What I've Learned From 10 Years of Brain Cancer

What I've Learned From 10 Years of Brain Cancer

Ten years ago, at this moment, I was meeting my brand new fiancé for lunch, to pick out an engagement ring. He had *meant* to get one before popping the question, but he was never the best planner. So we went together on his lunch break and picked out a gorgeous ring with a lovely sapphire. I never got to wear that ring.

Ten years ago, I went home after lunch and answered dozens of happy messages from friends and family, congratulating me on my engagement. I made a bowl of popcorn and changed into my pajamas. My future husband was coming home soon, and the next day we were driving off for a whole ten days. It would have been our first real vacation together. We never went on that trip.

Ten years ago, my phone rang. My future mother-in-law was calling me on my phone, the first time I could remember her ever doing such a thing. She was panicking. Her son, the love of my life, had collapsed during a company softball game. They would call me any second, she said, and begged me to tell her where they were taking him in an ambulance. I drove his car through downtown festival traffic like a woman possessed, miraculously arriving only ten minutes behind his ambulance.

Ten years ago, I ran into the emergency room at Northwestern Memorial Hospital, and said, "My fiancé was just brought here in an ambulance, where can I find him?" It was the first time I'd said the word aloud. Doors that had been closed to me as the girlfriend were now open, and I was ushered to his side. With half his face paralyzed, temporarily as it turned out, he held me and cried, and we told the coworker who had accompanied him on the ride that we were engaged, the first person we had told face to face.

Ten years ago, believing he had suffered a stroke, I waited for the love of my life to finish a series of CT scans and MRIs, only to find masses in his brain. A surgeon with confidence I can't begin to fathom assured me his brain surgery was a "piece of cake," and a solemn oncologist tried to steel us for the likelihood the masses were malignant. They scheduled him for surgery the upcoming Tuesday, after the long holiday weekend.

The events that followed have not reached their ten year milestone, not yet. There is a decade-less-five-days since the surgery revealed not only the truth of malignancy, but its severity. A decade-less-five-days since that optimistic surgeon told me that sometimes you see somebody five, even ten years out with this diagnosis. But not often. A decade-less-five-days since he told me it would be unwise to hope for such an outcome. That the prognosis was 18 months. That the man and woman I barely knew but planned to call my mother- and father-in-law should tell a room full of our families that their son, my fiancé, was going to die.

I must take a breath here, because the truth is I cannot ever tell this story, can't read it aloud, can't even recall it in silence to myself, without my breath catching and my heart stopping as I remember that moment. Imagine it, I beg you.

Imagine you are in love, desperately in love, with somebody who has saved your life and given it meaning and supported you in ways you did not know were possible. Imagine that, despite believing it would never happen, you were going to marry the most amazing person you had ever met, that they loved you and wanted to make your life the best it had any chance of being. Imagine that joy.

Now imagine sitting with their parents and watching them mourn. Imagine their tears, and their anguish, and their confusion, and their grief.

I remember that moment with the same visceral, immediate pain with which I remember being raped, with which I remember being stalked, with which I remember the moment I awoke, drenched in my own blood, at the end of my first pregnancy. Imagine, please, that the world's most confident human being is struggling to maintain eye contact with you, and in the clearest words they can conjure, destroying your life. It would have been kinder if he had stabbed me in the heart. It would have been gentler if he had strangled me. It would have been easier if he had torn me limb from limb.

Ten years-less-five days ago, after waiting through nine-plus hours of brain surgery, I felt nothing. I disassociated in the way so many disassociate during trauma. I did not grieve. I did not panic. I did not cry, although I pretended, to keep up appearances for a moment. Numbly, I chided myself, What kind of fiancée would I be if I did not cry?

Ten years-less-five days ago, the only thing that let me come back to the world, and the hospital, and my family, and myself, was that I opened my mouth and words came out I did not expect or understand.

He's going to be just fine.

I must have looked half mad, wide eyed and trembling and cocooned in the vibrating bubble of disassociated surety. I said it to everyone. It became my mantra.

He's going to be just fine.

Ten years-less-seven days ago, when my fiancé was lucid enough to listen to that somber oncologist, he asked not to hear the prognosis. "Never tell me the odds, kid." He didn't say it, but as he looked at me, the joke was in his eyes. I didn't. I never told him.

And nine years-plus-forty-three days ago, that wonderful, incredible person became my husband.

Eight years-less-fifty-six days ago, he became a father to our twin daughters.

Five years-plus-seventeen days ago, he became a father of three.

And every day, every single one, has been worth that moment. That horrible, heart-rending, catastrophic moment. Every single day, no matter now mundane, no matter how pointless, no matter how frustrating (and the vast majority of those days cannot be described in any of those terms), has been beautiful, and important, and full of love.

My husband has been living with a diagnosis of terminal brain cancer for ten years today, and he is just fine.

In those ten years, I have been pummeled and softened and molded and shaped around the realities of living life with the constant presence of death, but also with the constant presence of blinding love. I am stronger, and braver, but also warier, more cynical, less patient and also less giving. I have learned I have to take, because if I do not take I have nothing left to give. I have learned that while some kinds of love are absolute, life is still hard, still work, and you cannot give up the mundane in order to focus on the divine.

Ten years ago, at this moment, I was the happiest I have ever been, and will ever be. I lived in a world that shone with perfection, with endless possibilities and the promise of love never-ending and the moment promised to stretch into a lifetime I could not wait to experience. Ten years ago, at this moment, I felt a way I can no longer imagine, and I believe I am no longer capable of experiencing.

I grieve for that girl, that naive, optimistic, happy girl. I have a place in my heart carved out just for her. I wish I could thank her. I wish I could go back ten years, and hug her, tell her she is right, the future is unfathomably bright, golden with possibility and love and every perfection. I would tell her that her capacity for love and hope and joy is the greatest strength she possesses, and that she will live happily ever after.

I would promise her the most amazing ten years to come, at least. I would promise them to her, as I know she would, in only a few short days, promise them to her fiancé. And I would smile, my older and more tender heart breaking ever so slightly, as she promised another perfect ten years to me, and ten more, and ten more. She would tell me, "Everything is going to be just fine," and I would hold her words close, as I have every day during the last ten years.

My life is not perfect. But it is as close as any life can hope to be. I would not trade a single day of this decade for anything that exists in the known universe.

Think of my family today, a family that ten years ago was shaped, forever, by a seizure during a softball game. Think of my family, and take a moment to remember who you were ten years ago. Try to imagine what you were doing ten years ago, on this day, at this moment. And promise yourself that if you could, you would also tell your former self that they are strong, and good, and wonderful.

Think of my family, and then think of yours, of your own life, and believe, please, believe with me, that every day has mattered. If I could, I would hold you, too, and I would whisper in your ear, "You're going to be just fine."


Read my more about my husband's condition here: Begging My Congressman For My Family'sLives
Read my latest post here: On Burnout, And Gratitude

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Filed under: Cancer, Happiness, Illness, Life, Love

Tags: Cancer, Love, Reflection

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