Bated Breath

We’ve been back from this round of scans for a week and a half already and I haven’t updated anyone yet. I’m not exactly sure why I haven’t written anything. It’s not because I don’t want to, per se. And it’s not really because I don’t have anything to share. Maybe I just haven’t been ready.

Maybe it’s also because I have been trying a different approach to life in general lately, and this “stalling” has just naturally fallen in line with that.

Last week I went out for lunch with my friend Toni, whose beautiful daughter, Rylie, was taken from this world a few short months ago.

For those that have followed our story, Rylie was Violet’s main “partner in crime” in her cancer journey. Rylie, who was three at the time of diagnosis when Violet was eight, battled the exact same disease (stage four, high risk neuroblastoma) as Violet did. Same 18-month protocol, with Rylie a couple of months behind. Rylie participated in a study that Violet was intended to do, as well, but wasn’t eligible due to an original interference from her blood pressure medication with the MIBG scans used for neuroblastoma assessment. The clinical trial was to validate the effectiveness of an MIBG therapy in development for the treatment of the disease, particularly in recurrence.

Rylie “beat” cancer. Both Ry and Violet rang the bell, together, to celebrate. Then only months later, Rylie developed serious lung complications. Those complications eventually became too much for her to handle, and that sweet child succumbed to the struggle.

Unimaginable.

And yet, there we were, two mothers, on different sides of the impossible, having lunch. Living, for whatever that may feel like. Look like. Having our own experience in the moment, with shared stories to connect us, and yet miles in between through the distance of story and grief and loss.

There are no ways of reconciling that distance except to honour it.

Grief and loss and pain and fear are truths, but they are not universal. They are interpretations. They are experiences, and experiences are fundamentally relative. And yet we connect. We find places of understanding and compassion and connection, even when our lives take on such different shape and color.

I reflect on this today because I have been living with bated breath. The truth is that we don’t know for sure what Violet’s results are yet. “For sure”. We had a PET/CT scan done to evaluate her cell activity – not a perfect test, and because neuroblastoma doesn’t “go away” (many of the cells remain after treatment although not active or malignant), it is more for comparison than of identification of tumor cells. It is a test to see if there is new growth, new activity. And for Violet, some things lit up. There was “activity” (inflammation) in her sinus cavities and jaw. There was “activity” in her abdomen, her hot spot for the disease. There were things to take note of.

And yet, I still felt like I knew “for sure” that she was ok. Although it took until the next day to notice it, the oncologist suggested that she might have a head cold that would account for the inflammation in her face (the next day her nose was a faucet). She also assumed that the inflammation in her belly could be due to a tummy bug, which Violet suffered from quite violently a few days the week before.

These were reasonable explanations for the results. They could be enough to let soothe the fear and move on. But our oncologist is scrupulous. On top of that, there have been multiple loses of children recently in the oncology ward, many under her care. Vigilance felt like it was at an apex. She wasn’t letting that be enough to finalize her report. “We’ll wait for the urinalysis,” she told me after updating us on things. Neuroblastoma activity can show up as catecholamines – chemicals produced in some cancerous cells. If the results of this test showed no concerning traces, then we could assume the swelling was because of seasonal infections with confidence.

Confidence in a belief is not the same as conviction, but it all falls on a sliding scale.

As of today, we are still waiting. The urinalysis machine broke down last week, meaning the results we were already waiting for for over a week were delayed even further.

But how much evidence do we need for something before we decide it’s the truth? How much of our lives do we actually live in with absolute certainty about ideas, assumptions and outcomes?

Not a whole lot.

Sitting on the other side of the table from Toni, I had a thought that solidified this understanding. Her daughter has passed – our little Rylie doesn’t have to worry about pokes, or procedures, or unknown possibilities. There is no more uncertainty about her outcomes. There is relief in that, though the thought of having her here to hold makes it difficult for that relief to land in the heart. The only certainty we have is in things that are already true, things that have already happened. But all life is moving forward, and in one way or another, we move forward blind, only armed with assumptions, predictions, hopes and fears.

Violet’s cancer has a very high rate of recurrence. For the next 3-5 years at least, we move forward grasping at straws that give us pieces of evidence to suggest it hasn’t, or won’t, come back. Each scan has a job of giving us direction regarding treatment, arming us with data that can inform decisions to keep her alive. Keep her moving forward.

From day one, we were given a lot of data to make us feel afraid and uncertain. The odds stacked against her were unimaginable, and yet part of me held to what I would call a sense of certainty that it would all be “ok”.

It could have been denial. There is a fine line between denial and faith, magical thinking and hope. Whatever it was, it felt real. When I tuned out the fear and the data and the words, there was a knowing, and that knowing pulled us through days and weeks and months and years of unknown possibilities.

This weekend I will speak at Rylie’s Celebration of Life. I have yet to figure out what to say, how to speak to such a wide array of people that loved her and knew her for so many different reasons and are going with so many conflicting things in their heads and hearts. I want to make sure that my words are honest and true and heartfelt and sensitive and certain. But certainty means knowing, and what the hell do I know? Did I really know her? Do I know at all what my friend feels that lost her? Do I know anything about anything?

Do any of us?

We all wake up every morning having no idea what the day will bring. And then it unfolds, and we are left with the stories of the day that tell us what the truth is about our life and what we can expect. We build certainty on this, on the results of our day, on the stories we tell about what happens to us.

Once I get the results, I will feel like I “know” something once again. Until I don’t, again. Until I am again, eventually, waiting for some results with bated breath.

We make our own certainty. We filter the details around us to make us feel safe or loved or prepared. We decide when we have enough information to “know”, and then we go by that until we have reason not to.

I have had such a powerful experience through this cancer journey, particularly because it has been through the lens of children’s suffering. It is the stories of nightmares, the definition of fear for every parent, the depth and breadth that the heart can endure. It has taught me so much, but perhaps one of the most powerful lessons is to be as much in the moment as possible, because what’s on either side of it is just us trying to piece things together to feel certain. To feel some sense of control. And that doesn’t exist. We can predict, but we cannot command the universe to cooperate. We must settle in when we can despite all of the unknowns. We must live with bated breath, taking in what data we feel matters and filtering out the rest.

For me, in this, the data doesn’t matter as much as the decision to believe. Maybe because I have to – because I can’t cope with the “odds” and the “results” and the “variances”. My approach was a need-to-know-basis with a very low parameter for relevance of information. I didn’t want the jargon and the warnings and the “briefs”. If I can’t do anything about it, then I don’t need to know. Let the professionals deliberate. Let the outsiders imagine worst case scenarios.

And on top of it all, I know what worst case scenarios look like up close and personal. It isn’t “unimaginable” anymore. It is a thing that happens. I can look it in the eye and make space for it. I can see, through the incredible strengths of human will and love and courage, that even a mother can endure the unspeakable.

And so, I don’t wait – not for results, because they will come when they may. I don’t wait for “the other shoe to drop”, even if the data shows that a return is more than possible. I don’t wait for tomorrow to feel ok today, because there is no tomorrow that won’t have another day of surprises ahead of it. There will never be certainty, only moments with stories on either side.

Today I am making my own certainty, for now, for the moment. Tomorrow will bring what it may.