Clear View

Yesterday morning I got a text from my mother at 7:00am. “Is it garbage day? Recycling or yard waste? I don’t want to miss it.” She was up with Lucy, getting her ready for school, while I nursed a coffee in the dark of our room at RMH, trying not to wake Violet.

It took me a moment to process the question. Garbage day? What is this you speak of? And what day IS it, anyway?”  We’ve been on “summer break” for so long that the concept of days of the week only seems relevant in medical terms. Clinic appointments. Scans. Procedures.

“I think so. Let me Google it.” Because that’s what you do when you don’t have an answer. No Mom, I didn’t keep the paperwork on the fridge that the Town of Peachland issued when we moved in detailing the garbage schedule.

I can, however, provide ample documentation outlining all the side effects of Cyclophosphamide, Topotecan and Dinutuximab. I’ve got a binder – a big one.

It’s not just a lack of necessity that has kept me from considering the days of the week lately. In fact, it’s almost out of necessity that it’s been removed from my attention. It’s been part of the process of coping, the strategy for adjusting to this way of living. The less details to consider, the more focus on the big stuff. Yes, I forget everything these days from key and iphone locations to my own children’s names, but I can tell you how refreshing the aroma of spring rain is, or how deeply rewarding it feels to spend an evening playing Animal Crossing with my kids.

Somethings just need to matter more when you are taking one day at a time.

But we also have this extra special, intense quality in our own sense of presence as of late. On Wednesday, Violet and I returned to Vancouver for her bone marrow biopsy and PET/CT scan. We met with our team on Thursday to chat about these and the upcoming immunotherapy treatments this week before they put her under for the test. I asked our Oncologist directly, “Is there something we should be expecting in these scans?”

I knew it was a somewhat ridiculous question. For one, expectations can be a death sentence for optimism depending on the conditions we hang our hats on. For another, as is the case with almost any medical professional, managing expectations is critical, so putting forward a stoic, objective, conjecture about outcomes is necessary. “Well,” she said with her pleasant but forever balanced vocal tone, “ideally we want it to show that we are improving. Or, at least, not moving backwards. If that’s the case, we just have a different conversation on Monday.”

Just a different conversation. Like the idea of sitting down to chat about how the torturous treatments she’s been enduring aren’t working would be as casual as a coffee date.

But it made me feel better. Less scared. Her confidence that, on the chance things were going “backwards”, we had other strategies on hand, was a huge relief. Because it took the pressure off of the results. The terror that comes with a worst-case scenario.

Again, I leaned back into my understanding and wisdom that I’ve been fortunate enough to develop these past few months. There is no finish line. There is no need to fear conditions so much because they are always changing. We are always in some kind of limbo. There is no need for things to play out any certain way in order to feel safe and secure and happy. That’s a choice, no matter what some silly scan might say.

The biopsy was a piece of cake (from any mother enduring this kind of existence, no doubt they can relate to the absurdity of feeling non-plussed about a biopsy procedure – but in the grand scheme of things, it’s a walk in the park for Violet). But Friday morning brought with it a deep anxious ache that both Violet and I had been addressing for months. Her PET/CT required an IV (she has a Central Line in her chest used for most of her medicine administration, but the contrast used for the scan must go through an alternative route).

IV insertions are Violet’s Achilles Heel. Without question, despite all of the trauma she has endured, getting IVs inserted has been the cause of more terror than anything else. I have had to pin her down, screaming in horror, multiple times (and after giving her hours to “prepare and ready herself” on her own, to no avail). I knew it was likely going to happen again. And it had been awhile since she’d had to do something this hard.

We were both scared. Big time. And I had my doubts that we were going to be able to tackle this one at all.

As a side note, Violet has proven to be the most stubborn human being ever to have walked the earth. She is somewhat infamous on the ward for her complete refusal to take advice and guidance from anyone if it is not first her own idea. She is her absolute worst enemy. Even with the most obvious suggestions to ease her suffering, she will not comply if she is ever told to consider doing something she did not come up with on her own. It is a beautiful thing in many regards, that tenacity. It makes her a fighter, an independent, free-willed warrior.

But when it comes to things like IVs, it is a nightmare. “Violet, why don’t you watch a show on your ipad while we do this. It’s a great distraction.” To which she responds by tossing the ipad across the room and focusing all of her attention with deliberate intent on the horrifying needle about to go into her hand.

But this time, as we sat on the bed and the nurse settled in for what we all assumed would be one wild ride that morning, Violet took the reins like I have never seen her do in all my life. She looked at both of us with tears in her eyes and told us clearly, “I’m really scared.” And then she closed them, took several deep breaths, let the tears flow and stuck her hand toward the nurse. “OK, do it. I’m ready.”

It was a complete and utter game changer. It felt like the oceans parted and some secret hidden beneath the waves was finally revealed. She found something in her I have been waiting for her to acknowledge all along. It was total and complete magic.

And it was an energy shift in a way that can’t be understated. It felt like the beginning of a free fall into new territory. A culmination of months of pressure rising and collecting below the surface, bursting into the atmosphere. It felt like freedom. “OK Mom,” she said, smiling as they put the Tegaderm tape on it. “I’ll try to remember next time that it’s not so bad after all.”

The scan itself was a breeze. She positioned herself expertly into the bed, allowing it to slide in and out of the donut-shaped machine over and over, like it’s done multiple times before. She held her hands above her head casually, lying completely still, almost enjoying the rhythm and noise. My heart ached as I watched it – my little girl completely acclimatized to such a strange situation.

The next morning my brother came for a visit. So did my very best friend whom I have no tseen in months, surprising us with her entire family (her eldest lives in Victoria, so it is a rare moment they are all in the same place, let alone visiting me!). It was one of those days where everything feels easy and aligned, where you literally forget all of your hardships and instead savour the deliciousness of life without any bitterness or background tension. We even won tickets to the hockey game, which Violet and I enjoyed thoroughly. We rode that elevated wave of enthusiasm all weekend long – that confidence and clarity and joy that Violet mustered all on her own Friday morning.

But it wasn’t in a vacuum. In fact, that joy collected validation as the days went on. Happiness built on itself, attracting more and more excuses, as real happiness does, to manifest itself.

Monday morning, just before lunch, we met with our team again. “Well,”, my Oncologist said as she opened up the folder in front of her. “Before we talk about upcoming treatments, I suppose we should review the results.”

I scanned my body for signs of resistance and anxiety, but it came up clean. We were already so high I couldn’t find that feeling of doubt or fear. It was just too far away.

“Both the tests – the biopsy and the scan – were excellent. As far as these scans can detect, there is no identifiable malignancy left in her body.”

I looked into her eyes. Her face was controlled, but her eyes were alive with excitement.”

“It’s good news. It’s, well, great news.”

Um…

(Insert an unidentifiable ringing in the ears here – a “nothing” sound, like everything is completely frozen in time and all that’s left is a hum)

“So, that’s great. Really great. So now let’s talk next steps.”

No time to dwell. Because no doctor wants to give you the impression, when you are about to enter into agonizing immunotherapy treatment, that it’s all over and the fat lady has sung.

But let’s face it, if there is a moment to take a pause and enjoy that fat lady’s voice, it’s when a doctor tells you that your 9-year-old daughter who was diagnosed 9.5 months ago with potentially fatal stage four, high risk cancer is visibly “cancer-free” according to their best technology, it’s then.

Even as I write, it deserves another pause for reflection.

And what was Violet’s response? A smile, and a request for ice cream. “Do I get a reward?” she asked.

I’d say so, my darling girl.

It’s possible there are microscopic cells undetectable by the scans that still have the potential to grow. Cancer is most definitely elusive, and lurks in unseen spaces. But that’s what the immunotherapy is for. Nipping it in the bud.

But isn’t this just life under a magnifying glass? Isn’t this just such an obvious excuse to evaluate what we are all trying to do every day of our lives? We are all aware of our own immortality. We all know we are vulnerable to circumstances – that there is no scenario where we, as humans, never have to worry about the potential of scary results on a scan. We are all “doomed” in one way or another.

But we all get chances – excuse after excuse – in our lives to celebrate the moment at hand. To feel lifted-up by successes. To stop at a ledge on our ever-expanding journey up the mountain and give ourselves an ecstatic minute to take in the view.

I’m not sure you can ever really let it in – that feeling of relief – the way you did before when you go through something like this. I know too much now. I know nothing is forever, or sure, or “stable”. A “clean bill of health” is a moving target.

But today we are taking a moment on that ledge to look out and enjoy how far we’ve come. To acknowledge the intricate, infinite factors that have aligned in order for us to get here. And without question, to appreciate the power that love has had in getting us to where we are.

Today we have a clear view. We have validation to support what we already knew – that love is more powerful than anything. That Violet is smarter, braver and stronger than she ever knew. That positive expectation is a force to be reckoned with.

I don’t know what day it is, and I don’t care. Because today that doesn’t matter. No appointments. No procedures. No obligations. No need to validate anything. Just wide-open clear space – a day off to savour before we go back into the fire.

And hopefully, our journey to get to this perspective means we can share the view with all that have journeyed with us, and lifted us up to this ledge.