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.

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16 Responses to “Countdown To Day Zero”

  1. heidi kagan April 5, 2012 at 12:53 pm #

    I just wanted to say I was so touched by your article in the New York Times. I admire you for your strength and ability to touch people through your writing. Thank you so much for reaching out to so many people. Not many people in the world can say they make a difference and touch people’s lives-you do and we thank you for that. Thank you.
    Heidi

  2. markcancellieri April 5, 2012 at 1:02 pm #

    Suleika,

    I have been thinking about the phrase “Carpe diem” a lot myself lately, especially since I found out that the phrase was shortened from “Carpe diem quam minimum credula postero.” Roughly translated, “Seize the day, putting as little trust as possible in the future.” I think the fuller phrase is even more powerful. It reminds us of why we should seize the day. We all have a very limited time on this Earth, and it’s important not to delay on doing things that we want to do, whether it is doing things that we enjoy or achieving things that we want to achieve. Steve Jobs was driven because he had a feeling even from an early age that he would die young, so he was anxious to “put a dent in the universe” as soon as possible.

    You may have already heard of Randy Pausch, who died of pancreatic cancer. This is a very inspirational video:

    Randy Pausch Last Lecture: Achieving Your Childhood Dreams

    I wish you the best of luck. Get well soon.

  3. ms April 5, 2012 at 1:05 pm #

    I had a BMT almost 5 years ago in October 2008 — my life is better than ever today. Stay strong and be as active as you can during your hospitalization. For me the waiting and the uncertainty were the worst parts of the treatment. Today, i am so grateful for my rebirth and thankful everyday for my brother donor and the doctors and nurses who gave me a second chance at life. You are lucky to have the same opportunity — post cancer is a wonderful life and it is waiting for you.

  4. Georgia April 5, 2012 at 2:48 pm #

    I commented on the NYTimes piece, but I’m not sure those get sent directly to you, so, I thought I would post here on your blog as well:

    Such a gorgeous piece. As a mom to a cancer patient, I find myself in a similar quandary. MUST enjoy EVERY moment with my child for she could be snatched away at any moment. Tomorrow, her tiny body attached to a ventilator, and today – how I will long for today, right now. Tick Tock indeed.

    Your writing is beautiful Suleika. Glad to have the chance to read.

    • Rozzy Hooper-Hamersley April 6, 2012 at 12:58 am #

      Hi Suleika,

      My sister Katie taught you piano for years in Saratoga Springs. My family and I are keeping company with you and we think you and Adam ROCK. You are a radiant and elegant writer.

      xoxo,
      Rozzy Hooper-Hamersley

  5. J April 6, 2012 at 1:32 pm #

    Dear Suleika,

    Thank you for your beautiful words that resonate so deeply.

    It’s difficult to describe the moment of a life-changing diagnosis. Suddenly there emerges a “before” and an “after.” Like most things in life, the before affects the after. What I did not anticipate was the after’s affect on the telling of the before. My life narrative suddenly changed. I now view my past, present and future selves through a new lens, one that is no longer clear, one that no longer seems to project a continuous, forward view. Yet the lens, although at times dull and misshapen, can also be brilliant in its refractoriness. There is no doubt that this is an up, down, left, and right experience. I once heard a piece of advice quoted in the movie “Under the Tuscan Sun” – to “live spherically, in many directions.”

    I want to express my tremendous gratitude to you because through the sharing of your experiences, in my eyes, you embody this advice. The young adult cancer community is speaking up, and I think our voices are at once both unique and universal. I’m not going to say that I love having cancer or that I would choose it if we were to have a choice in such things. I will say with gusto that I’m awake, aware, and alive in ways that are completely new to me. Yet sometimes, especially when I’m feeling physically or emotionally sick, my relation to the world seems negative and overwhelming. Then a moment emerges with deeper communication with my loved ones, an unexpected act of kindness, the warmth of spring, or a good book, and I suddenly feel grateful.

    The cancer road isn’t easy, and it is often paved with bumps of tattered immunities, unwelcomed bodily changes, interrupted dreams, and isolation and fear. But it is the road less travelled, especially at our age. And on that road, just maybe, the pavement matters less. Because the surroundings and the people we walk with will lift us up. And if they can’t, we’ll find a way to do it ourselves.

    I’m thinking of you as you undergo your transplant. Thank you for having the courage to open the world to your honest and brave voice. Your words are an inspiration to me as I undergo my own cancer journey as a young adult. Please feel free to get in touch any time.

    Thank you,
    J from Massachusetts

  6. MD April 6, 2012 at 10:23 pm #

    Good thoughts for you and your family during this week. Thank you for sharing your story with NYT. Best wishes.

  7. gislaine April 10, 2012 at 12:57 pm #

    Oi Suleika estou arando por vc querida =)
    Brasil

  8. Sergei April 10, 2012 at 2:20 pm #

    Dear Suleika, I wish you all the luck for tomorrow’s procedure. Let it be the first day of your new life and let the cancer be left in the past. It will not be an easy road to recovery but you will get there. I saw your article reprinted in our local Tampa Bay newspaper, and was so happy to know that many people will now read about your journey and get inspiration from your words. Let us all meet in NYC in a year and celebrate life together. Love, Sergei.

  9. Kelly April 11, 2012 at 8:55 am #

    Suleika, Though I’m four years out from my transplant for AML (my brother was my donor as well) and in my 40’s, your writing has certainly rung very true to what the experience was like for me. I imagine you’re in the thick of the storm right now and may not feel up to writing for awhile. Maybe hopeful stories are reassuring. Like I said, it has been exactly four years since my transplant and I am doing well! I’ve pretty much been given the “all clear”. Of course I wish the same for you. Thinking of you and your family. Kelly

  10. Grace April 14, 2012 at 2:50 pm #

    Dear Suleika,

    As I read your latest post on the NY Times, I was just astonished at what a powerful person you are in spite of how weak you must physically feel. I read the brief ‘bio’ of yours on the Huffington Post and the story there- from your travels to the title of your thesis- just made me feel compelled to thank you for sharing yourself and your journey with the media- because you are such an inspirational young woman and such a powerful contrast to the sort of female “icons” or “role models” that the pop industry or reality TV gives us. You’re not only beautiful and intelligent, you are also so fiercely brave. What an amazing example we all- but girls and women especially- have in you.

    Sincerely,
    Grace

  11. K April 20, 2012 at 10:27 am #

    Dear Suleika,

    I was diagnosed with AML at 26, went through several rounds of consolidation chemotherapy, relapsed and eventually had a stem cell transplant in a NYC hospital. I am now 43 years old. I admire your courage writing these reports during your treatment. They are very much to the point of what a young AML patient is experiencing in body, mind and soul. You are a remarkable writer and descriptor of the experience, exactly capturing the feelings of a patient regarding diagnosis, therapy, doctors, visitors, biopsies, blood draws, infertility, transplant, etc, as other past patients here have also stated. You are young and strong and I look forward to reading your reports well into your recovery. Stay strong, be well, with thoughts, prayers and good vibes going your way through the entire process.

  12. Kelly Matula April 20, 2012 at 6:45 pm #

    Hi Suleika,
    Just reiterating that I am thinking of and praying for you and your family in the wake of your transplant. I’ve seen the newer NYT blog posts but thought this might be a better way to get comments to you. Hang in there.
    Kelly

  13. Alexa April 21, 2012 at 6:42 pm #

    Dear Suleika:

    i came upon your blog after reading your NYT column, and i have to say that you are one of the most inspiring people i’ve seen, i am a recently graduated doctor and seeing cancer from the point of view of a patient and even better, from the point of view of such an amazing person has been very interesting and i have to say thank you for sharing your story with the rest of us, thank you for your advice on what to say and not to say to someone who has cancer, i think that everyone should read this blog because it shows how strong a person can be, and yeah, i read that you don’t feel strong all of the time, but to write something that everyone can see and many people can relate to is an incredibly brave thing to do.

    so i wish you the best and that you overcome this as another chapter of your life.

    thank you again for your openness and honesty.

  14. cancerandcandy April 23, 2012 at 8:33 pm #

    Suleika
    Unfortunately I know how you feel. I had BMT transplant as well. But I want you know it was 25 years ago and I am here to tell about it. You are so brave and I love your badass haircut! Give em hell!

    All the best!
    Allison Margolies
    Cancerandcandy.com

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