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.

18 thoughts on “No Kate Left Behind

    1. Philip Barr

      I don’t want to burden you with yet another thing to read, but these past two months have been long wondering how you were doing. Thanks for the update. I continue to pray for you in the decisions that you will have to make.

      Reply
  1. Deanna Thompson

    So good to know about the No Kate Left Behind document and the time with the little elf. Praying for all of Kate, every day. Sending much love and strength and courage your way as you step into this new year–

    Reply
  2. Elly Tucker

    I love reading your updates, Kate. You are an amazing writer and communicate so many things so beautifully.
    I have a friend who is up at Johns Hopkins, dealing with another rare cancer (of the appendix). I don’t know of any relationship with liver cancer, but thought I would mention her treatment is HIPEC. I am not sure if that is helpful or not, but I decided to err on the side of sharing with you. You can discard if it is not what you need now.
    You are a warm and intelligent woman, and mom. I know this is not fair. But you are incredible.

    Reply
  3. Philip Barr

    Please check out this article which is available online at the Texas Monthly webpage, archives.
    Texas Monthly, November 2016
    Can This Man Cure Cancer?, by Eric Benson
    It profiles the quirky researcher Dr. Jim Allison of MD Anderson Cancer Center, Houston and his work in immunology therapy. I found it to be a very exciting article.

    Reply
  4. Mara

    Please let my know if you need any more assstance with spread sheets, wonderful kid photo admiring, and/or listening as you play out various flow chart scenarios., I’ll be your C’ate’ie in waiting

    Reply
  5. Moira

    I’m one of thousands of scientists who are trying to be one of those bridge people you talked about in your NPR interview. You are one of my bridges giving this work meaning…and reminding me that a path with God is the only one I need, and with humor and humanity. Thank you Kate.

    Reply
  6. Carole Freeman

    I do not know a cancer expert in your kind of cancer but I know the One who does. I love reading what you write & I really do love praying for you. Because of that I feel close to you- like a close friend even though I’ve never met you. You are a very special girl & I’m glad you’re in my life.

    Reply
  7. Randy Johns

    The sharing of your life always causes me to re-evaluate and refocus mine. Always praying for you, friend!

    Reply
  8. Stephanie

    I was diagnosed with a rare cancer last January and found your article along the way of reading everything about cancer I could find. I am a professor as well. I have a child who I want/need/want to see grow up too. I get you. I also get the humor because my humor keeps me going. Thanks for your blog.

    Reply
  9. Denise Howard

    Hello Kate,
    I stumbled across your blog post about your book and your cancer diagnosis. That was months ago and I haven’t forgotten about you. I was so happy to hear that your scans were good! Dealing with cancer while trying to raise your precious baby boy sounds like the hardest and most gut wrenching thing to go through. My prayers have been for you and your family. I am a Christian, but not someone who thinks everything happens for a reason or even someone who thinks more faith will heal us. In fact, my best friend lost her mom to cancer two weeks after she herself was diagnosed with stage 4 breast cancer with mets to her liver. but she is now 5 years out and feeling very healthy. She thought running would be out of the question, but is now doing it everyday. She has struggled with well meaning people who have said very hurtful pseudo religious comfort phrases as well. But she and her mother are pillars of light and strength to me. They have had their own God journeys and realizing that God isn’t a fairy godmother waiting to answer our requests and wishes if only we would believe or try harder. There is so much to God, so many layers that we will never be bored searching Him out. But, he is searching you and I out too. My prayer for you is for health, happiness and the everlasting joy from Jesus Christ and God our father that will carry you through this excruciatingly tough time. Thank you for your sarcasm, cynism, for being real, and open to what is beyond the naked eye. You are a great writer and you sound like a wonderful mother. good luck!

    Reply
  10. Amy Huacani

    You have been in my prayers. We haven’t met but I am a spiritual formation group leader at DDS which is how I was invited to pray for you. It was the highlight of my time watching the Broadway Revue tonight to see you there on stage singing and it was a gentle reminder to let my prayers rise up. Your courage inspires us all (and thank you for speaking out on Trump). I look forward to reading your memoir.

    Reply
  11. Pingback: No Kate Left Behind – Kate Bowler – GI Endoscopy Practice

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