Love (and Google) in the Time of Brain Cancer
I should be eating lunch, but instead I’m looking up brain cancer statistics.
Melissa was 14 weeks pregnant with our second child last fall when she started having bad headaches. We naturally assumed these were yet another cherry on the puke sundae of pregnancy symptoms, but the headaches persisted, and then got worse. Soon she was vomiting and shouting in pain while clutching her skull. On a Friday evening when we were supposed to be on the road to Charleston, South Carolina, to celebrate our wedding anniversary, we instead took a trip to the ER. As the ashen-faced doctor told us that there was a large mass in Melissa’s brain, two new avatars entered our lives: The Tumor, and what we came to nervous-laughingly call Google Neuroscience University.
Thankfully, Melissa was diagnosed with a “good” form of brain cancer, a term that gives extra poignancy to the phrase ‘it’s all relative’. Her prognosis is favorable, but carries with it an exquisitely torturous cone of uncertainty; my brother likens it to trying to forecast a tropical depression churning a thousand miles out in the Atlantic. It could peter out; it could devastate. Melissa just turned 33. The options range from she could live for a decade, or within a decade they may have a cure and she’ll outlive me. At any point she may begin to experience neurological deficits either caused by the cancer or, if radiation is needed down the road, the treatments. This radical uncertainty collides with an era in which the accumulated knowledge of the world’s medical community is accessible with a few clicks.
Googling to predict the future is perhaps just the modern form of throwing sheep knuckles or consulting tea leaves, but it has the veneer of being more enlightened. So I consume journal articles and message board anecdotes in a dizzying binge. If I can just place her specific circumstances on a spectrum somewhere, pin the tail on the actuarial donkey, perhaps I can settle my jittery mind. Except that it’s impossible. These genetic markers are good. These markers of higher malignancy are bad. The extent of the resection is good. The pre-operative size of the tumor is bad. Then a Google Alert hits my inbox with new trial results that warp the odds, so start over anew… And so I go, chiseling my way through an unyielding wall, hoping to Shawshank out someday.
What I really want to ask Google is:
“Will she see the girls graduate high school?”
“Will I dance with her at their weddings?”
“Will we hold a grandchild together?”
“For how long will she be whole?”
I have periods where I can let it go, and periods where I’ll let something slip and she’ll look at me sharply and ask, “Have you been researching again?” As if neuroscience has become my drinking, my porn habit; which, symptomatically, maybe it has.
Someone on one of the online support groups commented that it took a long time before she was able to “stop wearing the cancer more than” her ill spouse did. I’m conflicted on that point. On the one hand, I do think Melissa tends to have an attitude conducive to living fully in the moment. I’ll always laugh at her relatively laissez-faire feelings toward the regular MRIs that show whether or not everything’s stable in there. She jokes about “Schrödinger’s Tumor”: Either it’s already grown, or it hasn’t — the scan just opens the box. She doesn’t let her cancer define her, and I admire and am gladdened by that.
At the same time, I feel that one of the roles I play for us is keeping a finger on the pulse, watching the radar to see how the storm’s tracking. This is an area of medicine with a rather “soft” protocol for treatment, and because of the unique circumstances of Melissa’s case — a delay in post-surgery treatment due to pregnancy — she’s an ‘n’ of one: She doesn’t fit the model of any of the research. (My wife is in all things a unicorn; I’ve always been drawn to her unconventionality, so why not here?). As a result, we, the patient and family, have more decisions ahead of us than most. It feels incumbent to have as much information as possible, be prepared to ask the right questions, weigh the values properly lest we unwittingly choose a path that cuts out years earlier than its crossroad.
That may all be bunk, by the way — a weak post-facto justification. Another narrative says that rubbing worry beads feels good. That I am letting myself wallow in an unhealthy bog, that my remembering self will look back and curse at missed opportunities to be completely present during these, what should probably be considered the halcyon days. After all, it’s hard to know how long they’ll last. One of brain cancer’s particular brutalities is that everything can be going great until it’s not.
I don’t know if this is true, but I suspect we in 2017 are worse at handling uncertainty than in epochs past. Uncertainty was a constant companion in eras when the weather was a total mystery, to say nothing of whether a loved one would recover from a simple fever. People adapted to that anxiety with religion and philosophy, or maladapted with whiskey and going mad. Yet nowadays the main response to uncertainty is to try to fight it like a monster rather than come to terms with it like an unpleasant roommate. We have multiple weather models that can converge on a projection. We have Kaplan-Meier survival curves for diseases. We have data, our new rain god.
I wish I could say that I have reached some sort of equanimity, but the truth is more days than not feel heavy. I try to return the words of the great scientist Stephen Jay Gould, who wrote in his missive The Median Isn’t the Message, “all evolutionary biologists know that variation itself is nature’s only irreducible essence. Variation is the hard reality, not a set of imperfect measures for a central tendency. Means and medians are the abstractions.”
Meaning: Who the hell knows? My wife is one of a kind.
I Google, in the end, because I want her in the world and by my side as long as possible.