When you get a cancer diagnosis, you start to think about the things you wished you didn’t have to think about, like what happens to you when you die. Or what it’s like to die. And you discover who truly cares about you. And then you realize that you can finally let go and release fear, because every day that you wake up is a good day.
I stand in the doorway, on the threshold of a luminous spring day, watching a paradise of birds swarm the feeder. The slanting light tells me it’s nearing sunset, but it’s still bright enough to see the iridescent cardinals, finches and woodpeckers feeding in the sunlight. I watch my husband round the corner on his lawn tractor, a knight if there ever was one, on a steed of fire and smoke, master of this world of birds and burgeoning flowers.
It is perfect, all of it, and all of it is fleeting. I can no more hold on to this picture than I can grasp a handful of water. We’re told to seize the day. Be mindful. Live life to the fullest. As I stand in the fading sunlight with all this beauty before me, I don’t know how much more I can be, how much more I can hold.
Can fullness be measured? Can it be more than it is? Is there any way I can make this last? Stop time and imprint the image on my heart? Is it possible to remain in this state of being forever? And most importantly, continue to be who I am in the process?
What will happen when I die? Will I enter a world parallel to this one? Will I remember these birds, this sunset, my husband, the children and grandchildren I love? The worst thing that could happen would be to cross the threshold and stop being me, with all my memories and experiences. How did this journey begin, and how will it play out in the theater of my soul?
I turn and go back into the house. The luminous moment dissolves. There is a meal to be prepared. A floor to be swept. As I chop vegetables, my attention wanders to the mundane.
The world quit being safe when I learned I had a cluster of cells that were behaving badly, growing where they shouldn’t. Profligate cells multiplying their way around the isthmus between head and chest, holding my thyroid hostage until the only logical defense was taking it out.
It was then I first heard the word cancer, spoken in hushed tones. Not just any cancer, but a particularly rare one, not treatable by conventional means. I learned it would be my dance partner for life, as there is no cure. Its manifestation would sometimes be courtly, sometimes rapacious. Its name was medullary.
My new reality plunged me into a maelstrom of denial. Cancer? I barred the door and held the word at bay. Too late. It was already inside.
Those who have cancer are often referred to as warriors. But I am no conquering heroine standing in a battlefield with the shards of cancer lying vanquished at my feet. I’m definitely not combative. I avoid conflict at all cost. Am I a warrior? Where’s the battle? What am I fighting?
And whether I’m brave or cowardly, I still have cancer.
I find others online who have also received invitations to this medullary dance. Some, like me, have no symptoms other than relentless fatigue, while others are engaged in a constant struggle with a more aggressive cancer that devours internal organs like Pacman’s ghosts.
I feel overwhelmed and isolated. To begin with, I’m new to this support group and haven’t had any long term contact with anyone. Other than cancer, we don’t have shared experiences. Were it not for this St. Vitus’ dance, we would not have met. How many times and in how many ways can I recite my fears? How many ways can I offer comfort to others whom I feel need more than I can give in the way of encouragement, especially when my own world is still so newly minted?
It’s an immutable journey on a road with steep curves and no shoulders.
And while my fellow meddies comprise a voluble partnership of cancer survivors through shared experiences, offering advice, insight and helpful information, I discover that family and friends are largely silent. I want to tell them, “This is what I’m going through. I don’t understand much of what’s going on, but I’ll tell you what I know. Or I can steer you towards further information, if you want.”
Amazingly, they don’t want. Whenever I try to explain something to a friend or family member—such as why I’m tired all the time, or why surgery is often the only option for this type of cancer—the words bounce off a wall of silence. I’m puzzled. And hurt. Do they think my cancer is contagious? Does my demeanor suggest the kind of whiney self-pity that needs containment?
I begin to feel guilty. Had I been such a bad parent and spouse that my family should ignore me? Years earlier I had suffered depression and spent time in a hospital, which had required being away from family, both physically and emotionally, for an extended period. Were my children damaged by my absence and now must sanction me for my chaotic parenting?
Ironically, I’d thought then that I wanted to die. But something inside wouldn’t let go. Something that said, give it a chance. I might not have been the best parent or friend, but I did the best I could at the time, and when the chips were down what I had to offer was faith. Faith that there was something bigger than this narrow world I had created, faith that even when all seemed hopeless I had to trust otherwise.
And so it came to be that despite the bleak landscape in my soul, I climbed up and out of that black hole and emerged fully among the living. Was my legacy of triumph over self-destruction now overshadowed by this new threat of death?
I push irrational thoughts aside. First, death is inevitable. If not cancer, something else will take me. We all pray to die peacefully in our sleep, but life offers different scenarios. I’d like some insight into what lies ahead, come to terms with what it means to live in a world that I feel interpenetrates this one. How do I stay awake after I’ve crossed the threshold?
Because I believe that family and friends care about me, I resist the temptation to feel sorry for myself. Perhaps they’ve just discovered the elephant in the room, and it’s threatening. Best to not look. Hadn’t I always been the strong one? Hadn’t I gone through life taking care of the needs of others? Hadn’t I been the one who never asked for help because I saw it as a sign of weakness? Because I’m not displaying the usual cancer symptoms that come with radiation and chemotherapy, I appear to be healthy. Must I continue the exhausting role of being strong?
Years ago I was with my father as he lay dying. While he was able to speak he told me he knew it was his time, and he was at peace. Then he recited a story about when I was a little girl gathering eggs, clutching the basket to my chest and declaring that there were many more eggs in the hen house, but this was all I could carry.
My heart seized up. I held his hand and waited for more. I wanted words of wisdom, a final insight into how he’d managed to embrace life despite all the hardships he had endured, not some silly story from the past. But these were his last words.
Not long ago my son came to visit with his twin five-year-old boys. The kids played outside in the early spring weather while I watched from the sidelines. They were so full of life, so exuberant. Then one of the little guys came up to me and said, “Grandma, are you alright?” I assured him I was. When they were getting ready to leave, my usually reserved son said he was going to give me another hug before he left. And he did.
And then I knew.
Not all language is spoken. We don’t always hear what we expect to hear. Why should I assume my father or my son would communicate differently? My father’s last words were an act of love. He preferred acting to speaking, and his story was a pictorial farewell. Its power would sustain me after he was gone. My five-year-old grandson knew what words to say, and his compassion opened my soul. My son’s extra hug was his way of telling me he loved me, and I am still warmed by this gesture.
So when I need to talk about the problems I face with unsympathetic doctors, or tell someone I’m hurting today, or if I need a question answered, I consult with my meddie friends, who are always there for me with a ready answer, because they know what I’m going through. I am awed and thankful for their unflagging support.
I find myself looking beyond my own self-consciousness. I understand that even on my worst days I’m loved, and I don’t need to carry this burden alone. Accepting love from others also allows me to be less rigid and more gentle with myself.
Having medullary as a dance partner comes with an agenda. I never ask, “Why me?” Because in some deep part of my being I know I have extended the invitation.
What, then, am I supposed to learn? What do I need to know? Perhaps it’s that no matter what comes to me from the future, I’ll embrace it without being overwhelmed.
Being mindful isn’t being in a perpetual state of bliss. It’s making hundreds of little choices throughout the day, every day, so I can be present. Little moments are as great as extravagant ones. I’m learning to open my heart and make time to enjoy something. When a friend asks me to go somewhere, the sweeping can wait. The takeaway here is to prioritize what’s essential and what is not.
I can’t conquer cancer. But I can live with it. I can say yes to everything. Yes to anxiety, and yes to love and peace. I can trust that I’m given everything I need for all the life I have.
In the end, I can nudge the cancer and tell it to move over. We’re in this together, for the long haul. The enemy is not cancer.