Tag: denial

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.

Diagnosis: Invasive Malignant Melanoma

I am writing this to help me remember what has happened to me. One of the most amazing things about trauma is its ability to erase memory.  I’m sure it is a Darwinian survival mechanism.  If you dwell too much on terrible things that have been done to you, you will never be whole again.

But these four months have changed so much about me that if I do not reckon with what has happened to me I might not understand whom I have become

—

On February 22nd, 2008 I received my diagnosis of Invasive Malignant Melanoma, the bad kind of skin cancer.

It was snowing out.

I left my dermatologist and trudged through the greying snow berms of TriBeCa to the offices of a fancy non-for-profit art organization for a meeting about their website.  They have a big website that had a lot of problems, and they wanted my web design collaborator and I to redo it.  Or at least tell them how we would, and how much it would cost.

Straight out of the drs appt I walked into this business meeting for the largest site I had ever bid on, and totally rocked the meeting.  I was totally on point.  I answered every question the right way.  I dropped all the right references.  Made them totally reassured about the right things.  And they had no qualms when we told them it was going to cost $100-125K for their site redesign.

Two weeks later we found out the director wanted us to do it, but their board wanted to go w/ some other more mainstream “firm.”  While it was dissapointing, it was a blessing in disguise.  Because I had Melanoma.

So despite my diagnosis, I held it together.  I rode the train back uptown with my collaborator, got off at the same stop, but turned in different directions, as he went back to his appartment, and I went to the studio.

I held it together until I arrived at the studio.  then i fell apart.

I walked in, stunned, and SL immediately asked me what happened.  “Was Dallas that bad?” referring to a conference I had been at the previous three days.  And I told him.  He was the first person I told.  I think I said “I don’t even know how to say this… I was just told I have Melanoma.”  He made some perfect jokes about cancer that I forget – he has a great way of using humor as a healing mechanism.  And told me that his wife’s mother was diagnosed with Melanoma twenty years ago, and is still alive and well.

I sat down and wrote this email to my parents, my brother S, my roommate P, my good friend X and the woman I was seeing K:

i’ve been having a rly shitty 36hrs.

my flight was cancelled out of dallas.  i had to sprint through the airport in houston.  this time i made the flight, and when i sat down in my seat, the phone rang.  it was my dermatologist’s assistant asking me to come in as soon as possible to speak w/ the derm about the lab results from the supposed blood blister he removed on my right calf.  i asked him to specify, but he said that the dr wanted to speak to me in person.

so i spent much of the flight having horrific visions of me as a chemo patient.  at the same time knowing that was really fatalistic for skin cancer.  but also knowing that i am not stupid, and that the results were most likely skin cancer.

and then when i got off the plane, i got a msg from my lawyer saying that the condo plan was going to be approved in the next day or so.  He had been trading phone calls with the atty gnrl to slow it down two or three days so as to make it go past march 1st, but that was not going to be possible.  to remind, march 1st is the day after which i am on a new lease in the apt w/o J on it.  this is significant, b/c it reduces her claim to a right to purchase the apt.

great, right?  double whammy.  spent the evening in a daze.  not sure whether to email about everything, or not.  whether to talk about the fear of cancer, or not…

yeah, so went into the dr today. yeah, so it was a malignant melanoma.  “i have cancer.”  weird, right?

it was “Clarks Level 3” of 5.  The depth was 1.88mm. Less than 1mm lymph node biopsy is not needed.  More than 3mm, and you go straight to chemo.  There was no ulceration, which means that it didn’t break the upper reaches of the skin, or something like that, which it has to do to spread to the lymph nodes.  So, it could be worse, could be better.

i have apt on monday w/ melanoma specialist who will excise a moderate sized chunk of my right calf, and send me to a different specialist who will biopsy my lymph nodes. if the sentinel nodes (back of knee, groin) are clear, then i watch carefully for two years and am a new man.  if they are not clear, then there is “other stuff.”

at one point i asked him whether i was going to die.  it is weird to ask that question.  he said that people do die from this, but that it was unlikely in my case, and that regardless it was too soon to speak about percentages and outcomes. i have to wait for results from lymph node biopsy.

so here i am at the studio.

i just arrived.

im ready to go home.

i haven’t cried yet, but it will happen.  still a little shell shocked.

m