On Being Caught Between Cancer and the Coronavirus
A spark. Une étincelle in French. This is how my father jams timid hope into a conversation recounting his new reality, one where brain metastases have robbed my stubborn and capable stepmom from all agency. But Dad’s trademark optimism returned against all odds the minute brain radiotherapy started and I don’t know what to make of it.
“I’m hoping for a spark, you know?” he says and no, I don’t know but I’m certainly not going to tell him that. I acknowledge his words with a vague sound and keep listening.
I’m not privy to any of the details, I only know what my parents tell me, and by parents I mean Dad as my stepmom can barely speak or indeed keep awake. For all our bluntness, my father has always been the king of spin to try and protect my stepbrother and I. And much as I should be in Paris to help them, I’m still in the Netherlands due to the unforeseen global public health crisis that is the coronavirus.
You can’t put love on lockdown and yet this is what the coronavirus outbreak is forcing my family to do.
My stepmom has stage 4 cancer, her immune system is a memory that predates the beginning of treatment in September 2018, and contracting the virus could kill her even faster. More than likely, she’s already dying and now there’s no telling whether we’ll even have a chance to say goodbye as what comes next is very fuzzy.
“It’s the beginning of the end, darling,” she told me on Sunday, in a very small voice so resigned it was hard to gauge whether she still had any fight left in her. “I don’t know how that’s even possible but I’m more tired than ever,” she said, “and yet all I do is sleep. Apparently. Your dad tells me I sleep but I’m no longer aware of it.”
Unlike the previous time I spoke to her, her Southern French lilt hadn’t completely been erased by exhaustion and corticosteroids this time but it was barely there. And even though Dad was sitting next to her and tried to inject some cheer into the conversation, his was the voice of defeat, so flattened I struggled to keep him on the line. Back then, we were waiting to find out when brain radiotherapy would start.
I have no doubt my stepmom is fully cognizant of what’s happening to her even if she cannot vocalize it. And it has likely been happening for far longer than she let on. Although Dad is still in denial, that’s the reason my parents battened down the hatches the minute I left Paris at the beginning of February.
My stepmom started using a cane even indoors the very next day, something she couldn’t bring herself to do when I was there. Barely a couple of weeks later, she was bedridden, unable to stand, eat, or drink.
Since then, my parents communicate because they have to but only with those they can’t ignore like my stepbrother and I, and then as minimally as possible. The terms are clear: Do not call us, we will call or text you.
Messages are welcome but in moderation. They check their cell phones a couple of times a day, and WhatsApp’s “last seen at” feature, just below the user name, is the most reliable tool I have to get a sense of what’s going on. When Dad tells me he’s going to bed right after our call at 11PM and I see him still online at 1:30AM already reading my morning messages, I know we’re both as restless as each other.
I have to think hard before I send anything, trying to strike the right balance of inappropriate and uplifting because we’ve always been blunt people. Since my stepmom is amped up on drugs that can induce euphoria, I sent her this classic Belgian pop anthem with the most surreal video I could find.
“It’s not today que le ciel me tombera sur la tête,” as Plastic Bertrand sings. It’s not today the sky will fall on my head.
I take silly snaps wherever I go to cheer my parents up as North Holland is very picturesque. Also, one of the neighborhood cats has adopted me so we go for walks around the square and by the canal together, which I duly document.
Before I’ve even had a chance to ask again, my father tells me to remain in the Netherlands and goes on to explain my Paris-based stepbrother has been told to stay home, too.
For him to be so close yet unable to go visit his mom must be utter torture and I can’t begin to imagine what that feels like. We both know our parents could really use an extra pair of hands, companionship, and comic relief.
We can hear it every time we speak to them.
For my part, I’m haunted whether I’m awake or asleep, my brain replaying one portentous scene on a loop. When I was still living out of a suitcase in motion last year, I arrived at my parents’ condo one night and found an ambulance in front of the building door. When I pressed the elevator button, the display told me it was on the 16th floor, the floor they live on.
As it turned out, the paramedics had come to take one of the neighbors to hospital for treatment. I nearly vomited with relief that day, my parents amused at my ghostly face. Back then, they were “fine,” an adjective whose meaning cancer redefines in innumerable ways for every patient.
Now the ambulance is my parents’ new mode of transport, Monday to Friday.
My parents’ strict no visitors policy extends to almost everyone, including close friends who live in the same condo building or across the road. The only folks allowed in are medical personnel.
My father is oddly comfortable with cancer but terrified of the coronavirus, which to him represents something concrete, widespread, and shared unlike the very private horror of the amorphous thing killing his wife. Although the day oncology ward at the hospital is always packed, it’s an alternate universe for my parents, unlike the universe of TV news and the illness Emmanuel Macron called an epidemic.
“I leave my mind at the door,” is what my stepmom has always said. She detaches the minute she sets foot inside the hospital. This is how she copes.
To Dad, the coronavirus is both a tangible fear and a form of denial. While there’s no ignoring metastases have now spread to his wife’s brain affecting balance and speech, he prefers to worry about the same thing as everyone else.
COVID-19 is more intellectually manageable than the brain radiotherapy and the potential side effects thereof. Since we have the coronavirus in the Netherlands too, Dad is using it as an excuse to try and protect me from the unspeakable even though I’m a lot more fluent in death than he will ever know.
And his wife and I are closer than he ever understood.
We’re all running out of words to describe a rapidly changing reality that escapes us all. No matter how long you’ve had to prepare for the death of a loved one, it’s never enough time and we’re not ready to let go although my stepmom may be.
And she wants to make sure Dad will have support and that’s one of the reasons I moved back to Europe from the US. But if I’m to respect my father’s wishes, the coronavirus outbreak makes it impossible for me to be by my parents’ side when they most need help.
This isn’t helplessness, this is full on alienation.
I have zero problem risking Dad’s wrath to put my stepmom’s mind at ease but then again how can I be sure I won’t be the one who kills her? How can my stepbrother be sure? How do we even begin to parse this?
That’s a question no kid desperate to comfort their dying parent should ever have to ask themselves yet here we are, very much asking it.
Because not doing so would be irresponsible.
My parents shouldn’t be going through this alone but at the same time I’m terrified of contacting my stepbrother to discuss it. I’m afraid this will cause him even more distress because his mental health, too, is only hanging on by a thread.
Dad isn’t being paranoid, just practical. I can’t fault his reasoning, he wants to protect his wife and one tangible thing he can do is veto visits. I worry he might take this too far though. I’m never not afraid I’ll get there too late to say goodbye to my stepmom and I know this will cause her immense distress at a time when she should be at peace. And Dad — who is 72 and my stepmom’s sole carer — is literally being crushed alive by the weight of it all. When she goes, he will collapse and I need to be there to catch him.
I know this. My stepmom has told me as much on numerous occasions over the last year, too.
“Your dad is extremely tired,” is shorthand between us. She used it on Sunday as she had used it the time before, what few words she still manages to speak yet another proof of love. And I know my father still believes love can make everything better or at minimum bearable, somehow, his every gesture, his every word a tribute to the life force that binds him to his wife.
To secular folks like us, love is the closest thing we have to religion, presence is the only way we know how to express it.
I’m a French-American writer, journalist, and editor now based in the Netherlands. To continue the conversation, follow the bird. For email and everything else, deets in bio.