Tag Archives: young adult cancer

Life, Interrupted: My Incanceration

30 Jun

By SULEIKA JAOUAD
Photo Credit: Anne Francey

 

The first time I was hospitalized after my cancer diagnosis — one year ago this month — I was placed in isolation in a drab room where the windows didn’t open. An electronic bracelet was strapped to my wrist, and I was issued a backless hospital gown. A triple-lumen catheter was surgically implanted in my chest to create a central line through which chemotherapy and fluids would be administered. I was all tied up, with both limbs connected to a monitor holding a ring of hanging IV bags.

I dubbed this moment my “incanceration.”

Over the course of the next six weeks, I would have a lot of time to reflect on the hospital experience. Cancer has a way of issuing patients a sudden ticket to the world of otherness. As the chemotherapy took effect, and I Iost my hair, I looked different, I felt different and I even sounded different, as I dragged the beeping monitor with me everywhere I went. For a while I referred to it as “my little friend,” because he never left my side.

I couldn’t help but feel a bit like an inmate shackled to the schedule of the outside world. I remember guiltily feeling envious, and eventually somewhat resentful, of my visitors when they left my room. “I’m taking a break, and I’ll be back soon,” a friend would say. I could understand this, but it also made me angry. I, too, desperately needed a break.

The escape fantasies began soon after. When I lost enough weight that I could slip off my electronic hospital bracelet, Central Park taunted me from my window. I plotted my escape and dreamed about stepping outside and standing in the rain — even if just for a minute. Fresh air is an amusement ride in the imagination of someone who has been in the hospital for an extended stay.

Continue reading, here.

Follow @suleikajaouad on Twitter and on her Facebook Page.

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Life, Interrupted: Fighting Cancer, and Myself

22 Jun

By SULEIKA JAOUAD

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.

Follow @suleikajaouad on Twitter and on her Facebook Page.


The Patient in the Mirror

24 Apr

By SULEIKA JAOUAD

The latest piece in “Life, Interrupted,” my weekly column for the New York Times ‘Well’ section.


Photo Credit: Ashley Woo

“Today, I’m writing from a hospital bed in New York City. I’m in the bone marrow transplant unit, where this week I’ve undergone 20 intensive chemotherapy treatments in anticipation of receiving my brother’s stem cells. In the year since my diagnosis with leukemia, I’ve struggled to hold onto a sense of who I am while I watch the person in the mirror change.

Looking back, I call the first month after my diagnosis “the cancer bubble” because I wasn’t showing obvious signs of my disease. I looked about the same — maybe a little more tired and pale than usual, but a stranger could never have guessed that I carried a secret, deep in my bones.

In the oncology ward, I still felt invisible, flying under the radar with my waist-length hair and the nose ring I got when I was 14. In the waiting room at my second appointment, a man with a sleeveless shirt and a bandanna covering his hairless head leaned in toward my father, who’s been bald since the ’80s, and raised his fist in the air: “Live strong, brother,” he said. Later, my dad and I had a good laugh about the mix-up — it helped ease our tight nerves for a moment. But I remember also feeling slighted, as though my terrible new disease wasn’t being acknowledged.”

Continue reading, here

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Countdown To Day Zero

5 Apr

By SULEIKA JAOUAD 

My latest column for the The New York Times:

Photo Credit: Seamus McKiernan

“Cancer goes hand in hand with waiting — waiting for doctors, test results, appointments, and most importantly, waiting for better days.

Since my leukemia was diagnosed last May, I’ve been waiting for a bone marrow transplant, a risky procedure — and my only hope for a cure. Today my friends are busy starting their lives, but at 23, I am worried that mine might end before it has really begun.

My disease was high-risk and advanced when it was discovered. I was bedridden, suffering from painful mouth sores that made talking and eating very difficult, and I had frequent infections because my immune system was compromised.

Since the diagnosis, my life has been a slow emergency, my world a waiting room. Each month I do a round of chemotherapy, and then the doctors examine my bone marrow to determine if I’m ready for transplant. “Not yet,” they keep telling me, “just a few more rounds.” And so I wait.”

Continue reading, here

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Column Debut

3 Apr

Life, Interrupted: Facing Cancer in Your 20s

By SULEIKA JAOUAD
Suleika Jaouad
Photo Credit: Emma Dodge Hanson

“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.”

Continue reading, here.
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Precious Cargo

9 Feb

By SULEIKA JAOUAD 

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!

 Follow @suleikajaouad on Twitter and on her Facebook Page.

Incanceration

30 Jan

By SULEIKA JAOUAD 

As I mentally prepare for my bone marrow transplant I can’t help but revisit my first hospitalization following my diagnosis in May 2011. Eight months to this day, I entered a New York City hospital for five weeks of induction chemotherapy.

Within 48 hours, I was placed in isolation in a drab room where the windows didn’t open; an electronic bracelet was strapped to my wrist (my tag said my name but I half-expected to be labeled Patient 4256345); I was issued a uniform (are budget cutbacks the reason for backless hospital gowns?); my head was shaved by someone they insisted upon calling a beautician who gave “haircuts” for $25 bucks a pop (I had entered a new etiquette zone: how much do you tip for a cancer haircut?); and a triple lumen catheter was surgically implanted in my chest to create a central line through which chemotherapy and fluids would be administered. I was all tied up, with both limbs connected to a monitor holding IV bags that loomed over my bed like an awning.

This was to be the first of my many incancerations.

Over the next few weeks, I had a lot of time on my hands to reflect on the hospital experience. Before long, as my immune system became depleted, everyone who entered my room was required to wear a mask. (And I had to wear a mask anytime I left the room.) To say nothing of the loss of privacy a hospital patient endures (people burst in at all hours without notice), the face mask requirement added to the feeling of separation that distinguishes the helpers from the helped. Visually, it was a bold signpost for disease, delineating me from the rest, the sick from the healthy. What a strange sight it was to wake up day in and day out to find a cluster of doctors–only their eyes visible above their purple face masks–hovering over me. Eyes and ties. Sometimes, the rules were expanded to require visitors to wear gloves and a hospital gown. I wondered if the next stage would be hazmat suits, like in the last part of E.T. Suleika, phone home.

It dawned on me that along with the other patients on the floor, I was the “Other.” And it wasn’t the fault of the medical staff. Cancer has a way of issuing patients an instant ticket to the world of otherness. You look different, you feel different, you even sound different, as you drag the beeping monitor with you everywhere you go (I jokingly called it my “little friend”).

I couldn’t help but feel a bit like an “inmate” shackled to the schedule of the “outside world.” I remember guiltily feeling envy, and eventually some resentment, towards my visitors as they were leaving the hospital. “I’m taking a break, and I’ll be back soon,” a friend would say. I could understand this, but it also made me angry. I too desperately needed a “break.”

The escape fantasies began when I lost enough weight that I could slip my electronic bracelet off my wrist. Central Park taunted me from my window. I plotted my escape and dreamt about stepping outside the confines of the hospital and standing in the rain — even if just for a minute. Fresh air is an amusement ride in the imagination of someone who has been in the hospital for an extended stay. One day, as I was being wheeled out of the oncology ward for an emergency CT scan, I asked the man pushing my bed what would happen “if” I tried to escape from the hospital. He laughed but then gave me a serious look and said: “You’ll be in big trouble if you do: your bracelet will set off an alarm and the guards will drag you back up here.”

Finally, on a day when I was feeling relatively stable, I attempted to go through with my plan. I hid my electronic bracelet under my pillow and told the nurse I was going for a short walk. I made it as far as the cafeteria on the ground floor. Then, I froze. It was lunch time and people swarmed around me, brushing and bumping me as I tried to stand my ground. My anxiety mounted as I thought of all the germs in the air. I was having trouble breathing. What if I fell? What if I fainted? “I don’t belong here,” I realized. Within a few minutes I had returned to my room. Beep, beep. My little friend chirped. Strangely, I felt safe again.

As a cancer patient, the lexicon of punishment seems to scream out from everywhere I look. Your movement is monitored. Decisions as basic as what and when to eat require pre-approval from a higher order. Not to mention that chemotherapy feels like a semi-lethal punishment in and of itself. The medical staff plays the judge. At any moment, your doctor can issue a sentence: probation, house arrest, time in “jail,” and for some, even death row. I’ve never had to appear in court, but I imagine the adrenaline pumps the way it does before a doctor reads your biopsy results.

Of course, I was incredibly lucky to even have the option of hospitalization, a “right” denied to countless people in this country and around the world. But I couldn’t help but to reflect on the parallels between hospitals and those other (increasingly privatized) confinement palaces.

In retrospect, inventing the term “incanceration” to describe my new diagnosis reflected just how confused, scared and isolated I felt. It’s not that the hospital and my doctors were bad. Far from it. I knew they were the very best and I felt a deep sense of respect and appreciation for them. But on an irrational level, I also felt wronged by those whom I felt had “poisoned” me (medical staff who administered the chemotherapy) and by those who encouraged me (family and friends) to think positively. Finding the silver lining seemed like an impossible feat.

At the peak of my self-pity, I remember asking my favorite nurse, “Why would you ever want to work in an oncology ward?”

Her response really changed my perspective. She told me how she used to work in the spinal cord injury unit, but after a few months, she couldn’t handle the emotional toll it took on her. She transferred to oncology. “You mean there’s a place worse than here?” I asked. She described the patients who come in (often around my age) and wake up in a hospital bed only to discover that they are permanently paralyzed from the neck down.

I felt ashamed that I had forgotten one of life’s truest maxims: there’s always worse. Or to say it in a different way, people who are faced with disease, misfortune or loss in the world constitute an expansive, age-old club.

I remembered how lucky I was that a cure was even an option for me. That day, as I dragged myself out of bed to go for a walk, I forgot how tired I felt and luxuriated in the movement of my legs and the in-and-out of my breathing.

It took a long time for me to begin finding new, more positive ways of understanding what had happened to me. But learning to accept that I was very sick also helped me to realize that I needed help in order to survive this disease. Could I begin to see the hospital not as a prison, but instead as a place of healing that was at times punishing? Could I learn to view my doctors not as judges but as gate keepers to a long and complex healing process? This much I knew: I am lucky to have my family, friends and a dedicated medical team in my corner.

Still, every time I think I have come to peace with my reality, a new bump in my medical journey can quickly undo any fledgling resolve. But instead of listing all the ways in which having cancer has obstructed my freedom, I am challenging myself to think of cancer as my guru and to remind myself of all it has taught me. It’s hard, but I’m trying.

Follow @suleikajaouad on Twitter and on her Facebook Page

 

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