Let me start out by saying I’m not dying…at least not today, as Syrio Forel would say. I’ve been diagnosed with hairy cell leukemia – a chronic, slow-growing blood cancer, with an excellent prognosis. The standard treatment is a chemo drug called Cladribine, which 80-90% of people respond to. Of that 80-90%, the majority get complete remissions after one cycle of Cladribine. The average remission time is 10 years.
So there are a lot of reasons to feel hopeful – but that’s the outlook I’m slowly coming around to now, after three very difficult months of uncertainty and fear and loss of control. In that time, I looked for stories of people who have survived cancer and dealt with chronic illnesses. Finding online communities and talking to people who knew what I was going through meant so much – it meant that I wasn’t alone.
At the same time, it’s been really difficult as a young woman with HCL to find studies and information and research that could help me to make treatment decisions. I’m a rare case of a rare disease – of the 600 HCL cases diagnosed in the United States each year, the vast majority are men, and the median age of diagnosis is 50. I was 24 when I was diagnosed.
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 share the story of my diagnosis and some of the thinking it's led me to explore. I'm putting this story out there so that my family and friends and strangers who might relate can follow along - but also because I always wanted to give podcasting a try and being faced with one's own mortality can be a pretty strong motivator.