Month: November 2008

Midpoint / Birthday

I’m thinking of doing some Enron Accounting, and coming up with some framework in which my Birthday (Dec 22) is halfway through my treatment.  So I can have a party.

I just completed week 12 (of 48).  By my birthday I will be in week 19 of 48.  BUT if you count the 4 weeks of IV IFN I did, I will be at week 23 of 52.  Which is almost 50%.

Maybe I wait until January 15th, and then I will be very solidly  halfway through.

In other “halfway through” milestones, I’m in my 9th month of this.  And I have about 9 months left of the IFN.  So I am kinda halfway through *something* now.

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.

m

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.

Voting for Obama gave me a Panic Attack, so I played the Cancer Card

Voting for Obama gave me a panic attack, so I played the Cancer Card.

The line to vote stretched around one short block (underhill), and down a long block all the way to Vanderbilt.  Okay, I’ve voted in this school three or four times, and never have I had to wait for more than 5 people.  There must have been 500 people in line.

As I walk down the line, seeing the end get further away as I walk towards it, I see people I know and nod to them.  I’m thinking about how long this is going to take, and whether I can do it.  And I get to the end of the line, and my body explodes into a full blown pins and needles attack immediately.

I strip off all the clothes I can remove and remain decent.  I scratch.  I sit down and try to meditate.  And in the end, after about 5 minutes of huddling in a fetal position in a 500 person long voting line, I gave in and played the Cancer Card.

I walked back to the front of the line (huddling and shivering) and told the person at the door that I had cancer, etc. etc.  As I was walking up I saw JW and his fiancee, and they both were immediately concerned with “are you okay?” questions, so I’m guessing I looked like hell.  I looked bad enough that the guy at the door just said “stand behind that woman”

It still took another 10 minutes of waiting to use the voting machine.  I ended up sitting down on the ground, trying to meditate.  Still in full pins and needles mode.

Once I was done voting, I basically ran out of there.  Walked home as fast as I could.  Took off more clothes on the way.  Walking down the street without any shirt on.  I got some dirty looks from a lesbian couple with their kid.

It was probably the worst pins and needles attack I have had.

Chemo Cruising

I had a pins and needles attack at lunch in a restaurant yesterday.  I felt it coming on, and walked out of the door onto Flatbush, and pulled up my shirt to get some cool air.  This is what I do all the time.  But this time I got cruised.

This crusty, trenchcoat wearing, almost homeless looking, scruffy headphone listening dude stops dead in his tracks, stares at me, and makes a grin.  Now if it were some hot Chelsea Muscle Boy…  JK.

But seriously, I’m having a crazy pins and needles attack, and this dude is thinking “that is some hot exposed flesh.”  So I just turned away from him.  I did want to explain the whole thing…  He kind of kept looking for a while, then wandered off.

It was funny. I came back into the restaurant and asked O if she had seen it.  And she had.  She pointed out that he went and took a menu so he could pretend he was doing something other than cruising me.

Seeing things, part two

So I went to all my doctors this week.

I’ll post about my hypnotherapist in a bit, but I’ll just say that it is great.  It is really helping.  I’ll explain more in a followup post.

My Oncological Psychiatrist said that the “seeing things” was probably IFN related.  He upped my Lexapro and Klonopin to take the edge off of my anxiety and help with the pins and needles.

My Oncologist says that unless I am having “night tremors” the visual abberations are not anything to worry about.  He says that the lesions and ulcers and strange skin textures are all “to be expected.”  He said that the pins and needles are a new side effect, but that none of it surprises him.  And, he said that “unless you skin is falling off, I don’t see any reason to modify your treatment.” He was quite concerned about depression, though.  He asked a lot about that.  He said that it starts to hit four months in, and gets worse through months 7 and 8.  By the 9th month, it gets better: either you have adjusted, or you see the light at the end of the tunnel, or something.

My psychologist says I’m doing well

And my dermatologist said that all the skin stuff, and mouth lesions stuff, are not growths (e.g. cancer, or warts) but are something called Acral Erythema.  As far as I understood, Acral Erythema is a skin reaction to a lowering of blood supply at the furthest extremities.  One of the things that the IFN does is reduce blood flow to the capilaries, hence the problems around my hands, ankles, and my tongue.  He gave me some cortizone cream, which has not seemed to do anything yet.

Bike Ride x 2 laps

I made it two laps around the park today.  It was maybe 60 degrees out. By the time I was done w/ the ride it was in the low 50’s. Everyone was wearing their fall kit, with tights and long sleeve jerseys.

I decided to wear my tank-top summer jersey.  Which I unzipped halfway into the first lap.  I went slow, and managed to avoid the pins and needles of the last ride.  I got some pins and needles going up the hill for the first time, but by that point, the sun had tucked behind the trees, and I was getting some cooler air.

I even made it a second lap.  I’ll try for three tomorrow.

The key is wearing almost nothing, riding near dusk, stripping off layers as i go, and going slow.  I can do this.