future

Get Out And Vote!

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I’ve never used my blog for political purposes. Today, that changes.

Today, I spent three hours with my granddaughter. I truly cherish every second I’m with her. Her curiosity, smile, and watching how she processes information even at this young age of (almost) ten months is an irreplaceable gift.

I couldn’t help but think about what is at stake regarding her future. Her ability to access healthcare and total autonomy over her body. The person she chooses to love and build a future with could potentially put her in danger. These are issues I never had to worry about growing up. These are issues NO ONE should have to worry about.

I’m not overstating when I say freedom is on the line with tomorrow’s midterm elections. People are running for office with no business in politics, let alone making decisions for the country. Most of us know this. To some people, what matters is a warm body getting elected simply because they agreed to regurgitate what others tell them to do.

I cannot emphasize enough how important every single vote is in tomorrow’s midterm elections. Don’t waste your voice through your vote. Don’t allow politicians to take personal or family decisions away from the people who should be making them.

There is a cancer running rampant right now in this country (and I don’t mean Covid). This country must be put back on track before it metastasizes and we run out of options.

If you haven’t already- get out and VOTE.

Dear Advocacy, It’s Not You; It’s Me

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At the end of last year, I made the difficult decision to stop all active advocacy in the Metastatic Community. In February, I officially resigned as METUP’s President. I haven’t disappeared completely, I am still available for individuals that need advice or help. I feel I will be more effective that way.

I threw myself into advocacy because I felt it was the right thing to do. My intention was to try to make meaningful change for those that may come after I’m gone. I diversified my activities. If it felt right, I would say yes when asked to take part in something new. I’m not someone who craves attention or wants any recognition. I’ve always preferred to be in the background; part of the scenery if you will. That didn’t always happen. I allowed myself to be out of my comfort zone a few times in group projects and while I am thankful for those experiences, I promise you, I hated every minute of it.

I, unfortunately, allowed my mental health to suffer because of my advocacy. I didn’t want the deaths of the men and women I knew to be in vain. I felt an overwhelming responsibility to keep going while my physical health was reasonably good. Meanwhile, I felt like a fraud. Who’s going to take me seriously when I’m still here after 8 yrs? I certainly don’t look sick, hell I wouldn’t even believe I had cancer so how can expect strangers to? Add a healthy dose of survivor guilt and top it off with a global pandemic that cuts us all off from socialization. I was low. I was unhappy.

Advocacy has changed so much. There is less and less that feeling of: “how are WE going to fix this” and a whole lot more in-fighting, cattiness, and “you’re doing it wrong.” There are these pockets of small groups that want nothing to do with each other for the stupidest reasons. I can only imagine how it looks from the outside but from the inside, it feels like there is this constant unofficial fight to be the top dog of advocacy.

It all changed when Beth Caldwell died. She truly was the matriarch of the community. The sad thing is there is still so much more to be done: pharmaceutical price gouging, restructuring clinical trials, research disparity but the center of attention right now is the systematic discrediting of a fellow MBC patient. I can hear Beth’s voice asking: “Who’s life is that going to save?”

In the past, I have tried to help. I’ve taken it upon myself and tried to be a voice of reason. We are more powerful & effective when we all work together, aren’t we? The fire I once had in my belly was gone. It isn’t empowering to me anymore. I cannot be around people that have these other agendas that have nothing to do with advocacy while boasting how awesome they are. In my experience, if you have to keep repeating your perceived status, it’s not as awesome as you think and no more than what others have/are doing. Any respect you may have had is been decimated by your own words and actions.

I’ve given MBC advocacy all I had. I’m proud of all the things I have done and I don’t regret any of it. I made incredible friendships because of it. Now, it’s time for me to focus on my family and the people I love the most in this world. I am turning my attention to the future. More specifically my Granddaughter: Piper Olivia who will enter this world in January. I am not going to squander this amazing gift the universe has bestowed on our family.

Miss Minnie in charge of the gender reveal!

Would You Love Me If….

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Would you love me if I burned dinner?

Would you love me if I forgot to buy toilet paper?

Would you love me if I dented the car?

Would you love me if I left Christmas shopping to the last minute?

Would you love me if I’d rather stay in on a Saturday night?

Would you love me if I forget to put gas in the car?

Would you love me if I hate to fly?

 

 

Would you still love me if I had a miscarriage?

Would you still love me if the doctor said it’s Cancer?

Would you still love me if I had scars from surgery?

Would you still love me if I no longer had breasts?

Would you still love me if I lost my hair?

Would you still love me if I could no longer work?

Would you still love me if medications made me moody?

Would you still love me if I couldn’t go out because of chemo side effects?

Would you still love me if the doctor said it was Metastatic?

Would you still love me if you knew I was going to die?

 

Will you love me…….now?

I Still Have Work To Do

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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