That's the beast of metastatic breast cancer. We're told over and over that we don't look sick and we hear questions like, "I don't see how you can be so sick and yet have so much energy!"
If we are on treatments that don't cause hair loss, people assume, "Oh, it's not that serious. She'll be okay."
If we have a crisis and bounce back, then people continue with those assumptions. "Oh, that was just a minor cold. She's okay."
If we start a new, harsher regime and deal with side effects, we're told, "Oh, don't worry! This will be the one that kicks cancer's ass to the curb!"
We're told to never give up hope ... that we can beat this.
But no, we can't.
Some women are exceptional responders and reach no-evidence-of-disease (NED) early on in their metastatic diagnosis. I love reading those stories! I love knowing what type of mets they have and what type of treatment they received. While I have never been NED, I hold out hope that my liver can be NED or that my bones can show healing rather than disease progression. However, I do recognize, it's more a matter of "luck" (I don't really like that word, but I don't know what other word to use) in that some people reach NED and others don't.
Some people don't respond to treatments at all and the cancer relentlessly marches through their body.
Julie was one of those women. Diagnosed with early stage disease in 2009, she had a double mastectomy, had chemotherapy and took her Tamoxifen daily. In January 2014, she discovered it was back in her liver. She underwent almost every chemo known to the breast cancer world and the cancer in her liver would wax and wane accordingly, but never completely went away.
And it kept spreading elsewhere. Bits in bones, bits in lungs, build up of pleural effusion.
Julie kept it real. She admitted when she was exhausted and she cursed when she was mad. And she was mad ... a lot! The mom of six children ranging from teens to adulthood and the proud mom of a much loved grandson, Julie was furious that this disease was back.
In spite of her occasional "keep positive" posts and the occasional "never give up" themes, Julie knew this disease would kill her. When she found out that it had spread once again, she considered stopping all treatments, but was willing to try one more. She was so very tired of it all, but for the sake of her family, she kept on. She lived to love and she loved to live. She was protective of her family and she started a secret group in order to have a safe place to privately vent.
On Friday, December 11, Julie posted that her latest scans did not have good news in that the disease had spread further in her liver and lungs, as well as moved into her skin. Her last words to us in that group were in that post, " ... thanks love you all XOXOXOXO."
On the 15th, her husband and daughter announced that Julie's liver had failed and that it was a matter of days before she left us. This morning, December 17, 2015, less than two years after her metastatic diagnosis, Julie died.
There's no softening the blow. There's no platitude that will make any of us, especially those who knew Julie personally and those who connected with her in a special way, feel any better.
There's no amount of pink that can whitewash the reality ... that another young woman (early 50s) is gone due to a disease that, in spite of multitudes of walks, runs and relays, still has no cure. She is included in the survival statistics for her early stage because she lived five years post that diagnosis ... how wrong is that?
We desperately need change in how breast cancer is tabulated. We desperately need change in how the public perceives this disease. I don't have any problems with living with a positive attitude (I'm a natural optimist), but we need people to definitively know:
THERE IS NO CURE FOR METASTATIC BREAST CANCER!!!!!
Only research will change that. Much needed research that needs greater funding without being watered down from charitable organizations who are raking in the money.
Julie didn't need another pink ribbon. She didn't need another piece of tchotchkie declaring her to be a survivor. She didn't need another inspirational poster on her Facebook wall telling her what a brave woman she was. She needed a cure.
She was doing so well!
And then she wasn't.
And then she died.
I'm so sorry Julie that we let you down. You deserved more. Godspeed.