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