Category: metanarrative

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.

New Melanoma Drug

This is for patients in a *much* more advanced stage than myself. But is good news in general. From the BBC:

PLX4032 works by seeking out and destroying tumour cells carrying the BRAF mutation implicated in 60% malignant melanomas.

This could not only help to shrink the skin cancer, but also delay its spread.

Currently, only a small proportion of people – less than 5% – live more than two years if their cancer has spread around the body.

Early findings

In a phase I study involving 16 patients with BRAF-positive melanoma, over half saw the extent of their cancer reduce by at least 30%.

Patients treated with PLX4032 lived for a median of six months without their disease getting worse and more than half experienced significant shrinkage of their tumours.

This included patients where the cancer had spread to the liver, lung and bone.

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.

50,000 words – should I make this public?

I’ve been writing on this blog for 8 months (exactly). It has been a bit more than a year since I was diagnosed. I have written 173 posts, with a total word count of more than 50,000, and nearly 100 images.

I am wondering if I should make this public. Or at least more public. Not that I am going to blast announcement emails all over the place, but maybe just a link in my bio, or a link off of my homepage. The bizarre thing is that is very much in line with my artwork. Life art on the Internet. I don’t want to make an art project out of my cancer, but I do think that I am putting some of the same creative energy into it, sometimes. Othertimes, I am just bitching, or showing off the holes in my mouth.

Please chime in on the comments.  I’m going back and forth on this.

a friend’s bad news

I wrote this at the end of August, but didn’t feel it was appropriate to post it then.  Then I forgot about it in my draft folder.  The good news is that everything checked out fine, and there was no Cancer.  (I spoil the ending, I know…)

B came up to me today and asked to talk.  she seemed really distressed.  strangely the kind of distressed i usually associate with someone about to tell me that they are really mad at me.  i was really confused.  we went over to where the chairs are at eyebeam, and sat down.  i asked her if she was okay, and she said “no” with real conviction.  she paused, and said that  she went to the doctor for a mamogram, and then she paused.  stunned.  i just reached out and held her hand.

they found calcifications (nodes) in her breast.  apparently they are concerned about them.  that some patterns are worse than others.  I don’t know much about the histology and prognoses of breast cancer.  i only know about melanoma, and each are so different.  but what i do know is what it feels like to be told you need to have a biopsy.  i told her the things i wished i had known at that moment.  and i did it with a calm and collectedness that surprised me.

i told her that until they confirm that it is malignant, she needs to remain calm, and not go down that road mentally.  i told her that percentages and odds of outcomes are irrelevant: i was supposed to be in the 85%, but I ended up in the 15% (with metastisis).  i told her that she could come and cry at any time and i would hold her.  and i told her that she shouldn’t keep it bottled up: i waited way too long to tell people, pretending that it was not a big deal.  but the fact is, it is a big deal from day one of discovery.  emotionally, and physically.  i told her to figure out what she can ask for help with, and ask for it: from her parents, from her friends.  and i told her what SL told me the first day: she needed to learn how to meditate.

and i told her the story of when i was 17 and they found big nodes in my lungs on a routine physical.  they had to do a biopsy.  i thought i was going to have cancer and die.  but it turned out that it was just scar tissue from a childhood pneumonia or something.

until you get confirmation that something bad is going on, you have to be optimistic and remain mentally strong.  so much of it is a mental struggle.

I didn’t write it at the time, but the other thing I was how I was becoming The Cancer Expert, and people were coming to me to talk about their histories, and their current scares.

Half Way Point

I reached the half way point in my self-injections. 24 weeks done, 24 weeks to go. 72 injections.

I decided I want to go get the most expensive box of 24 chocolates I can find, and eat one every week for the next 24 weeks. Then (ever the pragmatist) I decided they might get stale, so I will get them in two rounds of 12. What is the most indulgent? Jacques Torres?

It has actually taken me nearly 10 days to get adjusted to the idea that I halfway, and that I have more of this behind me, than in front of me. It was really hard to feel that intuitively for a while. Now I feel it, and it feels good.

Of course, though, the last month, and the next two months are supposed to be the hardest ones. I can attest to how hard the last 10 days have been.