June 25, 2017
The fight.Cancer | Chemotherapy
I’ll admit, I have imagined music playing at the conclusion of my funeral. More than once, actually. Anxiously chewed my cheek and let a series of notes to an unnamed song fill my head. It is not the most inspiring of day dreams. And once a thought like that enters my mind, it is difficult to keep it from escalating. Meaning I don't just hear the song, but agonise over how my team would possibly agree on said song.
‘My Dad and Tim don’t necessarily share music tastes. I listen to different tunes with my Mum than I do with my brothers. How are they going to work this stuff out? How is it fair to leave this to them. It isn’t. I have to choose. How on earth do I do that?’. On and on I go.
My heart has sank on the odd occasion that these wicked thoughts have managed to weave their way into my day. Thoughts about the future. In these moments, showered with fear of the unknown, this is what my thoughts about the future have been reduced to. Because an opportunity to reschedule our cancelled Europe trip is not guaranteed. The likelihood of seeing Joshua graduate high school is slim. But a funeral? Well, I have known that is coming. Too soon.
When these thoughts drop by, the ambush of emotion accompanying them is relentless. The fury. The despair. The anguish that I should ever have to prepare my parents for how best to send me off. How to suitably pay respect to the life of their daughter. The suggestion is simply absurd and devastating to consider.
Although it may seem like a simple analogy, it is really fitting to label these moments as head spinning; a spin that gains momentum quickly as it is fed by my thoughts, and moves perilously close to spiralling out of control. Now, I choose to consider the initial thoughts to be ultimately helpful, because they aid me in identifying my fears and understanding my own head, not to mention the emotions that are likely playing out in the minds of the people around me. But the spin is not helpful. The bombardment of emotion is not helpful. It is natural, it is somewhat inevitable, and I don’t ignore it – but I also don’t let it take over. I stop. I breathe. I close my eyes. I think of a thought that takes me to a happy place. Tim holding my hand. Joshua grinning at me. Moments of abundant joy that provide a counter balance to the spin and allow me to slow down and regroup.
And there it is. The fight.
I have been told on so many occasions over the past four months that I need to keep up the fight. That I need to rage my cancer battle with commitment and resolve. That it is the strength of my fight against this beast that will make the difference. But here’s the thing…
I refuse to fight against my cancer. Refuse. With some clear exceptions, I think history has fairly demonstrated that aggressive fights are generally a waste of time, energy and spirit. So forget that.
But I am a fighter. I am fighting with every fibre of me. My fight consumes me and dictates my thoughts and actions every day. So how do I think about my fight? Simple. I am fighting for life. Not against cancer. For life.
A fight against cancer is fraught with danger. Cancer is a mystery. A hairy, scary mystery. Sure, we know a lot about cancer, but we don’t know a lot more. A fight against cancer belongs in a safe and isolated science lab, where emotions and baggage are checked at the door and exchanged for intellectual fire power and lab coats. I don’t know the first thing about fighting cancer, and I consider myself to be a particularly well-educated patient.
A fight for life is an entirely different proposition. Life, I understand. Which is saying something, given how infinitely complex life is. But the way we choose to live it – our aspirations, our character, our fears, our choices – that is something to own and understand and challenge and learn from. And certainly, something to fight for.
I am fighting for my life. At present, my life happens to feature a cancer diagnosis. A dangerously advanced stage IV cancer diagnosis. I don’t know if that will be the most challenging thing I will face in my life. But I do know that I will fight for this life despite its cancer. I will fight for all of its complexities. And because I am active in this fight, I am able to package up the battles won and lost and lessons learnt, and carry them beyond cancer. Into the rest of my life.
Fight for your life. That is the mantra that was playing on repeat in my head this week, as I filled my body with dyes and squeezed my broad shoulders onto skinny tables and floated in and out of donut scanning machines. Own it. Fight.
My CT and PET scans were ordered to allow my doctors to assess the response of my disease to six courses of chemotherapy. I have been hanging out for these scans ever since my first oncology appointment. My entire team has. Every time we visit my oncologist, we confirm the game plan: order scans after six treatments. But when it finally came time to see those words on my scan referral – “assess patient response to treatment” – my skin crawled and my stomach dropped. ‘What if there is no response? What if the response is weak? What if the response doesn’t change my position at all? What if, what if, what if…’.
I have blood tests in the days preceding my fortnightly chemotherapy treatments. We test to make sure I am healthy and my body is ready for another dose of poison. We also test to understand my CEA, or carcinoembryonic antigen, a type of protein that is used as a tumour marker for people with cancer of the gastrointestinal tract. My blood test results over the last three months have returned a consistent drop in my CEA, clearly demonstrating a positive response to my treatment.
But that is not enough. I am not looking for just a positive response. That is not going to cut it for someone who has been described painfully too many times by painfully too many experts as having “significant secondary disease of a liver that is not, and likely never will be, operable”. I am fighting for an exceptional response that will change the nature of my diagnosis. I am fighting for my life.
The PET scan was first. Just as I had three months ago, I arrived early and lay quietly as my body was pumped with radioactive tracers to hunt and expose my cancer. I was positioned on the scanning table and my arms were delicately arranged above my head. This time, I was not offered the company of Gerry and the Pacemakers, nor did I request it. This was no time for whimsical reflection on the irony of a musical accompaniment: this was go time. I breathed lightly and rested my eyelids shut and thought the most benign thoughts I had available to me.
The next morning, I was up early and back at the hospital, feeling slightly nauseous from my oral contrast breakfast. I had a cannula inserted into my arm and was hooked up to an intravenous dye. I met the sympathetic eyes of a nurse who guided my arms to their familiar overhead position and assured me that although I was sure to feel like I had wet myself when the dye was pumped in to me, I won’t have. I was sure I had. I meticulously followed the breathing directions of the donut’s rather impatient motorised voice, and in a matter of minutes, I was done. My scans were done. My response to treatment would now be plain to see. I now needed to wait a measly 24 hours to learn just what that response was.
Tim and I filled the next morning with a visit to a prestigious Melbourne school that we would so love to send Joshua to. It was a coincidence, really, that the appointments had lined up this way. But it was the best thing we could have done: scoping out our opportunity to simply do everything in our power to make the very best decisions for him, amongst this bewildering set of circumstances. It was certainly a fighting moment.
By lunch time, we were sitting in a waiting room, placing bets on how long indeed we might be waiting to see our specialist liver surgeon. Tim was on the money. As we tried to joke and smile and lift each other, we heard the unmistakable sound of a wail from the office across the hall. We knew this wail all too well. Both of us wished desperately that we didn’t. Both of us heard it. Neither of us mentioned it.
As our surgeon greeted us and welcomed us into his office, I searched urgently for a telling sign in his facial expression and body language and eye contact. Is this a good meeting? Is he looking forward to this discussion? Is he tentative? Has he even looked at my scans yet? I heard myself stumbling over pleasantries and laughing uncomfortably as I confirmed yes, I had recently had some scans, and no, we hadn’t yet heard the results.
And then he said it. “Well, I have some good news”. And over the next 30 minutes, we unpacked the detail of my remarkable response to my chemotherapy treatment.
Chemotherapy works by killing cancer cells throughout the body. In fact, chemotherapy drugs go after all fast-dividing cells, which is why hair, nails and skin also feel the impact of chemotherapy. Chemo drugs may be prescribed as an appropriate treatment for a number of different reasons – as a cure, as a control, or as a palliation that eases the symptoms of the cancer for those people with a particularly advanced disease.
Chemotherapy drugs are designed to fight against cancer. So it is especially helpful to have them on board in my fight for life. But it is important to understand that a person’s response to chemotherapy is not always predictable. During my first discussion with an oncologist, chemotherapy was presented to me and my team as a palliative solution – a life extending option that would make me feel a little worse with the goal of making me feel a little better, for a time. During my second discussion with an oncologist, chemotherapy was presented as a strategy to control my cancer, with the ambition that this control might actually serve to reduce the tumours in my liver to such an extent that surgery becomes an option. At no stage have I had a discussion about the curative potential of chemotherapy.
My team have always described my treatment plan as a control plan, with a clear commitment to chasing the “very remote window of opportunity” to make surgery an option. This is a far-flung, highly unlikely, probably dreaming style of a window. But the window was there so my team committed to chasing it. Every decision I have made about my lifestyle, my diet, my exercise regime, my social calendar, the lot, have all been predicated on my window chase.
The idea that we could have had a significant response to chemotherapy – even an extraordinary response to chemotherapy – has entered my mind. In much the same way as the morbidly negative thoughts wander through my day, the exceptionally positive do too. In my hopeful, fighting, emotion-charged brain, such extreme thoughts never walk alone. My window-chasing plan was for a response that made my inoperable liver operable. But I dared to dream bigger. Could it really happen? Could my chemotherapy meaningfully shrink my liver tumours, turn them off, even eradicate some entirely?
Yes. Yes, it could.
My liver tumours have reacted exceptionally to my treatment. I had more than ten tumours preventing surgery from being an option. After six rounds of chemotherapy, I have only one that is still proclaiming its presence via the cancer-interrogating PET scan. One.
The discussion with my liver surgeon was clinical and exhilarating in equal measure. Tim gripped my hand as we were told that the response to my chemotherapy was so exceptional that I may not even need liver surgery. That chemotherapy was having an effect in me that was not just unexpected, but quite remarkable (and in my perhaps limited but certainly spirited experience with cancer experts, when a surgeon uses a word like that, things are pretty interesting!).
My chemotherapy is working, so the plan is for more. Much more. As much as I can possibly take, before the aggressive side effects verge on irreversible. And then, we think about removing the primary tumour in my bowel and addressing the small spot that remains on my lung and going after any remaining liver lesions. We are keeping in mind that a lot can change between now and then. Just as a lot has changed between then and now.
A change in prognosis of this magnitude has been challenging for me to understand at times. This news is only four days old, and I think I may need a few more to unpack what it really means for me and my gorgeous team. Just how wonderful this really is. But for now, I am smiling and laughing and smiling some more. My conversations with my medical team can extend beyond my chemotherapy, beyond slim hopes, beyond my liver. My thoughts for the future can extend beyond rescheduling our European holiday. The heavy drapes surrounding my remote, wishful window have been pulled back, saturating me in radiant light and vast opportunities.
I feel like I have won the lottery a thousand times over. In truth, I have simply had my life handed back to me. A life I am fighting so hard for. It may be more complicated. It may be unfamiliar at times. But it is mine. All mine.