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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.

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

Follow @suleikajaouad on Twitter and on her Facebook Page.

New York Times Video Portrait

3 Apr

Click below to watch:

 

 

 

 

 

Follow @suleikajaouad on Twitter and on her Facebook Page.

Writing For Hope

29 Mar

By SULEIKA JAOUAD 

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!

XOXO,

Suleika

 

Follow @suleikajaouad on Twitter and on her Facebook Page.

Update: Bone Marrow Transplant Next Month

6 Mar

By SULEIKA JAOUAD 

For almost a year now, I have been waiting to undergo a bone marrow transplant. It’s been right around the corner for nine months. Every month I do a round of chemotherapy, and each time I am told to wait. At my last appointment, my doctors caught me off guard by setting a tentative date for transplant: April 2. I feel extremely lucky to have a donor and to have access to some of the best medical care in the world, but my sense of waiting — a terrible anticipation — has become more acute as the date approaches.

The results of my latest bone marrow biopsy still show evidence of the disease. Although there have been some positive developments since I began treatment late last spring (the number of cancerous blasts in my bone marrow has decreased from 30 to 3 percent), I worry that I will not be in total remission by the start date of my transplant. I am hoping that my current round of chemotherapy (Vorinostat and Vidaza — the Vicious V’s, as I call them — the drug combination that constitutes the clinical trial I have been doing since August) will get rid of these remaining blasts as well as multiple chromosomal abnormalities and deletions in my bone marrow. It’s those abnormalities that the transplant aims to eradicate with fresh donor cells.

Instead of focusing on the curative possibilities of the transplant, I find myself thinking about all that might go wrong. This is my only chance for a cure, but my transplant doctor’s words won’t stop ringing in my ears: “for someone with your medical profile, the transplant has a 40-50 percent chance of success.” Actually, “percentages” are not that predictive, given all the factors involved: my form of myelodysplastic syndrome (MDS), my reaction to the donor cells, complications that can occur during a transplant, and on and on. But I’m finding it difficult to feel optimistic about a live-saving procedure when the odds seem stacked against me — or at the very least, even.

My world of waiting is split between willful distraction and a morbid kind of myopia. I fluctuate between two extremes: wanting to pack in as many adventures and diversions into the next four weeks, and losing myself in thoughts and fears about the future.

How do you “suck the marrow out of life” when you’re counting down the days to a bone marrow transplant?

It’s difficult to imagine that in only one month, I’ll be on all the necessary medications for my transplant — the intensive chemotherapy and radiation, the antibiotics and anti-nausea pills, the immunosuppressants, and the rest. I’m confident in my doctors’ abilities, but I don’t have any prescriptions for the waiting. Just the journals I’m filling up, stacked next to my bed, and my greyhound dog calendar, a gift from a friend. Soon I’ll flip it over to April.

You can find more information on the bone marrow transplant process here.

Follow @suleikajaouad on Twitter and on her Facebook Page.

Conquering the Win-Lose Mentality

24 Jan

By SULEIKA JAOUAD

There is a dreadful routine to chemotherapy. It is a predictable poison. After my first few rounds of treatment, the newness faded away to reveal an awful realness. Contrary to what I hoped, chemotherapy was not an extracurricular activity. It was a full-time job.

My life has become synced to a chemotherapy calendar. Each month means a new treatment (a 28-day cycle, which I can do from home, with doctor’s visits throughout). Instead of September, my calendar read: Round Two. (I’m currently in the middle of my sixth round).

I have become an expert at predicting when side effects and symptoms will set in. It’s a ghoulish monthly party — and the guests arrive on time: nausea, vomiting, chills, exhaustion, fever, mouth sores, pain, infections, and emergency hospitalizations.

The Clockwork of Chemotherapy

Despite the “clockwork” of this cycle (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 course of the past eight months, not once have I “won” this secret battle with myself.

The same goes for my current round of chemotherapy. The first day of this treatment started off badly. I went to the movies with some friends. I realized the instant we pulled up to the theater that I had forgotten my anti-nausea medicine. But it was a Friday night and I hadn’t been out with friends for weeks so I decided to go anyway. Before the movie had even begun, I had already raced twice to the bathroom to vomit. I threw-up five more times, barely making it to the trash can — not to mention the end credits. My friends offered, and even insisted, to take me home, but I refused. Reeling from nausea and exhaustion, I sat through all 124 minutes of We Bought a Zoo as if my life depended on Matt Damon and his sappy-but-kind-of-charming narrative about a farm of animals.

Why? I needed to feel like I could “tough it out.” I wanted to “beat” the symptoms; to take them to war.

Toughing It Out: The Battle Language of Cancer

Where does this mentality come from?

The cancer world is awash in battle language. Like mantras, our culture repeats these war-like phrases over and over. A few weeks after my diagnosis I even saw a poster that said: Fuck Cancer. Pithy! Cancer books love to traffic in this take-no-prisoners language. They talk about cancer “warriors” engaged in a battle for health and they encourage patients to visualize chemotherapy as a sea of soldiers entering the blood stream 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.

My reaction to challenges has always been to fight hard for what I want. I have always prided myself as a “doer.” In this way I’m probably like a lot of my peers: I like to compete. I like to push myself. I like to win. When I started treatment, it seemed like a no-brainer: I was going to take on cancer like I’d taken on everything else before this.

But as much as I “battle,” I haven’t outwitted chemotherapy and its punitive, punctual side effects. As I write this, I am deep-in-the-bone tired, nauseated, and I haven’t left my bed in two full days. It is difficult not to equate sickness or weakness with a feeling of failure. A year and a half ago I was deciding between two job offers, while this morning I gave up on making a sandwich when I couldn’t open the jam.

Shedding the ‘Win-Lose’ Mentality

Today, as I finish the last day of this most recent round of treatment, I can officially say that I’ve “lost” once again — but I haven’t lost in the spiritual or medical sense. Instead, I’ve lost in the Manichean world of “win-lose” thinking. And I’m glad I did. I am realizing that “beating” cancer isn’t about winning or losing. I wish it were, but it just isn’t.

I’ve decided to take my new “fight” to the win-lose mentality itself. The battle I’ve been waging in the past months has been centered on fear and anger about not being able to do what I once could. In short: feeling entirely unproductive. And for someone who defines herself by doing, this can seem like a pretty bad fate.

Today, instead of pursuing the impossible defeat of mostly unavoidable side effects and symptoms, I’ve decided that my challenge will be to develop a new brand of acceptance: a strong acceptance, a muscular acceptance, but still: acceptance.

Acceptance is not supposed to be part of the lexicon of successful people. Or so we are often told. But I’ve learned that you can’t fight your way out of every problem. The solution to some challenges is not to charge full speed ahead. If this approach feels counter-intuitive, (which it often does), I try to remind myself that chemotherapy, too, is illogical on its face: you are poisoned in order to be cured.

I realize now that the experience of having cancer is more of a tricky balancing act between being proactive about your medical condition, while simultaneously accepting and surrendering yourself to the fact that — for the time being — you can’t change your reality as quickly as you’d like to. Acceptance is not giving up — far from it. But like a prisoner in handcuffs, the best way out may be patience. Trying to wriggle your way out only wastes precious energy. And it can make you go mad.

Stories of cancer warriors like Lance Armstrong make me feel both inspired and inadequate. Clad in the iconic yellow jersey, Armstong triumphed over his cancer as he raced to victory not once, but seven times, in the Tour de France. But it’s important to remember: everyone’s battle is different. Plus, not everyone looks good in yellow.

I want to thank my boyfriend, Séamus, for helping me brainstorm and type this blog post when I wasn’t well enough to do it by myself. I couldn’t do any of this — or fight any of these battles — if it weren’t for him.

Follow @suleikajaouad on Twitter and on her Facebook Page.

An Update on Today’s Biopsy

12 Jan

By SULEIKA JAOUAD 

First of all, I want to thank everyone–my friends, family, and supporters–for keeping me in their thoughts and prayers today. I am so touched and inspired by the overwhelmingly positive response I’ve received about my blog.

Here’s the scoop on today’s biopsy results: my disease is not getting more aggressive. My doctors would like to do one to two more rounds of treatment.  I start treatment again this Saturday. This means I will be getting my bone marrow transplant in March or April.

In the past few days, many of you have offered to get tested to be a donor. Saying ‘thank you’ feels like an understatement. In fact, I am tremendously lucky that my 21-year-old brother, Adam, is a perfect 10-out-of-10 match on the donor scale.

As a friend wrote to me the other day: “Modern science is miraculous, and so very often are kid brothers.”

I would, however, encourage everyone who hasn’t already signed up for the bone marrow registry to do so. The process is so simple: all they do is swab the inside of your mouth with a q-tip and you’re out the door. Not to mention, it’s not everyday that you get to position yourself to save a life.

You can even get creative with it. My boyfriend’s coworker organized a bone marrow drive in their office. It was easy to put together, and they signed up lots of new donors.

A special note, the national bone marrow registry has a shortage of donors from minority ethnic groups. As a Swiss-Tunisian, doctors said I was lucky my brother was a match. The chances of finding a close genetic match may have otherwise been slim.

Sign up for the registry here.

*If you live in upstate NY, you have the potential to save a life this week! Emily Ziegler, a junior in high school from Queensbury, was recently diagnosed with leukemia. Help her on Jan. 12 by coming to the bone marrow drive for her.

My brother and me, moments after finding out he was a 10-out-of-10 match.

 

Follow @suleikajaouad on Twitter and on her Facebook Page.

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