By Way of Explanation

Welcome to Sojourn & Stardust.

In November of 2017, I was diagnosed with Stage IV adenocarcinoma, a non-small cell lung cancer. Presently, it is not a curable cancer. When I got my diagnosis I didn't want to tell people. I didn't post anything on Facebook. I didn't tweet it. It took over a week for me even to tell some people in my family. I was freaked out and terrified, and I wasn't so sure I would even begin making sense as I tried to let those dear to me know what was happening. Eventually, I did start a Caring Bridge journal, so that family and friends could keep up with what was happening in those earlier days. I liked some of the privacy protections Caring Bridge offered, and I was grateful to be writing for a small, intimate audience.

But as the weeks went on, and as I got stronger as a result of treatment with a targeted therapy called crizotinib (trade name Xalkori), I began to think more about what what it means to live with an incurable illness. So I attempted to Google myself into a better understanding of what my life with "terminal" NSCLC would be like, and I came across some blogs written by other lung cancer patients. Some of the blogs were inactive; the patients had died, so that was pretty depressing. But there were plenty of other active blogs being written by people like me -- regular folks -- and these blogs have been incredibly helpful to me. They are hopeful and funny and sad and real and informative.  And they are being written by people who have lived for months and years with this disease. Well, I thought, I'm a writer. I could blog, I suppose, about this whole cancer business. Maybe I too could be a little bit helpful that way. The problem was, I hadn't been really keen about the whole public persona thing - I haven't been so sure how I feel about being the person with cancer writing about the CANCER. And I'm still not so sure. But.

The more I read, the more I realize how vital it is that people with lung cancer become advocates for other people with lung cancer. This disease is one of the most stigmatized and under-researched cancers. Over these past few months, I have come to believe it is absolutely necessary for those of us living with the disease to speak out, to undo the stigma, and to advocate for more research if we can. I can, and so I am.

My intention is to use this blog space to tell a story bigger than my own. While I will post my treatment updates here, along with musings about what it's like to live with this disease, I also hope to post other news from Cancerland. There's actually lots happening in that part of the world -- research, advocacy, hope. Thank you for joining me on my sojourn here.