Part Two: How to Live in Limbo
I’ve been battling cervical cancer for almost two years. Here’s what it’s like.
When we left off, I’d had my first surgery attempting to get rid of the cancer. You can find part one of this series here.
It was the last week of March, one of the few halcyon weather moments North Texans have to look forward to between winter’s freezing wind and summer’s brutal heat. Like the weather, I existed that week in a numb sort of suspension between realities. Weeks before, the world had been filled with the kind of optimism that only comes with youth, good health, and wide open green fields. What would the world after this surgery look like? It was spring, and around me the world was waking up. But I was stuck in a weird limbo, waiting for the go-ahead to move out of winter with the rest of the city, dive into the carefree fun of patio season in Dallas, and pick up my life plan where I’d been forced to leave it three weeks earlier.
When my OBGYN called a few days after my surgery, I heard the gentle regret in his voice in the first syllable he spoke. The surgery had been a failure. I probably should have been more upset, but it flipped a switch in me. The fear and angst simply disappeared as he told me the cancer was moving far more aggressively than it was supposed to, as if there were an acceptable and appropriate speed for my body to turn against me.
After each of my parents died, I entered, as most people do, a period of shock. There were people to inform, eulogies to write, funerals to plan, bereavement leaves to apply for. All of these things required me to be present, standing, and functional. Curling up into a ball in the corner wasn’t an option. There was shit to do.
I had a very similar experience when I heard I still had cancer. My mind immediately went into action-plan mode. I didn’t cry and ask why me? I got icy calm and asked what next?
My doctor told me that I would need a total abdominal hysterectomy with lymphadenectomy, explaining that they would essentially slice my belly from hip to hip, take out all of my reproductive organs, and remove the closest lymph nodes. I stayed silent as he talked about possible targeted radiation, ongoing hormone replacement therapy, and a full recovery time of about four to six months, but I didn’t internalize much of it. I was swimming instead in the memory of my mother’s voice, which drowned out everything.
Mom has started yet another round of chemotherapy. She is obscenely sick and tired. As exhausted as she is, she can’t sleep. As weak as she is, she can’t eat. I bring her lukewarm tea and gingersnaps, rub lotion on her hands and feet, cover her with blankets when she’s cold, and watch with utter helplessness as nothing helps. I beg her to get a second opinion from a research hospital like M.D. Anderson or Sloan Kettering, and she promises she will if this round doesn’t work. But she said that after the last round, too. And she’ll say it again before it’s over.
While we never discuss it out loud, we know that we’re running out of time. Mom is telling me things she wants me to know as she remembers them these days, unexpectedly sharing the kind of wisdom that only seems to come at the end of something beautiful. Always have a separate “get out of Dodge” fund no one knows about. Don’t ever let anyone tell you what your life should look like. And this: If you get cancer, don’t let them rush you into anything. Take a moment to breathe, to explore your options. “It’s your body, Kristy. You have to own that.”
Did she somehow know that I would have to make this decision someday? Looking back, it feels like precognition. Maybe it was her way of telling me she wished she’d done things differently, that she hoped I would know my own mind if I ever had to make that decision. There are moments when I know with such vivid certainty what my parents would say if they were here that it’s as if their voices are rising from within me. As my very kind and talented OBGYN explained his plan to scoop my womb out of my belly, I heard my mother fiercely, forcefully tell me: Kristy — NO.
I thanked my doctor, hung up the phone, and dove into Google. I saw three other gynecological oncologists in the next five days. Within two weeks, I had a treatment plan in place with one of the leading GYN-ONCs in the Southwest — one that included preserving my fertility.
In many ways, it was a cruelly selfish decision. My family hadn’t begun yet to leave the pain of my mother’s struggle behind them. My friends had been supporting me as I cried out for her for the better part of two years. It was too much to explain why I would risk cancer for a fertility I wasn’t even sure I would use. It must have seemed thoughtless, and also typical. I’ve always been obstinate; if there’s something you want me to do, just tell me to do the opposite. I’m a fighter even when there’s nothing to fight about. Was this another example of me making things harder than they needed to be? Was it fair for me to make everyone watch another battle with cancer when I had the option to simply have it cut out, despite what it would take with it as it went?
I couldn’t subject them to that. As the weeks went on, I retreated further and further into myself. No, I don’t need anything. No, I don’t want to talk. No, I don’t need a ride to the hospital. People have their own lives, and no matter how much they love you, if you tell them to leave you alone enough, they’ll turn their attention back to their own worlds. That was how I wanted it. For some reason, I felt that admitting to weakness was failing myself and my mother. I was a badass, goddammit. I needed no one. I also suspect that it was a relief to some that I played my cards close to my chest and didn’t lean on them. Candidly, it made me feel noble to step away and keep my struggles to myself. I was sparing those who loved me. It was horseshit, but it made me feel a little self-sacrificial, worthy of a medal. But mostly, it made me feel strong and capable.
When I made the decision to go against my doctor’s advice and find my own treatment plan, it was a stand I made on my own. I just heard my own voice and my mother’s saying that some things are worth fighting for, even if you have to fight alone. Maybe especially then.
My new oncologist was the perfect balance of caring and competent, brilliant but relatable, human and yet godlike. Perhaps most important, she was a woman.
How many men reading this, I wonder, will understand how critically important that was? Even if I decided I didn’t want children, the ability to carry and bear life was still an intrinsic part of my personal identity as a woman. It isn’t something that traditionalists would describe as feminine. It didn’t make me crave a child or a man. For me, it was the polar opposite.
No matter how aggressive a man is, whether he’s sitting across from me in the conference room or hitting on me at the bar or following me down the street, I contain a power he will never have. I am sacred and worthy of awe. I didn’t realize how crucial the ability to create life was to who I am until men tried to take it from me, which, unfair as it is, was what it felt like. I live every second of my life as more vulnerable than half of the world simply by virtue of being a woman. This is the one power I have that men will never be able to co-opt. Realizing I might lose it was deeply and personally offensive, almost as much as the cancer itself. In some ways, more so. This wasn’t something I could explain to my male friends and relatives. Frankly, I couldn’t even explain it to myself or other women who didn’t feel the way I do. All I could say is that it was part of what makes me me.
Having a woman as my doctor took much of the offense out of the threat of losing that power. I felt understood instead of patronized or dictated to. We were the same in one critical regard: We both recognized that actually bearing children was only a part of what made fertility sacred. I knew she wouldn’t take mine unless absolutely necessary, and so I handed myself over to her completely.
Having done my part in researching and selecting my new oncologist, I surrendered almost all of the decision-making to her team and turned my energy toward the massive, nearly inconceivable task of navigating the brutal logistics that come with a diagnosis like cancer.
I’ve said it a dozen times over the last two years: Having cancer is the least stressful part of having cancer. Coping with the emotional and psychological consequences of coming face-to-face with mortality ain’t easy. But it’s a cakewalk compared with trying to understand and manage insurance companies, medical billing departments, disability providers, human resources, the IRS, collection agencies, well-meaning managers and colleagues, and more unexpected landmines of inconvenience and bureaucracy than I care to name here. It breeds a type of exhaustion that was completely foreign to me. Ironically, I often feel like this is the way parents must go through life: Forced, despite panic and the inescapable sense you’re completely ill-equipped, to steel your spine and do a thing you think you cannot because not doing it is not an option.
My biggest worry, unsurprisingly, was money. There were so few things about the situation that I could control, but finances was one of them. I reached out to every professional contact I could think of who could offer me freelance writing opportunities, frantic over my rapidly rising medical bills. Blog posts for a couple hundred bucks here, video scripts for a few hundred bucks there. I hustled hard, but two months into life after diagnosis, I was quickly losing the race to keep from having to charge my healthcare expenses.
After that first surgery, I took on a big brand-building project for a social media startup that eventually turned into a second full-time job getting the company back on track after a series of bad business managers had made quite the mess. I was good at it — very, very good. As I went under the knife again and again over the following months, the miracles I somehow managed to perform for this company from my sickbed were the only things in my world that made me feel like life wasn’t beating me like a red-headed stepchild, and for the rest of my days, I will be thankful to the founder for the opportunity she gave me. I had no family and no significant other, and without that side work, the long hours after finishing my day job were filled with nothing but worry wormholes and nightmarish fantasies of catastrophic proportions that only grew larger the longer they sat with no one to put a rational spin on them.
For the first time, I understood why my mother worked as long as she did. I used to shake my head as she made the long trek into her office day after day while juggling chemo and surgery and all the other logistical and emotional detritus that came with her illness. She worked until it was no longer safe for her to drive. Even then, she still worked from home as long as she could. I never understood how long the hours become when they’re empty of accomplishment, when the only thing to fill them is a sickness that’s inescapable.
Is there any scarier place to be than trapped in your own head, where the unceasing fright drags you through the looking glass and you lose the ability to distinguish the possible from the probable? I had no perspective when I thought about my illness. So instead I thought about my work, and it saved me. Once again, I was a badass. A rockstar. I needed no one, craved nothing but the next professional miracle and the well-earned dollars that kept me from drowning in debt.
I learned a valuable lesson during that time: If you’re ever in a place of uncertainty and insecurity, find something you excel at and make it your focus. The rest of your life might be going to hell in a hand basket, but in one area, you’re a god. Grasp that confidence tightly, and remember it in the moments you feel like you’re going to shatter. It will be one of the pillars upon which you build the ability to survive.
Don’t misunderstand me. It most definitely wasn’t all strength.
In the long months that followed, I couldn’t think about my health without remembering my mother. I couldn’t seem to separate what I was going through with what I bore witness to during her last year. Her death was still so fresh, so close, and so easily remembered that when I stopped to consider my own situation, it ripped everything wide open again. I learned to experience life differently, process emotion differently. It was almost like it wasn’t happening to me, but to a character in a book. The whole thing was surreal. It isn’t that I wasn’t terrified, but, as I did during my mother’s illness, I observed my terror in a detached way that allowed me to acknowledge it without processing it.
Don’t think about it, don’t think about it, don’t think…
Not thinking is so much harder than it sounds, but it’s critical for surviving an emotional crisis. Crisis is the time to simply put one foot in front of the other, not try to plot a course or ponder what brought you to this point.
But not thinking is tricky because it requires deliberation. You need a well-thought out strategy to maintain a state of non-thought for more than a few hours. These brains of ours are crafty little bastards. Take your eyes off of them for one minute and there they go, down the rabbit hole, throwing anxiety and depression behind them as they dig. Luckily, 21st century America is built on a foundation of enabling mental laziness. Especially if you never leave your apartment.
When I wasn’t working, I finished television. At least I felt like I did. I’ve never been more grateful for my idiot box. I watched every Nicholas Sparks trash novel ever made into a movie. I tuned into every shit-tastic 90s blockbuster, from Armageddon to Titanic to Independence Day. I watched several entire runs of shows ranging from Suits to Shameless to Seinfeld. I developed a dependence on young adult fantasy series like The Hunger Games, Divergent, and Twilight. Trust me, there’s nothing in the world that will make you think and feel nothing like watching Rob and Kristen’s first love scenes.
I also single-handedly kept the food delivery gig economy going. My mother liked to tell the story of how I put myself on my first diet when I was five years old. I decided my tummy was too round and swore off desserts for a week. That means that when I got cancer at 37, I had been dieting for more than three decades. As the months went on, and my isolation became more a permanent condition than a temporary situation, I cared less and less about things I used to be obsessive about. I figured I had enough to deal with without counting calories on top of everything else. So I ordered gourmet donuts for dinner every Friday, indulged in all the fried food I’d denied myself for so long, slathered butter half an inch think on just about everything I ate, and became a fervent advocate of bacon. I lounged on the couch watching television and gorging on a diet that would impress any Southerner. I felt zero shame about it and watched with a detached sort of self-admiration as I gained more than 40 pounds in less than six months.
Pretty impressive, right? I told you I was an overachiever. There was an astounding amount of ignoring immediate realities and instead working on giving myself grace, letting go of most of the lifelong anxieties that whispered in idle moments I was wasting my potential. These things, along with the constant doctor visits and trips to the hospital, became my entire world.
My oncologist ordered another cone and told me to brace myself, for the first was merely a scratch compared to the gouging to come. My older sister came down from Oklahoma to help me out after the surgery, and we spent an awkward couple of days beforehand getting to know one another again after too many years of sporadic Facebook messages and birthday wishes. It was a deeply sweet time of reconnection that I couldn’t fully enjoy because the effort of not showing weakness was exhausting.
Left with nothing to do but play on the internet and watch me with mounting frustration as I stubbornly refused help, Jennifer drove back to Oklahoma City a couple of days after the surgery. I love my sister, but I was grateful when she drove away, taking the only security blanket I had with her. I’d been unable to admit how much it hurt because I couldn’t face needing anyone. And holy fuck, did it hurt. It hurt beyond the point of crying in pain. I basically slept for a week until I stopped feeling like I was going to throw up every time I moved.
Two weeks after my cone, I still hadn’t heard my results. I channeled my mother and tried to stay patient, but I finally threw a small fit in my oncologist’s office during my follow-up explaining in some detail how incredibly cruel it was to make someone wait this long to find out if they still had cancer. My doctor called me that afternoon, launching into an explanation of the procedure, the prognosis, and the go-forward strategy in doctor-speak that I didn’t understand at all. It was a moment of truly creepy deja vu, and the memory of my mother’s small and scared voice asking how much time she had left surrounded and suffocated me.
After about 30 seconds, my newfound badass first-world self interrupted her: “Look, do I still have cancer or not?”
“Hon,” she said — she always called me hon, and it never felt patronizing the way it would have from anyone else — ”we got clear margins all around. We got it. We got it.” She repeated it several times, until it became a mantra that echoed in my own head. One thing I loved about this woman was that she never once made me feel like a drama queen. My case was undoubtedly one of the least serious she was dealing with, but she took my terror as seriously as that of any of her patients.
Though we’d gotten the news that the cancer was gone, the ordeal was far from over. Because it had advanced so rapidly and aggressively, and because I’d elected not to remove my reproductive organs, she wanted to make sure it wouldn’t spread to my lymph nodes. In a bizarre twist of fate, though there were no signs of cancer, my biggest and hardest surgery was still to come. Still, I felt I could take the lymphadenectomy in stride because the terrifying uncertainty of cancer had left me. It was a whole new world of confidence and gratitude, and while the shadow of mortality still hung heavier than it had only three months before, it no longer blackened my sky.
I knew, logically, that this was just early-stage cervical cancer. But it never felt that way. It felt like I was fighting for my life. I think in some way I was reliving my mother’s fight. When I heard I’d won, I felt in that moment a sense of pride that I’d never before experienced, a pride that would have prompted one of those uniquely-mom fist pumps that celebrated my power. I’d done it. I’d walked through the fire alone and emerged triumphant. I’d done it.
But that wasn’t quite right. I hadn’t been alone. We’d done it, my mother and I.
One night a few weeks after Mom died, I had an experience that erased the separation between my mother and myself. I sat rocking and weeping on the edge of my bed, as I did so often in those days. The devastation felt as though it would rend me in two, and I could not catch my breath. I love you so much, I love you so much.
It didn’t come on gradually, but rather in a tidal wave: One moment I was one small and broken person. The next, I felt the space between my mother’s essence and mine disappear completely. The immensity of her love for me flooded into me, filling me with sweetness and air and changing me into someone who loved herself in completeness and absolution. I heard my mother’s voice in my head telling me all the things she loved about me in the superlative way singular to parents. That I was creative beyond belief. That I was the bravest, strongest person she knew. That I was more beautiful than anyone. That she so admired how I held myself with pride. That I am her greatest joy and accomplishment. “Look — look at what I made.”
From that moment to now, I have moved through life loving myself as my mother loves me. It was a gift to me from beyond, and there is no measure for the enormity of my gratitude.
Mom held me close and rocked me in her arms. It’s the picture of a hundred thousand moments: when my father leaves, when I’m bullied at school, when I experience my first heartbreak. “It will be okay, Angel. I’ve got you, Kristy Belle. Hush now. I’m always here. Forever, always.” Saying what mothers say to children when they don’t know what else to say. Saying it so often and with such surety that I never forget the sound and feel of being cradled in this forever love.
While I remain rock solid in my belief that Mom was in me every moment, lending me her strength and grace when I could no longer find those things within myself, I encountered an unexpected and surreal sadness that I’d made it through without her physical presence. I read once that a parent’s final gift to a child is their own death. Until we learn how to let go and walk on alone, we remain, in a sense, children. While our mothers and fathers are here, there is an embrace to run back to when the world gets too hard and too scary and a comforting voice to guide us when we lose our way in the chaos.
Making my way through a battle with cancer without my mother made me stronger than I ever imagined I could be, but it also made me harder. My whole life, I’d been soft, weak, overly emotional. But I’d learned to live alone with so much in the last three years that I no longer had the luxury of weakness. Of course I celebrated its absence, but I also mourned it. My strength meant I was truly, finally a grownup. The child I had been — my mother’s child — was a memory, and while I drew comfort from not needing anyone, I knew a part of me would always wish I could turn back time and crawl into her arms again.
But we can’t go back, and remembering how it felt to be held by Mom hurts. I still can’t let myself go there often. I remember her differently, mourn for her differently, than I did before I got sick. The pain hasn’t gotten smaller, but it’s less keen. The memories are still everywhere, but they live in a quieter part of my brain, a littler corner that leaves enough room to make new memories, feel new joys, and find new loves. During those months of being stuck in a limbo of nightmares, I finally started to understand what the cosmos had whispered to me through a storm a year before. My heart had grown bigger.
And though the months that followed would make me doubt I could keep walking without her holding my hand again and again, I began to learn my mother’s final lesson: How to live without her.