Hello from the other side

I just said goodbye to Eva at the doors to the anaesthetic suite. Next time I see her she’ll be a kilo or so lighter with a different body shape. 

Last night we went out for dinner to a French restaurant. She looked beautiful  (as always – see above). Time alone together during this madness. A last supper for her boobs, so to speak. We laughed a lot, and spoke in our usual intense manner – one of the things we first bonded over aged 17 and 19. We put the world to rights and analysed ourselves and others and our french fries and profiteroles. Afterwards we walked on the beach in the dark.

We’ve talked, joked, commiserated and pontificated a lot about breasts the last months. We’ve philosophised about their cultural status, their biological use, and their symbolism. We’ve probably looked at breasts in a new light; two (usually) lumps of tissue designed for mammalian nurturing, but which vacillate between being objects of sexual desire and repositories of a disease which affects millions of women each year.

We’ve considered why the removal of breasts is such an emotionally fraught and psychologically complex process. We’ve talked about reconstruction and its implications.

And for all this thinking and pontificating and trying to exactly define the perfect biological, cultural, social and sexual nature of boobs, it still hasn’t lessened the complexity and inevitability of today.

Eva has approached it with bravery, pragmatism, optimism and thoughtful deliberation. As with this whole process, she does not struggle to identify all the positives and good things in her life and the excellent care which she has received in our privileged, wealthy healthcare system. The cognitive aspect of this illness and its treatment has been the less challenging realm of experience.

The challenging part – as with most of human existence – has been the emotional experience accompanying it. Her feelings of uncertainty and lack of control and worry and anxiety. The confrontation with mortality and its effect on those closest to her. The impact on her role as a mother. The possible effect on her sense of womanhood. The change in her physical health and fitness and her response to not feeling like the fit, strong person she was. 

And then you add in the children’s experience of her illness, my experience, and the collective experience of our family unit. It would make for one challenging spider diagram.

This blog has been primarily a record of my own emotional and psychological response to this process. At its centre is Eva and her disease process, but I’ve never wanted to be a spokesperson for her. It has held a narrative for her for when the processing of all this complexity has been difficult for her, and a form of order-making for our family. I, perhaps naively as a doctor and human, under estimated the ripple effects of a serious illness on the spouse and immediate family members of a patient. I feel guilty that perhaps my experience has been foremost through this writing; but I make no apologies. It has, somehow, been helpful for us all (even if our children are not aware).

And in a few hours, once she wakes up, the next stage will begin. Perhaps for Eva this will be the most defining moment of her illness. Not defining of her, but her experience of illness. This is irreversible, visible and scarring. It’s also, hopefully, definitive and curative. 

This beautiful lady was laughing until the last minutes. We took photos of her in her fetching hospital one-size-fits-all paper undies which could fit about four of her in. There were tears, and she looked vulnerable and small as she was wheeled away down the hall in the vast hospital bed. As she was pushed by a friendly fellow in scrubs, and we rushed to keep up with the nurse marching ahead of us, the Queensland sun shifted and bounced past the gum trees through the windows on to the tears on my love’s face.

A head of hair, a breast, two ovaries, and a slice of identity; Cancer’s haul.

This afternoon I shaved Eva’s head.

Her hair started falling out within hours of the second round of chemo on Tuesday. It was preceded by her scalp becoming exquisitely sensitive. Within hours she felt like her hair was ‘lifeless’ and just like an ‘attachment’. The last three days have been difficult for her as she has been picking clumps of hair off her arms or shoulders or neck. An eye-opener today was when our nine-month old son grabbed a fistful of hair out of her head. At this point Eva decided she wanted it shaved.

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For some reason, at some point in the past I had imagined Eva with short hair (probably catastrophising about her having cancer knowing me). And she rocks it just like I had envisioned. The photo doesn’t show it, but it is already patchy. We know that this is just another temporary step; a vague attempt at alleviating some of the inevitable inconvenience and discomfort that lies ahead. When Luca saw her he was completely unperturbed. Mia (4) came home from the neighbours and immediately said that it was ‘beautiful’, and that she wants hair this short too. She said it looked like a zebra because of the areas of patchy white amongst the dark hair. She was on the verge of tears in the shower when I said that we would leave it a couple of months before we consider cutting her hair shorter…

I decided to shave my head, too. Partly to demonstrate solidarity with Eva, but also because my personal grooming has been somewhat lacking the last weeks whilst being off work, and I was starting to look a little too mountain-man’ish. For the first time in my life I wore a cap when leaving the house yesterday purely because my head looked like a bush.

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The solidarity shaving may seem cliched and/or pointless, but when she sat across from me at lunch and said she wanted to shave her hair as it was ‘just depressing’ picking up hair all the time, I had a strong sense of not wanting her to feel more alone in this. It is her experience and journey, but we and our children are inextricably linked in it. I find the thought awful to imagine her being alone with overwhelming feelings or thoughts or fears; and it’s my place to share what I can with her, and accept what I cannot.

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The day before Eva’s second round of chemo, the gynaecologist phoned. He had inserted Eva’s Mirena (a hormone-releasing coil) a few months ago, and we had wanted to discuss with him whether this would have any implications for the prognosis of the cancer. The Mirena (if I remember correctly) releases a progestogen (synthetic progesterone); Eva’s cancer is largely insensitive to progesterone but is highly sensitive to (i.e. its growth is promoted by) oestrogen. He said that the Mirena would not be a problem, but that he was going to discuss with Eva’s oncologist the benefits of removing her ovaries. This is to remove the source of oestrogen, and to reduce the risk of Eva developing ovarian cancer in the future. Breast and ovarian cancer can share the same genetic mutation (BRCA1 and BRCA2). Getting breast cancer at the age of 36 makes it highly likely that Eva carries one of these genetic mutations. Likely from her (absent) father (bastard). (Have I mentioned that he’s not been around for 32 years?). (Bastard).

We saw the oncologist yesterday who agreed that a bilateral salpingo-oophorectomy (ovary and fallopian tube removal) would be prudent.

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I’m not well-qualified to discuss the components of female identity, but as a fellow human being who believes that maleness and femaleness are perhaps not as polar as some would believe, I can definitely give it a clumsy shot.

Eva has been very up-front since she was diagnosed about the physical implications of treatment: mastectomy, nausea, hair loss, tiredness, and deconditioning for a start.

Some things have come as a shock. She had not heard of lymphoedema before, and the potential for this should there be damage to the lymph drainage of her right arm when the surgeon removes the lymph nodes in her right axilla. It dawned on her, slowly, that chemotherapy and oestrogen-blocking medications had the potential to render her infertile and give her an early menopause, respectively.

But now the finality of having her ovaries removed is sinking in. Last year she had her left fallopian tube removed when it ruptured due to an ectopic pregnancy. A few weeks after the emergency operation she received a call from gynaecology saying that the pathology results confirmed that it was a fetus in the tube which had caused it to rupture. Until that point, Eva had not given much thought or emotion to the ‘lost’ pregnancy; she had been more absorbed with how her physical health impacted her ability to interact with her very boisterous (then) three year-old daughter. The unexpected phone call and description of a fetus, and the image of it lying in a sterile kidney dish in a pathology lab was confronting and left her in tears.

Now, her ‘biological’ clock has been shunted forward by fifteen or sixteen years or so. She will lose her ability to reproduce, her menstrual cycle, and the influence of oestrogen. She will probably need to start medication for bone protection to reduce the risk of osteoperosis. She will require another invasive procedure to remove her reproductive organs. All of which will be on the back of having had a breast and axillary lymph nodes removed, and radiotherapy, and probably still being bald. And we’ve not even considered a double mastectomy for prophylaxis, or breast reconstruction. FFS.

What do these external and internal changes do to someone’s identity? What do they mean for someone’s gender identity? What are the potential consequences for a sense of femininity which a woman has had all her life? How, if it were a man, would he feel even having his pectoral region and nipple removed, or his testicles removed as a prophylactic measure? I think men may be better able to imagine these implications for themselves, even if it is difficult to empathise with what a woman goes through.

I don’t know what all the implications are for a woman, and it would be arrogant for me to presume that I did. I don’t think they necessarily need to change one’s identity, but I think the reality is that when you look in the mirror every morning, you’ll be very aware of the absence of a breast (or the presence of a prosthetic breast, should she decide that one day). You will be aware of not having a period every month. You will be physiologically aware of not having this pulse of oestrogen. You will be aware of the sociocultural stigma around being a young woman with no hair.

I think Eva is secure enough that it will not result in any sort of identity crisis; but I think it would be naive to presume that her (or anyone going through these rapid, unheralded, multiple changes) would not be challenged to adjust to this physically – never mind emotionally and psychologically – changed person. Regardless of whether we had finished our family or not, a young woman is going through an iatrogenic (medically-caused) menopause years before she ever imagined. Her body is being mutilated (her words, not mine); and yes, of course she knows that without it being ‘mutilated’ she would die, but it does not alleviate the grief or loss for what was or what could have been.

So I suppose this is some sort of eulogy. We are very aware of the gift of medicine that is allowing Eva to be treated so well and completely and efficiently in this blessed and wealthy and generous society in which we happen to live. We are thankful for our two amazing children.

It is goodbye to that thick, glossy, long hair which I fell in love with at 17. It’s goodbye to a breast that has fed two children and has marked Eva’s passage through adolescence and young womanhood. It is goodbye to that reproductive stage of Eva’s life, and that somewhat magical and mystical cycle that is responsible for producing the human race and causing women a pain in the….well, butt isn’t very accurate, so uterus – every month. It’s goodbye to body parts and hormones and a certain appearance.

And this is sad and painful and unexpected, despite knowing it is in the name of a greater good. It deserves to be considered and acknowledged. In this surreal process which has swept us up, I want to stop and say that Eva, and any woman (or man) going through a process like this should have the right to grieve and feel loss as they move forward.

Shit. This is shit.

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