Illness moving in
My body is a stranger.
This mutilated, dangerous, resilient and fragile body carries me.
Or do I carry it? I’m not really sure.
People have assumed that it was the diagnosis that was the hard pill.
“You have breast cancer.” On the phone with a doctor who doesn’t know what else to say.
I was a mother of a two-year-old, in the process of weaning him off breast milk.
I was told to stop immediately.
And then they poked and checked and injected and I fainted and still they continued.
They put me to sleep and took away my right breast.
That’s the pill I don’t want to swallow.
That it happened to me.
By now breast cancer is like a story someone invented in order to colonize my body.
But you know what? By now breast cancer is like a story someone invented in order to colonize my body. I became a project, an invisible killer was at loose somewhere in me. My body hiding the enemies, like an idiot unaware. Other people in white and sometimes in emerald green had knowledge about me. Words so new I needed a dictionary. And tissue paper. I became a fixture in new scenes or an actress playing a part in a play I had never ever read. The patient. Suddenly I was visible in the organized hierarchies of hospitals. I had a bed, a nurse and a treatment plan. And most of the time I was home with my family, playing my new role amongst the emotional storm that manifested in different ways. There was urgency and seriousness where my sadness and confusion met with faces that told me scientific data about the average survival rates. There was good news and bad. Would I live? I guess no one really knew.
Hair is the measure of distance: how far am I from cancer?
It is an illusion, an escape.
I went into this with long straight hair. Now I have a nearly shoulder-length bob with chemo curls. I have lived through everything in between. Every inch and curl analyzed and computed. Me escaping. Longing for what I was before. The day before my surgery I painted my nails orange for courage and had my hair cut and dyed into a beautiful blond bob. It was me not wanting to give in to ugly sterile hospital freak-out. It was me both trying to lie to myself about how scared I was and to maintain control by not losing beauty. Because sometimes beautiful things bring peace where chaos resides. I made a friend at the hair salon.
Soon came the day when I cut my hair with scissors. I was curious and wanted to embrace the loss rather than wait for it to sneak on me and my sadness. I cut my hair with blunt scissors and ate brunch in town. I felt light. Then two weeks after the first chemo my lover shaves my head. It was the day that it was supposed to fall out. I looked like a moon-faced zen meditation guru. I felt brave and strangely free.
I wore wigs. The sensible one I got from society and the Beyoncé one I ordered from the US.
I had more important things to worry about than being pretty. I wore bright colors and redecorated our home with fervour. People approached me in public places. What ever I was, I was more accessible now. Grannies wanted to chat with me on bus stops and men dared to joke with me in a queue to pay for groceries.
Lose hair, grow hair, shave, don’t shave, maintain
I had to grow my hair back from nothing.
It involved a million shades of self-betrayal, acceptance, ignorance, imagination and dreaming.
Losing my hair made me obsessed about hair. I made Pinterest boards. I set goals. Celebrity styles I could try on the way as the hair grew.
I looked like Furiosa.
I felt like a little girl lost.
I am a woman living in limbo. In aftermath. Death and fear and sorrow and love. The version of things where I should be thankful I am alive.
But I am a stranger.
So many disabilities and new hindrances define my day to day existence.
None of them are called cancer.
Breast cancer is just the beginning. A name that is misleading in its locality.
The aftermath is all over my body and my life. I will never be the same.
I have permanent lymphedema. It is a chronic illness that affects my right hand. The one I need to write and play with – to do my work. Lymphedema was caused in the mastectomy, where in addition to removing my right breast, my armpit was evacuated because of lymph nodes that had cancer cells in them.
This is an irreversible illness. To manage the swelling I have to wear compression sleeves and gloves everyday all the time. I suck at wearing mine. I may slowly (or quickly) be losing both dexterity and strength in this arm of mine if the swelling continues to grow. It already is huge and swollen every day.
I have just one breast since February 2014. And now I am in between surgeries for making me a two-breasted lady again. So for the time being I have one saggy breast-fed au naturel breast and a golf ball under my collar bone. The golf ball is the mastectomy side, where I now have an expander underneath the tight skin to stretch it enough for the silicone. My future is in silicone, but even then I’ll not be able to have a nipple so it’ll just be a kind-of-breast. Good enough with these cards.
In addition to these disabilities I take hormone blocking medication daily. I will be on this course between 2014-2024. That’s the plan. This is to stop the cancer from returning. To keep me alive. This medication is an afterthought, no one really knows about it and no one mentions it when you get diagnosed with breast cancer. Research results are just coming in about how long this medicine should be used. This part is what sucks the most. No, it really truly is. Because artificial menopause in your early thirties is hell. It is the sealing in the new construction of me, the one that stares back at me now looking like a stranger.
I struggle to appreciate that this shit is keeping me alive.
Because of the hormone blockers my body gathers fat like it has started a new hobby with true devotion. Within the last two years I have developed a round bum, hips and rolls of fat for a stomach. Every bit of me is larger and softer. And no amount of fasting and exercising seems to shake my body back into earlier shape. I sag. Doctors smile with sorrow or an attempt at empathy. Sometimes they cannot hide their boredom and the fact that they have heard these complaints before. I struggle to appreciate that this shit is keeping me alive.
Seeing the future (with two breasts)
I am waiting for my hair to grow long.
I am willing it to grown. I pull at the ends next to my chin now and measure.
Who will I be then? A white woman with long hair? Blond hair? Brown grayish hair? Natural hair? Straight hair? Curls from chemo? A woman with a child, a woman who has survived one bout of serious death-calling cancer. A woman with a beautiful man, a woman with rings. A woman with holes in her sweater. A woman who forgets to brush her hair. Who doesn’t brush it on purpose. Who braids uneven braids and thinks about smoking cigarettes even though she hasn’t for five years now. Even though cigarettes cause cancer.
It’s like the new breast that is in the works. Things that will make me whole. But not only will they make me whole they will make me beautiful ––I will be so beautiful it will hurt the eyes of onlookers. This time with my long hair and my adorable cleavage, do not expect the coyness and unawareness of a teenager or a woman in her twenties. I will be A W A R E as fuck. It is my right to flaunt and enjoy. That’s the plan. And of course you might ask what is holding me back right now? I am already a bomb. My wavy blond mane reaches to my chin revealing my neck and shoulders. Think a movie star from the 1950s or from the 2016 Oscars. Think anyone. I’ll strut next to them on a red carpet with ease. Because there is nothing like losing the goods to make you understand your beauty.
Now I no longer feel like my body CAN’T. It can and it will. And I’ll enjoy it in front of people and in my own home. I’ll dance, I’ll undress and talk about my features. My body used to be a source of shame for me. Now I’m proud.
My insides never caught on. Changes happened so fast. I would like to say that most of the time I feel attractive with one breast, with short hair and with no hair or with a wig. During chemo I felt like men were flirting with me more and people were talking to me more – I was swollen with a round cortisone face and dragging along extra six kilos. Still, there is a yearning to be the one I was before. Or at least to recognize a connection.
It’s the good medicine of learning to go with what I got: like just loving the ability to lift my arms, do a downward facing dog or run a little. It’s also about admitting that what I have is pretty and beautiful. It’s not just that though. It’s an arrogant self-reliant and fulfilled feeling of being alive, being beautiful, lovely, lovable, sexual and sensual.
It is a dream.
Most of the time I live in self-hatred.
In ugliness and not wanting to look at myself in the mirror. Because of unwanted hairs sprouting all over my face, legs and mid-area. Most of the time I feel either fat, ugly or too hairy or smelly. It is the mode of becoming that is so attractive in reconstructive surgery. A little and a lot of pain, sweating, dangerous operations, recuperating, heavy medication, wounds, more pain and visits to the doctors. Not eating this and that. Moving and sweating. Goals in the distance. At some point the hair will just have grown while I mind this transformation business.
And so the distance to the illness grows.
I look in the mirror and don’t always know who is looking back.
People don’t recognize me in the street.
No one has called me beautiful for some years now. At least I can’t remember.
Fear is ever present in my life now. It’s that dangerous unhinged old love that even I don’t want to haul along anymore. In May yet another one of my ‘pink sisters’ finds out that her breast cancer has returned and is in her lungs now. Another friend dies. Dead at 33. She lived with incurable breast cancer for four years. Fear moves back into my body. It makes rational thinking difficult. Do I have less oxygen in my lungs or am I just afraid? At the end of the month I have my own scare and sit in various hospitals again waiting for check-ups and results. In one hallway I wait to see a doctor who is an hour late and have ample time to think about writing my will. I also think about creativity. I am so full of words, melodies, the beauty of creating something out of nothing, out of pain, fear and memory and imagination. This time my pain is a false alarm. Everything is fine. For six hours I can breath without fear. I feel exalted.
It is too easy to push me over with fear
It is too easy to push me over with fear. I am the ricocheting feather I describe in one of my new songs. It doesn’t take much to derail me. I begin to hear the death bells ringing and develop anxiety over the trauma I will cause my child.
Turn it into something
I live on the edge of rain. That point where one side of the street is drenched in rain and the other side is still dry. How long can I exist in between?
Writing is doing the dirty work. The work that keeps me sane. It’s having to be brave and ugly and forgetting to do the duck face. Ultimately, the duck face and make-up face and all other kinds of paralyzed controlled faces are the most boring images of women there can be.
I am a fool with my hope.
I know there’s laughter where there is sorrow.
I am becoming a priestess of grief.
Making space and opportunity for others to cry and release their sadness and loss while I sing. How funny that I don’t know how to let loose my own grief. Not nearly enough.
Songs are the territory of my grief.