Archive | July, 2012

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.

Join me for a “live chat” on the New York Times today at 4pm EST!

19 Jul

Hi Friends!

Today, I will host an hour-long Facebook conversation on the New York Times about living with cancer in my 20s. The chat will take place beginning at 4 p.m. E.T. on the NYT Well Facebook page.

Join me if you can!

At 4 p.m. EST, go here to join the live chat: http://well.blogs.nytimes.com/2012/07/18/facebook-chat-with-suleika-jaouad/

Thanks and see some of you there!

(if you don’t have a Facebook account, you may have to sign up for one and click “Like” on the NYT Well Facebook page)

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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