Inaugural Orlando METSquerade

February 2, 2019.

Last summer, I met Lindsey Scholl at a conference in Tampa and she was the first to tell me that the wildly successful model of holding METSquerades to raise funds for Metavivor that started in Arkansas was coming to Orlando.  I immediately knew that I wanted to be involved.  I live in Miami now, but Orlando was my home for nearly 20 years and for my husband, even longer.

It was a labor of love for us metsters as we worked hard to put together an event that honored the men and women we lost in 2018 as well as those of us still living with Stage IV metastatic breast cancer.  Lindsey and her family did the most work and their efforts were not unnoticed by the crowd of more than 500 who packed the ballroom at the Loews Sapphire Falls Resort at Universal Studios in Orlando, Florida.

Our featured speaker for the evening, Lisa Quinn, talked about how she just started her 8th and final line of treatment.  There are no treatments left for her after this one fails to control her cancer and the only way she will live to be with her two children is for research to find more treatments for her.  She is living her life to the fullest and spending time with her children as much as she can in the middle of IV chemo.  My heart hurts for her and her family and yet she took time from her vacation to come speak before a crowd of strangers and tell her story.

During dinner, there was not a dry eye in the house after watching the Angel video that Jennifer Pace created.  Jen had been released from the hospital Saturday morning and then came Saturday night to the event.  That’s what living with Stage IV metastatic breast cancer looks like sometimes. Others that hoped to join weren’t able to because of illness, but they were with us in spirit.

I took charge of the living obituary project and am so thankful I got to interact with and learn more about the other women who are living with Stage IV metastatic breast cancer and thriving.  Each of them wrote a unique tribute to themselves, focusing on what makes them an individual and what they want to be remembered for.  The audience was reminded that without their generous giving, all of the living women honored would join the angels in the video.  Powerful stuff.

Being surrounded by family and friends at such a poignant event was immensely moving.  Watching the video featuring so many women that I got to know who were murdered by breast cancer in 2018 was both difficult and motivating.  One of the women honored at the event by her family and friends was one of the first women living with Stage IV metastatic breast cancer that I met online in 2017, right after I was diagnosed.  She died in 2018.  How can one not be moved to contribute to the legacy these women left behind?*

We did a great deal to raise funds for metastatic breast cancer research through Metavivor on February 2, 2019, but it was a drop in the bucket compared with the funds needed to fund the life-saving research for those of us living with this terminal disease.  We honored the women who have lost their lives as much as we can; however, the only way to truly honor their lives and deaths is to carry on their work, carry on their torch, carry their lives with us as we continue to put pressure on the powers that be to allocate sufficient funds to be meaningful to us living with this terminal disease.

Check out Metavivor.org and give to the only US organization that gives 100% of the funds they raise to Metastatic breast cancer research.  I’m not aware of any other organization in the US in that category and there are a lot of organizations that ostensibly raise money for research and yet keep most of it.  Putting money where it can be most likely used for the most good is important and could save my life as well as the other amazing women who are living with Stage IV metastatic breast cancer.

We are worth it.

 

* We didn’t have any men living with stage IV metastatic breast cancer with us at the event, but I do want to note that men do get this same diagnosis and also tend to pass away at the 2-3 year mark as well.

7 thoughts on “Inaugural Orlando METSquerade

  1. Your post and the outstanding event it discusses bring tears imagining some of the presentations you relate. I’d love to know more about this event and how you and the team pulled it together. I feel anxiously alone in Northern California in no small part due to the traffic and people’s reluctance to be inconvenienced. I’m cynical, but I’m also a 25 year miami veteran and the transplant to California still doesn’t fit me all that well. However I live in hope and after trying to pull together a once a month meet up to walk together around a beautiful park in Los Gatos for people with cancer, carers, friends of, etc. and failing to bring a little fresh air into our lungs and not feel so isolated, my heart says try try again.

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    1. I’m so sorry to hear about how you feel so isolated. Have you connected with Sandra Spivey? She’s been living with stage IV metastatic breast Cancer for a really long time and she’s amazing. I’m pretty sure she’s in California too. Look her up!!

      Liked by 1 person

      1. I will do just that. I appreciate your suggestion. It’s overwhelming sometimes with a partner who suffers seriously medication resistant depression, and carrying two loads, but I can say I am doing the best I can under the circumstances- the human spirit is a resilient thing, and I believe the metastatic thrivers are strongly resilient to any number of things that life throws at us. My oncologist once said that my resilience and my sense of humor would be integral to my long term survival, and ya know, I think he’s right.

        Liked by 1 person

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