This is the text of a talk I gave at UCLA’s Information Studies department back in 2015. I think I meant to someday do something with it but my dad had just died, then I got locked out, then cancer hit my family, then cancer hit me. I’m getting my writing back up and running these days, but it’s slower going than I thought. Rather than let all that work sit forever in my dusty ol’ dropbox account, I thought I’d post stuff here in case it’s of use to anyone writing on these topics these days.Read More →

I watch my hands peeling carrots. I am watching my hands peeling carrots. We are out of apple season, the apples are soft. It is time for carrots now. We have a new peeler after the last got lost somewhere. It isn’t the thin aluminum peeler from my youth, not anymore. This one is heavy in my hand, it isn’t steel I’m sure, but it could be. My mouth so dry breakfast sticks in my throat. Peeling carrots, carrot after carrot. We are going to the ballgame. If we have enough carrots, maybe we won’t get hungry. My mind does not work like it usedRead More →

I had the enormous pleasure of chairing a panel at the OAH conference in Philadelphia last week. Here’s our abstract: I offered some framing of the conversation, which I’m sharing below. Given the structural conditions all of us face, any conversation about the production, organization, preservation, circulation, and meaning-making of “stuff” inside and outside the academy must account for the conditions of increasing precarity faced by all of us. I was so grateful for Michelle Caswell, Stacie Williams, Eira Tansey, and Michelle Moravec for the discussion they enabled, and I hope the conversation continues. Good morning, and thank you for getting up at 8am onRead More →

What would it mean to be done? We don’t know if the chemotherapy worked. We’ll know if I don’t get cancer again. We don’t know if the radiation worked. We’ll know if I don’t get cancer again. We don’t know if the hormone suppression is working. We’ll know if I don’t get cancer again. It has been twelve days and I have had four blood draws, two intramuscular shots in the butt and the gut, a surgical consult, two new drugs, dosage changes on two other drugs, a consent for a clinical trial. I have scheduled one surgery, one baseline bone density scan, a consultRead More →

The way to be good at receiving radiation treatment is to stay still, to not move at all. They will tell you breathing is okay. They will tell you swallowing is okay. Both feel like violations alone in the dark on the bed, breathing and swallowing and staying still, not moving at all. They will tell you to turn your head to the right when receiving radiation on the left, to the left when receiving radiation on the right. You don’t want to get a sore throat. I don’t understand how any of this works. Dr. Radha told me to apply Aquaphor to my shoulderRead More →

I have been looking at October 22nd since July 18th. But I have pain in my feet that is making standing and walking difficult. These are signs of chemotherapy-induced neuropathy that can be permanent in about 20% of patients. So the doctor and the people who love me but who are not enduring this wanted to cut the dose of Taxol from one big dose today to three smaller doses administered over three weeks. Laura, Carlyn, and Karen were with me. Add Marcus who’s working at reception and one of the five of us would have permanent nerve damage in our feet if I proceededRead More →

How are you doing? or, more commonly How’s Emily doing? I have completed four rounds of AC chemo and one round of T. I have three T rounds to go. I will get those three rounds on September 24th, October 8th, and October 22nd. It is September 19th. It is really only about a month to go. When I tell people that number, that October 22nd number, invariably some version of “that’s soon!” comes out. It took me four hours to crawl out of the F train stop at Jay Street-Metrotech this morning, a month to walk from Carroll to school last night. My therapistRead More →

I spend some of my time these days in various online support groups for people with cancer experiences like mine. Discussions aren’t about, like, how we’re all gonna die and maybe sooner than we thought, but about breast reconstruction choices: flat? Implants? Various genres of flaps? Etc. Some people defend their choices as the best choice for everybody (people who choose no reconstruction seem particularly prone to the universal claim), there’s a whole evidence-free argument against implants because they “cause” everything from fatigue to rashes to rage (I suspect we get these things anyway), it’s a little like Yelp where you only hear about poorRead More →

It’s labor day! This is a time to be out in the streets or at the beach. I am at home on day 6 of my last AC chemo cycle. Side effects are super real, and mine are keeping me indoors. The chemo is making me wildly sensitive to the sun, like even more than usual, I get a sunburn walking to the subway even with a giant umbrella and a hat and sunscreen everywhere. So I’m in my kitchen, working. And I’ve done quite a bit of working over the summer. My body has been working for sure, even if in ways I don’tRead More →

I am two days out from my third AC infusion. A woman from my health insurance company called me today. She calls every couple of weeks. I am not sure why she is calling me. She asks me how I am doing and I tell her and my guess is that there is some evidence-based practice guideline that says getting cancer patients to describe how they are feeling to a healthcare-adjacent person produces a more positive attitude about cancer. This is not true for me. I don’t know why she’s calling. My second infusion was scheduled to start at 11:40, done in three hours, DebRead More →