But no one told [me] the truth, which is, 'A couple of years later, you’re going to die.'
So it's officially October now, what do you want people to know about breast cancer?
"There is a misportrayal of the overall disease. My original diagnosis meant that I should have been fine. Most women who have a lower-stage cancer have no idea that they're at risk for metastatic breast cancer, which has [very little] research going towards it and no cure. It is certain death. This is the stuff that doesn’t get talked about. "There's a public lack of awareness. They think of breast cancer as done: 'We gave. There were pink ribbons and we gave and we're done. That's a curable disease. It's over.' So I find it amazing and shocking every day that the resources aren't there to actually do something about this, except for people who are out there who say, 'No, we're not gonna go quietly.'
"Yes, but we're not just about freaking you out. I started a hashtag called #Cancerland, which was kind of like The A-Team: if you could find us, we'll help you. We clean people's houses when they're at treatment and then we shout from the rooftops about making change in the disease. We try to improve the quality of living of women who are going through breast cancer and we don't believe anyone should go through it alone. "We also developed the #loveattack hashtag as a way to come in, tell you everything you need, throw you a party, make you feel beautiful, and just assure you that you're not alone. And when you get well enough, you'll have to come work with us.
It's about people knowing the realities and they’re not all pretty — [at least 100 people] die every day in this country from metastatic breast cancer. And they'll do it again tomorrow.
"[My friends and my husband] make me able to function and I cannot imagine doing this alone. I am committed to people not having to do it alone. There are many, many moments every single day where it is so hard to just choose to stay alive. I cannot stress that enough — moment-to-moment, you’re like, 'I can’t do this, I am too sick, I have been too sick for too long, I have been too beaten down, I am too tired, and it would just be easier to let go.' What stops you is your people. That means different things to each person. "For me, personally, I won't leave this Earth till I see the beginning of change. I won't see the end of change, but I need to see that beginning or my life meant nothing."
What should we be doing to change the conversation?
"First of all, we need to raise research money and to actually develop a top-down cure; a cure for breast cancer that could then be applied to everyone who has breast cancer, not just the lower-staged people. There's really only one organization in this country [focused solely on metastatic research], it's called Metavivor and it's run by women with metastatic breast cancer. "For every woman who's diagnosed with breast cancer, she needs someone from #Cancerland handy, or #Cancerland needs to be bigger, or other facilities need to adapt our approach. "And [finally, we need a different kind of awareness.] True awareness leads to research, which leads to cure, which leads to life. People often believe, because of the pink ribbons, that breast cancer has been dealt with. They say, 'Didn’t we do that already?' It's about people knowing the realities and they’re not all pretty — [at least 100 people] die every day in this country from metastatic breast cancer. And they'll do it again tomorrow. And they’ve been doing it for 40 years without a change in that number. That tells us we’re not getting any closer to finding any form of cure." This interview has been edited and condensed for clarity.