Monthly Archives: December 2016

No Kate Left Behind

zach-christmas-2016

This. This right here is the most powerful thing I know: this bizarre freight train of love for a boy who asked for a fly swatter (see bottom right of photo) and car keys (without a car) for Christmas. This is my beating heart. I leave hours and hours open every day to be someone’s mom and someone’s wife. It is one of the only things that I know with an intensity and a language that people usually reserve for describing “a call” or at least a socially disruptive hobby.

But what I realized in these last two months since my glorious scan news is that if I want to do anything other than being a mom and a wife, it gets ugly. Cancer, as it turns out, is always trying to take everything. It wants your health, mostly, but settles for happiness, strength, peace, and all your time. Oh my word, the amount of time is lethal. If cancer doesn’t kill me, mountains of e-mail and paperwork will.

This is how it happened. It was 15 days after my last scan and I was still basking in the afterglow of GOOD NEWS. Having recently dropped chemotherapy, my continued health meant that the immunotherapy drugs were actually working on their own. And—even better—I was feeling great. No more thin hair, paper nails, and hobbling around on tender feet. I was almost myself again.

I was standing in the book exhibit at the American Academy of Religion visiting books like dear friends when I got an e-mail that said that I was now cleared as a candidate for a liver resection and that I would be meeting with the surgeon in 48 hours.  At one level, it was good news. These are precisely the kind of next steps that were not offered to me when I was hanging by a thread. But in every other way, I knew it was the beginning of a difficult experiment. I have an extremely rare form of cancer. How many people like me are out there? And what are they doing when faced with a painful decision?

One school of thought says to leave it alone. The drug is working so why take on a nasty surgery with a three-month recovery period? The other school of thought says: TAKE IT OUT NOW OR YOU’LL DIE. There is a lot of shouting in that second school of thought. I needed to make a choice. So I asked my medical team if they would find out what other major hospitals are doing. This became a long *cough* discussion. Of course, I said yes. I’m a researcher. I want information. They said, no. We will find out what is clinically best in 10 years when that research comes out. I was livid. But mostly I was exhausted. I don’t expect certainty, but I do think that hunches typically become common wisdom. So what are the hunches and best practices at the nation’s leading hospitals?

I realized that I needed to build a network of informed acquaintances at cancer centers around the country so that I could keep up to date on research as it develops, but there were a few holes in my plan. First, I don’t understand science. I mean, I understand how condensation works but it breaks quickly down after that. Second, I don’t know many doctors, let alone the leading GI immunotherapy experts. So I started a google doc that I called No Kate Left Behind, because I thought it was funny and the George W. tribute to its mediocrity sounded about right.

I e-mailed everyone I could think of. Do you know anyone in cancer research? At this hospital? Who knows this person? And then just when I had hit a wall, my Kates –Kate Moran, Kathryn Gin Lum, and Grace Katherine—started filling in the blanks for me and sending out e-mails. We developed a series of form e-mails so anyone could do it and then pass it on to me. I started having conversations with some amazing people at a couple big hospitals. There was no magic answer, but each person had a couple extra little details, though some were very dark. The drug like mine may stop working after a few years. This is a hard path.

One of the first things I learned last year is that, alone, I will fail. It is friends and family and loved ones and strangers who will keep me upright, who will give me those little connections and bits of encouragement and advice. I did No Kate Left Behind for about a month solid, and then now I do it in the evenings and on weekends. I still don’t have a lot of connections in place. In the meantime, I finished my memoir, wrote a cool chunk of my academic book, and splashed around at the pool a lot with my little elf. Cancer will take some things, but it can’t take it all.