Category: daily update

the foodz, i has it

my personal chef delivered today. the food is so yummy. i’m actually eating dinner. i’ve been having so much trouble with that.

it has taken me 5 years to figure out new york. what make it hard. what makes it easier. who are your friends. how to deal with all the crazy people in power.

i think that this discovery of delivered home cooked food is one of the more recent revelations. it is actually much less expensive than take out or deli counter food, much healthier, and everything is to my tastes. so none of it is hurting my mouth. its pretty amazing.

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Dermatologist versus Oncologist

My Oncologist freaked out on me when he realized I was using Taclonex, a topical steroid.  I was given it by my dermatologist to treat what I know know was Reiter’s Syndrome.  I didn’t realize any of it was a problem.  My oncologist freaked out so much that I went into a full dysesthesia attack.  Fun.

So I stopped the Taclonex, even though it was working on the Reiter’s Syndrome.

Today, I told my dermatologist this story, and he pooh-pooh’ed the concerns of the oncologist, citing several studies that showed that topical steriods do not make it into the bloodstream.  And at the same time was a touch defensive, trying to reassure me that he would never have give me something if he was not 100% confident it was safe.

So it doesn’t make it through my skin into my bloodstream… but I had *skin cancer*.  Or am I falsely relating the surface with the site of the original cancer.  When the real risk are those rogue cells floating in my bloodstream?

So whose instructions do I follow?  How much pain can I take from my fingers?  How much of the pain is the infections (which I go a prescription for)?  With the infections under control, will I get some of my fine motor skills back? (I’ve been having trouble picking up pills, keys, gummi bears, and other small objects b/c the tips of my fingers are so sore and my finger nails are mostly gone.  Also, opening the magnetic clasp on my computer is a comic affair: I find some spoon, or USB cable, or the corner of my iPod Touch, slip it in, and lift it up two or three inches, and let gravity pull the bottom half away from the top half (it usually lands on the table with a thud)

So whose instructions do I follow?

Reiter’s Syndrome

I went to the dermatologist today.  Everything checked out fine.  All my moles are (still) normal.  All the new lesions are also normal, and have a name: Reiter’s Syndrome. And when it shows up the lesions are called psoriasis.  This includes the big lesions on my tongue. A quick google search reveals an academic paper linking Reiter’s Syndrome to IFN (that costs money, and arrives by mail?), and a Reagan era NYTimes article discussing AIDS and Reiter’s syndrome.  It is unclear to me how much of this science is still accurate (it was 1987, and they didn’t really know that much about HIV/AIDS) but they argue that HIV suppresses one part of the immune system and allows the other part (the Interferons) to flourish:

”AIDS patients have high levels of interferon and it is known that when we give interferon to patients with cancer they develop psoriasis,” Dr. Winchester said. ”It is possible that high levels of interferon may induce both psoriasis and Reiter’s syndrome.”

The presence of Interferon, whether as a result of HIV/AIDS or a result of Interferon treatment, results in a psoriasis and Reiter’s syndrome.

I don’t have HIV/AIDS, but I do have one of the most common side effects of the disease, because the two share the same mechanism – interferon.

Facemask as tactical device

I just flew to and from Los Angeles for a conference. As per my doctor’s orders I wore a facemask and used my neti pot upon landing. I didn’t get sick, which was wonderful.

In the process I discovered that my facemask was a great tactical device in the struggle for space on the airplane. The first flight was empty. I had a window seat, and there was someone sitting in the aisle. I put my mask on, looked out the window for a minute or so, and when I looked back, the guy sitting in the aisle seat was gone. Disappeared. Went and sat at some other aisle seat. So I got a whole row, and slept well. The thing that he didn’t get is that I wasn’t sick. I was not contagious. I wasn’t wearing the mask to protect him, I was wearing it to protect me. I was afraid of *his* germs!

A Letter to K

A letter to K, who was upset with me about my visit last November, but hadn’t said anything about it to me since.

jesus, k.

i’m sorry. i had no idea. i’m sorry.

i’m really caught off guard by this. stunned. totally reeling, from the content, from the tone. trying hard not try cry.

your friendship means so much to me, that it hurts both that i hurt you, and also that you didn’t tell me. these are small things that have built up into serious anger. I don’t even know what ‘startlogic’ is?

and also, i felt so grateful for your patience with me. which makes it all the more painful to realize you were angry at me for it. i was a lot more tired and sick than i thought i would be by the time i got to LA last November. each month provides new difficulties, and that was the month I spent rolling around on the ground, ripping my clothes off to try to cool off on the concrete. I got back, got a name for it (dysesthesia), and a drug for it, which then killed my libido entirely, and dulled the dysesthesia so that I can leave the house without being afraid of a seizure like episode.

i hate not being able to be completely independent. i hate the fact that my fingers have so many lesions on them that I can’t do my own dishes, and it hurts too much to put gloves on and take them off, that I have to save up dishes for a ‘gloving’. i hate that i have no appetite, which makes me crash, which makes me cry. i hate that i have lost my libido, and what that has meant for my relationship O, someone i really care about, who rationally understands it is chemical, but who feels rejected nonetheless. i hate that i have lost half of my hair. and i hate that i have to ask people for their seat on the subway or i won’t make it through the ride, and i more than anything i hate being told to fuck off by my fellow subway riders. my vision is going (i’m seeing double a lot, for a while i was hallucinating), my memory left a long time ago (vis-a-vis startlogic), i am starting to experience real chemical depression, (as per all the prognoses of the drug treatment.)

yesterday was the one year mark from my diagnosis. there is no question this has been the hardest year of my life. the cruel irony is that it is something i have to endure myself (it is a very lonely affair, and only people who have been *really* sick get it) and yet, am completely dependent on everyone around me, for things i can’t do, for thinks i would normally be able to do, for understanding.

i have an intern who has been working with me for two months. she is dedicated, works remotely half of the time, and is doing a great job translating the  book into Spanish. Today I realized I never told her about the cancer. It was a really awkward moment. I guess i thought that I was going to tell her, or that I already told her, or something. I don’t like to tell people immediately, both b/c of pride, trust, and a desire for them to realize that I am normal. or rather really trying hard to pretend like everything is normal. but when i told her, all of a sudden she realized why I kept coming in late, and somedays couldn’t even make it in at all. why I was getting my schedule all confused. And why i have so many drugs on my studio desk.

i’m trying so hard to act like i am normal, but i’m not. i’m on a “highly toxic” treatment. it is so hard to look normal from the outside, and be falling apart on the inside and the edges. and i’m not just talking about the way the drugs fuck with my emotions, and the ensuing chemical depression, but having my body fall apart from the inside. i have so many holes in my tongue i can’t eat anything without pain. i have a permanent gash in the back of my mouth near my jaw. when i eat, i leave bloodstains on my napkin at the edges of my mouth. half of the time i can’t wear in-ear earphones because the lesions in my ears keep getting re-infected. My eyes flake off scales of skin.

but i’m trying so hard to act like i am normal. maybe too hard

i’m really scared about this coming trip. maybe that is why i am reacting so emotionally to this. after the last travel, i cancelled all travel excepting this trip to CAA. i’ve turned down speaking gigs in berlin, croatia, argentina, los angeles, university of iowa, etc. b/c traveling is so hard. traveling is hard just getting to and from my studio and my apartment.

i had lunch with an artist friend last week. i knew he had been sick a few years back, but i didn’t know what. something thyroid related. turns out he had thyroid cancer. while they were removing the thyroid they found it had spread to all the lymph nodes in his neck — out those came. it was so comforting to meet someone who had been dealing with all of these things. I have found people here and there who had been diagnosed, but usually at such an early stage that it was just one minor surgery. It was nice to talk to someone who had something more advanced, like myself, but who is living his life.  His condition requires a little bit more maintenance than mine will be at three years out, as I did not have any organs removed, but he gets it.

He was *really inspirational* for me to try to chill out, he has basically stopped traveling, or speaking publicly, keeps his studio in his apartment, and doesn’t go out for social events. And despite all of that, his career is soaring.  he helped me think about trying to not pretend like i am normal. to sleep in all day because that is what my body needs. to say no to things. more often. and to rest. because it is my life on the line.

I’m sorry if this is a lot. A big response. i don’t want you angry at me. i don’t want you to hold a grudge against me for something i either don’t remember, or couldn’t control.

i want to stay with you because i want to spend time with you. i want you to meet O. i could stay at my aunts, or cousins, or CHP has even offered her couch. but i don’t get to see you very often, and these days, with travel so much harder for me, i see you even less.

if there is anything specific i can do to avoid impinging on you more than a normal visit would, please let me know. can i order groceries from a Fresh Direct style delivery service? I’ll take you out for dinner every night. i’ll rent a car, if you think that would help. i will bring lots of cliff bars.

http://www.pinkdot.com/
http://www.paradiseo.com/

???

I love you dearly K, and I don’t want you upset with me,

m

Today is my Cancerversary

KICKING CANCER'S ASS, 2008-2009

Happy Cancerversary

I was diagnosed with Melanoma one year ago. O took me out for a fancy dinner, complete with a marzipan scroll that says “Happy Cancerversary” on it. And she gave me this awesome trophy. The trophy has a special story. It was one of the props from when Lance Armstrong was on Saturday Night Live. I don’t thing it was actively used — maybe it was an alternate, or just in the background, but it was made custom for Lance. So say what you will about the fact that he was better at covering up his doping than all the other riders who did the same thing, but got caught: the man kicked cancer’s ass. So the base is enscribed “KICKING CANCER’S ASS, 2008-2009.”

It is crazy to think how different life was a year ago. How much I’ve grown. How much violence my body has endured. How drug addled I am. And how much I feel like a different person.

Tongue Nasty (NSFW?)

tongue nasty (NSFW?)

This is dead skin on my tongue. The pink part in the middle is where i scraped off some of it, exposing the flesh below. It is pretty revolting. The most bizarre part is that most of the patches have a ‘breathing hole’ — a hole in the middle that extends through to the new skin below. I hope my molting finishes soon.

I scraped at it a bit, and pulled off a bunch of clearly dead skin. But the next day it was back (and hurt more.)

Things falling apart

Broken iPod Touch

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.)

Expired Miles

Expired Miles

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