My personal chef delivered again, and now she is off to India. Which is fine b/c my brother comes for a week tmrw, then i’m away for a week, then my mom comes for a week. When they leave my freezer will be full, for sure.
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.)
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
In late December, inspired by Adrian Piper, I made a card to help communicate to people what was going on with me. Actually, I made two, but I have only printed one. One says “I HAVE CANCER / DO YOU MIND / GIVING UP YOUR SEAT / THANK YOU.” That one is for the difficulty of trying to get a seat on a crowded train – because I *look* fine on first impression. Closer inspection indicates otherwise…
The other one says “I HAVE CANCER / THESE ARE SIDE EFFECTS OF THE DRUGS / THIS IS NOT AN ATTEMPT TO START CONVERSATION / TALKING ABOUT THE SYMPTOMS MAKES THEM WORSE.” This is for when I am having a dysesthesia attack, and am scratching and writhing about. People stare at me, which makes it worse. Or they get up and move to the other side of the bus or train. This will maybe make them realize I am not dangerous, crazy, contagious, and/or a terrorist (LOL).
For the most part, I try to ride the subway on off peak hours. I’ve had to take the subway in for a few 9AM appointments and meetings, and things get crazy.
What is interesting, is that so far the “give up your seat” card has not worked at all. If anything it has been a hinderance. I think people think I am trying to collect alms from my poetry or something. People don’t even look at me, or they just stare.
The only good thing is that it alleviates the famous Stanley Milgram effect where the person asking experiences huge anxiety.
So far one younger Latino man got up for me. One white man didn’t but when the woman next to him got up he got up too and they both stood. Since then I have had three white men shake their heads at me. I thought I would as men because they are tougher or something. But they seem to largely be unsympathetic assholes. Which is the reputation of the NYC male.
When they say no I repeat to them my situation. It just goes right through them. Today I looked this williamsburg dude in the face after he said no twice and called him heartless and selfish. Maybe I need a different card to give out. One for people who say no. That lists all of my symptoms. How long my treatment goes on for. My prognosis. Etc. About how I may look sound but I’m not. I am a grandma inside. Weak, tired, carrying more drugs, ice packs, and healthcare paraphanalia in my bag than clothes or books.
This city is heartless.
6 weeks later, I have given up on the card. It is a nice little bit of poetry, but people think I am trying to beg for money. I have developed a new strategy. It is two part: 1. avoid taking the train when there isn’t going to be a seat on it. 2. quickly identify the youngest person who is not asleep, and who is not listening to their iPod and ask them. The other thing I have started to do is to say “I am sick” first. Then “I have cancer, it is hard for me to stand for long periods, can I please have your seat.”
This has had a pretty high success rate. Often people seem resentful, but they do it. I said it all to one dude, and he gruffly responded “whaddayawantmetodoaboutit?” And this glammed out black chick standing up next to him with crazy hair wearing a remarkable fur coat and heels immediately said “he needs to sit. get up and let him sit.” and he did it. resentfully.
The hardest part, actually, is getting on trains that are so cramped during rush hour that I can’t even make my way to find someone who I could ask to get up. I barely make it through those rides. But I make it, and I’m proud of that.
And then there was the time that I had just negotiated for a seat. It was right next to the door. And this woman got on and stood in front of me. My face was right at her belly level, and I noticed she was just starting to show a pregnancy. After maybe 15 seconds she said “can i have your seat, or i’m going to be sick.” I looked at her, confused, regrouped, stood up, and said “you may have my seat, but you should know that I am probably the only person on this train who is more sick than you.” I went and stood in the corner. That sounds really passive aggressive, but that wasn’t how it came out. It was more of an exasperation with entitlement, and the Milgram effect — even though I had sought out and negotiated for that seat, I was still willing to give it up immediately when asked.
In San Francisco I was ignored or harassed as homeless when I got the pins and needles and sat in half lotus or lied down in the street.
In Los Angeles, the sidewalk was so dirty and full of glass that I wouldn’t lie down, but I huddled shirtless on the curb and no one paid me any notice.
In New York, as soon as I feel the symptoms coming on I have been popping out of the studio to sit on the sidewalk. The studio is in the prime Chelsea art district. When I sit in half lotus in front of gallery row, people slow and look. They are mostly wondering why a man in a t-shirt is sitting in a yoga pose in 30 degree weather. But some of them stop dead in their tracks, and contemplate me… AS IF I WERE A WORK OF ART! I swear someone almost reached for their camera.
We will see if it gets taken down. I think it violates the Terms of Service.
Interferon – Intron A
I am 14 weeks into a 48 week Interferon (Intron A) regimen for Stage III Melanoma Cancer. I get a monthly supply of IFN in 4 self injection needle pens. My dosage is 20 MIU, there are approximately 75 MIU per pen, which leaves approximately 13-15 MIU in each pen after I am done with it.
This stuff costs a bloody fortune, but my insurance covers it. Each of those pens w/ the 13-15 MIU is probably “worth” $500. And I have 14 of them right now, and a new one every week. So that’s $7500 of IFN.
Obviously, it is not enough for a full course for a Melanoma patient (10 MIU/m^2), but would work fine for a hepatitis c patient, or a MS patient (3 MIU/m^2). Though to be honest, I’m not sure what the differences are in the brands/variants of Interferon Alpha.
I am hoping to find an IFN requiring patient who does not have the good fortune of having health insurance. I don’t want payment. I just want these insanely expensive drugs to help save someone’s life.
My landlord is trying to fix the leak that is coming from my bathroom. While I was gone today, his contractor decided that it was necessary to rip out the shower as well as the sink.
I took a bath tonight. A pretty strange bath. But the first bath I’ve taken since the first surgery in February. It took forever for the Dr. to deem my scars healed enough to be in a hot bath. And then it was just too darn hot to *want* to take a bath. And then I was afraid that the heat from the bath would trigger pins and needles.
Well, the bath wasn’t super hot, but I did stay in for a while, and no pins and needles. Which is good. I feel relaxed.
O is sick. She writes:
I’m not really hungry but i haven’t eaten and want the comfort of
comfort food (sound familiar?) so i’m going to call the diner for
delivery and then just stare at it when it arrives.
it’s a mystery to me what this is. my sore throat is super mild, it’s
just headache, body aches, and total fatigue. i think i might also
have a low-grade fever. i’d say that i really hope you don’t catch
this, except that i know these symptoms already define your every
sad but true. and well put
I did the dishes this morning. This is no small thing. I haven’t really done them for 7 months… P and S and mom did them. But S is in San Diego. And my apartment is quiet and empty. And the 48 hours of dishes were slowly building up. And I took 10 minutes before I left today, and did them.
I started a mediatation class this monday. Its Yogic. Which is a little weird for me, b/c it involves God talk. I just think of it all as a metaphor. But there were some really good things that the really cute young monk talked about. One of them was the idea that you are always either reinforcing or correcting behavior. Every decisions reinforces that behaviour.
The monk used the example of cupcakes from Billy’s Bakery. He obviously loves them. If you walk by and smell the wonders of the cupcakes, and have one, the next time, you will want one. You will be habituated to them. If you go in then, you will almost expect to do this again and again. You get the ball rolling, and it rolls on its own inertia.
Conversely, it is hard to bring yourself to meditate at first. It seems painful, and hard. But the second time it is easier. And the third even easier, and before you know it, it is just part of the routine. You get the ball rollling and it rolls on its own inertia. Or at least that is the idea.
So washing the dishes is a big first step in getting the ball rolling. Tomorrow it will be easier to do the dishes, and by next week, it will be no big deal. Returning to the New Normal is hard.