Tag: Glioblastoma

I have months to live, perhaps two, perhaps some other number, the doctors won’t tell me. They can’t. They do not know. Instead, they talk about “response to treatment,” clinical trials, science with an aperture of hope.

Some days hope feels puerile and unproductive, unmatched by the reality of this brain tumor, which formed in my left parietal lobe, expanded to my cerebellum, and is currently spreading down my spine. It is a base and primal thing, unaware, or unconcerned, that it is draining my capacity to remember names and places, follow recipes, descend an unrailed staircase, walk in a straight line ― that it will kill me.

Forty-four feels horribly young for a terminal diagnosis in an otherwise healthy, active body, and for glioblastoma, in particular, the cancer of Ted Kennedy and John McCain, old men in the sunset of life. It has been a long time since I have been considered young in a medical capacity ― me of the “geriatric” pregnancies. But here I am, young and old, losing my life minute by minute and my memory even faster.

In many ways, over many years, I have trained myself to forget the present as it occurs, or not let it register in the first place. This began in fifth grade ― the year my dad departed under the guise of temporary separation, taking the necessary steps to launch his academic career in California.

My brothers, sister and I slowly woke to the fact that we would never again all live under the same roof. We stayed put in Ithaca, the place my dad had uprooted us to in pursuit of that critical, door-opening, life-altering Ph.D. With the pursuit over, the objective achieved, he was off and I was stranded in the same split-level house we had helped scrub the pet stench from three years earlier. “Don’t worry, this is temporary,” my dad had promised 7-year-old me. For him, yes, but I lived there until the summer before I left for college.

I learned to live outside my body ― or perhaps deep within it ― willing myself inaccessible, unmoved. The summer before high school, I lived with my dad. Left to my own devices, I explored the woods and set off on runs along busy roads. Ordering my head steady, my eyes dry, I pretended not to wince at the catcalls or startle at the car horns from men who tried to get my attention.

I cultivated detachment as a skill ― a shield against pain, discomfort, exposure ― muting even the sound of my own name yelled down a hallway. “I called to you after fifth period, but you didn’t even look up,” my sister exclaimed. I had no recollection of it. I was pulled too tightly into myself, closed off, shut down, unable to decipher what exactly the world thought I offered and to whom.

This separation continued, driven by habit, not desire. I remember stumbling upon a late-night study group on a Saturday night in college. Surprised by the interruption but unconcerned, their focus already extended deep and wide as they raised new questions, consulted additional texts, rubbed their temples, shrugged, laughed. I remember wishing I could stay there with them and just listen to what they said in the night. Instead, I lurched back outside, toward the noise, the sticky floors and plastic cups of fraternity basements, the sense that I was a walking shadow, putting one foot in front of the other without desire or destination.

I spent another decade feeling divided and incomplete within myself without making any significant changes to remedy that. In my early 30s, I moved to Florida to run an office transition, despite wanting to stay in New York and change careers. Isolated and adrift, I played the part of competent manager during the day, while at night I lay awake wondering how I had gotten so off track. I drank to excess and was pulled over for erratic driving. I thought this would undo me; instead, it forced me to confront and rebuild.

I joined women’s groups and built critical friendships. I learned to tell the truth about who I am and what I need. I switched jobs, then careers. I stopped believing there was something fundamentally broken inside me that could not be fixed.

I settled in Brooklyn. I married the man I had fallen in love with years earlier when celebrating my 25th birthday at an Irish pub in Manhattan. I learned to give honest answers to essential questions, such as, “How are you?” “What are you thinking?” “How can I help?” I gave birth to two children who fill my life with joy and love I never let myself hope to have. We built a family.

And then, last December, I lost the ability to write. I showed my husband my spelling errors and nonsensical scribble on our holiday cards. “I don’t know what’s happening to me,” I sobbed. The next day in the ER, we learned I had a mass in my brain. It took another two months to learn the diagnosis of glioblastoma; longer still to understand just how powerful and unrelenting these tumors are ― mine no exception. Suddenly, this body that once ran marathons and traveled the world could no longer be trusted to carry my daughter into school in the morning or up the stairs to bed.

Now, we are told I may have just months to live. It is devastating in so many ways. There are so many things I still want to do ― hike Mount Kilimanjaro, speak fluent French; so many things I thought I would be ― a novelist, a grandmother. So many of life’s moments ― First Communions, sleepaway camps, travels abroad ― I thought I’d prepare my children for and help usher them through. But I can’t. Not with any certainty.

Yet, I accept the terms because it means I get to be here with them ― my beautiful family ― a little bit longer. I get to be with them in the world. I get to be alive in the world.

And that is what I have finally internalized ― the incredible gift of this life’s journey, and the ability to be fully present within it, living, loving, hurting, grieving, discovering. Being. Because even though life can be hard and cruel and painful, it is still incredible. And we get to experience it. We get to live it. We get to be in the middle of it. Yes, it often takes something profoundly difficult, something life-altering, to see this clearly, but what a thing to see and to know for sure.

I will continue to wish for the nearly impossible ― a cure, a breakthrough, a decade ― but plan for and prepare my children for the increasingly inevitable ― the loss of me. I will live with an eye toward what is next ― for them, for all of us ― and ensure I embody the lessons I hope they will carry within them.

What I hope for them ― what I wish to convey to them and want anyone reading this to consider ― is this: cultivate the courage and ability to be fully present in your life, the joy and the pain. Let the hurt and disappointment ― even rage ― of my decline and death and all of life’s heartbreaks and struggles strengthen you and open you up, rather than shut you down. Gravitate toward connection over isolation. Find those lit rooms of earnest conversation in the night. Explore your evolving truths about who you are and what you want and what you need. Don’t let decades pass only to realize you haven’t been fully present and you don’t remember who you have touched or loved. Look up when someone calls your name.

Elizabeth King is a mom and former educator living with glioblastoma.

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