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.

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5 Responses to “100 Day Update (VIDEO)”

  1. Banana July 28, 2012 at 12:06 am #

    Hi Suleika! I truly admire your strength and persistence to conquer this challenge in your life. I have known people who are recovering cancer patients but have not experienced being a caregiver or family member first-hand. You are quite a role model because you are incredibly brave. Thank you for opening my eyes to cancer within a young adult. Sorry for being corny and sounding stupid but it is honestly true. I wish you the best of luck and happy 100+ days!!! 🙂

  2. Jemma August 8, 2012 at 9:35 am #

    Congratulations on reaching 100! Seeing some of what you haven been through has been heartbreaking to read and watch. I’m not sure how you have made it through this far, but somehow you have. I am relieved that you are starting to feel a little bit better, but understand why you would still be cautious. Good luck with your move, and the next onslaught of chemo.

  3. heidi downing August 11, 2012 at 12:31 am #

    HI there,

    I am a friend of Seamus, Heidi Downing. I just showed my cancer survivor friend your blog. We were both moved. She totally understood and agreed with all the do’s and dont’s.

    Keep up the writing. You are great at it.

    Love to you and S,

    Heidi

  4. Gaetane August 13, 2012 at 9:02 am #

    Hello dear,

    great post and video once again. I follow your posts regularly. I don’t write a lot, but I very often think of you, and for what it’s worth, am sending you hopeful vibes from over the Atlantic. Your moving in with your boyfriend in a new flat is excellent news, and I do wish you all the best!

    Take care, and do give a big kiss (the famous French “bise”) to your parents and Adam!

  5. Kim August 29, 2012 at 10:29 pm #

    Dear Suleika,

    I hope that you’re feeling well these days, and I send you my very best for your career as a writer. I’m a 22-year-old New Yorker who just graduated from Barnard and who has aspirations to live in Paris and write books. I studied French literature in college. I don’t really know what to make of the freedom I have now that I find myself outside academia for the first time.

    Reading your posts here and at the NY Times Well Blog has made me imagine what it would be like to be in your shoes, to have my life interrupted. I feel that, through your writing, I’ve been able to glean some wisdom about everything from medical bills and un-cluttering your social life. I just wanted to thank you for that wisdom, and for telling your story with humor, candor, and optimism.

    I spent one night in the hospital last summer for an infection, and I remember the relief I felt when I finally got out of there–just a day after arriving–so I can only imagine how hard it is to be hospitalized for 45 days or more. I am impressed by the strength you must have summoned to handle all that.

    I look forward to reading more from you!

    Best,
    Kim

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