I've been wondering in these last couple days why I've been so slow. Sure, the pandemic, but this was different. Languishing. The dishes forming their own still lifes on the counter, a life lived. Watching the wind blow, the curtains move through our old house. My curiosity was satisfied as a friend reminded me this morning: the body remembers.
I was purposefully transparent leading up to my first mastectomy surgery. Sharing my experience on facebook, via blog posts, stories that detailed how I told my son about the surgery and gene, my last MRI to see what/if I already had cancer, my fear, my sadness, my loss, my fear. What it is like to have these tests. What it means to have to be strong. What to say, what not to say. What it means to carry all of it. The weight. The pain. I was transparent because I wasn't the first, nor will I be the last to do this. I was transparent because gene or no gene, family history or not, cancer can come, and no one should feel alone in this.
Today, December 13, marks three years since my first mastectomy surgery. Three years from the day I had the option, and the strength, to choose to save my own life. Before that day, I had had the suspicion for years. I had lived with cancer and death in my mother for years. The weight. The pain.
Tim O’Brien writes about the things we carry, how the men in Vietnam had to carry their guns, their canteens, their grief, their fear. How they carried it all with them through the jungles, step by step. We all carry something, for we are human, but I no longer have to carry this fear of breast cancer.
What I didn’t know, couldn’t know, was what it would be like. I forget people's birthdays, but I have a mind for details and I remember all of this time: How I’ve never been more scared of anything in my whole life. I remember the lines of lights in the pre-op room. The blue chair where I set my clothes. The purple gown I wore. Snaps on the front. IV in my arm, the taste of saline in my mouth. Waiting. The sliding glass door of the room. Knocking as the people came in. A tv sounding off nearby. The bed is soft and warm, though I never get comfortable. Sheet on plastic. Meeting the doctors and nurses who would be with me. Marker lines on my chest. Lines of measurement, lines of symmetry, lines of where they’d cut. Knowing this. Knowing just years before, my Mom was doing this. My Mom knew this landscape. The last nurse I saw was named Betty, my Mom’s nickname. She offered to sing me a song. Her hands were as soft as her laugh. She held me as I cried. She held me as I got the nerve block and fell asleep. She held me. The body remembers.
It was a six hour surgery. All of my breast tissue was cut out. The precancerous cells were cut out. Expanders placed in, for which my surgeon had to cut into my chest wall because I was so skinny. (I did not, could not know the pain that this would cause.) Grenade-like shaped drains in, little tubes snaking out of my chest. Clipped to a white bandage, edges dyed yellow from iodine. I do not remember waking up. But I did. I woke up. I survived.
Lights on, nurses waking me up to check vitals in the middle of the night, shots in my stomach to prevent blood clots, and the pain. The pain was something new. I thought I had seen pain, but I didn't know anything. Bone pain. Nerve pain. The pain of the incisions. Muscle pain. It felt like electric surges. Razor blades inside my body, scaping my bones. The pain of knowing my Mom had gone through this and I didn’t help enough. I didn’t know how. What I didn’t know, couldn’t know, was how long the pain would last. How I’d get used to the pain. It never relented. It lived in me, with me. It held me. The body remembers.
Six long months would go by. Triumphs of being able to raise my arm over my head. Falls of the exhaustion after. Beauty in observing my boy read books next to me so I wouldn’t be alone. Terror as the pain spiked, sending me to the ER time and time again, as the drugs prescribed didn’t put a pause on the pain and life I was now coming to understand. I took vicodin every four hours for six months. It didn’t touch the fire, the scraping, the electricity. Joy in seeing friends and family make meals in droves. Sadness in missing life. Honor in being able to call life mine, for I could now own a future that I didn’t previously claim. Six months of not being able to leave a room. Six months of laying in the same spot in bed. The same view out the window. Watching the seasons change.
There was beauty in this pain, as there can be. Finding the light in the dark was a great gift. I had so many friends show up emotionally and physically, sitting with me as I could barely hold my eyes open. I had friends disappear entirely, and that, too, was a gift, for I learned who my people were. What does it mean to show up for someone? And what does it mean to show up for myself?
I read voraciously. I journaled. I mapped the start of a project on breast cancer, the details, the work, the cities and organizations. My mind was awake and running as my body sat and healed. I learned vulnerability in myself. I learned how to be vulnerable with other people. Because what is vulnerability if not being seen in that state? I learned boundaries and communication, for the first time in my life, I had to share that what was happening hurt me. I had never claimed that ownership of self before. “What you’re doing hurts me, please stop” as someone would nudge the bed and would send the electricity surging again. I learned forgiveness, and self-compassion, as I was too young to know the pain of my Mother, too young to know what to do, and that was okay. I learned what it means to read a pathology report and see that I was cancer free. I learned that I don’t have to carry that fear anymore. I learned how to breathe. The body remembers.
Nearly six months to the day, I had my third mastectomy surgery. As sad and strange as it seems, it became so normal. Walking into the hospital on my own, rolling out in a wheelchair with my teeth gritting later. The smell of saline. The purple gown. The markings on my chest. Incision with tape marking the five inches on each side. This time would prove to be different, for three days after they removed the expanders, the electricity shifted. The razor blades were gone. And it just got better every day.
I remember walking more after that last surgery in May. Questioning why my feet hurt, and understanding that I had barely worn shoes in six months. My feet had to get used to shoes. Bringing myself to the kitchen, down the stairs to the street. In time, slowly to the end of the street, end of the block, end of the neighborhood. And I kept going. In six months time, with the stubbornness of survival, I would get off all the medication, I would return to work, I would play with my son, I would run a 5k.
I have my scars. Inches across me, lines like a map of this time. I have the great privilege of carrying the memory. (For it means it’s done and it can be a memory) I carry the understanding that I did the hardest and scariest thing I could have done. I carry the knowledge that I went from 85% chance of getting breast cancer to 1% chance. I carry the memory of my Mom, and I carry this knowing Liam will never have to carry what I did. I carry the fire that I had to hold to get through, the fire of my spirit, the fire of survival. I have the beauty of always knowing this survival. I carry the empty space where the fear was. I carry the space. I hold space. And I can hold space for others who know. Because there are so many people that know this.
What does it mean to hold space for each other and our needs? What does it mean to hold space for the hardest things?
To quote Sonya Renee Taylor: “Gwendolyn Brooks says we are each other's magnitude and bond. Assata Shakur says we must love and care for one another. I trust Black women.” In this time of Covid, things are not normal, though some may pretend it is. A collective trauma, a collective grieving whether that is the loss of a person or the loss of the life that you are used to. It is a time to hold each other, hold space, honor the scars and the memory we hold, see each other, and be vulnerable. I was holding space for my own shock and grief, changes and life, and am again ready to pursue what I mapped out so long ago.
I am resuming the breast cancer art project. Collecting stories and artifacts from women who have genes, family history, have cancer, have survived cancer. Because this doesn’t just support them, it supports and holds space for all of us. Building a project where there is a visual articulation of the full breast cancer experience. The waiting. The gown. The questions. The tests. The results. The treatment. What is it like to hold your life and have others hold it with you?
No one should be alone.
1 in 8 women will get breast cancer in their lifetime. It affects not only them, but the circles and lives that they inhabit. We don’t know what to say, we are culturally ingrained to look away when things are hard. To come out on the other end. But sometimes life, like now with Covid, is a moment of liminal space, a moment of suspended self.
I will reach out to the groups, the women, the people who know. 65 stories have already been collected from all over the United States and Canada. Women have sent their MRI scans, their hospital tags, their photos of their scars and of their recovery. People have shared stories of their survival. People have shared stories of their loss. People have shared how they act as a witness to life, to struggle, to death.
It is an honor to do this. It is an honor to know these things. It is an honor to be able to be transparent. It is an honor to carry these memories. It is an honor to carry my life and time. My body will always remember, and that, my dear friends, is a gift.
I look forward to sharing the process of this continuing study and journey with you all.
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