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.

13 Candles

O made me a "last lap" prize. I have 13 weeks left, which is 1/4 of the total time. Its like running a mile, and coming into your last lap. I can see the finish. I can feel the finish. This all will be over soon. Three months doesn’t seem like a short time, but considering I’ve been doing this for 14 months, it is pretty doable.

last lap

last lap

Last Lap

Today I finished week 39, which leaves 13 weeks to go. I am 75% done. I am starting the last lap. 3/4 seems like a lot, and yet so far at the same time. But I think this part will move fast.

My oncologist has warned me of several things:

1. it was going to get harder through months 6-9, and then stay about the same, or maybe *feel* a little bit better for the last three months. It is unclear whether this is the body adapting on a physical basis, or a psychological basis, but it feels like it will be true.

2. he warned me that my anxiety would continue to increase as I approached the end of the treatment. That part would crescendo, only to disappear completely within two or three days of the last injection. I can say for sure that my anxiety is ramping up. So much that I am starting to notice the anxiety transform into paranoia. O has noticed it too. Little things, like misreading emails, or worrying too much about a botched communication as symbolic of some other relational disconnect. Plus I am still kind of irritable from the IFN and the Atarax (that I am taking every few days as needed), so I don’t have that much patience.

anyway, 13 weeks left. Three months. The bulk of the last month of which I will be in Portland. So two+ months. The weeks just go by.

Can’t Sleep

I’m in this really weird cycle where I alternate insomnia with narcolepsy. One night I’m out like a light, and sleep the whole night through, and am up before my alarm. Those mornings I am relatively full of energy.. Another night I toss and turn for hours before falling asleep, and then waking up late; sometimes i sleep in the whole day.

The strangest part is that doesn’t seem to correlate to my injection schedule. Last night I injected, but slept great and had good energy this morning. The Wednesday previous I spent the entire day in bed after a terrible night sleep.

To make it more complicated, my Dr took me of Ambien, as I was doing weird things in my sleep. The Ambien stuff. Pretty well documented at this point. So I’m scared to take it, in fear of what I will say in my sleep, do in my sleep, or not wake up when my sleep-talking wakes up O.

Two nights ago I gave up: I went on a full apartment search for Ambien. As I have not been taking it for several months O has expropriated my supply (as I suggested). But when I went looking for it, it wasn’t in any of the medicine cabinets, toiletry travel bags, or anything. I didn’t want to wake her up. I ended up taking more Klonopin and some Atarax and tossing and turning myself to sleep downstairs.

Sometime in the middle of the night, O came down to make sure I was okay. I was so disoriented, I couldn’t form complete sentences, and for an irrational/chemical reason was on the verge of tears. I tried to explain, but I only got out half sentences. And repeated those half sentences several times. Then stumbled off to the bathroom (nearly falling) and coming back and crashing out again. I worried that I freaked O out, but knew that she had seen this before from me. We talked about it in the morning, and I think I explained myself, in so much as my irrationality could be explained.

She showed me where she keeps her Ambien. On the bedstand, in a decorative metal jewelbox like container. It is both Vienna Seccessionist and Flower Power at the same time. And it is full of Ambien. I just took one. Well, half of one. Right before I started writing this.

I think I will go meditate for a few minutes, and try again