Episodes - Anna and the Hairy Cells

On November 23rd, I got some good news: I'm in complete remission with no minimal residual disease! This will be the last episode of the podcast for now - so here are some closing thoughts and intentions going forward. I also sit down for a conversation with my boyfriend Hoku about what this experience was like for him as a primary support person during my illness. Thanks for following along with my story - it helped a lot to be able to share it with you.

HCL patients are lucky in that most of us respond well to the available treatments, but there’s no denying that it’s a serious disease, and there have been points when it brought death and mortality to the front of my mind. I tend to have pretty interesting conversations about this stuff with my brother Art so I asked him to join me on the podcast today to chat about different ways of thinking about death.

After a longish hiatus, here's One Day at a Time, a new episode that covers the remainder of the time I spent in DC for the first half of my treatment. There were days of fatigue and intense nausea, and days of fun with visiting family and friends. Days that I felt overwhelmed and days that I felt totally capable of handling this. Usually, the latter were because of the awesome people in my life.

On October 9th, we flew to Washington DC so that I could get treated at a clinical trial at the NIH. After a couple days of every kind of screening test imaginable, I was officially in the trial and could start treatment. This episode documents the first week of treatment, and my first trip to the nation's capital.

I have decided to participate in a clinical trial at the National Institutes of Health in Washington DC, to receive a combination treatment with two drugs - Cladribine and Rituximab. Particularly for any other HCL patients out there, this might be a helpful, brief primer into how the two drugs work.

My name is Anna, and in July 2016, I was diagnosed with hairy cell leukemia, a rare, slow-growing blood cancer of the B cells. During the past few months, I’ve kept notes on my day-to-day experiences and conversations. And now, as I get ready to start my treatment, I wanted to go back to tell the story of my diagnosis. My brother Haik helps to provide medical background and expertise.