Arimidex fails - DD back to the drawing board

My first ever cancer setback came in the form of finding out there was too much cancer to remove in my surgery. Fresh from this disappointment after a few months on trial drug Arimidex we had to accept that it was failing. It was  around August 2016 that lesions had appeared in my chest and I was hospitalised weekly with bowel obstructions from cancer blocking my bowels. It came to a head when my kidneys were blocked on a trip to Uluru with my parents and I was admitted to Alice Springs hospital, vomiting uncontrollably. I was hooked up to fentanyl overnight and monitored plus had a CT scan which showed that my kidneys were blocked and I would need kidney stents.

Uluru

Uluru was a stunning place, but I was wracked with illness and in pain most of the time, taking away from time with my family. I was also heartsick over my breakup that was in the works and inching closer. I knew this couldn't be what successful treatment looked like.

Once it was official that Arimidex was a no go it was decided that I would go back on chemo - Carboplatin and Caelyx, 6 rounds, which became 9 rounds followed by indefinite Caelyx. I would keep my hair which vain me loved and I looked anxiously forward to seeing if chemo would work and buy me more time. It has worked so far, and now after my 9th round of Carbo knocked me around causing nausea fatigue and vomiting I am just on Caelyx. My CA125 (cancer marker) has spiked, but that might just be an anomaly fingers crossed. My chest lesions feel the same size so I am optimistic that this is the case. Whats next? If Caelyx fails me we are trying an immuno trial but wont move on unless Caelyx fails to get as much out each treatment as possible. Such is the life of shopping for treatments when you have advanced, incurable metastatic cancer, it involves a lot of uncertainty and trust in your oncologist. 

The breakup, or the Lemonade Beyonce style bust up as it came to be known

Ah this one I'm finally ready to right about without getting a baseball bat and smashing some fire hydrants in a fierce yellow ensemble. I always joked to Ethan that should he cross me, I would be like a dog with a bone, like a stereotypical scorned Latina from a telanovella. I would fuck his shit up basically. I kept my word, and it was only when he called me to tell me the police were on their way to my house because I'd committed cybercrime by digitally locking him out of every account he had online including his work email and I was moments away from remotely bricking his phone that I felt it was time to stop and focus on sadness instead of the vengeance that consumed me like the fire of a thousand suns. That actually happened. What can I say, I have a flair for the dramatic and I'm good with computers. In high school I used to hack the URLs of the guys I was dating's Myspaces who had their comments hidden to catch them making plans with other girls and bail on them before they bailed on me, so I was no stranger to techology assisting me with dating woes.

My breakup aesthetic. I am theBeyonce of digitally locking you out of your accounts, hear me roar and click.

Backtracking backtracking, where were we? It was decided that me and my partner would move out of our Surry Hills one bedroom and find a place in Wollongong - little did I know he was just smiling and nodding, secretly planning to stage a coup where he would hole up in his parents home and slowly phase me out of his life. I'm not sure to this day if even he knew that he was doing it at that stage. We had been together 7 years and I would have walked over hot coals for him. Had our situations been reversed I would have gone to the end of the earth for him and never left his side. I thought we were rock solid, ignoring the ways that he was slowly starting to turn on me - I couldn't meet his old fashioned expectations of a woman's place in the home as cleaner and cook if I was sick, and he had already before I got sick started to make it known to me that I was woefully deficient in these areas despite working equal hours to him and wanting shared duties. He went against my advice and told everyone he encountered about our situation, starting to become addicted to the attention it provided. Meanwhile he slowly stopped attending the hospital and started using the time he took off work that was meant to be spent at my bedside playing golf with friends who didn't work weekdays. He said that my parents didn't like him because of his lack of visitation so he wouldn't step foot in my house because he didn't want to wear their scrutiny. I was desperate for his love and support and took what scraps I could get. Things were going to come to a head. It was during my holiday to Bali that he broke the news to me that we weren't living together anymore as he didn't want to have to 'care for me'. He refused to sign the lease on the place my friends and family had inspected and put our name down for. I sobbed hysterically, spooned my girlfriend Negs for an hour then dragged myself out of the house high on Valium to a beautiful waterfall as we had a tour booked for that day. As I let the waterfall wash over my skin and dodged the pitying glances of the girls I'd met on the trip who saw the breakup unfolding I pondered the beginning of the end. It was a very healing day for my soul visiting temples and waterfalls that day and I'm so glad I went instead of staying home and crying. If cancer couldn't keep me down no way would Ethan not wanting to move into the beautiful Wollongong balinese style 2 bedroom villa we were minutes away from signing the lease on ruin me.

There is so much happening in my soul and mind that a picture can't capture here. I'm at my rock bottom but I'm ready to climb back up.

I begged Ethan to come on my 'Dream to Live for', which was a free holiday to Noosa funded by a charity for patients with metastatic cancer. He only came after I sobbed hysterically and begged for days. He was distant the whole trip and I knew this was the last of days. I'd basically chosen for my 'Dream' to be to experience the last days of feeling any semblance of love. I had bought myself my last days with him to hold close to my heart forever when I was lonely and alone. It didn't feel like I thought it would.

Me on my Dream to Live For

 I don't doubt that he suffered mentally and I don't want to get points for painting him as a villain. All I know is he slowly pulled away until I went to reach for where he had been and he wasn't answering my calls and was uncontactable. He left the state for work and I didn't know where he was while I laid in a hospital bed after a complication put me in Emergency and sobbed. My oncologist had had enough. 'He needs to go' was the chorus of my medical team as the angst was causing me constant bowel obstructions combined with my experimental clinical trial of wonderdrug Arimidex failing to work on my cancer. A growth in my chest had appeared and my bowels were full of cancer stopping my food from progressing. One night I was as rushed to emergency as the cancer had spread and was blocking my kidneys. Uretic stents were installed in my bladder and kidney, beginning my experience with what would become the bane of my existence needing constant replacement and suffering repeated infections. 

I called ethan 30 times and the phone rang out. I could see he was on Facebook on his phone, ignoring my calls. My heart ached like it was shredded. This was worse pain than anything I had endured. I made a decision to put a post on my Instagram revealing his cold indifference to me, because the pain being contained just to me made me feel like I was going to explode. I chose an image from Beyonce's lemonade, as it felt appropriate and wrote an account of all that was happening, then hit share. To this day I don't know if this was wise, but I got the sick enjoyment of a Beyoncé lemonade style moment and there is something cathartic in that. People's shock and outrage at who had portrayed the image of the doting boyfriend poured in - it was crazy how fast and cold the reaction was. He had been telling people updates on my condition, yet he hadn't seen me or talked to me in a week.  One of the worst parts was when one of his friends wrote on my post and called me a liar, attacking me and saying that I made the while thing up to get attention. Why would anyone with cancer drive their partner away if they were supportive? It was so cruel my mind reeled. I wanted nothing more than Ethan's love back, but I had to accept that it was long gone for my own health, and this guy could believe whatever he wanted. I'd lived the lonely nights and days and I knew the truth. 

 I left hospital and went home. A friend texted me and my blood ran cold - 'I thought it was weird when I saw him on Tinder'. My hands started shaking. I knew his password for Facebook and accessed it immediately, playing at amateur hacker like my Myspace days of old. There were tons of messages to girls he had been talking to in the last week that he met on the app Tinder and one he had met in a club on a night out with his mates. He said he was single and there was no mention of his cancerous girlfriend languishing in hospital. He told the girls he was looking for a 'nice girl'. I nearly vomited. Instead I individually contacted every girl and filled them in so he couldn't spread the poison to their lives then shared a screenshot, obscuring the girls names as it wasn't their fault, completing my Beyoncé style revenge. He called immediately, furiously telling me to get out of his accounts and take the slander down. 'What have you done?' he repeatedly yelled at me. Suddenly he was contactable! Hurrah! And so began the end. I took the posts down and the anger turned to sadness, a deep bone aching sadness that would colour many therapy sessions and occasionally bring me to my knees in the lonely months to come.

We only saw each other twice again after that in a beach car park as he wouldn't meet me in our homes. I was so sick that the last thing I wanted to do was hang around a car park to pick over the carrion bones of what was my great love. I was at rock bottom, a place I needed to go to to begin to pick myself up. I still feel a warmth in the soul when I see a picture of his once loved face, and I'm sad to see that his life hasn't gone as well as i'd hoped since. I don't want him to be unhappy. But hopefully that warmth will one day become indifference, to protect my heart. I realised I needed a few things - my new dog to love and to love me no matter what and to move back to Sydney. Wollongong wasn't where I would live if I hadn't gotten sick and I was going to fight for the life I was wanted tooth and nail even if everyone else thought moving into a sharehouse in Sydney was crazy. I'm sure he disagrees with aspects of my story and the mental toll it all took on him and has a completely different account, but all I know is what I experienced of it, and the pain and loneliness of those months and that's the only side of the story I can tell.

DDs and Discount Balayage - My Appearance and Cancer

There was a strange sense of anticipation the weekend before I met the specialists who would become the sun and moon that I would rotate around, Professor Friedlander, the grouchy but caring oncologist and Professor Hacker, the gentle, caring surgeon. My all star team there to save my life. Professor Hacker was so sweet that when I meet Friedlander or 'The Prof' as he is known at the womens I cried afterwards saying 'he was ice cold he doesn't care about my case'. This was completely untrue and was just my nerves and anxiety coming to a head. I was to begin chemo straight away. I had that morning bought a deal from my hair salon on cut and colour that would have saved me a lot of money and had to ask 'wait does this mean I lose my hair?' the answer was yes of course and the refund was prompt. I had to cancel my beloved gym membership as I was unsure of whether I could still handle the pace as well as my laser appointments and so began prepping the strange new life post cancer.

I was so scared of the chemo room and had a big cry my first few times in there. It is a room with recliner chairs all around the edges, where the nurses buzz around a big table in the middle, flitting from patient to patient. I met the eccentric nun full of advice on chemo and dog rearing, whose time was coming to an end, Rose, an elderly lad who would die a few months later and a cast of other female characters may of whom I still encounter today. I was comforted by the fact that there was another young girl getting treatment, albeit for a different cancer. I had discovered that I had low grade serous epithelial ovarian cancer. What this meant wasn't a lot at that stage but it was different from her more aggressive high grade cancer that responded better to chemo than mine. Mine was the slow lumbering beast of cancers where hers was the fast spreading bushfire.

Skinny little bald me

After Christmas I started to lose weight, buying all new clothes for my tiny new frame. It was like dressing a barbie doll, all the clothes that used to suit my busty frame didn't work any more and I looked to intagram models to see what skinny people wore, having never been skinny myself.  I'd spent my teens being a curvy, fiery little babe (you're allowed to say that about yourself when you lose your body, sorry bout it). I had a rig. Firm, large breasts, a curved butt and just my tummy that bloated a little in the way that I managed with gym to never let get out of control. But did I appreciate it at the time? Hell no. I was obsessed with weight loss my whole youth. Not once did I stop to be thankful for my lush bounty. Now I'd give my left hand for my old body back. Maybe not..maybe..I don't know if the limits of my vanity stretch that far but I'd hate to test it. All my weight loss dreams I'd spent my teens and twenties obsessing over were coming true and all I wanted was old curvy me back.

The rig at its peak, such curves many tone such tan.

My boobs disappeared as did my generous curves as chemo had its way with my appetite and nausea ensued. My hair went after about 3 weeks just as predicted. The night before it went my mum was brushing it in bed and I revelled in what would probably be the last time experiencing someone brushing my hair for a good while. The next morning it came out in handfuls and what remained on my head stung like sheets of metal in my scalp. I called a neighbour who is a hairdresser and together with my loving Dalmatian rested in my lap, knowing I needed her we shaved the lot. I felt great.

Me post shave feeling relieved.

I looked in the mirror and a badass stared back. I looked fierce and strong and I was so proud I hadn't let it fall out and had taken charge. Hair had no power over me! I then learnt to embrace the headscarf more so than the itchy hot wig (it was summer) and every day would layer my face with Ella bache tinted zinc to protect my skin and give me come color then would chuck on a turban from louvelle shower and turban wear, a great Australian company making pre tied turbans. I also learnt to tie a scarf prettily and thanked myself for buying some faux Hermes scarves in China the year before on a holiday, not knowing I'd need them. I then signed up for the cancer rite of passage - Look Good Feel Better, a cancer makeup masterclass for free. Little did I know how closely I would come to work with the organisation.

The day I went into the Pitt at David jones for the LGFB class I was in a state of dread. It would be all old ladies and I didn't belong there. I despaired. I wanted to come to the city to work not learn to draw on eyebrows. What followed was an absolute delight and I found myself reluctantly enjoying myself. I signed up to provide answers to Andy questions they had about the experience for their marketing materials which lead to 2 magazine articles online, a press speech, a tv spot and a speech at a fashion event in front of hundreds about LGFB and my experience. It was so invaluable to my confidence and made me feel like the old me doing something I was good at and for a cause I cared passionately about. I wanted to do right by such an inspiring charity. Who knows what the future holds but should they need me, LGFB always has an advocate here.

Home for the weekend to process the unimaginable

My grandmother was so very very sad. No grandparent should see their grandchild struck down in their prime. The thought of having to passively watch me go through this kills her as she is too elderly to be of active help apart from as my supporter and cheerleader. Little does she know how invaluable that role is. She showed her love by making me a christmas dinner a month before christmas. I could taste the love. She is my spirit person - I have never felt a deeper connection to anyone than I do my grandmother and I am absolutely cut from her cloth. We share the same views and since I've gotten sick I've become even more like her, ready to espouse the perils of buying a dog without thinking it through at the drop of a hat, monologue always ready and cantankerously pushing my weight around the hospital, just like my dear old Nanna, an ex glamorous HR exec for the original Harvey Norman who used to gad about in furs and pearls in her glorious post divorce years and now was just as noble in her robe and slippers. 

This lunch was as delightful as a degustation to our weary souls. We were all joyous as if this wasn't all happening and it felt like bonus christmas. I was stoked. I pigged out on curried eggs around my bloaty stomach and delicious potato salad and was numb to all that I'd just heard.

A feed for the last of days

Me and my nanna 

 My friends were in shock. Flowers poured in from friends family friends and the community and people displayed a kindness I had never known them to be capable of. The first time I had to tell someone was when I ran into an acquaintance my age in my home town where I grew up and she asked how I was. I shakily burst into tears as I admitted things weren't well and I had cancer. The poor girl must have been horrified at the outburst but I was on shaky new ground and I hadn't yet learnt to navigate it as I now can, putting others at ease with the perfect tone of lighthearted humour and calm.

My loyal dog knew something wasn't right. I'm numb here and reeling.

My close group of girlfriends was hit so personally. This wasn't happening to one of us it was happening to all of us. Their mothers grieved for me, having watched me grow up. A close friend I'd grown apart from sent stilted, well mannered condolences as is proper to do. Some people shied away. I can't blame them. When I was in high school a close friends brother died and my first brush with death scared me so much I fell back on ' I don't know what to say' and avoided her. I now know it doesn't matter what you say you just need to be there, but I have been in the shoes of someone who dealt badly with these situations and I am not the one to hold a grudge or condemn them for it. It does mean that they aren't now still in that golden place reserved for the 'ones that were there' of lifetime soul deep friends, but I also would never judge them.  Most people went above and beyond, and for that I am forever grateful. For the most part I spent the weekend with family in quiet contemplation of the mountain I was to climb.

A Damsel in Distress with DDs Limped into a Doctors Office...

It began in my twenties with a persistent bloat. I got all the tests I could done to identify why it looked like i'd eaten a bowling bowl and the verdict was IBS after exhaustive tests ending in a colonoscopy. A doctor proudly stated 'your intestines are just filled with shit'. Wrong, wrong, wrong, mate, but how was I to know? I went on a low FODMAP diet and dressed around my constantly distended, sometimes painful stomach punctuated by crippling episodes of reflux that kept me up all night.

Then, at the age of 25 after starting my eagerly awaited new job at tech company Atlassian, where I felt I finally had the work life balance I'd craved working at my high stress consulting job for two years since uni I felt a persistent pain in my left hip. Obsessive Googling in the wee dark hours of pain revealed it must be Sciatica and I made my first mistake - going to an inexperienced doctor near my home as I was too tired to venture to my female health specialist. Then, a Bowen therapist, Chyro and Physio all had a crack at fixing the pain over the course of a few months with no results, just frustration lack of sleep and tears.

One day my stomach suddenly bloated to become a massive rock hard mass in front of me. More than bowling bowl stomach- double bowling bowl. Something was very very wrong and I was lucky I had gone to work so the nearest doctor was my extremely experienced female health specialist, Mira. She knew instantly something wasn't right and sent me for an immediate X-ray, which I hobbled towards a few blocks away.

“They saw shadow on the scan and for the first time, but not the last, I was pulled in to the side rooms reserved for bad news scans”

I vividly remember leaning on a traffic light, needing to vomit and despairing. I then proceeded to vomit profusely in the bathroom of the scan room. I was terrified. They saw shadow on the X-ray  and for the first time, but not the last, I was pulled in to the side rooms reserved for bad news scans. I was too scared to get an intravenous CT scan so I downed the disgusting oral liquid and it was sufficient to show that all was not well - more shadows. I was to go to the hospital emergency immediately and get a full CT scan to see what was afoot.

Very scared of the needle and not knowing that bigger dragons lurked under the surface

Hailing a cab on the street I felt like I was outside of my body. I called my partner at the time (hows the foreshadowing there), Ethan and said he had to meet me at St Vincent's Hospital. His presence calmed me and he helped me to overcome my lifetime held needle phobia by holding my hand, which contributed to why I was being diagnosed late as I'd avoided blood tests like the plague for years. Once I even ran out of a waiting room like a ghost in the night when they wanted to run a blood test. By the time I'd had an ultrasound and a CT scan we were told we were dealing with an ovarian mass. I assumed it would be polycystic ovaries and I was in the good company of several girlfriends I know with the condition. We all had no idea what was to come next. I cried because of the impact to my fertility but didn't even think the C word. A girl in a bed near me told me to 'calm down, it's not a big deal'. I've fantasised about what I would now say to her if I ever saw her again, but it would probably get me arrested. That was when the specialist told me that it looked like cancer and the whole situation turned on its head. The girl had left, so I couldn't revel in my histrionics being justified and then some. My parents needed to get there and things had gotten serious. It was a Friday so I couldn't see the specialist until the following Monday so I was sent home to reel and tell my loved ones the unthinkable.