I may have incurable breast cancer that has taken residence inside me and relentlessly persists to take over my body and ultimately my life, forcing me into combat with ongoing treatments to buy time and maintain quality of life; but it cannot take the essence of who I am. It does not define me and it will never take my spirit, my heart nor my soul and it doesn't stand a chance at diminishing my determination to challenge it every day with bucket loads of inspiration in my life to do so combined with an abundance of gratitude for so many blessings. Without a cure I realistically know that my type of cancer is almost certainly going to deny me of growing old but I have come to realise that some people are old at 18 and some young at 90. Time is a concept that humans created. The only time that really counts is right here....right now and when love prevails life is wonderful and everything is absolutely okay exactly as it is #Loveyourmother #loveeachother
A Quick Snapshot
I was born in January 1966. It is the year 2020 and I am 54 years of age. In-spite of living with cancer I feel like I am truly "Living the Dream" and eternally blessed with a strong and happy heart. I still live to challenge incurable cancer - six years since diagnosis. I am defying the statistics. The majority of my cancer sisters and brothers, with the same cancer and diagnosis as mine, have long gone. I am one of the few lucky ones. I spent 24 years with my ex-husband. I have been divorced for over a decade. I am a mum and my greatest achievement in life is my son Jake. He is my everything and my strongest inspiration. He was born in 1995 and is an only child. He is a lawyer and enjoys his career immensely and has a well rounded life and a beautiful partner in Sienna who is a wonderful, respected and loved member of our family. They are both involved in many sporting pursuits and actively engaged with the community and fabulous examples of young ambassadors supporting charitable causes. I am the eldest of 3 girls and have a fabulous bond with my two sisters Tiffany and Simone. I have a half brother. My mother and father (Lilian and Terry Keogh) both enjoy good health and still live in the home I grew up in. I am a proud Aunt and Godmother and recently became a Great Aunt. I had the privilege of meeting my four grandparents (all now deceased) who helped shape me. I embarked on my working life the moment I completed my Higher School Certificate "HSC" in year 12 and graduated from senior school in 1983. My career has been very diversified and family and financial hardships have exposed me to many work experiences, life lessons and opportunities whereby I have, as part of the course, acquired insight, understanding and skills that have been transferable throughout my life. All that I am thankful for. My working life found me designing and selling kitchens; engaged in property development and property sales; working in office management, marketing and human resources amidst other things. I also enjoyed setting up and growing my own businesses with the most recent being Crofts Keogh Pty Ltd which I co-owned with Sharon Crofts. With a heavy heart, after ten wonderful and successful years, I retired completely from Crofts Keogh in late 2019 to make my health a priority given the progression of my disease. Laughter is my greatest weapon. From a young age I decided I would never drink alcohol nor coffee and was never enticed to smoke or explore other toxic vices which have ironically worked in my favour to combat cancer. I have always held a strong faith in God and a higher purpose. I have made many mistakes but strive to learn from them and often find myself repeating life lessons. I am high on life, fresh air and love. I trust the Universe immensely. I have wonderful friends from all walks of life and appreciate the connections I share with them and our differences. My cousins share my blood. I have lost people dear to me but know I will be joined with them when it's my time. I believe in the Divine Plan. My greatest evolvement has been induced by cancer. I am an independent single woman and very comfortable in my own skin. Bald and all! I have met some lovely men, over the past 10 years (post my divorce) and invested considerable time into exploring potential for a long term relationship which hasn't translated but has provided me with fabulous personal growth, experiences and memories. I am still open to partnering with that elusive special someone - if the dynamics are mutually right, if it presents and if I am granted the time on earth to do so. I am equally very content on my own and have a full life. I know many would describe me as a strong personality with high energy albeit cancer has slowed me down. I love to laugh including at myself and give myself many reasons to do the latter. I have a dog who is a king charles cavalier x cocker spaniel. His name is Calvie and he gives me joy I never imagined possible. I have always had pet dogs and still cannot fathom the unconditional love and loyalty they impart. What wonderful attributes they innately possess. I love to walk and to dance - particularly zumba and did both regularly with enormous energy to expend but have had to accept some limitations as my disease progresses. Music is my salvation and incredibly powerful in my life and my collection would be described as eclectic with artists of old and new. Mostly old! I enjoy being busy and thrive under pressure but I also enjoy complete stillness. I am a people watcher and very interested in human behaviour and yearn to know what makes people tick and what makes them happy. I have been managing depression (with treatment) most of my adult life and I can be honest about that. I derive some of my greatest pleasures out of the simplest things. I derive enormous pleasure if I can make even the smallest difference to enact change or enhance the life or well-being of another. I am personally moved by people and human spirit daily. I feel blessed to have been born in the "land of plenty" Australia in good health mentally (some may question that...ha ha) and physically with a home and loving family. That's a very awesome start to be given in life! I believe in the power of community and the language of love. The very fabric of me is made up of all my years of life gone by and I am thankful for every trial and tribulation, the adversity and the prosperity and even cancer - all of it....brings me "here" and right here is seriously GOOD! Every day is to be celebrated and if I had one wish - it would be world peace & equality!
My heritage is Irish and when I was diagnosed with cancer I was faced with a reality that, if my body wasn't responsive to treatments to slow down my cancer, my time could be very limited (initially I was faced with months) hence I immediately planned a trip, with my son, which encompassed travel to Ireland. Therein I felt an incredible affinity with the nucleus of the South of Ireland and in particular Tralee the largest town and capital of County Kerry in the south-west of Ireland. Tralee boasted a tranquility that overcame me immediately along with a very obvious thriving community making the best of its history, culture and landscape to feed its economy. I just loved the town's architecture with a well preserved mix of Victorian and Georgian buildings lining the main street in town. I found that the vast majority of people working in the shops, restaurants, bars and tourist sites were all locals which provided for a very authentic Emerald Isle experience for me. Tralee is just so unique being a rural location right by the sea that preserves its past culture and history like no other. It's beauty was breath-taking with dramatic landscapes and seascapes just minutes from town. We only had to drive five minutes out of town before we were surrounded by rolling farmland and undulating fields of green and open sea views. Everything felt so "down-to-earth" and it was so notably welcoming, charming and idyllic of the Irish countryside and the town had an exceptionally warm buzz. Interestingly Tralee is largely bypassed by tourists, apart from the week of its international "Rose of Tralee" festival in late August so I found it to be an incredible hidden treasure that was more engaged with the business of every day life vs a tourist trade and loved that it is only a two-hour drive from Cork where my ancestry was born. Whilst I was born and raised in Melbourne Australia, Tralee felt like home to me and I found myself fantasising about living there one day or at least going back or having some of my ashes scattered there when I take flight from this life on earth. The word "Tralee" ironically encompasses both my first and middle names thus Tralee has become an endearing denomination I have fondly identified with and feel innately connected to. Just off the Town Park, in Tralee, is St John's Church and therein I attended (with my papa) a very moving and emotional service and had the opportunity to give thanks to God and pray to him. Every prayer I prayed that day in Tralee, Ireland has been answered. That was in November 2014.
My motivation to create this website was three-fold. Firstly, because I feel compelled to share my story and gratitude hopeful that it may impart even the smallest inspiration to someone else fighting cancer. Secondly, creating a vehicle for fundraising initiatives and involvement towards a cure for cancer and care for so many living with the disease and lastly but certainly not least as part of a legacy to my son and family.
In June 2014, I was diagnosed with stage 4 breast cancer which had metastasised to my liver. I had never had cancer before this and was confronted with a specialist telling me that my CT scan revealed I had advanced cancer with up to 20 lesions on my liver and blood tests indicative of very high tumour markers which meant that the clock was ticking against me. I sat dumbfounded and paralysed as I tried to reconcile her words amidst a rush of thoughts and emotions swinging between denial, desperation to understand the facts and medical recommendations (for someone who has cancer alive, active and spreading inside their body and in particular invading an organ) and processing the concept that I was facing my own mortality. Externally I held my composure and strangely, for a very emotional woman, I did not cry as I was so distracted with my mind frantically racing for a solution or better still searching for a rewind button. I am certain I held a poker face for many minutes thereafter as her voice started to fade into oblivion with my own thoughts all I could hear, with increasing volume, inciting my heart to race faster and faster. My thoughts went berserk overloading my brain with panic trying to avoid fear. I kept reminding myself I had received a clear breast screen/mammogram only 13 months earlier, desperately trying to justify the scan I was looking at, with a visually distinct liver scattered with malignant tumours, was perhaps not my liver. I was trying to beguile myself but I knew deep down that I had to own this spotty liver - just like the freckles on my face. "These spots do belong to me and this diagnosis is real" was the conversation I had with myself knowing at that moment there was not a single thing I could do to change the reality of my diagnosis. It started to slowly resonate that this was a game-changer and that my life, very literally, was hanging in the balance. My greatest sense of being overwhelmed came with wondering how I would tell my son and my family that I have incurable cancer. Like a firebolt I suddenly realised my diagnosis would change and impact the lives of all those I love dearest. To state this was a colossal fear is an understatement. That is when I started to feel physically sick.
I only became aware of my specialist again when she approached me and grabbed my hand squeezing it as she looked intently at my face with compassion that floated in her watery eyes saying with an apologetic like tone "Tracey, you have incurable cancer. It is advanced. We cannot cure you but there are treatments that may help slow it down but time is of the essence and we need to move quickly". Looking back, I was certainly in shock given I was in optimum health and at the top of my game personally and professionally. In fact, there were slight moments of mental calm amidst that tumultuous appointment, as I also struggled to believe it and question if the diagnosis was a mistake. Understandably so, when only 8 hours before this life-changing revelation I was on my daily power walk, which always included an off-leash run for my dog at our local park, where I was singing out loud with my headphones snuggly-fit to my ears and my arms out-stretched pointing towards the sky giving thanks for my life and every aspect in it and of it! In fact, this had become a daily ritual for me where I would find myself so energised with gratitude and happiness that I was bursting at the seams and yelling (or singing) out loud to release and celebrate it. If the sun was out I would revel in the warm rays on my face. If the skies held rain I would embrace every droplet. I felt invincible believing, at that time, that I had never been happier, healthier or stronger physically, mentally and emotionally in my life.
I didn't feel sick. I didn't have any adverse cancer or liver degenerative symptoms and I looked and felt very healthy and well. I was completely ignorant to the fact that breast cancer was well and truly on the move, within my body and on it's way to taking my life. I hadn't visited a doctor because of ill health. It was a little red herring and a routine check that brought about my cancer discovery and very fortunately gave me a chance to actively seek treatment towards slowing it down.
My initial diagnosis revealed secondary cancer to my liver hence an immediate roller-coaster ride ensued to find the primary cancer so an action plan could be put in place to stop it taking my life - which would have been the case (had it gone undetected) within months or even weeks. Immediately my life was turned upside down with urgent test after test and a liver biopsy divulging that breast cancer was the culprit. My oncologist and medical team were perplexed as to how my liver was holding up and still exceptionally healthy given the extent of the tumors. I couldn't help but wonder if the ironic fact that I had never consumed alcohol, coffee, soft drinks nor smoked and generally adhered to a clean diet (with the exception of chocolate) all my life had something to do with it! Upon those thoughts I then had an answer to a question I have been asked surmountable times by enquiring, and very often bewildered peers and people, as to why I chose not to consume or indulge in alcohol or coffee and never deviated from those lifestyle choices. Fact is most never believed I was sober anyway given my energy, enthusiasm and ability to outlast them on a late night/early morning dancing stint, laughing and reveling in life and whatever the moment presented. My answer to that question, I now know, would have been "I need to preserve my liver and health to fight cancer as it will challenge me one day to come"
I have a fantastic oncologist. He is renowned for the best in his field. He is at the forefront of medical research and clinical trials. He is passionate about patient quality of life. He is open-minded and will not succumb incurable patients to IV chemotherapy for as long as he possibly can exploring and exhausting all treatment options whilst providing unwaivering medical support and care. He is also very pragmatic and realistic. He is open and honest and never beats around the bush. From the onset he explained the reality of my prognosis and made me aware of the facts and statistics which are bleak and confronting. Currently, only 8% of women diagnosed with Stage 4 breast cancer, that has spread to other parts of the body (be it liver, lungs, brain, bones) have a 5 year survival rate relying on the success of treatments to slow it down. There are also different types of breast cancer that impact the types of treatments available; the likely responsiveness of the treatments and obviously the outcomes. It was made very clear to me that my cancer was incurable (that I would never be in remission) and that the approach/focus of treatments was to be one that could only slow down my cancer and "buy time" whilst maintaining the best quality of life. With every treatment there are various (and nasty) side effects which are the trade-off. I was told my cancer could not be exterminated (unless a cure presented) and that it would always be on a mission to "get" me and "outsmart" my treatments and eventually always will.
It became a MIND GAME and a race against the clock. All of a sudden - it was my life before cancer and now my life with cancer. Those days and weeks, immediately post my diagnosis, are somewhat a blur as it was full speed ahead with back to back tests, scans, procedures and an operation and treatments to get my cancer under control. As a matter of sensibility my oncologist also advised I get my financial affairs in order including my Will and all those things important and relevant with specific consideration to my son who is my absolute priority and, at that time, dependent on me. All of the above was nothing I had ever contemplated would be on my life "deck of cards" especially at the age of 48. I had never pondered how my life may one day end and, perhaps negligently, never felt like a Will was a priority at all. Like most of us I just assumed I had years and years ahead of me and that I would grow old. I now know there are no guarantees. Cancer is non-discriminate and our only certainty in life is actually right here and right now. We cannot take anything for granted and growing old is actually a privilege for some. My story, my life is an example of how life can change in an instant and how incurable cancer can lurk over us every day - if we choose to let it!
The beginning of my fight against cancer - treatment Line Number 1
To provide context around my heading "treatment line number 1" it may be prudent to point out that incurable breast cancer treatment is defined in treatment "lines". Essentially treatment line number one is my first lot of treatment towards slowing down my cancer and combating the urgent threat. Treatments are determined by many factors and ultimately advised and administered by an oncologist. Heartbreakingly many patients don't get through or past treatment line one and many more don't survive treatment line two or move quickly and desperately through 4-5 lines of grueling treatments when none of them are working and they continue to get sicker and sicker and ultimately lose their fight against cancer. All treatments come with a different set of side effects and most are cumulative which compounds on the body. Treatments are a means to keeping the cancer at bay with the objective of best quality of life (minimal side effects) because they only work once and treatments eventually run out and certainly get harder the further down the 'treatment lines' your cancer forces you to travel until all treatment options are exhausted.
The agenda is to not only hope your body is responsive to treatments but that it responds for as much time as possible. The cancer is expected to eventually outsmart and become immune to each treatment and posing an urgent life threat again so it is a proactive oncologist who knows you and your disease as well as possible and works with you to not only stay on top of your cancer but ahead of your cancer. All treatments have statistical timelines of success - most only months and not years and the further down the lines of treatment you go the smaller the window of time usually becomes and the more significant the damage to your body and the greater the limitations on your capacity to live a pain-free and independent life with cancer. Importantly too is that access to clinical trials, various treatments and drugs on the PBS are also determined on the basis of how many lines of treatments a patient has had and the types of treatments and their outcomes. Oftentimes first line treatment patients may access newly discovered treatments for free when those patients further down the line may literally have to pay hundreds of thousands of dollars or not be eligible for access at all. There are many harsh realities with legislative restrictions around breast cancer treatments.
My oncologist has become my "knight in shining armor" and my trust and faith in him is second to none. I also have a dedicated oncology nurse who leads a passionate team of oncology nurses and collectively they give me exemplary care. It is KEY to have the best medical care and utmost confidence in your medical specialists and health practitioners. Upon diagnosis, my understanding is that most would have blasted me with radical chemotherapy immediately, instead my oncologist gave me enormous credit for being so healthy and well and believed I was not only physically but also mentally strong enough to take a less conservative approach. My breast cancer is HER2 negative / estrogen positive. So the plan of attack was to starve my body of estrogen immediately hence my oncologist organised an urgent operation to 'whip' (the adjective he used) out my ovaries and induce menopause (a very small price to pay in the scheme of things) and put me on an anti-hormone treatment instantly. Blood tests and a review appointment with my oncologist followed every fortnight to vigilantly monitor the cancer and my body's responsiveness. Interestingly, cancer with all its complexities and unknowns also greatly perplexes scientists, oncologists and the like as to how it strangely can change composition from original diagnosis and morph into a different type of breast cancer which also needs to be closely monitored as this would drastically alter the course of treatments. As at Aug 2020 my breast cancer has unchanged its form. The main side effects, that I experienced, from the anti hormone treatment was fatigue, some hair thinning, hot flushes (every hour or more), sweating and most significant and oftentimes debilitating was joint pain throughout my whole body with some joints swelling and pressing on nerves creating nerve pain. "I am going to turn you into an old lady" was what my oncologist warned me. I may have rose from a seated position like one and be seen to walk like one but most would say I never acted like one! I think that is a compliment?!
My oncologist asked me if I had a bucket list and suggested it may be prudent to discuss and consider it. That was the conversation that provoked planning towards an overseas trip, with my son, commencing in Ireland as I highlighted in my "quick snapshot" above encompassing my Irish heritage. My oncologist kindly agreed to give me a "leave pass" (as long as I did so immediately I had recovered from my operation and respected my physical vulnerability ardently) and let me embark on an around-the-world, once-in-a-life time "mother and son" adventure. Mindful that my cancer may not have responded positively to treatments, my oncologist was encouraging me to consider the potential to undertake any life aspirations with a sense of urgency. My objective for a trip with my son was to do something very special together, share new experiences and have quality time bonding, learning and embracing life with our new glasses on given everything looked and felt and was very different, for us both, with cancer on board. My desire was to also create significant and special memories, hopeful they would be of benefit to him in the future with the reality he may lose his mum earlier rather than later.
A phenomenal 6 week global adventure ensued and was to be the second most momentous experience of my life. The first being my son's birth. Cancer, with all its drudgery, has actually been a gift to me for so many reasons, which I will explain in more detail later, including this trip which ordinarily may never have materialised. An opportunity for exclusive, precious and meaningful time with my then 19yo son (I was 48yo) sharing moments together experiencing corners of the globe, different cultures, visiting historical sites and landmarks, exploring hidden secrets and just being together as mother and son living in the moments as we commuted on planes, trains, buses, automobiles and boats, from one city and country to the next across our big planet savouring it all as we tried to come to terms with what life had presented us. Accompanied by the best medical care, guidance and support, we agreed that the greatest weapons we could arm ourselves with to fight cancer was to collaborate with strong minds, positive attitudes, grateful hearts and the right tribe. As well as a practical plan to fight cancer we also understood the value that optimism, hope and faith would play in this challenge along with accepting it as part of our lives for the rest of our lives - however long that is going to be.
Reality is we all have to face death at some time and I can honestly say I was not / am not afraid of crossing to the other side and hand on heart feel incredibly blessed and have already lived such a full, fulfilling, meaningful and rewarding life BUT my greatest fear was/is leaving my boy and imposing grief upon him. That said....we all have to face and manage grief at stages through our lives and we grow up assuming we will grow old but one thing I have learned is that growing old is a gift and not a guarantee and that the grief card may come unexpectedly and we just have to play the hand we are given. All these challenges shape us and if we look hard enough all challenges have both pros and cons. My salvation is knowing that my boy is a mature young man with the world at his feet and the capability to forge ahead with his life no matter what the future holds. I know he has absolutely everything he needs, within, to create and live a wonderful and full life with me by his side or living in his heart.
My/our journey with cancer, and living from test to test (holding our breathe for confirmation that my cancer is still under control) the turbulence and panic when treatments stop working and the tumor markers start rising, the uncertainty if the next treatment will be successful and what the timeline is likely to be combined with seeing his mum's life challenged from day to day has provided him with life experiences, emotional growth, strength and resourcefulness that has shaped him and contributed to the amazing human being he is. I have enormous faith in his logical mind, balanced approach, commitment and diligence to strive for good outcomes, his strong moral compass and his many innate and admirable attributes - they all give me immense comfort. I know he will do his best and rise to all life throws at him. Indeed I know he will be my greatest legacy. He is certainly my greatest achievement in life.
All that said, he is my greatest inspiration to defy the odds and keep this cancer under control to get as much life mileage as possible filled with laughter, gratitude and love. A mother instinctively wants to nurture, support and comfort her children no matter their age and I am no different. A mother also thrives on being included in the milestones of her offspring and I keep ticking them off taking none of them for granted in the slightest. Thus far, as a team we have outsmarted my cancer against the odds and whilst my oncologist will hail that as a massive and literally rare achievement unto itself - I just know in my heart I have several more years in me yet and then some. "Believe in the unbelievable"
I was incredibly fortunate to get 3 years of time out of my anti-hormone treatment and manage the side effects relatively well as I continued to live and love life enjoying every single moment deriving more and more pleasure out of some of the most basic and simplest things. Notably my son turned 21 and I was able to celebrate with him and our family! A big win!
Cancer catapult - the treatment you can administer yourself
My priorities changed significantly. They had to. I had no choice. Cancer forced me to learn to feel comfortable with being what I once considered selfish and making myself, which is ultimately my true well being, THE priority and understanding and learning what that looked like versus what beliefs I held and the life I was accustomed to living which had very likely led me to getting cancer in the first place.
Whilst scientists and medical experts continue to research what definitively causes cancer, so we can cure it, there is a lot of scientific evidence around contributing factors including smoking, drinking, diet, exercise and stress. It has been strongly suggested that chronic stress is associated with an increased risk of a number of cancers, including breast cancer. Studies reveal that over time stress harms the body causing everything from inflammation to cardiometabolic disease and may play a role in causing cancer with a lot of biological reasons that the association could exist. What is proven, with increasing evidence is that stress can accelerate progression and worsen outcomes for those who already have cancer.
Acute stress is completely normal and helps us react to dangerous situations. For instance, if a predator is chasing us, the body's stress response makes our heart race, sharpens our vision and we go into survival mode. During a stressful situation, our bodies turn on two key pathways. The first one is the 'sympathetic nervous system' which triggers the 'fight or flight' response and the second one is the 'hypothalamic pituitary adrenal (HPA) axis' which releases a key stress hormone called cortisol. Essentially, in the short term these two axes turn on to help us get through a stressful situation. When the stress abates the physical response is they turn back off . It is founded that if the body is in a state of prolonged and/or repeated stress/distress (anxiety, worry, fear, sorrow or pain) then chronic activation of these pathways persist and, given the body isn't designed for this, adverse physical changes occur including altered metabolism, increased levels of certain hormones, that can induce DNA damage and affect DNA repair, and the shortening of telomeres. Telomeres are the caps at the end of each single strand of our DNA that protect our chromosomes, like the plastic tips at the end of shoelaces. Without the coating, shoelaces become frayed until they can no longer do their job, just as without telomeres, DNA strands become damaged and our cells can't do their job. Chronic stress also weakens the immune system and given our immune systems act as a cleaning crew inside our bodies, that destroy damaged cells and fight infections etc, a weakened immune system could be the doorway in for cancer cells. Whilst there is a lot of study and theories, the majority of scientific evidence ties stress to cancer survival, not to the risk of getting cancer so eliminating stress is imperative.
Therefore I sought to find all the triggers, instances, people and circumstances in my life that perhaps weren't serving me well. I looked and my home, work, family and social environments and stepped away from myself to consider the dynamics of my many relationships and started to slowly but surely assess them very deliberately and measure them by consistent behaviours which provoked uncomfortable, sad, disappointing or stressful feelings. With counselling, mentoring, guidance and advice collectively from my cancer-patient specialists I slowly worked through all types of things that may have caused me stress be it inadvertently and however big or small. Oftentimes self inflicted by my own belief system and desire to please, to help others, to keep the peace and to do what I thought was expected and the right thing. I found it hard to learn that I was actually taking on the values of others and doing myself a huge disservice. Cancer made that clear. I love making others happy and only very occasionally would say no to someone or something and found that immensely difficult so the first thing I knew I had to do was become mindful of saying 'yes' to myself more often and 'no' to others and become comfortable with that and the consequences thereof which I was told could take months even years to play out. I was being told and constantly reminded (by my medical team) that in not doing so and in taking on the burdens of others, taking on unnecessary activities or involvement; living up to the expectations of others and being relied on by others, most with harmless intent, for one reason or another I was feeding my cancer and that 'no' is no longer an option but a necessity for life which is the paramount of our earthly survival.
When diagnosed with incurable breast cancer - you will find a plethora of information, community support groups, medical advice, on-line and real-time classes and sessions, chat rooms, forums and oncology patients and doctor teams to tap into for help with the diagnosis and management of the disease and to prepare you for how cancer and treatments will impact your physical and mental life and the impact it may have on those in your life, particularly those closest to you, and the reason why many things change including relationships. I strongly encourage those with incurable cancer to partake however possible. I have personally found it invaluable. Every single patient I have met, that has incurable breast cancer, has very similar stories about how differently people in their inner and outer circles respond to their diagnosis and life with cancer and ongoing treatments. We have all had family and friends that have come and gone and new friends who have instantly become family. Many patients struggle with relationship changes and consequently succumb to their cancer versus gaining freedom and strength to fight it with these necessary life adjustments. Another tool I have found essential is resilience and the strength to walk away. We have all met that someone who has their own firm beliefs about cancer and how it can be cured. Those that tell us what to do and what they would do if they had cancer or what someone else, they know, did and overcame cancer. None of that is helpful. We have all been regularly faced with people who have a remedy or advice on what we should or shouldn't do or eat and alternative therapies etc etc. We have all been exposed to strange, hurtful and insensitive comments and behaviour. The majority of this is well-meaning but counter-intuitive. Everyone seems to have a remedy or advice on what you should or shouldn't do and certainly someone to quote as an example. We have all been told that there is no guarantee in life for any of us and that we could all be hit by a bus tomorrow. This is generally a comment from someone in a position of privilege in so far as they don't have cancer. Most people do have the very best intentions and just lack understanding and the capacity to truly stand in your shoes and set aside their own needs and beliefs. Others just simply don't know what to do or say, or how to act at all - as desperately as they truly want to know what is best for you. Some genuinely struggle to face your mortality with you. Others may be filled with dread and fear that they yearn for more and more from you that you cannot deliver - especially with cancer and treatments on board. And some just walk away. It is all okay. Cancer changes the patient and all those around the patient. It can be enormously painful for those that genuinely love you and as a patient we also need to keep that in mind without compromising what is the best medicine for ourselves. It is about identifying who and what works best for you in your fight against cancer. Along the way, those things and people will change too and that is normal and okay. That and those which make me feel happy and stress-free is what I embrace in my life. Another lesson cancer has taught me is to learn to receive from those that offer unconditional support and understanding. This will only serve you well and give you the right fuel to fight your good fight.
Very soon I realised another gift that cancer bestowed me was being forced to make radical changes in my life for my survival that ironically would bring me more happiness and peace than I had known before or felt possible. Cancer has empowered me in so many ways. I learned to balance my life and pace myself. I accepted that I had to make compromises and I have allowed myself to be my true self and do what makes me happiest even if that means letting someone down to do something as simple as make my son a hearty meal because that gives me the greatest pleasure or forfeit social commitments for others because I want to be well and strong enough to enjoy his footy game on the weekend ahead. I have come to the resolve that cancer has created limitations in my life but I also believe they serve me very well because whilst I believed I "felt" deeply pre cancer.....there is nothing quite like what I feel, see, smell, taste, hear and breath now! There is so much magnificence in life to behold when you slow down and truly look at the big picture. Like it is the first time and mindful it could be the last. Everything becomes magnified. Profundity at its best. For me, to gaze upon a single dandelion, for example, is like an awakening of all the senses as I become awe-struck with it's beauty as a pretty weed amidst the grasses, its strength to blossom despite the wind, its structure, its intricacies, its coming to be and all it may represent. These daily kinds of experiences are salubrious.
On the Move - Treatment Line Number 2
In October 2017 my cancer found its way around the anti-hormone treatment (although it did take the sucker 3 years) and my tumor markers were on the rise again and moving quite fast with one of the larger tumors on my liver proving to be problematic and active. I was hopeful of a liver dissection to eradicate the troublesome tumour (as the other tumors were somewhat sleepy in comparison - albeit no guarantees as to when they may wake up) however the liver operation was deemed not viable and way too dangerous with new tumours discovered totaling 21 throughout my liver and not favouring any lobe in particular spreading itself all over the place. And for the first time the cancer was starting to impact my liver with results showing it getting angry and my immune system was struggling so we had to up the anti before the cancer got too far out of control. I was also starting to feel quite unwell and for a few months leading up to this struggled to find my 'mojo' and had fallen into a bit of a slump. Unfortunately radiation was also off the table because of how widespread the tumours were however my oncologist, focused on giving me the best quality of life prescribed me with oral chemotherapy vs intravenous so as I could administer in the comfort of my own home. Grateful this is now an option with progressive advancement over the past few years. SUCCESS struck again! My tumor markers slowly but surely went down. The chemotherapy now available in oral form was called Capecitabine dispensed under the brand name Xeloda. Capecitabine is a type of chemotherapy called an anti metabolite. The body changes capecitabine into a common chemotherapy drug called fluorouracil. It stops cells making and repairing DNA. Cancer cells need to make and repair DNA so they can grow and multiply.
The transition to the oral chemotherapy was a massive adjustment physically and mentally as I tried to dispel thoughts of fear and worry about whether it will be effective and if so, for how long. Aside from mild nausea and chronic fatigue, the worst side effects of Capecitabine was 'hand and foot syndrome' (which is very typical for almost all patients on this chemotherapy) where the soles of my feet were literally burnt, bleeding and ulcerated with skin peeling in layers. My hands were burnt too but much more manageable. Whether chemotherapy is oral or intravenous (and there are so many different types of chemotherapy) the side effects are nasty and need to be managed. I was doing that relatively well and we kept tweaking chemotherapy doses to minimise the impact the side effects had on my day to day life and on my ability to undertake normal daily chores and activities. Commonly with Xeloda I was put on week on/week off chemo cycles.
The oral chemo treatment bought me 11 months of life with pretty good quality of living and supported me through lots I feel proud to have achieved and more time with my son and another significant milestone - his graduation from University achieving Degrees in Law and Commerce. During my second line treatment I felt compelled to give something back, as an expression of my gratitude for doing so well, and towards cancer - a disease that exposed me to so many with hardship, pain and loss I never imagined or had seen first-hand before. I wanted to raise some money towards supporting patients with cancer and specifically for research into a cure. With the help of wonderful family, friends and community behind me I was able to organise and host a black tie charity ball which took place in October 2018 with over 450 guests attending and contributing to raising funds for those brilliant minds to continue their invaluable research into a cure for cancer. This event turned out to be successful towards creating awareness and culminating a fun night in a room filled with love and proceeds totaling $65,000 which were donated directly to Peter MacCallum for Professor Geoff Lindeman, who attended on the night and presented to guests providing an insight as to how the funds would be used towards his dedicated research for advancement in treatments to provide longer lives for those with incurable cancer and creating better quality of life for as long as possible. I was very humbled by so many who supported me to bring this event to fruition including some highly respected well-known Australian profiles who kindly donated their time and energy to speak and entertain. It was a night to remember for so many reasons!
Further to my charity event above I committed to and completed the Peter MacCallum "Unite to Fight" Cancer 21km walk, in October 2018, with my son and a wonderful team of family and friends who joined me and together we collectively raised an additional $75,000 for Peter Mac in its research towards a cure for cancer. Thank you to those who have so kindly and generously donated to my campaigns to date and who physically walked with me - it was a very humbling and moving experience to say the least. I could not have done any of the above without the help and support of so many.
Moving Again - Treatment Line Number 3
In November 2018 my tumour markers started to take off again, with more speed this time. My liver became of concern again too and results showed my cancer was gaining some momentum therefore rendering my previous treatment no longer effective against cancer. Thankful for valuable research, trials and medical advancement, I commenced a ground-breaking combo-treatment, known as cyclin-dependent kinase "CDK" inhibitor therapy combined with an aromatase inhibitor. This CDK treatment was the first in its class to be approved in Australia and my oncologist believed I would be a good respondent. Given I was now third line treatment I could only gain access to this therapy at a premium cost and with not much change expected from $100k for this treatment my family insisted on financing it for me. Their strong preference would be to keep this discreet but I feel the need to publicly acknowledge and thank them for their generosity and support. The then relatively new treatment referred to as palbociclib (under the brand Ibrance) was a 3 week on and 1 week off cycle of daily drugs plus fulvestrant (faslodex) intramuscular injections monthly administered in oncology at hospital. Palbociclib is a targeted (biological) therapy that targets and interferes with processes in the cells that cause cancer to grow and fulvestrant works by blocking the action of estrogen on the cancer cells. It binds to the estrogen receptors, making them change shape and stop working.
Slowly but surely, albeit with new side effects to manage, the treatment begins to work slowing down my cancer progression again! Research indicated that this new combo-treatment has proved, in some patients, to "buy up to two and a half to three years of time" for a specific stage IV breast cancer with metastases like mine - so I was incredibly hopeful! The biggest side effect, aside from debilitating fatigue was low neutrophils and compromised immunity which landed me in hospital a handful of times trying to combat simple viruses. I had monthly tests to monitor my cancer and in less than 12 months my tumor markers started rising again forcing me to look at the landscape of my life and external factors that may have been detrimental to my fight as my oncologist suggested stress may be impacting the effectiveness of this treatment, that we anticipated would have been effective for much longer, and along with other physical indicators he was adamant to help me identify changes and adjustments I needed to make to eliminate unwanted stress and any negative energy to get me back on track and I did so accordingly. With my dedicated and strong oncology team, strict medical instructions and some new found inspiration including powerful unwaivering support from family and friends who consistently demonstrated selflessness and understanding and gave me strength with everything from pure kindness, thoughtful texts and gestures of encouragement, to unique surprises and home-cooked meals and care packages I was ready to knock this cancer down again . Having the right team of people around you is monumental to your collective treatment and how you may fare. This is something my oncology team take enormous interest in too. The ones that are truly prepared to compromise what they want or need from you - for you and your best interests - are the only soldiers to have on your team.
Sixteen months into this treatment my tumor markers persist at rising and a specialised PET scan now shows my tumour count at 44 lesions on my liver with 3/4 of "the suckers" alive and active. My disease is slowly but surely progressing. The game plan that we have adhered to so unyieldingly for the past 5 years significantly changes. We will no longer put weight (and hope) on treatments towards getting my cancer to sleep instead we strive to keep my liver healthy and almost play russian roulette with cancer prolonging the next line of treatment for as long as my liver can hold out given we know it is going to have to be hard core intravenous chemotherapy with no turning back. At the onset of my diagnosis, my oncologist used the analogy akin to my liver being a christmas tree laiden with breast cancerous tumours that would be the christmas lights. Treatments were specifically working towards keeping the christmas lights turned off, that is, keeping tumours weak, asleep, sleepy, inactive. We had achieved this until now with three lines of treatment. Massive WIN which had equated to 5 years of life with quality of living I couldn't have imagined and beyond so many of my cancer sisters who have heartbreakingly lost their battles. I am surrounded by the harsh realities and cruelty of cancer daily and just cannot fathom why I am, one of the few lucky ones, in the 3% now living with this type of cancer beyond 5 years. Why.....me? Over the course of the past 5 years my 19 tumours (christmas lights) pale in number to the 44 that now exist on my liver - all of varying sizes, the biggest being almost 5cm and positioned just under my diaphragm. Status quo at this point in time is 3/4 of my tumors, my christmas lights, were on; some blinking and some with solid light. A PET scan is mostly used for cancer, heart disease and brain conditions. It is invaluable in managing liver lesions, in particular in the evaluation of suspected liver metastases and is currently the most sensitive non-invasive imaging modality for the detection of hepatic metastases. The scan uses a special dye containing radioactive tracers. These tracers are injected into a vein in your arm. The PET Scan then works to identify areas of hypermetabolic activity in the body and on organs. The radioactive substance attaches to glucose, which is attracted to cells that are hypermetabolic. When the scan is done, these areas "light up." Perhaps you may find it very hard to comprehend my reactive laughter to the terminology my oncologist used at the appointment where he disclosed the above results, "Tracey you are now lit up like a Christmas Tree" he said. In theory it is not funny at all but perhaps it was a mixture of my feelings wavering between visualising myself as a truly beautiful sparkling Christmas tree and a satisfying sense of power as I became aware of my inner voice gloating "well....it has only taken you five years cancer". We persist with this treatment and my oncologist monitors me more closely with weekly visits to see how I am as I live alight (the beautiful Christmas Tree....LOL) with fortnightly tests watching my tumour markers escalate as we rely heavily on my liver to stay strong and healthy despite the invaders.
I play with fate, with enormous faith and hope and trust in the Universe and the collective remedies/strategies that I practice to keep this beast from impacting my liver or spreading to my bones and/or brain. I was determined to stretch and challenge my liver for months and months and even years to prove to cancer that it is possible to live with it and laugh in its face some more and louder.
It can be a very scary state of play when you know cancer is actively living and thriving inside your body and you have daily side effects to remind you. Key for me is to always focus on the achievements and the wins and stay in the present. I place more value on what I can do, with cancer and treatment side effects on board, versus what I can no longer do. I continue to question why I am defying the odds and wondering when my luck will run out when I know others in my predicament have lost or are losing their battles as I stand witness. I do my best to allow myself to be distracted with the magnificence and the meaning of life itself and my purpose - which I can't help but feel is to continue to help others face cancer however that may look for them hence my commitment to charitable initiatives and involvement for as long as I am physically and mentally able - be it in the smallest way. Due to so much demand and my continued gratitude and keen desire to raise more funds for research I had scheduled another charity event which was to be held in August 2020. With a dedicated committee of awesome humans it was certain to be a fun and successful event. Unfortunately due to the COVID-19 global pandemic this event was cancelled. A heartfelt thank you to over 800 people who purchased pre-sale tickets and secured tables before we even had a chance to publicly release; to those who generously pledged donations of goods and services and to the committee and community who were on board to support and facilitate this 1500 guest event. All refunds have been completed and Peter Mac is very thankful to so many who forfeited their refunds into donations. Thank you also for so many other acts of kindness and generosity including goods and services that were going to be donated towards the event that have been extended in lieu to those experiencing hardships throughout the corona virus pandemic, donated to the Royal Children's Hospital and Challenge (kids fighting cancer) and to specific families living with and fighting cancer including uplifting experiences for a handful of young children going through aggressive cancer treatments.
Many have asked me about a book I have written that was due to be released at the end of August 2020. It is with publishers but I have decided to postpone its release to coincide with a pending event late 2021 and considering updating it to include insight into my current treatment.
Here I come - Treatment Line Number 4
March 2020 and I am rushed to the emergency department struggling to breath with an enlarged and bleeding liver and in acute and unbearable pain. There was no build up and no warning signals. Sharp pain upon every small breath hit me like a freight train, my liver started to distend from my stomach and I needed oxygen desperately and was semi-conscious. My liver had become cancer symptomatic and we needed to find a new treatment to attack the cancer as soon as possible. I was admitted to hospital and made comfortable and intravenous chemotherapy began. My oncologist has prescribed a taxane class chemotherapy called Paclitaxel (brand name Abraxane) with weekly visits to hospital for chemotherapy sessions. I have had 15 rounds thus far over 5 consecutive months with infusions and boosts to keep my white blood count in a safe range. Chemotherapy is taking its toll with many adverse side effects and toxicity to my body. It is by far the hardest thing I have ever had to do but it is my only option to stay alive. My quality of life has diminished as expected but the redeeming feature is my tumour markers are coming down again and my liver is functioning normally. Winning again!! My spirits are high and I am feeling emotionally and mentally strong.
My body is taking a beating and my haemoglobin is low as is my immunity and I have zero energy. One cannot have chemo indefinitely. The chemotherapy will eventually create other medical complications that will almost certainly take your life over the cancer so whilst it is risky to stop it, for an intermittent break, it is absolutely necessary. Chemo induced symptoms and challenges including infections I cannot get under control resulting in surgery has forced me into a break from it. I need a chance for my body to heal and repair - even just a little with everything crossed that the cancer doesn't bounce back too quickly and in the least my liver stays healthy for a month or two or three before I have to start chemotherapy again. My oncologist told me that ordinarily with the amount of chemotherapy my body has endured it would take up to 18-24 months to recover but I don't have that option however I am feeling optimistic, hopeful and very determined to heal and re-build some physical strength and resistance within my body to handle what the next cycle of chemotherapy brings. There are several chemotherapy options available to me hereafter - each with a physical price to pay - but I will pay anything for life and more time with my son, my dog, my family and my friends and to continue to celebrate life.
I am adamant to keep living and celebrating life the best way I can, as I am, with those I love and cherish.
Embrace today and right now! Spread acts of kindness. No act is too small and be kind to yourself!
Love and Blessings