Decompressing and Processing

The last two or three weeks were a whirlwind of activity and preparing for the Living Beyond Breast Cancer (LBBC) MBC conference (Thriving Together) this past weekend. If you didn’t have a chance to read the post I published last week about the lead up to the conference, you can check it out here and thank you to LBBC for sharing it on Twitter! I so appreciate how LBBC elevates others. As expected, being in Philadelphia from Thursday to Sunday with hundreds of participants in person and online was transformative and you can see from the fact that this post is published well after my usual 7 a.m. time on Mondays that I’m still recovering in more ways than one.

Here’s some thoughts/reflections from the looonnnnggg weekend …

• My conference experience began on Wednesday with a breakout session that I participated in about making multiple decisions about treatment when living a long time with MBC. The recording will be available on the LBBC website soon and I wanted to share my top five (5) tips here too: 1) Always be learning more about possible medication for you; don’t wait until progression; 2) Gather information and keep a running list of possible medication (don’t forget oldies but goodies, shiny new thing isn’t alway better); 3) Don’t be afraid to talk to multiple doctors (consider the difference between clinicians and researchers); different doctors have different ideas and different centers have different types of teams; 4) Learn as much as possible about the lived experience of medication — talk to other patients because health care workers often don’t have the lived experience; 5) Don’t leave quality of life (QOL) for last, consider affect on whole family, consider and learn about dosages and ways to focus on minimum effective dose versus maximum tolerated dose.  Making treatment decisions over and over and over can be a lot, especially when there isn’t a clear “best” choice, but it is doable.

• Sometimes you meet people in odd places who touch you deeply — while waiting to board my plane in Orlando to fly to Philadelphia last Thursday, I struck up a conversation with a lovely woman who’d recently lost her husband to metastatic pancreatic cancer. He’d been an attorney and she was an English teacher who ended up working at clinic helping to organize clinical trials. So many overlapping things — we had a lovely conversation and her attitude of finding joy even in the dark times was so refreshing.

• A Man Called Otto is an insanely good movie and is also probably not the best movie to watch while headed to a conference peopled with other terminally ill friends. My seat mates were a little weirded out by my crying and laughing and cry-laughing and laugh-crying the whole trip after I’d just laid on them what I was doing in Philadelphia. Note to self: sometimes people going on vacation don’t want to be reminded of hard things.

• As Emily Garnett always said, MBC is the shittiest club with the best people — saw this over and over and over again this weekend.

• Going to the conference is fun, but staying with dear friends who become family elevates the entire experience. Thankful for Melanie, Raejan, Amy and Lesley who had me belly laughing the whole weekend! We may not have gotten ANY sleep, but it was worth it to connect and share and process and just be together. It’s hard to explain to people who haven’t been through a shared trauma how we often go super deep super fast. My life will never be the same after bonding with these women; they make me better.

• Thankful for all the people who immediately pitched in to get all the things for the play organized. Raejan, who worked on the project way back when it was conceived, dropped everything to come to the MBC conference and help out. Amy and Raejan put all the scripts into the binders before I’d even planned to worked on them! Janice, Martha, Stephanie, Kelly, Melanie and Amy figured out how to make the reserved signs work, measured and cut the ribbons and ran down to take pictures of the chairs to be sure we had it right. Amy ran the livestream during the performance and helped with keeping me on track (including running to the store to pick up binders because I’d miscalculated!!). Kate and Brenda helped with checking people in and collecting $$. Kathleen and her mom, Patricia, took amazing pictures during the performance. Relatives of the readers pitched in to move furniture and organize the room. Kirby handed out the flowers to all of the readers and made sure that each of them felt so very very special. I’m sure I’m missing something/someone or several someones, but the point was that so many people just stepped up. Shittiest club with the best people, indeed.

• Amy and Cathy and I set up and worked on the Project Life booth during the day on Saturday and Lesley made it to the hotel in time to catch the latter half of the day and help with the tear down. We’re doing a lot of pretty amazing things at www.ProjectLifeMBC.com and it was so fun to be able to share those things with the conference attendees and meet some of our members and participants. As the Director of Mentorship for Project Life, it was such a wonderful experience to meet some of our mentors and mentees in person for the first time!! Also, if anyone wants someone to help with design and organization of a booth, Amy is your person!!

• When I attended the conference back in 2019 the last time it was in person, I didn’t know very many people. Met my roommate, who was also in the Hear My Voice class that year, and so many others for the very first time. Watching other people hug and connect again with each other was a little overwhelming back then. I didn’t think I’d live long enough to be one of those people who knew so many others and, as an introvert, it was inconceivable that I’d know that many people. This time, I was one of those privileged attendees who was connecting again or for the first time with so many people I’d met at other conferences or online. Reflecting on this experience and those who weren’t there because of death or illness or other circumstances changed the experience for me in unexpected ways. I prioritized going to the conference to be able to see others and spend time with them and would again; at the same time, the reminders of those we’ve lost is a heavy lift. At 6 years into this experience, I’m carrying the essence of too many dear friends with me. At the same time, I wouldn’t give up the connections with others just because losing them is hard; it’s absolutely worth it in the end.

Waking up yesterday and today to pictures on social media and discussions about attending the conference has given me some time to reflect on the experience. It also gave some people the opportunity to comment and bring up their perception that there are cliques, that some people are feeling left out, that they’ve withdrawn from the community and events like this conference because of that feeling. This theme, brought to my attention again during the December SABCS conference, has been the subject of many ruminations and discussions since then. You can read the blog post I published around that time period, Breaking Into Advocacy, for context and some suggestions on getting started in advocacy.

Here’s the thing … not everyone gets along with everyone. I know, shocking, but we’re all people first and we all bring the weight and breadth of our experiences before the diagnosis of MBC to this cancer experience.

I get that not everyone fits into every space or group; while all the pictures and even this post celebrates those friendships and connections that are positive, there were also challenges this weekend and hurt feelings that won’t dissipate easily. Not everyone is easy to get along with or connect with. We all have struggles and bad times and it’s not fun to watch others getting along and celebrating being together when you feel left out. I’ve been there and I know how that feels. While I don’t talk overmuch about the slights or outright vitriol directed at me in the past or even this weekend from others in the MBC Community, I feel those deeply and carry those with me too.

I wish I had the answer for each person feeling left out.

I wish I didn’t have to carry hurt feelings with me as so many others do as well.

This is what I know from my own experiences — it’s possible to feel left out one minute and the next, feel closer to another person than you’ve ever felt before. It’s possible to watch enviously as others hug and laugh and have a wonderful time and the next, be one of those people inside those circles. It’s possible to walk into a room of strangers one minute and the next have a deep connection to so many of them. It’s possible to watch longingly from the outside and then suddenly find yourself on the inside. It’s possible to have hate in your heart toward someone else and then suddenly see them in a new light the next moment.

It’s possible when you keep showing up.

I’ve met a lot of people in the MBC Community over the last nearly six (6) years. I don’t get along with all of them and vice versa. I’m not close with all of them and don’t always want to be. I am close to some of them, some of you. That closeness, those connections, have been forged, yes, from the shared experience of MBC, but also because of projects we collaborate on, from reaching out during hard days, from being vulnerable, from putting in the work to develop those relationships, from apologizing or making it right when something happens, from being present with others in their pain, in the mess.

Here’s my ask for all of you, especially those who are struggling to find their place — reach out to someone — I’ve often scheduled time with people who are looking for their niche to talk about options and I love being able to connect people with good organizations who will value them and their contributions. If you are wanting to start your advocacy experience, consider signing up for the Advocacy Bootcamp we are running at Project Life starting next month. The link to do that is: https://forms.gle/HHGrB4HAqRFRMfD97 and the application deadline is May 15th.

Whatever you decide to do, keeping showing up. Keep building relationships. Keep leaning into those people who feed your soul. It’s often painful, it’s often difficult, it’s often scary and it’s always worth it.