Satori moments

Breaking the bonds of childhood grief and adult trauma is a day by day challenge. In the regular rhythm of life, the ghosts of the past are silent until awoken by the remembrance of fear. When emotions are evoked by fear, the inner child calls for recognition, reaches for your hand and pleads to be taken with you into the light of the now.
I had struggled over the past few weeks, in my decision making between allopathy versus traditional medicine. I had undertaken knowledge transfer with academic fever and in the course of 12 weeks had attempted to be better informed, more enlightened and more in control. My library now boasted 15 new books, including e-books on a subject that prior I had 2 books, a legacy from my father’s earlier battle. ( I had succumbed to the lure of convenience of my iPad but unable to totally surrender to the loss of dog eared corners and smell of fresh print.)
The desire to pilot, was not new, for being in control had been a life-saving strategy that I had applied from childhood and honed in leadership. (The unconscious laugh of kookaburras high in the gum tree adjacent from my bedroom window, mocked at my self delusion that this had come without great personal sacrifice.)
I had been preparing like an actor, gathering nuances, character positioning, and honing my approach to land. My previous metaphor of a weary soldier unsure if her armour of resilience was in tact, was not reflective of my physical state, but rather by spiritual state. I had debated whether people undertaking cancer treatments were less reluctant to stepping into the ‘dark abyss’ if they were less connected in faith, or if those in faith had maintained an umbilical cord to God and were washed in saving grace.
There was little scientific research into this, and not surprisingly so, as such mind-body connections had no place in allopathy. Google search provided names like Alan Gawler, a multitude of Utube videos which stretched from Utah to Irasel, espousing all manner of cures, and the quantum doctors and metaphysical gurus, like Deepka Chopra, Louise L Hay and Dwayne Dwyer, who attempt to bring into practice the manifestations of spirit in the physical now.
I knew what I needed to do was to find my own way back on the path of self enlightenment. I had been blessed to be raised my Christian Spiritualists, who simply practiced humanity and walked the word of God. They walked the ‘road less travelled’ and did not bow to the ritualisation of dogma and the theatre of gilded costumes. My father had spent the majority of his 97 years in the practice, and debate of faith and the manifestation of such beliefs in his life and the lives of others. His bookshelves are peppered with the hollow words of atheists like Dawkins, he is unafraid to call all denominations and believers in the power of spirt as his friends. (It is in this human salad of conscious faith that his lounge room regularly stills converts to a place of great entertainment.)
In this pursuit for peace, I resumed the practice of active faith, counselling, visualisations, scripture reading, quantum physics, prayer, meditation and elder healing. I took this approach into my first cycle of chemotherapy.

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Altered states of reality

The simplest of tasks, such as the renewal of a driver’s licence takes on new complexity, after the diagnosis of a life threatening illness, such as cancer. My options were simple. Renew my driver’s licence for 1 or 5 years. I was not required to have a new photo taken, unless I wished. Post diagnosis, your life is measured in expectancy of time increments of 6 months, 12 months, 3 years, 5 years and 10 years. The medical profession has redefined ‘cured’ to mean alive five years after diagnosis, which is not be confused with ‘cancer free’ or ‘healed of your disease’, which is what most of us would expect by the use the of the word, ‘cured’.

Back to the dilemma of the renewal of my driver’s licence. If 1 year is selected, is this a resignation of faith, that I will not be alive to sit behind the wheel in 12 months? If I choose 5, is that a prediction of life expectancy without evidence? Of course, we all renew our licences, car registration, insurance, lease agreements without guarantee and some of us, commit to 50 months of interest free credit on the belief that life will continue unabated. This illusion is shattered by a diagnosis like cancer.

Our national security approach seems to come unstuck at the domestic terminal, as the photographic image on the licence can be renewed without update for a period of 10 years.  Some people are graced with being photogenic, while others have mugshots that rival Underbelly characters, emblazoned on their passport and licence. I am somewhere in between, however my identity has been challenged of late with the diagnosis of cancer and the subsequent removal of the tumours. I became a cancer patient, then a cancer survivor.Though new to the breast cancer survivors club, where 5 years marks the first survival point, with the type of cancer that I had, 3 years is the marker of likelihood of reoccurrence, then statistics mirror that of women with oestrogen-sensitive breast cancer. The statistics you learn are manipulated to include treatable cancers and to include those people that die outside of the 5 year period as cured, regardless of the fact that they have passed over.

The image on my current licence is 5 years old and renewing for another 5 years, at $59.00 is the cheapest anti-ageing strategy that I have found. I have however changed irrevocably since diagnosis, and my first surgical intervention. I will be further altered after the upcoming bi-lateral mastectomy. What should it matter? It is only a headshot on my driver’s licence after all.

I have additional definitions for A.D. and B.C. They now mean after diagnosis and before cancer. It is impossible for me to face my own mortality and return to a life in a pre-awakened state. I was not sure that I wanted an image of the ‘past’ me. Perhaps an image B.C will remind me to be ever vigilant of the slippery path of complacency.

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Administration gremlin

Absolutes that are not coated in the sticky reside of bleak prognosis have been few and far between. A talented and compassionate, straight talking Russian GP summed up my concern in delay in undertaking bi-lateral mastectomy surgery, with these words, ‘who cares?’. The goal posts had shifted from the original treatment plan in November, post lumpectomy surgery, which proposed 4-6 weeks of chemotherapy, followed by 6 weeks of radiation.
My surgeon had called me, in early December,  before his rooms closed for the Christmas/New Year period, to advise me that a bi-lateral mastectomy was recommended. He delivered this information via the phone. The shock of that recommendation was overwhelming, the method of delivery inconceivable for a professional. The art of a surgeon’s blade and neatness of his stitch, is  more important than ‘bed side manner’ and surgeons are well known for their lack of emotional connectivity for obvious reasons. It seemed that there was no end to the proposed carcinogenic treatments and the devised mutilation of my body, in the pursuit of saving my life.
The advice regarding the recommended bi-lateral mastectomy was supported by a radiologist a member of multi-disciplinary team from Royal Perth and Sir Charles Gardener Hospitals. I was grateful that my case had been presented to such a team for a second opinion. The new proposed treatment comprised of 4- 6 cycles of  chemotherapy, then a bi-lateral mastectomy after a month’s healing, post chemotherapy. The former proposed radiation was considered ineffective in guaranteeing maximum protection for re-occurrence and the risk outweighed the treatment.  In the weeks, between my last contact with my surgeon, I had not undertaken chemotherapy treatment. I had accepted only one of the three cards offered.
My cancer had been removed by an well respected and acknowledged surgeon, the margins around the tumours were ample, my blood test for CA125 (cancer marker) was normal, there was no sign of infection throughout my body, no lymph node invasion, my remaining right breast tissue was without concern and my left breast clear of legions, so there was both no need for chemo or concern for short surgical delay. The three GP’s I had seen and who were managing my case, two in the absence of Dr Kelly, as she too, was overseas visiting family for the festive season, had suggested additional testing to guide my decision making. Armed with these positive absolutes, I steadied myself for the next encounter with my surgeon.
His administrative officer, a gentle soul rang to express concern in fitting me into the surgeon’s schedule as I had been planned for surgery in four months. ‘We expected you to have chemotherapy’, she said in a tone that betrayed frustration that a well planned schedule had been effected. She did however find an appointment date as soon as possible in January with the surgeon to discuss the recommended bi-lateral mastectomy and immediate reconstruction surgery. It is in these moments, that having private health insurance really pays off, as the secondary question involved my health insurance status.

Big Pharma’s Australian cousin

Last time I looked Australia was a democracy. I have since discovered that cancelling a heart appointment for an Electrocardiograph results in protocol which requires your referring doctor’s permission. I think not. I appreciate that the $420 price tag with no rebate, is enough reason to cancel for some, and perhaps there is some payment plan, though I did not ask. I was too stunned by the follow up permission required. I declined the procedure and raised concern for my individual right of refusal.
Walking the road less travelled evokes fear, in not only myself. Another misguided fool, the subtext of conversation and facial expressions. I acknowledge that most health care professionals are driven by genuine care and concern for your well being. They are however used to compliant frightened folk, who shuffle in and follow directions, and who will be guided back onto the path when behaviour is deemed non-compliant. If you refuse, they threaten with ‘protocol’.
In almost every interaction with an employee of the medical machine, fear is part of the transaction. There is a need to re-clarify if you understand the difference between in situ, localised and systemic. While at the early stage of cancer, it is a matter of grey, if systemic occurrence has commenced, the strike force approach is applied.
The medical model is a five card deck. Surgery, hormonal pharmaceuticals, radiation , chemotherapy and death. The last might be only a ‘reaction’ to cancer and not a ‘side effect’ of the proposed cure.

Wearing an iron cloak to welcome in the new year

New Year’s Eve looms and with it the expectations of resolutions and the setting of 2013 goals. My goal is as simple, to remain cancer free and healthy for the next 30 years. My first milestone is one year post removal of cancer, then my 2nd anniversary and finally, the passing of the 3rd year. After that, my odds of reoccurrence bring me into alignment with other women who had been diagnosed with oestrogen sensitive breast cancer. My resolution is to stay strong in my faith and be open and accept that I may have to have both a bi-lateral mastectomy and chemotherapy.
Each time I engage with the medical profession, I do so with trepidation. It would not surprise me if my file is coded, ‘anxious patient’, for I don’t go quietly. I ask questions and I thank each challenge that rewarded me, resilience and a voice. I research each treatment procedure and the side effects. I do all in my power, to improve my experience, such as hydrate adequately prior to all needle interventions with my veins. On the 27th I undertook an MRI for my breasts to ascertain if there was any cellular change in the remainder of my right breast or at all in my left breast. This procedure includes an injection of Gadolinium dye which is pumped slowly through a cannula in your arm while you are enclosed within an MIR machine.
I rang the service located in the hospital to discuss the procedure. Initially I was responded to by a receptionist gatekeeper who ‘baby-talked’ to inform me that I would be having a little needle, a little dye and that it was nothing to worry about. At the mention of side effects, she referred me to the ‘technician’ who proudly claimed no-one had experienced any ‘side effects’ that he knew about. I recounted the list, of potential side effects from Gadolinium dye, including pain and burning at site, low blood pressure, minor skin rash, mild headaches,blood clots,lightheaded ness,nausea, hives,shortness of breath and fibrosis,a thickening of skin and connective issue especially in the joints. In the extreme, side effects can include swelling of the tissue of the liver, lung, and the myocardium around the heart and may lead to death.
He retorted that these were not ‘side effects’ but reactions. I challenged the semantics of language. The conversation continued and ended politely, with my appointment scheduled to occur in the hour. I weighed up the odds, hoping that the technicians may be just a little more careful with a ‘anxious’ patient than one who blindly submits to authority . I attended, filled in the paperwork which included a similar list of potential ‘reactions’ and signed away my right of litigation and followed the nurse, who enquired cheerily, if I had good veins. I was to discover my veins are fine and deep.
After robing in a front opening gown, the nurse led me to a small consultation room and attempted unsuccessfully to access a vein in my left arm in which she intended to insert a cannula where the dye would be pumped. My veins refused to cooperate and collapsed, she requested assistance from a senior nurse who achieved access from a vein my forearm. I thought about the potential impact for chemo treatment, where failure to access forearm veins, leads often to the use of the back of your hand which is very painful or a port directly in your chest wall. My veins were also voting so it seemed.
For those who are yet to experience an MRI, depending on whether you are surrounded by the dome or partially engaged, the sound is memorable and unique to this medial equipment. While not in the league of a stack of Marshall speakers, or belligerent as a jack hammer, the metallic pounding in syncopated thuds is invasive and strikes at the core of your being. This was not first MRI however it was the first one where I lay on my stomach, arms pinned back, palms against my sides and my breasts hanging in a frame. There I lay as motionless as possible for 50 minutes, while two full MRI were undertaken, one without dye and the other with dye flooding into my veins. The $350.00 procedure is not covered by Medicare or Private Health cover.
I have been blessed with a wonderful support team, and have via social media the opportunity to share my current health challenge with those most precious to me and with complete strangers via this blog. I am however alone in treatment, alone in pain and alone in all my decision making.
In these moments, I draw deeply into my faith, to comfort me and I use meditation to protect my spirit from the invasive experience of medical technology. Faith has been by constant companion and in the darkest moments, it is the light that chases the fear away. Like cancer, the fear is aggressive. I have a new iron cloak that is mine, and one that remains ever present. It takes little to find myself wearing it, despite all my best efforts to keep it closeted.

The great debate continues…

Christmas has retreated with the faint sound of ‘ding, dong, merrily on high’ and the comfort of normalcy has evaporated. I have proclaimed my thoughts on chemo and attempted to round up supporters whose eyes reflect, ‘grateful silent thanks’ that this journey is not theirs. I had done a sterling job to buffer myself from my triple negative breast cancer diagnosis, only for it, to unravel like a over- excited child mid afternoon on Christmas Day.
If had been wise, I should have warned Greg, Sue, Charm and Rose, my support team that I was proned to ‘run from risk’ and to look out for signs of ‘rationalising’ my way out of chemotherapy. A child of violence, I had been programmed by circumstance and in my adult years, remained in a state of post trauma, resilient and ever ready to flee. Cancer was a foe that I could not run from. This time, I had to stay and fight to keep the flesh in which I inhabit.
I thought about the many battles that I had fought and won. I feared that I was like an ancient warrior who did have the strength to raise a sword and swing. I was overwhelmed by the enormity of the enemy’s arsenal and reduced to a sobbing mess. I am a woman who has been allergic to ‘drama’ any place other than which it belongs, in a medium for entertainment. To have the ‘cancer drama’ means that you are forced to engage with a roller coaster of raw and unpredictable emotions. To hear your pathetic bleating of fear and bear witness to your foolish attempts to avoid the inevitable.
I was ‘over’ it, before treatment, and now post first surgery the cancer ‘journey’ was wearing thin. Who would undertake a journey that would be fraught with fear, pain, despair, confusion, grief, anger, resignation and be willing to continue to travel not knowing the final destination. Having a diagnosis of cancer is like being in a constant state of overwhelming fear. Greg was ever stoic and while annoyed that I had delayed treatment to have a chemo-free Christmas, rallied to the call for arms to again debate the pros and cons of chemotherapy treatment.
I returned to the Web, to decipher the reams of conflicting paradigms and comments from cancer survivors and loved ones of the dearly departed. I decided regardless of my choice, I would never engage in advising anyone regarding options. I understood the dilemma that doctors, loved ones and allied health professionals face when asked to offer their opinion on treatment options. That which lies beyond the fear of litigation and power imbalance. It is truly an individual choice and responsibility, and there is no reason to seek approval of this decision as the price is your own mortality.

To chemo or not to chemo?

Advocacy of health treatment options for yourself is challenging at the best of times, but in the face of a cancer diagnosis, it takes bravery to select options that resonate with your spirit. I had been struggling on a philosophical basis with the recommended treatment of chemotherapy from the moment the words were entered into the air.
I undertook a literature review and read all information that was provided by the specialist and the hospital. I reviewed the regime of proposed chemotherapy drugs and their horrific ‘potential’ side effects. I read many blogs written by women who had been diagnosed with triple negative breast cancer and had undertaken chemotherapy. I read comments by women who chose to not undertake chemotherapy and lived well  over the statistical 10 years target, some up to 27 years post diagnosis. 
I read about ‘chemo brain’, a state of cognitive confusion and lack of short term memory recall that occurs for some patients during chemotherapy and for many remains permanently. This renders the individual unable to work, drive, read or conduct conversation as recall is limited. There is no screening capacity prior to undertaking chemo and the damage of the chemotherapy process is not necessary a cumulative one and at any stage of the cycles side effects occur on an individual basis. There are lists of common side effects for each drug, with fever, low white and red blood cell count, nausea, vomiting, diarrhoea,numbness and pain in hands and feet, constipation, hair loss and nail loss and mouth ulcers, making the top ten. 
In the mine field of decision making, Greg and I attended the pre-chemotherapy session where a cheery nurse informed us of the process and provided a folder of information. I sat in a chemo chair, terrified and vulnerable while responding to questions and listening to a constant flow of words which explained the process and patient expectations of the chemo experience. We left, shattered and frightened. I felt an overwhelming fear of surrendering my soul to the medical machine, which failed to individualise my treatment options but relied on statistical data to determine my odds of survival and reoccurrence.
My father, who turned 97 in November 2012, has lived his life, post bowel cancer with strict adherence to the principles of the body system. He has counselled, lectured,shared, imparted and been the media darling of ‘healthy ageing’. His mantra includes organic flour, low fat, high fibre, small portions of fish or chicken and no stimulants and artificial sweeteners. He often referred to white sugar and white flour, as ‘white death’.
Intuitively, the treatment option of chemotherapy and radiation, which would with chemo, reduce my body PH to 2, highly acidic and with radiation, to shrivel and destroy cellular structures at the localised site of the tumour lesion, did not sit comfortably with me. These options maybe the right choice or the only medical model solution to reduce tumour size prior to surgery or for palliative care at the end of life.
My cancer had been removed and it had not spread to the sentinel node or to any lymph nodes. Chemotherapy was offered as a method to ‘mop’ up cells which may have travelled to other sites, and a methodology to reduce odds of reoccurrence.
The 20th December was to be the first day of chemo treatment and we arrived at the oncologist’s to discuss my blood levels taken as a base level. Ironically we both had forgotten the requirement that I have an ECG which is completed prior to surgery in order to ascertain potential heart problems so that the regime of chemo drugs can be altered or monitored for potential damage to the heart muscle. The oncologist checked for previous related heart conditions and was satisfied to proceed. I raised the issue of chemo brain and she looked for a recent yet fully published clinic study which found 50 % of women undertaking chemo had ‘chemo brain’ three years after treatment had ended. I decided not to undertake the treatment and cancelled the procedure in the oncology ward and made a subsequent appointment in the 3rd January 2013 to review options. 
Today, Greg and I visited my general practitioner to update her regarding our decision to not undertake six rounds of chemotherapy but to instead undertake a bi-lateral mastectomy to remove all breast tissue. She was very supportive and wrote a referral letter back to my surgeon for a bi-lateral mastectomy. At this stage, I will not be returning to the oncologist for chemotherapy. 

New words for a new world

The following weeks after diagnosis was a whirlwind of appointments. Firstly with the breast surgeon, anesthetist,lymphodoemia clinic and my general practitioner. The breast surgeon discussed the pathology report of the core biopsies, examined my breasts and lymph nodes, drew on my right breast with a marker, announced my weight and height and recommended a lumpectomy followed by 6 weeks of radiation treatment. He indicated that presence of cancer in the lymph nodes would dictate if chemotherapy would be required.
In order to ascertain this, I would need a lymphocentragram, the injection of blue dye into my nipple and this would travel through my lymph system firstly into the sentinel node, which cancer cells may have migrated to. In addition as the tumour lay deeply in the breast and had been difficult to locate in my large breast, a hook wire was required to be inserted prior to the proposed operation. We paid, gathered the plethora of instructions and paperwork for the upcoming day surgery admission and when downstairs for a blood test. I had heard about 25% of various strands of information and fixated on trying to remember the new words like lymphodoemia and lymphocentragram.
I attended the anaesthetist’s rooms, whose opening comment was to determine if there would a gap in my private health insurance. He checked my weigh and measured my height. I noted the lack of personal photographs and a ringless finger. His parting words were that it was not my fault that I had cancer. I consoled myself that I needed only his expertise not his compassion and limited conversation occurred between ‘hello’ and the application of an anaesthetic.
I attended the lymphodoema clinic at Solaris Care along with a room full of women, some with husbands, friends and daughters. I had given Greg the day off hoping in the normal course of his job that he would find some relief from the tsunami of diagnosis. The delivery of information was presented in a sequential manner with opportunity for interaction between waiting for individual lymphodema test. One woman in her fifties in the third cycle of chemo, recounted her current state along with medications for anal, vaginal and oral ulcerations from diarrhoea and thrush and her lack of appetite and nausea. She wore her baldness without shame in this forum demonstrating that the community based resource created a safe space for individuals undergoing cancer treatment. She managed to freak both myself and another patient under the care of my surgeon.

Who started the cancer clock?

The great white screen beckons as I join the millions of iPad users, to record my journey. I have been in two minds regarding the need to purchase this ‘toy’ as I referred to it, however my recent health diagnosis has provided some perspective on, the art of living in the present.
Prior to my recent 51st birthday (6th October) I was contacted by Breast Screen ACT by phone, as several reminder cards had been returned to their office. In 2010 I had moved back to WA, and in the advent of moving and commencing another high level position in the public service, I had neglected to inform the clinic of my change of address. The phone call from the Australian Capital Territory (ACT) breast scan service reinforced my intent to have a mammogram and Pap smear, as a present to myself. I had had my first mammogram at 49 and my scan had been clear. I informed my female workplace administrative team of my intent to encourage discussion. Several comments questioned both my timing and the notion that these two uncomfortable experiences should be classified as a ‘gift’ to oneself. I disagreed.
Around the same time, I had a compelling desire to locate a new GP in the regional city of Bunbury. I had no evidence for a sense of urgency just an overwhelming belief, that I would need ‘someone in my space’.
Scanning the local paper, I saw an article on the newest doctor to join Brecken Health ,a Bunbury based multidisciplinary clinic. The article featured, a petite blonde haired doctor in her early fifties. I booked an appointment to discuss some post menopausal issues that had been troubling me. I also booked an appointment for a mammogram at the Bunbury Breast Screen van located at the St John of God Health campus that same week.
My new doctor commenced by engaging me with a series of detailed questions, the first of which centred on the current appointment, quickly followed by key questioning to determine my current health status. She asked if I had a recent mammogram and Pap smear. I recounted my intent, and made a future booking that week to undertake a Pap Smear. I felt confident that this doctor was governed by a professional and personal code of ethics and that she would apply a professional management of my health in partnership with my commitment to follow through on her recommendations and referrals.
I underwent the mammogram on the 5th October and returned to that afternoon for the Pap smear. While my results for the Pap smear were within normal range, I was contacted by Breast Screen, the following week requesting that I return for a second mammogram. This mammogram was undertaken by a different technician. It was excruciating, resulting in my vocalisation of ,’get it off, get it off’. The results were forwarded to my doctor who confirmed that a mass had been found and while this was distressing, recommended confirmation of the status before engaging in speculation. I was referred to Global Diagnostics for an high priority fine needle aspiration to determine if my suspicious lump was cystic. During this procedure, a core biopsy was progressed with 3 segments removed from the estimated 8 millimetre mass. This procedure was accompanied with local anaesthetic so while uncomfortable was not painful. The technican had great difficulty in locating and identifying mass with ultrasonic tools. The mass was located 2cm within my right breast positioned at 3 o’clock.
On 5 November, I made an appointment with my doctor, leaving work early. That day had been particularly challenging involving complex HR issues with several staff, the usual suspects, who had made counter-productivity and manipulation their workplace mandate and who were regular contributors to my stress level rising. Ironically it was these same people that needed to furnish my house with tokens of acknowledgement and appeals which bordered on the cry for absolution. I have learned the subtle art of boundary keeping. For many who felt such sunlight who did not deserve it, there has been only shade since my absence from work.
I wanted not to return to my administrative team that afternoon who I count as dear friends, if the diagnosis was not positive. my doctor enquired if I had got her message to come to the surgery, however I had not and had made an appointment as I was eager for clarification. She walked me through the steps that had led to the moment that we found ourselves. The words, ‘unfortunately it is cancer’ filled the small consultation room.
The shock was immediate, and the tears followed. I reflected concern for my workplace responsibility and that I did not have ‘time’ in my schedule for cancer. She firmly directed my attention to one challenge only, the fight to save my life. She called my new partner into the surgery and updated him. Under dark glasses, I signed and left the surgery. In the car park of the surgery, my partner held me tightly while I wept.

 

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