Tuesday, October 18, 2011


I'm not much of a numbers woman. Those who've tried to figure out a restaurant bill, or study for the GRE with me can attest to the fact that math is not my forte. Yet, there's something about this time of year: the language of the Jewish high holidays that talk about an accounting of our lives, the disproportionately high number of birthdays amongst my family and friends, and the transformation of the season, that tends to make me more numerically-minded. Today is a significant anniversary and I have numbers on the mind.

It's been five years to the date since my original diagnosis of Nodular Sclerosing Hodgkin's Lymphoma. It was two days after I turned 23 years old, and I got the news sitting on a hospital stretcher in a room at the George Washington University ER, sitting beside my friend Emily, who's been by my side in the five years since. The ER doctor on-call that night retrieved the biopsy results, which had been taken five days earlier and were still being processed when I was admitted to the ER for dehydration and feeling faint. After delivering the results, he patiently answered our questions, then walked to the door, turned back toward the two of us sobbing on the bed, and said, "have a good night, ladies." Emily and I simply burst out laughing. I don't hold this automated farewell against him: I share this anecdote because I like looking back and knowing that within five minutes of my diagnosis, I had a good laugh.

It's been five months to the date since my transplant and though life is almost back to normal, I am still dealing with weakness and a slew of temporary and permanent consequences from treatment. And I guess I shouldn't be shocked, because today, a day that felt appropriate for accounting, I totaled up some other numbers. During these last five years I've had 33 doses during 27 cycles of seven different regimens of chemotherapy that included 16 different chemo agents. I had 10 separate stays at three hospitals plus three surgeries and two rounds of radiation totaling 40 treatments; 80 if I'm counting each dose administered.

Five. We're reclaiming that number as a lucky one today. My graduate program will be five years long. And in five more years, if scans stay clear, my status will change from "in remission" to "cured."

Most importantly, there have been five matches so far. Five other people in need of matched unrelated bone marrow donors have identified their five donors through drives that you - my family and friends - organized. Five people found their matches because of your efforts, and those are just the ones that we know about through the great notification system that the Gift of Life has set up. There may have been, and surely will be, even more through the Be The Match registry that so many of you worked with. Five matches already found from drives held within the last 15 months alone.

I'm thinking about all of these concrete numbers today, but most days it is the unquantifiable that I reflect on and stand in awe of. The countless acts of kindness received, lessons learned and meaningful interactions. The work that you all did to help find my match, to raise money, awareness, blood, plasma, platelets and register thousands of new potential donors in the Bone Marrow Registry.

Lest this post be too much about the cold numbers alone, I wanted to share this quote from Audre Lorde's The Cancer Journals, which feels apt in summarizing my aspiration and sense of these last five years, and perhaps, to some degree, the next five as well.

"I work with the consciousness of death at my shoulder, not constantly, but often enough to leave a mark upon all of my life's decisions and actions. And it does not matter whether this death comes next week or thirty years from now; this consciousness has given my life another breadth. It helps shape the words I speak, the way I love, my politic of action, the strength of my vision and purpose, the depth of my appreciation of living." - Audre Lorde