Part One: The Best Laid Plans
I’ve been battling cervical cancer for almost two years. Here’s what it’s like.
I got the call when I was in the pressroom at South-by-Southwest. I’d just made my third trip to the bottomless coffee bar and was finally in the zone to write up the morning’s interviews when my phone buzzed. It was my gynecologist’s office. Just like that, I fell out of the zone.
I’d been getting a lot of calls from my OBGYN over the last couple of weeks. During my annual well-woman exam, I’d had an abnormal pap result: HPV. To be frank, it was neither a surprise nor a concern. About 79 million Americans are currently infected with a human papillomavirus. Everyone I know has had HPV. My cat probably has HPV. Usually, it just goes away on its own, but this time the test had revealed a couple of wonky strains — 16 and 18, to be precise — that are responsible for about 70 percent of all cases of cervical cancer.
Still, my doctor assured me, there was no reason to worry yet. The odds were definitely in my favor. More than 90 percent of men and 80 percent of women are diagnosed with some form of HPV during their lives, and around one-half of these cases are with a high-risk (cancer-causing) strain. The vast majority of the time, cancer is not the outcome.
I went in for a colposcopy, which is just a fancy name for a cervical biopsy, and then trotted down to Austin for South-by. It was my first time to attend the conference, much less attend as press, and I was ready to enjoy it. So I put my pesky woman troubles in a little box and stored it on an out-of-the-way shelf in my head.
That’s where it stayed until my phone rang in the pressroom three days into the conference. I expected to hear a nurse on the other end of the line. When I heard my doctor’s voice instead, my skin went cold and everything in me felt like it dropped a foot.
I took the phone into the hall, slid down a wall to sit on the floor with my head between my legs, and took a deep breath. “Okay, doc. Lay it on me.”
Ten minutes later I packed up my things and left the convention center to book an earlier ride back to Dallas. For me, playtime at South-by was over. I had a battle to prepare for.
My mother was diagnosed with breast cancer in 2011. After a mastectomy, a lymphadenectomy, chemotherapy, and radiation, she was declared cancer-free, and we all tentatively began to let our shoulders relax. Three years, they’d said: if she remained cancer-free for three years, her chances of coming out of remission would drop drastically. When the three-year mark came, we didn’t have the audacity to rejoice. We just allowed ourselves to begin to imagine a world where the future wouldn’t always be clouded with the possibility of cancer. She was 56 years old and beginning to dream of what she would make of the golden years that were opening up in front of her.
She began, tentatively, to plan.
In 2014, my mother’s cancer returned, and it wasn’t in her breast. It was in her bones. It was in her brain. It was in her liver. Despite a tooth-and-nail fight, cancer killed my mother a little over a year after her re-diagnosis.
My mom was my world. Walking with her through those last months changed me in a way that’s impossible to describe, even to myself, other than to say the day she died, all the color bled out of life. I lost my father nearly a decade ago, and weathering that loss jolted me into a long-overdue maturation process. I’d braced for something similar when Mom died, but there was no way to prepare for the way her loss shattered me, or the battles I’d have to fight in order to find my way back to a semblance of peace.
There are big, tragic things that happen in life that we never really get over. But there are small moments, too, where in a flash you experience a pain that makes you understand the human experience a little more. The only way I could get through that last year with my mom was to shut certain parts of me down. She needed me strong. She needed to not worry about me. Whatever happened, she needed to know that I would be okay. I couldn’t face the reality of what was happening and be that daughter for her at the same time. I was fierce in fending off my own terror and heartbreak, and part of what allowed me to do that was being able to accept the fact that my mother was dying without actually facing the concept.
I think Mom felt an obligation to act strong for me, too. She never stopped being my mama, never stopped wanting to take care of me, never stopped telling me how proud she was of me. In the beginning, she never showed me the psychological and emotional tolls the fight was taking on her. But as the months went by, and seemingly endless rounds of chemotherapy and surgery proved powerless over her cancer, the cracks began to show. And today, it’s the memory of those small moments that break my heart the most.
I am in the room when my mom’s oncologist tells her it’s likely she won’t beat this disease, but they’ll do everything they can to make sure she has as long as possible. Her voice is small and panicked as she asks the doctor to give her hope to hold onto.“What does that mean? Five years? Ten? Twenty?” My mother is terrified and in denial. Don’t think about it, don’t think about it, don’t think.
I’m lying with Mom in her bed watching television. It’s become our ritual when she’s too sick to move around much. It’s only a few weeks before she’ll lose the fight, and we know we won’t get years together, after all. A family comes on TV, and my gentle mother erupts at the unfairness of having to leave her own family. “I’ll be all alone,” she cries. I wrap my arms around her and rock her as though she is the child. I feel a part of me crack off and spin away forever.
Mom is lying on the couch two days after the oncologist gave her a couple of more weeks to live. My mother has reached a place of acceptance. She is so tired, so desperate for rest. My upper body is thrown over hers as though I could keep death at bay, and I am sobbing, finally. Her hand is so light on my head as she strokes my hair that I can barely feel it. “It’s okay, angel. It’s okay.” My aunt is sitting on the arm of the sofa crying silently. “Jenny,” my mom whispers, “look — look at what I made”. And I know even in my madness that I will never forget this moment.
I am in a back room at the funeral parlor. It’s just me and my mother, beautiful, so beautiful. And so cold. I climb on the table next to her and take her in my arms. “Mama, Mama, Mama.” My screams are uncontainable; they fill the building, waft into the chapel where another mother or father or son or wife is being laid to rest. It is nearly an hour before I can make myself kiss her goodbye for the last time. I stroke her hair and tell her I’ll be okay, and to wait for me on the other side of the Great Mystery, then walk away, leaving the person I was lying in my mother’s arms.
These are the moments that came to mind during the long months of my own battle, and that I immediately, violently shoved aside every time. If I started crying, I didn’t think I could stop.
Acknowledged or not, these are the moments that stay with me.
After my mother’s death, it took more than a year for me to find any sort of firm footing in life again. I pushed hard against my boundaries during that time, determined to find solace in solitude and a sense of connection through exploring the world.
There was no rhyme or reason to my travels. I went where my fancy and my bank account led me. Quiet stays in Victorian B&Bs in the Ozarks. Road trips through the flat landscapes and reservations of Oklahoma. Days spent wandering through the narrow, impossible streets of Old World Spain and Morocco. Weekends with friends in Santa Monica. Work trips to San Francisco, For Lauderdale, Phoenix, Chicago. One weekend meandering alone up the coast of California, from the slick hipster vibe of Santa Clara to the wild waves of the Lost Coast, stopping for a hike in the Redwoods that Mom had always wanted to take but never got the chance to.
I boarded a plane for Mexico on the one-year anniversary of my mom’s death. Somehow I’d made it through the “year of firsts”: the first Christmas without her, the first Mother’s Day, the first of her birthdays that would pass without her presence. I kept thinking it would stop hurting so much, but it never did. As the shock slowly wore off and the fog that had taken up residence in my mind slowly cleared, the grief grew worse and worse until I felt it had completely absorbed me, and I was no longer my own person.
So when a close friend casually mentioned getting a group together to rent a house in Puerto Escondido, Oaxaca, for six weeks, I was the first to agree. I desperately needed a break from it all: In Dallas, amidst the memories and well-meaning concerns of people who loved me, my life was one of constant, unrelenting grief. I hoped the sleepy little surfing town held the peace I craved. Somewhere in the intense heat and the vastness of the ocean, I hoped I would find my true north again, and the pain would get smaller.
For the first few weeks in Mexico, I existed in limbo, not happy but not heartbroken, lulled by my days into a weird, emotionless place.
It was close to midnight about a month after my arrival, and the rain outside had slowly grown from a drizzle to a downpour. It was quiet in the house. Some were working, some reading, some — like me — had lost themselves in the rhythm of the rain. I was halfway through a bottle of red wine when the rain began to lash sideways at the house, overflowing the beds of cacti and our little pool. I don’t remember shoving the wine bottle into my day pack and heading into the dark. I don’t remember at what point I gave up on keeping my flip flops on and walked barefoot the rest of the way to Playa Carizalillo, trudging through mud and brambles and trash tossed to the side of the path by thoughtless beachcombers. I have flashes of carefully picking my way down the hundreds steps to the beach, wondering with a detached, abstract sort of concern if I would slip on the slick stone and tumble down like a broken gymnast.
The beach was empty, the vendors peddling mediocre quesadillas and coconuts with straws stuck in them having long ago retreated from the storm. I crawled under an abandoned palapa, pulled out my wine to take a swig straight out of the bottle, and settled back to watch the storm howl over the Atlantic. Behind me, the flood of rain had turned the long stairway into a waterfall. In front of me, the angry surf crashed into the shore and swept the sand in between my toes. And all around, the rain attacked in ceaseless torrents like tears too long suppressed that had finally been released in one uncontrollable night. I huddled under my tiny roof of palm fronds in complete blackness, the intermittent crack of lightning on the horizon giving me occasional, surreal flashes of my own body that made me aware of my existence without pulling me back into myself.
I should have been scared by the rawness of it all, but instead I felt at home, as if I belonged nowhere else. I was alone in a completely foreign place watching a physical manifestation of how I had felt since my mother’s death a year before: floating untethered in a storm not of my own making, forceful and awesome in my grief, reduced to experiencing only the most elemental emotions.
That night, somewhere between screaming at God and crying out for my mother, I let the wind rip through me. It annihilated the wine and swept away the flimsy mask I’d assumed. I rocked back and forth, asking the cosmos when it would get better, when the grief would recede just enough for me to be able to breathe again. And the cosmos answered: The pain will never get smaller. Your heart has to get bigger. I sat on the beach for hours until the force within me blew itself out in concert with the storm over the sea. When it was over, I walked back to the house and fell into a sleep without dreams.
That was the first of a dozen moments of connection I’d have in the weeks after. In a strange, new place, I somehow found my mother everywhere: in the bioluminescent waters of Manialtepec Lagoon that made my skin sparkle like starlight. In the steamy darkness of a temazcal sweat lodge high on the peak of a distant mountain, where a shaman blessed me in a mist-filled dawn. In the sunrise over the sea that cast every color of the prism into the sky like a gift. In the giant mural I passed every day to and from the cafe where I worked — a vibrant pink hummingbird that took me back to days of rocking on the front porch of my parents’ house in the country and watching my mom break into a smile whenever we spotted those fluttering wings hovering around one of her feeders.
I hadn’t found peace by the ocean. Instead, I found a kind of acceptance I’d never known: An acknowledgment that both life’s cruelty and its kindness was sudden and arbitrary, and that I would never again live under the delusion that I was in control. It was a lesson that I’d be grateful for again and again after my diagnosis. It allowed me to move through those months knowing there was nothing I could have done, nothing I could do. Life is ruthless in its disregard of us as individuals, and I was able to feel the terror that comes with cancer without taking it personally.
I still wonder if that was a lesson my mother ever learned.
After a year and a half of running, I reached a level of calm. I finally felt as though I knew where I wanted to be and how to get there. I made a six-month plan and let myself begin to get excited about life again.
They say life is what happens when you’re busy making other plans, but it seems more cruelly deliberate than that. Every time I’ve had the arrogance to make a serious effort toward writing my own script, life slams home to me how little I actually control. So it truly didn’t surprise me when I found myself plunged into the icy cold reality of having cancer one week into my new life plan. It isn’t like I’m some pessimist who gets a headache and assumes it’s a brain tumor; it just seemed almost natural that disaster would strike right when I thought I was in the clear. It’s like when you hear a couple that got married because of unexpected pregnancy is divorcing. You might not have been expecting the news, but it certainly isn’t a surprise.
I want to take a moment to clearly say that at no point was I ever in direct fear that my cervical cancer would kill me. I’d caught it early, and it was in a part of my body that I could live a perfectly healthy life without. But I have long had an unexplored and unsubstantiated conviction that you never really get rid of cancer. This isn’t something that’s backed up by any kind of science or statistic. It’s just it seemed like I’d known very few people to get cancer, get rid of it, and never encounter it again.
At first, the circle of people I told about my cancer was tiny. My loved ones had spent the last two years aching for me and my family as cancer took my mother and destroyed our lives. The last thing I wanted to do was stir up all the emotional dust that had just begun to settle. I curled into myself, making a cocoon of my apartment and my solitude. Like embracing an old friend, I fell backward into the easy familiarity of surviving terror, returning to the modus operandi that had seen me through my mother’s last months: one breath at a time.
Considering that both of my parents and three of my four grandparents had cancer, I’ve suspected for a while that it was in my future, too. Nearly nine out of 10 cancers are diagnosed in people over the age of 50, so I figured that at some point in my 50s I’d get the call, and the fight would last me the rest of my life.
I never would have imagined I’d get that call at 37. And while I never thought this cervical cancer would kill me, all I could think was not yet… not yet…
The life I’d envisioned for myself disappeared, and it was back to shutting down parts of my emotional capabilities, walling off sections of my brain, shoving memories into lockboxes and storing them behind vault doors.
Watching the person I love most in the world die slowly taught me a lot about how to survive terror. You survive it by not feeling it. You survive it by not letting it be quite real. You survive and you survive and you survive. Until you don’t.
For my first surgery, I told everyone except my stepfather and my closest couple of friends that I had a respiratory infection. That’s the excuse I gave work when I called in, my grandmother when I canceled our Saturday lunch, and my friends when I declined plans. I figured if the surgery worked, no one would ever have to know. What’s the point in stirring everything up when it’s all probably going to be over in a few days, anyway?
My OBGYN and the resident gynecological oncologist for Presbyterian Hospital performed my surgery, called a cold knife cone biopsy or a conization. This was a step up from the small biopsy that determined I had cancer to begin with. A big step.
Maybe it’s because I had them remove my IUD during the procedure and my reproductive system went haywire, but whatever the reason, I felt the pain of this surgery in my eyeballs, my ears, behind my knees. Sure, there was that same sharp pain as when something hits your cervix wrong during sex or a gyno appointment. There was the ovarian cramping I’d experienced every month since my first menstrual cycle at 13. There was that weird, ambiguous sore muscle feeling that seems to accompany general anesthesia. None of that pain surprised me.
But this surgery brought a deeper ache in a part of my body I’d never been aware of before. The very center of my body throbbed. I felt heavy. I felt utterly violated.
I am not a woman who has ever been sentimental about the idea of having children. For most of my life, I didn’t want kids. Even as a child, I always had a very specific idea of what I wanted my life to look like, and it did not include a single thing related to raising a tiny human. And frankly, I always knew I lacked the maturity to be a mother, and I had no desire to become that kind of woman. It held no interest for me.
Things changed, though, when Mom died. I found a rock solid core within me, as if that grief gave me the clarity of vision to see who I was for the first time. I was no longer afraid of life, of how hard it could be. My worst nightmare had come to pass, and yet I remained. I learned the seemingly impossible lesson of being alone without being lonely, and that almost all of the fears I’d let govern my life were things I made up in my own head. It was the first time I felt equipped to be a parent.
The more that the wrenching grief over my mother faded into the bittersweet loss of a great love, the more it seemed an inevitability that I would want to try to recreate that love if I could. I figured I’d give the cosmos until I was 40. If the future father of my children hadn’t been gifted to me by then, I’d just pick him from an anonymous list and raise a child by myself. The more I thought about that idea, the more it appealed to me.
That night after my surgery, when my few close loved ones had come and gone, I lay alone in the soft purple night and felt my womb weep bitterly at its violation and quake before the looming threat of this cancer. I felt a strange echo of the pain of losing a parent. I could feel a child who had never existed slipping out of my grasp, and the terror of it all tore through me like a storm over the sea in a Mexican midnight. Alone in the dark, I cried out for my parents. I cried out for mercy from a God I no longer believed in. I cried past the point of crying, where weeping becomes wailing. I held my cupped hands between my legs like a shield, curled my knees to my chest, threw my head back and poured my rage and fear and pain out in sounds that were less sobs and more war cries.
What more would life take from me for daring to plan?