Tag: pins and needles

I am an Artwork

In San Francisco I was ignored or harassed as homeless when I got the pins and needles and sat in half lotus or lied down in the street.

In Los Angeles, the sidewalk was so dirty and full of glass that I wouldn’t lie down, but I huddled shirtless on the curb and no one paid me any notice.

In New York, as soon as I feel the symptoms coming on I have been popping out of the studio to sit on the sidewalk.  The studio is in the prime Chelsea art district.  When I sit in half lotus in front of gallery row, people slow and look.  They are mostly wondering why a man in a t-shirt is sitting in a yoga pose in 30 degree weather.  But some of them stop dead in their tracks, and contemplate me… AS IF I WERE A WORK OF ART!  I swear someone almost reached for their camera.

Dysesthesia, or knowing the words

I went to the dermatologist, who called the flaking on my eyes Eczema.  He called the lesions on my genitals something else (I forget).  He gave me a cream for both.  And told me to take Zyrtec for my itching.

And he gave me a name for my pins and needles: Dysesthesia.  He said that he has seen it in IFN cases. And he also mentioned some drug that may be useful in treating it.  But then backed off, and said I should ask my Oncologist, because it was out of his purview.  I forgot the name of the drug.

It feels really good to have a name for this mysterious side effect.  And a wikipedia page.  That helps too.

EPIC Craigslist FAIL

So I posted that message to Craigslist, trying to find a home for the extra IFN in my injection pens.  I had he best of intentions, but boy was I not thinking.  Here are a couple of the 10 responses:

From Laurence:

Hi,  Your heart is in the right place,  but the infection risk of someone else using your partially used pens is HUGE!!!!!!  Please take the ad down ASAP before some less informed actually takes you up on your generous offer.  I would hate to flag you,  no medications to be listed as per craigslist rules, I will trust you to do the right thing.  I work in healthcare and an fully aware of the cost of this stuff.  Please don’t put someone else at risk.  Great idea,  but there has to be another way to help folks.  Lobbying in albany or DC or contact local politicians to force Govt to  further subsidize these meds would be a great start.  Best of luck to you.  Happy thanksgiving!

From Gerthvan

I don’t need the interferon, but I think you are terrific.  Have you asked your doctor if there is a patient that might could benefit?  All the best to you!  Happy Healing and Happy Thanksgiving.  You are a good soul.

From Gigzilla

Hello,
I admire your generosity, but if this stuff is in a syringe (self injection pen??)  it would not be wise for more than one person to use it. If I am mistaken please forgive me. I am sure you mean well.       G-47

From Anthony

Very, very nice and thoughtful.
Hope you get better and Happy Thanksgiving.
Anthony

So of course the Hep-C patients would be well versed in the nuances of sharing needles, sterility of needles, etc.  And me, the silly Melanoma patient is clueless.

I freaked out when I realized this.  I had a total pins and needles attack. So fucked up the thought that my attempt to help someone could make them worse.  Fuck, what a mind trip.

Back when I found out I would be injecting my dear friend KM was all excited to teach me how to hit a vein (no he’s not a nurse, no he doesn’t hit veins anymore) but was dissapointed when he found out that all I had to do was jab it in and press the plunger.  The things that IV drug users know that come in handy.

A new day, a new side effect

So every few days my side effects change. For a while it was aches and pains, then we seemed to get that under control. Then it was the pins and needles, which are still my number one most awful side effect (bad episodes each of the last three days). But I have it more under control. For a while I couldn’t eat because of the lesions on my tongue, and for two days I even had trouble talking it was so bad. Then it was the lesions on my hands, which are easing off (i put vinegar on them). And the “sore bottom” which I soak as often as i can.

The latest are my eyes. The skin around my eyes is simply falling off. Flaking off in painful chunks. I have cuts/lesions at the creases and folds below my eyes. And crazy white flaky skin. It hurts, and putting moisturizer on it seems to make it hurt more (temporarily) and not really solve the problem. But if any of this is a pattern to be repeated, the eyes will be better by next week, and it will be something new.

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.

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.

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.