About the Condition

In October 2014, I was diagnosed with severe aplastic anemia (sAA). Basically, it’s a very rare condition in which my bone marrow no longer functions properly to make enough red and white blood cells to sustain efficient oxygen exchange and immune response. There are no definitively known causes for this condition, but correlations with reactions to certain drugs or viral infections are some main hypotheses. My doctor thinks I developed this from an immune response gone wrong against recurrent mono from last summer. Sort of an autoimmune type thing where my immune system is attacking progenitor cells that make red and white blood cells. Read more here.

The curative course of action for sAA is a bone marrow transplant. Luckily, last fall I found a perfect 10/10 HLA-type match who was willing to be my donor. In March of 2015, I was in the hospital for a month and received the bone marrow donation. Unfortunately about a month after the transplant, the graft failed and my cell counts began to plummet. Over the summer of 2015, my own immune system, being robust as it is, began to slowly recovery and has provided a loose framework of an immune system.

We continued my treatment with a second transplant on October 28, 2015 with peripheral blood stem cells (PBSC) from a different donor. I was discharged from the hospital on day +12 to continue my recovery at home since I fared rather well at the hospital, despite a rough bout of serum sickness towards the beginning.

I urge you to please please consider joining the bone marrow registry, BeTheMatch.org. It’s as easy as either going to a signup drive or requesting a kit where you send a cheek swab to join the registry. Your simple, but generous contribution to the registry could save a life (like mine!) one day.


Why “The Bald Hemiola?”

hem·i·o·la ˌhemēˈōlə/
noun MUSIC
  1. a musical figure in which, typically, two groups of three beats are replaced by three groups of two beats, giving the effect of a shift between triple and duple meter.

One of my favorite rhythmic gestures.

heme  hēm/
noun BIOCHEMISTRY
  1. an iron-containing compound of the porphyrin class that forms the nonprotein part of hemoglobin and some other biological molecules.

The active compound of the protein hemoglobin responsible for carrying oxygen or carbon dioxide in the blood stream.

bald  bôld/
adjective
  1. having a scalp wholly or partly lacking hair.

Unfortunately, some of the drugs I will be taking have alopecia as a side effect. To beat them to their punch, I hosted a dinner party with some of my dearest friends both in SF and across the country where I shaved my head. It was quite the spectacle! I couldn’t ask for better friends. I’m truly, truly blessed and so incredibly grateful for the love and support I’ve received from everyone in my life. 🙂

Thus, since I’m bald, in need of heme, and love the hemiola, thebaldhemiola was born. I’m so pun-ny.

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