Life, Interrupted: Brotherly Love

21 Mar

 

By SULEIKA JAOUAD

Suleika Jaouad with her brother Adam.Photo Credit: Seamus McKiernan

There are a lot of things about having cancer in your 20s that feel absurd. One of those instances was when I found myself calling my brother Adam on Skype while he was studying abroad in Argentina to tell him that I had just been diagnosed with leukemia and that — no pressure — he was my only hope for a cure.

Today, my brother and I share almost identical DNA, the result of a successful bone marrow transplant I had last April using his healthy stem cells. But Adam and I couldn’t be more different. Like a lot of siblings, we got along swimmingly at one moment and were in each other’s hair the next. My younger brother by two years, he said I was a bossy older sister. I, of course, thought I knew best for my little brother and wanted him to see the world how I did. My brother is quieter, more reflective. I’m a chronic social butterfly who is probably a bit too impulsive and self-serious. I dreamed of dancing in the New York City Ballet, and he imagined himself playing in the N.B.A. While the sounds of the rapper Mos Def blared from Adam’s room growing up, I practiced for concerto competitions. Friends joked that one of us had to be adopted. We even look different, some people say. But really, we’re just siblings like any others.

When I was diagnosed with cancer at age 22, I learned just how much cancer affects families when it affects individuals. My doctors informed me that I had a high-risk form of leukemia and that a bone marrow transplant was my only shot at a cure. ‘Did I have any siblings?’ the doctors asked immediately. That would be my best chance to find a bone marrow match. Suddenly, everyone in our family was leaning on the little brother. He was in his last semester of college, and while his friends were applying to jobs and partying the final weeks of the school year away, he was soon shuttling from upstate New York to New York City for appointments with the transplant doctors.

I’d heard of organ transplants before, but what was a bone marrow transplant? The extent of my knowledge about bone marrow came from French cuisine: the fancy dish occasionally served with a side of toasted baguette.

Jokes aside, I learned that cancer patients become quick studies in the human body and how cancer treatment works. The thought of going through a bone marrow transplant, which in my case called for a life-threatening dose of chemotherapy followed by a total replacement of my body’s bone marrow, was scary enough. But then I learned that finding a donor can be the scariest part of all.

It turns out that not all transplants are created equal. Without a match, the path to a cure becomes much less certain, in many cases even impossible. This is particularly true for minorities and people from mixed ethnic backgrounds, groups that are severely underrepresented in bone marrow registries. As a first generation American, the child of a Swiss mother and Tunisian father, I suddenly found myself in a scary place. My doctors worried that a global, harried search for a bone marrow match would delay critical treatment for my fast-moving leukemia.

That meant that my younger brother was my best hope — but my doctors were careful to measure hope with reality. Siblings are the best chance for a match, but a match only happens about 25 percent of the time.

To our relief, results showed that my brother was a perfect match: a 10-out-of-10 on the donor scale. It was only then that it struck me how lucky I had been. Doctors never said it this way, but without a match, my chances of living through the next year were low. I have met many people since who, after dozens of efforts to encourage potential bone marrow donors to sign up, still have not found a match. Adding your name to the bone marrow registry is quick, easy and painless — you can sign up at marrow.org — and it just takes a swab of a Q-tip to get your DNA. For cancer patients around the world, it could mean a cure.

The bone marrow transplant procedure itself can be dangerous, but it is swift, which makes it feel strangely anti-climactic. On “Day Zero,” my brother’s stem cells dripped into my veins from a hanging I.V. bag, and it was all over in minutes. Doctors tell me that the hardest part of the transplant is recovering from it. I’ve found that to be true, and I’ve also recognized that the same is true for Adam. As I slowly grow stronger, my little brother has assumed a caretaker role in my life. I carry his blood cells — the ones keeping me alive — and he is carrying the responsibility, and often fear and anxiety, of the loving onlooker. He tells me I’m still a bossy older sister. But our relationship is now changed forever. I have to look to him for support and guidance more than I ever have. He’ll always be my little brother, but he’s growing up fast.

 

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Life, Interrupted: My Mother’s Cooking

21 Mar

 

By SULEIKA JAOUAD

 

Suleika Jaouad, right, and her mother, Anne Francey.Suleika Jaouad, right, and her mother, Anne Francey, left.
Photo Credit: Seamus McKiernan

For many of us, the holiday season triggers memories of food and family. That’s certainly the case for me. I can always tell when my mother, an artist who grew up in Switzerland, starts to feel nostalgic for home. It is the smell of the crispy apple tarts, the ginger cookies, and the creamy muesli full of nuts and fresh berries. The scent alone delivers a rush of childhood memories for me.

Food has always been an important part of my family. But since I was diagnosed with leukemia two years ago, food has taken on an especially central — and complicated — role in my life. My incredible doctors have been in charge of deciding which chemotherapy treatments and medications I will take. Their role has always been clear. But for my mother, who has always been in action to take care of me but often feels powerless against my mysterious disease, the prescription she draws upon is often a remedy from the kitchen.

My mother comes from a small village on the Lac de Neuchâtel where there is one bakery, one butcher and one grocery store. Even after decades in New York, she prefers home cooking to ordering in. So when I fell ill at the age of 22 and had to move back home with my parents, my mother tailored and amended the vaunted Swiss recipes from her childhood to make them as nutritious and immune system-boosting as possible. It wasn’t infrequent that a red lentil soup or zucchini stuffed with risotto was the highlight of a day otherwise spent in bed staring at my childhood bookshelves and pondering my future.

But my relationship with food has been complicated since my cancer diagnosis. Chemotherapy can wipe out the biggest appetite. It can render delectable food not only inedible, but downright unviewable, unsmellable, unthinkable. After my first hospitalization, a six-week stay in isolation, I quickly learned to be careful about which foods I chose to eat when I was in the depths of sickness. Some of my all-time favorites, like my mother’s rice pudding (extra cinnamon, with cardamon and grated almonds, plus my mom’s T.L.C.), no longer represented comfort food but triggered memories of nausea, the beeping of the I.V. machine and the fluorescent lights of the hospital room. Like other dishes, it has become a food casualty of chemo.

Having cancer changed the way I ate and thought about food. My symptoms dictated my eating habits. The sores in my mouth and the bouts of nausea, for instance, stole the pleasure of eating and made it an ordeal. At some points in my treatment, eating wasn’t even an option. During my bone marrow transplant last April, my only food came in the form of yellow-green liquid hanging from an I.V. pouch. It was the first time I considered how the physicality of eating — the cutting with a knife or slurping with a spoon or chewing of tender meat — was a big part of what I enjoyed about food. In the transplant unit, I remember wanting, more than anything, to bite into a stick of celery. I dreamt about the “crunch.”

Continue reading, here.

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Life, Interrupted: Real Housewives of Chemotherapy

21 Mar

 

By SULEIKA JAOUAD

 

Kristen Howard, left, and Suleika Jaouad found friendship and laughter in their cancer diagnoses.Photo Credit: Jenna Pace

I am never happy to be in the oncology waiting room. But when I first saw Kristen Howard sitting across from me at Mount Sinai Hospital, I could barely contain my excitement. Since my diagnosis with leukemia two years ago at age 22, I’ve learned that it is a rare sight to see young people in the hallways of an adult oncology unit. Kristen’s bald head confirmed that she, too, was a cancer patient. I beamed at her from beneath my face mask, with a strange sense of relief to see another young woman who looked like me. I knew we had to meet.

Over the course of the next few weeks, Kristen and I became “cancer friends” — a new subgenre of friendship we often joke about. Kristen, now 31, of East Lansing, Mich., was diagnosed with non-Hodgkin’s lympoma a year ago. We convinced the hospital staff to allow us to share a room in the chemotherapy suite for our infusions. Suddenly, the hospital became a place not only of fear and loneliness, but of companionship and solidarity.

We joked about everything from our hair loss to our chemotherapy-induced infertility and hot flashes, to our insurance woes. One day in the chemotherapy suite, Kristen and I laughed so hard that a nurse came into our room to tell us to keep it down.

“Ladies, this is not supposed to be fun,” the nurse said, scolding us loud enough for the others to hear but barely concealing a smile.

Of course, we knew there was nothing fun or funny about sitting in a chemo suite — but developing a friendship during our shared crisis became a life-changing outlet. Cancer patients can attest that, whether we are always aware of it or not, we can’t share the same things in the same ways with people who have never had cancer.

For me and Kristen, laughter now plays a more defining role in our friendship than cancer does. One day, discussing our shared love for the Bravo television series “Real Housewives,” we came up with an idea for a spinoff. We liked the idea so much that we even made a video about it called “The Real Housewives of Chemotherapy.” We could not stop laughing while we made it, and we now hope to use the video as a way to connect with other young cancer patients.

It has been almost a year since Kristen and I first met. She’s now in remission. I had a successful bone marrow transplant in April although I continue to do monthly chemotherapy treatments to prevent recurrence. Our hair is slowly growing back. And we’re beginning to find our “new normal.” But the future for both of us still remains obscured by doubt and fear of relapse. Today I’ll travel to the hospital for my six month post-transplant bone marrow biopsy, the invasive procedure that tells the doctor whether my cancer is still gone.

During difficult times, we continue to look to laughter and our friendship as a way of coping with the hardships that cancer has thrown our way.

Please watch our video here:

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Life, Interrupted: Hurricanes And Cancer

21 Mar

Photo Credit: Seamus McKiernan

As Hurricane Sandy prepared to make landfall on Monday, my boyfriend, Seamus, was making a checklist: Do we have candles, flashlights? Could a tree fall through our window? Have we stocked up on enough water and food? Are our loved ones safe?

I was in the other room, with a knot in my stomach. But it didn’t have anything to do with the impending storm. My monthly round of chemotherapy was scheduled to begin that day. Just the thought of an approaching chemotherapy treatment was sending my body into a spin.

For cancer patients like me, and for others who suffer from chronic or life-threatening illnesses, natural disasters don’t put health on the back burner. In fact, disasters like this one only add another layer of concern. Hurricane Sandy coincided with my ongoing cancer emergency, which I’ve been navigating since my diagnosis with leukemia almost two years ago. You can’t ever fully prepare for Mother Nature. But while you can gather a first-aid kit, canned goods and extra batteries, you can’t stockpile chemotherapy drugs, antibiotics or emergency medical advice in the same way. For people in need of medical assistance, natural disasters can be a double-dip crisis: a public safety emergency on top of the unique challenges of one’s own disease.

My home, like those of countless East Coast residents this week, was in an evacuation zone. Electricity, cellphone service, hot water and transportation were no longer available. For me, as a cancer patient, it also means that it is challenging to get ahold of a doctor, find my way to a hospital or get emergency medicine if I need it. Sewage mixed with the storm water flowing in the streets, and I was worried about the risk of infection.

Part of the difficulty of these twin crises — a natural disaster and an ongoing medical emergency — is that while I wanted to stay a safe distance from the danger zones, I also had to be within a safe proximity to the hospital. On Monday and Tuesday, the streets were empty and the subways closed. With the hospital four miles from my apartment, and differing reports about when the hurricane would land, I decided to play it safe and delay the start of my chemotherapy.

Many New Yorkers with health conditions were in a similar predicament. Some were cancer patients whom I know. I received a Twitter message from Annie, a 31-year-old woman with breast cancer: “No radiation for me until further notice. NYU Langone Cancer Center has no power, and they’ve told me not to come in until they contact me.”

Annie still hasn’t been able to get in touch with any of her doctors, and has received no information about rescheduling her radiation treatments. Meanwhile, like every other New Yorker, she’s dealing with the transit shutdowns and power failures in Sandy’s wake.

“I’m anxiously awaiting to hear news from both Con Ed and my oncologists,” she told me.

She tried calling other hospitals to see if they could administer her treatments, but so far she’s had no success.

“I understand this is an emergency and that there are other people who more urgently need to see doctors,” said Annie. “But I can’t help but feel anxious that I don’t know when I’ll be able to receive treatment.”

Continue reading, here.

Follow Suleika on Twitter and connect with her on Facebook.

Life, Interrupted: Changed by Cancer

4 Nov

By SULEIKA JAOUAD

Photo Credit: Theo Wargo/WireImage

I was speaking at the Angel Ball, the yearly red-carpet event for the Gabrielle’s Angel Foundation, which in this past week alone raised nearly $4 million for blood cancer research. I had never spoken in front of so many people before. It was one of the proudest moments in a tough journey over the past two years. And I was able to meet world-class doctors and researchers, other cancer survivors and even some celebrities.

On the drive over, though, my nerves were shot. All I could think about was whether I had spent enough time memorizing my speech, and whether I’d chosen the right dress. Lurking in the back of my mind was a laundry list of “to do’s” and checklists thrown like scraps on a mounting pile of anxiety.

But there was something different about this stress. It took me a minute to put my finger on it, but there it was: For the first time since my diagnosis I was stressed about something that didn’t have to do with cancer.

I bristle when the word “gift” is used in the same sentence as “cancer.” There is no upside to having a life-threatening illness. It can ruin lives, friendships, families and dreams, and trying to focus too much on finding a silver lining can trivialize real suffering. I would never have voluntarily chosen to go down this path. But like any other struggle, cancer has changed me. I wish I could learn about overcoming struggle by training for a marathon or applying for a new job, like many of my peers are doing in their early 20s. But life is unpredictable, and we don’t always get to choose our battles.

Cancer robs you of your ability to look at the big picture — or at least obscures it. The news that I had cancer ripped away the expectations I had of myself to be a certain type of person with a certain type of life. I used to think that looking at the “big picture” meant figuring out 1-year, 5-year and 10-year plans. Back in 2010, I had just graduated from Princeton with highest honors, and I felt pressure to get on the fast track to success — whatever that meant. Like a lot of my peers, I was in the thick of the culture of anxiety surrounding achievement. I signed a two-year contract at a fancy corporate job even though I knew I much preferred Birkenstocks to high heels, creative writing to spreadsheets. This path wasn’t right for me, but even though I felt miserable I continued going to work each morning because I was focused on the idea that having a practical, long-term plan was part of seeing the big picture.

I like to think that I eventually would have found my way to a career that both inspired me and paid the bills. But before I was able to figure out what that was, the cancer showed up. My life was interrupted. My doctors told me I would need intensive chemotherapy and a bone marrow transplant. From the looks on their faces, I could see that there wasn’t going to be any quick fix for my disease.

I had spent a lifetime focusing on the big picture, but cancer forced me to look at the small picture. I had no choice. I quickly learned that trying to predict the results of a bone marrow biopsy or a round of chemotherapy was a torturous and futile exercise. So, for the first time in my life, I began to focus on the present.

Continue reading, here.

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Life, Interrupted: A Battle With Myself

4 Nov

By SULEIKA JAOUAD


Photo Credit: Ashley Woo

I used to resent the battle metaphors associated with cancer. “Keep fighting,” people would say. “You’re going to win this war,” a friend would write in an e-mail.

I could appreciate the intent behind the word, but I just couldn’t identify. Most of the time, I didn’t feel like battling at all. I was just doing what I needed to do to have a shot at surviving. Many people told me I was brave. But I didn’t feel brave. I was simply following the orders of my doctors.

A battle, to me, suggested some kind of active combat, with weapons and soldiers by my side. But most of my cancer journey has been spent lying in a hospital bed in isolation, feeling alone and defenseless, hoping for the best. Some people like to visualize chemotherapy as a surge of soldiers entering the bloodstream to wage war on the cancer cells. But this never worked for me either.

Cancer is mostly an internal affliction. My cancer lived in my bone marrow and was completely invisible to me. It was difficult to fight an enemy that I couldn’t see, feel or touch. After finding out I had cancer, I didn’t feel like a fighter. I was scared and realized I knew almost nothing about a disease that had a big head start on me.

Continue reading, here.

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SLIDESHOW: A Puppy Love Story

4 Oct

This is the story of me and Oscar. The day-to-day reality of being a cancer patient is tough. But in September I received some happy news: my doctors announced that I was allowed to adopt a puppy (my weakened immune system had made this an impossibility before). So my boyfriend Seamus and I did our research, eagerly discussing our much-awaited pup. We quickly found him: Oscar 9-week-old miniature schnauzer and toy poodle mix with big brown eyes, floppy puppy ears and soft white fur. The only problem was that I hadn’t yet told my mom, who is hyper-vigilant about my health status post-transplant, about him. It turns out it’s hard to hide a yapping puppy from your parents, and even harder not to fall in love with him. Oscar re-introduced me to the world. When you’ve lost most of your hair from chemo treatments, you tend to stick out in public. But Oscar changed that. People started approaching me on the street not to ask about my health, but to play with Oscar. So here’s to Oscar: a cancer patient’s best friend.

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.

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Life, Interrupted: Six Ways to Cope With Cancer

26 Sep

By SULEIKA JAOUAD
Photo Credit: Ashley Woo

 

People are always giving advice to cancer patients. Whether it is nutritional advice or doctor recommendations or tips on how to quell the nausea that accompanies chemotherapy, just as soon as people hear you are sick they usually want to find a way to help. Most of the advice is welcome and encouraging, though in some cases you’re just not in the mood to hear what someone has learned because you’re too busy treading water.

 

That’s one reason I hesitate to lend any advice at all. I’m only 24. I’ve had cancer for 16 months now. It feels like forever to me, but it’s a short period of time compared with people I know who are going on 5 or 7 or 10 years living with cancer. But I’ve received some heartfelt advice and solidarity along the way from fellow cancer patients, doctors, friends – even from strangers – and it has meant a lot to me. It’s been 16 months since my diagnosis and four months since my bone marrow transplant, and now I want to share what I’ve learned along the way.

 

Continue reading, here.
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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.

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