Am I a Cancer Survivor?

12 Jul

By SULEIKA JAOUAD

Photo Credit: Seamus McKiernan

 

It was the annual fund-raising event for the Hope Lodge, my temporary home after a bone marrow transplant. The host asked all the survivors to step forward from the crowd. I froze. I didn’t know if that word applied to me. What does it mean to be a survivor? I certainly didn’t feel like one. Not yet, anyway.

The first time anyone used the word “survivor” in reference to me, I had just been admitted to the bone marrow transplant unit of Memorial Sloan-Kettering Cancer Center. A nurse came into my hospital room to review the transplant calendar with me. The transplant had been looming on the horizon ever since my diagnosis with leukemia in May 2011. The nurse briefed me on the sequence of events: intensive chemotherapy, followed by the transplant, and then a four- to six-week hospitalization. I noticed something on the calendar that I hadn’t seen before.

“What’s that?” I asked her, pointing to a meeting scheduled for three months out. The box on the calendar was marked “Survivorship Meeting.” She explained that it was an orientation for patients navigating the world after a transplant. At first, I felt uncomfortable and then a little angry to see that the meeting was planned for three months away. It may as well have been set for 2015. It was hard to imagine ever getting there. As I tried to prepare for a life-threatening transplant to treat my life-threatening disease, I wondered if I would survive to attend the survivorship meeting.

In the cancer world, the term “survivor” is as ubiquitous as it is hard to define. Some cancer patients I’ve talked to feel that it’s too much territory to cover for a single word — every cancer patient has a different diagnosis, a different prognosis.

Continue reading, here.

Follow @suleikajaouad on Twitter and on her Facebook Page.

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7 Responses to “Am I a Cancer Survivor?”

  1. Shane July 12, 2012 at 11:07 am #

    Strength and love to you!!
    xoox Shane

  2. The Bone Marrow Foundation July 12, 2012 at 11:07 am #

    Reblogged this on The Bone Marrow Foundation and commented:
    It has been 90+ days since Suleika Jaoud had a bone marrow transplant to treat myelodysplastic syndrome (MDS) and acute myeloid leukemia (AML). Now, she contemplates when someone should be called a “survivor” and what that actually means.

  3. Andy July 12, 2012 at 1:43 pm #

    Reblogged this on I'm Not Sick, I Just Have Cancer and commented:
    What does it mean to be a cancer survivor? For everyone it is very different, for some they can’t even use the word ‘survivor’. I accept and embrace the word – for it means that there is still life, energy, spirit, and opportunity within you to push on, to push forward. I take my cancer survivorship as a challenge to be a spokesperson for research and to be a sounding board for anyone who is facing the challenge of living a life with cancer.
    Once you are diagnosed with cancer, your life changes – it is a life with cancer. And to live that life, you must learn how to survive – survive the treatment, survive the uncertainty of what your next scan or blood test might bring, survive how it changes your body, mind, and spirit. There is a lot of survival in living with cancer. It can be hard for some to handle and grasp, but it can be embraced and give a sense of direction and purpose in your life.
    (Secrets of Cancerhood is a brilliantly written blog by Suleika Jaouad, who is currently undergoing treatment for acute myeloid leukemia. Her blog is captivating, thoughtful, and inspring, and is featured on the New York Times.)

  4. Genevieve Thul @ Turquoise Gates July 12, 2012 at 2:07 pm #

    I have thought about this alot. While I did the survivor laps with my kids walking with my (I have four) while I was in treatment for 4 years, I never really identified as a “survivor” until I hit remission in February. But I found I felt uncomfortable with the term even then. I feel more comfortable just being a person, a question mark just like everyone else. I wrote about it myself back in March, a month after I got news of my long awaited remission. I thought you might be interested in reading it. (of course I have no idea how widely read you are and if you have time for little bloggers like myself. Cheers and best wishes during your recovery! I am also a former BMT nurse and supporter of Hope Lodge so I feel close to you because of that)
    http://www.turquoisegates.com/2012/03/question-mark.html

  5. Jonathan Chamberlainj July 14, 2012 at 5:11 pm #

    Many people put all their trust in doctors, drugs, technological solutions and so on. I sense that this is where you are. Maybe you might wish to explore other paths as well – I have been involved with thinking about cancer for over 18 years and the result is a book just out called The Cancer Survivor’s Bible http://www.fightingcancer.com. I think you will find much of value there. I hope so. A beautiful, thoughtful person such as you are should hang around a long while longer.

  6. Taira A. July 16, 2012 at 4:05 pm #

    Thank you so much for this article Suleika. I have been following your blog for months now and you do such a fantastic job of saying what I can’t articulate. I was diagnosed with an incurable form of lymphoma is August 2010. Thankfully, for now, I am asymptomatic and we are just watching and waiting…as a mom to a 5 year old, I will take as much watching and waiting time as life will give me. A group of collegues created a Relay for Life team in my name last year and i was so overwhelmed when they were all encouragaging me to join the survivor’s lap. In the end I didn’t…I didn’t feel like I had DONE anything. I wait and worry and go for blood tests, CT scans and regular three month check ins…but I truly didn’t believe that I KNEW what it meant to survive cancer. I hadn’t gone through any treatment, I hadn’t lost my hair, what did I know??? This year, I intentionally chose to not be there for the start of the relay so I wouldn’t have to deal with the stress of deciding what to do. My husband and I spoke of this and my question was exactly that which you have broached here…what makes someone a survivor? It makes me feel so much better to know that I’m not the only one struglling with these feelings of ambiguity about a word…I will be sharing this post with my husband and I thank you for sharing your journey with us.

    Keep fighting sweetie! You will beat this and then you will KNOW you are a survivor!!!

  7. Antonio C. July 27, 2012 at 12:55 am #

    My name is Antonio Camargo I was 20 about to turn 21 when I was diagnosed with AML leukemia. I underwent a MUD 10/10 transplant and was a success. It’s been almost 2 years since my transplant and I am doing fine. In fact, I even went back to training MMA. All traces of the myeloid cancerous cells are gone. I know what you went through and I just want to tell you thank you for sharing your story. I wish you luck and good health. Stay strong.

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