September 23, 2016. I’ve been holding my breath for the past five years.
It feels like fifty.
When the mass in my small intestines (aka the Little Bastard) was diagnosed as stage II non-Hodgkin’s lymphoma in May of 2011, I’d been expecting it. Call it a feeling, intuition or as my ex would say—a glass half-empty outlook—I knew the big kahuna would hit someday. I just wasn’t sure when.
However, what I didn’t expect was just how much it would affect me.
After all, I was thirty-three when diagnosed with lymphoma and it wasn’t my first type of cancer or dysplasia—it was my fourth. In fact, except for a few blissful years in childhood, I can’t remember a time when cancer hasn’t been a part of my life—the weight of it sitting squarely on my shoulders, a little demon forever fluttering its wings against my sanity.
It all began when I was eighteen and the bright pink splotch above my lip wasn’t the annoying teenage pimple I though it to be, but rather basal cell carcinoma. Since then, I’ve had some thirty basal and squamous cell spots removed, the scars creating a jagged story line of surgeries across my body. But if cancer is going to be a part of your life, these minor boys are the ones you want. They’re like the Ford Fiesta of oncology. They hardly ever go fast, they don’t make a big show of themselves, and financially, they’re the cheapest to fix. Although I have to admit that in my twenties, when I was having a minimum of two surgeries per year on my face; it bothered me. Because as a woman with dwarfism, my face was the one thing I thought I had. When your legs are virtually nonexistent—and what is there has as much sex appeal as sausages—your breasts are two sunny sides up, and your hair is the color of marmalade, vain or not, my face was my prized possession. But with each subsequent surgery, the stitches pulled it just a little more out of whack, and I was beginning to look like a case of plastic surgery gone terribly wrong.
Since then, time, gravity, and a healthy dose of nonchalance have worked things out. Besides, all of the tugging and pulling will hopefully have its benefits. Because if there is such a thing as karma, I should be wrinkle free by the time I hit sixty.
The other ones—the less-than-glamorous gynecological dysplasia’s—while not full-blown cancer, are far more stressful. Because unlike the skin cancer, there’s no outside indication to alert me to the fact that my mutating cells are having a heyday. They’re what I call the silent cancers; the ones no one wants to talk about with their insinuations of sex and will never become a marketing phenomenon with their ribbons plastered across every bag of chips, tube of lipstick or package of cream cheese. They’re the ones you suffer alone.
So needless to say, by the time the fourth came along, it wasn’t the bombshell you’d expect. I wouldn’t know, but maybe it’s a little like getting pregnant with your fourth child—a bit of a surprise, but nothing out of the ordinary.
While I’d had the breath punched out of me with the diagnosis of the third, I absorbed the fourth like a bite of bitter cucumber: unpleasant but palatable. I went through the motions: spending twenty-two days in the hospital, throwing up forest-green bile, pulling my hair out in clumps, and numbly walking through a fatigue that left me wondering if I’d already died and someone forgot to tell me.
I seriously could not comprehend how things could get any worse, short of becoming terminal. And even that was beginning to sound like a vacation, of sorts. A month before I was diagnosed, the international relationship I’d been in since my mid-twenties disintegrated, and with little communication from my ex following my diagnosis, my heart was hanging inside me like that last little string of flesh that clings to a baby tooth. The pathology, oncology, and hospital bills were flying into my mailbox faster than I could slam the metal door shut and utter, shit. And the nausea, cotton-mouth, and fatigue were getting worse with each round of chemo, not better like they’d promised. Even the scarves I tied around my shiny, bald, head in the mornings were beginning to piss me off. Losing my hair, eyelashes, and eyebrows wasn’t a big deal. When you’ve dealt with straggly, thin, CHH hair all your life, going bald is a God-given blessing. But trying to tie the scarves into something stylish while undergoing a hot flash had become more than I could handle.
Going into chemo, I hadn’t the slightest clue what I was getting myself into. You might assume that the worst would be the nausea, throwing up, cotton-mouth, mouth sores, chemo brain, fatigue (it ranks right up there), red pee, headaches, loss of taste buds … the list is too long to even list. But that’s marshmallow fluff compared to what comes after treatment. Because while everyone around me was dealing with the mental trauma of the diagnosis, praying, and contemplating a life without me in it, I was just trying to make it from morning to night. I thought about how crap I felt but I never thought about dying. I didn’t think about wills or who would take my hot mess of a cat, Alistair. I didn’t even pray for myself. I just knew I would live, end of story.
This all changed on September 23, 2011, when my oncologist informed me that I was in remission. Those around me were ecstatic and couldn’t understand why I wasn’t doing cartwheels in my sleep. But when you’re no longer fighting for your life, that’s when you have time to think.
Socially, I stopped going out. At thirty-three, every one one of my female friends except two were pregnant, had just had a baby, or were in the process of adopting. I’d just finished my sixth round of RCHOP, which threw me into early menopause. The only things we still had in common were our out-of-whack hormones and hair loss, just for very different reasons. I tried explaining hot flashes to them but it’s hard to describe self-combustion. I didn’t know how to handle their happiness—they had the one thing I wanted, and they didn’t know what to say to me.
I stopped going to church as I couldn’t stem the tears from streaming down my face during children’s story time. Coffee and time alone at home became my Sunday morning ritual.
Wrinkles and battle lines appeared as if out of nowhere. And the fatigue, oh my Lord, the fatigue. I fought it for the first two years of remission until I read an article by a twenty-something survivor who wrote of her exhaustion, “Other people in my age group are like, ‘I went to a party yesterday, it was crazy!’ And I’m just like, “I got out of bed yesterday, it was crazy!”
I wish I could say at this five-year remission mark that I’m grateful for each day and that the whole thing has been a blessing in disguise. Some of this is true. Some of it is not. What I can say with a hundred percent conviction is that nothing is as it was and I wouldn’t have it any other way.
I learned who will show up and who will stealthily disappear when life starts throwing its curve balls and flaming arrows. It’s not always who you think it will be.
While drinking coffee and reading the news online one morning I read an article about First Descents, an organization that takes young adult cancer survivors rock climbing, kayaking, and surfing. Within a month of reading the article, I was hanging off a rock in Estes Park, Colorado, with a group of survivors who went by the nicknames of Pasta, Road Rash, and Rev. A year later, I kayaked in Mount Hood, Oregon, and the following year, I rafted down the Middle Fork of the Salmon with Bird Shit, Bumps, Too Tall, and a group of twenty and thirty-something breast cancer survivors who lit up their fake boobs for entertainment after dark. A former citified bookworm, I realized that actually, nature was my thing. Five years after treatment, I can barely stand to be inside anymore.
Which led me to gardening. Despite the best efforts of my Mennonite mother who canned and froze everything except gum, I spent my adult life actively avoiding dirt. But after treatment, I started to plant things as it gave me a reason to be outside. Tending to seedlings, watching them push their way to the sky, and harvesting my own tomatoes, cucumbers, herbs, and peppers has been one of the most healing things I’ve ever done.
But my greatest takeaways from all of this are twofold: facing my worst fears and learning to love the body I’ve always been a little bit ashamed of and at times, outright hated.
Amongst the myriad characteristics for cartilage-hair hypoplasia is an impaired immune system and the penchant for various carcinomas, including skin cancers, leukemia, and non-Hodgkin’s lymphoma. This means that the little demon forever fluttering its wings against my sanity is just gonna keep on fluttering. With my cancer history and significantly impaired immune system, chemo was my greatest fear, something I tried not to think about—like tarantulas or a global coffee bean shortage; the stuff of nightmares. I assumed chemo would see me riding off into the sunset. However, my body fought like something out of Robocop. And that’s when I started falling a little bit in love with it.
As my friends grow older and begin to lament the reality of their aging bodies, I’m just beginning to celebrate mine. Because for all of the hell it’s put me through, and for all its scars and seeming imperfections society will never let me forget; personally, I stand in awe of its sheer will to live.