Wednesday, June 8, 2011

Everything different

Turn up the lights in here baby, extra bright I want y'all to see this.  Turn up the lights in here baby, you know what I need, want you to see everything, want you to see all of the lights.

It shouldn't be, I suppose. Different, that is.

But it is. I almost wrote that I've been lying to myself, but that's not quite true, and not fair. After all, it was easy for me to ignore that I was facing an approximately 40% chance of failure, much, much higher odds of failure than I have ever dealt with in my life. After all, I could check a box for all the positive prognosticators: I had the mildest previous treatment possible, no radiation, it was a long time between remission and relapse. And things were working: my tumor shrunk, surgery removed it, just another few cycles and I would have minimal disease and I could get stem cell treatment with its high rates of success. This would suck beyond telling, but at the end, I'd be fine.

Then, a CT two weeks ago, meant to clear me for stem cell, showed that the disease in my liver had grown, and worse, spread to the lung. A PET scan a week later confirmed. Chemo hasn't done a damn thing to check the disease's growth since surgery.

So no stem cell transplant for now (they know it won't work with that much residual disease), and onto another chemo regimen.

And, oh yeah, the chances of my dying from this disease? Now greater than half. How much greater, exactly, I'm far too scared to ask. All my doctor offered was that this "didn't put [me] in any immediate danger," a less-comforting-than-it-was-probably-meant-to-be statement which doesn't incline one to ask further questions. But it's not the statistics that have me so rattled. It's the roadblock, the setback, the change of course. I've been spent hundreds of hours pouring over the charts of pediatric cancer survivors, and I struggle to recall more than a few cases where those survivors had their current treatment stop working. Survivors' treatment goes smoothly, like mine did the first time around.

I've never hated my knowledge--and my need for more of it--until now. My dad today told me he had looked up the use of these new drugs in Wilms, and my response was just a look and a "Why?" because he knew I had done the exact same thing and not exactly coped well with what I found. It's impossible to not get rattled by any Wilms relapse study, because they all repeat those charming survival statistics to stress the point that more research--their research--is needed. What gets to me most, though, is the use of the word "salvage" to describe chemotherapy regimens used after the first has failed. Not to out myself as an English major or anything, but the connotations of "salvage" don't exactly warm the heart. It's not a particularly hopeful word, one that seems to imply we're just trying to save pieces from a wreck.

And God how much I wish that doesn't turn out to be true. Every damn cell in my body is hoping, pleading that the treatment I received this week works, that I can move onto stem cell, that I get to grow up for real and be a doctor and have a family and travel the world and eat at the famous restaurants I can't afford right now and just fucking live.

Yet for the first time I find myself forced to confront the very real possibility that I might not. And everything is so very, very different. I'm not quite sure it will ever be the same again.


  1. I am proud of you for confronting this.... and writing about it which makes it real for you. Know that i am one of many praying for you and loving you.

  2. Katie, keeping you in my prayers. You are an inspiration. Sending you love from Hanover!

  3. I love you to pieces darling and your true strength is something not many people have. your always on my mind!

  4. I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there' and it will move.

    The Bible
    Matthew 17:20

    I'm praying for you daily. I have Faith that God will save you and make you whatever you want to be in your life.

  5. Katie. I love you. You are so strong and I admire you so much. You're in my thoughts always -Alanna

  6. Katie, I've known you since you were a baby (well actually before LOL)- you are fighter and come from a family of fighters- you'll beat this too!