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.
