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: 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.
Follow @suleikajaouad on Twitter and on her Facebook Page.

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.

Life, Interrupted: Medical Bills, Insurance and Uncertainty

8 Sep

By SULEIKA JAOUAD

Photo Credit: Seamus McKiernan

Like a lot of other young people, I never thought about health insurance until I got sick. I was 22, and my adult life was just beginning. But less than a year after walking across the stage at my college graduation, I received an unexpected diagnosis — acute myeloid leukemia — and with it came a flurry of consultations, tests and appointments. From early on, my doctors told me I would need chemotherapy and a bone marrow transplant.

Before I made that first phone call, I confess I didn’t know exactly what the word “premium” meant. And “co-pay” sounded to me like what happens when friends split the bill at dinner. Certainly, the term “lifetime limit” had no meaning to me yet. The last time I could remember getting sick had been a two-day bout of food poisoning during my junior semester abroad in Egypt. Now, I was facing cancer — and I was beginning to get worried about coverage from an insurance plan I knew virtually nothing about.

Continue reading, here.

Follow @suleikajaouad on Twitter and on her Facebook Page.

100 Day Update (VIDEO)

27 Jul

When I think about a bone marrow biopsy, I often imagine a microscope. I imagine it sitting on the desk of an empty hospital lab. A doctor is looking into the eyepiece and not saying anything. What does he see in there?

I’ve been thinking a lot about the number 100 since my bone marrow transplant in April. The date had been looming since the first days after my transplant, though it also felt like it would never come. In medical terms, the 100 day mark is an examination day. It’s the first major benchmark for evaluating a patient’s recovery from a transplant. The doctors administer a biopsy, an invasive procedure to extract bone marrow from a bone in my hip, to determine whether the disease has returned. The doctors are also looking for any sign that the “foreign” agents in my body — the donor stem cells, which in my case are from my younger brother Adam, are mistakenly attacking my body. This condition is called Graft Versus Host disease (GVHD). While I’ve been lucky to avoid those symptoms so far, though many transplant patients face some form of GVHD, some more severe than others. My worry right now is about what I can’t see — the stuff under the microscope.

In some ways, 100 days is an arbitrary date — even my doctors might concede that. It could be 80 days or 175. Recovery from bone marrow transplants, as I’ve learned from doctors and fellow cancer patients, is rarely predictable. I have a 28-year-old friend who says she “sailed through” the first 100 days after transplant without major issue, only to reveal that her hardest days came in the second 100 days. Maybe that’s the reason, as another friend and transplant patient wrote recently in his blog, that there aren’t a lot of books titled, “How to Recover From a Bone Marrow Transplant.” It’s one of the most advanced medical procedures that doctors do — and it seems as though each patient’s journey is likewise a step into unknown territory.

Maybe more than anything else, the 100 day mark is symbolic. And maybe that’s not a bad thing. My friends threw me a party last Saturday, on Day +101. We had cake — the number 100 frosted across the top — and everyone stumbled through a variation of the “Happy Birthday” song that we had to make up on the spot. It was the first time I’d seen my friends together since before my transplant.

Two days after the party, on Monday, I started a new round of chemotherapy. The doctors want to prevent any cancerous cells from returning. That makes sense, but it’s hard to think about recovery from my transplant when I am trying to prepare for another year of chemo.

The 100 day party may be over but I’m trying to find a moment to take stock of the progress I’ve made since my transplant. And I’m looking over the party pictures again and again.

For more about my 100-day milestone, watch this video.

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.

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