My 3rd Rebirthday: Part 1

On September 24 I reached 3 years post-BMT. This is a milestone that I never really imagined for myself, and being alive years after receiving essentially a terminal diagnosis continues to shock me every day. That said, this past year was horrific and traumatizing in even more new ways. It seared into me an intense fear of living – of what could happen to me next, of truly grasping the soul crushing fear that comes with realizing that no one can take this pain away should it reappear. But before I address this past year, I want to set the scene. This is a note that was written for my disability accommodations last fall. This is everything that happened before this past year. This is how utterly tired I was when the scleroderma was only just setting in. Reading this note doesn’t ever stop shocking me, and I lived it. I just want to let it speak for itself.

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For reference, I was in school January – June 2017, in New York City working full time in summer 2017, and back at school in fall 2017 (before leaving when I went into renal failure). This note ends in November 2017, one month before I went into renal failure and left school.

 

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2 thoughts on “My 3rd Rebirthday: Part 1

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  1. Brooke,

    Google is an interesting way of making connections. Found your blog post though an online search today. I was diagnosed with AML in Jan ’13, BMT in Jan ’15 from my brother as well. Looking at my 4 year B-day this coming Jan 6/19. My recovery seems less eventful then yours, but has been (and still is) quite a journey. My latest is a Scleroderma GvHD issue where I am currently receiving treatment. My involvement is mainly in my lower legs, so hoping this does not progress to much further.

    Not sure why I’m responding, but your story is very similar to mine, so I guess this makes us siblings of a sort. No motivational comments from me, just know that I understand what you are experiencing and wish you all the best. So many of your words could be my own. Life is precious, so enjoy every moment you get. We will all die at some point so it only really matters how we live. Therefore my wish for you is for as many moments as you can find, be well.

    Ian K.

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    1. This is exactly what this blog is for! Thanks for leaving a comment. I really, really hope your scleroderma doesn’t progress. IL2, Photopheresis, and imatinib really turned me around (and prednisone, ugh).

      These past few weeks have been among the hardest for me for a weird reason – I’m doing better. After being in survival mode for so long, finding joy in every day is a whole new task. But I’m working on it. Thank you for commenting ❤

      Like

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