Tag: brooklyn

Sleepy Undertow

I went up to the hospital today.  I had an ultrasound to verify the presence of my veins and blood flow in them.  My Dr did this experimental procedure that I’m not really supposed to talk about.  And this was part of his documentation process.

And I also saw my Psychiatrist, who it turns out has been following the blog.  It was pretty amazing to talk about something, and have him reference something else I had written down in here.  To complete the self referentiality, we might talk this shout out when I see him in two weeks.

I went in to the studio for a bit, then came home and totally crashed.  I got up at 7:30 to make it to my 10am ultrasound.  By the time I returned home at 5pm I was totally spent.  I had a couple of errands to run, and I was getting ready to leave to take care of them when I realized I had a migrane level headache, and was slurring my words.  leaving my to do list and packed bag of things to drop off or mail off, I kind of collapsed onto my bed.

I have taken to napping since I was diagnosed.  I have observed that a short rest-without-sleep will revive me when I get sluggish or dizzy or just plain tired.  BUT, a sleeping nap is more likely to screw things up more.  So going down for a nap is always a precarious thing.  This time the undertow was so strong, I had no power to avoid it.  I lied down on the bed, and really felt pulled down into sleep.  I woke up some time later, and stumbled into the bathroom to take a Tylenol 3 with Codeine, and stumble back into bed.  I finally woke at 10pm.  It was one of those sleeps where my teeth hurt when i woke, and I was really unsure whether I felt better or worse after it all.

The slow lane

in high school i liked to drive cars really fast.  when i came home from college and i was not used to driving, i learned to enjoy going slow.  really slow.  sometimes i would go extra slow to piss of people behind me who seemed like they were in too much of a rush.  now, i am learning to enjoy walking slow.  because i am often stuck walking slowly home from the subway.

today i was walking home from the subway and there was another (young) woman who was walking as slow as i was.  there were several awkward moments where i was about to pass her, then she was about to pass me.  we were very conscious of each other, b/c we we were both walking *so* slow.  i couldn’t take it anymore, and i walked even slower, and let her move ahead.

Managing the side effects, managing the heat

S and i went to the coop yesterday.  it was EPIC.  an official record: $346.24. it was so hard(core), I almost started crying towards the end.  we got three watermelons! (watermelon is the only thing i can consistently eat everytime.)  i was totally exhausted.  i just sat down in front of the CLIF bars and tried really hard to breathe.  i was actually, kind-of, meditating in the Park Slope Food Co-op. Really.  S sat down next to me.  and we just sat for a minute or so.  while the craziness of the co-op went on around us.

today & yesterday I am doing better.  maybe it was because I didn’t try to work yesterday.  i stayed home and read in bed. (and went to the coop.)  also, it was much cooler today.  the weather has been kicking my ass so bad.  it is the worst that the NY summer can offer.  by the time I made it to the studio I was a wilted flower.

i think i can feel the good effects of coming off the drugs, but its hard to tell because the weather has also been better in the last few days, and i have pushed myself less.

That was complicated, let me try that again: When I got back to NYC the weather was so hot and humid, and my symptoms from the Interferon correspond quite perfectly to how I feel in hot and humid weather, so I was really unsure how much of what I was feeling was drugs and how much was the NYC weather.

Reality Check (first day back)

I went in to the studio today.  I was around for a little over 4 hours.  Mostly checking in with people, saying hi, writing email etc.  Between the work effort and the viciously hot-and-humid commute, it was too much.  I came home at 5PM and passed out soon after.  Its 9:30PM and I just woke up.  I’m groggy and basically need to go back to bed.

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.

Day 20: Done Done Done

I finished my high dose IV Interferon today.  It was emotionally great.  Now I’m trying to finish packing my bags.  My parents have been doing most of it.  I’m at the threshold of tears because it seems so overwhelming.  And I’m just trying to pack my carry on.  Its 11am and I have a 6am flight.

I know I’m really happy to be done, but right now I feel so tired.

Its going to be a long day getting back in NYC.

Day 19: Are we there yet?

Almost done.  Almost done.  Almost done.

Today was the penultimate day.  I should have geeked out yesterday and called it the antepenultimate day.  Oh, this is what my English Literature degree comes to.

Yesterday, the antepenultimate day, I overheard one of the nurses arranging for hospice care for a patient with pancreatic cancer.  She used the word “nonresectable” which I think means it is inoperable.  My grandmother died from pancreatic cancer.  Hearing the word “hospice” was scary, but also reminded me how well I am doing.  How healthy I feel.  How far I am from giving in and going under.

Today I gave all the nurses cookies (that my brother made) and the URL to this blog.  I gave it to my massage/healer person too.  While it was happening, I wanted it to be private from them, but now that I am leaving, I want them to see it.  Ah… control.

I’m starting to feel like I’m already transitioning back to NYC.  I made a haircut appointment (my hair is wildly out of control.)  And I made an appointment with my NYC oncologist so I can learn how to do the self injection pen.

Wait, did you catch that… my NYC oncologist.  I’m so bi-coastal I have two oncologists…  LOL.

Day 17: Hi Fives from the Naturopath

I was talking with my naturopath today, and right after he told me how well he thought I was doing, he reminded me how difficult what I have been through was.  reiterating that no one knows how hard it has been but me; not him (who had cancer at 31), not my mother, who has had to watch, etc.

A year ago my ex girlfriend went from kinda-sad to severely-clinically-depressed overnight.  I’ll skip the dramatic in-the-middle-of-the-night catalyst event, as that was too big and messy for this analogy.  The point is I didn’t get it.  I didn’t understand what she was going through.  I had never been clinically depressed.  I did not know her experience.

The breaking point with my ex was when she called me in the middle of the afternoon when I was at the studio, demanding (there really isn’t any other word) that I come home and make her some chicken.

This i understand now: when you are sick, and have no appetite, and all of the sudden you want something, that thing becomes the most important thing in the world.

This I understand now: when you are sick, and you cannot get something for yourself you feel helpless,  When that illness is psychological, you feel doubly helpless.  When someone does not attend to you, you feel triply bad.

The argument unfolded without these two kernels of knowledge that my cancer has given me.  The highly condensed version of argument went something like this:

me: Can’t you just order some chicken from the place on the corner.
her: If you can’t come take care of me, I will find someone or go somewhere where people will take care of me.
me: (silence) (sigh) okay, I need you to do one thing
her: (some shouting about how she is sick, and she can’t do anything)
me: Take the chicken out of the freezer.

Then I took off on my bike, leaving my assistants at the studio.  That bike ride was the one where I intentionally hit the guy in the suit on the Brooklyn Bridge.  This is the only time I’ve intentionally hit a pedestrian.  He was in the bike lane, walking towards me.  He looked up at me, made eye contact, then went back to using his Blackberry.  It all happened at the threshold of conscious decisions: I took two hard pulls on my pedals, and subtly dropped my right shoulder and clocked him.   Hard.  I heard his blackberry smack to the deck and skittered off in a freefall into the East River (Its okay, the company probably paid for it.)  I didn’t look back to see if he was on the ground.  I wasn’t.  And I had chicken to cook.

The bridge shouldering is both one of my favorite stories to tell, and one of the lowest things I have done.  Funny that.

But the real point of this whole story is the the other thing I understand now that I did not then:  no one person can take care of someone who is sick.  It is just not possible.  It is too much work.  It is too emotionally tiring.  It takes a team.  It takes a family, and I mean that in the biggest sense of the word.

Day 16 with the Oracle of Not Doing

Infusion was uneventful. Passed my blood test.  Got the drugs.  No major side effects.

I was pretty stressed yesterday and this morning.  I got really anxious before Monday treatments because the side effects start again IF my liver function is within a normal range.  I was really nervous my liver would be working too hard and I would not be given the drugs — I have a plane ticket out of here on Saturday morning, and now I know that I am going to be on that plane.  Nice.

Today I spent the morning with LK.  She has been here since Thursday, and took part in the EPIC pizza party and hike.  Today was a little bit of solo time with her.  I met her cousin, and she told me stories about her family.

Early on in my diagnosis I spoke to LK on the phone for a long time.  She kept saying “so M, you realize you are really going to have to change how much you can do, and you are going to have to say no, and not do things.”  And I said something like “yes, yes, just after I finish this next project” or something like that.  And she repeated herself a little more insistently.  And then she offered to say no for me.

The deal was I would either email her to ask if I could do something, and she would tell me “No.”  Or I would simply know that she would say no, and say no myself and then tell her.  So here is our email exchange.  She became The Oracle, and I became the Supplicant.  NOTE: This was all written before the positive result from the lymph node surgery and the second major surgery.

Dear supplicant,

The Oracle accepts your energetic shifts regarding your grant, your now-ex, and your mother, but she wonders about your priorities, given your decisions about how to compose this e-mail. The Oracle would appreciate less self-reflexivity in your tone, because really, she already knows.

When it comes to mothers, there are no mistakes.

Perhaps your mother would like to sew you something to protect your calf from new york city, brooklyn, car insurance, and other contributing factors. It could also have reflective tape, and maybe a family photo tucked inside. The Oracle senses that your mother might not be sure how the pinstripe suit will help you with your skin cancer. Is the fabric supposed to shield you from the sun while you are riding your bicycle? Are you going to grow your sideburns long and buy a big black hat?

The Oracle is considering visiting Portland at Christmas. Would the supplicant join her on this path? The Oracle likes your parents, and is nearly envious of their ability to engage intellectually with a variety of topics.  Oracles cannot, of course, be envious, but if they could be, she would be. The Oracle is also curious about their house and how the kitchen looks now. Although I sense its quiet, pulsing perfection, the tactile reality of opening the fridge would give the Oracle great pleasure.

The Oracle doesn’t really care if you apply for that grant, because many of her fellow priestesses are approaching 50 years old and have applied for that grant for the first time. The Oracle considers SL to be very Wise in his proclamation that there will be time for things like this later. The Oracle will make psychic contact with SL and invite him to join the circle of healing currently in place, held together by an infinite number of people and animals, most of whom you do not know, all of whom wish only for wholeness, smooth scars, and neat incisions.

The Oracle loves you. Take five deep breaths, shut your eyes, and imagine your parents’ refrigerator. Then imagine opening the fridge and being one with its bright, shiny light, sinking into its sterile, nurturing shelves and merging with the salad greens until you feel washed, spun, crisp, and good enough for your mom to present in her favorite bowl.

yours in bliss

LK

On Mar 8, 2008, at 8:09 PM, m wrote:

> Dear Oracle,
>
> I have forgotten many of the things i have not done.
>
> You could say this was a good thing: to forget the things which you decline.  Mostly it was because I am strongly remembering three things I decided not to do, two of which were hard but good to do, and struck hard at my spirit, and the last of which was something I should not have said no to.
>
> I did not apply for a big grant.
>
> This made me feel like my illness and my resolutions surrounding it were finally, actually impacting on my so-called life.  The fact of the matter is that my CV is not my life.  I know, oh Oracle, that I must repeat this many times.  Also, another fact of the matter is those things are such crapshoots, though I do feel like I had a better shot than in previous years, and supposedly getting into final rounds is good just by itself and often leads to other invitations.  Yet another fact of the matter was that I didn’t really have a project that would work for them anyway.  SL reminded me that we aim for long so-called careers, and will be around and alive for the next round in three years.
>
> I did not succumb to the relationship-games started by the woman I was dating
>
> Which is to say: we broke up. She started a fight over my defining boundaries.   I insisted that my boundaries were important.  She said that it was not okay with her the way I was “distanced.” I think she was bluffing, and wanted me to give in to her and come running back.   She thought that I was going to say ‘all right, for you, just this once’ or something.  But i did not.  This caused her to cry and cry.  This was exhausting.
>
> This is overly simplified, as the Oracle does not need the details, but rather the universal truths.  The only detail the Oracle might need to know was that the fight she started was over whether I should sort through her automobile registration and insurance papers to make sure they were in order.  She made it sound like she had spent most of her time ruminating over this seemingly insignificant detail since it had happened five days earlier.  Needless to say, it was an inappropriate request to make of someone you have been dating for a couple of months on weekends.  And so I said no.  And then when she started relationship-games, I also said no.
>
> I also said no to my my mothers repeated requests to help-me-out-in-my-time-of-need.  This was a mistake.
>
> I repeatedly explained to her that there was nothing she could do.  She could not fly here and come take care of me; it would just be more difficult for me, as I would feel compelled to take care of her and she would get in the way of my daily life, which has to continue in some form or another.  I turned down her request to send me money to pay for… take out food… cab rides… etc.  I told her I would take more cabs, and that I could pay for it.  I told her that take out makes me feel like shit.  This is true.  She just got more anxious.  So today I told my mother she could help in whatever way she wanted.
>
> But Oracle, I arrived at an even better way for my mother to feel like she is involved with me and helping-me-out-in-my-time-of-need.  I invited her to make a project with me.  I want to make a pinstripe suit with reflective stripes.  She sews. She is going to do some looking and talking to people. I made a wiki page for the project, made her an account, and invited her to post her research the wiki.  Nevermind that in a spurt of research after I got off the phone, I found someone in the UK who has done it, and patented his process. It is the process of sharing with her that matters, right?
>
> your supplicant
>
> m
>
>
>
> On Mar 6, 2008, at 2:28 PM, LK wrote:
>
>> hon, the oracle has been so slack. I’m sorry. look for her feedback soon!
>>
>>
>>
>>
>>
>> On Mar 1, 2008 at 1:02 PM, m wrote:
>>
>>>
>>> Dear Oracle,
>>>
>>> This week i had to do things I had previously said yes to, and could not say no to.
>>>
>>> The planets were already spinning.
>>>
>>> When my wounds heal, I will pretend to join a gym so I can use their sauna.
>>>
>>> I will perform the breathing exercise as soon as my cleaning lady leaves.
>>>
>>> This week I asked for help.
>>>
>>> I asked someone to come clean my apartment (and paid them).
>>>
>>> I asked someone to rub my back (and paid them).
>>>
>>> I asked someone to rub my body and touch me gently (I did not pay them, they are my regular intimate)
>>>
>>> I asked several people to spend time with me, for lunch, for dinner, just to be in the same space
>>>
>>> I asked several people to accompany me to my doctor’s appointments, and wait for me until they were over.
>>>
>>> I asked my friends to send me funny things from the Internet because laughing makes me feel good.
>>>
>>> I did say no
>>>
>>> I said no to someone else’s intern who wanted me to hold their hand through a software installation
>>>
>>> I said no to three people who wanted help building websites
>>>
>>> I said no to a meeting I did not have to be at
>>>
>>> your learning supplicant,
>>>
>>> m
>>>
>>>
>>>
>>>
>>>
>>>
>>>
>>> On Mar 1, 2008, at 2:12 AM, LK wrote:
>>>
>>>> Dear Supplicant,
>>>>
>>>> The oracle requests that you perform two exercises. One involves breathing through your nose one nostril at a time. Hold the other one shut. breathe in, change nostrils, then breath out and in again. Change.
>>>>
>>>> The other involves locating a sauna in your neighborhood and sitting in it. You might have to pretend to join a gym. It’s probably better if you wait for your leg wound to heal somewhat first. The oracle has heard good things about this place, which while not quite in your neighborhood, feels like a resonant harmony with your current state: http://www.russianturkishbaths.com/enter.html
>>>>
>>>> “being early” is an intense space to occupy. Be very careful. Be sure to look at a wide variety of colors, especially blues and purples, whenever you’re early.
>>>>
>>>> yours in bliss,
>>>>
>>>> LK
>>>>
>>>>
>>>>
>>>> On Feb 25, 2008, at 7:47 PM, m wrote:
>>>>
>>>>> Dear Oracle,
>>>>>
>>>>> I pull at my spinning planets to slow them down:
>>>>>
>>>>> Today I informed a colleague that I would not be able to be a guest lecturer in her class, as previously arranged.
>>>>>
>>>>> Today I told a client I had a health issue and would not be able to deal with their website issues at my usual speed.  (And then delegated it to my assistant.)
>>>>>
>>>>> Today I am going to be early.
>>>>>
>>>>> in supplication and heavy-yoga-breathing
>>>>>
>>>>> m
>>>>>
>>>>>
>>>>> On Feb 25, 2008, at 10:41 PM, LK wrote:
>>>>>
>>>>>> Dear Supplicant,
>>>>>>
>>>>>> The oracle requests that you send data re future activities so that she might better channel your unresolved energies.
>>>>>>
>>>>>> Presenting successful resolutions to the oracle only effects currently spinning planets at their current spin rate.
>>>>>>
>>>>>> Continue with the prostrations, as directed.
>>>>>>
>>>>>> Yours in bliss,
>>>>>>
>>>>>> LK
>>>>>>
>>>>>> On Feb 24, 2008, at 4:53 PM, m wrote:
>>>>>>
>>>>>>> Oh Guru of Calm,
>>>>>>>
>>>>>>> Oh High Priestess of Doing-Nothing-Ness
>>>>>>>
>>>>>>> I report these things which I am not doing:
>>>>>>>
>>>>>>> I did not go to the big event at the studio on Saturday, even though everyone else was there.
>>>>>>>
>>>>>>> I am not doing the alumni interview.  I contacted the Alumni chair, and told him i had an emergency and could not do it.  His problem now.
>>>>>>>
>>>>>>> I am not going in to school for the applicants job talk on tuesday.  Emailed in, and told them I had a medical procedure on monday.
>>>>>>>
>>>>>>> I am not going in to the studio on Tuesday, even though I dont have to go in to school.
>>>>>>>
>>>>>>> I turned down an interview for a exhibition catalogue. They can reprint something i already did. Or not. That is enough.
>>>>>>>
>>>>>>> Your supplicant initiate
>>>>>>>
>>>>>>> m
>>>>>>
>>>>>>
>>>>>>
>>>>>>
>>>>>>
>>>>>
>>>>
>>>>
>>>>
>>>>
>>>>
>>>
>>
>

Somehow Saturdays are so hard

I don’t quite understand, but Saturdays are the hardest day of the week.  I make it through a whole week of infusions with high energy and good spirits, and then Saturday I crash hard.  Same as the previous weeks.  I sleep in way too late.  Have no energy.  Cry for no reason.  Can’t eat.  No fun.

Today the plan was to go to the beach.  Really, it was my brother’s plan.  To take KM to the Oregon coast, and to let one of the dogs play in the wet and.  I was the limiting factor.  He kept asking me if i was ready yet.  I was still in my bathrobe.  I knew that we were going to be getting there really late.  I felt pressure.  And then I started crying.  I didn’t want to hold them back, but I aslo wanted to go.  I also didnt want to go, but I didn’t want to give up and not go.  Oh, what a jumble in my head.

I did go.  It was worth it.  The wind was strong.  The ocean was big. The dog was really happy. I slept on the way there and the way back.

x left this morning (no beach), P left to be with his girlfriend’s family last night, and KM leaves tomorrow morning at some really early time.  LK and I are going to hang out on Monday, but other than that, my friends have returned home.  I am, of course, a little bit sad from that.  But I also know that I have all my friends in NYC when I return.  Seven days.

I’m feeling really stifled by my family right now.  I know they don’t mean to.  But it happens. I’m really looking forward to going back to my regular life.

That said, I’m scared to have to take responsibility for so much of what my mother has been helping me with.  From helping me figure out what I could possibly eat, to making it, to doing my laundry, to supporting me emotionally.  NYC/Brooklyn is going to be a culture shock.  It is going to be hard again.  And there are going to be lots of people.