I was reading some articles recently and came across some discussion about the difference between the titles of "advocate" versus "activist." It stuck out to me since I've often described myself as an advocate throughout my career as a lawyer and more recently, as a patient advocate. And yet, I'm realizing that advocate doesn't wholly … Continue reading Which Hat: Advocate or Activist?
Category: Advocacy
Caregivers
We talk a fair amount about the people in our lives who we look to for support/care in the online MBC support groups. Yes, there's a fair amount of kvetching about the stressors or disappointments because no relationship is perfect; at the same time, I see many more posts laced with love and concern for … Continue reading Caregivers
Heading into Chemo
Tomorrow I will start the IV chemo, Taxotere, along with the oral medication, Xeloda. This combination is designed to work together and gives my medical oncologist some flexibility. While I get the need to get ahead of the cancer cells that were not materially affected by my last line of treatment, the knowledge that I … Continue reading Heading into Chemo
Painful expectations
As most of you are aware, I ask a lot of questions in order to set my expectations whenever I start a new treatment or have a procedure and I highly recommend doing this. Whatever the answer, I set my expectations and prepare for whatever I’m told. That might mean how I schedule the days … Continue reading Painful expectations
When the invisible becomes visible and vice versa
I’ve written before about having an Invisible yet Dynamic Disability and some of the ramifications of that experience. The struggles of having to communicate the challenges of living with MBC is real and so many don’t get how I can look fine. Only a small handful of people understand how I must prepare for an … Continue reading When the invisible becomes visible and vice versa
Remembering friends lost in 2021
In March of 2020, my dear friend, Emily Garnett, was murdered by Stage IV Metastatic Breast Cancer (MBC). As I struggled to process my deep deep grief that also felt somehow outside the mainstream, a dear friend offered me a lifeline. Alyson Tischler responded to a comment I’d made on social media about my grief … Continue reading Remembering friends lost in 2021
What is wrong with people and other related questions
As 2022 begins and the world is once again beset with complications involving COVID-19, this time with the Omicron variant, I find myself pondering many things. At the forefront of my mind is the question, "What is wrong with people?" This one comes up a lot in varying levels of frustration. There are more people … Continue reading What is wrong with people and other related questions
I have a Confession
I've been really down lately. I think these feeling are a result of a combination of unexpected progression in October, precipitously rising tumor markers (highest since diagnosis over four (4) years ago), a new diagnosis for one of my boys, very low hemoglobin (I'm just about in the territory where infusions are routinely given), pretty … Continue reading I have a Confession
Following Up, San Antonio Breast Cancer Symposium 2021
It's been a few days since I got back from San Antonio and I've had a chance to think more about the aftermath of the week away. It's always a big ask of my husband and my parents for me to be gone in light of the child care requirements at home and I'm thankful … Continue reading Following Up, San Antonio Breast Cancer Symposium 2021
Unseen and Unheard, Part III
If you didn't have a chance to read my first two installments in this series, you can read Part I here and Part II here. I wasn't planning to include a third installment, but I got so many responses publicly and privately, that I thought I would include some additional items. One thing I love … Continue reading Unseen and Unheard, Part III
No Half Measures 