn’t sit well. I woke up in the middle of the night with intense stomach/intestinal pain. Was burping up, but couldn’t puke. Spent long enough on the crapper that I might have fallen asleep (unclear). All I got were a little pile of raisinettes. I wiped my ass, and the tissue was covered in blood. I had been really upset by the intense pain (worried it was an appendix, or something) but seeing a handful of bloody toilet paper set me over the edge. 2am, and I was hysterical. Somehow (drugs, O, exhaustion) I fell asleep. I slept until 130 the next afternoon. Felt sick all day.

Add to that a bunch of bloody noses.

I am just now eating some oatmeal. The first really hearty meal I have taken with a real hunger.

Facemask as tactical device

I just flew to and from Los Angeles for a conference. As per my doctor’s orders I wore a facemask and used my neti pot upon landing. I didn’t get sick, which was wonderful.

In the process I discovered that my facemask was a great tactical device in the struggle for space on the airplane. The first flight was empty. I had a window seat, and there was someone sitting in the aisle. I put my mask on, looked out the window for a minute or so, and when I looked back, the guy sitting in the aisle seat was gone. Disappeared. Went and sat at some other aisle seat. So I got a whole row, and slept well. The thing that he didn’t get is that I wasn’t sick. I was not contagious. I wasn’t wearing the mask to protect him, I was wearing it to protect me. I was afraid of *his* germs!

Things falling apart

Broken iPod Touch

I just broke my iPod, and found out that my mileage accounts have been cleared out on a technicality, all within 60 minutes…

At first the iPod breaking didn’t phase me. Am I that meditative? Am I that drugged up?

It is just an object. There is no data lost. The screen is cracked, but I can still navigate and retrieve what little data is on there.

Then I started to feel bad. Defeated, or something. I sat down to make a plane ticket to Portland for July for my last month of IFN injection. O and I are going to PDX for a better climate for my last month of injections. If all goes well and I don’t have to have any breaks (cross my fingers) I will be done on Thursday July 23rd.

In two weeks, I will have four months before I go to Portland. Somehow going to Portland feels okay to substitute for ‘being finished’ even though there will be another three or four weeks of injection there.

I figured that I was flexible with dates, and I had a bunch of mileage to use, so I fumbled my way through the password retrieval process, only to find out that I had *no* miles. None. All cleared out. All 104,000 miles cleared out. On a technicality of a expiration policy that i was never told about. I did the same on my United mileage account, and same story, though no love lost there, as every flight I have taken with them has been miserable, and I don’t even know if I had enough for a full ticket (with the free ticket inflation these days.)

Expired Miles

Expired Miles

It all sucked really badly. I felt really defeated. And overwhelmed in the face of bureaucratic logistics… is it worth all the headache of calling customer service, trying to get through to a human, and then the physical and emotional trauma of having to play the cancer card. To tell them that I have not been able to fly, so my miles were zeroed out for inactivity, and now i need my miles to finish my drug treatment. I’m getting dysesthesia in my hands as I type this, just thinking about it.

The thing is what I am really afraid of is that something might happen like this on a bigger scale. What if the dollar were to tumble so drastically, my bank account might as well be filled with Rubles? What if the City of New York is so hard pressed in debt that they drop all untenured faculty. I’ve been seeing some of this happening: My 401K from school (which I look at once a year tops) has half as much in it as when I last looked. O just got a pseudo-rejection letter from an academic job search, saying that despite a full slate of excellent candidates, they have decided to terminate their search without hire — They don’t have any money. Job searches are being canceled halfway through. I am trying to get my work into a gallery right at the worst possible time in nearly two decades. And I might be buying an apartment in my building at a moment when buyers and sellers are at a standoff over prices, with buyers refusing to pay current prices, and sellers refusing to admit that their apartments are worth 20 percent less than they were last last year. Admittedly, if I do buy the apartment, it will be at a significant ‘insider’ discount as per the byzantine NYC condo conversion guidelines.

first they take the miles and make them disappear. then they take the dollars and turn them into rubles, and back again. I should rereread Master and the Marguerita soon

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.

some up some down

The good news for today is that I didn’t have any pins and needles.  I stayed inside most of the day.  The book is done.  And I didn’t do any public speaking.  And I was chill, and chilled.

The bad news is that my body continues to fall apart.  I woke up with a swollen something-or-other in my right cheek.  It is right above the back of my jawbone.  It feels like it is 10mm in diameter, but its probably smaller.  I have a corresponding lesion on my right side of my tongue.   I think I have a lesion in my left nostril.

And most humiliatingly, I have a large mole on my ass that is raw all of a sudden.  It hurts really bad.  It seems almost like it is bleeding or something.  My Dermatologist has checked it several times and cleared it each time.  So I’m not worried that it is a Melanoma.  But it hurts, and I worry about my ability to heal.  And the worst part is that I can’t see it.  I tried taking pictures, but that didn’t really work.  Try aiming a point and shoot camera in macro mode at your ass really close up and try to get results…  it doesn’t work very well!

accepting that i was ‘the crazy homeless street kid’

Send to a friend from grad school after i no-showed b/c of a pins and needles attack on the streets of SF

Sorry I never made it to meet you yesterday, but it was not for lack of effort or desire.  I had a meeting that ran a little bit late in Berkeley.  I hopped on the BART, and caught all the trains and all the transfers, i called to let you know i might be late, but got caught off when the train went back underground.  That was probably a surreal voicemail to arrive to today.

I got out at 8th st, and immediately caught a bus going in the right direction.  I even asked the driver to confirm that it went straight down 8th st.  but then after 8 or so stops, it turned right, and i got confused, and got off the bus.  I was lost and confused.  I was meeting O and her cousin, and managed to give them my address 11th and Rhode Island, but had no idea when they would be coming.

I can’t remember if I told you about this when we saw each other briefly at Berkeley, and if so, forgive the redundancy.  I have been in treatment for cancer (Melanoma Stage III) for 9 months.  Surgeries aside, I’m 4 months into a 12 month drug regimen. The drug (Inteferon) makes my body feel terrible in all kinds of ways, but the worst side effect is that I have heat related panic attacks where I get painful pins and needles all over my body. I kind of go fetal in a paroxyism of pain, scratching, and heat.

So I’m having this building panic attack as I’m rolling down 8th st on the bus, scratching at every skin surface, pressing my ice pack against my chest (I keep an ice pack with me). The woman next to me moved to the other side of the bus. There is nothing quite so degrading as having someone get up from the seat next to you, and move across the aisle to another seat away from you b/c they think you might be contagious, or crazy, or violent.

When I got off the bus I was in full blown pins and needles mode. I dropped my bag and a heavy box of flyers for the book, and took my shirt off and tried to calm myself down. the icepack i keep with me had lost its cool an hour earlier. meditating in half lotus didn’t work, so i tried lying down on the concrete, which is cold. and then this security guard kept circling on his bicycle.  after five or so minutes he came up and told me i couldn’t lie down.  I read him the riot act about how I had cancer and that I had heat related symptoms, and i needed to get cold by lying on the concrete.  He didn’t give a shit.  He brought someone over, and they started talking and pointing at me.  I panicked and ran around the corner.  Then I panicked even more because I wasn’t in a place where O could find me, I didn’t know what her cousin’s car looked like, and she wasn’t picking up her cell phone.

I’m in hysterical tears, huddling shirtless with a box and a shopping bag with my stuff.  Scratching at my body.  Freaking out.  And this more formal security guard walks around the corner, and approaches me.  He asked me if I was okay, and between tears i said no.  I told him what had happened, and how I needed to get back to that corner, but was scared of his associate.  I told him about the cancer.

I was beginning to realize something weird was happening w/ the logic of cancer, illness, homelessness, and schizophrenia.  I could tell he was kind of not believing me, and I pulled out my business card to give it to him to prove I was a “real person” or something.  He held it, but didn’t look, and said something like “it’s cool man, i know you, i’ve seen you around.” and then i got instantly clearheaded and went off on him.  I gave him a whole miniature lecture on why he had never seen me, how i was a professor in NYC, that I was here on business, and just gave a lecture at berkeley.  And he was just nodding.  And I realized there was *no way* i could convince him I wasn’t a homeless schizophrenic.  Which is the condition (or anti-condition) of the schizophrenic, right?

He was good, though.  used to dealing with the crazies.  and for that moment, i accepted that i was ‘the crazy homeless street kid.’  he said that i should go back to that other corner and wait for my “friend” to pick me up.  he told me i should just sit on the other side of the street, as the tenants he represented got paranoid about “stuff.”  and he reached out and shook my hand: “we’re cool, right?”

I went back to the corner, and shuffled over to the bus stop on the opposite corner. they can’t kick me out of a public bus stop, right?  Finally, O showed up, and my attack was over.

As you said in your message (which i didn’t get until after it all was over) it is tricky to get there.  I guess 8th ends, then starts again, and that the southern part is quite confusing, and hard to get to.  So this is a long, round about way of saying that I really wished I could have met up, and seen your space, etc.  but sometimes life gets in the way.  This has been a year of life getting in the way of life.


Naked on the Street in SF

my body is kind of falling apart under the strain of the drug treatment. it is strange using words like lesion, immunosuppressed, panic attacks, etc, in daily conversation.  i am in CA right now and I wore a mask on the plane.  drs orders.  the only other time i flew, when i went to banff this august, i got more sick than i have ever been.

I’m getting all of these lesions on my “extremities.”  Apparently the drugs slow the blood flow to the capilaries in my fingers, toes, tongue, etc.  And I get what is called Acral Arethema, which are red spots that sometimes turn into lesions.

I know my white blood cell count (and it is always too low)

And I am making art with words

i have never felt closer to Felix Gonzalez Torres.

as if that was not enough fun, I have been having more and more heat and panic related pins and needles attacks.  it is like my entire skin rebels against me and i feel like i have excruciatingly painful waves of pinpricks all up and down my body.  these last for as little as 30 seconds, and as long as 25 minutes.  there are five things that i can do to calm the symptoms (in order of effectiveness and feasability): ice, binge eating (esp chocolate ice cream), meditation, watching-richard-pryor-et-all-on-youtube, massage, and exercise.

several times in the last few days i have had serious attacks on the street.  in nyc when this happens, i strip down to my undershirt, or unbutton my shirt all the way, or sometimes take it off entirely.  this gets me two kinds of dirty looks.  most people give me the “you are being indecent look,” and a few people give me indecent “i want you” looks.  both of them are so mislead.

but here in SF, no one gives a shit that i am sitting on the street with my shirt off, meditating in half-lotus.  i’m staying in the haight, so i’m just another street punk.  i’m a bit more well dressed, but when it comes down to it, people here are just so used to ignoring everyone sitting on the street, they just ignore me.

i discovered that i could get colder by actually lying down on the sidewalk, b/c the sidewalk stays quite cold.  so twice now i have pulled off my shirt, and laid down on the sidewalk for 5 to 10 minutes until the pins and needles have passed.  only one person noticed or asked about me. he was an older man (70+) who wanted to make sure i was okay.  i was in a nicer part of town at that moment.  he had probably been lying on the ground once, not okay, and had wished someone would help him.

it is strange having the afflictions of the old.  i am visiting O’s grandmother who just had some heart related medical flare ups.  she is tired a lot, and can’t drink anymore (a glass of white wine with dinner was her favorite.)  we are going to get along great.  we are both shell shocked, tired, and wish we could get drunk. but can’t.

but despite all of that, my spirits remain high.  i still have 8 months of this treatment (i’ve done 4 so far).  every once in a while i cry hard.  but this is good.  the rest of the time all of the other drugs, my meditation, and my own resilience keep me moving forward.

and there are things that make me happy: the book is almost done. (i’m pretty sure i’ve mentioned the book here.)  as in, all chapters should be submitted to the proofreader be EOD today!  it goes to the printer on wednesday. almost all the book-making work has been done by my assistant and a ex-nytimes InDesign expert i hired.  It is strange not being able to do the work myself, but i’m glad that it is being finished, as it is one of the largest sources of panic over the last few months.