Month: March 2009

A lesson I am trying so hard to learn

Addwag writes via email:

PS i just read your blog-

why in gods name are you emailing me about my stupid questions when you feel terrible? although I appreciate it, please next time, it can wait, I promise..  send me an email that says something like (I will write it so you can just paste the reply in)

“I feel like shit today and I shouldn’t be on my computer so ping me another day when I don’t feel like I am dying of a rare disease you get from monkeys in the congo”

sorry- but us overachievers have got to learn to force ourselves to stop working sometimes.. xoo

if there is anything I can do for 2,000 miles away let me know, promise?

It is all a front

On Mar 15, 2009, at 12:27 PM, PD wrote:

i think b/c your studio work seems productive i assumed that you were feeling better. but i know you well enough to know that i might have been off on that assumption.

Yeah, duh! Of course it is all a front. It is all a way of me thinking that I am okay. Studio production is up, therefore I must be okay. Both telling the outside world, and telling myself. If I keep acting like I am fine I will be fine. (Lie.)

But these last two months have been really hard. And i’ve worn myself down.

And I’m pretty much going to spend the day in bed today. sick to my stomach. exhausted. my skin is falling apart.

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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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.