THE BLOG
08/04/2014 12:11 pm ET Updated Oct 04, 2014

The Not-So-Pink Truth About the World of Stage IV

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When we close our eyes and think of breast cancer, we often see pink walks, pink boxing gloves (one of my favorite trademarks), inspirational head shaves, fun songs in the O.R. room or images of mastectomies and reconstruction. I am by no means knocking these things -- they are all celebrations of conquering this horrible disease and symbols of empowerment.

I myself am documenting my entire journey through breast cancer, and I have done many of the things listed above. But as I battle the disease this time, when I close my eyes, I see things differently. I still see beautiful women battling this disease with dignity and strength unlike any I have ever seen, but now, I see other images, too. I see an amazing mother who loves her family so much, whose spine is literally breaking due to the tumors throughout it, but still gets up every single day and fights through the pain. I see women afraid to make plans for next year out of fear that they won't be here. I see children crying as they are watching this disease rip their mommies from their arms. I see daddies in their own grief left to pick up the pieces. I see a woman putting on her jeans one leg at a time, like you and I, but her femur bone snaps and she hears the break because of another tumor. The pain! I see marriages falling apart because it's just "too much." I see women having to make decisions between electricity and medications. I see a woman sitting in front of her oncologist after finding a new lump. The oncologist says, I'm sorry, you are now Stage IV. Inoperable. When I close my eyes, how differently I see things.

We have a world out there of Stage IV Heroes. They are fighting every day to survive against all odds! Not only the physical pain that people with Stage IV cancer face day in and day out, but the extreme emotional and mental toll this disease has on you. It doesn't only affect the person who is carrying the disease; it affects all of our loved ones. I never really knew this world existed until I became a part of it. The tears I cry for these beautiful woman and precious families. Now, being on the other side of this pink battle, the other thing I see often is women being diagnosed with Stage IV cancer. These aren't women in their 60s; these are wives, mothers, daughters, sisters and best friends under 40! Something has to change. We see the 'survivors' at these walks with cute pink boas and pink tulle skirts celebrating life, and how proud I am of them. But, all of this pink gives a false sense that we are winning this battle against breast cancer.

What we don't see is our triple negative breast cancer sister in her early 30s who has just left her husband a widow and her young children motherless. I had a false sense, too, not too long ago, that we were winning this "war" against breast cancer. How naive I was. The way we are fighting has to change.

Nothing is going to change until we demand change! I see the future and it is all of us demanding personalized care along with integrative care. Maybe then we will stop burying someone's mother, wife, daughter and friend.