Saturday, January 18, 2014

You're going to hear me roar

I used to bite my tongue and hold my breath
Scared to rock the boat and make a mess
So I sat quietly, agreed politely

I'm a fairly easy-going person.  I'm a Libra. I consider myself generally balanced. I don't go off the deep end too often. I don't feel entitled to force my opinions on others through bullying tactics or by shear force of will.

So after I first joined an online support group, I tip-toed lightly around others unsure of how it should work. As time went by I found a voice that was a balance of my own opinions, politely getting along and saying anything I thought would make someone feel better. It just broke my heart to hear another woman in distress, gripped with fear and worry so I tried to be a cheerleader. I tried to help boost the morale of others, even when in my heart I feared for them.

I guess that I forgot I had a choice
I let you push me past the breaking point
I stood for nothing, so I fell for everything

Of course that all changed when I was kicked out of that group by a mean-spirited admin whose true goal is to earn a living off of the backs and hearts of women diagnosed with this disease. (If you'd like to read about that you'll have to read this post) I had become interested in finding real ways to improve our prognosis and I was being ostracized from the very women I felt most connected to.  Women I needed at that very moment. (I was five days post MX after my second DX)

You held me down, but I got up (HEY!)
Already brushing off the dust

Fortunately I understood that the women in the group were not being represented by the admin. And, I was not alone as others had been kicked to the curb alongside me. So, we dusted ourselves off and began a new project aimed at getting metaplastic breast cancer the notice it deserves. We built a website, started a facebook group, a facebook page, a google + page,  a youtube channel, hit twitter and created a ScoopIt page as well. We began to reach out into the medical community to improve communication and understanding between our group and doctors and researchers. I felt like I was inching along, making some headway in my personal goals.

You hear my voice, you hear that sound
Like thunder gonna shake the ground

A few weeks ago in a BCSM chat the topic was what  "three words" would you use for your 2014 mantra? I've been thinking about it a lot. This is the year to really press forward. Last year was baby steps. I didn't even know if I wanted to be an activist but after all that we have accomplished, I'm ready. My words are:

Action: I'm going to be actively working on the site (as always) but more than that I am going to actively work on getting metaplastic breast cancer noticed in the medical and breast cancer communities. I'm going to be reaching out to doctors and researchers and asking for help. I'm going to be offering support to both patients and caregivers. I am going to continue to build that community so that I can bring a larger group of patients to the doorsteps of researchers and in turn bring the expertise of the research community to the women affected by MpBC.

Commitment: This isn't my day job but it's certainly my night job. I won't be discouraged when doctors don't respond. I won't be discouraged when I can't reach every patient. I'll be sad at every lost life and swear each time that I'll keep writing those letters, reading those studies and supporting the women who need it whenever I find them. One day, I may join a bowling team, but that day is not today. Today, I'm working for the women like me who have fought metaplastic breast cancer.

Determination: I am determined to make a difference. I expect challenges. I expect set backs. I expect to persevere. I expect to ROAR!

I got the eye of the tiger, a fighter, dancing through the fire
'Cause I am a champion and you’re gonna hear me roar

Roar- Katy Perry

I went from zero, to my own hero

P.S. Thanks to that Admin who helped me find my voice.... it's a loud one!