I’m anxious about my last week on anxiety drugs

I was reading a New York Times article on depression, psychology and psychopharmacology, and I realized I had not taken my Klonopin… My headaches should have made it obvious, but I’m in a new routine this week. Today i the first day of the last week of my titration off of Klonopin.

I just took the quarter of a pill.

For most of my treatment, I was taking 3mgs per day. When I began this titration I was taking one 1mg pill twice a day. For the 8 weeks I dropped .25mg every week. I alternated the reduction from mornings and evenings. This week I am stopping taking the pill in the mornings. Just .25mg in the evenings. Next week I stop altogether. It will be the last major measurable hurdle in my post-treatment recovery. Of course, I will still not be 100% eight days from now, as my body is still healing and readjusting, though this healing is not as obvious or nearly as measurable.

Actually, if today’s headaches are any indicator, eight days from now I will probably be hurting pretty bad for a few days. Headaches all day. I ate and drank plenty of water today. I think it is just the drugs.

The last two months have been pretty hard body-chemistry-wise. Coming down off of the Lexapro (antidepressant) was rather easy. The first few days I felt distinct noticeable symptoms, but after that it was just 4 weeks of careful pill-chopping. The Klonopin has been entirely different: anxiety about having anxiety (LOL), feeling like I was feeling bad from the titration but not feeling bad enough to know for sure, and the exhausting discipline of sustaining the 2 month decrescendo. Nothing certain, nothing concrete, but definitely something was happening.

I am really really really looking forward to being done with the drugs. After 2+ years of this, though, I am somewhat anxious about being with out my anxiety meds. It is kind of ironic, and kind of funny, and really altogether predictable, but yet very real.

Over the last two months, my anxiety has ratcheted up a notch or two, as my dosage reduced. It seems only natural. I hope that it will diffuse once my body has completed the withdrawal process, but I worry that it will not do so fully. Or something like that.

From my Mom

Mom read the last post and sent this:

just wanted you to know
yeah, I read the blog
and yeah, I’ll always be your mom

you just ran a triatholon
a full one
with no training

you are going to be ok
yes, you need to re adjust your expectations of normal

the new normal, remember


and yes, you are jet lagged as well
and yes, you are coming off big time drugs

remember  Jr year in college?

I love you

Just for background, Junior year in college I was addicted to caffeine and worked myself to exhaustion, and spent a week in the hospital. It was pretty bad. I had to go home for a month to recover after I was let out of the hospital. I couldn’t even fly for a week or so after I got out, I was so wrecked. Anyway… I guess that is perfect segue.

Last night I had a pretty solid freak out about feeling overwhelmed. I was watching Stephen Colber w/ O and I got a jarring phone call about logistics from one of my assistants. The news wasn’t really that bad, it just foregrounded the extent to which I was kind of all over the place.  And then I panicked and really freaked out. I started thinking about all the things I need to do. All the places I’m supposed to be. And like Jennings’ post, I felt like everything was moving past me so fast, and I could not hold on to anything.

O and I talked about it a bit. I explained all the things I was supposed to be doing the next day.  And she told me that I shouldn’t. And I protested. Even though I knew she was right. I just couldn’t see how I could just say no.  Or not do things. In this case, it was a conflict between my weekly pyschologist appointment, and a five hour long meeting at the studio that I found out about two days earlier. I rearranged my whole schedule around it, but then realized I created a conflict w/ my psychologist. I tried to call and cancel yesterday day, but got a busy signal both times. I should have known it was a sign that I shouldn’t cancel…

O wrote an email for me, backing out of the meeting at the studio. It was almost impossible for me to send the email. O had to write and send it. I am so afraid of backing out of responsibilities. No one wrote me back to reprimand me. No one wrote me back at all. Maybe they expressed their anger at me privately. Or maybe they weren’t angry at all. Maybe I am just afraid of their anger… I came for the last hour of the meeting. Everything had gone fine without me. I contributed some in the last hour. My presence was helpful, but not essential. My absence did not derail the whole process. It was kind of amazing to me. And I don’t mean that in some self-centered way. I mean that I just feel so obligated to do what is asked of me, that I find it almost impossible to say no.

So it was a good lesson, I suppose.

I am trying really hard to learn from it.

I have said no twice today. I sent them to other people for help. It was good. And each case, the person wrote me back to say that it had worked out.

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.

Back from the road

36 weeks done. I have 16 weeks left. 70% done. My mom is coming tmrw, which will distract me for a week. I’ll be down to 15, the last 3 or 4 of which will be in Portland. In my rationalization and fantasy, that makes it only 12 weeks left of solo, non-distracted injection. Of course this is a fantasy: I’m still months away, but it feels closer. I think that after week 39 (75%) I will feel a solid “last lap” feeling.

I was on the road for the last week, giving lectures with my studio mates. I did a lot better than the last time I attempted this in November. That said, this will be the last time I fly before I go home to Portland in July to finish my treatment. I did really well, but it was hard enough.

Some things have changed over the last few weeks that I have neglected to report. Most importantly, I’ve gone off the Atarax, which was controlling my dysesthesia, but also making me stoned, irritable, and sans-libido. I was in at my dermatologists, and he said “well, if you really think it is the Atarax, why not stop for a few days; you should feel the effects immediately — its not something that builds up in your blood stream. If the dysesthesia is too strong, you go back on it.”

Amazingly, I was fine. The three months on the Atarax had got me adjusted to knowing when and where i was most likely to experience an attack, and to avoid those situations, and controlling the reaction through meditation when it was unavoidable. So I have had to concentrate harder at times, but I have been rewarded with a better mood, a lot more energy, and a libido that is still suppressed (from the IFN) but a lot stronger than before.

I had several doctors appointments about 4 weeks ago. My CT scans are clean. My Oncologist continues to tell me I am doing better than most any of his patients. It is small relief, considering this experience feels so bad, but I wonder about those patients who are doing ‘worse’ than most of his patients.

The day I was in I had to wait 4.5 hours to see the doctor. I’ve gotten really good at being patient in doctors offices. I was told the doctor was running late when I signed in, and after about 45 minutes I checked in to see whether we were talking a few more minutes, or a few more hours. Mostly I wanted to know whether to pull out the laptop and start working. I was told that it was most definitely a laptop day.

The way the nurse phrased it was “There are some very sick patients here today.” She said it under her breath, so as to not let it spread too far beyond our little micro-conversation-sphere. I found out that one patient had to be admitted before I arrived at 10am, and several other patients were admitted during the 4.5 hours I was waiting. Apparently the doctor was away at a conference, and these older patients didn’t go to the ER when they should have, as their skin grafts became infected, or they got really sick with a pneumonia, or what have you.

Knowing that there are patients in the office who are likely dying gave me an incredible patience with waiting. I could have sat there for the whole day, patient and content, meditating on the wellbeing of those admitted patients, and grateful that I am strong enough to wait with patience.

One of the interesting things the doctor told me is that along with the reduction in physical changes that comes with month 10 (i’m still in the physical changes zone, but last month was much worse) comes an increase in anxiety and psychological effects. So months 6-9 are the hardest physically (all kinds of body falling apart.) But months 10-12 feature an crescendo of anxiety that doesn’t get better until after the last injection, and then, two or three days later, it disappears. Invariably, the anxiety vanishes within a week of the last injection.

I doubt that all the physical symptoms will go away quite so fast (my fingernails continue to disintegrate, i have Reiter’s lesions all over my legs) but it is nice to know that a good part of the mental stuff will go away fairly quickly.

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

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.

The Placebo Effect

Apparently doctors regularly proscribe drugs for their placebo effect.  The nytimes has an article detailing the practice.

I myself wholeheartedly believe in the effect.  When I was put on a .75 mg dose of Klonopin, it calmed me down immediately.  It actually calmed me down even before I got my prescription filled.  Later, as I was recounding the medications I was on to a nurse, she said “that’s not doing anything!  that’s not enough to be effective.”  and i said “Shush!  The placebo effect is working just fine.”