Project Life and Cancer Survivorship With Lesley Glenn
At the recent 48th Oncology Nursing Society (ONS) Congress, metastatic breast cancer survivor Lesley Glenn sat down with Oncology Data Advisor® to tell us about Project Life, a virtual, membership-based survivorship resource for patients around the world living with stage IV breast cancer. As well, she discussed her ONS presentation Practicing Inclusion in the Emerging Science of Metastatic Cancer.
Oncology Data Advisor: Welcome to Oncology Data Advisor. Today, we are here at ONS Congress, and I'm joined by Lesley Glenn. Thank you so much for joining today.
Lesley Glenn: Thank you for having me.
Oncology Data Advisor: Would you like to introduce yourself?
Ms. Glenn: Sure. My name is Lesley Kailani Glenn. I have been living with metastatic breast cancer for 10 and a half years. I live in Southern Oregon, otherwise known as the Rogue Valley, and I have two cats and one dog.
Oncology Data Advisor: Awesome. So, I'm interested to learn more about Project Life. Would you like to share how you came about to found it and what it does?
Ms. Glenn: Yeah, absolutely. Project Life came out of my own experience of not being able to find survivorship programs for those of us living with advanced disease. So, it was a big, big topic within the metastatic breast cancer community. And for so many years, I was always challenged with the gatekeepers that would say, we don't have anything for those of you with metastatic breast cancer, so come back to us when you're done with treatment. And I'm like, well, we will never be done with treatment. Therefore, it was like I really had to curate how I wanted to live the rest of my life. And with new treatments, research, and new advances coming, it's like, we're living longer. The statistics show three to five years. I'm 10 and a half years out. We deserve these resources and survivorship programs just as much as the early-stage people.
About three years ago, I said, "All right, I've been complaining about this for a while, so why don't I do something about it?" So, that's where Project Life was founded. We opened right at the start of the pandemic. I've had to pivot because what I wanted to do was take things on the ground, but it's like, oh, can't do that anymore. Everything has to be virtual now. So, trying to figure out, okay, well what can I do that's virtual, that's supportive for men and women and their caregivers that are affected by metastatic breast cancer? And I thought, well, what about a wellness house? So, the Wellness House is the model of a house and every room on the website. For example, if you go into the garden, you'll find our yoga and meditation. You'll find our writing, our journaling classes. You'll find our healing circles, which is our model for support groups. We do therapeutic art; in the kitchen we do nutrition and live cooking classes. In the foyer you can sign up to find a mentor and get resources if you're early diagnosed. So, we have movement classes. We really are about integrative oncology and providing real psychosocial and support and community. And we are now global. We have people from Norway, Australia, and New Zealand that participate. We're just over two years old and have over 500 members so far.
Oncology Data Advisor: Wow, that's amazing. I really love that it's set up like a house. That's a really interesting concept. Such a great way to incorporate the challenges from the pandemic and use it as virtually. Great. So, you're about to present a session titled Practicing Inclusion in Emerging Science of Metastatic Cancer. I would like to give a little preview of what the presentation will be about.
Ms. Glenn: So, basically, I'll be sharing my personal story and what inclusion means for those of us living with advanced disease. And it's so much more than just race and color. Its, we have advanced disease, include us in the conversations that are going on, include us and make sure that you're not disregarding when—especially young women—are being diagnosed with stage IV MBC at alarming rates. And it's because they're being dismissed for their symptoms. And so, I really want clinicians and nurses who are on the front line to know if someone young comes through the doors and they're like 24, they don't fit the bill of someone that would be diagnosed with breast cancer, just listen to them because they know their bodies. And there's countless stories of young women being diagnosed with stage IV because they were dismissed, and by the time someone listened to them, it was three or four years down the road.
So, talking about those kinds of things, talking about inclusion as far as it means to the LGBTQ+ community, which is such an overlooked community that Project Life is starting a new initiative to really look at them and to see what their needs are so that they don't get brushed under the rug, because that's a whole different topic of challenges and things that they are going through. But most of all, don't forget about us. We're not dead yet. I'm still alive. I'm still here, and I still want to live my best life. So yeah, just hope to inspire and share what I've been doing.
Oncology Data Advisor: Absolutely, that's great. For nurses who aren't able to attend the talk today, are there any take home messages you could share that they can bring back and use when they're treating patients?
Ms. Glenn: Absolutely. So, my number one take home is just listen to us. Oftentimes we show up in the infusion rooms, and if you listen, you might pick up on someone being really vulnerable without them really meaning to be vulnerable, where they might be facing financial toxicity or there might be a breakdown in their relationships. And just that little bit of caring and understanding that this may be a really crappy day for us, and if we say we don't want to get poked more than two times, we kind of really mean it. Especially for those of us that have been doing it for so long. If I say, you can try two times, if you don't get it, then we're not doing this today.
Oncology nurses are so special that we want them to take care of themselves just as much as people say, "Take care of yourself," as a cancer patient. We're like, please take care of yourself. Spend time with your family, do your vacations, get your massages, get your nails done, because if you're doing well, then that just passes over to how we are being treated as patients.
Oncology Data Advisor: Right, definitely. Well, this is so great to talk with you and to learn about Project Life. Thank you so much for sharing all this.
Ms. Glenn: Thank you.
Lesley Glenn is a metastatic breast cancer survivor and passionate advocate for those living with metastatic breast cancer. Ms. Glenn recently founded Project Life, a virtual wellness house specifically for those living with metastatic breast cancer and their caregivers.
For More Information
Glenn L & Rosenzweig MQ (2023). Practicing Inclusion in the Emerging Science of Metastatic Cancer. Presented at: 48th Annual Oncology Nursing Society Congress. Available at: https://ons.confex.com/ons/2023/meetingapp.cgi/Session/5033
Transcript edited for clarity. Any views expressed above are the speaker's own and do not necessarily reflect those of Oncology Data Advisor.