Good Afternoon, You Have Cancer

7 Jan

By SULEIKA JAOUAD

One rainy spring morning in Paris, I woke up with flu-like symptoms and decided to take a “me” day from work. Little did I know, I would never return.  Three months later, exactly one year after graduating from college, I found myself in the oncology ward of a New York City hospital, undergoing my first of many courses of chemotherapy.

Back in France, my doctor had attributed my symptoms to burnout syndrome, an umbrella diagnosis that might well apply to any sleep-deprived college grad in her first year out in the “real world.” He sent me home to the US with orders to rest.  But when I continued to feel unwell, I did what all doctors tell you not to do: I typed my symptoms into Google.  There were hundreds of matching hits but the word cancer jumped off the screen.  I can remember the momentary chill I felt in seeing that word, but I promptly dismissed it: life-threatening illnesses, after all, only happen to other people.

My Internet search proved ominous at my next doctor’s visit:  “Acute Myeloid Leukemia,” my doctor said, his voice quavering as I began to cry. Most people, while peripherally aware of their mortality, are unprepared to receive such news. In the time it took the doctor to utter those three words, my life suddenly felt like a house of cards, ready to collapse on my dreams for the future. I was 22 years old.  My friends were busy starting their lives, and I was worried that mine might end before it had really begun.

Everyone told me how difficult chemotherapy would be.  The doctors and nurses prepared me for what to expect, gave me pamphlets explaining the disease and its treatment, and guided me to websites and support groups. I learned to accept that when it comes to the medical treatment, my role is limited: I must trust the wisdom and instruction of my doctors and hope for the best.

Today, as I prepare for a bone marrow transplant, I’ve learned my biggest challenge is not just physical. It is enduring the boredom, despair, and isolation of being sick and confined to a bed for an indeterminate length of time. There have been remarkable advances in cancer treatment over the past few decades, but there is no magic pill to cure the emotional distress of illness. I have discovered it is up to me to help myself.

Through much trial and error, I am creating a roadmap for emotional health and spiritual wellbeing. The way I spend these long hours in bed holds remarkable power over the way I feel, both physically and psychologically. In the hope of helping the many others who share the struggle of a long and uncertain convalescence, I’ve decided to share my experience–the good and the bad, the deflating and the inspiring.

 

Follow @suleikajaouad on Twitter and on her Facebook Page.

A version of this post was published on the front page of the Huffington Post on 1/10/12. 

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10 Responses to “Good Afternoon, You Have Cancer”

  1. viveksemiotics January 8, 2012 at 7:12 pm #

    Suleika, this is very thoughtful and well-written. Keep posting, it really takes a lot of energy and commitment to do this. My most heartfelt wishes. Vivek

  2. Tim January 9, 2012 at 1:29 am #

    Well said Suleika. The emotional roller coaster seems to take as much of a toll as the medical twists and turns. Stay strong!

  3. SD January 9, 2012 at 12:30 am #

    I got goosebumps reading this post.

  4. name January 9, 2012 at 12:43 am #

    Great Blog my love ,thank you for sharing with us!
    I will Follow.

    Mumu

  5. larry abrams January 9, 2012 at 5:26 pm #

    hey, besides being brave to share this, you have a lot going for you. i’m going to share every thought that i think could help. geraldine was told she had 6-12 months when she was diagnosed; she had 39 super months. they just recently came up with some new powerful meds, too late for her. she did well because she , like you, had a strong spirit and was dedicated to living.( i remember you as a little kid;) we did a lot of research. i brought abstracts of studies to her doctors, who can’t possibly treat patients and read everything simultaneously. we got her a combo of meds that nobody had tried before. it helped a lot, but the docs had to be convinced it was worth a try first. we insisted on aggressive treatment. you can read just as well as they can, and will soon learn the language of research well enough to converse with doctors as a peer. the best doctors welcome this. not one was dismissive or arrogant ( we went to MSK in NY, and Dr. Mastrianni at home.
    geraldine used to say’ “i wouldn’t wish for this, but i’m not sorry it happened to me”. she meant that she learned to see life so differently and learned to accept love from unexpected quarters and give up the feeling of having to control everything, an illusion we sometimes hold. you have a good chance of having many good years. you will grow a vision for quality of life and an appreciation that you might never have discovered. i wish you the best, and i wish for your parents, comfort and strength.

  6. sylvie January 10, 2012 at 12:29 am #

    Thank you, dear Suleika, for speaking out. Your writing is so clear.
    It is unimaginably difficult to cross such an awful roadblock as this terrible disease is.
    Despite the pain, worry and boredom, keep up the faith. Take deep profound breath, we are made up of air mostly and with each breath feel the presence, the mystery that life is. Take strength in knowing that the all world wants you alive and well, fight as hard as you can. Take charge, eat well whenever you can, drink a lot, clear your mind with meditation and trust.
    My friend Jeanine, a nurse, had a patient who twice had your disease, she kicked it at last:
    you can do it! I love you and yes, I’m here if you need anything. Sylvie

  7. steve January 15, 2012 at 7:41 pm #

    I feel for your journey through this…however I do disagree with some of your things not to say..as a stage 4 colon cancer (victim, sufferer, putting up with, whatever, I can’t tell people who respond to the news,(that sucks ), don’t say that. Jeeze, They’re feeling awkward and at a loss for words as I would be. As long as they don’t come back with ” oh too bad, how ’bout those giants” , I accept any response out of somebody that just got hit with that bomb. Besides, if I’m telling them, that’s somebody that needs to know,not just some random stranger.I feel the need to make them feel less awkward.

    • suleikajaouad January 15, 2012 at 9:45 pm #

      Steve–Thank you for your comment. I want to clarify that this list is simply meant to be a helpful guide for those who would like tips on how to talk to someone with cancer. It is based on my own personal experience and in no way definitive. I’ve found that when someone says “that sucks” in response to hearing my diagnosis, it can be upsetting. I don’t blame anyone for how they respond or for feeling awkward and at a loss for words. As I try to make clear in #10: “It is okay to make mistakes.” I am merely suggesting that the phrase “that sucks” should, if possible, be avoided as it could be potentially upsetting to someone who may be feeling sensitive and is already having a difficult time.

      I wish you all the best.

  8. Christie Campos January 20, 2012 at 8:08 pm #

    Suleika, I look forward to reading your blog and I pray that you will find yourself at the end of this challenge not only cured but also better than ever. That was my goal for myself after I had the chance to let my breast cancer diagnosis “sink in” back in 2010. I was 34 at the time and told i had stage 3b (advanced breast cancer with lymph node involvement”. It was the strangest, scariest and most amazing year and a half of my life. I hope you are in the care of awesome medical professionals as I was and that you keep your spirit strong, cancerhood is a family or community no one asks to be invited to but you will be amazed at how much love and kindness you will discover along your journey. And everyday you wake up is a blessing. May all things good and healthy come to you.

  9. sylvie degiez January 20, 2012 at 10:46 pm #

    Not sure if you are reading comments, but if you are, know that you are never too far from my thoughts.
    Life is very complicated and the best way to get rid of guilt is to judge no one, not even yourself.
    Guilt is mostly a learned behavior, it is a powerful tool of manipulation between people and difficult to harness. We make people feel guilty and we let them make us feel guilty.
    It is very harmful if we let it sip into our life. The best way is to observe it with great attention and slowly dismiss it. It is all a mystery but you have power within it, even if you are ill.
    I love you and look forward to see you, whenever you’re ready for me.
    Sylvie

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