Hear My Voice Class 2019 @ Living Beyond Breast Cancer, some thoughts

Philadelphia is cold!!

It’s also a bit gloomy and the air is crisp and cool.

This Florida gal is freaking chilly.

Oooh, ships!!

Those were some of my internal thoughts upon landing in Philadelphia on Thursday afternoon. In light of the fact that I sprained my left knee AND ankle recently after a fall, I signed up for a wheelchair escort at the airport. I think I’m ALWAYS going to sign up for this–I got to go to the front of the line at security and a cheerful tour of the airport’s terminals as a bonus! A few funny looks since I know, I don’t look that sick, but no comments. I was ready to address any comments, though, and to educate as I could about the reality of living with Stage IV Metastatic Breast cancer. The only people I had the chance to talk with were the gate agents and the actual transporters. I suppose that will have to do.

Thursday: We had some time for sightseeing since the hotel is located a few blocks from some significant landmarks of American history. I wandered for a bit with some new friends and took pictures of the famous bell and other historical things. Honestly, the blooming cherry blossoms were the highlight for me. We lived near DC for a time when I was a child and I still remember the cherry blossoms blooming every Spring. Then, our first event of the weekend, the Hear My Voice class of 2019 welcome dinner. We got to hear from our mentors (graduates of previous classes), discuss some goals and fears and then we were released for the evening. I did see that some of our compatriots continued the party with some cocktails; my roomie and I went to bed!! Shout out to the LBBC staff who made the room assignments, you matched us up well.

Friday: Today was full of fellowship and training and laughter, some tears, and really great information. The Hear My Voice (HMV) class of 2019 is a diverse group of women from all over, all of us with varied life experiences and ages and from all over the country. Some of the statistics we discussed today were about us–more than half of the group of women assembled by LBBC were diagnosed de novo metastatic, meaning that we were Stage IV from the beginning; our ages range from mid-30s to the venerable 74 (our more experienced members had great insights and one is still on Ibrance after participating in the original trial!!). The resources and depth of support available to us through LBBC will jump start our advocacy efforts for the next nine (9) months and beyond. To me, one of the best parts of the training is that we’re organized into groups with a mentor, someone who has been not only through the HMV program but have also continued that advocacy beyond the requirements. We ended the day with a dinner with the newly arrived participants in the conference, which officially starts tomorrow along with some art therapy and blending our own essential oils. Can’t wait to use the energizing blend I made!

Saturday: The medical part of the conference started today. The doctors who spoke today gave us a good blend of the technical aspects of their work along with the way forward. The speaker at the opening session actually said during her opening spiel that she considers Stage IV metastatic breast cancer to be chronic. What the actual fuck?!? She went on to say that she apologized in advance if she offended anyone. Perhaps she had an inkling of the ripple of offense that spread through the audience.

In my own humble opinion, since chronic conditions mean that the person with the condition still live a normal life expectancy while managing their disease. Since the median life expectancy of those of us diagnosed with Stage IV metastatic breast cancer is still 2-3 years, that’s definitely not a “normal” life expectancy. I read a recent study that said those of us with bone only Mets can look at a ten (10) year life expectancy.

THAT MEANS I AM LOOKING AT EIGHT (8) MORE YEARS. EIGHT. That’s not a normal life expectancy for someone who just turned 40.

Metastatic Breast Cancer is NOT CHRONIC.

Ok, I feel a little better after including those capitalized words.

After an emotional day of learning and meeting other stage IV metastatic breast cancer patients, I participated in the second Die In since I’ve been diagnosed. The Die In concept and METup as an organization was born here, at an LBBC conference. The founders of METup were graduates of the same program I am here to complete. I’ve never felt as close to understanding the focus and the conclusions made by the founders of METup as I have this weekend. The experience this time was very different from my first Die in, but it was no less powerful.

After the Die in, I had the privilege of attending a screening of “Love Always, Mom,” a documentary made by a previous graduate of the Hear My Voice program about her journey to be a parent through surrogacy after living with Stage IV Metastatic Breast Cancer. I cried nearly the whole time. It was powerful. It was heartbreaking. It was perfect. I’m already plotting how we might be able to bring a screening to Miami!!

Through 2019, the movie will be available at private screenings and then I hear that it may be streaming through Amazon soon. You can be sure I’ll be sharing information about it as soon as I hear more!!

Sunday: It’s the last day of the conference. The morning was taken up with the logistics of what we’re doing next and how to accomplish it. My head and my heart are entirely full. We were asked today to use one word to describe how we felt about the conference and the Hear My Voice training. My word was “exhausted.” That’s not a dig or a knock on the weekend or the training, it’s just that being around so many people and being “on” for an entire weekend is hard for this introvert.

I’m extremely thankful to all of the staff at LBBC who participated in making the training successful and the CEO of Triage Cancer, Joanna Morales, for doing an amazing job of facilitating the training. Becky, in particular, worked very hard to accommodate my request for raw vegan food and I know that wasn’t easy!

Overall, I know that this weekend and the training has only enhanced the advocacy efforts I’ve started and also helped me focus on what is the most important efforts to focus on. I can’t be all things to all people. I’m not someone who will be palatable or approachable to everyone. I’m really ok with that. My strengths and weaknesses are different than so many others. I know that one of my strengths is that I’m not afraid to speak up, even if I’m not 100% correct. That may offend some people, despite my good intentions. I’m actually really ok with that because that is being true to who I am and the skills I’ve obtained in my life and work.

Now to head home to the warmth of Florida and hug my guys!

2 thoughts on “Hear My Voice Class 2019 @ Living Beyond Breast Cancer, some thoughts

  1. I was there too!! De novo 7/2/18. I get so sick of people (including my boss) say this is a chronic illness, as if I can just pop an Ibrance and a letrozole, and live out a normal life expectancy. I’m 45 years old. I was also at the movie!!! It was incredible. I was about to begin adoption (as a single mom) then I got diagnosed. Life is so much different now, and people just don’t get it. I know that people mean well and don’t want me to die, but it feels like a sham. Like I have to pretend that I’m fine.

    Liked by 2 people

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