April 09, 2017

The prognosis.

“Would you like to listen to some music while you are lying here, Nicole?”.

I was stretched out on a very skinny bed with my arms above my head, waiting to be pushed into my PET scan. Music was the last thing I expected. Well, perhaps a glass of Veuve was the last thing. Music would do nicely.

“Sure, yes, that would be nice”.

“Great, some sixties stuff?”.

Was this guy for real? He had asked with a slight hesitation, which served to betray the harsh truth: ‘sixties stuff’ was the only CD on rotation in the PET scan room.

“Sixties?! Um, sure!”.

And then it hit me. Of course. Sixties stuff. Because, when you think about the target audience for PET scan entertainment, sixties stuff works. That’s a natural fit. And once again, I was struck by the degree to which I am outside the norm when it comes to cancer patients. Hanging out way up the tail of the bell curve. It didn’t make me mad. It didn’t make me sad. It made me smile. I lay there, smiling, listening to Gerry and the Pacemakers as I was shuffled through the PET donut.

A PET scan - positron emission tomography – is a nuclear medicine imaging scan that tracks down cancer in your body, among other things. You are filled with radioactive liquid via a needle in the arm, left to ‘bake’ in your own radioactivity for an hour, and then moved through an imaging donut for thirty minutes or so. I felt exposed on this table. Laid bare. In truth, I was allowed to keep all my clothes on and had added a robe and blanket for extra warm. But metaphorically, I was naked. If there was more cancer to be found in this body, this was the moment it was going to be tracked down. It felt ominous. But it also felt liberating. I was going to know it all.

Knowing it all at this moment was an extremely important requirement for me. Because we had made some decisions. Made some changes. Let me explain.

When we walked out of our first oncology appointment – after our group hug – our actions immediately began to mirror our words. Time to move forward. The first step? More information. We were offered the option of speaking to a liver surgeon, and took it immediately. A very prominent and very animated surgeon confirmed what we had been told – liver surgery is not an option, and likely never will be.

I am going to attempt to describe the unresectable nature of my liver – apologies in advance to my medical friends and family for what will no doubt be a crude summary. The liver is capable of being sliced up to the extreme. All other things being well, we can generally get on without 80 per cent of it (this has made me wonder why it needed to be so large and tumour-attracting in the first place, dagnamit! But I digress).

The critical parts of the liver are its function-enabling architecture. The tubes and pipes that bring the blood in and out and the bile around and about. There is a left lobe and right lobe and various segments of the liver: cutting tumours out of these segments is easy as pie for surgeons. Respect. Easy, that is, until said tumours start butting up against the aforementioned architecture. Then things get too dicey to be diced.

I have “at least” twelve tumours in my liver. Some of them are up to eight centimetres wide. But as it turns out, their size doesn’t particularly matter. Their location does. And the fact that they are sitting up against pretty much every important piece of architecture within the liver – that matters too. My liver is inoperable because cutting Swiss-cheese style to remove the tumours is not an option, particularly when they have made themselves at home right next to my hepatic artery and portal vein. And for those thinking “doesn’t she have colon cancer? Why start at the liver?” – Good question. Is colorectal surgery possible? Yes. Is there any point, at this stage, given the progress of the cancer in my liver? No.

We walked away from our liver surgery discussion feeling adequately informed. We had respect for the surgeon we had met and agreed he was a nice guy – which helps too. So why did we immediately make an appointment to see someone else?

A couple of reasons. The first: the lack of a firm opinion regarding a liver biopsy. My first biopsy of my cancer, which had been taken from the tumour in my colon during my colonoscopy, was inconclusive. There was not enough cancer in the sample. In fact, there was only ‘pre-cancer’ in the sample. It is critical to get an understanding of the cancer you are dealing with before kicking off treatment – or indeed, before surgery, if that is the path – because this understanding informs decisions about treatment. Modern medicine has produced targeted treatments that can be used to attack the unique characteristics of a cancer. Much of the popular press reporting on ‘amazing new cancer treatments’ refers to these targeted drugs.

Because the first sample was a dud (nobody’s fault, tumours are tricky little suckers!) we needed another crack at it. We had been told once that a liver biopsy would be the next step, a step that was not without risk. This is because the needle that grabs the cancer from the liver creates a needle track, and this needle track is a fertile new environment for cancer to grow, should it decide to. And let’s be honest, my cancer seemed to be taking a lot of liberties when it comes to growth in my liver! During our meeting with our first liver surgeon, we were advised of this risk once again. Which left me (and my team) wondering why we weren’t just doing another colonoscopy.

Reason number two: our first expert had been involved with my case from the start. Doctors are very consultative in their work. Particularly when it comes to diseases like cancer. A panel of experts – oncologists, hepatic surgeons, colorectal surgeons – had all sat around and discussed my case and its complications, and come to a consensus view: surgery no, chemotherapy yes. Our first liver surgeon had sat on that panel – which, on initial consideration, would seem a very good thing. That is certainly what we had thought. But then a thought began to niggle at me: “this panel of experts have made up their minds together and are all going to tell me the same thing”. I respected them and what they had to say. But I needed to hear from someone who hadn’t been in that room.

There is a tragic irony to my next statement: luckily, Tim’s family had ample experience in cancer and a strong network of medical contacts. Positivity. Optimism. Glass half full – I was going to benefit from every past experience. So Tim’s mum, in her characteristically ‘pushy midwife’ way (which I have come to treasure, and more, emulate whenever I can), got me in. I was seeing another guy. Another really good guy. And this is where things got interesting: it was suggested the liver biopsy could be a mistake. Too great a risk. Instead, we were going to do another colonoscopy. Sure, there were risks with that too - but not to the liver, and I needed all the liver upside we could muster.

And then, another amendment to the ‘next steps’ list: a PET scan was ordered as a priority. Until now, a PET scan had not even been raised for consideration. But our second liver surgeon in as many days was switching up the plan. We needed to understand every piece of the cancer puzzle, before we blasted it with drugs. A PET scan would give us the annotated map of where the cancer was, and importantly – was not.

When my new liver specialist concluded his meeting with us by suggesting that we speak to the oncologist he works with, we agreed immediately.

My second encounter with an oncologist was an improvement on my first. That is a result of circumstances more than anything else. My first had the pretty grim role of news breaker. That was never going to be an easy task. My second was catching me and my A team on a considerably more enthusiastic (if not mildly defiant) tangent. All we needed to complete this picture was to meet an attitude that matched our own. And boy, did this guy deliver. He was a deep, measured breath of cool, fresh air. A game changer. He was softly spoken with kind eyes and a warm smile. And he was ready to kick the shit out of my cancer. He wanted me on an enhanced chemo program and he wanted me in the gym. I finally felt like someone was treating me like the cancer patient I was: unlikely, otherwise healthy, and ready and willing to beat it.

This is what I needed. The fact that a medical professional, with so much experience, was prepared to tell me it was possible – not guaranteed – just possible, was the best thing I had ever heard. Having a beautifully close relationship with your family is not guaranteed – it’s possible. I have it. A marriage full of love, mutual respect, admiration and truth is not guaranteed – it’s possible. I have it. Giving birth to four kilos of perfection is not guaranteed – it’s possible. Check. Going after what you want, what you need, that is possible. Each one of us is capable of that. And I, at that moment, in my new oncologist’s office, knew that going after this cancer was now just another part of my story. Another pursuit. Just another angle to Nicole.

When the PET scan results were in, my new liver surgeon called me. I was standing on Glenferrie Road, having had a long lunch with Tim and my mum. I so wanted him to tell me we had cancer in two places and two places only. I wanted that good news so badly. He wanted to give me that news, too. I know, because he told me he wanted to. But he couldn’t. Because it wasn’t. Small indications had been found in my lung and a lymph node in my abdomen.

Sitting here, writing this, I don’t even know which lung. Because it didn’t matter. It wasn’t going to affect the plan. Sure, the preference was always going to be to limit the metastasis of the cancer. The spread. But it had already moved. It wasn’t in my brain. That would have been nasty. Or in my spine. If I was going to have an outstanding reaction to my chemo treatment and destroy this thing, another mark in my lung was not going to change the state of play. And so, my team decided this was a good news call. We had a firm diagnosis and a prognosis that we were crafting together, with an outstanding group of experts who saw the world just as we saw it.

Information is so powerful. But outlook, even more so. I had had the same news about my situation delivered by two ‘teams’ of medical practitioners. The diagnosis had not changed. But the prognosis was so profoundly different.

Rather than reflect on the broad, aged and therefore somewhat irrelevant statistics relating to chemotherapy efficacy and five year survival rates, my new team had a plan. And here it is: fight. Fight to beat this cancer. Plan to reduce the size of the tumours in the liver with the chemo. Support the chemo with an active, healthy lifestyle that includes weight-based workouts, which have been linked to favourable outcomes. Calm my mind with meditation and mindfulness. And plenty of laughter and general Crank-Cooper frivolity. And as the tumours reduce, they will do so in a manner that creates space between them and the architecture of my liver. And when they do – my liver will be operable. And then we continue that treatment as required and start down a path peppered with multiple, complex surgeries and we will beat it.

The chances of that? Slim. But nobody can actually tell me the real statistics. The concrete chances of me beating this. And when the numbers do weigh in, the likelihood that those statistics reflect a study group of 32 year old females with stage four colon cancer, with abundant positivity and a regular workout schedule and a healthy diet and a fierce commitment to fight, are pretty slim too. It is clear that I sit outside of the statistics in finding myself with colon cancer at all, so I plan to continue defying the law of averages.

 

Nic x