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Life, Interrupted: A Cancer Patient’s Best Friend

28 Sep

By SULEIKA JAOUAD
Photo Credit: Ashley Woo

 

When I was growing up, my dream was to one day become a veterinarian. In fourth and fifth grade, I volunteered every day after school at a veterinarian’s clinic. I didn’t view it as an “internship” — in my mind, I was apprenticing for a certain future in the field. When I was 10, I asked for an incubator for Christmas. By spring, I was carting around a dozen baby chicks in my purple doll stroller. In middle school I walked dogs at the local animal shelter. But as I got older, there was college, summer travel, then my first real job, at a law firm in France. I was entering the “real world,” as they say in commencement speeches. And there was no room in my adult life for a dog.

Then, a year and a half ago, came my cancer diagnosis, and with it the return home. I found myself pleading with my parents for a puppy, just as I’d done as a child. But I knew the medical reality: My weakened immune system, the result of chemotherapy, made getting a dog impossible. My doctors didn’t even think twice about rejecting the prospect, though I still made it a point of asking every few months.

In early September, I was shocked when I received a voice mail message from one of the nurses in the bone marrow transplant clinic. Instead of rescheduling an appointment or changing the dosage of one of my medications, she had dog-related news: My doctors had decided to give me the green light on adopting a furry friend. In fact, they encouraged it. My immune system was stronger — not as strong as it could be, but relatively strong for a patient in the first six months after transplant. And caring for a pet, my doctors told me, might even be therapeutic. As a cancer patient, I’m always being prescribed medicine. But I never thought I’d get a prescription for a puppy.

 

Continue reading, here.

Follow @suleikajaouad on Twitter and on her Facebook Page.

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Life, Interrupted: Putting a Positive Spin on Cancer

25 Sep

 

By SULEIKA JAOUAD

 

Photo Credit: Seamus McKiernan

 

As a cancer patient, I think a lot about how we talk about illness — or more often, how we talk around it. Even the word “cancer” is ugly, scary, burdensome — a roadblock for a conversation before it even starts. Who wants to go there? Much of the time, I’d rather not bring it up if I don’t have to — and I’m the one with the disease!

When the topic is a life-threatening disease, the instinct — for both the patient and non-patient — is often to freeze, and try to come up with a positive spin.

“I’m trying to think positive!” I’ll tell a friend, after listing the symptoms I’m having.

“I’m staying strong!” I’ll write in a text message.

“It’s tough, but I can do this,” I’ll say when I’m having an especially hard day.

No one coached me to say these phrases. So where did they come from? In the middle of chemotherapy, when I’m feeling my worst, why do I feel the need to inject these little nuggets of positivity into conversation?

Our culture is steeped in positive thinking — from the self-help mega-industry to college courses in positive psychology to the enduring pull of the American dream. There is no “dislike” button on Facebook. Nobody wants to be a downer.

But I don’t think it’s all cultural. When it comes to disease, I think the “positivity spin zone” is a force of nature. First, we want to protect the people we love. Cancer makes people think about mortality. It scares your friends and family. And many cancer patients, consciously or otherwise, try to buffer bad news with a dose of positivity. Putting a positive twist on how things are going is a way to convey hope. We want to be strong, to put on a brave face for our loved ones. Positivity is a signal that everything is going to be all right, even if no one knows that for sure.

The second reason, I’ve come to realize, is to protect ourselves. There’s no denying that cancer is a gloomy subject. We repeat positive phrases to ourselves as a sort of mantra. And while positive thinking alone can’t cure cancer, attitude is critical to getting through the process and growing as a person. We voice positivity as a show of strength in the face of the unknown. It’s a daily note to self: I’m going to beat this.

But while I have learned a lot since my diagnosis — and I am trying to be hopeful for the future — living with cancer is also just really, really hard. We don’t always talk about those times. We self-censor many parts of the journey. And when we do speak about it, we often find ourselves framing any negative thoughts in a more positive way.

Continue reading, here.

Follow @suleikajaouad on Twitter and on her Facebook Page.

Join me for a “live chat” on the New York Times today at 4pm EST!

19 Jul

Hi Friends!

Today, I will host an hour-long Facebook conversation on the New York Times about living with cancer in my 20s. The chat will take place beginning at 4 p.m. E.T. on the NYT Well Facebook page.

Join me if you can!

At 4 p.m. EST, go here to join the live chat: http://well.blogs.nytimes.com/2012/07/18/facebook-chat-with-suleika-jaouad/

Thanks and see some of you there!

(if you don’t have a Facebook account, you may have to sign up for one and click “Like” on the NYT Well Facebook page)

Am I a Cancer Survivor?

12 Jul

By SULEIKA JAOUAD

Photo Credit: Seamus McKiernan

 

It was the annual fund-raising event for the Hope Lodge, my temporary home after a bone marrow transplant. The host asked all the survivors to step forward from the crowd. I froze. I didn’t know if that word applied to me. What does it mean to be a survivor? I certainly didn’t feel like one. Not yet, anyway.

The first time anyone used the word “survivor” in reference to me, I had just been admitted to the bone marrow transplant unit of Memorial Sloan-Kettering Cancer Center. A nurse came into my hospital room to review the transplant calendar with me. The transplant had been looming on the horizon ever since my diagnosis with leukemia in May 2011. The nurse briefed me on the sequence of events: intensive chemotherapy, followed by the transplant, and then a four- to six-week hospitalization. I noticed something on the calendar that I hadn’t seen before.

“What’s that?” I asked her, pointing to a meeting scheduled for three months out. The box on the calendar was marked “Survivorship Meeting.” She explained that it was an orientation for patients navigating the world after a transplant. At first, I felt uncomfortable and then a little angry to see that the meeting was planned for three months away. It may as well have been set for 2015. It was hard to imagine ever getting there. As I tried to prepare for a life-threatening transplant to treat my life-threatening disease, I wondered if I would survive to attend the survivorship meeting.

In the cancer world, the term “survivor” is as ubiquitous as it is hard to define. Some cancer patients I’ve talked to feel that it’s too much territory to cover for a single word — every cancer patient has a different diagnosis, a different prognosis.

Continue reading, here.

Follow @suleikajaouad on Twitter and on her Facebook Page.

Feeling Guilty About Cancer

15 Jun

 

By SULEIKA JAOUAD


Image

Photo Credit: Ashley Woo

Guilt, like cancer, is a greedy guest feasting on its host. It is nondiscriminatory. We have all felt it, wondered what it was doing there, willed it to go away.

I’m aware that feeling guilty about having cancer is more than a little irrational. But when it comes to cancer, guilt is a mercurial, equal-opportunity burden that affects both patients and caretakers.

Continue reading, here.

Follow @suleikajaouad on Twitter and on her Facebook Page.

Finding My Cancer Style

7 Jun

 

By SULEIKA JAOUAD

One year ago, almost to the day, I asked my hairdresser to cut off 16 inches of my hair. It was a pre-emptive strike. A few days later I would be admitted to the oncology unit at Mount Sinai Hospital in Manhattan to undergo chemotherapy to treat leukemia. Everyone knows that chemo takes your hair. I wanted to take control of what I could before the poison did its damage. But I left the hair salon in tears, my braids in a plastic bag.

When I was given a cancer diagnosis at the age of 22, sitting in a doctor’s office less than a mile from my childhood home, I remember watching my dad burying his face in his hands. My mom rubbed my back with her open palm. The room fell silent for 30 seconds, or maybe it was three minutes. Then I managed to blurt out two questions: Was I going to make it through this? My doctor told me that my leukemia was “high risk.” I would need to begin treatment immediately. The second thing I asked was whether I was going to lose my hair.

As I tried to prepare for my first round of chemo, I scoured the Internet, read the pamphlets my doctor had given me and paged through the cancer books that friends and relatives had dropped off at the house. I was still catching up on the basic details of my disease, its treatment and its prognosis. I had no idea how to prepare for the havoc it would wreak on my appearance — the part of the cancer experience that the world can see.

Click here to continue reading and to view slideshow 

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The Beat Goes On

25 May

By SULEIKA JAOUAD

Photo Credit: Anne Francey

Music, as the saying commonly goes, can soothe even the savage beast. What about the frail beast? The sad one?

My parents started me on the piano at the age of 4, but it wasn’t until the fourth grade that I chose music for myself. The music teacher at Lake Avenue Elementary School stood in front of the class with a dozen stringed instruments lined up at the front of the room. Choose your instrument, she invited us.

The thought that I could choose my instrument was a revelation. Violins, violas and cellos were the hot items — and there were more of them than any other instruments — but I was curious about the big wooden object at the end of the row, leaning up against the the chalkboard. The double bass. It was taller than I was — taller than the tallest boy in my class — and what’s more, my teacher told me I was one of the only girls in her memory who’d expressed interest in playing it. I had to try it. That afternoon I took it home and gave it a name: Charlie Brown. I was going to be a double bassist.

By age 16, I was a student in the precollege program at the Juilliard School of Music in New York City. Every week I commuted from upstate New York — a four-hour ride on Amtrak — often barely making it on time to my 9 a.m. music theory class. Everywhere I went, my bass came with me. It was cumbersome. It attracted stares — and sometimes unwanted offers of help from strange men. Lugging it around the subways and buses and sidewalks of New York City was a chore — especially for a teenage girl who insisted on wearing heels — but it was worth it. When I showed up somewhere to play, I felt like I had already warmed up.

Last spring, one year out of college, I found myself once again commuting from upstate to the big city. Same train, same route. But this time I was on my way to see an oncologist. I was 22 and I had just been given a diagnosis of acute myeloid leukemia. My relationship with music changed abruptly. I no longer had the stamina or the interest in playing the bass. And once I entered the hospital to begin my intensive chemotherapy treatments, I stopped listening to music altogether.

Between the hospital walls, hearing my favorite songs filled me with a deep, unbearable ache. Music, and the memories attached to them, reminded me of all that was no longer. Where had that feisty, fresh-faced music student with long auburn hair gone?

Continue reading, here.

Follow @suleikajaouad on Twitter and on her Facebook Page.

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