Rest stop

I feel truly bizarre. Vibrating and displaced disconnected otherworldly. I know that my feeling is a result of dragging along my suitcases of emotional cement, my cancer cement blocks of wet sponges of suck. 

I want to report to you. This is just a report from inside the office of an actual real-life cancer patient. Doesn't mean my experience will be the same as anyone else's, but I think it is important to tell what happens to a person when they do this thing called cancer, America, 21st-century.

I'm at the stage of radiation right now. I just started radiation a few days ago.

PAIN

Today I awoke at 2 am in searing recognizable pain - my left shoulder throbbing with a hot poker with every breath, every very shallow breath. I began to sip air like a turtle - willing the oxygen molecules to float down my throat rather than have to inhale them because the inhalations were stabbing me. 

I know this pain, I first met it in 1996. It is called idiopathic pleurisy. (Because I'm an idiot and pathetic, just kidding). If you see the word "idiopathic" on some kind of medical document about you, or hear it, here's what it really means: we don't know

For some reason, my body does this damn pleurisy dance to me when I am under extreme stress, like the stress I was under after open heart surgery in 1996. Or right now. Something in the pleural lining - which is some kind of weird sack encasement (like sausage casing?) thing that goes around your lungs -- gets hurt or inflamed or scratched or rubs something inside in a horrible way. Like rubbing two open wounds together - as your lungs expand with each breathe the outside of the lungs where the problem is, rubs the inside of the pleural lining where its problem is, and it causes excruciating pain. 

I've been to millions of doctors about this and learned a lot about it, although it's still very mysterious.  NO ONE KNOWS why the insides of some people's pleural linings decide to get sticky and ouchy and bloody and scabby and searing. And the pain is relentless, unless you can figure out a way of living that does not involve breathing. 

Imagine way down in the depths of the inside of your goopy gooey lungs and heart and encasements and sacs and fascia and mucus and membranes some nerves are on fire. The odd thing is you don't feel the pain way down in there, because this kind of pain causes what's called "referred pain" meaning that the long nerve that is so pained sends its pain signal somewhere else at the other end of its longness. For me this is in the left shoulder. When this freakshow first hit me a few weeks after open heart surgery in January of 1996, I woke up one unholy 3am into amazing, bright white, and literally awesome pain. Many ER trips, much useless discussion until a doctor finally figured out that it was pain from the pleural lining and put me on steroids, which took the pain away in 30 minutes. 

In other words extreme reduction of inflammation helps this thing more than pain medication. Nothing is more efficient at reducing inflammation at the speed of light than prednisone. It's like magic. But it's nasty evil stuff too. It will make you feel all jacked up, you can't sleep and you feel like you're a drug addict. Over time steroids can cause things like weight gain, winning the Tour de France, a round face, and, oh, perhaps a little psychosis!? I was on and off prednisone all the time that year. Then they put me on naproxen for two years, which you can now buy at the store under the name brand name Aleve, an NSAID - like ibuprofen. After a couple of years I weaned myself off of all that junk to wing it.

Since then this pleurisy pain stabbing murder thing happens to me just every once in a while, seemingly out of the blue. But...I know my body. When I'm completely freaked out with stress on the inside, even if it doesn't show on the outside, this pleurisy thing comes back. It came back last night it at two a.m.

I wonder if this pain, my personal custom made stab, is a way for my body to force me to stop. Like the pain of childbirth, when it hits you may not continue doing what you're doing even if you want to. Right now I'm laying in bed, taking Advil where I have been pretty much since 2 o'clock in the morning last night, except to get a ride to radiation, get radiated come and come back home. Okay! I hear you. I'm resting.

Too much. Too much right now. Too much muchness. Husbands who are in Vancouver British Columbia or Miami or Denver or Oklahoma City, kids who are in homework detention or practicing for a play till evening hours, mulch that needs to be spread, lunches and breakfasts that need to be made and delivered and packed and uneaten and rot in a lunch box or a car and no one cares. Mounds of wet towels wet towels wet towels, how in the world can we have 43 white wet towels in one bathroom or on a floor? I call a moratorium on towels. Each person gets one small towel. Or forget that, no one will listen to my towel philosophizing. Nor should they.

RADIATION

Today I had my fifth radiation treatment. This means I'm 25% of the way done. I now have the drill down pat, in terms of undressing, putting on my pristine pillowcase, and laying on my table. I have no had more time to contemplate the actual radiation, and instead of getting more used to it, I am getting more fearful of it. As robotic arms move above me, they scare me. The face of the radiator seems to be looking down at me in a menacing way. 

It descends upon me. Sees me. It (she?) clicks and whirs and groans and moans as it goes around and over me and sets like a setting sun to my left, about 20° below my body in preparation to shoot upward at that angle through my breast. Then, it pauses, ready to shoot. I try to breathe. Eyes closed. And wait.

I hear a click and a loud buzzing noise starts. I close my eyes and count out the seconds. It is 27 seconds. Not very long, but the seconds are very slow. The machine then clicks loudly and goes blank. Cold. Martian. Obsidian.

After a pause, the blank black glass faced machine awakens again. It jerks up from the left and crosses my horizon, moving over my body planet from left to right, crossing over me, right over my face, to position itself at the exact opposite side of my breast - now on the right side of my body. At about 2 o'clock straight up and to the right, it stops. The middle teeth are open in their blank upside down mouth shape. They are ready to shoot the radiation beams through the same breast from the opposite side. Run through all the tunnels backwards. This side - 21 seconds. .

During these two blasts, radiation beams go through me like the Road Runner's painted on mountain tunnels. Only the beams are made of light rays, x-rays, and travel even faster than the Road Runner. And there are an infinite number of them, making millions and millions of teeny tiny tunnels through me. From floor to top. Every cell is radiated. (And thus inflamed and sore). This is called full breast radiation. It fizzes.

That's my prescription.

In the interlude these two radiation blasts, one from the left, and one from the right, as the machine is moving over me in its trajectory across my horizon, I wonder, what if? What if the machine went crazy and started radiating straight down at me, here halfway, shooting X-rays right into my brain and killing me? Does it have an intelligence? A will? What if it one of the technicians behind the fort knoxian two foot door becomes a psychopath and pushes a button to commence radiating death right down into my heart and my chest and my neck and my lungs and I caught on fire and exploded? 

Or, what about the suicide wish that we all have deep inside of us? The desire to pierce the veil? When the radiation is on, I have a desire to sit up or move my head right in the way of the beams and kill myself. I have to concentrate on staying still. This isn't a very strong desire, it's more of a curiosity and the natural death wish that we all share, like when you stand at the edge of the Grand Canyon. A mystery.

REST

I'm completely wiped out today. I was awake from 2 AM on. I don't feel good today. They assure me that the radiation is not the cause of my pleurisy or my tiredness. It's just me.

IT IS OK

Some very good things too:
My aunt is getting better after a spell of not feeling so well herself. At 90 she's an inspiration. Hello Aunt Marilyn!

Books - reading and reading my way through life. And my two book clubs. One group came for dinner last night and we shrieked with laughter while eating and yelling and drinking and arguing brilliantly with young funny girls waitressing about us in my dining room.

Friends - Susan P. popped by and visited me at radiation yesterday - impromptu radiant support.

Vi Fi n Mike n pals - my little hilarity reality show - we have mega fun and I love it. I love the beautiful mess of the anthropological creature called the American teenager - they are enchantingly hilarious. See photographic evidence.

Music - I can NOT GET ENOUGH of superbly loud radiating excellent music - these radiating waves do not hurt me or scare me they calm me and wake me and heal me.

My latest loves:

1. "Haunted" by Beyoncé 
It's what you do

It's what you see

I know if I'm haunting you

You must be haunting me

It's where we go

It's where we'll be

I know if I'm on to you, I'm on to you

On to you, you must be on to me

2. "Uncertainty" by Jagwar Ma 

I've got something pouring,
through a personal atlas,
and if the weather was warning,
even heaven should practice.

I've got something drawing,
like a column that's our own,
and if the weather was warning,
the stars are drifting the shallows.

How can ya', how can ya' look so gloomy,
When you're gloomy, howlin', look so good to me,
How can ya', how can ya' look so gloomy,
When you're gloomy, howlin', look so good to me.

Be my night,
be my night.

You take on everything,
in a peculiar manner,
and if I'd be so reckless

3. "Black Skinheads" by Kanye West 

For my theme song, my leather black jeans on

My by any means on, pardon I'm getting my scream on

Enter the kingdom but watch who you bring home

They see a black man with a white woman at the top floor they gone come to kill King Kong

I AM OK

WILL BE OK

GETTING THROUGH IT

Some pix from my week:

I'm Radioactive

I'm off.

I have driven by the cancer center office on MLK for years. I first noticed it in 2006 when Annabelle and I found ourselves getting to know this neighborhood well when my mother moved into The Christopher House hospice, in April of 2006. MLK is in East Austin - which used to be thought of ("Thought of" can be a hilarious idea, right? By whom? White people/suburbanites/saltines - that's who. Me.) as the "bad" part of town (read: black and Mexican) back in the whatever decades. Now this is the tragically hip part of town where we reside. This gentrification (rape?) concept is a whole other topic - likely more valid than my topic - but I'm not addressing it (much) here, now, as I am today writing about my experience as a patient of radiation.

So anyway - I know the location of this cancer office /radiation place like the back of my hand. I drove by it a lot that one week before my mom died and averted my eyes, thinking, yuck, so glad I don't have to go THERE, to a horrible CANCER place. Only other people go there. The other. Others. Not me. Not us. The other. 

And now that we live within striking distance of this place, I've been driving down MLK several times a week for 10 months and I know exactly where this place is by heart. 

Austin Cancer Centers - Central Austin. Radiation Oncology
2600 E. Martin Luther King Jr.

But today, I got lost.  Waylaid on the one mile drive there. I drove down the wrong street, made a wrong turn and became disoriented. I felt backwards and dreamy.

Then I arrived and parked. Next door in the playground of an elementary school a little girl screamed. She then screamed again and stopped she then started screaming hysterically again over and over and over again. I looked but could not see who she was or if there were any adults. Then it was quiet. I walked in to the cancer office and started to play my part. The part I had in this particular play was pretty familiar to me: walk in, smile, say hello, and sign my name on the sheet to say that I had arrived. I wrote "Austin Cancer Centers" instead of "Amy Adams" in the space designated for patient name. 

These actions betray me.

I was greeted by a pretty young lady named Allison, who took me down a very long hallway, and then another very long hallway to a dim cave location inside the huge square building. I then signed away my safety, perhaps, on a form that specified the dangers of radiation. I asked her to make a copy so I could read it later. 

She then removed my custom crunchy blue paper pillow from a secret location and showed it to me. I took a picture. Then she took me to a little changing area which is just a 2' x 2' corner of a 30' x 30' room with a hilarious shower curtain sort of arrangement contraption on the ceiling. I was told to take off my bra, shirt, and necklace to put on a pillowcase. Put on a pillowcase? Well, pick up a pillowcase and hug it in front of you and then walk out into the big room. Like walking onto a stage. The pillowcases were extremely white, beautiful, gleaming, and ironed stiff. In a perfect, tight, neat, beautiful stack. Crisp. Square. They're absolutely gorgeous. Martha Stewart could use them as table napkins to host a royal wedding.

I donned (hugged) my gleaming white pillowcase and came out from behind the curtain. She led me to a large long thin table that was about six feet away from a huge roboty/spaceshippy machine that has a vaguely human hugging aspect. At the head of the table my blue crunchy paper pillow was waiting for me. I lay down upon it on and raised my arms back into the position that I had first formed when I made the indent in the pillow a week or so ago. It didn't feel as comfortable as I thought it would. Had my body changed shape? Allison put a large triangle pillow under my knees.

After you are arranged on the table and ready to go, the whole table with you on it is magically backed up so that you were underneath the robotic robotic arms of the big machine and it can do its magical radiation stuff on you:

After Allison had me lay down, Kevin came into the room. He and Allison explained to me that they would be taking some images, and then coming in the room to draw with a black marker, around the "treatment area." I contain areas. After fussing around with lining me up correctly they would give me another tattoo. Or if I were I undelighted by the prospect of another tattoo, I could have a special kind of tape but it would be sort of hard to keep that on for four weeks. I decided to have another tattoo. Did not hurt.

Kevin gently scooted me around hither and yither and then said not to move. They went into another room, and the table I was lying on jerked smoothly backwards so that I found myself underneath the machine. Welcome to the machine. I did not move, except to breathe. I found myself breathing very shallowly because I was worried that if I took a deep breath it would move my chest around too much and the radiation would possibly not hit the right areas, and maybe even hit an area that it shouldn't hit like my lungs or my heart. Finally I had to take a deep breath. 

Each inhale made the pillowcase on me scoot around a little bit. It was folded up so my left breast was exposed and it was sort of hanging off the right side of my chest and I feared that if I took too many more breaths the whole thing would fall off. Not that I would mind, but it was a bit cold in there. What is the pillowcase versus breathing etiquette for such a situation? It held.

Way above me 12 to 16 of the ceiling panels had been removed, and replaced with beautiful backlit pictures of trees, as if I were looking up into a blue sunny sky through some pink budding and white budding trees. But really, I wasn't. 

I lay still, anticipating. Across my right horizon came a curved gray huge metal flat thing that rotated over me and went in and out of my sight. The machine hummed funny noises. I think they were taking images. After about five minutes of this, Kevin came back into the room and he said he needed to draw the treatment area on me with a pen. This seems incredibly Fred Flintstoney - to draw on me with a felt tip pen - after all this high-tech computer imaging x-Ray radiation lasers magic oncology tattoos computer programming physicists 21st-century stuff. Another bit of the dadaism that is my life. With an extremely gentle touch he drew a dotted line on my skin under my arm under my breast, and up the middle of my chest. It felt like a kitten. It tickled.

They then left me in the cold room by myself. Time for action. A two foot-ish wide glass plated flat machine robotic thing (like a flat TV screen) came into the right side of my vision and stopped. It then hummed and moved machine-like-ishly closer and closer and closer to my chest. It was a little bit scary, and I was wondering if it was going to stop or crush me to death while I lay there passively, arms over my head, naked, sticking my chest up into its arriving crush. I imagined that maybe all the radiologists in the hall had dropped dead from some poisonous gas, and aliens were secretly taking over and were using the machine to crush me. But that didn't happen. 

My head was tilted to the right, in its crunchy pillow, and I was not supposed to move. I peered sideways up into the glass front of this machine face thing that had descended unto me, and I could see myself reflected in it, and beyond my reflection I could see into it - like looking into a metallic mouth. In the reflection I could see a red thin line of laser light going across the bones of my ribs underneath my breast. Then I heard a loud humming sound. I think this was the actual radiation. It seemed that my left breast kind of hurt or tingled during this time but I think that was psychological. 

Inside the glass of this machine, there were slotted stacked thin strips of oily metal, like louvers or a fence - hundreds of them, each a tenth of an inch thick and about ten inches tall, with segments that could come apart, stacked next to each other. This was a fleeting glance - my guesses may be off. They moved together sort of like teeth - or a curtain - they opened and closed mechanically sideways and by section, and at one point they split balletically, clickingly (vaguely Martian) into the shape of a flat half circle. Into that arched hole I could see nothing but black. I wonder if this arch was sort of like the shape of my breast and the metal teeth things had opened, like the shutter of a camera, to allow the radiation to my treatment area? This visage reminded me of the mouth of the creature in the movie Alien. I closed my eyes.

I will do sixteen sessions like this. After those, I will do four more sessions that are called boost sessions, that will not radiate the entire breast, but will be focused more intensely with more energy, just to the inside of me where the tumor used to be in my breast. Most of these will be at 10 o'clock in the morning with a few exceptions.

I put my regular clothes back on, although I hear that pretty soon I will not be able to do this because of pain. That it will be nicest for me to go topless. Right now the whole breast feels kind of humming. Hurts a tiny bit or maybe it just feels sorry for itself stupidly. Again I don't know if this is psychological or physical. 

I feel a little off, a little queasy, a little spacey. 

My mind is constantly humming with music, it is my blood. So of course today my brain is flooded with the song "Radioactive," by Imagine Dragons. It is playing constantly in my brain, plug your iPod in to me if you want to hear me

I'm waking up to ash and dust

I wipe my brow and I sweat my rust

I'm breathing in the chemicals

I'm breaking in, shaping up, then checking out on the prison bus

This is it, the apocalypse

Whoa

I'm waking up, I feel it in my bones

Enough to make my systems blow

Welcome to the new age, to the new age

Welcome to the new age, to the new age

Whoa, oh, oh, oh, oh, whoa, oh, oh, oh, I'm radioactive, radioactive

Whoa, oh, oh, oh, oh, whoa, oh, oh, oh, I'm radioactive, radioactive

I raise my flags, don my clothes

It's a revolution, I suppose

We'll paint it red to fit right in

Whoa

I'm breaking in, shaping up, then checking out on the prison bus

This is it, the apocalypse

Whoa

I'm waking up, I feel it in my bones

Enough to make my systems blow

Welcome to the new age, to the new age

Welcome to the new age, to the new age

Whoa, oh, oh, oh, oh, whoa, oh, oh, oh, I'm radioactive, radioactive

Whoa, oh, oh, oh, oh, whoa, oh, oh, oh, I'm radioactive, radioactive

All systems go, the sun hasn't died

Deep in my bones, straight from inside

I'm waking up, I feel it in my bones

Enough to make my systems blow

Welcome to the new age, to the new age

Welcome to the new age, to the new age

Whoa, oh, oh, oh, oh, whoa, oh, oh, oh, I'm radioactive, radioactive

Moving through the experience

I'm moving through the experience of being a patient. Or the experience is moving through me - of learning how to be patient. Not learning just how to be A patient, as in "a human being who has to go to doctors and do stuff that the doctors say," but, rather, I am learning the essence of patience. I am having to learn this whether I like it or not, because the nature of what's happening to me has been so very out-of-control and so very slow.

Somehow or somewhere or someone has goofed up my plans for radiation. Someone has planned my radiation of goof ups. Some goof has upped my radiation for plans. Somewhere has plans for my goofing up been radiated. Things got a bit fucked up in the planning department. Yet. It will be ok.

Still, I have not been summoned to a table to have radiation shot through  my breast. Phone calls have been made, emails have been sent, phone calls have been received, mistakes have been made, notes have been unread. For reasons unknown, my doctors have not communicated with each other enough, and my case started to fall through the cracks. No one was calling to set up radiation. I have cranked the show back up and I'm about to go onstage soon now, I think. Everyone around me is angry about this, but I don't see much use in the anger, and I am patient.

I've been lingering in the hallway of my cancerous season. I've been waiting. I've been attending free yoga classes for breast cancer patients given by very kind and amazingly calm woman. She wears long white flowing shirts, and loose pants. Around her neck is a beautiful long necklace that sways down to her stomach with a long bright red fringe at the end. It is made of beautiful red beads with blue and yellow beads also. It is reminiscent of a catholic rosary in its weight and swing.

The class is kundalini yoga, which is very different from any yoga I've ever dabbled in, and dabble is a bit of an exaggeration. It is not the yoga of fierce fashiony stretchy sexy warrior poses featured in Athleta catalogs where thin coltish blond beautiful women in bikinis stand pretzeled and backwards curled on beaches in Hawaii. 

The word kundalini means awareness, and this form of yoga focuses on energy, awareness, and mantras that awaken your own inner strength and energy. At least that's what they say. It involves the breath and something called breath of fire, which is akin to snorting in and out as loudly as you can, like a serious pig. Of course the eighth grader in me finds this funny, but then the gravitas of who is in the room tamps that right back down.

Each set of poses or sequence is called a kriya. In one kriya today we sat with legs crossed and then reached forward with our arms and grabbed at the air rather violently. We were instructed to open our hands as widely as we could, fingers splayed,  and to fiercely grab prana (I think this is some sort of positive energy of the universe or something) and then jerk our arms backwards into our chests as quickly as we could to bring it in to our selves. To do this while sticking out our tongues and yelling out a painful groan as loudly as we could -on the exhale. To do this over and over again frenetically, yet calmly. Lamaze-like. We were moaning outward, sort of like screaming out the grief of cancer. With tongues out like Maori warriors. If you think this sounds very strange and awkward you are right. However it was also very calm and normal. A bunch of grown ordinary seeming women and a few suburbany men sprinkled in did this quietly but loudly, calmly but violently. There are no pretensions at all in this yoga class. The woman next to me was wearing khaki Capri pants and a regular black nice work shirt, and in fact, she was going right back to her job after this class. People wear jeans or maybe even a business suit. You could, no kidding, wear pantyhose and a skirt in there and no one would give it a second thought. No one cares anything at all about yoga culture in this class. 

If at any time during the class you don't feel up to doing the particular kriya that is going down at that time, many of which are not very strenuous as most of them are done sitting down, you're invited, in fact invited politely and encouraged, to simply lay down or stand still or sit. It would be perfectly fine for me to go to class one day and say, "I don't feel very well, I'm going to lay here on my mat in the middle of the room on my back with a Mexican blanket over my body, and my head on the pillow, and just watch the class from the ground." Or, I wouldn't even have to say it, I could just dream it, and the other people could understand my dream through the air.  Everyone would smile solemnly at me and say "yes, that is good, we are glad you are here." Or, they would dream it back to me, beam it back to me. The class is free and open to our special club, and it meets forever, every Wednesday from here until eternity.

When I went to the first class about a month ago, a very friendly woman named Cristina, smiled to me after class and we talked of juice. At the second class she brought me a beautiful glass bottle with a rubber stopper full of a special juice she had made just for me with apples and ginger and kale and spinach and broccoli. She also gave me xeroxes of the covers of some of the best books that she has read about cancer, and a recipe for the juice she was giving me. She pressed these into my hands with a warm smile and said "Yes, yes, yes! Drink this! You keep the bottle! It's for you!" I drank it up straight in the car. It was crisp, green, and 1000 times better than anything at Whole Foods or Juiceland. 

I'm moving through this experience, this crowd of women, The wall of surgery, the curtain of radiation which I have yet to pass through. The chemicals are still moving through my body from chemotherapy. These mornings when I wake up I can barely walk, I feel like my joints are made out of rubber that is then pumped full of liquid cement. My skeleton hurts. My knees and hips hurt, my hands hurt. Stairs feel bad. I don't know if I'm getting arthritis, or if chemotherapy has affected my joints somehow. Again, I cannot get a clear answer on this. It could just be coincidental timing, it's just yet another thing that I don't know. Hobble hobble, rock, rock rock, rock. I rock back-and-forth in my walk, my gait is stiff, but it sort of works out after I walk around for a while. 

Right now I'm killing time 

Or living life?

I don't know where I'll be tomorrow.

That reminds me of Journey.

Falling asleep in the parking lot

The parking lot of the sun.

I'm so tired I could sleep here in my car at the parking lot at Seton Northwest Hospital. Or in a bench behind the smoothie bar at Whole Foods. Or on the floor in your living room.

I just came from a room where I lay on a narrow bed on top of crunchy thick paper pillow. A very nice technician named Christina inserted a tube into the pillow and blew it up with warm air so that it formed around my body. It formed specifically around my body and then froze there and somehow this frozen indentation was memorized by a computer. This is now my radiation pillow and it will be driven over to a different office today so it will be where I will be when I get radiated next week. I have my own personally indented crunchy blue paper pillow.

She then told me to make myself into a heavy bag of sugar so she could move me around. She said for me not to help at all but just a slump there as heavily as I could. I was naked from the waist up with my arms over my head like a ballet dancer. I slumped there like a sack of sugar while she gently moved me around under some red lights until my chest was perfectly aligned. (To what? A star?) She then pushed a button and my body jerked backwards into a CAT scan machine where I could look up and see a three inch white plastic alien stuck to the ceiling, which was Christina's little friend. 

I laughed. He was cute to look at for a few minutes. Personally, I think they should put a poem on the ceiling of the tube room/machine for us scannees to read. Or maybe some puns. Something for us to think about while we lay there contemplating our absurd use of time. 

Here are some suggestions, the first a poem:

         Keep me fully glad with nothing. Only take my hand in your hand. 
         In the gloom of the deepening night take up my heart and play with it as you list. Bind me close to you with nothing. 
         I will spread myself out at your feet and lie still. Under this clouded sky I will meet silence with silence. I will become one with the night clasping the earth in my breast. 
         Make my life glad with nothing. 
         The rains sweep the sky from end to end. Jasmines in the wet untamable wind revel in their own perfume. The cloud-hidden stars thrill in secret. Let me fill to the full my heart with nothing but my own depth of joy. 

By Rabindranath Tagore

Or, some not poems:

I stayed up all night to see where the sun went. Then it dawned on me.

PMS jokes aren’t funny. Period.

Haunted French pancakes give me the crepes. 

Velcro, what a rip off! 

A cartoonist was found dead in his home. Details are sketchy.

I used to work in a blanket factory, but it folded. 

The other day I sent my girlfriend a huge pile of snow. I rang her up and asked, “Did you get my drift?” 

When I was in the supermarket I saw a man and a woman wrapped in a barcode. I asked “Are you two an item?” 

A dog with his leg wrapped in bandages hobbles into a saloon. He sidles up to the bar and announces “I’m lookin’ fer the man who shot my paw.”

When the scanning was complete she pulled me out like a drawer. The machine spat me out. 

She then tattooed me with three tattoos, by hand with nothing more than a needle and a bottle of ink, like they do in prison. First she gave opened a big bottle of very black ink and with a wooden toothpick type thing dabbed a few dots on me - one to the right side of my right breast, one to the left side of my left breast and one kind of in the middle of my chest. (I think, I couldn't really see, because my head was still nestled in its blue crunchy pillow). 

She then took out a long thin needle in a plastic package that was sterile and she told me she was going to push the ink into my skin in three places. Tattoo me.

She showed me a faded gray tiny dot on her wrist where she had tattooed herself. It looks like a pale gray freckle. She put the needle over the skin right over the ink dab on the right side of my breast where she had dripped the black ink and said "ready?" I said sure, and she counted 123 as she pressed the needle into my skin. It hurt, but it was kind of interesting to to feel the needle slowly go in about a half an inch. Actually it felt more like she stuck it in 3 or 4 inches but I know this is not true. I felt like she was a sewing machine and I was a bolt of fabric and the needle was being pressed in slowly for three seconds. Then she pulled it out. She did this in the two other places, and the one on my left breast, the one that will be radiated, did not hurt at all because my nerve endings over there have been pretty much shot.

I am now permanently inked. I have blood and black ink smeared around my chest in a few places under my clothing.

I asked her why I had to get radiation if I've already had four surgeries and chemotherapy. This person as a technician, but she was very kind, and I find that I get dribs and drabs of information here and there from all kinds of people. You must infer and infer and infer and absorb and absorb and absorb and overhear and ask and read, and steal information, and gather it up into your basket of cancer information, if you want to be informed. 

Here was her explanation: when you have surgery and they are lifting the tumor out of your body, parts of the evil dripping poison tumor glob can drip back into your body, and leave tiny little microscopic cells of cancer that can then reconnect and grow. Also when the surgeon cuts into you little tiny bits of cancerous cells get sliced and kind of drip off the edges of the sliced area and float around in there. In other words cancer is made up of things that are so tiny that there is simply no way to tell if you get them all out through chemical medicine, or surgery, so the radiation is just one more blast of deathness to go in there and kill kill kill whatever's in the specific location that they have mapped out as the originating tumor site. 

The only problem is that these rays kill anything. So I will have killed skin and killed tissue and possibly the radiation can also cause mutations in other tissue that could then turn into cancer. However she assured me that the doctors know exactly what they're doing, and that research shows the patients that undergo radiation on top of chemo and surgery have a much better land chance of long-term survival. So I'm going to do it.

Probably start next Monday, although I am now awaiting a phone call from a person named Kevin who supposed to be 6 foot three.

I feel sleepy.

Go into the light

Finally I'm about to be radiant. It's about damn time.

Normally breast cancer treatment goes as follows:

1. Surgery - to cut out of your body whenever cancer that they can find, see, feel, or infer. Get it the hell out of the body.

2. Chemotherapy - only if it is determined that some cancer cells have moved outside of the original tumor area, i.e., they are either found in the lymph nodes or your actual cancer cells, or even worse, actual other tumors, can be seen somewhere else in the body, other than the site of the original tumor. In my case, I had a tiny group of cancer cells that showed up in two of my lymph nodes, and so I had chemotherapy even though there was no other evidence of cancer anywhere else in my body. (Note: occasionally a patient undergoes chemotherapy first, to shrink a large tumor before surgery is done.) If your lymph nodes are clear, you get to skip chemotherapy. 

3. Radiation - zapping the original tumor site with zapping radiating zaps that kill any remaining cancer that could still be there. Ironically radiation also gives you cancer but let's think about that later.

4. Hormone therapy - many breast cancers, in fact I think probably most of them, contain cells that are extremely sensitive to estrogen and progesterone. If this is the case, which is true for me, then you take an anti-hormone pill for 5 to 10 years after everything else is done. There are several brands of these types of pills, the most common is called tamoxifen. The other day driving and twirling through radio stations trying to escape pop tedium, I hesitated on one station a sec so I could navigate IH35, and in that tiny universe of a moment I heard a woman call in to tell some kind of story of happiness on "joy day" and her story was "Oh my goodness praise the Lord, praise Jesus, we are so happy that my mother can finally stop taking that horrible dreadful medicine tamoxifen - that was the worst thing she ever did! We are so happy!" I changed the station and laughed out loud. You don't need to tell me that most people don't have too many bad side effects with this medicine, believe me I've heard way too many stories about it, both bad and good. I thought it was absolutely hilarious that in driving down the highway at 70 miles an hour slipping around radio stations that I happened to pop into this sound byte. Was it a warning? A joke? An insult? Or nothing, more of the dadaism that is my life? I think it was that last one.

Most patients pass through these four stages fairly quickly, and in an orderly fashion, boom boom boom. You should have chemo a few weeks after surgery, you should start radiation a few weeks after chemo, etc. blah blah blah. For me, I got hung up in the surgery loop in a Spongebobishly absurd way. I had to have four surgeries - two before chemotherapy and two after chemotherapy. This completely goofed up the entire system and calendar for everyone involved...all of the doctors and nurses and schedulers and offices and telephone answerers all pretty much forgot what was happening who was on first base who is Amy Adams who is which doctor and what doctor has done what or is planning which and should be talking to which who? When did somebody have what surgery and who where what why who is in charge?  I sort of fell off the calendar and off the rails. 

At the center of this swirling mass, this fluffernutter jar of dates and fates, was me. I was standing still at the eye of the storm, the tornado of my treatment. I was quietly wondering: does anyone remember where I am? I knew every every every single thing that had happened and every every every single thing that still needed to happen. I felt that my plan had been erased or had blown away off of the desk.

I already knew something but I learned it again: you must be your own advocate when you're going through the shit. There is no magic staff of people that are managing my case, or my cancer, or my body. The pretty pictures on the pretty website pages of the pretty people in the pretty white coats are stock photos, even when they're real people. They are not bad people. They are busy people. And only I am in charge of me. It is the staff of me, and I have restarted this case.

Tomorrow I go to Seton Northwest Hospital for a CAT scan. A friend jokingly said that this is when you get a hold of a kitty cat while it lays on your chest and purrs. I would like to order a tabby for this particular section of treatment. But no, this is not the type of CAT scan I will be getting tomorrow. 

Tomorrow my entire body will be inserted into a huge white tube that will measure the topography of my left chest - which is called the radiotherapy field. I am to be converted into a field. Someone will map me, and mark me, so that some other machine in some other office in some other part of town on some other day can direct beams of light to enter and crisscross inside my breast. Apparently when the beams crisscross each other, like when Darth Vader's saber hits Luke Skywalker's saber, the radiation is at its most intense. The beams' intent? To kill.

The thing that is so very weird about all of this cancer therapy business, is that you can read up on it, and even talk to a doctor about it till you're blue in the face, but you still don't really get exactly what's happening until you do it. So I don't really know about tomorrow. Everything I've read says that they use the CAT scan so that they can "very accurately aim the radiation beams at the tumor site." However, what the fuck? 

WHAT TUMOR SITE????!!! 

The dadaism that is my life.

I've already had four surgeries and six rounds of chemical warfare. Friends of mine that it had double mastectomy still get radiation. 

What in the hell are they going to radiate? How can there be anything at which to aim these magical beams of light if the cancer is gone? And didn't you tell me that it was gone? Didn't you cut it out? Didn't you cut it out again? Didn't you cut it out again again? Didn't you cut it out again again again? Didn't you poison it out with poison? Didn't you? Did you?

This is such a basic question that even a five-year-old could ask it. And I think I have asked it, but yet, it's such a complex question that every time I ask, the answer whirls away in a vapor of smoke and I either can't remember it or I don't actually get an answer. Maybe it's a political question?

There is something very odd, almost dreamy, about this whole cancer process. It almost feels like a scam, a rip off, a mystery, a front, a commercial. For what?  For modernism. Who is the audience?

And what exactly is radiation? We like to use the euphemisms of: beams of light, cancer curing radiation, crisscrossing laser beams, painless nothing! Why it's a bunch of painless nothing you silly girl! Don't worry about it! What "radiation" really is, is high intensity x-rays. You know those x-rays that are kinda mostly outlawed because they're bad for you? Those. 

What is an x-ray?

1. 1.

   electromagnetic radiation of high energy and very short wavelength (between ultraviolet light and gamma rays) that is able to pass through many materials opaque to light. (Online Dictionary)

In 1895 this dude named Wilhelm Roentgen was fooling around with electricity and gas in glass tubes and discovered the x-ray. He probably dropped dead from doing this. I've read and read and read about this, and watched many science shows, but I confess I still don't understand it very well. It's something like this: every atom (Adam?) has a nucleus around which electrons swirl, like planets around the sun, and like suns in a galaxy, and like the galaxies in our universe. After all everything is the same in this universe. (Uni = one, + ver = truth). Okay so imagine the electrons spinning merrily in their orbit around the nucleus of an atom. They each have their own orbit at some specific height above the nucleus, kind of like an airplane, say, flight 779 maybe cruises above the earth's surface at a cool 35,000 feet, while the flight attendants serve first class a cocktail. Other flights are cruising at 42,000 feet or 28,000 feet or 31,000 feet. This is good, because they don't generally run into each other this way. The electrons politely stay in their orbits also. And then boom! Something knocks an electron up to a higher altitude or down to a lower altitude. When this occurs a photon of light, OR, an x-ray photon, is released. 

This is where I get very confused. I'm not exactly sure what the thing is, the "something" is that causes this to occur. I think something or someone shoots other electrons at the atoms in question? Boy that sounds pretty stupid. I don't think you can go to the store and buy a box of electrons and put them in a gun and shoot them at other electrons that are merrily whizzing around and around atomic orbits. Clearly I don't have a firm grasp on this. Which is why I have a radiological oncologist to manage this for me. However, my curiosity bothers me so much so about things like this that I cannot sleep at night. Which is one of the reasons that I have a crush on Neil Degrasse Tyson, but I digress… 

I will endeavor to understand this more clearly.  Doctors kindly tend to talk to us in extremely babyish terms so as not to scare us, but that scares me.

Also, over time, radiation causes what is extremely technically and sophisticatedly known as "radiation sickness" – otherwise known as: it can kill you. Something to do with ions.

So tomorrow I shall embark at the radiation station and start my journey down section three of my four section treatment. I am to have 20 sessions of radiation, lasting about 20 minutes each, once a day, same time every day, on workdays, Monday through Friday, starting next Monday, April 21. I think.

From "Hinge Picture" by Susan Howe:

Light of our dark is the fruit of my womb

or night falling through the reign of splashes   

Liquid light that bathes the landscape in my figure   

Clairvoyant Ireland

eras and eras encircled by sea

the barrows of my ancestors have spilled their bones   

across the singing ear in hear or shell   

as wreck or wrack may be in daring   

There were giants on the earth in those days   

feasts then on hill and fort

All night the borders of my bed

carve paths across my face

and I always forget to leave my address   

frightened by the way that midnight

grips my palm and tells me that my lines   

are slipping out of question

4 (or 4 million) things I've learned about the body of a breast cancer patient

Let's see, I started this journey, if we wish to use journey as a metaphor – of stupid breast-cancer way back in August of last year. It kind of seems like August is coming up again pretty soon to me. Time is both slowing down and speeding up. I need to know what year it is anymore. Anyway I've learned a lot on this decommissioned train car with no drink or food service, no trans Siberian plush nest, no bell boy, no padded velvet booth, no high tea service, and as for the alcohol, you have to get it yourself. The service stinks.

But, I'm a lifelong learner, and I have managed to learn a few things about the body, specifically the body of the patient, and the very bizarre things that it undergoes when those 70 trillion atoms that make up a body get diagnosed with a thing we know as cancer:

1. Surgery schmurgery as long as it's a lumpectomy.

Breast cancer lumpectomy surgery is not really that big of a deal. Even four surgeries has not been a big deal to me. I've had my left breast sliced into by a surgeon, who then parted the skin, then the fatty tissue, and then wormed around in between muscles and fibers and fascia and milk ducts with sharp sharper sharpest shiny steel pokey things, and scooped out slimy yellow glistening fat, black tumor cells and other mysterious goopy things (you like my medical terminology?), and lots and lots and lots of blood. I think she put stitches inside me and I know she glued the outside of my breast with some super glue. It was gnarly. And yet, not terribly painful. 

Rather amazing.

After the first surgery I was a little bit sore, and enjoyed dutifully taking my allotted pain pills. But I have to admit surgeries two, three, and four, didn't really hurt that much. The pain pills were window dressing. When she cut me open last Tuesday for surgery number four she found so much scar tissue from the previous three times that she said she had to "chop it up a bit." Tartar. The next day or so I was a little bit sore but I think it was mostly just the idea of someone slicing up the hard rubbery scar tissue inside my breast that made me think I was sore. To this – I don't know? Is pain mental? I know it's not just physical, it's partly mental. Emotional. 

Today, one week out, it doesn't even seem like I had surgery ever. It seems like a dream from something from years ago. Maybe THAT'S mental. Emotional? 

I know that having the body cut open can be much worse be worse than my experience with a simple breast lumpectomy, but the boob isn't really all that functional is it? I mean other than for feeding babies and bothering testosteroney people. I added up all the months that I nursed, and I think I nursed a baby for over 33 months of my life. Fat lot of good that did preventing me from getting breast cancer.

Not trying to diminish the pain of many breast surgeries, like a radical mastectomy, or having a very difficult lumpectomy with the lump way back against the chest or right under the nipple or near the skin - or having it done with a bunch of lymph nodes taken out of the same time. All of those can be much more painful than mine was. For me it was: Slice open the door on the left side of the mountain, reach in and take out a diamond and then close the door and seal it again. Did I say diamond? I meant a lump of poison. 

2. We are as hairy as apes.

You have 5 million holes in your body, at the bottom of each hole is a baby hair follicle squirting out a little hair. Most of these are very fine and clear so you don't really notice them too much. You are Swiss cheesed with hair holes.

"Per square centimeter, human skin has as many hair follicles as that of the other great apes," notes The Economist. "The difference," really, isn't in the number of hairs, but rather "in the fineness of the hair that grows from those follicles."

Said an article.

Why did we evolve that much hair? Well according to this article, it's to help us to check the presence of bedbugs. If you're curious, read away: 

http://m.theweek.com/article/index/222584/detecting-bugs-why-humans-have-body-hair

Apparently the human is a furball. Your skin is a farm, a forest, an orchard of hair trees. You may not notice this about yourself until all of the trees timber and you feel smooth as a piece of alabaster stone, I say is if I have any idea what a piece of alabaster stone feels like, but it seemed like something that would feel really smooth and beautiful. Yes, smooth - but you feel the opposite of beautiful. 

The whole hair falling out, and coming back thing is not nice, fair, or evenly spaced out. Kind of like the restaurant service in Japan. When you go out to dinner in Japan, let's say in a large group like with a few families at a big fancy restaurant in Tokyo in 1985, your food. drinks, salad, appetizers blah blah blah, come out as ordered… I mean everybody gets whatever they ordered  right? Right. However, the waiters bring out the food whenever they feel like it to whoever they feel like bringing it out, in no particular order. At least no order that we could ever ascertain. For example my dad might get a big bowl of sukiyaki beef. 10 minutes later I would get a salad. Mom got a pot of tea. I didn't get anything to drink but was served some soup. Annabelle got some bread. 20 minutes later Jim would receive ton katsu. We ate together in the sense that we were at a table together, but we did not eat together chronologically. The chronology was lost in translation. This happened in every restaurant every day and we were always confused. This is sort of like how chemo-killed hair departs and comes back on your body. 

For a while I seemed to lose all my hair EXCEPT my eyelashes. People exclaimed "oh wow you have your eyelashes, you're so lucky!" I would bat them coquettishly and smile to myself and think Ha ha ha, at least I get to keep my eyelashes and wear mascara! Surely that will keep anyone from thinking I have cancer. 

Well, now that the hair all over the rest of my body is coming back, and my head isn't completely bald (although my eggy appearance doesn't stop people from saying to each other once I walk sort of out of earshot "oh my gosh does your mom has cancer or something!?") my eyelashes decided to jump ship. All but one of them fell out, the one remaining one sticking up straight from the middle of my left eye like a freakish acid trip windshield wiper.

3. Eyelashes don't grow in a thin even line like eyeliner or fake lashes.

There is not a single line of eyelashes that are planted like telephone poles in a gentle arc along the top and bottom lid of your eye. That is not true! In fact, there is a small forest of them, hundreds and hundreds of them randomly sprinkled about, to pop out little tiny pores all over the top and bottom of your eyelids. It looks like a dirt road or something. How do I know this? Because now, finally, my glacially moving eyelashes are starting to sprout. Let me tell you they grow very very slowly. Here is my cornrow of tiny spider leg starting to sprout in all directions:

(This is super close-up, they are naked to the human eye pretty much right now.)

4. The part of your body that cancer hurts the most is your mind.

Oh yes Virginia, the mind is the same thing as the body, and the worst part of this entire disease is the insidious mind warp that this label of "cancer" inflicts upon the labeled. Once you hear that you have been diagnosed with cancer you flip the freak out. It's like you jumped on a trampoline and jumped and jumped and jumped and then went into orbit and you're spinning over and over and over again and you can never land again. I still spinning. Sometimes I think I'm okay but then I realize that I've got this underlying anxiety that's messing with my sleep my diet my my mood. Or! Maybe what the diagnosis of cancer does is take away all of your scaffolding to show the real you, the scared shitless baby that you really are. Maybe that's it. Anyway what I've learned is the worst of this (so far and no don't test me) is infliction upon the mind.

WHAT IS THE LATEST FINAL PLAN?

Well, the next logical step will be radiation. I am still waiting for someone in the radiation department of radiation to telephone me and schedule my radiation planning session for radiation. Radiation is on my mind. And maybe no one else's?

Friends of mine have just finished it, with varying experiences, of course.  A few have said that they wished that the doctors wouldn't downplay it so much because they have burned and painful skin and that radiation is kind of terrible. 

So I'm compartmentalizing this information, and I have stopped looking at pictures online of radiated fried breasts. I stopped this after looking for 67 seconds at photographs of dark red, and even black, split open ulcerating oozing bloody burned looking breast skin. I know the photographs on the Internet can be exaggerated or only show the worst or the best of something. I don't need a lecture (you know who you are) about not looking up stuff online. I challenge anyone to be diagnosed with a fatal disease and never ever read anything about it on a vast and free network of all information practically ever written about it that you can access with a touch of a finger. Try it.

I also read an interesting article by radiological oncologist that talked about how radiation doesn't actually burn the skin, what it does is inhibit the skin from being able to regenerate itself. So he said that what you see when you see the red and damaged skin is not technically a "burn," but rather it is "missing skin." Huh? I don't get it at all, but I will forage further into the forest of radiation (20 sessions) once I start down that journey, which should start in about two weeks. Maybe one week. I don't know since I'm sitting here by my telephone...

Hello, hello, baby
You called, I can't hear a thing
I have got no service
In the club, you see, see

Wha-Wha-What did you say?
Oh, you're breaking up on me
Sorry, I cannot hear you
I'm kinda busy

K-kinda busy
K-kinda busy
Sorry, I cannot hear you, I'm kinda busy

Just a second
It's my favorite song they're gonna play
And I cannot text you with a drink in my hand, eh
You should've made some plans with me
You knew that I was free
And now you wont stop calling me
I'm kinda busy

--- Lady Gaga