eyepoke’s blog

my view of the word is very different than it once was.

living in a city, every day you look out windows that have not been washing in a long time.  after a while, you don't notice the grim, the dust, the smog. you see the world. you don't see the dirt. this world, with layers of dirty lens' is what became of my life. each pain, hurt, unexpressed thought, feeling, unrequited love, slight, sadness. each episode of violence witnessed, felt, a harmful word spoke - by me, at me, by others - each added  layer of grime. slowly i saw the world as i did. i walked in my bubble of grime, rarely noting how dirty the view was, how tainted, how isolating the bubbles. together, entwined, in separation, all the colors of the grime slightly different, shifting behaviours, awareness, diminishing the love, the touch, the comfort that flows in.  this was my life.

all these terrible things came and washed away the grime. shocking, painful, gasping for air at what i could see, missing the filter but never wanting it back.  i see differently. i feel differently. i love differently, i live differently.  but sometimes it is far too small. i want to take bigger steps, i want to grow, i want my knee to be at six feet tall so when i bend my leg and pick it up for the next step i can stretch into a space i can barely see is there. 

i am insidiously excellent at what i was.  it sneaks in some days.  the pleasure of simplicity in a thoughtless meaningless way - not harmful but lacking lacking lacking. there is more.

if i hold my hands up i can feel the touch of a thousand people, places, loves, aspects, things i haven't done, things i can do, should do, people i want to give things to.  a million glowing spaces of energy and love...let me lay my hands on your let me show you that this world is not a world of grime and distance but a world of visionary and exceptional beauty.  let us wipe away the insidious excellence of small things and embrace the magnificence in the miniscule spaces where it holds us.

I've passed months without great awareness. The beginning of better was early September.
I flew on an airplane and it only hurt to breathe for three or four days afterwards. This was a huge improvement.
When I flew back to the US, it didn't hurt to breathe.

In Italy i felt separated from my cancer, divorced, even. I left it behind. No more living with it hiding behind the door or molding the dustballs into balloon animals. It had become a definition of a self that I had allowed to control part of my life.  No more. It is very liberating.

In mid-october I realized I was happy, felt well, and could hold sustained conversations with other people. It had been a long time since I could connect thoughts, hold a conversation, and care at the same time. Sounds dreadful, no? It was.

Everytime I thought I felt better, something would occur months down the road and I'd realize I was so no OK and my friends never told me. Yes friends, I am mad at you! I wish you had told me. No k, this is not you, no, you are not yet back. Were you afraid I wasn't coming back? I needed you to tell me not to try to push. The devastation of failure I kept to myself. Truth would have been kinder.

This time I feel better, and I know to ask. Is this me? Are you sure? Is there more still missing? Can I think? Like before? I get a little head wagging. I can't tell what's truth. I'm closer though. I feel that.

After I go on an airplane, I seem to sleep for the better part of five days.

It makes me think that flying is very bad for us, all of the time.
It takes illness for me to understand that it is having serious and adverse effects on me.

What is it doing? Is it like gibson says, and I am waiting for my soul to catch up?

Does sleep help this happen?

I went to the opera friday and came home at midnight. I slept through parts of the third act, barely functional.
I woke up at 10.
I walked to the farmer's market because i needed fresh veggies and fruits and flowers. I
 was home at noon, asleep at 1.
I woke up at 4pm.
I ate and went to Trader Joes and Whole foods.
Home at 5.30, ate again.
Asleep by 7.
Woke up at 11pm. 
Snack.
Sleep.
Woke up at 8.30am. I moved to my sofa and sat down.
I woke up at 11.30 when a friend came by.
She left at 4pm (during her visit i had two meals).
I was asleep by 4.30.
Woke at 7.
More food.
Asleep at 10pm.
Woke up at 9.

God i'm tired.

My mother told me that she had been speaking to an oncology nurse she knows about how tired I am.
The nurse asked how many hours a night I slept, that I should, at 4 months post radiation, be sleeping somewhere between 10 and 12. (I don't except in fits of narcolepsy-like behavior.)

She also said that if I push now, rather than being a year or so until I felt better, it would be a year and a half. Pushing, exercising, all these things, are actually detrimental. The more I push, the more harm I do. So I should be patient, and sleep, and stop trying to rule the world. Or a small piece of it. Or my body.

It is good advice, good information to hear. But sleeping half my life away seems excessive.

Probably better than dead though.

i woke up this morning and decided to open the weeks postal mail.
50% junk, 10% bills, 40% cancer.

Insurance statements are complex and I read them to understand what was paid, where I stand, etc.
Medical bills must be reconciled with the insurance statements. this is harder when you have a lot of appointments and tests.
Then I also have letters from doctors, copies of reports, etc.

I realized I needed to call the radiation oncologists office and schedule an appointment for June. It does take a while to get in, and I am due my 6 month post-radiation checkup then. I thought of it this AM because I am so exhausted and wanted to upgrade my immune system. I realized with all my doctors, there is not one to logically ask 'WTF' regarding my exhaustion etc. Miserable feeling.

There is a good cancer magazine called Heal. It is about living with cancer. There is another called Cure. I don't get them regularly. I pick them up when I am in the hospital. They are great but a regular reminder I don't want in the mail. Funny I write that, as the medical bills etc. don't stop. My reminder is weekly, not monthly or quarterly.

I was reading it one day and a woman had written an article about the emotional after effects of cancer. She realized she needed to get past some things and wondered if the 5 year mark that one often hears about would be significant for her. She asked her doctor at her next check up if, at 5 years cancer free, she was considered cured. His response was 'for breast cancer you are considered cured when you die of something else'.

Um. Excuse me? I can asymptotically approach the end of cancer....Lovely.

Have you ever had an endometrial biopsy?

So boys and girls...after all ready having a speculum holding open some parts, strange and scary tools are inserted to open the cervix. The cervix opens to let a baby out. As far as I can tell, this is what it opens for. Not for something to be inserted, scraped around, and yanked out. The doctor holds up a thin tube and says 'see, very small!' and I say yes and if someone was going to insert that in you....

Stunningly painful and I wish to hug all my friends with children. I imagine childbirth is much harder.

So I am stunned and out of breath from the pain and ask a question about one of my symptoms. and he says 'oh fallopian cancer, the odds are very small' and i say, 'the odds of my having breast cancer were .05%' and he looks sheepishly at me (he is on the computer typing in requests for more tests), and says 'point taken'. meanwhile i am making Rorschach blood stains (yes i considered bring them home with me, and pondering them for what they could mean about having ovarian cancer. yes, im demented.)

Then he explains the other tests to check further for ovarian cancer, etc. The blood and hormone work to discover other aspects of cancers. I look at him, still in pain, and say 'cant i just have syphilis? gonorrhea? something simple?' he laughs and says no one asks for that stuff. I just want something that doesnt require a KNIFE to fix it. or sharp edged objects. 

Or how about this wacky idea... no pain inducing tests or instruments, physical or emotional? Let's make a PACT. NO MORE.

there are two of me, slightly overlapping. left leg - right/left combo - right leg.

we march with more fluidity than at a three legged race.

one of me marches on, no stress on waiting for results, no worries that next is next and news is news. work to be done, people to see, life to live, priorities are different and we don't spend time waiting as hard as we used to.

the other one lays down a lot. ready to be dead. not interested in the process between life and death, binary existence.

right now we walk. step step step. step step step. step step step.

December - tired. depressed. lost.
January - suicidal yet thankful to be so well loved.
February - frustrated. anguished. struggling.
March - exhausted. ill. happy!
April - happy. dazed. being tested for additional cancers.

Radiation burn lasts 2-4 weeks.
Pain (internal) lasts 2 months to a year.
Radiation lag (similar to jetlag but without the fun travel) lasts 2-3 months.

Next doctors appointment, February.

I went to Rome for the weekend post-treatment. I wanted to wake up somewhere else, not where I've arisen and walked to the hospital each day. I have yet again totally underestimated the exhaustion and lack of super-hero-like-powers I have post radiation.