Day #2, San Antonio Breast Cancer Symposium, 2018

I’m still attempting to process all of the information I learned today.  The day started early at 7:00 a.m. and I am just finishing up for the night as I type, nearly 8:00 p.m.  It’s CST here in San Antonio, so that’s probably messing with my biological clock a bit.  I’m also feeling my “introverted-ness” after all of the networking and socializing all day.

There are some extremely bright and amazing people working on so very many aspects of breast cancer.  So much of today has astonished and impacted me as I sat through hours of presentations.  I had the opportunity to talk to a really empathetic woman whose job is to liaise between patients and FDA employees.  I met researchers who have spent their entire careers focused on breast cancer research; their entire careers, failing more than they have succeeded and yet getting up every day to work on it again.

A moment that affected me far more than I expected was when a researcher was presenting her findings and talked about how her study was a success because it improved the survival rate by ten (10) months.  TEN MONTHS.  While I do get that that is statistically significant, all I could think about was that it is not enough.   I had a moment where I was aghast that this person thought this was a success.  And then I set aside my emotions, reminded myself who her audience is and I calmed down.

The topic of needing more time was one of the subjects of our METup demonstration today–we want years, decades, not months.  In many of the pictures posted on the METup facebook page, I was talking, so the picture pinned to this blog post might be one of the only ones where I was doing what I was supposed to.

I unexpectedly ran into my own medical oncologist today.  Dr. Grace Wang at the Miami Cancer Institute is the very definition of a life-long learner.  She knows her stuff and she never stops researching and looking for solutions.  I’m sure she’s not always happy about the information I bombard her with regularly, but she tolerates my enthusiasm with graciousness that I likely don’t deserve.  She told me today that she spoke with some drug companies about trials that she thinks might be relevant for me. I honestly can’t wait to see her next to discuss specifics.  One, in particular, looks pretty amazing to me and was described by the researcher as “closing the door” on the possibility of the subtype of cancer that I have becoming resistant to the medication that is supposed to be killing it.  (https://www.deciphera.com/pipeline/rebastinib/).

My list of questions is growing and I know that I will be following up with many of the patient advocates and researchers I met today.  I met several other women who have young children and are dealing with metastatic disease.  This “tribe” of women I have been initiated into is varied and diverse and haunting and poignant.  I’ve never experienced the kinship created from a shared experience quite like this before.

Author: Abigail Johnston

I'm a daughter, a wife, a mother, and I've been living with Stage IV Metastatic Breast Cancer since March, 2017. All of the words I publish are my own.

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