Archive | March, 2012

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.

Hair Tattoos As Pre-Transplant Prep

25 Mar

By SULEIKA JAOUAD 

In a little more than a week, I’ll be entering the hospital to begin the bone marrow transplant process.

This past Thursday, I headed to Astor Place Barber Shop to meet with Miguel A. Lora — barber and hair tattoo artist extraordinaire. My new buzzed ‘do is one of the many different things on my to-do list before this procedure (haircut: check; new pajamas: check; dry cleaning of “Sleepy” — my childhood stuffed animal: check).

Although I’ll be bald as an egg within just a few weeks, experimenting with my hair — purple mohawk, hair tats, and all — has been liberating and self-empowering. Hair loss may be something that’s out of my  control, but while I still have some of it, I call the shots.

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Follow @suleikajaouad on Twitter and on her Facebook Page.

Cancer Chic: My Post-Chemotherapy Mohawk

12 Mar

By SULEIKA JAOUAD 

Photo Credit: Ashley Woo

 

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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.

Off To The Races

4 Mar

By SULEIKA JAOUAD 

This picture was taken last July. After one long, grueling month in the hospital, I couldn’t have been happier to return to Saratoga Springs, home of the annual horse racing banaza that draws gamblers, tourists and big-hat-wearers for 5 weeks every year. The restaurants raise their prices and the main drag, Broadway, is teeming with revelers. Downtown is crowded with a rowdy contingent of Harley motorcycle-types, who park their metal horses in long dominos along the main street, and the gambling crowd, many of whom eschew the track for divy bars where they can watch the races on tv. It’s a noticeable contrast from the other 11 months of the year, when this sleepy rural area is more Birkenstock than Big Hat.

Photo Credit: Kevin McKiernan

 

Follow @suleikajaouad on Twitter and on her Facebook Page

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