39 weeks to go…

i just finished my 9th week of self injection.  18.75% done.  39 weeks go to.

if you count the 4 weeks of IV IFN, i’ve done 13 weeks, which is exactly 25% of the 52 weeks of treatment.  of course, that doesn’t count my time on drug holidays.  i started the IFN on June 16th (the day before I started this blog…) Which is 4+ months ago.

I have at least one month of drug holiday time in there.  it feels like i was on holiday for more than that, though.  i guess it was just one week in the IV IFN, two weeks in between IV and SubQ, and then two weeks when i got back from Banff and was super sick.  I guess the first week back on the IFN felt like a holiday b/c I was only on a 10 MIU dose.

i was diagnosed on feb twenty-something.  I got the first call on the 20th, but didn’t formally hear the words “you have cancer” until the 22nd.  so that makes it 8 months i’ve been dealing with this.

Forgetting that I am Forgetting

i’m kind of rough.  back up to full dose again, post immunosupression.  been experiencing a whole lot of side effects.  lots of physical discomfort.  (that’s a nice euphemism.)

O told me today that i have been forgetting things.  as in, she tells me things, or i do things, and then don’t realize that i have already been told this, and ask about it.  or don’t realize that i have already done something. (or more likely: not done something.) i mean, i knew before i was forgetting things.  but now, it seems that i am forgetting things and *not* realizing it.  this has been freaking me out today.

also, lots of pinprick sensations.  the heat rash + hot flash thing.  in the middle of public i just want to pull off all of my clothes and scratch frantically at my skin.  sometimes i pull off all of my outerlayers, and scratch at my skin under my undershirt.  only in new york, right?

actually i wish i was (sort of) in china.  i mean, it would be much hotter there, but in the summer the men in china all pull their shirts up over their bellies.  i think that is the most brilliant move.  all these old men with formal slacks, leather shoes, pulling their shirts up over their bellies.  their nipples stay covered!  but they get some cooling.

Apples and Peanut Butter

On Sep 24, 2008, at 2:12 PM, addwag wrote:

i was thinking about that analogy that monk gave you about billy’s bakery..

what if you love cupcakes and then you resist getting a cupcake and then after a while you no longer crave or need cupcakes- which is the goal?

then do you lose what you love because you resist it? and if so, what do you love instead?

i think that for him it is all about controlling and submlimatng desire.  and chanelling that energy into meditation (and all the god stuff.)

but for me, it is more important as an analogy of changing behaviors.  understanding how behaviors are created and reinforced.  positive and negative.

i *had* to do this (w/o really understanding the process) when i got off of caffeine 10 years ago.  i had to do this just this past month with learning to incorporate the neti pot into my twice-daily ablutions.  and i’ve definitely had to do this with meditation. but there is a point of inflection, where it gets easier and easier to do (and harder and harder to not do.)  that is the real point.

but when you leave something behind, you always have the memory.  sometimes its not the love for the thing itself, but your desire for something.  and sometimes desire is something good to get rid of.  covetousness desire.  greedy desire.

the IFN makes it so i don’t like chocolate.  i used to *love* chocolate.  and for now, that love is gone.  and at first it was terribly sad for me.  i felt like i was missing part of myself.  but love of chocolate isn’t me, its just something i had.  it was replaced with love of watermelon.  now that watermelon is no longer in season, i have love of apples and peanut butter.  things come and go.

I did the dishes

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.

This is not my beautiful house

I’m in my apartment in Brooklyn. I walked in and had total shock: this is where I live?  Really?  This is really where I live?

It seemed so much smaller than I remembered, and darker.  And nothing seemed like it was where it was supposed to be.  And the lobby wasn’t quite as clean as it was before.  And there was rust on the entry door.  And there was scummy shit in the bathtub that I couldn’t wash away (probably from the construction upstairs).  And the upstairs neighbor continues to throw trash out this window.

But my bed was still perfect

Same as it ever was.

Hello World: Melanarrative

I am a 30 year old Brooklynite who was diagnosed with Stage III Melanoma in February 2008. Today, I was meditating through my second session of chemotherapy, and came to the conclusion I should be blogging all of this experience.  I have been sending emails out to my close friends, but it all forms a coherent narrative.  A Melanarrative, so to speak.  It all came to me.  Meditating to Brian Eno’s Music For Airports.

There have been a lot of changes in the last four months.  A lot.  Like meditating.  I only started that two weeks ago.  At the insistence of of the Psychiatrist when he proscribed me Klonopin. He told me how aggressive he was about treating things with drugs, but three times told me I needed to learn how to meditate.

I have been writing emails to my friends and family from the beginning.  I will continue to do that, and post much of that here.  I will also return to those emails and post them here as necessary.

I am a creative person who does things kind of like this blog for a practice, but I feel strongly that this remain an anonymous endeavor.  Some of you reading this know who I am.  I put my trust in you to keep it anonymous.  Not because I am ashamed of what has happened to me.  But because I do not want that to become *who* I am.  It is something I have.  And experience I have had.  But not *who* I am.

I am writing this because it is a way for me to work out my thoughts and feelings.  And maybe someone else out there will find it useful, or interesting, or similar, or different from their experience.

I am writing this because I have already forgotten what it felt like the day before I found out my diagnosis.  I am writing this to preserve my own memory.