When were you first diagnosed with Breast Cancer?
Tuesday, February 4, 2002, after the worst weekend of my life. I had my biopsy on a Thursday and waited 5 LONG days to find out. I later discovered (while reading my chart) that the doctor knew that Friday but never told me. He was fired.
When were you diagnosed with Metastatic Breast Cancer?
Interesting that this date is less memorable – late August 2011, just about 2 months before my son’s bar mitzvah.
What were your thoughts upon hearing the metastatic diagnosis? Was your perception correct? What has changed since then?
Honestly – relief. I had spent nearly 2 years watching a tumor marker rise, with scan after scan showing nothing. Without corroborating evidence there was nothing to do but wait. So when it finally showed up I was relieved and ready to get back into treatment.
How did you first learn about METAvivor?
NO IDEA! It’s always been there. I think I first bumped into CJ on the #bcsm twitter chat, long before I was diagnosed with mets.
When did you get involved working with METAvivor?
CJ and I met face to face at the NBCC Conference in 2011, I think. I started getting involved then, and became a board member about a year later.
How much progress do you think has been made for metastatic breast cancer research?
One of the biggest challenges is defining how we measure progress, and on what front. Women are living longer – this is good. There are some new-ish and emerging classes of drugs – also good. But as we move into genomic sequencing for patients, we’re finding how much more there is to know. We can test for genomic mutations, but in so many instances we have no idea what to do with the information. We aren’t funding MBC research at any greater a rate than we had been – still below a paltry 5%. And the system is pathetically cumbersome, with drugs taking a decade or more to get to market, despite our average life expectancy of about 2 years.
What's the one thing about metastatic breast cancer that you feel the public should be more aware of?
That you die from it.
I know a breast cancer diagnosis strikes fear in the heart of anyone who confronts it. It get it. I’ve been there. But early stage disease doesn’t kill. Period. People need to understand that metastatic breast cancer kills, and that one in three patients – including those who believe they were “cured” from early stage treatment – get it. Death, death by disease, is never easy to face. But sweeping MBC under the pink carpet isn’t going to change the numbers. We’re still losing 40,000 Americans a year, while the pink party continue. It’s shameful.
What was the hardest treatment you've been through to date? The easiest?
Probably my chemo – FEC100. It was a stronger dose than they are using now, I think, and it knocked my on my ass. I had a 3-year-old to keep up with at the time so the worst of it was the exhaustion. It also left me feeling like a failing, dying mother. (See comments about early stage treatment above…I drank the Kool-Aid too!)
Easiest? I guess my time on Tamoxifen. It left me hormonal and spacy, but it interfered less with daily life and easy living than the others.
Do you have any special tips or tricks that worked for you in combating any side effects of any form of breast cancer treatment?
Talk to your doctor! There isn’t a side effect too silly to address, and you don’t get points for suffering in silence. If your doc’s solution isn’t working, seek others. Don’t be afraid of complementary medicine. Things like acupuncture and herbal remedies have been tested in human subjects for centuries. But check with your doctor first!
Oh, and peppermint oil for hot flashes. Just a few drops on the back of your neck – it’s a miracle drug. It cools me off within a minute or two, lasts about an hour, and when I’m over-zealous in my use it leaves me so cold I need to put on a sweater.
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Thank you, Lori, so very much for taking the time to answer these questions.
Lori can be found at her blog, Regrounding, and on Twitter.
Watch her interview on Lifetime's The Balancing Act.
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