Excuse the Dust

It’s been a number of months since I was last able to post – about which I’m both sorry and personally bummed. But hopefully I’m back! I travelled to Lisbon (and Paris) back in early November (a report about the conference and my poster are long past due) but my trip ended up being a bit of a mess. Thanks to treatment side effects, but the time I landed in Lisbon the soles of my feet were covered in layers of blisters and even a week later when I left Paris I could just barely hobble on the cobbles. It’s been a roller coaster ever since, so here’s a quick update:

I immediately went on a chemo break, and then resumed capecitabine at a lower dose. By Thanksgiving ascites kicked in. If you don’t know from “ascites” I pray you never do! It’s miserable! In a matter of a few days I managed to accrue FIVE liters of fluid in my abdomen. That’s TWELEVE pounds of fluid. I felt like I was 8 months pregnant, with no . That much fluid makes it difficult to sleep, results in back pain, and condenses your stomach to the point that you can’t eat. Logistics meant it took about a week to get it drained, by which time I was losing weight and inching my way toward dehydration. While managing that with weekly drainings, we made the decision that I would go back on traditional chemo to try to quickly knock out whatever was causing the ascites. So the next weeks were filled with a CT scan, a liver biopsy, a port placement, and a complete shift in my cancer. Yup, all that talk about how important follow-up biopsies are? THEY MATTER! I am now HR-/Her2+; a complete reversal that has me on a completely new treatment; a treatment that wasn’t available to me in October.

To make matters more complicated, the week of my first chemo I also contracted a c diff infection. You don’t want to know from this either! Miserable sleepless nights spent on the bathroom floor and days stuck at home, which then lead to more serious dehydration – from which I’m starting to recover at last. To borrow the words Miracle Max, I felt mostly dead.

Thankfully that’s over. Cycle two, comparatively, was a breeze. Exactly what I expected from chemo. I’m slowly digging back out and feeling really good again! So look for some upcoming posts!

CALIFORNIA PEEPS: One of the roles I am most honored to play in advocacy is serving the California Breast Cancer Research Program. In addition to allocating state research funds, the CBCRP advocates for breast cancer prevention and improved treatments. We are presenting a truly innovative and exciting conference that will bring together stake holders from all sides to get down to the business of removing silos and building cross-disciplinary teams to tackle the many challenges related to breast cancer. The conference is free to attend and I hope advocates, especially those in Northern California, will take this opportunity to engage! For more information, check out: http://www.cbcrp.org/about/symposium/index.html

22 Comments (+add yours?)

  1. The Accidental Amazon
    Feb 15, 2016 @ 20:46:34

    OMG, Lori! What a shitastic time you’ve been having!! It should be illegal to be afflicted with both ascites and c-diff. Good gawd… How weird that your cancer flipped into a different type. I’m so glad you are literally back on your feet now. Long may it continue. Good luck with the conference. xoxo, Kathi


    • Lori
      Feb 21, 2016 @ 11:04:52

      Thank Kathi! I’m very, very glad to have it behind me! And I couldn’t agree more about the ascites & C diff – what a combo! XO


  2. Susan
    Feb 16, 2016 @ 00:38:16

    You’ve really been through a lot Lori. So sorry about the nasty side effects.. The change in her2 to plus sounds promising . Sending you tons of love and light. ❤️🙏🏼


  3. 3laine 3liane
    Feb 16, 2016 @ 01:27:12

    Oh wow! A roller coaster of the first magnitude! So sorry you’re going through all of this, hope you are feeling better, and that the new protocols help. ((((❤️))))


  4. Sally Rubiner
    Feb 16, 2016 @ 02:17:13

    See you this week or next, I hope. Aunt S.


  5. Jayson
    Feb 16, 2016 @ 07:03:53

    Oh no. Sorry you were having such a rough period. Thankful you’re doing better. Appreciate that you were so helpful to me when I was so nervous about my wife’s BC.


  6. Anita Boxer
    Feb 16, 2016 @ 14:15:19

    Lori, this is kind of an unabashed admiration letter. Your hubby (bless him!) does not share much about what’s going on with you. This is a much better way. Anyway, just know that someone out there admires you beyond expression. You are an incredible spokesperson and s phenomenal human being! (gush! gush!) Can’t help myself. Just had to tell you in case you doubt the good you’re doing or that your message is getting out. So glad you’re feeling better, Stay that way!


    • Lori
      Feb 16, 2016 @ 20:52:27

      You are so kind, Anita. I truly feel blessed that I can share my experiences with and help others. I always strive to find the good in life, and hope others feel understood and supported through my sharing. Cancer sucks, but my life is truly blessed by those I share it with! XOXO


  7. Denise Archuleta
    Feb 16, 2016 @ 20:32:47

    That ascites is very painful, I remember. Thank you for all you do! God Bless you.


    • Lori
      Feb 16, 2016 @ 20:53:21

      It really is so much worse than it seems it would be, isn’t it??? I’m glad it’s behind you as well! Thanks for stopping by!


  8. thesmallc
    Feb 21, 2016 @ 10:24:05

    Welcome back Lori! I had just started following you last year and have often checked for updates. I am sorry about those unwelcome new developments you had to deal with. But I am glad things have improved for you. Stay well.


    • Lori
      Feb 21, 2016 @ 11:06:13

      Thanks! I’m really hoping I can be more consistent for a while – it’s great to feel up to writing again. Thanks for following!!


  9. Cathy
    Feb 21, 2016 @ 11:02:25

    I’m super-fortunate to not be metastatic, but I had c diff 3 times during my treatment, once spending a week in the hospital with it. You have my complete sympathy. Her2+ is indeed good news! I hope everything continues to improve.


  10. Eileen@womaninthehat
    Feb 22, 2016 @ 19:33:07

    Wow, you’ve really been through it. So glad you’re feeling better.


  11. nancyspoint
    Feb 29, 2016 @ 12:01:45

    Hi Lori,
    I am in catching up mode and oh my goodness, I am sorry to hear about all you’ve been dealing with. And it’s bad enough to deal with stuff like that when you are in the comfort of your own home, but when traveling, yikes. Anyway, welcome back. You are such an amazing advocate. When you get quiet, we do miss you. But totally understand too. Thank you for all you do. xx


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