My journey with lung cancer has involved a lot of ups and downs and sometimes the downs have been a slippery slope indeed. In the summer of 2008 I was told I had only three to five months left to live and death quickly became my familiar. Fortunately, crizotinib intervened just in the nick of time. However, because I am so far out on the medical frontier, whenever I have started an experimental therapy it was with the knowledge that there was not yet a plan B. Each time my cancer has crept back, so has the specter of dying.
Several years ago my health had taken a serious turn for the worse again and I started thinking about the way in which I would die. The most likely scenario was that I would be in a hospital bed, hooked up to a lot of tubes. And I decided this was not what I wanted.
Alice and I had already spoken about my desire to donate my lungs after I died. At my next appointment I had a question for her. If my tissue was frozen, would it still be viable? I then explained to her that in order to take back some control, I had come up with an exit plan. Simply, that I would walk out into the woods (it was winter) and lie down in the snow until I had frozen to death. I went on to say that I had given this a lot of thought. As the daughter of someone who had committed suicide (my first stepfather flew his plane into a cliff on his sixty-fifth birthday) I knew how devastating it was to have to deal not just with a suicide, but with one in which your loved one’s body is disfigured. That I felt my family would understand suicide under these circumstances (as a way to avoid suffering and a loss of control). That I had done some research and although I would be blue (and crystalized, kind of cool), it would not be like dealing with a gunshot wound or some other violent form of death. But I needed to know if frozen lungs would be ok.
I told you Alice can just roll with things. Her response? ‘I’ll have to look into it’.
Months ago I was interviewed for an article in STAT about the ups and downs of life (and death) when you are dependent upon targeted therapies. Bob Tedeschi was the reporter for the piece and the first time he interviewed me I told him my story about walking out into the woods. Bob, like Alice, is someone who just rolls with it. I am happy to say that I did not frighten him and that we have, in fact, become friends.
Bob is a tremendous writer and he is tackling all sorts of issues pertinent to end of life. His latest article is about rapid autopsies; hence my rather weird (but not if you know me) share.
It’s not easy thinking about our personal demise and harder still to discuss it. However, my own experience has been that the things we fear the most are those which we don’t understand. Talking about death–making it my familiar–has eased much of my personal anxiety. And as for those biopsies? I don’t want my personal contribution to medical research to end with my passing. I urge each of you to take the awkwardness out of this dialogue (for both family and your oncologist) by bringing it up yourself. Consider it part of your personal legacy.