Sunday, April 26, 2015

Lindsey, Livers, and Living



I've been thinking a lot about Lindsey lately. May 21st will mark one year since she left us, but her presence still looms large in my mind. Her blog showcased her clear and unique voice. I miss her posting about life as a liver

I still can’t read Lindsey’s blog without crying. I didn’t know her, had never met her, and only knew that like me, she had an incurable cancer. And she was so young! Much younger than me. Twenty-six and just finishing grad school. She was vibrant and full of life. Looking at the picture on her blog, you could almost see the possibilities stretched out before her. She was newly diagnosed and knew that the journey before her was challenging, but she didn’t act like cancer was her salvation or her mission or her ruin. She viewed cancer as one aspect of her daily life, and she called herself a liver.

Lindsey had metastatic pancreatic neuroendocrine cancer. Metastatic. It’s such an ominous word, and it’s as bad as it sounds, maybe worse. Metastatic means the cancer has spread beyond its site of origin. Metastatic means you are in no way curable. You won’t be a cancer survivor. You will never be cancer free. You won’t beat this thing. You just have to learn to live with it.

Lindsey had metastases in her liver. With neuroendocrine cancer it’s never just one tumor in the liver. And invariably, one of the tumors is located near an important blood vessel, making surgical removal tricky at best, dangerous at worst. Once you have tumors in your liver, that’s it.

So how do you live with a ticking time bomb in your liver? How do you go about your daily life? That question is probably unanswerable. Ask fifty people, get fifty different answers. If you were like Lindsey, you lived your life with the sense that you still had plenty of it left. And not in a “positive attitude will get you everywhere” sort of way. A practical, no-nonsense, go about your daily life with all its ups and downs sort of way. She wrote about her frustration when things were challenging. She wrote about her future and saw herself in it. She celebrated her messes and her successes.

I first came across Lindsey’s blog when I was crowdfunding to pay for experimental treatment in Europe. She was doing the same, and her blog was different and real and allowed me to feel by proxy. Feeling by proxy. I couldn’t feel emotion about my own condition, but I could look at Lindsey and be moved by hers. We both had all the same treatments. We both had major surgery that palliated our cancer...for a while. We both travelled to Europe for experimental radiation treatment that shrunk our tumors...for a while. We both used a cocktail of off-label oral chemotherapy that worked...until it didn’t. We both tried not to let the disease define us.

The first picture I remember of Lindsey she looks so sunny and young. She’s smiling and she looks intelligent and poised and happy. Happy. The last picture I saw of her was taken a few days before she died. She still looked happy. She was in a wheelchair in her wedding dress, with swollen ankles and sunken eyes but still had her sunny smile. She’s surrounded by friends and family on her wedding day. Something in me broke when I saw that picture. Did I see myself in Lindsey like I always had? Was I getting a glimpse of one more thing we would have in common? That picture doesn’t allow me to hide in denial. And it makes me cry every time. I cry for Lindsey, and for everything we’ll never get to be. 





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