Twelve Days, and Girls with Short Hair

‘So you’re getting what’s called dose dense chemotherapy. That means you’re getting it every two weeks instead of three, because you’re high risk. You’re high risk because of your age, the size of the tumour, and because it has spread to a local lymph node. So they want to get on top of it quickly, knock it out, you know?’

In the space of twelve days we went from thinking that Eva was a fit young woman with no major health problems, to starting chemotherapy. The last week had been a liminal period; a waiting space where we were variously anxious, incredulous, sad, angry, and, interestingly, almost embarrassed or guilty at all the attention we were getting. As soon as we made Eva’s diagnosis of breast cancer common knowledge to our friends and colleagues, we had received floods of offers of food and babysitting and cleaning and wine and visits. It felt incongruent with the healthy person we were seeing before us. We found ourselves thinking, maybe it won’t be so bad at all and we’ll have all this food and help, and Eva will be fine, and we’ll have to make people meals for the next six months to apologise for all the drama.

Chemo was perhaps partially designed to remind people with cancer that they are not well.

Chemo nurses are its harbingers.

The chemo nurse took her time to talk us through all the potential side effects and complications of chemotherapy. She was sensitive and kind, but I could see Eva’s shoulders drooping further as the conversation went on: nausea, vomiting, bony pain, sensory loss to fingers, indigestion, dry mouth, mouth ulcers and cuts, thrush, mood instability with the steroids, weight gain with the steroids, lymphoedema with lymph node dissection (from surgery, not the chemo, but it’s good to cover all bases), scarred veins, risk of sepsis, increasing tiredness over the 16 weeks of treatment, etc etc. When the nurse went away for a couple of minutes, Eva looked at me with tears in her eyes, whilst laughing incredulously, and said ‘for f**k sake!’ – an increasingly common phrase in our house (out of children’s earshot) over the last two weeks.

The most challenging aspect for her was the potential for her to have to limit physical contact with her children if and when they have some sort of infection (e.g. common cold), due to the risks to her, especially at certain parts of her chemo cycle when her white blood cells (responsible for fighting infection) will be severely impacted.

We sat throughout the infusion in a bit of a daze. At first we laughed almost hysterically; a neat table was set up for us with sandwiches and lamingtons, and the other patients (all at least twice Eva’s age) looked on in a slightly bemused fashion at this young couple laughing and having the nurse take photos of them. The nurse couldn’t remember the last time they had someone Eva’s age.

The first medication, doxorubicin, instantly caused some sort of mild local reaction about a quarter of the way up her arm from the cannula in the back of her hand; her hand became warm and the skin became red and patchy and very sensitive to touch. This was alleviated by ice packs and reducing the rate of the infusion. It put Eva on edge, though, who has, historically, tended to be exquisitely sensitive to a lot of medications.

The second infusion, the cyclophosphamide, did not cause any adverse effects.

In addition to the three oral medications that Eva had taken that morning at home to prevent her developing nausea, she was also given a further two intravenous doses of anti-emetic (anti-vomiting) drugs, including more dexamethasone (a steroid). She found this psychological component of being on huge quantities of medication, a challenge in itself.

She had an unsettled night and has been feeling pretty average all day. She is experiencing intermittent nausea but no vomiting and has been very tired all day, spending a lot of time in bed. I gave her the pegfilgrastim (G-CSF – stimulates the bone marrow to produce more white blood cells) to reduce the period during which she is neutropaenic (low neutrophils, the main type of white blood cell involved in the initial immune response). She will get this twenty-four hours after every session of chemotherapy.

She had a number of episodes of feeling very uncomfortable and strange, with one more severe episode; she described feeling like her face was swelling up, the bones in her face being sore, as well as tightness in her throat and chest. She had to stand up and leave the children in the middle of looking at a book with Luca. It’s difficult to know what to expect, what’s normal, and what’s potentially dangerous. I felt her heart rate, and it was not too fast, and it’s too early in treatment to worry about massive infection, but I was concerned about blood clots or a delayed reaction to the chemo. But it settled with lying down and Staksaks – rice bags which can be heated or cooled to ‘be put on cuts, sore bits, sore boobs, or frozen and thrown at doctors’ (thanks Paula :-)).

So, it has begun.

…………………………………………….

Yesterday a photo of our daughter appeared on my Facebook page from one year ago. Underneath I had written,

When we made the decision that we wanted to create another human being, we were aware of the arbitrariness of the choice, in some ways: is it reasonable to birth another creature just for our own fulfillment? What about the hardships of life which she will have to experience?

Some days are trying, but we could never have imagined the joy that lay ahead. It still seems slightly selfish sometimes; the joy and fulfillment she gives us is inestimable. She has our hearts.

And now, to experience that all over again.

At that time, Eva was about five months pregnant with Luca. It’s so bizarre to think that the cancer was already there, lost amidst the normal hormonal changes of pregnancy which Eva was experiencing.

We see now, early in her life, and perhaps more so for her than for her baby brother, how Mia is having some experience the hardships of life. The reminders of Eva’s ‘strong medicine’, and how tired she is. Dad being not as energetic or as patient as usual. She wet herself a couple of times over the past couple of days – something which still happens occasionally – but I could see Eva struggling not to read anything into that. Is she regressing? Is she very unsettled and we just don’t realise it?

Our major aim in our relationship has been to create a family where our kids have a certain type of stability and peace which we value highly: dependable, emotionally stable parents; consequential and thoughtful parenting; no exposure to alcohol abuse or domestic violence; observing two imperfect parents , who are best of friends, work through the inevitable issues that are present in any long-term relationship; no major financial worries; no exposure to mental illness which has not been treated and addressed as much as is possible.

These last two weeks have been a major shock to our ideals of stability and peace and lack of worrying, which has very much unnerved us. We know, cognitively, ‘how resilient kids are’, but we also know from personal experience and our professions as a teacher and psychiatry registrar that early life events, the home environment, and parental well-being have a major and life-long effect on children’s development.

But then, she is her own reassuringly energetic self. She still chats away and sings as she plays. She hides behind the door or under the bed when I come to say goodnight (her final attempt at creating a game out of the usual evening routine). She still wants to jump in the pool, and eat cake (thank you, Abbie), and play hide and seek with her friends when she arrived at kindy. (I was a very bad seeker; kept getting distracted talking to people. But the kids just think I’m taking long because they’ve hidden so well.)

All the usual and normal conflicts of parenting continue. Am I too strict? Am I too lenient? Does she need more routine at the moment, or should we slack off? Is she unsettled by all these people coming round and dropping off (amazing) food and talking to us and hugging us?

We had been wondering how to discuss Eva’s approaching hair loss with her, but a natural opportunity presented itself in the car yesterday. A younger girl in her ballet class crossed the road with her mum in front of our car as I drove her to day care:

‘There’s Lucy’, I pointed out to Mia.

‘Oh yeah. She’s got short hair, but she thinks she has long hair.’

‘She’s quite a bit younger than you, isn’t she? Maybe she doesn’t know how long long hair is. Do you think girls can have short hair?’

Silence.

‘Girls and women have short hair sometimes, too.’ I could only picture Sinead O’Connor, or Britney in her tough years. ‘And men have long hair sometimes’, I added, in the name of gender and hair equality.

‘Yes, I know’, she replied.

‘Do you know what? Mama is going to have short hair very soon. She’s going to get her hair cut very short.’

‘Why?’

(Shit, shit shit)

‘Well, remember that really strong medicine she’s getting? That’s so strong, and so good for her, that it makes her hair fall out! Funny, huh?’ F***ing hilarious.

‘Just like the girl with the metal leg in the video!’

‘Yes, that’s right!’ (Very fortuitously Eva had shown Mia a YouTube video a few weeks ago of a teenage girl who had a below-knee amputation to remove a malignant tumour. She ended up getting a prosthesis and was an accomplished ballet dancer. We had shown it to Mia because she likes ballet, and to demonstrate how people with all sorts of seemingly difficult problems can overcome them. They had shown pictures of her with no hair during chemo.)

‘And she’ll probably get some funny hats or scarves to wear around her head to protect her skin from the sun. What do you think about that?’

‘That’s cool!’

We chatted some more about it – I don’t remember what – and then she said,

‘Oh, but I’ll miss Mama’s hair. I like it when I hug her and it tickles me.’

I racked my brains.

‘I tell you what, before Mama gets her hair cut, we could make some plaits in her hair. Then we could ask the hairdresser to cut them off, and we can each keep one. How does that sound?’

‘Good. But what if it comes undone?’

‘We’ll tie it tightly at both ends.’

‘But hair bands aren’t always tight.’

‘Maybe we could use some wire.’

‘Okay.’

…………………………………………………………..

One thing a friend said to us yesterday, when I told her about this, was that in a lot of dealing with this with children, we will be led by our instincts. It’s hard not to think ahead: how it will it be when Eva rocks up at Mia’s first day at school with no hair? How will she take to the news that Eva’s going to lose her whole breast? There are so many variables. We need to wing this shit. Wing with confidence and love and sensitivity. Which is pretty much what parenting is, anyway – winging, with a whole lot of talking about the winging with one another and people we trust.

 

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Author: smenelaws

Husband, father, friend, vicarious cancer sufferer, doctor, amateur yogi.

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