Knowing when to stop

This has never been an easy concept for me.  As an art student knowing when to surrender the paintbrush was one of the most difficult things to master.  Knowing when a work is finished requires a certain amount of confidence and self assurance in ones abilities.  I believe a work is done when the artist becomes the audience and the work begins to speak for it self – in turn commanding it’s own presence.  Many times I have overworked an image which has revealed a tortured and clumsy work, ultimately a lack of knowing in oneself.  Jackson Pollack was once asked “How do you know when you are finished?” he replied with the question: “How do you know you are done making love?” I imagine the answer to be when you are satisfied.

This insatiable thirst for satisfaction has driven us in every pursuit of this 21St century and we are all a little desperate in our search for more.  More knowledge, more technology, more access, more entertainment, more connections, more money, more stuff and more searching for outward stimulus in the hope that we will one day be happy.  I’ve never been a fan of the word happy when searching to describe the ultimate state of being, I prefer to pursue the notion of being content.  The title of my site: my impermanent life, hopefully reflects on the way that I now choose to live my life based on the simple philosophy of impermanence. Perhaps a bitter pill to swallow if you are looking for happiness as the ultimate life goal.

Knowing when to stop has alluded me in other facets of my life.  In the good ol’ days (pre-cancer) my friends and I were usually the ones to stay out late and then continue to party the night away at someones house for a usually regrettably long amount of time.  Note to self, I never want to see the sun rise in heels again. This desire to keep having fun was of course the desire of the ego, a mere illusion.

Rarely did a night out end at a reasonable hour, except of course on this one occasion.  My friend and I, and for the sake of the story lets call this person Katherine, were on a Thelma and Louise kind of revenge-drinking mission. We were hell bent on having fun hard and drinking hard.  Why we were so determined is anyones guess however we had become pretty damn good at it.  We started our night at a seedy pub in Surry Hills woofing down tacos, tequila shots and margarita’s which were not my drinks of choice, however it seemed to fit the vibe of the place.  Our night had just begun and we were warming up.  The only thing to do was to keep on going this time harder and stronger than before.  We literally danced and sang our way to the next venue.  I vividly recall Katherine standing on the bench of a bus stop belting out the cheesy tune: Time Of My Life from Dirty Dancing, it was of course the perfect duet for two girls who wanted to live by this mantra.  We serenaded each other and the bemused passers by to our corny yet heart felt rendition, we sang from our hearts and we drew on all our music video knowledge to pull this off.  I thought I was on the stage of a broadway musical and I desperately revelled in the magic of drunken abandon.  We got to our next venue and entered the shady bar via the dimly lit alley way.  We headed to the bar without hesitation and ordered, “Two shots of whisky, bottom shelf please.”  We didn’t want the fancy french champagne that we had been exposed to, we wanted the nasty stuff- we were going to put hairs on our chests.  The bartender was somewhat amused by our antics, killing ourselves laughing and high fiving each other like we had made it into the fraternity of cheap ass drinkers.  I instinctively and somewhat impulsively decided that we were not going to be the only ones to have fun tonight so I ordered a round of whisky shots for the bar staff. One round, two rounds then three. We were on fire. Why things went south so quickly I really can’t be sure, although I do know that we were told that our brand of fun was no longer welcome and that we were to leave the bar.  We dutifully bowed our heads and did what we were good at, we moonwalked out of there. And what a fun way to exit a venue. It seems on this occasion that knowing when to stop had not been necessary as the decision had been made for us, we were no longer moonwalking, we were now crab walking our way back to our apartments.

Knowing when to stop this whole mess of a Breast Cancer diagnosis has also been met with similar difficulty.  Unfortunately some of the medical specialists treating me have used very emotive and coercive language when determining the best course of action for my condition.  I use the word unfortunate as this is not what I had been banking on, I have always been interested in the facts and the science. Having my Oncologist use fear as a way to get me to follow their chosen path of treatment has been very confusing for me.  The fear of  ‘not being able to see my children grow up’ is of course gut wrenching for any parent. Throwing this little aside comment in does not make for very scientific choices.  I have decided not to go ahead with Radiation Therapy even if my Doctor would ‘hit me on the head with a brick if I were their relative’.  The odds are thankfully stacked in my favour, I choose to focus on the 70% chance of cancer not coming back in 10 years rather than worrying about the 30% chance of recurrence.

Knowing when to stop has not been easy, howeverI have made my decision to cease treatment and am very content with the facts presented to me. I know that I am done and can now say that I am satisfied and willing to end this part of my treatment.

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Going Bald was the easy part

No more ridiculously expensive imported hair products, no more 80’s hair mousse, no more need for the GBH straightener, no more hair dye…no more hair.

Shaving my head was kinda cool. I felt edgy and like I had joined a hard core feminist movement that had moved on from burning bras. This was liberation at its finest. I felt freed. Truly freed. No longer defined by my unruly wild curly black hair, my hair had in a way defined me and become an identifier.  I was accustomed to standing out amongst the other school mums who were mainly straightened blond haired beauties, I was the wog chick at school pick up with mad hair who wasn’t wearing active wear.

Those who didn’t know I was going through chemotherapy would comment how they loved my new look, again probably a vain denial on my part as I thought I looked so damn good. I’m guessing the yellow skin and puffy face might have been a give away but I held my shiny head up high. I had a pretty edgy wardrobe already but I decided to amp it up even further to complete the I’m too cool for hair on my head look. Obviously I looked different, but I still maintained the vibrant matt hot pink and red lipstick colours that had become my trade mark over the years. It’s a Melbourne thing.

I had a night out with friends early on during chemotherapy and I remember bumping into a friend that I hadn’t seen for quite some time. She always effortlessly managed to have a glamorous look about her, anyway this particular night she didn’t have any make up on, her hair was tied back in a simple pony tale and was in active wear… So me being me, said “Ohh my god I didn’t recognise you at all, you look so different!”  She turned around to me and quite rightly said, “You didn’t recognise me, are you serious?”

Looking back on my baldness I was really hell bent on never wearing a wig or head scarf which of course I never did. For me I associated the head scarves and wigs as representing a sense of shame about what I was going through.  I didn’t ask for my breast to try to kill me, so I wasn’t going to cover up my current state of hairlessness.  Having a rebellious nature meant that I was not going to run with what I called the cancer look, I had made up my mind and I didn’t give a shit about being bald. I had a pretty unapologetic attitude about it and probably carried a little chip on my shoulder too.

I remember going to a Look Good Feel Better program which is charity run, they show women going through breast cancer how to apply make up, draw on eyebrows, tie a head scarf around your head so it looks like you have hair under it amongst other beauty tips. They pulled out a few wigs and I was asked to model a wig for the group.  Being the complete non conformist that I am I asked if I could model the worst wig on display- the nasty nylon pink wig. I did  not want to be part of a cover up, I wanted to put the sting in this operation and have some fun with a very un fun situation. The wigs are hot and itchy and my scalp was extremely painful and sensitive so a wig was not going to work for me anyway.  Please don’t get me wrong I don’t want to come across as a total party pooper, I think women should wear wigs if it makes them feel better about themselves.  I’m all for trying to look good and feel better in what feels like a mostly crap time.  I too drew on my eyebrows and used black eyeliner on my lids to compensate for missing eyelashes. I was just pissed off that not once during this group did any of the facilitators talk about how you don’t need to cover up to feel better. I wanted to hear that we all looked beautiful with our shiny bald heads. We were a group of young dynamic, creative and diverse individuals who just needed a little esteem boost, to be told that we should be proud of the way we look.  To be told to go easy on ourselves for our ongoing struggles and for our hair loss.  I wanted to tell every woman that they were stunning and beautiful just the way they were…. and I did.

I did go home with a huge stash of high end designer make up and skin care products donated by these luxury brands. I was such a pain in the arse, I even asked where the organic products were and the natural oils and moisturises. I wasn’t keen on the products that would poison me further.  A few days later and still on my high horse I got a call from a person in head office from the program, someone had suggested that I would be a great model for their advertising campaign. Unfortunately that woman had called the wrong person. I was not interested in being photographed in a wig to support women with breast cancer, I would only be part of their photo shoot if I could wear my own bald head. Lets just say that the conversation didn’t go so well, and I wasn’t offered a spot in the shoot.

Morphine PCA – Patient Controlled Analgesia

Every time I wake up in pain from surgery I still manage to behave like a greedy kid in a candy store. Pushing the PCA button is the only thing that I can focus on.  A PCA is basically morphine that is electronically controlled via an infusion pump intravenously.  The dose is predetermined by the doctor so the patient can not overdose, I figured I’d be in safe hands.   I’ve had a few surgeries now so waking up in recovery with that little hand held button is my version of a security blanket.  There is something to be said for the self administration of drugs although some things are best left unsaid.  By pushing the PCA you are immediately fast tracked out of the pain queue, bypass the call bell and do not have to wait for a nurse to turn up while your waiting in post surgery hellish pain.  Apparently Im quite amusing post surgery, or so my husband reminds me.  I’m reduced to a mess of high pitched sing song sentences interspersed with a few painful yelps.

When the PCA is ready to administer another dose a little green light illuminates and its a race for me to press it.  I hate pain and I mean hate it, I think I have extra sensitive nerve endings because I don’t seem to tolerate physical pain very well at all.  When it comes to emotional pain I’ve done a few rounds and have taken a few emotional beatings without so much as flinching.

I was all over that PCA button, I was at it for days.  The nurses would check in on me every few hours and ask if I had, wait for it… ‘opened my bowels’.  I wasn’t eating anything so this probably explained why my colon was sheepish.

My gorgeous nutritionist friend came to visit me armed with a jar of 48 hour bone broth infused with various bones and of course chicken feet, a organic kale green juice with ginger and turmeric and some other super duper foods.  I was high as a kite on my PCA and so happy to have a visitor that would listen to my dribble.  I started on the green juice and shortly after backed it up with the intense bone broth.  One thing is for sure morphine can make you nauseous and thats just what happened, I heaved violently and creatively redecorated room 803.  I was a mess, although not my first experience with messy.

I do remember a pre-cancer debaucherous night out when I somehow managed to spill red wine up my skirt and ended up with wine soaked knickers.  This was the same night that I was at an uber cool bar in Paddington, wearing a simple cotton dress with a long slit down the middle of the back.  In a moment of inebriated genius I snatched a black magic marker from the bar tenders hand, spun my dress around and drew on my rather relaxed stomach a very nice set of abs. I now had a rockin’ six pack.

The next morning I woke up with a throbbing head ache, no PCA and killer abs.

Note to self: Don’t drink and draw.  It took several showers to scrub that off.

Then I discovered Google Scholar

Admittedly it’s been about 20 years since I left University and haven’t really done any study or research since then.  I’m guessing that looking up how to bake an easy chocolate cake recipe on the internet isn’t exactly research.  Like most of us, we don’t talk Oncologist speak, its a completely different language that is full of huge words that sound to me mostly harsh and terminal.  Once I heard the words Grade 3 Invasive Ductal Carcinoma I knew that I was way out of my language league.  I had studied Fine Art at University and I was more used to discussing the exstistential elements of art and its context. Onco speak was so daunting and final, there is no room for contemplation or personal interpretation.

The day I discovered Google Scholar I got my game on.  The note pad was ready, the pencils were sharpened, the ginger and turmeric tea was at hand.  I was in my PJ’s and I was ready to kick some scholary arse. I found myself reading research paper after research paper trying desperately to interpret language that was beyond me. The funny thing is I managed in my own inept way to scour across papers and seemingly made some sense out of it all. It was more gut feeling than intellect. I spread myself around the sites like a greedy cookie monster. One site wasn’t enough, multiple pages and research articles opened all at once, cross checking info on my iPad and iPhone simultaneously. I needed more devices.

Knowledge was king and I was hungry for more.  Im not so sure I was ingesting the right amount of quality nutrients but I was getting something. This was junk food for the mind. I felt inspired and motivated. That was the day that I swore off sugar as an evil product made by huge multinationals who were out to make big bucks and poison us at the same time. I discovered articles on assassinated professors who had come close to simple cancer cures that couldn’t be patented, there was so much to read, the concept of cancer as a business was starting to seem very real to me. That is when I declared that I would stick to an alkaline diet. I was going to kill this fungus inside me, no more sugar, no more acid causing foods or drinks, I was going to be the king of my own domain and re set my path to healing.  I was knee deep in conspiracy theories, this was so much fun. I was on the edge of my sofa. Chemotherapy was going to kill me, surgery was going to spread the cancer further, radiation would give me new cancers, holy shit I was l wadding through a pool of hot steaming crap and I couldn’t see a way of getting out of it.

Anyone who knows me knows all too well that I’m a rebel at heart, I like to question, I don’t like being told what to do.  This was going to get interesting, I was ready to fight every oncologist and pummel them with my questions and theories, I was armed with little knowledge and god knows this can be most dangerous.

I took my note book with me to my Medical Oncologist appointment (the chemo doctor) and fired away.  Will the Chemotherapy cause new cancers? Will it damage my organs? Is this the worlds best practice for treatment? How many of your patients have declined treatments and what was there outcome? What is a hidden cancer? Do you know if the cancer has spread or are you guessing? Is it in my big toe as well as my breast? Why don’t we remove the cancerous breast first? I went on and on. Suffice to say that this $565 appointment wasn’t going too well.  The Doctor had her back up, I was that pain in the arse patient that thinks they know everything and was questioning her extensive knowledge, expertise and experience.  She was ‘patient’ at first but soon realised that I was resisting treatment and perhaps resisting the idea that me, yes me, had Breast Cancer.

Patient: adjective. Able to accept or tolerate delays, problems, or suffering without becoming annoyed or anxious. “be patient, your time will come” synonyms: forbearing, uncomplaining, tolerant, long-suffering, resigned, stoical.

I walked out of that appointment humming Bowie’s classic 1974 track:

Do do do do do do do do, Rebel rebel, you’ve torn your dress, rebel rebel your face is a mess

D DAY – Diagnosis Day and the nipple pickle.

It’s D DAY and I’m jumpy. Excitement isn’t the first thing that would rate highly on a feelings check but that is how I felt.  Its a different level of excitement, not the I just sat behind the wheel of a new car excitement, more of a bodily sensation. My limbs are uncontrollably jumpy, some nervous twitches and I’m blurting out sentences that sound so incredibly surreal and stupid.  I am very aware of my breathing, my heart heavy and strong, boomp boomp, boomp boomp. This was not the same waiting room outside the Principals office in 8th Grade this was much much worse. I was desperately trying to draw upon some kind of inner clairvoyance to give me a heads up, asking myself, so do I have cancer or not? Am I going to walk out of here unscathed or is my world going to implode?

My husband and I are finally called in, pleasantries are exchanged and the Oncologist gets down to business straight away.  Words, words, and more words.  This is taking way too long to explain were my first thoughts.  Okay, starting to feel very odd, a rush of heat and sweaty armpits.  Why is he going on and on?  He is talking so much. Bam, he says it, It’s a malignant tumour- You have Breast Cancer and we have to perform a lumpectomy next week and you will loose your nipple. Whoa, back up. Did you say loose the nipple?

Looking back now, boy did I cry over that nipple. A week after Diagnosis Day I celebrated my birthday lunch with girlfriends and at varying stages of drunken mess I’d let out sobs over the nipple cripple. I was so distressed about loosing that damn nipple, I cried my guts out and made some pretty loud sobbing sounds. It wasn’t all sadness and tears, there were plenty glasses of champagne, natural wine, I think I ate a plant, we hugged the waiter and I tried to get into the boot of my friends car as I thought it would be more fun to get to the next drinking venue. Luckily I have good friends who managed to talk me out of it. Yes I do have that photo of me in the boot, no I’m never up loading it.

Loosing the nipple brought back fond school memories of me throwing the pickle from my Big Mac above my head with careless abandon to watch it get stuck to the ceiling.  I couldn’t stop imagining my Oncologist doing the exact same thing with my nipple.

Getting rubbed up the wrong way.

When word got out to the wider community that I had Breast Cancer I began to develop a mild form of agoraphobia, it wasn’t so much that I was scared of leaving the house, I was more scared of bumping into people that I knew. Other people had become a constant reminder to myself of the impending uphill slog of surgeries, chemotherapy, radiation and more surgeries. Whoa this was more shit than I could stack.  I was trying to focus on one aspect of the treatment at a time, the questions and advice from well wishers was too confronting for me, I was having trouble digesting what felt like impending doom.

The kicker for me was the arm rub from well wishing acquaintances.  These were very lovely people in their own right, however I had never before crossed into the physical domain with these people. My instincts became very sharp, I could pick  out a potential arm rubber in a crowd, I could see them eye me off and then walk towards me with the same determination of killing a cockroach.  I just knew what was coming next.  The outstretched arm would be cocked ready to close in on my shoulder at any given moment… The arm rub a seemingly compassionate gesture, which of course it was would go on for what felt like forever to me.  I was so aware of being rubbed like a little sick dog that my brain couldn’t focus on much else. Words would become muffled, just the warm and unwanted touch of a stranger was at the forefront of my mind.

I used to cringe, first it was the “Ohh I heard about the news”, or worse I would have to endure the stories of So and So had breast cancer and she is now fine…blah blah blah.

In hindsight I now realise that these arm rubbers had the warmest intentions and were genuinely trying to connect with me.  I was just too scared to accept what was happening to me. Umm I’m pretty sure it seemed like a good idea at the time, however, I told someone that if they continued to rub my arm any harder a Genie would pop out of my arse.