The Breast Days: One Year On

There’s a way a disaster throws people into the present and gives them this supersaturated immediacy that also includes a deep sense of connection. It’s as though in some violent gift, you’ve been given a kind of spiritual awakening where you’re close to mortality in a way that makes you feel more alive. You’re deeply in the present and can let go of past and future and your personal narrative, in some ways. You have shared an experience with everyone around you, and you often find very direct but also metaphysical senses of connection to the people you suddenly have something in common with.

(Rebecca Solnit, on On Being with Krista Tippett)

Vulnerability is the birthplace of innovation, creativity and change…[it] sounds like truth and feels like courage. Truth and courage aren’t always comfortable, but they’re never weakness.

(Brené Brown)

When we least expect it, life sets us a challenge to test our courage and willingness to change; at such a moment, there is no point in pretending that nothing has happened or in saying that we are not yet ready. The challenge will not wait. Life does not look back. A week is more than enough time for us to decide whether or not to accept our destiny.

(Paul Coelho)

 

Just over a year ago, Eva received her first dose of chemotherapy. Her next one was two weeks later on December 20th. Christmas Day 2016 was outstandingly depressing; she spent most of the day in a post-chemo fog, prostrate on the couch. I remember in the afternoon walking down to the veggie village with our 9-month old baby as our 4 year-old daughter stayed home and watched a movie on the sofa beside Eva. The heaviness was immense, exacerbated by the season. But even then, there was peace in nature. The grass was at its greenest before the long months of a Queensland summer took its toll. Our son crawled and bum-shuffled, fascinated by sticks and stones and the cool earth.

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Christmas 2016

So one year on, where are we along this road? Over the last months, Eva has re-read parts of the Breast Days of Our Life. She described it as providing a narrative and structure for her own personal experience of diagnosis and treatment of stage 3 breast cancer. The four months of chemotherapy are particularly hazy for her due to the cognitive effects of the cytotoxic medicine. She asked me recently if I had thought about writing anything on it again; I had, but also needed a break in the post-treatment period. We needed space to recreate and re-establish this new existence.

And life has gone on. Our daughter finished her first year of school, apparently unscathed by the experience of the last year (if her volume of speech and energy levels are anything to go by). She thrived and buzzed under the tutelage of her amazing prep teacher. She had mini-dramas with friends, grew stronger and more co-ordinated, and now is able to read her toddler brother his baby books.

Our baby is well and truly a toddler. He speaks first words in a mixture of Germlish (German and English). He propels himself headfirst into the swimming pool. He is doted upon by his older sister’s friends. He is engaging and smiling and affable. He shrieks with delight, and also with dismay when he is no longer allowed to play with the Christmas tree lights plug at the socket.

In the past month Eva has experienced more and more days where her energy levels remain equal and stable over the course of a day. She no longer feels like she must sleep as soon as Luca has a nap, for fear of not being able to make it to the end of the day without feeling like death. She continues to process her new body which has changed in so many ways. She has gone from a breastfeeding mother of an 8 month-old to a menopausal 37 year-old whose hair is no longer even the same anymore, who has had both breasts and her ovaries removed. She has pragmatically and bravely faced questions and potential issues around her new identity, and asked herself if it even changes anything about her identity? She is re-establishing a life which she had just settled in to one year ago – enjoying being a stay-at-home parent looking after a baby – to questioning whether she ‘should’ go back to work, or should she stay at home with a rambunctious toddler? Her feelings change but she has found some settledness in the thought of letting her body and mind continue to heal for the coming year at least without having to consider re-embarking on her professional journey again. The comorbidities of breast cancer survivors are now well-recognised in the literature; it is difficult and tiring to try and explain to people why she is not yet herself.

We attended the ‘Club Chemo’ Christmas party, organised by her medical oncologist for 300 of her patients and their families/support people. It was a good, if strange, experience. Eva appeared to be the youngest in the room, with perhaps a few more patients in their forties. But it was a good reminder of how life goes on and people continue to return to this Christmas party year after year.

But we hold within us the tension of two potential futures; one is where Eva lives to old-age and dies of a non-cancer related event and has nothing to consider again in relation to her experience of cancer. And the other option is of a recurrence, which, at present, is a terminal diagnosis. Metastatic breast cancer has no cure, although people can live for years with ongoing chemotherapy and radiotherapy to reduce the cancer burden.

I remember in one of the first blog posts I stated rather emphatically and probably aggressively that I did not want to view this as a heuristic or didactic process. I would never condone portraying any difficult experience as being there primarily as a reason to teach or instruct. However, there have been surprising and noticeable lessons gleaned over the past year. Here is a distilled version of them.

  1. Uncertainty is endemic to the human condition

So much of our life is concerned with trying to reduce uncertainty and increase security. (It’s interesting that I used ‘security’ as a synonym for ‘certainty’.) Starting with dealing with a crying baby, we are unnerved by not knowing exactly why they are crying. As we grow older, education is perceived as an investment in the future to make certain of financial stability and opportunity in adulthood. Financial stability is one of the hallmarks of how we define security and certainty; are we financially ‘secure’? Are we financially ‘independent’? Whole sectors are based on identifying variables which are a potential threats to this source of security. And it goes on and on. This year’s experience of cancer has thrown the uncertainty of multiple areas of our life into a harsh light of scrutiny: health, finances, employment, relationships (both within and outwith our family), mental wellbeing, and the unknown future.

But out of this uncertainty has come growth and opportunity: our relationship is better than it has ever been; we’ve experienced how resilient we are as individuals, a couple, and as a family; we’ve experienced overwhelming love and care and generosity from others; we’ve learned to ask for help from others; we’ve realised new areas of strengths, and have framed our weaknesses within a more balanced perspective; we have experienced how vulnerability has begotten courage, which has led to strength. We have learned to be less unnerved by the vicissitudes of life, and to accept that suffering is part of this beautiful, unpredictable, rich, and rewarding life. Our blessings are inestimably more than the trials of millions (billions?) of others.

2. Perhaps people are mostly kind, good, and caring?

The premise of our individualistic western societies is that we need to care for ourselves first, which then extends to our immediate families. Thereafter, it can be a free for all. We have outsourced care for extended family to other organisations and the state. The corporate sector is beginning to wake up to the fact that people are no longer driven purely by financial reward, celebrated success, or prestige. People require purpose and meaning in their occupations to maintain feelings of contentment and connection. One of the main ways of doing this is by identifying ways in which an organisation is helping others. Personal experience through our upbringing and later life experiences can darken this view. Religious beliefs in some circles are based on the premise that humans are ‘fallen’ and innately sinful and lacking goodness. One of our experiences, alluded to above, is re-experiencing the goodness of others. The presence of demonstrable expressions of love and care was a shocking reminder of how much I did NOT expect this from people. We feel irrevocably changed by others’ openness and thoughtfulness. Rebecca Solnit (above) describes this as ‘this supersaturated immediacy that also includes a deep sense of connection’, this ‘violent gift…that makes you feel more alive.’ We do feel more alive, more purposeful in our day-to-day existence. We’ve started learning self-compassion, seeing the uselessness of perfectionistic, fearful, driven tendencies. Imagine how we would change our worlds if we treated ourselves and others with the expectation of kindness, goodness, and altruism?

3. Vulnerability, strength, courage, and purpose are closely related

We tend to idolise overt displays of success and achievement. We ascribe characteristics of strength and courage to people who seem to have reached significant states of wealth, fame, or even ‘nobler’ pursuits, such as personal development or artistic endeavour. But we are slow to recognise the traits which stem from vulnerability – openness, transparency, genuineness. We tend to downplay that courage is not always comfortable, as Brené Brown says, and that vulnerability is the birthplace of innovation, creativity, and change.

It’s hard to encapsulate how the vulnerabilty we have felt and displayed this year has changed us and opened up new opportunities, because it is still an emerging and ongoing process. But it’s undeniable that our willingness to change, despite not feeling ready (when are we ever ready for disaster?), is endowing us with a greater sense of expectancy and excitement for the future, no matter what that may be. Like Paul Coehlo says, the challenge will not wait, and life does not look back.

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Tit tattoos and apricot kernels; vulnerability in action

‘The Way of Openness is about embracing and welcoming and being curious about whatever is in front of us, staying in touch with our feelings, and being open to the constantly changing nature of what comes at us. This Way is not easy, but neither is the life of running from discomfort and uncertainty, as we’ve seen. This Way takes practice. It takes courage. It takes love…

In the end, this is about whether we want to go through life running from what we find and seeking comfort, or whether we’re going to find the courage to be open to everything, to finally be free of the running. In the end, we find that there was nothing to be afraid of after all. It’s a wonderful place to be, this changing, uncertain, uncomfortable and miraculous world.’

Leo Babauta, Zen Habits

My wife is on day three of her fifth round of chemo for breast cancer. She started a new type of medication this week. We had gotten ‘used’ to the vague pattern of events with dual chemotherapy drugs she received for her first eight weeks of treatment; nausea and headache, tiredness and sleeplessness, loss of appetite and lethargy. We were starting to get a grip of the pattern of the fourteen days between each round of chemo.

And this week it is all change, again.

Now she is also thinking ahead to surgery. Single versus double mastectomy. Reconstruction or flat or prostheses (she’s considering tattoos over the scar(s); I’m thinking two large owls, with ‘two-tit-tattoo’ written in large letters for when people stare on the beach.) And she’s trying to figure out what the post-operative period will be like with a 14-month-old the size of a bull mastiff running around. And what will six weeks of Monday to Friday radiotherapy sessions be like at the hospital thirty minutes away? And how will menopause be? And will she miss her ovaries? And, and, and.

And so we find ourselves grasping at straws, seeking for definites in a world of shifting shadows.

For me, this period of change and chaos has thrown up a lot of questions about meaning and direction. Our two children, a five year-old who has just started school and a ten month-old just starting to walk, are a grounding, stabilising presence in their vivaciousness and neediness and joyousness and uninhibited expressions of emotion. (This morning, Friday 6am: it is the end of the third week of school and tiredness is evident; I had to console my distraught daughter who was unable to create a haute couture dress from pieces of felt for her doll. And then we embarked on this masterpiece, thank you very much):

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This enforced staying open is necessary and good. One of my favourite writers, Brené Brown, in her book Daring Greatly, says:

‘Leonard Cohen writes, “Love is not a victory march, it’s a cold and it’s a broken hallelujah.” Love is a form of vulnerability and if you replace the word love with vulnerability in that line, it’s just as true. From calling a friend who’s experienced a terrible tragedy to starting your own business, from feeling terrified to experiencing liberation, vulnerability is life’s great dare. It’s life asking, “Are you all in? Can you value your own vulnerability as much as you value it in others?” Answering yes to these questions is not weakness: It’s courage beyond measure. It’s daring greatly. And often the result of daring greatly isn’t a victory march as it is a quiet sense of freedom mixed with a little battle fatigue.’

This week I’ve been experiencing some of that quiet freedom along with battle fatigue. It started off with a couple of days of confusion and feeling aimless and wandering in a couple of areas in my life. Perhaps not aimless but struggling to choose one way out of about five options, and despairing at this new area of uncertainty and potential change. But then small glimmers of freedom started appearing.

I spoke with a guy whom I respect who is at the forefront of yoga in Australia – Duncan Peak. He is a world-renowned teacher and comes from a military and footie background. I reached out – an act of vulnerability – and he responded. I was reminded that through sharing and connection, when we are just ourselves in all our plainness and lack of specialness, the goodness and selflessness in others often presents itself. I think the opposite is true; when we remain closed and suspicious and fearful, or inauthentic and defensive, we do not elicit the kindness and love of others.

A few days later a neighbour – whom we’d never met before – turned up at our door. She had come across this blog and wanted to share with Eva her story of breast cancer. She spoke openly and honestly, with great humility and sensitivity. Again, vulnerability here lead to vulnerability and connection in person.

About two months ago I sent one of these blog posts to the Huffington Post asking about the possibility of it being published. After Elephant Journal published one post, I didn’t think any more of it. Until I received the email from Arianna Huffington yesterday saying she’d like to publish it. Again, this openness and vulnerability led to outcomes which were simultaneously scary and exciting.

Doors creep open, new friendships are born, deeper connections are made as we are curious and accepting and reaching out to the world around us.

It’s an ongoing struggle to accept the unknown, not be attached to definites, and to simultaneously approach this whole tumultuous experience with an attitude of curiosity and vulnerability. It is so much more tempting to close up shop, become hard, put on our game face, and attack this in a military-style onslaught of energy and aggression and overt shows of rejection. It’s humbling to remain open to others, the kindness and love, and even the unsought after advice (nice article sent to me this week advocating apricot kernels over chemo and radiotherapy because tumours love sugar in apricot kernels and then the cyanide in the kernels is released and kills the tumours. Who knew?)

Openness, vulnerability. Two fuzzy words with edges of steel. Nice concepts which are painful, at times, to embody. My mantra during a yoga session this week was:

I inhale strength and life;

I exhale fear and confusion.

Which could be rephrased:

I inhale true vulnerability;

I exhale disconnection from my self and others.

Wishing you connection, openness, and authenticity in your journey of vulnerability.

2017: How do we live by our values this year?

In every life there comes a point when you have to make a decision about how you will live.

It is this broken road with pitfalls and sharp turns and unexpected traverses that has brought me joy and adventure.

– Alice Walker

 

Something Eva and I have spoken about at times over the last weeks is trying to continue living by our values, even when life appears to be sub-par on some fronts. This has often been in relation to parenting; aiming to still parent by our values even if energy is lacking, impatience is more prominent, or our general tolerance of little people is less than usual.

This morning Eva was discussing about aiming to ‘make friends with discomfort’ in 2017. For her, the discomforts are many and multifaceted and are not limited to the discrete physical symptoms associated with treatment for breast cancer. The complex psychological effects of living with this illness and its treatment continue to surprise us, as well as the inevitable emotional instability associated with tiredness and stress and anxiety. The previous night we sat through a monologue by a well-meaning gentleman who was recommending alkalinated water, manuka honey, and purple carrots (no joke) for the management of cancer. Now, I’ve no issue with alternative medicine, but I do have issue with a lack of evidence for a treatment. I drank at least two glasses of wine during this, and our host fortunately then brought out the port. Eva listened very graciously whilst I imagined creative ways of hiding purple carrots about his person. Might have been a kick-start for him making friends with discomfort.

At breakfast Eva and I discussed further this making friends with discomfort and amended it to making friends with vulnerability and discomfort. The last weeks’ journey has been one of vulnerability in different ways. The sensation of being vulnerable to a life-threatening disease process; the vulnerability towards treatment; the vulnerability of our family to this massive emotional and practical upheaval; the emotional and psychological vulnerability we have all felt as individuals; and Eva’s more complex and deep-seated vulnerabilities covered in other posts about how this process of cancer will change many things about her (see A head of hair, a breast, two ovaries, and a slice of identity; Cancer’s haul.)

Another understanding of vulnerability is how we have related to others through this. This blog has been a vulnerable process, sharing intimate and partially-formed and conflicting and uncomfortable thoughts, feelings, and responses. There was the paradoxical wish to protect Eva and our family and close ranks, with the desire to be open and honest and share the intricacies of this process, as best as we were able. We recognise our need to be open and to involve others, but this necessitates vulnerability as we accept help and kindness and love and care, of quite mind-blowing proportions. I have tried to understand why it is, at times, uncomfortable to accept the care of others. The superficial answer would be pride; it is at odds with our individualistic and self-protecting society. But I don’t think that is the over-riding feeling for Eva and me. I think the vulnerability partially relates to receiving something that we don’t know if we will ever be able to ‘repay’ to others, and accepting that it is not something that necessarily should be repaid. We have tried to be conscious that people enjoy caring and giving and showing their concern in the midst of this hairy bollocks situation, and do not want to disrespect them. (Doesn’t that in itself sound snobby and self-protective? ‘I allow you to help me so that you receive the benefit of not feeling disrespected.’ Boak.)

The fact is, for some people, and we include ourselves in that cohort, it is just scary to accept that people might simply be good, kind, loving, compassionate, generous, and, frankly, beautiful. We grew up with an oft quoted Bible verse ‘call no man good’, and it was instilled in us that we were all born in to sin, we are sinners who are inherently evil and deserving of death, and that soon God will destroy the world and take a chosen few to the new Jerusalem whilst the rest burn in the fiery lake for the rest of eternity.

Funsies. Quite the way to form the world view of a child, regardless of what one believes.

I know it is not easy for many to unquestioningly accept kindness from others, but it has been a great lesson and experience for us. It has demonstrated to us the strength in being vulnerable; as we reach out to others and they respond, we feel supported and not alone and cared-for. We have asked for and been offered help, and it has been given unreservedly.

This evening I was thinking about values in relation to something else. I came across a core values list (http://jamesclear.com/core-values if you want some ideas) from which I chose six which have been significant for me over the past two to three years, but which I want to cultivate and focus on living by in 2017. They are:

  • authenticity
  • balance
  • compassion
  • determination
  • inner harmony
  • optimism

Authenticity to continue being open with others to engender genuine relationship. Authenticity to acknowledge the discomfort and vulnerability, to work with it, and not to repress it. Balance in my attitudes, views and opinions. Listening to and wanting to learn from others (purple carrot man excepted (joking, he was very nice, but it was late, I’d drunk too much, and we weren’t up for stopping chemo and surgery for dodgy coloured root vegetables)). Emotional, psychological, spiritual, relational and physical balance. Compassion for my wife, my children, people I meet in the day-to-day, people who have so much less safety or resources than me, and so much more suffering. And some for myself too, as it makes sense that unless we are compassionate towards ourselves with our own weakness and foibles and character deficits, we will find it difficult to show the same to others. Determination to care for others, to pursue my goals, to work hard at whatever I’m doing, to believe that I can make a difference. Inner harmony obtained by paying adequate attention to physical, spiritual, emotional and psychological health, and living by my values in my relationships, job, and creative endeavours. And optimism, that people are, generally, kind and good and thoughtful and loving. (Don’t worry, I’m not deluded.)

Wishing you all perseverance and hope in 2017; the commitment and strength to live by your values; and a lot of success with purple carrots and a mobile water alkalinator (I know someone who can get you one).