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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.

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.

Keeping Cancer At Bay

1 Jun

 

By SULEIKA JAOUAD

Photo Credit: Greg Edwards

“How are you doing?” is a complicated question for a cancer patient.

Watching for the return of cancer after a bone marrow transplant is a full-time job, even when results from the first biopsy seem hopeful. Last weekend, my doctors gave me a “pass” to leave the Hope Lodge, my temporary home in Manhattan, for a few days. It was good to have a break to travel upstate to my parents’ house. Unfortunately, I got sick to my stomach during the four-hour trip and spent most of Friday and Saturday sleeping in my childhood bedroom.

But I couldn’t help thinking of Memorial Sloan-Kettering Cancer Center, the New York City hospital where days earlier my doctor had delivered the results of my first bone marrow biopsy since my transplant. If you had asked me how I was doing last Thursday morning — crossing Manhattan in a cab on a muggy, drizzly morning on my way to receive the test results — I would have described the sense of dread welling up inside of me. The biopsy would be the first glimpse at my new bone marrow, the foundation of my new immune system, which had been “rebuilt” with my brother Adam’s healthy stem cells during my bone marrow transplant last month. Would the cancer still be there?

Continue reading, here.

Follow @suleikajaouad on Twitter and on her Facebook Page.

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.

Cancer Chic: My Post-Chemotherapy Mohawk

12 Mar

By SULEIKA JAOUAD 

Photo Credit: Ashley Woo

 

Follow @suleikajaouad on Twitter and on her Facebook Page.

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