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In Conversation: Interview with Mission Chair Rebecca Serencha & November Awareness Chair Daniela Lang, Boston Affiliate

Boston Mission Chair Rebecca Serencha and November Awareness Chair Daniela Lang speak with Community Engagement Coordinator Paula Mukherjee about their plans for Pancreatic Cancer Awareness Month and how to build strong relationships within affiliates. This interview has been edited for clarity and length.

Paula: Pancreatic Cancer Awareness Month is almost here! What do you have planned for November?

Daniela: We have a whole host of things planned. The first is part of the national campaign. The ask was to plan in-person sessions to talk about PanCAN in our communities. One organization that's local to us, Seven Bridges – Rebecca and I actually met the General Manager of Public Programs, Jack DiGiovanna (SVP), at PanCAN Scientific Summit. They are hosting us during one of their “Inspire Sessions.” We have the opportunity to reach out and talk with hundreds of their employees.

Paula: What does Seven Bridges do?

Daniela: They're working with PanCAN as part of Precision Promise℠ and Know Your Tumor®. They take biomedical data and put it in an environment where it's accessible and easier to understand. One of the things we talked about with Jack is how to explain to their associates why their work is so important to those of us that have been impacted by the disease.

We talked about when my father was diagnosed, and I learned about PanCAN. I reached out to PanCAN Patient Services from the recommendation of another affiliate volunteer, and they told me about Know Your Tumor. I called, we quickly got them the information they needed, and it reassured me that we were seeking all possible treatment options for my father. Jack said, “That's a really great story to share because [the associates] are doing the work behind the scenes to make that data available for Know Your Tumor. People are working heads down all the time. We get very busy, it's challenging work, and sometimes you don't connect the dots and realize the bigger picture behind it.”

We also have one of our affiliate members, Melisa Mantha, who is a home healthcare nurse and works with a lot of pancreatic cancer patients. She's a new member of our affiliate. She is planning to host a session with the slide deck PanCAN has provided. We'll be sharing that information with her organization and her colleagues. We’ll have two of those sessions, which really helps us raise awareness and talk about PanCAN and what we do as volunteers.

Paula: Absolutely.

Rebecca: Melisa is part of VNA Care, a home health agency. She sees a different type of pancreatic cancer patient because she's seeing them after surgery or as part of their at-home treatment regimen. She has such a unique perspective on dealing with patients and caregivers.

We have some community events and fundraising programs scheduled for November. The first is a 5K walk/run challenge in November. Melisa found out about PanCAN last November during the 150-mile “Pedals for PanCAN” challenge. We thought about how we can make a challenge this year. What about completing a 5K for every person you can think of who has been affected by pancreatic cancer? Once you start looking at your list, you think, “Oh wait, I also know my friend's father passed away. I know my mom's going through something. I know the caregivers. I know the researchers.”  You're a part of a group that you never thought you'd be a part of, but once you say something about pancreatic cancer, other people say, “I have my friend, my father, my coworker” and it just snowballs.

Daniela: Melisa’s also going be hosting a holiday photo session. During the month of November, folks can come to her for a quick photo session. She's going to ask that a donation be made for pancreatic cancer. We also worked with Minted, the stationery company where you can print holiday cards. They've offered a yearlong discount code (FUNDRAISEPANCAN – anyone can use!) and 15% will benefit PanCAN. We thought that would be really cool to pair with the holiday photo session: take photos with Melisa, donate to PanCAN, order your holiday cards through Minted. Win-win all around.

My kids, Enzo and Luca, had a donut stand last year in honor of their grandfather's birthday. We had apple cider donuts and apple cider. People just driving by or people that knew we were doing the event came by and were very generous. All of that money went to PanCAN. We're planning to do that again. Then Kendra Scott – they've been a great partner with us. We're looking to do another giveback event for anyone who purchases items online or in-store using a specific code. Twenty percent goes to PanCAN. We'll do an in-store event for a couple hours during one of those days. Last year, we had treats, pamphlets, and we had our “Ask Me About PanCAN” pins on. Then we have a couple of pizza fundraising events; some pizza spots in our area do giveback events as well. We'll create Facebook events for all of these and share with our community.

Paula: This is amazing. You have ways to touch different populations through both education and fundraising.

Daniela: Thank you! We have some other ways to raise awareness. We have a local news station, WCVB, and a reporter, Erika Tarantal, who's been an awesome partner. She comes to PanCAN PurpleStride and is always willing to advocate for PanCAN. On November 10th, she will be interviewing Rebecca and two other affiliate volunteers. That's going to be featured on WCVB on Erika's program on November 17th, World Pancreatic Cancer Day. Erica is well known in our community, so it's a really great way to get the word out.

We have a number of affiliate members who have already reached out to their local communities and asked for proclamations to declare that November is officially Pancreatic Cancer Awareness Month. Then we have our “Light Up Purple” program. So again, we have a number of affiliate members who are leading the charge here. Brock Cordeiro helps to get the Zakim Bridge in Boston lit up purple as well as the Prudential Center. Tim Morgan, who lives in New Hampshire, also reached out about getting bridges near him lit up purple for World Pancreatic Cancer Day.

We plan to do virtual outreach through social media. We came up with something last year called Purple Pipeline. We created Facebook posts that we posted to our affiliate group, which has close to 700 members. The posts were facts, symptoms, how to reach out to PanCAN Patient Services, things like that. We also did posts around topics like what it means to be a caregiver, how you can help a caregiver, and what it means to grieve. We didn't just stick to facts and symptoms. We also use them to communicate about our community and fundraising events. Every day throughout the month, we'll have a new Purple Pipeline post. We ask affiliate members to sign up to post so we have a variety of people posting. The ask is: once you see the post on our affiliate page, share it with your own friends and family by clicking that share button.

Rebecca: When my father was diagnosed, his chemo schedule was on Mondays. My dad was in Ohio, I'm in Massachusetts. I was trying to figure out a way to support him from a distance. Our family is very big into positive prayer and positive thinking. I declared Purple Mondays because purple's the pancreatic cancer color. Every Monday since July 2017, I have worn purple, talked about purple. I have my purple purse, my purple bags. I post every Monday on Facebook, sharing positive vibes or a quote about pancreatic cancer. The closer we get to November, it turns into “Don't forget November Awareness.” Every Monday, think of purple, wear purple, and people will start asking, “You wear purple a lot. Why is that?”

Daniela: We talked to our affiliate about other ways that they can help. Reach out to local newspapers. Just tell your story and ask them to feature you or your affiliate. My company sends a monthly health newsletter. What they did last year – and they agreed to do again this year – is showcase November as Pancreatic Cancer Awareness Month. I got an article from PanCAN that they posted.

Paula: What do you hope that the community will take away from these events and opportunities in November?

Daniela: One of the reasons I got involved was because I was trying to find answers for my father and make sure every stone was uncovered. I've had conversations with healthcare clinicians, just really raising awareness that if someone has new-onset diabetes but is otherwise healthy, that should raise some questions. If we can potentially have someone diagnosed sooner – maybe help save a life, right? That's what my mission is about.

Rebecca: Similarly, getting people comfortable and confident with the facts so when they do have lower back pain or unexplained abdominal pain, they don't get blown off, that they can say “I know insurance is going to say you have to do steps A, B, and C, but I know this might be a possibility based on my symptoms. Can you look at the pancreas to see if there's something there?” There's no early detection like a mammogram or a colonoscopy, but we can get people to start thinking about having that conversation with their doctor. My dad was one of the lucky ones; his cancer was found by accident. He had no symptoms. He had prostate cancer and the doctor said, “Let's get a radiology picture so that we can have a baseline.” The radiologist said, “There's something over here you might want to check out instead.” If we had waited a couple more months without starting treatment, he wouldn't have lasted three and a half years as a survivor. It’s the reason why I volunteer.

Paula: You want to give people the confidence to advocate for themselves.

Rebecca: Yeah, that's huge. It's easy to say, “I’m going to go right to my doctor and say, ‘I have this weird pain. Can you check out my pancreas?’” But you get into the doctor's office, and you shut down because they're a figure of authority.

Paula: It’s clear you two have a great relationship and you speak so highly of other volunteers in your affiliate. Do you have advice for volunteers who want to develop strong working relationships in their own affiliates?

Daniela: That's a really good question. We have a very supportive group. I joined the affiliate a few years ago and part of the reason why I stayed – of course, the mission itself, but the group is just so supportive. While we all have stuff to do, everyone is willing to help out. Our lines kind of blur a bit. Even though I'm November Awareness Chair, I help with PurpleStride.

Rebecca: Everyone has been so helpful. No one has ever said, “This project is mine and I'm holding onto it.” It's all-hands-on-deck.

Somehow, you're a part of a group that you never thought you'd be a part of. Before my dad was diagnosed, I had never even heard of pancreatic cancer. Our dads passed away within a couple months of each other. We walked a similar journey of processing grief. I would get texts from the hospice, and if something was interesting to me, I thought “Oh, maybe Daniela would like it too.” I think that's also where our relationship bonded. It's that shared journey.

Daniela: I definitely agree. We're not a support group, but we all have this connection. I think we all have so much empathy for one another. Every affiliate meeting, we have at least one or two new members who join. We go around and introduce ourselves and we briefly tell our stories: why we're here, why we do what we do. If groups aren't already doing that, perhaps that could help. We have some folks who are survivors. We have volunteers who have lost their parents, like Rebecca and me. We have volunteers who lost their spouses. You have volunteers like Melisa, who hasn't lost a loved one, but she works with pancreatic cancer patients regularly. I think we're just tied together. Telling those stories really does help to create that connection.

Rebecca, you met Melisa in person and had coffee, right? When I first joined, another volunteer, Jody, did the same. She said, “I'll come to your town. I'll meet you for coffee.” We chatted for probably two hours. She told me her story, she listened to mine. I will forever be grateful for that meeting. Those things really matter.

Paula: We've been bringing on a lot of new volunteers. What advice would you give to folks who are joining PanCAN for the first time?

Daniela: Don’t get overwhelmed and do what you can. When I first joined, I was a caregiver for my dad and that was my first priority. I wanted to be involved somehow, I just didn't know at what capacity I could be. Our affiliate was awesome. They said, “Come to the meetings. If there are things you want to help with and you can, great, but if you can't, no worries.” As time went on and I had more time to give, I got more involved. Life always throws curveballs and everyone's phase in life is different.

Rebecca: And it can be as simple as: you see the Facebook post, you see the Instagram post, the Tweet, and you share it. You don't know who in your circle needed to see that information.

Daniela: Even something small like that can make a big difference.

Paula: Definitely. Are you looking for new volunteers at this time?

Rebecca: We're always looking for volunteers. We have several key positions that are currently unfilled. We don't have a Communications Chair. Reaching out to WCVB – I had never reached out to a reporter before. But that's what you do. There are tasks that need to be done, you just do them. So yes, we're always looking for volunteers and even just being a member of the affiliate is being a volunteer.

Paula: When you're not volunteering for PanCAN, what keeps you busy?

Daniela: Top of my list are my children. I have a seven-year-old and a five-year-old.

Rebecca: Once a caregiver, always a caregiver. I was a caregiver during my father’s pancreatic cancer journey. He has passed and the role changed into being a caregiver for my mom as she travels the path of being a widow. My parents were married for almost 50 years. I have two older brothers, one's in New York, one's in New Jersey. I'm in Massachusetts, Mom's in Ohio. I have continued the caregiver role from a distance doing the best that I can. The caregiving transitions from the survivor to the widow, the widower, the people who are left behind. Part of why the Purple Pipeline has caregiver information is because we understand they are the unsung heroes.

Paula: That is really beautiful. I'm tearing up a little bit over here.

Rebecca: We're a big “wipe the tears” family.

Daniela: Yes, definitely. Many, many, many times. Rebecca has seen me with those tears, so we get it.

Paula: Thank you both. I’m looking forward to hearing about how your November events go!

Please feel free to contact Rebecca Serencha (rserencha@pancanvolunteer.org), Daniela Lang (dlang@pancanvolunteer.org), or Paula Mukherjee (pmukherjee@pancan.org) with any questions.
 


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Rebecca (left), Daniela (center), and volunteer Andrea Peralta at a 2021 fundraiser in Boston.

Posted by Paula Mukherjee on Nov 10, 2022 6:00 AM CST