Photo Credit: Shayla Harris/The New York Times
There is a dreadful routine to chemotherapy. My life has been synched to a chemotherapy calendar ever since my leukemia diagnosis last year. I have become an expert at predicting when side effects and symptoms will set in. It’s a ghoulish monthly party, and the guests always arrive on time: nausea, vomiting, chills, exhaustion, fever, mouth sores, pain, infections and emergency hospitalizations.
Despite the clockwork of these cycles (start chemo, wait for symptoms, get sick, go to the hospital), at the start of every new round I convince myself that the outcome will be different. This time, I am going to be stronger than my treatment. This time, my mind will outwit my body. This time.
But over the past year, after 28 rounds of treatment, not once have I “won” this secret battle with myself.
The cancer world is awash in battle language. Our culture repeats these warlike phrases over and over, like mantras. Cancer books love to traffic in this take-no-prisoners language. They talk about cancer “warriors,” fighting and winning a battle for health. They even encourage patients to visualize chemotherapy as a sea of soldiers entering the bloodstream to fight off the enemy disease. In a lot of ways, it’s an attractive line of thinking. It’s the hero’s journey mixed with the glorification of war. It’s the us-versus-them theme — except in this case it’s us-versus-us. Cancer is one’s own civil war.
Continue reading, here.
“I was so excited for what lay ahead, I nearly forgot to wave goodbye to my parents. Armed with a college diploma, my first job offer, a one-way ticket to Paris and a new pair of heels, I was ready to take on anything. Little did I know, I would be back in New York seven short months later. But my parents would not be taking pictures at the airport or chatting about my future plans. I would be in a wheelchair, too weak to walk.”
Ten months ago, when I entered the hospital for my first round of chemotherapy, I began writing what would later be the first piece on this blog, “Good Afternoon, You Have Cancer.” In the first few days of my hospitalization, in June of last year, before the side effects had kicked in, I felt scared but ready to fight. I was bursting with creativity, ideas, and ambition about how I might learn and grow from this disease.
“We are all imprisoned in our own way,” I wrote in my diary, “but right now, in this very moment, there is, all around me, the open space to become, to create, to arrange words in an order that no human being has ever arranged them before — that is magical, that to me, is meaningful.”
But when the chemo started, my writing stopped. I spent most of the summer in the hospital. Long days without feeling the fresh air of outdoors.
The fall was supposed to be better. Outpatient chemo, my doctors proposed. It was nice being home, but the treatment wasn’t much easier. After each monthly round, without fail I ended up with an infection. Back to the hospital.
The New Year came — I celebrated NYE with my boyfriend Seamus at a beautiful B&B in Vermont. We counted down to 2012 around a bonfire, a serene moment in a year of chaos. All of a sudden the urge to write came on like a wave crashing to shore. I’ve been writing ever since, sometimes just a few minutes a day — other days it’s all I do.
As I count down the last few days before I enter the hospital this Monday for my bone marrow transplant (I’ll be hospitalized for 45 days or so), I’ve struggled with how to spend my time meaningfully, mindfully. But when I’m writing, I feel at ease. If only for a few minutes at a time. I can engage with the weighty stuff of my illness while getting lost in the creative distraction of the writing process. It’s not an antidote to the pain, but it’s a tool that’s made me feel sturdier — even, braver — during these hard times.
What started as a personal blog in January caught the attention of the New York Times. Today I’m excited to announce the launch of “Life, Interrupted,” a weekly column I’ll be writing for the ‘Well’ section.
Click here, to read my first piece “Facing Cancer in Your 20s.”
As always — thank you for your readership, love and support. Stay tuned for more updates!
By SULEIKA JAOUAD & SEAMUS MCKIERNAN
If it takes a village to raise a child, you might say it also takes one to care for the sick. Cancer is at once personal and communal. Disease lives in the sufferer’s body but the experience of illness is shared, often intimately, by our loved ones. And yet, caring for the sick can feel like writing a travelogue about a country you’ve never visited. You can’t know where you haven’t been.
“What can I do to help?”
This is the sincere, often reflexive, response people have when they find out I have cancer. When I was diagnosed with leukemia last May at the age of 22, my boyfriend, Seamus, sprung into action as my CCO: chief care-giving officer, after my parents. As the news of my diagnosis spread, my friends, acquaintances — and even some strangers — formed a loving support network. It was a comforting reminder of how selfless people can be.
But while most of my friends and family would help me in a heartbeat, knowing how to help can be a daunting, even paralyzing, challenge. Over the past eight months, through seven hospitalizations and six rounds of chemotherapy, Seamus and I have sustained a running dialogue about what it means to be a caregiver and a care recipient; what it means to be in love with one another while my body’s at war with itself.
This guide to helping a friend with cancer is built from parts of our many conversations on the subject of care giving.
Seamus McKiernan is an associate blog editor at The Huffington Post.
OK, Cancer is a gloomy subject — there’s no pretending it’s not. But often, our instinct is to over-emphasize the proverbial “silver lining.” Positive thinking at its best is an expression of hope in hard times. And while positivity itself is not a bad thing — it’s certainly more enjoyable than fixating on the negative — it can be problematic if it distorts the reality of what someone’s going through.
Americans like to think of themselves as “positive” people. Our culture is steeped in positive thinking — from self-help books to Harvard courses to the ubiquitous mention of the American Dream. After all, there is no dislike button on Facebook. But for a cancer patient, being bombarded with wild optimism for its own sake can sometimes achieve the opposite of its intended effect.
When I was first diagnosed, my close friends and family tried to put on a brave face, but instead of making me feel better, it sometimes made me feel more alone: was I the only person who felt scared, confused, and angry? I had cancer — why did everyone insist upon avoiding the topic?
Barbara Ehrenreich explores the negative effects of positive thinking in her recent book Bright-Sided. “We need to brace ourselves for a struggle against terrifying obstacles,” she writes, “both of our own making and imposed by the natural world. And the first step is to recover from the mass delusion that is positive thinking.” Ehrenreich isn’t against lightness or laughter, but instead, she urges us to consider how positivity and denial can go hand in hand.
While our instinct can be to immediately steer conversations with cancer patients towards the cheerful, it’s critical for someone who is sick to feel comfortable venting feelings of fear, sadness, anger, loss, and isolation. Being honest about how a life-threatening illness can make you feel — both as a caregiver and the one being cared for — helps get rid of the elephant in the room by acknowledging its presence. One of the most important things you can do for a friend with cancer is to be an equal opportunity listener. Make it clear that you are willing to listen to both the good and the bad.
I’m driving to my destination — I have to get there on time — but something is wrong under the hood. The engine’s clacking. At any moment, I’m worried it’ll sputter out, run out of gas, blow a gasket. I’m driving along, wearily, like a trucker on ice.
This is the metaphor that came to mind last week when I was racing to finish an important project as my body started to falter.
Here’s what happened.
February 1st began on a high note: My dream of writing for a major newspaper publication came true (more details to follow soon)! The editor gave me a deadline of Monday morning. For the first time since my diagnosis last May, I had a project. A responsibility. For the first time in more than 8 months, maybe cancer wouldn’t be my sole job.
Just one day later, I woke up with a feeling I know only too well: deep-in-the-bone exhaustion and achy limbs accompanied by mouth sores so painful that talking or taking a sip of water makes me want to cry. The worry starts to set in. But usually no ones says anything yet.
By 10 p.m. that night I was having uncontrollable chills. My mother piled blankets onto me but nothing could stop my teeth from chattering. I was cold from the inside, not outside. She checked my temperature: 99 degrees Fahrenheit. Twenty minutes later it was up to 100 degrees. When it climbed up to 102.5 I knew the dreaded H-bomb was about to drop. “Hospital, now,” my mom said.
Getting read for an emergency hospitalization is similar to going on a very chaotic, last-minute family vacation. My parents scramble to make sure they have a place to stay, we throw our clothing and toiletries into our carry-on luggage and then pile into the minivan for a four hour drive to New York City. By the time we arrived, it was almost 3 a.m. The ground floor of the hospital was completely deserted with the exception of a few patrolling security guards. And I was furious.
I hated my body for failing me now. Hadn’t it put me through enough? The timing seemed beyond unfair. I had two days to write my piece and, up in my hospital room, I could barely keep my eyes open from all the pain medication I was on. I went to bed feeling angry — angry at the white walls of my room, angry at the hospital food, and angry at the nurse who couldn’t find a good vein in my arm for the IV and kept poking me with needles.
My boyfriend woke me up the next morning and said: “You are going to get this piece done, no matter what we have to do.” I didn’t believe him. But he wasn’t kidding around and within half an hour we had begun the slow, tedious process of brainstorming and drafting an outline. I wasn’t the most pleasant collaborator — more times than I can count, I got tired, frustrated, broke into tears, and then had to take a long nap to recover from my outburst. But somehow, we did it. Needless to say I couldn’t have done it without him, but I got the piece done.
Comparing our bodies to vessels — like cars — that carry us through our lives, seems apt up to a point but it only goes so far. In the car metaphor, you can leave your broken vehicle by the road, hitchhike, or buy a new one. But in reality, we only have one “car.” While some people believe the mind can overcome the body, for the majority of us, especially for those of us who are ill, when the body is in crisis, the mind is too. Physical illness infects the mind: when your body ails, your mind, your thoughts, your plans, your identity is changed.
So, what can you do when your mind wants to do one thing and your body is saying another?
These three golden rules are what got me through the weekend: respect your body’s limitations (when you feel too tired to keep going, take a nap), compromise (one hour of work, one hour of rest), and when you need to, ask for help (thank you, Séamus).
*Footnote: I have no idea what as gasket actually is, though I know of it. I can’t drive — I don’t even have a permit– but I still have my poetic license!