00:00 Megan: Hello, I am Megan Daniel, Administrator for Community Partnerships and I am joined by Joe Dziobek, Partnership Director, and we are back with a new series of interviews featuring survivors who are part of the Grupo Esperanza support group that is run by the Rhode Island  Latino Cancer Control Task Force. Today we are joined by Wilson Villamar, who is a Chaplin at Beacon Hospice and co-chair of the Grupo Esperanza support group. Betty Bernal, who is co-chair of the Latino Cancer Control Task Force, and Mary Monier, who is a cancer survivor and former chair of Grupo Esperanza. So, thank you all for being here today.

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00:42 Mary: Thank you. 

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00:44 Joe: Welcome.

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00:45 Megan: Um, so to get started Mary, if you could tell us a little bit about yourself and your cancer survivorship journey. 

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00:53 Mary: Um, my cancer journey started when I was born. I was born premature with skin cancer and then it didn't hit me again  until the age of 30, where I had, um, colon cancer. And it affected the sigmoid. And then, from there on it just continued to be okay for a couple of years and then after 30 years, everything just popped all out, all of a sudden.  

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01:22 Um i've had, um, my right kidney removed due to cancer, i've had cancer on the gland on the neck, and i've had small intestine cancer and pancreas and, um, the the small intestine, the pancreas and my stomach. And, um, I this was the first time I received chemo from all the cancers i've had.  

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01:50 And it hit me very hard it was a totally different experience and I was very sick most of the time but I am done with chemo, thank God. And, yes. And I can move forward and see what life has to offer.

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02:05 I did suffer a lot of side effects from  the chemo. And one was the tactile touch in the feet where they can't feel, um, certain things. And so, from that I am seeing medical doctors and trying to do light exercises to see if I can get the feelings back into my hands and my feet. 

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02:26 Joe: My wife whose an ovarian cancer  survivor has that condition, the nueropathy. 

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02:34 Mary: Yes.

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02:37 Joe: In her hands and feet. Which can be troublesome sometimes. My goodness, you've certainly been through a lot Mary. And you're still smiling now.

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02:42 Mary: Life is good. I have to be thankful to God for life.   

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02:52 Megan: We're glad. So, you mentioned, um, this is your first  round with chemotheraphy, did you have different treatments for your other cancers or?

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03:00 Mary: No, my other cancers they caught them in time. They never went to stage one or stage two. This one was stage two.

 

03:08 So, um, it was by accident that  it wasn't noticed at first. It was one year, every year I have to have a  colonoscopy and an endoscopy, and the one year I didn't have the endoscopy the cancer was already growing inside of me and we didn't know it. And so, the following year when I went in because  I was complaining of pain, that's when they discovered that there was something in there.

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3:30 Megan: Wow. Yeah, I guess that speaks to the importance of screening tests and

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3:37 Mary: Yes. Screening is very important.

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03:41 Megan: Yeah. I also wanted to ask about, so you said you were born with the skin cancer, did genetics play a role with that? Do you know?

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03:49 Mary: Yes it did. In nineteen, in 2007, I was tested for genetics and, um, I came out positive for the lynch syndrome, L-Y-N-C-H. And so, um, I have passed this information down to my siblings and my children, my adult children. And unfortunately, a year and a half ago, my oldest granddaughter, who just turned 30, was diagnosed with stage 4 colon cancer affecting her liver. And that was through neglect of all the years of not knowing that it was growing. It was growing for eight years before they detected it.  

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04:32 So, um, she's doing well. She went through a tough round of chemo as well. And, um, I have to say  

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04:39 She's back at work and doing good, thank God.  

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04:47 Megan: Great to hear. Um, so, I wanted to ask you a little bit about the support groups. So, um, how did you find out about Grupo Esperanza and when did you join?

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04:55 Mary: Um, I had been co-chair person of the first group Joseph Pueblo Yes I Can, which I had started  years ago with Betty at, um, St. Joseph's Hospital when I was working there at the lead center. And, um, I used to run groups from there and then when I handed it over to Betty we went a few years with nothing and then Betty contact me and said to me, Mary we have a new group going would you be interested in coming? And I said yes.  

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05:26 And to this day I, you know, I was faithful to my group again. I, I like the group because it touches a lot of subjects that everyone needs to know about. Some meetings, everything, all the meetings are not about, um, information. Some are about fun, to relax, do activities. And that's great for the mind, you know? And what they're doing is great. I applaud their efforts at keeping everybody together.

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05:52 Joe: So, Mary, have you been continuing to meet in person or are you meeting through Zoom or?

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05:59 Mary: We're meeting through Zoom. Every second Thursday of the month.

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06:05 Megan: Was that 

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06:09 Joe: Have you found attendance..I'm sorry go ahead Megan. 

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06:11 Megan: I just wanted to know if that was an easy adjustment for the group. Is it still kind of the same dynamic?

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06:17 Mary: It's um, it's a little hard for some of the members. They have not been able to connect to the WhatsApp app to get into the Zoom meetings. And, um, I don't know for their own reasons why, but um, the group is smaller when we meet through Zoom. But everybody is waiting for the moment when we can meet in person again. 

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06:41 Megan: Yeah, I bet.

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06:43 Mary: Hugs are missed. 

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06:47 Megan: Joe, what were you going to ask?

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06:50 Joe: Similarly, a similar question. You know, if you had seen if the participation had dropped off or the, um, the amount of participation from the people attending the group because it was Zoom and not in person

was a little less engaging, something like that.

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07:16 Mary: Yes. It has, it has been. It has dropped due to less engagement in person and um, we understand  that but a lot of people try. Me, myself, I have one of, one of the members that I call her and I keep her in touch with what's going on. And try to, I keep persuading her to join us on the meetings and she has not been able to do so to this day.

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07:40 Megan: That seems to be a big barrier with the technology and we spoke

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07: 41 Mary: Yes. 

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07:42 Megan: with one of our Board members actually in these interviews so it seems like it's a big barrier and something the cancer community and, and I guess, the community in general can work on. 

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07:54 Mary: Right. I agree.

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07:58 Joe: I was going to say Mary, you are a very resilient person. What, what do you attribute that to? I mean, obviously you've had skin cancer, you've had um, you mentioned colon cancer, cancer of the kidneys, stomach, etcetera. Someone else would have just given  up. So, how do you, how do you get through this? 

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08:18 Mary: Um, through the grace of God and my love for my family. And having people to support me in those moments when I'm down and out.  

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08:30 Megan: So something like the Latino Cancer Control Task Force?  

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08:33 Mary: That's when the Latino Cancer Task Force comes in. I've been a part of them also. And, um, I enjoy working with them and being with them and being active in the community.

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08:42 Megan: Yeah. We're glad you found them and clearly they have helped you through this.

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08:50 Mary: Yes. 

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08:52 Megan: So we're glad. And, speaking of that. I wanted to bring up COVID-19 a little bit. Um, how was your experience changed? So you said you were going through, this was your first time with chemotherapy  and, you know, having the pandemic going on. What was that like and how was that different, um, to your experiences with cancer before? 

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09:13 Mary: It's been very hard, it's been harder  than um, the other experiences from before due to the chemo. And also to the COVID because it restricts me due to my low immune system. And, I'm also asthmatic so, you know, at 65  years old you have to be very careful.

 

09:34 And um, it is what it is. And, I have learned to just um, balance it out little by little. It, i've had my moments when i've been down and depressed because that's normal going through chemo and then being locked up without being able to go anywhere. But, um, phone calls, um, you know, with families and loved ones have helped me a lot.

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9:56 Megan: Yeah, like Joe mentioned, clearly you're very resilient having all of these things happen at once. That's pretty amazing.

 

10:07 Mary: Thank you.

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10:09 Joe: What one of the things that, um, some cancer patients have talked about and you touched on it was sort of that isolation you feel a bit. Particularly, i've been. You know, some of the staff in the cancer centers were talking about how, you know, it's a dilemna for them because sometimes people are coming in for cancer treatment and their spouse wants to come in with them and they're not allowed to, you know, for safety reasons.

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10:39 And, you know, as one of the cancer directors said to me, it's a real dilemna because the nursing part of  you knows that you really shouldn't allow that but the human part of you realizes how much this person would benefit from having the spouse there and you still have to say no. So it puts everybody in kind of a tough spot. 

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11:00 Mary: It does.

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11:03 Joe: But it sounds like, could you talk a little more about with the Latino community how that, and Esperanza in particular, how that  has kind of been part of your network, how you built that. Cause I think it's important. One of the things that strikes me about you Mary, is you've got your family but your family is  Louisiana or you said Florida and um, away. So you've had to rely on some of the, your support system or build a support system locally, right? 

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11:32 Mary: Right.

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11:33: Joe: So, so. 

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11:35 Mary: Well, I haven't had a big support system but that's where the cancer, Grupo Esperanza, comes in because I was able to go to the meetings through rides and, or Uber. And, um, for even for the other cancer survivors, the group has meant so much to us because it's a place where we gather once a month for two to two and half hours. It's where we all um, change um, things that have happened to us or in the past month.

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12:06 Um, we bring everybody up to date. Um, we pray for those that are still sick or going through  chemotherapy. And, it's a great support group and I think it's very much needed in many places and i'm so glad that we have it here in Rhode Island because it's not available everywhere.

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12:24 Joe: Yeah. That's, that's wonderful. 

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12:29 Megan: Yeah.

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12:33 Mary: The Latino community benefits from it because it's in their own language. And they don't have to struggle with trying to speak English. 

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12:37 Joe: Yeah. Uh, Dr. Calvino is on our Board of Directors, I don't know if you know Dr. Calvino but

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12:42 Mary: Yes. 

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12:44 Joe: Uh, you know, he was talking about sometimes how the language can be a barrier, you know, that for example for men maybe they don't go for screening because they're not as aware of how important that is  and maybe there isn't that same kind of, uh, attention they might get from the healthcare provider if there isn't a language barrier.  

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13:10 Um, so those are all things that we hope to work on. One of the things the Partnership is, wants to focus on in the coming year, you know, health equity. Trying to, within the Latino community, within the Black community, within the LGBTQ community, trying to get those areas that are underserved, um, uh get more  services so. These types result to give people uh, an understanding of what, you know, what you're going through. 

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13:44 Mary: Right, if we had more services available i'm sure that the Latino community would attend it,

well not now with the pandemic but through other ways. And, if we could get them to get into the Zoom, they would see how much easier it would be so they could enjoy the meetings just like they used to before.

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14:05 Wilson: Mary, um, Wilson here. 

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14:11 Mary: Hi.

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14:13 Wilson: Hi. I have a question, um, in this experience in your trajectory with um, cancer do you belong to other, um, other groups um and, and if so, do you find the support that you're finding in the Latino community and what is the difference? If any.

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14:29 Mary: Uh, my, my I only have two groups that support me and that is the Grupo Esperanza and  the groupo called mujeres. And, we meet once a, once a week on Fridays through Zoom. But, um, both groups have been awesome in support because um, when you're down and out and you really don't want to connect, you do connect and you find that it uplifts your spirits. And it's good to see other members that belong to the group and share with each other. I think that's a great factor, that we are able to um, commit, and be able to connect with each other through Zoom.

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15:10 Wilson: Mm, yeah. See, I was talking more about in the past, you know, when you didn't, when there was no Grupo Esperanza, what was there another group that you belonged to? And do, you know, do you see any differences in the way the meetings happen?  

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15:25 Mary: No, I did not go to any other groups. Once I stopped running the groups I was running, I stopped going to meetings of any kind. Um, it was something that just happened, you know. And then, that's why when Betty told me that Grupo Esperanza was starting and that it was going to be going on I was so happy to hear that. 

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15:50 Wilson: Well, we're happy you're part of the group.

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15:50  Mary: Thank you. 

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15:53 Wilson: Yeah.

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15:55 Megan: I'm just wondering, when you weren't going to the support groups, is that because there was a lack of support groups that you thought would be beneficial to you?

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16:00 Mary: Right, because I had been to another group support but, I didn't find it as close or as, they are caring but there are people in the group that I found there was a lack of knowing everybody and so, it didn't run the same way that Grupo Esperanze goes. Grupo Esperanza, everybody knows each other.  

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16:28 Everybody comes in, hey how are you doing, we hug, we kiss, we sit down. We get up together, we have snacks, meals, whatever. But, in the other group even though there might have been refreshments or, it wasn't the same. So, I just stayed away from everything. And what I did back then was I used to go dancing on weekends. I love to dance.

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16:46 Megan: Aw that's great. So there's kind of a connection between the arts

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16:53 Mary: That was my, um, my way of um venting out, was going dancing.

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16:59  Megan: I love that. 

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17:04 Betty: Well, I think that that was the reason why we, uh, created. Initially, uh, we did the Spanish version of I can cope from ACS. 

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17:14 Mary: Yes.  

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17:17 Betty: I was working with the ACS at that time, so when I met Mary Monier and I asked her and her boss if we could run the I can cope at St. Joseph's Hospital it was well received. It was the only Spanish support group. So when they fade out, um uh, because Mary left St. Joseph, and we don't have no one to run, it was for a couple of years without any support group for the Latino community.

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17:49 So when Wilson and I decide to run it again and change the name to Grupo Esperanza it was immediately, I mean we, we we had most of the people that participated in prior group but we also attract new people. 

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18:06 Mary: Right.  

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18:10 Betty: And that's really important because we have that connection that Mary refers. It is different. And uh, we feel like it's so integrated, so well connected, that we are a family. We become a family. And, and, and Isabelle and Wilson had been done a wonderful job in trying to keep this group together through the months. 

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18:36 And, now with, with Zoom. We, we told them we maybe have a bit of participation with Zoom, we didn't find out what is the reason why not everyone is participating now. Because, I mean, we told there's no, there is no, sometimes we had the transportation problems or people who are, uh, doing chemo they don't feel that they, they can go to this support group.  

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19:06 But we will find out and we will try and, and as Mary says she is always contacting a couple of the survivors. You mentioned of only one but it's true that you always being in contact and trying to get them to come. And besides, all the survivors are doing the same. We have, uh, volunteers and what is the beauty, the beauty of having Mary with us. I mean, to me, Mary is one of our uh, biggest role model for the, for the cancer  survivors. I mean, all the struggles, big struggles that she went through and she can add it to is always kind.

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19:47 She's always been positive and people look at her when they have their own little battles. And, I mean, seeing her is uh exemplary for other survivors, too. But, not only that, Mary was one of the best volunteers that we have with the Latino Cancer Control Task Force. She took a role in the leadership group but uh, I mean, it is really. I really commend Mary and I thank God for putting her in our work way and making her, uh helping us throughout all these years. So, um how long you've been Mary, when I founded the Latino Cancer Control Task Force back in 2006,

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20:40 Mary: Yes. 

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20:41 Betty: You were among the  leadership in that, in that 

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20:45 Mary: Yes.  

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20:47 Joe: So, if, if money weren't an issue, is there one thing that would make a difference, would help to make a bigger difference than what services are available now? If, if, again funding wasn't an object. Wasn't a barrier for you.

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21:05 Mary: Funding proves to be a big barrier, a big factor because it provides for a space for us to meet, or even to pay for the Zoom so that we can meet together. And, um, without the funding uh, we wouldn't be able to reach a lot of people. So, that's what uh, how I see it on my part. That we need the funding to make it go well. Um, especially for meetings so that everybody knows that there's somebody out there that cares and that we're there for you, you know.

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21:47 Wilson: I think that, um, one of the problems we have is with the outreach. If we were to have a person who will do outreach, you know, with phone call, putting out meetings, you know, inviting people. And finding out why is that they cannot join this month or whatever, probably would have a more connected group and because we all, all we do is in the volunteer basis sometimes difficult because life gets in the way.

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22:13 Joe: Absolutely, yeah. 

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22:16 Wilson: So, um, I, I do believe that  we need, we would love to have that. A person who will do that uh, outreach.

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22:28 Betty: Hey Wilson, I was thinking the same. I mean if, if money is not, is not, is not an  issue I think that part of the Latino Cancer Control Task Force needs us to have a dedicated person to connect survivors with the resources, to check on survivors, to make them to come to the meetings. Not that we assume. And also to always look for uh, uh  innovative ways to keep them uh, engaged. 

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22:55 Mary: Yes.  

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22:59 Betty: And that's, that's what uh money to pay a dedicated person and a space to have an office. Because we have everything that belongs to the Latino Cancer Control Task Force is either in my, in the trunk of my car, in Wilson's house, in Isabelle's house. So, we don't have any space that we say this is our work, our um, the place, the place that we can  even make phone calls for, for cancer survivors. 

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23:27 Wilson: And I think that, um, what we need to understand is the group really tries to um, I don't know, bring together a lot of stuff that people need. That they wouldn't find somewhere else, you know? It's not just the meeting. We have an annual retreat, a day where we gather together. We do celebrate different occasions and we try  to provide with things for the survivors. So they will, you know, diaries, or they will continue to write their experience. So, there are a lot of things that it's not just the meeting itself, you know. It's meeting, it's retreat has food, you know, for people to eat. So, I think that our  group, in that sense is a little different because many of our survivors don't really have a lot of resources from somewhere else for this kind of work.

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24:22 Joe: So it sounds like, it sounds like your group is a support group, but it's also like a social work group in a way. People like Mary taking on responsibility to try to engage people, to get to the meetings. And you're talking about having food, or maybe somebody finds out about another resource that they were not aware of, um, before. So it sounds like you certainly, almost um, create like an umbrella over somebody, right? Where you, you're trying to provide a lot of different things out of this support group. 

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25:06 Wilson: Yes. Um, because many of those, that sometimes people don't have the, the services or they don't have the information. So we try to be a group that involves support, listening, resources, education, outreach, connection. It's just a way for us to help the survivors, to try to do the best they can in any given situation. You know, the people I um, the people who don't show up to two or three meetings, I try to find time to call them and say, hey I haven't seen you, what happened, are you okay? You know, that again, involves a lot of energy, time that we don't always have.

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25:51 Joe: Yeah, yeah. 

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25:56 Wilson: And the thing is, you know, many of our people, I think I had told you before, don't have the services in their language you know. I do believe that many of us would benefit probably from therapies or  psychologies to whom we can talk in our language about these struggles. The many things we are finding along the way. 

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26:23 You know, I consider Mary to be a pillar of our community of support. You know, her spirituality is such, her faith is such, that these, I think a lot of people find a lot of that it's not only Mary finding her strength herself from her spirituality, but a lot of people  also are looking at her and her struggles and her sprituality and her faith. And people are feeling connected to that and drawn to that. And it, it's just wonderful, the energy that eminates from the relationship and from the stories. You know. So I thank you, Mary, for your participation, thank you for 

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26:59 Mary: Thank you.

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27:03 Wilson: for your being and for your doing, for you staying present through the struggles, your own struggles and the struggles of all the other people that you meet.

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27:08 Mary: Thank you. 

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27:12 Wilson: You're welcome.

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27:15 Joe: That's quite a tribute, that's quite a tribute.

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27:19 Mary: Yes, I know. He left me at a loss of words, all I could say is thank you.

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27:25 Megan: So, I just want to ask you one last question um, Mary, if that's okay. Um, to close us off, um, I guess what are your biggest takeaways from your cancer survivorship experience, and what advice do you have for other cancer survivors? Particularly in the Latinx community.

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27:41 Mary: Just hold on to your families and friends and your faith most of all, most importantly. Always have a positive outlook on life because life is beautiful regardless of the struggles we go through. There are ups and downs, and all I can say is um, what works for me may not work for everybody but, I would say to everybody don't lose your faith. Because it's very hard to lose faith, especially when you're, you hear the first words, cancer. It's a big shock to people.  

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28:18 And when you're not explaining the meaning or the significance of it in your language it makes it harder. It's a harder struggle. So, if we could have more uh, Spanish-speaking interpreters in many fields, it would help a lot of the communities to better understand what they're going through. But, um, just stay strong.  

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28:34 Megan: Those are wonderful words. Well, thank you Mary for taking the time

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28:42 Mary: Thank you. 

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28:44 Megan: And thank you

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28:45 Joe: Thank you, Mary. 

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28:46 Megan: Wilson and Betty.

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28:47 Mary: Thank you. 

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28:48 Joe: Thank you, Betty and Wilson.

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28:49 Mary: Thank you for having me.