I’m going to get a personal chef (LOL)

I’m going to get a personal chef.  Or rather, I’m going to have someone cook me some food once a week.

Getting cancer young sucks for many reasons, but one of which is that all your friends are too busy to make their own food, let alone do the typical food brigade.  But later in life, when most people get cancer, people are retired, or at least their children are grown.  I know that my mother has been involved in several food support networks:  someone brings over soup and a casserole once a week or something.

Well, here in NYC, alienating move-it-or-lose-it NYC, you can’t find friends with the time, energy or skill to make you food and deliver it (and I don’t blame them!!!).

BUT you can find someone who you can pay to do it for you.  In NYC you can get just about everything delivered… for a price.  From you groceries, to custom shopped clothing, to Cocaine: someone will deliver it.

So I emailed with someone whose card was up on the board at my favorite coffee shop.  Hopefully this works. out.

Lets try it, even if you only can cover through the end of March.  Even those three weeks will be a relief for me.  And if it works, maybe you can set me up with someone when you leave.

Why don’t you propose some specific dishes (a grain or pasta salad, a casserole/baked dish that I can reheat, and a soup.)

I have lesions in my mouth and on my tongue.  (fun, right?)   I have noticed that acids hurt my mouth really badly, and that things like bread crust also hurt a lot, so no tomatos, citrus, or nuts.  Cheese, Cottage Cheese, pasta, Oatmeal, soft breads are all good.  I’ve been told that beets are great for chemo, but I haven’t made any lately.  I should go try some, but I’m banned from all Buffet/Salad bars (e.g. Whole Foods) b/c I’m immunosuppressed.

I can’t quite quantify what $50/hr means in terms of volume of food.  Can you propose some specific dishes, and estimate how long the whole thing would take, what ingredients would costs, and assuming it is within my budget, we’ll go forward.

I would be happy to start this as soon as you can

Thanks,

m

On Mar 9, 2009, at 10:34 PM, DBN wrote:

Hi,

Thank you for getting in touch with me. I would be interested in working with you, but want to let you know that I will be moving out of Brooklyn at the end of March. Although this would be a short term arrangement, I am happy to cook for you, and could arrange for someone to take over when I leave.

I generally charge $50/hr for my services, and charge for ingredients separately, however this is negotiable.  I can propose specific dishes, or since you gave me guidelines of what you are looking for, I could go ahead and prepare things that would be more gentle on your system, and you would not need to select the menu.

I hope that your treatments are not too difficult on your body, and that you are headed for a speedy recovery.

Please let me know if you’d like to work together.

Best,
DBN

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.

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.

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.