Another starfish gone
It is with great sadness that I pass along that Lindsey Miller, who wrote the blog I am a liver–as well as countless other articles in other publications–died on May 21, a day and a half after she and her boyfriend had a “commitment ceremony” in the hospital where she was being treated for carcinoid/NETS.
Lindsey’s was one of the first blogs I read after we first set up this page at the beginning of September, 2011. It was very hard for me to read–not because it was poorly written–it was very well-written–but because everything she wrote reminded me of what Jane went through and the attitude Jane had, right up to the end. Even her lightest pieces made me cry.
Telling the carcinoid/NETS story
In real terms, their stories were very different. Lindsey was a recent college graduate working on a master’s degree that she finally earned. Jane was ready to retire from 30 years of teaching. Lindsey made the trip to Germany for the PRRT Jane and I did not even have the time to find out existed.
Every carcinoid/NETS patient has a different story–except for the ending. The course of every carcinoid/NETS patient’s disease is different–except for the ending. Or at least it seems that way from my perspective.
A time to mourn
But they all share one other thing–an incredible optimism that this treatment or that new procedure or this operation will be the one that sets them free and lets them live a normal life–the life too many of us take for granted. Weddings are not supposed to happen in hospitals days before one of the partners dies. They are supposed to happen in sacred places and mark the beginning of a new life on Earth–not end within hours.
Lindsey and I never met, but I mourn with Jeff–who should have been her husband and partner for many years–and with her family–who should have delighted in her books and her children far into the future. I mourn for all the things that now will never be.
Among the thirty-four
Thirty-four human beings die of carcinoid/NETS every day. That thought comes to mind every night when I crawl into my empty bed. It arises with the sun of each new day. Some days, I know their faces. They are people I have encountered briefly in some online patient support group or spoken to at a patient conference.
Other times–as in Lindsey’s case–they are people whose stories I know in too great detail for a nod and a shake of the head. Their death takes me back to the moment the doctors told me there was nothing more to do–takes me back to Jane’s last breath caught on my own lips.
The other war
Today is Memorial Day–a day for remembering those who have died in our nation’s foolish–and not-so-foolish–wars. But there is another war that grinds on year after year that we never–as a nation–stop to remember the lives it has stolen. Carcinoid/NETS is often a forgotten and ignored front in that war–and that makes its casualties all the harder to bear.
Good night, Lindsey. We will miss your words, your smile, and your infectious optimism.
