day 32: prognostication

I leave hospital with a plastic pipe inserted into my chest wall, which drains off excess fluid into a little plastic grenade. I carry the contraption around in a handmade floral shoulder bag donated by the kind ladies at St Vincent’s hospital. The only real issue with the drain bag is that I keep forgetting it’s attached to my chest wall, so I tend to put it down and walk off, until the pain snaps me back like a toddler on the end of a psychological leash deciding, mid tantrum, that he really does need to follow mum out of the supermarket.

R- has created my own special medicine shelf, which is now piled high with alternative medicines and pain killers. I begin the process of recovery from the operation, faffing about the castle in between regular visits to the shelf for whatever dose is due. On day 1 beautiful S- visits from Yamba with love and food, and takes advantage of my scrabble impairment. She takes me to Bangalow to visit the naturopath, who is astounded that I am up and walking about. I love the amazement on people’s faces at the speed of my recovery. But after walking about 50 metres, my superpowers seem to wear off, and I am obliged to go home for a recuperative nap.

There’s an incredibly efficient communication system between St Vincent’s private hospital and the NSW Health-run community nursing program. The community nurse calls within hours of my return and arranges to visit on the Friday. She’s loath to remove the drain because there’s some increased risk of infection, and she won’t be available over the weekend. I fight a feeling of childhood abandonment and a temptation to display my attachment issues to hippy Nurse D-.

On day 2 I go walking along Dudgeon’s Lane and into the bamboo groves on the sewerage treatment plant site. In this light the groves seem like the scalloped halls of a mighty castle, and it takes me a little while to realise that the earth really IS moving under my feet; a week of rain has turned the ground to sludge. Through hazy bamboo endone fever I am thankful for this place to recover. I can’t imagine trying to do this in the city, with all its noise, traffic and pollution.

R- is at first shocked, then resistant, and finally tolerant of my newfound obsession with hygiene. I am convinced that dirt and grime will cause an infection, and start washing my hands compulsively with antibacterial soap, insisting on a clean towel, hand towel, and shirt every day. This creates a massive surge in laundry requirements, and without a washing machine this very soon becomes an activity we need to contract out to tolerant friends with twentieth century facilities.

The pain killers take most of the pain away, but they also take away my logical, rational mind, leaving a kind of waking dream bubble. I try to read and keep one eye on the pain dragon sitting in the corner of the room napping, snoring and twitching in its dreams of slaughter and dismemberment. I try my best to keep busy, pottering about cleaning surfaces and avoiding the couch, as though resting would risk waking the dragon.

On Saturday afternoon R- and I try doing something normal. We eat sushi and take in a session of experimental animation at the Byron Bay Film Festival – a perfect fit with my state of mind. When we arrive home, the fridge is full of vegan food delivered by lovely Lismore lesbians.

But during the weekend the drain stops draining and I manifest an infection anyway. A red stain makes its way across my chest, reminiscent of high school history lessons and the domino theory of communism spreading across the planet. R- and I take a Sunday drive to St Vincents and they remove the drain. They tell me it won’t hurt, it will just feel weird. Liars.

By Monday morning the dragon is awake and unfurled, his icy fire blowing blizzards deep inside the cavity of my chest and along the wound scar. Nurse D- says its time for antibiotics, and I make an appointment with the GP in Byron Bay. But while I’m sitting at the computer waiting for my appointment I notice a weird cold feeling, and discover the wound has burst. The liquid that is meant to be filtered through my lymph nodes is running out of my chest and down my stomach. I am now about four years old, bawling and completely swept up in the panic roller coaster.

R- and I spend the rest of the day with doctors, nurses, and finally Dr S-who removes the expensive operative dressings and then ‘presses’ the wound. This is a complex medical procedure where she literally presses on my inflamed chest to encourage fluid to bubble up and out of the wound. If anyone is feeling queasy right now, you will empathise with R-, who nearly fainted during the process. Over the next few days I repeat this process at home. I am told the fluid is good.

***

Results day comes, and another visit to Dr S- at St Vincents. There is good news: all of the sentinel lymph nodes she removed are benign. My mind echoes with the call of Austin Powers ‘oh yeah, baby’. The cancer is graded as 3 ‘aggressive’. This means the cells reproduce rapidly and are very different in structure than normal cells.

The cancer is at stage 2b. To get to this number, they consider:

• the number and size of the tumors (2 x 2 – 5cm),
• the number of affected lymph nodes (zero – take that mr grade 3 carcinoma), and
• the number of metastases, which is unknown but assumed to be zero, due to the clear nodes.

So basically it’s an aggressive cancer but we got it. All of it. I am ecstatic, a natural high this time because I haven’t had an endone all day.

But then things start to turn weird, and my belly turns over. Dr S- tells me there is a genetic link, and asks if I am planning to have children. Negatory on this one - thank heavens I settled that issue a couple of years ago now. But my nieces will need genetic counselling, and my mum will need to have more thorough regular tests. Ok, we can manage that.

Then Dr S- brings up on her screen a computer application which looks basically like a mortgage calculator. But instead of punching in my income, and housing criteria, it asks for my age and state of health, grade and stage of cancer. The Prognosticator doesn’t even take a second to think before punching out the statistic that 70% of women with my characteristics die within 10 years.

Now I know this may sound stupid, but I really hadn’t thought about death much until now. As the reader will know, I am way too shallow for much metaphysical musing. But I guess in there somewhere I had expected to have a high likelihood of living past 47, even since the diagnosis 32 days ago. Luckily my digestive system decides that now is the time to finally start working properly and there’s a sense of justified urgency in my escape to the toilet.

When I return Dr S- offers me a new statistic. This time the Prognosticator uses the same characteristics but calculates the likely outcome with chemotherapy: maybe another five years. Which puts me at 52.

So my chance of making it to 47 without chemo are 70:30, but then there’s a possible maybe extra five years if I undertake a treatment of radical, carcinogenic, systemic poison. I have been ambivalent at best about chemotherapy so far, but had thought that if the grade was aggressive then I would probably have to go through it. But for a ‘maybe’ five years? I start to rethink the whole thing. Of course, there’s no way I’m telling Dr S-, because perfect patient would never buck the system.

Instead I ask a whole bunch of other questions. How come I need chemo, when the pathology suggests that there’s no evidence of cancer anywhere else? The tests also show that my cancer is triple negative for hormones, which means no hormone treatment, but I’ve read that there’s a research project achieving results with hormone treatment for triple negatives.

“So what can you tell me about the SORBET trial?” I ask, referring to my tiny notes, scribbled on a wad of dog eared papers. “I read that 20% of people who are triple negative may still be positive for oestrogen B”.

“Where did you get that?”

“On the internet – there’s a breast cancer Australia site that links you to all these clinical trials.”

“Not only don’t I know the answer, I had no idea there was an oestrogen alpha and oestrogen beta.”

My superwoman Dr S- seems tired for the first time. I guess expecting her to know about every study on every internet site frequented by desperadoes like me is a little like expecting Julia Gillard to understand the socio-ecological impacts of re-introducing the train in the Northern Rivers. It would be great, but maybe my expectations are a little high. That’s probably a natural result of turning my doctor into a superhuman figure who flies an invisible jet.

“You can ask all of those questions when you talk to the oncologist Dr J-… but first we need to get rid of that infection.”

Apparently Dr J- really knows his stuff – best in the business – but sometimes rubs people up the wrong way. He’s a great statistician I hear, so I am imagining a skinny man with grey skin and a brown cardigan who’s situated somewhere on the unfortunate side of the autism spectrum.

For now I leave and thank Dr S- for everything she has done so far. In the car on the way home I am grumpy and distracted by the leftover breast, and tell R- that all I really want right now is a flat chest. We gripe each other about the validity of the prognosticator:

“Those statistics don’t include the women who are doing all the healthy stuff you’re doing, they’re just people who continue to smoke and not exercise and eat rubbish,” she says, dismissing the big chunk of bad news that’s hanging in the air like a fart no one wants to claim.

“You don’t know that, we don’t know…they could all be doing things to get healthy,” I say, angry more at myself for validating the stupid Prognosticator.

We sit in silence a long time, and eventually R- says

“Whatever happens, we just need to get all the information, ask lots of questions…that’s why I want to be at these appointments, so we can hear it together and then work through what we know.”

And I love her again and again and again. I know that every part of her would be resisting the idea of chemotherapy, but that she will back me if I decide to do it. When we get home, we laugh about the fact that it’s the flat side of my chest that looks normal now, the other side braless and wobbling, making my t-shirts look asymetrical.

The Prognosticator has totally disempowered me, and I feel vulnerable in its shadow. Over the next few days I battle pain and infection, gruesome dressings and a sense of hopelessness. R- puts her foot down about my wandering and pottering about, and I finally sit still.

Then one day I am visited by a dear friend, caught up in her own troubles, who leaves me filled with light and hope. I feel like there’s a web of life, green-fused with healing and love, which I’m surfing along. It’s like sunlight inside my veins and I know that what matters most is this moment, right now. I curl up with my dragon and sleep.

****

Last night we went to an ACON lesbian health event and were hugged, smiled at and loved by our beautiful community. I drank two glasses of wine and when the Ukulele Lesbians played a rendition of Fat Bottomed Girls I sang along at the top of my lungs. It’s my first outing and I hit the wall in about two hours, but this morning I woke and the red line of infection had retreated.

One thing I have learned through this process is that sometimes it takes longer than I think to make a decision that’s right for me. I realise there’s no urgency to decide about chemotherapy right now. I could decide to recover and have a second mastectomy before going near it. I could decide to live healthy and eat healthy, to become a yoga teacher and learn to surf instead of spending days nauseated from systemic poisoning. At the end of the day, the prognosticator is just a matrix of 1s and 0s.