NaBloPoMo 3: Now What?

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The “on one foot” version for anyone new to my blog: In February I will be an 11-year breast cancer survivor. Three years ago this month my CA 15.3 tumor marker (a controversial blood test used as part of my follow-up studies) started rising. And just over a year ago my cancer showed up in my bone marrow. I now have incurable, metastatic breast cancer.

I’ve made my peace with MBC, at least for now. And in fact, I’m one of the profoundly lucky ones – we caught it “early,” before it had done significant bone damage or spread to any other organs. I am back on tamoxifen, as well as injections of Xgeva and Lupron, and while I’m not lovin’ them I DO know it could be much, much worse! And most of all, it seems to be doing the trick.

That call three years ago, the Monday of Thanksgiving, my marker was at 79. (Normal is 29). Over the next two years, while we opted for “watchful waiting” it rose to an astounding 491. Today I got a call from my doctor’s office and we are finally back in double digits: 88.

I am thrilled. Really! The pace has slowed down considerably in the last few months and it’s had me secretly worried. Down is good, but dropped a few points a month wasn’t what I wanted. So 13 points has me very happy!

I was texting out the good news when it hit me: I could be metastatic AND NED (no evidence of disease). I don’t even know what that looks like.

Treatment, or no treatment? More scans to be sure? And will I sleep at night?

NED is a wonderful problem to have, no doubt. But then it’s back to the “you should be so happy” edicts from those who don’t understand that NED is just a holding pen.

11 Comments (+add yours?)

  1. The Savvy Sister
    Nov 03, 2012 @ 11:50:07

    Lori, this is great news! I don’t think there is anyone that is a “NED” that doesn’t realize we’re on the shore of the rising tides, and at any moment, the waves could touch us. I wish you a long happy life “in the pen”.


  2. Susan
    Nov 03, 2012 @ 12:41:24

    Holding plan or not Lori, enjoy it! I am so happy for you. I also know how hard it’s been with so much anti-estrogen which is no picnic! On top of that all the scaniety and everything. You deserve this and just let yourself be happy! Congratulations my fearless friend. Hugs and XoXoXo-Susan


  3. Jan Baird Hasak
    Nov 03, 2012 @ 13:40:11

    I also have incurable, metastatic breast cancer, so I look to you as a beacon of hope. I was just diagnosed yesterday. Keep up your blog. It keeps me going. xo


    • Lori
      Nov 03, 2012 @ 13:50:42

      Oh Jan….I am so, so very sorry. My heart and prayers are with you as you figure out what is next for you. I will be here as your #fearlessfriend for anything you need. Much love…XOX

      Sent from my iPad


  4. Tracy
    Nov 03, 2012 @ 14:04:34

    I’m in treatment now and HER2+ so face the prospect of metastatic disease (so few HER2+ women seem to get a reprieve). So I’m enormously pleased for you and whatever NED and metastatic means, I hope the holding pattern stays indefinitely.


  5. Vicki Tashman
    Nov 03, 2012 @ 17:05:08

    I’m glad to hear the good news Lori! You are an inspiration to all!


  6. Val Katz
    Nov 03, 2012 @ 21:01:26

    So pleased you get to do “the HAPPY DANCE”…good news indeed! Keep up the good fight…you truly are an inspiration to all of us!


  7. Lori
    Nov 03, 2012 @ 21:18:50

    I am so touched by everyone’s comments…THANK YOU! I’m not NED yet, just anticipating my arrival! Much love and healing….Lori


  8. Acacia
    Nov 04, 2012 @ 13:18:03

    Lori, NED is so freaking brilliant! I also think it’s cool that you call yourself a survivor, even after the mets were found. I don’t seem to be able to do that.


    • Lori
      Nov 04, 2012 @ 13:47:07

      THANK YOU! Not quite there yet, but I’m working my way toward it!

      As for being a survivor, no where is it written WHAT you have to survive – chemo, surgery, radiation, tamoxifen. For my money, if you were still standing after the diagnosis, you’re in!



  9. mainelyhopeful
    Nov 04, 2012 @ 15:15:41



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