The last 5 years I have been living my life straddling a fence. I fight every day to stay balanced. Steady. On top and moving forward trying to live my life while also making some kind of difference.
There are days when I don’t feel well or I have side effects from treatments. I struggle to keep my balance. Then there are days when news of a another life stolen from this insidious disease makes it way through friends and social media like a sick game of telephone. Its all I can do not to fall flat on my ass onto the ground.
Last year, singer/songwriter P!nk released a song: “Wild Hearts Can’t Be Broken”. I’m sure she had her own reasons for writing this song. Clearly, it’s not because she knows me or understands what a day in the life of any Metastatic Breast Cancer advocate is like, however, that is exactly what this song is to me.
“I will have to die for this I fear
There’s rage and terror and there’s sickness here
I fight because I have to”
The American Cancer Society estimates that in 2018, 41,400 men & women will die from MBC. That number hasn’t decreased in over 30 years. But that’s not widely talked about.
The only way to see that number move in the other direction is to actively fund meaningful research that will focus on Metastatic disease and drugs that offer longer progression free survival.
“There’s not enough rope to tie me down
There’s not enough tape to shut this mouth
The stones you throw can make me bleed
But I won’t stop until we’re free
Wild hearts can’t be broken
No, wild hearts can’t be broken”
Over the past 5 years, I have held several fundraisers benefitting the only two organizations that exclusively fund metastaic breast cancer research. I have traveled to Washington D.C. three times to help organize and participate in public demonstrations to raise awareness. I’ve spoken to lawmakers and I am vocal on a daily basis on social media. If it’s going to make any kind of impact, I’ll do it. If it could potentially save just ONE life – ONE. I’m there.
You bet there isn’t enough rope, chains or straps to tie me down. You’ll never find any tape or glue to shut my mouth. (Ask my family – they’ll vouch for the mouth).
Sure, there will be people that may say “why bother, it’s too late” or “Go out and enjoy the time you have left; stop focusing on ‘cancer'” To those people my message is simple: I’m not just doing this for me. I’m doing this because I need to make sure my future grandchildren won’t ever have to worry about this.
Wild hearts can’t be broken, but every time another friend dies, tiny cacks appear. Those cracks are there to remind me and the rest of us that tirelessly advocate that it’s essential and to keep plugging along.
This song is my battle cry. It’s what motivates me when my headspace says I can’t. It’s what I listen to after learning of another death.
I owe P!nk a debt of gratitude for writing what feels like an anthem for all those living with and madvocating for a terminal diagnosis.
Should anyone happen to run into her, please pass that message on to her.
Your words are powerful. My daughter fought breast cancer for 8 yrs. I fought with her and I feel like we fought against everyone. Nobody understood what she went through and what I went through with her. 2 years no since her death, I am still fighting trying to get even my family to understand what it meant to see her go through mbc. They used to say she was “playing me” and exaggerating. They now tell me to get over her. No. I’m absolutely traumatized by her fight, my loss and the future for my clueless daughters. Now I have to try to navigate preventative care for my daughters daughter. I love what you wrote. You are carrying on my daughters voice. Thank you.
I am deeply sorry for the loss of your daughter. While I cannot understand what it’s like to lose a child and non of my experiences could ever come close in comparison, I have witnessed some of my dearest friends go thru treatment after treatment, suffer and die painful deaths. It sucks so much when I lose 2 or 5 friends in a week or a single day. I am equally sorry and honestly angry that instead of offering support during your daughters illness and to you after when you needed them the most.
If you would like any information on virtual support groups for caregivers or anything else, please do let me know and I will do my best to assist you.
Also, thank you for the kind words. Much appreciated.
Susan
I shared your link with Pink… 😉
Aw, you’re so sweet. Thank you!
You and your fellow MBC advocates inspire me daily. Thanks for all you do. This was beautiful
We don’t always get to choose the flag that life asks us to fly. But once it’s handed to us, we must fiercely fly it, moving it forward with each piece of ground we gain until we reach the final hill where we can place it to signify victory. For those who don’t understand that, I think Teddy Roosevelt said it best: “It is not the critic who counts; not the (woman) who points out how the strong (woman) stumbles, or where the doer of deeds could have done them better. The credit belongs to the (woman) who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends herself in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if she fails, at least fails while daring greatly, so that her place shall never be with those cold and timid souls who neither know victory nor defeat.”
Great post sister! Glad to be in the fight with you.
You perfectly summed up all of us doing what we do, whatever that is, great or small for the sum of us all. Brava! 💕
That powerful song has left me in tears. Indeed an anthem for all you do and for all of us wanting to live a longer life.
So glad you liked the song. I hope you listen to it often and that it reminds you we are all in it together. 💕