Bad News
It was the day after our return to Perth in the back of a tow truck, after a week spent enjoying the natural beauty of southern WA, and we were on our way to an oncology appointment that would decide our fate for the foreseeable future. After a short wait, we were ushered in by one of the many oncology registrars that I have seen in my time since losing the eye — an endless revolving door of professionals-in-training, breaking any illusion of continuity of care. The direct training is important, of course, yet I cannot help but feel that my needs as a patient are considered secondary to the needs of the system, in a time where a regular oncologist with direct involvement in my case is more important than ever. You see, Alessandra’s research had revealed one consistency for patients with metastatic uveal melanoma: once it reaches the liver, most patients don’t make it beyond a year.
The bluish-grey hue is the original uveal melanoma, growing in my right eye all those years ago
To her credit, this registrar was composed, attentive and up-front — though she did not discuss the prognosis that we had discovered for ourselves. She confirmed that yes, the liver lesion is a metastasis; and that blood tests results rule me out of their first choice for treatment. Instead, she said, the triage meeting had agreed that cyberknife was the best course of action to remove the existing tumor. This pseudo-surgery would then be followed up with referral for participation in a Phase-3 clinical trial for a new immunotherapy drug, which has had promising results in the treatment of uveal melanoma. The latter was not guaranteed at this stage — the trial hadn’t even opened yet and was the first of its kind in Western Australia — but I would be recommended to the trial team by my oncologist, and would then be screened for suitability.
I felt a blend of emotions as we left the hospital, and they sat at the bottom of a vast, empty space inside me; present, yet distant. It wasn’t the confirmation of metastasis — that, I already knew. There had been no other reasonable explanation, given my context. Instead, there was the realisation that I had held out hope in having the genetic profile necessary for the treatment of choice. Helping to offset the blow was the offer of a cutting edge treatment — one which had been described to me previously by a specialist who was not aware of the upcoming trial. Yet my inclusion in the trial was not a sure thing…it depended on meeting inclusion criteria that had not yet been outlined.
Then there was the cyberknife treatment. All the research Alessandra had worked her way through seemed to suggest that surgical resection significantly increased survival chances when used as a precursor to treatment. Cyberknife, it turns out, is a far less invasive procedure, which nonetheless produces results on par with traditional surgery. It involves intense, hyper-focused blasts of electric radiation, targeting the tumor directly with an accuracy and precision not possible with human hands. Where surgery would leave me recovering for ten weeks or more, cyberknife would let me keep living my life with minimal ill-effect, whilst still destroying the existing tumor. Personally, I would prefer the old-fashioned take-the-goddamn-thing-out-of-me approach, but the registrar stated that open surgery would preclude me from the clinical trial. She advised that the cyberknife would be arranged within the next two weeks, and we would learn more about the clinical trial once it opened. In the meantime, all we could do was wait.
It is strange — since learning of just how grim my situation is, I have felt a palpable shift in the quality of my day-to-day experience. I feel sharper, more present, more in-focus than ever. I feel gratitude, too —waves of gratitude — for my friends, my family, my partner, and broader life. Though it isn’t glamorous, and is far from the adventurous existence we had been living just months before, I feel enriched and engaged with life here in a new way. Since learning the prognosis for my condition, my connectedness to my social world has deepened, and I am noticing the many moments of beauty that are scattered through a day: the birds that flit from tree to tree as we walk the trail; the effects of light on the ocean; the colours of the sunset. It feels as though, no matter what comes, I am alive, here, now — and that is something to be cherished.
…
Having confirmed that we would be back in Perth for the foreseeable future, Alessandra and I set about building a foundation for our life here. While we were away, mum had been searching for a car for us, and surprised us upon our return, having put a deposit down on one already. With our new car, we had the freedom to begin house-hunting, seeking to secure the privacy and independence having our own home would afford us. Though we both knew whatever we bought would not be our forever home, we were set on finding something with a structure we could work with. Bathrooms, kitchens and flooring can be changed, after all but the location and lifestyle a place provides cannot. Together, we scrolled through hundreds of properties, experimenting with budget and suburb as we sent each other links to our favourites. We attended a few home opens, but were disappointed each time, by either the low quality, at one end, or the sterility, on the other, of each place we went to. On one fateful day, we viewed four properties — two of which held promise. One was everything we could hope for: fireplaces; decorative mouldings on the high ceilings; dark-stained wooden flooring. It was quaint and ideal, and it was easy to imagine how replenishing it would be to live there…were it not for the fact that it opened onto one of the busiest roads in all of Perth, with all the noise and smells you might expect. The other property was at the top of a quiet hill in South Perth, just shy of the river foreshore and a short walk to the nearest cafe strip. The lifestyle would be superb, and the private back patio and communal pool were a nice bonus…but the bedrooms were small, and the little windows made them seem gloomy and stuffy.
The recent liver CT scan
We were conflicted. Fortunately for us, we had help. We viewed one other apartment in South Perth, and though it did not meet our needs, we got chatting to the real estate agent. The agent, Diane, was one of those rare people who are out to help, no matter what. We stood in the car park, asking questions about making offers and how best to research prospective homes. She must have given us half an hour of her time, even going so far as to look up the other South Perth property we had looked at, giving us her thoughts on the location and pricing. Finally, Diane insisted that we call her if we had any further questions, or wanted to enlist her help in looking up other properties. One week later, Diane would save us $15,000…but that is a story for the next entry.
It seems to me that the lessons we can take from our current experiences are repeating and deepening, reinforced week after week. This may be because crises contain within them many of the deepest lessons there are to learn — too deep to see as anything other than clichés under normal conditions. Regardless, they are what we are noticing as we move forward, step by step.
Knowledge of something negative is easier to deal with than open-ended uncertainty. With knowledge, one can prepare and take action.
When life itself cannot be taken for granted, everything becomes unrecognisably beautiful. Realise the mutability of things, and you’ll see it.
It is not about living for the present, but living in the present.
The life that can withstand a storm is the life built on a solid foundation. Friends, family, routines, beliefs — these are the foundations of a resilient life.
There are beautiful people out there, ready and willing to help those who ask.
