San Antonio & Setting Goals

I have so many thoughts swirling around. It’s been a minute since I’ve written. Every time I’ve tried to carve out time, something else takes my attention.

When I started writing this I was on a plane. In the middle seat. I loathe the middle seat. I have claustrophobia issues. I was on my way home from a week in San Antonio; attending The San Antonio Breast Cancer Symposium. I had been trying to get there for 2 years. This conference is the largest conference dedicated to all things Breast Cancer. Researchers and Oncologists from 90 countries present results of trials, studies, data they’ve worked and collaborated on. You name it – they were probably talking about it. It’s basically a “who’s who” in the Breast Cancer space. Five days – from 7am until 10pm.

This being my first year at SABCS, it was also my first time representing METUP in my official capacity as President at a conference. METUP has been going to this conference for the last three years. Each year included a silent protest where signs are held outside the most attended session of the conference which happens to be where the Komen Research Award winners are presenting. This year would be no different.

The signs always conveyed a clear and concise message directed at researchers. Previous messages were: “Cancer Doesn’t Discriminate Neither Should You” “Help Us Help You” “Metastatic Research Now” “Silence = Death”

This year we had two messages. Our signs had a message on both sides: “We Need Years, Not Months” “Do What’s Right, Not What’s Easy”

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METUP Protest – SABCS18

We received so much positive reinforcement & feedback. We even had one person join in and hold a sign with us. Afterwards, I was told by one person they disagreed in our choice of timing for our protest. That’s why it’s called a protest. History has shown, however, that change doesn’t come from waiting for it to happen. Change occurs when you take action to make it so. It’s especially important when my life is on the line – even yours.

I’m extremely proud of what METUP has accomplished since I’ve come back to the organization. We held our 4th and the most successful Die-In in Washington D. C. this past October. We’ve added a Diversity Coordinator & a Compliance Coordinator to our team and we closed the year with a protest that grabbed the attention of some impressive people in the medical community.

Aside from all the fascinating information learned from brilliant individuals from all over the globe, it’s the best opportunity to meet “IRL” and catch up with the friends you’ve made on social media platforms – most notably Twitter. (#BCSM shout out!)

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#BCSM Live

Many great connections were made. Constructive dialogue took place all week; with the anticipation of fostering new ideas into action.

As a new advocate to the symposium and not a grant recipient from the Alamo Foundation, there was a glaring absence in access to information. If you want to attend general sessions, exhibits or posters – all of that information is clearly available either online or in a downloadable app. What’s not available, is information for sessions designed specifically for patient advocates, “hot topics” or panels. Invitations that come via email don’t go to all patient advocates. It all ends up being conveyed by word of mouth once we’re there. IF we’re lucky.

So, San Antonio Breast Cancer Symposium – if you’re reading this, I have some suggestions to make the conference more “Patient Advocate Friendly”:

  1.  Update the Advocate button on your app with actual information about conference events instead of the Advocate webpage which is useless.

  2.  Have a room for Patient Advocates where we can take a breather if we need to. These are long days. Metastatic Patients, Patients out of treatment get tired and we don’t all stay close by. Finding a place to sit is very challenging. This would be so helpful. Especially if the shuttle busses aren’t going to run all day.

  3.  If you’re going to send email invites that are for ALL patient advocates – send them to everyone. Don’t send them to some and ask them to finish your job by “passing them on” it’s not always going to happen. People will feel left out.

  4.  Currently, there are Hot Topic dinner meetings, which is great. Perhaps, add Lunch & Learn topics (in that Advocacy Lounge I suggested in #2) for those that just can’t stay until 5/6pm.

Just my two and half cents. Think about it.

It was extremely bittersweet at the end of the week. Saying goodbye to friends always sucks after spending so much meaningful time together. It’s much harder when you know the following year, not everyone will be returning and (not to be a wet blanket) it could very well be me. With that in mind, your friends hug you a little harder and a little longer and you both cry a little; while insisting each of you will be back to do the whole thing again next year. Hopefully. Maybe.

METUP has some lofty goals for 2019 that will be sure to raise eyebrows and get some attention but with our team, a growing base of volunteers and a lot of fundraising, nothing is impossible.

“You may never know what results come of your actions, but if you do nothing, there will be no results.”
― Mahatma Gandhi

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I Still Have Work To Do

Five years ago this August, I was told I had 2-3 years left to live. Five years ago I wasn’t ready to die. Today, I’m still not ready, but it’s not up to me; so until that day – I have work to do.

When I look back over these years since cancer invited itself into my life, it’s a tapestry of faces, friendships, events, gatherings, meetings, and experiences that literally takes my breath away. I have a very difficult time reconciling the fact that none of these things would have happened and I never would have met the people I’ve met had it not been for cancer. I didn’t want it then and I sure as shit don’t want it now. But I can’t have one without the other. If there is a God or higher power, he or she has a really twisted sense of humor.

In the world of cancer, especially early stage Breast cancer, doctors tell patients that once 5 years “no evidence of disease” is reached, you’re allowed to exhale. When you have Metastatic disease and you’ve lived 5 years, you’re basically living on borrowed time. I am extremely fortunate that I have had a good response to the treatment I’m currently on, however, my eyes are wide open and I am fully aware that at anytime this could change. I am now racing to beat a clock that’s ticking down to an unknown time that will only be revealed in the moments before the big hand strikes twelve.

I have been a vocal advocate for Metastatic Breast Cancer for damn near all of these 5 years. I’ve shouted on my own. I’ve lent my voice to others when needed. I’ve been part of new projects. I’ve helped launch grassroots activist organizations.

Through all of these things, I’ve met, worked with and learned from the most amazing people. Many of whom have since died. Each person has left a footprint on my heart. One individual in particular not only left a footprint but she also took a chunk of it with her when she left us.

Beth Caldwell is that person.

In the months before Beth died, we spoke frequently about how we needed to keep advocacy and activism at the forefront. We were making plans to meet at the last big conference of the year the San Antonio Breast Cancer Symposium and discuss a plan to keep moving forward. Sadly, that meeting never happened.

As most people did, I respected the hell out of Beth. I still do and always will. More importantly, we were on the same page of the same shitty book when it came to what we felt needed to happen. We needed to shake shit up, make noise, storm the gates and take no prisoners if we wanted people to hear us and help save us. Enough was fucking enough. Lives are at stake – our lives. When she asked me to help get METUP off the ground, I was all in. When I stepped back to pursue other projects, I continued to support Beth & METUP. Beth was a force. Beth roared and people listened. She roared until she couldn’t.

It’s important that Beth’s vision continues. She worked too hard, for all of us, for the ball to get dropped now. I can’t let that happen – I won’t. I know she’d kick my ass if I did and I’m not ashamed to admit I’m a little afraid she’d come back and do it.

That being said, It’s my intention to use this borrowed time to do Beth proud. I will be taking an active leadership role with METUP.  It’s my intention to help grow the organization with active volunteers so we can continue to address the important issues facing Metastatic patients through direct action.

I encourage anyone that is interested in getting involved with METUP or those that want to learn more about what METUP is all about go to METUP