Everything we cherish may burn: love,
cancer, and the Notre Dame
Almost four years ago, if you told me I would be
watching the Notre Dame burn on live TV from a hospital room, I would have
perhaps felt a shiver of trepidation, but laughed. Even 26 days ago, I’d shrug
it off. The Notre Dame is unmovable, impermeable, the survivor of crusades, two
world wars, and the sands of time. My life is busy, often stressful, but
blessed beyond all belief. My husband is healthy, unbreakable, so full of life
he overflows with contagious enthusiasm and touches everyone in his spheres.
I’d pull up
this picture; I’ve just turned forty, and Matt and I are on the trip of a
lifetime, kicking it off in Paris. Getting up with the sunrise over the Sacre Coeur,
and reveling in the sunset splashed on the fortress of the Notre Dame. Living a
bliss suspended in time, the kind so rare and breathy and beautiful that you
take the picture thinking, “this, this moment, this perfect, beautiful moment.”
Our hearts so full and expansive we feel it echo through our cells for the
lifetime to come. And we both laugh, because I feel French and beautiful and light and classic, and my husband, he
of the holey Costco t-shirts and perpetually torn Carhartts, is wearing—what’s
this?—a button down shirt under a v-neck sweater. We will walk to a cobblestone
framed café and not care that we are eating crème brulee for dinner, and drink champagne,
because we are alive and in love and basking
in Paris. The last rays of the
sun will dip behind the Notre Dame’s towers, and late that night, we will laugh
at the beautiful and almost comic absurdity of that picture, and then stare in
silent reverie, because that moment in time—it is ours. Forever.
It’s been less than four years. I finally click off
the TV and the footage, over and over, of that iconic spire plummeting towards
the flaming wreckage of a bastion of history. I sit here, thankful for the lit
keyboard in the darkness, kept company by the rhythmic schew-schew-schew of my
husband’s feeding tube, giving him an excruciatingly specialized cocktail of
calories that will allow nutrition to flow through his veins without blowing
his thoracic lymph duct wide open and creating an urgent rush to surgery. I
listen to his breathing, sometimes ragged, sometimes with a gurgle, but
constant, comforting in the jagged edges that seem almost defiant against the
quiet whir of suction and the rhythmic prayer of the pump. More than anything,
every time he chokes a little on the saliva that he can not yet swallow, I hold
my breath and pray that the wave of nausea will not hit, that I will not be rushing
to grab the emesis bag and get him upright enough for the heaving discharge of
the calories he has fought so hard for, 250 CC’s at a time.
This is a dance we have been performing for days—too
many days now, no matter how short the time—and I am ready to stop spinning. I
am ready for the room to stop spinning for him, for the drugs to leave his
body, the tube protruding from his nose to be removed, ready for the simple,
small, and somehow most important sip he will ever take in his life, the first
time he can swallow a cool sip of water. I am ready for a sleep that lasts more
than 45 minutes, that’s not haunted by the worry of my husband choking on his
own blood from a ruptured surgical site, or the sudden overhead light of this
blood draw, or that vital sign check. And mostly, even though I know we’re just
starting this journey with a giant surgical step, I’m ready to say goodbye
forever to cancer.
This is the thing I cannot have. Like the spire that
has crumbled in the abyss of the nave, we now carry this scar forever. We fight
fearlessly knowing that the pinnacle of what was before is gone, and the damage at the site will remain. We fight
for what still stands, and for what we will build in the future. This is not
said in defeat, but rather in defiance. We two have stood in awe of the scar of
the glacier that crumbled, revealing the perfection of the ice wall beneath. We
have seen the landslide, after it rakes and scours the hillside, bloom with the
impossible heaping troves of foxglove, fireweed, arnica and phlox, each tenuous
new root claiming a spot in the cycle of rebirth.
The details have been said, and I am tired of reliving
the impossible. A swollen gland on his neck in the space of 5 hours becomes
Stage III throat cancer with metastasis to the lymph system. He goes back to
finish his last shift for a while despite the diagnosis, and I carry this
terrible secret through a night with the children. We do not tell them until we
know more, until we have the plan and the roadmap that we feign comfort in,
knowing we will redraw it at every turn.
Between the two of us, we have nearly 45 years in the
fire service, and at night, I wrestle with this. I love my job, my service, and
in hot angry tears, all of a sudden I hate it, because it threatens to take
that which I love more than anything. I waited 35 years for you, and 9 is not
enough. He pleads with me—don’t hate the job, because the job is what I am. I
know this, because this is in my blood, too. But which fire was it that woke
the angry cells in his body? Did he decon enough? What about the diesel fumes
that bathe our gear, our skin? That picture of him on a conflagration, white
teeth flashing brilliantly on the biggest of smiles, his face slightly sooty
and sweaty from a job well done- could it be that one? Will the job he loves
more than anyone I’ve ever met take him from me? Do I have those same cells
threatening a deadly unfurling in my own body, waiting to smother from the
inside? All these questions, they tear and cloy for the few short weeks leading
to surgery.
Our insurance will tell us that they no longer cover
this; it’s an on-the-job injury. We are told by a labor attorney that our
worker’s comp likely will not cover this either, and we find out despite throat
cancer being presumptive, only one—ONE—case has been covered without question.
We will gasp and rage and wrack our every last nerve reading that so many of
these cancers, supposedly presumptive, go uncovered.
We will be
floored when the surgeon gives a preliminary figure of $130,000 if all goes as
planned. Our labor attorney tells us not to worry, it will be covered one way
or another, but I still check the balance of the mortgage and the current
valuation of our home. We are now in the hospital 2 more days than planned, and
there’s no telling when we will go home. That figure has grown like the cancer
cells that threatened to occlude my husband’s airway. We have wrapped our minds
around surgery, radiation, possible chemo; no one could adequately warn us of
the side effects of bureaucracy.
The day of the surgery will come, and I will unsuccessfully
try to hide the tears threatening to spill as they wheel the love of my life
away. In a moment of unwitting comedy, shortly after they push the first medication
and wheel him down the hallway, he will see a flashing light above the door,
exclaim, “firetruck!” and start making siren noises. This is the last thing I
will see and hear of my beloved for 7 hours. A robot, a brilliant young
surgeon, several surgical residents, and a team of literally a dozen or more
people will take up the mantle of this fight for him.
The days that follow are a blur, leading to this
moment by computer glare in the dark. There have been setbacks, and my heart
cracks a little deeper seeing the perpetually joyous face of my warrior husband
absorb the updates and realize that everything from here will be different. Not
necessarily worse, but… different. There will be news of a surgical complication,
a rare potential that he has unfortunately encountered. The morning his drain
runs milky we will silently sit in fear, and I will lie about what I have read,
about morbidity and immunosuppression. He will know I am lying, and squeeze my
hand and smile, regardless. We’ve got this, he’ll say, before the pain becomes
stifling.
Fevers will
come and go, and I will learn how to override the nurse’s monitored regimen to
check his temperature, just to reassure myself. When the wave of ever present
nausea crests to the first terrifying vomiting, I will hold my breath the
entire time, until I see it’s just formula, and no blood. A surgeon will tell
us that the back of his airway looks “like someone took a blowtorch to it.” I
will be haunted by the eschar I have witnessed on the bodies of the dead in
fires, and yet, I will continually think of it, praying for it to hold with
every retching. I will hold the nurses in near biblical esteem, for they hold
the key to his comfort and the ear of the doctors. I will have to accept that I
am utterly and completely not in control.
It’s late, the air is dry, and my eyes burn with the
effort of trying to see in only the glow of the computer screen and the
blinking lights of the monitors and pumps. I look down at my phone to check for
messages from the kids, and see this “All is Not Lost: Firefighters Able to Save
Notre Dame’s Main Bell Towers.” I dig in my phone for this photo, taken the
prior to the sunset on that day nearly four years ago:
Here’s the thing. This fortress, this bastion of
history, she is forever changed today. This is what remains, and it will be
smoke-stained, smoldering, and scarred. For weeks firefighters will be
monitoring her, watching for hot spots to smolder and flare, and for months,
perhaps years, investigators, architects, and planners will pour over her every
inch. Her spire has fallen, crashing into the abyss, and taking with it some sense
of innocence. People around the world will mourn in pictures, songs, and prayers
for what has been lost-- the same sense of safety and surety before planes flew into
towers, and the same perfection of moments you find yourself taking for granted
before you hear the words, “I’m sorry, this is cancer.”
I look on my phone for news, willing the words I know
are there: “President Macron: We Will Rebuild.” Of course. The bell towers hold
strong, fierce in their defiance of destruction, and determined to ring into history.
At least, this is the story we give them, because it is all our story.
My husband breathes rhythmically, the whirring of the
pump a gentle reminder. Sustenance. Tenacity. Resolve. I take his hand in mine,
even as he sleeps, and feel the gentle squeeze in return.
