The Fickle Boon of Uncertainty

Winter snuck by us, a few bouts of snow and frigid air between Christmas and Easter only mockingly reminiscent of winter last year, which came with a roar and didn’t budge, reluctantly giving way to spring. By contrast, even just at the turn of the New Year, spring felt close at hand. We were unfortunately fortunate enough to be away much of this disappointing winter; as skiers, we weren’t missing much back home while we skipped off to Hawaii and, not long after, the Bahamas to the resort Atlantis. During the latter trip and the visit to Camp Sunshine in Maine soon after, the shadow of the fateful MRI in Dallas tracked us. The cold invisible fingers of that news, the dreaded and relentless progression of disease, were impossible to shake off, even in the warmth of the blinding sun.

In the wake of that scan, we had planned to pursue some kind of treatment that would extend Colin’s quality of life. A smattering of dissonant opinions left us picking a narrow path in a valley, unable to latch onto a plan we felt would provide benefit with sufficiently low risk. As we weighed our options, the shadows deepened. Visions of the increasing edema and the creeping lesions, illustrated in the MRI in shades of gray, returned mercilessly to my mind’s eye. During the first few days at camp, Colin was unusually tired, complained of a headache, and fell asleep early. That clinched our decision, and Dr. Gajjar suggested we have an MRI done for palliation purposes.

Those days were infused with the same overwhelming sense of foreboding and, more acutely, immediacy, that haunted us in December. Colin’s continued good health, incorrectly presumed to be the boon of the everolimus, had given us hope that whisked us from the painful and poignant frenzy of the weeks that followed our return from Boston. Things being what they are, we are prone to being easily and violently buffeted from one state of mind to another.

By the time the MRI was on the books, Colin had perked up and Aidan took his place on the couch, afflicted with a booming headache and fatigue. Those early symptoms of tumor growth suddenly reframed themselves as the innocuous appearance of a virus. Colin was a champ in his first unsedated MRI, and we made it a quick trip in and out of Rochester. Though we had low expectations of the scan (everybody was clear that the tumors had certainly pressed onward in their mathematical takeover of Colin’s brain), we discovered that the tumors had not in fact grown at all during the three weeks since the MRI in Dallas that disqualified him for the clinical trial.

I was elated, if only because it meant we had stolen more time, but it quickly dawned on me that the everolimus may have been working, despite the progression evident in the previous scan. This idea didn’t compel most of the doctors we were consulting with, but I ended up supporting my argument with the case history of a girl in Australia who has a very similar course with a very similar presentation of the disease. Her progression on the drug (an older generation but in the same family) was enough to necessitate surgery to remove new tumors on the spine. During the five week hiatus from treatment for that surgery, the family was surprised to discover that her tumors had stopped growing altogether.

Was this because of the drug or because of suspending it? Faced with a question that mirrored our own, they opted to restart the medication, her disease remaining stable until she ultimately succumbed not to cancer but to sepsis from pneumonia. At the time, the cancer had still been held at bay. For Colin, this family’s sad history represented renewed hope that we could put the brakes on his disease. That hope is an unexpected gift from a young lady we have never met. Her tragedy becomes something beautiful, a connection between families on opposite ends of the globe and a reminder that life can persist, even after it fades.

Denial, More Than a River in Egypt

So life began anew for us, and we had permission to yet again stumble through our days in a state of denial tinged deeply with the awareness that reality will again come crashing through the wall. Hope and denial are profoundly intertwined, a partnership that allows us mortals to exist simultaneously in multiple realities. We need it because the future that looms is both too terrible to steep in and too salient to ignore. It is the anchor that alternately weighs us down or keeps us moored in the storm. The difference between the two is hope and the enchantment that hope conjures, delivering us into a warm pool of oblivion that embraces with normalcy and the permission to allow time to elapse.

Even if the everolimus proves yet again to be a bust, these weeks where we can believe that fate is on hold are worth it. This is the lesson that the doctors don’t intuit, that the value of a decision and a treatment do not find their merit entirely in MRIs and lab values, and they may not even be measured in added days of life. The hope and breathing room that a new prescription of everolimus brought our family are an unexpected but very graciously accepted gift.

Our timeline is yet again wildly unpredictable. I am grateful that we have done most of the hard work in preparing for the future. I could say preparing for Colin’s future, but even I can’t brandish irony deftly enough to fend off sentimentality in assembling those words. It is not a future worthy of a child, which is why the preparation — the burial plot, the funeral home, hospice services, and more — so importantly relieves us of the onus of managing everything at once. We needn’t dwell prematurely in the places that fate will carry us to.

Last week, after Colin went back on service with hospice, his nurse reviewed the pack of refrigerated emergency medications. Fortunately, I’m familiar with the drugs and the medical issues they address, so I was not being grossly negligent when I hurried through the detailed discussion of the arsenal of tools that bring comfort at the end of life. For a while, when I really had to grasp and accept this thing, it was important to let my mind go to that place and contemplate probabilities and possibilities. Now, I cannot bear it and there is no point. I don’t have to maintain the landscape of scenarios in my head. The thought of it, even just laying the words next to each other on the page, draws anxiety into my gut, the apprehensive tingle of my body bracing itself to adjust to change. Not today.

The Misnomer of Daylight Savings

Like so many people, I dread the antique practice of daylight savings. It saves nothing. Instead, it bestows the counterfeit gift of a bonus hour in one season and the backhanded slap of jet lag in another.

What I do not share with the many opponents of daylight savings is a disdain of the artificial postponement of dawn. I do enjoy plunging back into darkness, the early morning reclaimed by the stars and the blanket of night as I groggily start my ritual of the day. It feels like stolen time, something I have come to relish keenly.

One season passes the baton to the next and I am still a thief absorbing memories as they float by, scoffing the progression of the clock. Without the insistent pressure of counting the seconds, it seems easier to breathe and live and allow the most precious of moments to materialize in front of me in their mundane glory. We string together noteworthy memories like beads, yet even the prettiest beads would be a scattered mess without the string. Unglamorous interstitial experiences bring together the rest, and it is nearly impossible to live those moments when rushing from one priceless memory to the next. As I experience this, the less priceless memories are becoming ironically more significant: the evening snuggles; the declaration that the hallway of the mall looks like a bathroom (it does); the sound of Aidan singing in the bath, the squeak of his skin against the cast iron tub. Life never yields more bliss than it does when nothing is happening at all.

Ithaca being what it is, the night sky is often a muddy fleece that gives no hint of what lies beyond. No glittering stars or constellations — not even the moon — greet me. March brought with it mornings thick with mist and a cloying chill that served as a reminder that winter had not yet bowed out completely. When the sun arrives, the murk often clears and the clouds resolve into fluffy whiteness, a dreary beginning faded into memory.

Not long ago, I met a sky that was uncustomarily clear, gleaming ebony scattered with the stars I had been missing and the heavy orb of the moon. I hadn’t even noticed it wax to its current state from the cat’s claw sliver I had last remembered. It can all change in an instant, with the realization that you have reached a destination you hadn’t realized you were approaching.

Is this the curse of the oblivious or is it a lucky stroke, to realize suddenly that days have passed under cloud cover? The sky was always there, the moon shifting without comment through its phases. We can stop none of it, either by willing it to be so or by ignoring it, but we can give ourselves over freely to the illusions that make themselves available by happenstance. So then does the hardened skeptic become a gullible rube, willingly caught in the spell of a magician’s tricks. The moon will reappear, but today it is gratefully obscured and I don’t care to guess how much it has fattened since last we met and the sky divulged its bitter secrets.