How Living With Brain Cancer is like Living on A Volcano

How Living With Brain Cancer is like Living on A Volcano
Me and M in the cancer center waiting room

Yesterday was our ninth wedding anniversary.

It was a perfect evening. We drank our way across downtown, went to a stand up show, and returned to a hotel room where I'd put champagne on ice with a box of macarons.

It was the kind of date every parent of small kids dreams about, a truly child-free evening where you act like you have no responsibilities. We did shots of vodka in a Russian crepe bar, ate tiramisu in a warehouse loft, drank house brews on tap at a Tuesday night performance, pressed ourselves together in elevators and on rainy sidewalks.

It was a perfect evening.

We've had so few of those, particularly lately. Lately, our lives have had the bitter tang of fear to them. Of forgotten pills and missing treatments, of hovering threats we cannot control. We tickle our children and tuck them into bed, and worry ourselves to sleep wondering whether or not we'll be able to take care of them if, or when, our insurance is stripped away. Wondering if, or when, the people who call in "Heil Hitler" messages to synagogues and steal "Hate Has No Home Here" lawn signs will feel emboldened enough to do more. Wondering if, or when, we will have to find ways to hold complex and frightening conversations with our children about the world they find themselves growing up in. If "Daddy has cancer," will be compounded with, "We have no insurance," and "That swastika means we are not safe in our home."

But last night was perfect.

It's fitting that we should have a perfect date, on our anniversary no less, the night before another MRI. The night we got engaged was perfect and the next day M had his seizure, and we learned about the cancer. The night of our wedding was perfect, and the next day he started another round of chemotherapy. Last night was perfect, and now here I am, at dawn, writing from the MRI waiting room. Again.

God help me, I'm hungover in the MRI waiting room. That at least is a first.

In the last few days, crawling up to this particular set of images, I have learned some things about myself.

I am weak, I am fragile, and I am afraid.

These are all things I should have known, must have known somewhere, in some part of my lizard brain.

In these last few days and weeks, I have followed the threads of my unease, back past our last MRI, past the election, the move, the primary, back, back, back, and found my grandmother.

She was healthy, in excellent health, and suddenly she was gone. Something inside me, deeply hidden and thoroughly ignored, broke.

Somebody I loved, who was just fine, had died.

For almost ten years, I've told myself M is just fine, and will not die. I've told everyone he will not die of this, now, because he's just fine. I built a palace of Just Fine, dug a moat around it, put my husband in the tallest tower and lowered the drawbridge to wanderers in a land of fear and confusion. I filled it with pretty things, useful things, with promises and memories and a thousand flames of hope to light every dark corner. I invite others in and say, "Look at my beautiful castle! You can build here, too. You can have all of this."

Now I know I have built my palace on a fault line.

I knew this. I knew. I knew he was mortal, that I am mortal, that death comes for all in its time and there is nothing we can do to hide from the inevitable moment it all comes crashing down around us, and all the things and brightness and promises are nothing but rubble. It could be today. Or tomorrow. But it has been more than a year and a half since I started to understand how shaky the ground is, and it has not moved. Chaos for a tectonic plate is tranquility for human or animal life.

The ground trembles with tremors so faint I did not know whether my vertigo was caused by political upheaval, anti-semitic threats, the hazard of moving and new jobs, or the minutia of life. These do shake the ground. These are real problems, real perils. But I'd forgotten the ground was always trembling.

My husband is just fine, with the caveat that all who are just fine can still, and will someday, die. But, he has brain cancer. It is a fact. It means he is likely to die sooner than most.

All the joking in the world, his promises to live forever, his goal to live longer married to me than not, these are out of his control. He can make no promises. None of us can. But I must live with that understanding, find it again. Remind myself how I got past our first perfect day, our first day in the hospital.

Re-learn how to move past today, as well.

My husband has brain cancer. I need to say it aloud, I need to hear myself say it. Re-familiarize myself with the vocabulary of brain cancer; astrocytoma, glioblastoma, GBM, glioma. Re-apply it to my life in practical terms.

I need to step out of my palace and see it for what it is; a house, no different from any other, as subject to the whims of tornados as any other.

No, more subject. More likely to topple. But still, beautiful and strong and full of joy.

Humans have always lived on fault lines. We have always found happiness in the most dangerous places, stability in the most fraught. We have found ways to control what once seemed uncontrollable, to tame the wild. We are drawn to the beauty of the temporary, we fill our homes with orchids and lemons. We paint sunsets that exist only as we watch, gone forever never to be repeated, frozen in impressions incomparably thin next to the real thing. We obsess over youth, that most fleeting of things. We cut down grass bred to grow as fast as anything. We teach our children to watch caterpillars turn build their chrysalis, turn into butterflies, and fly away.

I am weak, I am fragile, and I am afraid; because that is, in a hidden, animal way, what it means to be human.

I live on the edge of a volcano.

And the flowers are breathtaking.


 

Read more about coming to terms with brain cancer here: What I Know About Living In A Fairy Tale

Read my latest post here: Pretending: A Motherhood Story

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Filed under: Illness, Life, Love

Tags: Anxiety, Cancer, Death, Fear, Reflection

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