Teresa Altemeyer === Teresa: [00:00:00] You know, I, it was nice of you to let me mention that, that letter that I wrote to you and I actually went back and read it last night. Vince: Yeah. Teresa: It's a pretty good synopsis of support groups and it, 15 years, it's just been remarkable. You know, you've got your 25 year benchmark, I've got my 15. Um, the extraordinary things that have happened in that group are all gifts. Mm-Hmm. And they're gifts from. You and your wife? Vince: Well, I, I, I mean, I know Teresa: you're other people fund for sure. Yeah. Elements and come together, but you have been so good with support groups. Okay. S needy to not do this because I'm Chris, come back here. Um, we just, yeah. You weren't there at the opening of the art exhibit, were you? Vince: Uh, not this year. No. Huh? Yeah. Teresa: Um, I painted a, a picture of the. Two [00:01:00] people who are in the support group who have really relied on the support group. Okay. And he went all the way to CAR T therapy. I don't know if you're familiar with that A little bit, but it's the granddaddy of 'em all. Yeah. I mean, you know, they, they destroy your immune system and bring it back up. I'd never seen such a picture of love in my life. Um, they would report back to the support group about how he was doing. He nearly died a dozen times. Yeah. Went in to see him, he had 14 bags hung, and they were balancing those with various levels of toxicity at various times. And oh my gosh, to, to see how she cared for him was something we all should wish for in our lives. Right? Yeah. Yeah. Vince: What, uh, what is his story now? Teresa: Well. As of about two months ago, uh, he was released from the hospital and he went back to Terre Haute again. Him be in constant treatment. Yeah, he'll be. Uh, more infusions at various times. So it keeps his [00:02:00] immune system strong because it's very, very weak. And, um, uh, when I spoke to the group about him and about that painting, I said, they're at home. They're in Terre Haute. Um, he is watching his grandchildren run around the kitchen island and then getting up and chasing after them. Vince: That's awesome. Teresa: So it really is awesome. It's, um, Dr. Robertson's the one who manages that program. Okay. The CAR T. Vince: Yeah. Teresa: And I love the CAR T program because it was, um, it was pretty much funded by LOS. Everybody walked away from it when there were some youth deaths Mm-Hmm. In the early nineties, and they just, they just kept funding Dr. Carl June out of, uh, university of Pennsylvania. Vince: Okay. Teresa: Like 35, 40 million. It ultimately ended up being, and if it were not for his breakthrough, you know? Right. Yeah. Vince: Well, something, something to be said for perseverance, that's for sure. Teresa: There is. Or, or, or sometimes just living on a hunch because Right. Um, that was a hunch [00:03:00] to keep supporting somebody in this field that nobody else was paying any attention to. Yeah. Vince: It's gotta be interesting because I'm sure like him, and then there's probably a hundred or a thousand other researchers who have that hunch. They go down the path and they run into roadblocks and it's like usually funding. Well that, but, but if they're running into a roadblock in terms of, you know, I thought I was gonna get this answer and I didn't, what, what triggers either them to say, okay, well that's not, it's not gonna work. I didn't go a different direction. Or do I keep pushing to figure out what the answer is? Yeah. And I'm sure that that's a probably a struggle they hit all the time Teresa: and, you know, and it's odd what can intersect because. With this little girl who was the first, Emily Whitehead was her name. The first person who they did CAR T on that was successful. She had an allergy, she was having an allergic reaction to the, the cells that they created. This is the, the treatment where they, they take the cells out of your body. Vince: Okay. Teresa: They actually, they [00:04:00] actually sent them to a, a viral production center here in Indianapolis. There are only five of them in the world. Vince: Mm. Teresa: And they reprogram your cells and they reprogrammed her with the AIDS virus Vince: and then inject it back in. And they Teresa: inject it back in. Yeah. But she was having this odd reaction and Carl June recognized it as something that he'd seen in, in a family member that was an allergy. So he started putting the alert allergy meds in, and it made a huge difference. She woke up and three days later there was not a cancer cell in her body. Vince: That's wild. Teresa: But if it were not for that fluke. How many flukes are there out there? They're a lot, probably. Yeah. They're a lot. Vince: Is this thing going? Hey guys. Welcome back to another episode of the Summit's podcast. Thank you all for joining [00:05:00] us from wherever your podcast, or if you're joining us on the Heroes Foundation YouTube channel. Thank you for doing so. Uh, while you're there, hit that little subscribe button if you haven't already done so. And the notification bell icon so it can be alerted when new episodes like this one drop. We would greatly appreciate it. Uh, today we've got a neighbor of mine and longtime friend Miss Theresa Altmeyer. I. Uh, Theresa and I share a pa common passion, which is fighting cancer and giving back to the cancer community, uh, in various ways. So, Theresa, welcome to the Summits podcast. Teresa: It's just a pleasure to be here. Thank you for inviting me. Vince: Well, you're welcome. We're glad to have you. Um, why don't you do us and our, our listeners and viewers a favor and, and provide a little background intro on yourself. Teresa: Okay. Um, in 2009, I had been having problems with my shoulder. My tennis game was beginning to fail, and I went to see an orthopedic. Was this at Wimbledon? Or after? Yeah. Well, and not a chance. Um, and I went to see an orthopedic surgeon. Okay. Uh, he was a long time friend and so they did an MRI of my [00:06:00] right shoulder and, um, the technician was sitting there in the room and all of a sudden he got up and he left. The doctor was not in the room at the pres at that time, and when he came back in, he brought the doctor with him. The doctor sat down and the doctor was crying. The surgeon was actually, had tears in his eyes and he said, um, I became an orthopedic surgeon, so I would never have to tell anybody what I have to tell you. Mm-Hmm. And he said, I am 100% sure you have lymphoma. You need to go out and find yourself a doctor. I. Fortunately in our neighborhood, Vince, there are a lot of people who work for various institutions like iu Health Community, et cetera, but I had a friend immediately across the street who was a nurse at the Simon Cancer Center. She, I called her up and she was Johnny on the spot. I mean, she immediately asked me for all the, the, the reports that have been done, the MRI, et cetera. And, um, I took them to her and she called me back within an hour and a half and she said, we have you scheduled with a doctor. We have you scheduled for a biopsy. [00:07:00] Um, it'll all take place this next week. And so then the kind of, the place where this story really begins is, um, is when I walked into the room where there were two doctors, two hematologists, I wasn't even familiar with that word. Mm-Hmm. It was a new word for me. Right? Yeah. A blood cancer doctor. And, um. They were both smiling. One was older, one was younger. It turns out that the younger one, this was his very first day of practice and I was his very first patient. Okay. Ever. And so his name was Jose Azar, and they asked me if I would. Pick at the end of the, the, the appointment if I wanted the older doctor or the young, handsome, good looking one, but the young one, Joe, say, was, was, was going to be specializing in my form of lymphoma, which was chronic lymphocytic leukemia. Vince: Okay. Teresa: Um, so. During the, the, the appointment, you know, you, you learn to read doctors. I, I wasn't a [00:08:00] good doctor reader at that point, but I, I was good enough and it's a skill and a talent that people should really work on, um, on developing. It's something we talk about in the support group, I mean, frequently. Um, but they were. They were smiling. They, I asked about second opinions, which can be a touchy subject if a doctor is sure got too big of an ego. Um, they were enthusiastic and gave me one. Um, and then they said at the, at the end of the, the, the discussion, they said, we don't think you'll be active for the cancer, aggressive for several years. So you need to go out and you need to live your life. And so that for me could wipe away all the major concerns. All the major worries that I would have about something immediately happening in my life that maybe there was a chance. Um, this is a long re this is a long answer I'm giving you. No, it's good. So, um, so I did go out and live my life and, and [00:09:00] what I did was, uh, the second appointment I came back to see the young, handsome doctor that I chose. Um, and when I came, it was this time of year, Vince October, and I grow. I'm a gardener. I grow dinner plate Dahlia. They're enormous flowers that are about 12 inches across. Okay. And they're stunning. And I brought in a bouquet for my doctor at the second appointment, uh, one for the nurse, and one for the staff. And apparently it, um, it, it just touched something in my doctor. So the third appointment he shared with me that he had just lost a patient. Um, the patient had battled CLL what I have, and on his deathbed, he said to Dr. Azar, I want you to commit to me that you will form a support group so that people don't have to go through what my wife and I did, where there was no one to talk to, no one who truly understood at a patient level, knowing we could communicate and share our emotions and feelings and [00:10:00] thoughts and wishes and dreams with. And so I looked at my doctor and I said. Absolutely I will do this and that absolutely changed my life. Vince: Yeah. Um, up to that point, what form of, um, support options was the cancer center providing patients? Teresa: Now that's an interesting subject because, um, I had been involved with, uh, a, not-for-profit, the Leukemia Lymphoma Society. Mm-Hmm. And they and four or five other, not-for-profits. It had been meeting for almost a year at that point. Okay. And what they were trying to do was figure out how to make available to people, information that could be used in a support group. This was, uh, Susan G. Coleman. This was the American Cancer Society. It was a little red door, et cetera. We were meeting because we couldn't find a place, um, at IU where there [00:11:00] was a person or, uh, an office or people Vince: Yeah. Teresa: Who could manage that information. That, that you have in a support group. And so, um, we, we were proposing to IU a cancer resource center. Vince: Mm-Hmm. Teresa: And the Cancer Resource Center was to fulfill a lot of those needs and be supportive of support groups. They were a few support groups at that time, but they were very loosely structured. Okay. Um, always with a staff person, you know, medically trained, and then other facilitators. So. Vince: What, um, when you said, yes, I, I certainly wanna do this, kinda what was the next step? How did, what was the evolution at at that point Teresa: we had. Probably seven or eight meetings. And the wife of the gentleman who passed away was involved also. Okay. And so we'd meet with a doctor, um, with Dr. Azar and Cindy and myself, and we would discuss how we thought this could be formulated. And [00:12:00] we all did a little bit of homework and a little bit of research. Mm-Hmm. And then we found out that another doctor, Dr. Cripe at, at iu, a hematologist, had been trying to put together something that would meet. These kinds of needs. Right. And so the timing was quite remarkable. Um, and so they formed something called the Cancer Resource Center, which later evolved to encompass complete life. Mm-Hmm. But we were, we were constantly looking for resources, ways to better ways to develop it. And there were probably other hospitals in the United States and medical facilities and medical centers who were trying to do the same thing at this current time. But we were really. To our knowledge, the first to get it done by bringing the not-for-profits in as full partners to try to make sure that information would get communed effectively communicated effectively, yeah. To patients and particularly in the, the support group setting. Vince: Yeah. Where were you in your personal journey when this was kind of all happening, but was it, was it all [00:13:00] going on at the same time? Teresa: Well, I'd only been diagnosed about six months previously. Okay. Um, I was, uh, I was not needing services yet. But I had some friends who had various forms of cancer and I was very interested in seeing what could be done. Sure. Um, I wouldn't need to be treated for five years. Vince: Okay. Teresa: So it was during the time preceding that, that, um, I. Mm. I worked with a support group. There was an interesting turning point. Um, once we got started, they were trying to find ways of publicizing and it would publicizing the support groups, which was pretty much just, you know, signage that was around the, the area where the hematologists are, are located Mm-Hmm. Where their offices are. Well, um. We, we developed slowly. First there were one, two people I never showed up to have, there not be anybody else there, but sometimes the count was very low. Vince: Yeah. Got Teresa: up to six or seven people on a regular basis. Vince: Okay. Teresa: And then one of them a gentleman, um, I [00:14:00] don't know if I can really name his name or not. That's fine. But it's Chuck Ballard and he, he, he died and he was from rural Indiana. He did not receive his medical treatment at iu. And he used local resources, meaning the local oncologist, not even hematologist, and it struck me to this day, I am absolutely convinced that with the complexity of many of these cancers that he might've lived, if he'd gone to a a larger institution, Vince: sure Teresa: he might have been alive and that just. Turn the flame up under me and, and, um, to try to find ways to reach people who are in outlying areas and get them involved in something like a support group. And the doctors have always been very helpful in feeding, if you will, uh, patients who appear to have a need, who wanna, who want people to talk to, who understand, uh, to be involved. Mm-Hmm. So Vince: how, [00:15:00] how do we reach those people at this point? Teresa: You know, it's, it's interesting you should bring that up because I'm about to approach IU and ask that I can be involved with something that I was involved with a number of years ago, the hematologist and all their nurses. And um, and, and this is probably the case with all the other groups of medical specialties. Once a month they have a meeting and, um. They will allow for a brief period of time. An outside speaker come in. Well, after 15 years, I don't feel like too much of an outside speaker, but there've been a lot of new hires at iu and in that context, there are people who are not really sometimes familiar or that familiar Vince: Yeah. Teresa: With what a support group is, what it does, what the whole, you know, complete life program is about. Although there is a a, a. It seems like the medical profession is sort of turning toward this more holistic approach that, where it's not just the medicine, it's your [00:16:00] whole life, right? That needs to be treated when you're, when you've got cancer. Vince: Yep. Teresa: So I'm going to approach them to do that. Um. You just, you know, there's so much that's available on the media now, and, and it's a conversation that we're going to have about how to, how to communicate that better to patients. You know, even if it's just a little byline that, that appears with regular information that a patient would receive. So. Sure. Well, Vince: if you could, um, provide some guidance. You, you mentioned how kind of this all evolved. How would you describe the program today? Teresa: Robust. Okay, good. Um, again, my perspective will come through, as you can tell already, the Blood cancer support group. Vince: Mm-Hmm. Teresa: Um, we, we generally have between nine and 15 and sometimes as many as 20 people. Vince: Okay. Teresa: Who will attend? Um. I modified it so that it wasn't always just the patients speaking to each [00:17:00] other. There's always time for that. And there's always time for somebody who has the most immediate need. Sure. And is there specifically that evening because they wanna share it. But I brought in so many resources from across the med center. They're just fabulous resources. Anywhere from, you know, yoga, art therapy, music, therapy. Um, there are people who are studying specific. Topics within the cancer field. Okay. Like fear of recurrence, um, issues such as that, that, that are mentally staggering for a lot of people. Mm-Hmm. And there are dozens of those issues. And so the support group is extremely helpful for people getting perspective in that regard. Vince: Yeah. How many individual groups are there now? I mean, you mentioned the blood cancer group. Are there I Teresa: believe it's 10. 10. Okay. I believe it's 10. Um, some are. Oh, this will sound very odd, but some are more robust than other. Sure. If you look at head count, but that doesn't have very much to do [00:18:00] with the purpose and the success of a group. Sure. Um, for instance, there's a, there's a neoblastoma or brain, um, cancer support group. Those people didn't generally die within six months. Yeah. And I was stunned. When the gentleman who wanted to start it came and sat in on our support group to see what it was like and what it was about. Because what a kind and generous thing to do to look beyond yourself when you know what your fate is inevitably, right. It's remarkable. So, um, multiple myeloma, um, there's, there, and this is very important, there are, there's a support group for caregivers because they often get. Written out of the picture. Sure. When, when Mike asked Dr. Azar to form this group, Cindy talked to me afterwards, Mike's wife, and she said, I felt like I was an invisible person sitting in the corner, that I didn't even [00:19:00] exist in the context of everything that was happening. Right. And so. There are many people who come to the groups who are caregivers. Yeah. Vince: Which excuse, which we know caregivers are, um, hugely important. I mean, yes. What a role. Uh, we've talked, uh, to several and I think. Those of us as patients know that a good reason why we're here. Sure. It's because of the care we received, but not just the medical care, it's the care of the caregiver at home. A hundred percent. Teresa: Yeah. That, that is absolutely the case. Um, you know, one of the things we talk about in the support groups, our com is communication. Vince: Okay. Teresa: We've had sessions where people who actually study this at IU have come in and talked to us about how you can most effectively communicate with your doctor. With your family? Mm-Hmm. With the caregiver. Um, a lot of emphasis on, on, on the caregiver and the doctor mostly. Um, [00:20:00] I had an interesting conversation with, with, uh, Dr. Azar once I said, why are. The doctor's sometimes not talking more about the support group, and he said you have to always understand somebody else's frame of reference and where they're coming from. He said, in the case of me being a professional doctor, I'm listening to what the patient's saying and I'm thinking about do they need treatment? I. What's the next step that we need to take? Are they really relapsing? Do I have my diagnosis right? I'm not thinking about the fact that they may go home. They've only seen me for a half hour and they have to live the rest of their lives. Vince: Mm-Hmm. Teresa: With questions they wish they could have asked, asked a doctor but didn't know how to ask. Right. Or didn't know when to ask them or hadn't thought about asking. We talk about those kinds of questions in the support group and it's very valuable, the caregiver. That's, that's interesting. Um. What do they say? Something like 40% of all cancer diagnoses end up in divorce. Oh, wow. It's, I [00:21:00] haven't heard that. Vince: But that Teresa: it's some stag, whatever it is. The statistic. It's a staggering statistic. Yeah. So you have to think about how you're gonna approach your, your other in your life, whose life is now just as radically changed as yours. We've, we found out recently, actually it was last week, that because I've had, um, uh, one particular form of treatment, my, my immune system is pretty shot. And we had a fabulous Viking cruise planned and we were gonna go transatlantic, and it was just gonna be incredible. Well. We talked to the doctor about it and he said, do you really wanna be out in the middle of the, the South Atlantic for 10 days with absolutely zero medical facilities if you need something with a compromised immune system? So we canceled and you know, the look of disappointment on my husband's face. He, he tried to, you know, bucket up and not, you know, not go damn. Once again, we've we're backing outta something Vince: right. [00:22:00] Teresa: It was really hard for him. So the caregiver gets caught in a life that changes just as radically, but in different ways as the person who's got cancer. Vince: Sure. Yeah. Agreed. Um, how would you, how would you rate, if you will, the Complete Life Program as it stands today? From what, where we saw it 10, 15, 20 years ago? Teresa: Oh my gosh. Oh my gosh. Um, uh, 10 or 15 years ago, they were just trying to figure out. What to do and, and what was viable. And it was, and it was simplistic in its forming that, you know, if you had breast cancer, you got a wig, you know, and, and, and, and that's wonderful. And that's very important. Don't, you know? Right. But it's just so much more sophisticated when the, um. Uh, there's a, there's a gentleman named Brian Boer. Dick. Vince: Mm-Hmm. Teresa: And, um, the art therapy program made a profound change in this man's life. He had, he lost his tongue. He lost a portion of his throat to cancer, [00:23:00] so he cannot speak, but he has chosen through what he learned through art therapy to speak through his art. And it's just. A beautiful thing to witness and it speaks to the sophistication of, of art therapy and music therapy. And, you know, I was one of those people, I'll just be honest with you, I thought, I don't need a counselor in my life. Why would I wanna do that? It seems very superfluous or, or fluffy. It's not. Um, I am an artist and it's a, it, it's a linear. It's a linear form of thinking. There's something called cancer chaos in the brain where you, you, you think piecemeal and spotty and all of these services tend to improve your linear thinking and make you more viable with what you're dealing with. Vince: Right. That spot on, because I remember the very, and it's very early stages when they were trying to figure out like what, what all would comprise this program and what. Can actually benefit and [00:24:00] the, the hospital wasn't like funding it at all. They're like a couple doctors had this idea, will you guys. Make it a pet project, try it out. Let us know what you find out. Um, to your point, different strokes for different folks. I mean, yeah. You know, I may find a great benefit in, in this component of it and someone else, it may not matter to them at all. And then that's right down the line. It's like, for me, music therapy, granted I was, I was 26 and this girl comes in to play the guitar and I was just, I don't know, to me it felt weird. But she goes across the hall and the next person, it might have like absolutely changed her outlook. That's right. And made their day. I'm like. Teresa: That's right. Perfect. That's, that's rights. That's all Vince: we need. Um, Teresa: and one, and one of the newer components that they've added is this MOVE program, Vince: right? Yep. Teresa: And that is absolutely fascinating how there's seems to be more research that that is determining that how healthy you are before you. Get your cancer, um, will do great wonders for sustaining how you do during your treatment period. People knew that it would help [00:25:00] during it, but they didn't realize that that how fits you get yourself ahead of time is a wise thing to do for sure. So theoretically, let's say you've got three people in your family who've got breast cancer. Work out, be ready. I mean, statistically, you know, it's, it's gonna happen, Vince: right? Yeah. Or could Teresa: happen. Vince: Correct. Yeah. Uh, we've been very happy to, um, help support the MOVE program as well. I thought it, it, it made a lot of sense, not just for folks going through the process, but. At the same time from a prevention standpoint too. Yeah. I mean, it, it can't hurt. Um, certainly it helps, um, helps get us in better shape, keep us in better shape, not just for, from a, uh, potential anti-cancer perspective, but, you know, heart health, lung health, et cetera. The whole Right, the whole shebang. Um, you mentioned Brian Boer Dick, so interesting and enough. I saw some of the, um, artwork that was on display, uh, at the most recent, uh, complete Life program, art, art show. And I saw one of the paintings. Didn't know who it was from, but I [00:26:00] saw it. I was like, oh, wow. Something about that one I kind of, I really like and I don't know anything about art. Just, you know, whether I like it or I don't like it. Um, and I was like, man, what, what are they gonna do with that piece? And I think I asked Cindy this or asked somebody and they're like, I, you know, I don't know. I could, I could find out. I said, okay. And I left later, found out it was one of Brian's pieces. So I had his email from maybe a year or two prior. So I found it, Sean, him a quick email and said, Hey Brian, I don't know what your plans are for this piece, but I would love to buy it or do something with it. And so he immediately, he came back and said, oh yeah. He goes, I would, I would love for you to, to put it on display. And I said, okay, well, you know, tell me what you want for. He is like. Yeah. Nothing. Yeah, just the fact that you want it. Um, just do me this favor. He goes, share the story, share the story about the program. I'm like, oh, done. That's easy. Um, so I look forward to, to putting that up. Teresa: Y you know, um, one of the wonders about the Complete Life Center is that my husband has a saying, chance comes to the prepared mind [00:27:00] and the more informed a patient can be. The better off, I believe their end result will be because they learn things like. Um, how to ask the right questions when you go in and see a doctor. What's really I important about your disease? Well, there was not a central repository that existed for this kind of information, even though there were tons of brochures and a dozen, dozens and dozens of, I mean, hundreds and hundreds of pieces of literature that had been carefully vetted. I mean, this is by the American Lung Association, American Cancer Society, uh, leukemia Lymphoma Society. The list goes on and on and on and on. Now they have a repository. It's like you, it's like a library. You can, you go into at the Cancer Resource Center and you can get answers that will help you all through your journey. And before people just. Didn't even know that it existed. They didn't know about those organizations. So just the fact that you provide support for that, that [00:28:00] center, you benefit so many forms of cancer and you benefit the other not-for-profits in doing their job too. Vince: Yeah, for sure. I know we share the same, uh, mentality that while we both had a blood cancer, um, and it would've been really easy us for us to focus on that. We also know. A hundred other people had a hundred other forms of cancer. And to us, like I just, I just hate cancer in general. Yeah. Um, I'm not biased towards any, any one. Um, you know, I've had friends pass away now from, from brain cancer and, and all kinds of other things, and so I just, I just hate the disease in general. Yeah. Um, and I, I know you share the same feeling. Um, when, when I look at other cancer centers now, whether it be other ones here in Indianapolis or Chicago or Cincinnati. 20, 25 years ago. It What? None of, none of, I won't say none of them, but most of them did not have this Cancer Resource Center Complete Life program type of thing. That's correct. Today it's more commonplace, otherwise, I'm sure some are more robust [00:29:00] than others. Yeah. Um, for when I, Teresa: I, I, I. When I had my first appointment with Dr. Azar and I asked about a second opinion, he gave me, um, a name of a doctor in Ohio at the James Cancer Center who had eventually that doctor moved to Cincinnati, but I was always. Stealing their literature and bringing it back and trying to put it under people's noses so they would see what the programs were that these other people were doing. Sure. Because, because the, the resource center initially on was trying to manage its own self and yeah, it would look outside of its own arena a little bit, but they were not really researching what they were gonna do. And so, um, they've put it together beautifully. Vince: Well, it's good. I mean, there's no sense in reinventing the wheel, if that's right. If someone else is doing something that's right. And, you know, they're being very, very successful at it. How do we replicate that? Right. If we wanna modify it in our own way, so be it. But there's no, no sense in starting from scratch. That's great. Um, how would you describe the program today? And then what do you think [00:30:00] it might still be missing? What can we, I mean, there's always room for improvement. What can we do to, um, uh, further benefit the center going forward? Yeah. Teresa: Good question. Um, you know, they've introduced something called the Simon sis program at, at, at, um, at the Simon Cancer Center. And what they do is they cover various topics. Um, they did, it tends to be very disease oriented and it's really excellent. But it would be nice if there was a series that was. Literally the Cancer Resource Centers series where they, they, they bring in these phenomenal resources and phenomenal researchers who are looking at all these. Alternative ways to deal with your cancer. I mean, they could, of course, cover cancer specifically and specific diseases, but it would be tremendous if they, if they had like their form of a lecture series for, for the more holistic medicine. It, it would, it would really be very, very [00:31:00] valuable. Vince: Okay. Teresa: Extremely valuable. Those are the people I've had to go out and try to recruit and find, uh, at the re institute or elsewhere to, to come and speak to, to the patients. Yeah. In the support group. Vince: What? Would you say of, of those that you surround yourself with in the support groups, what are their biggest need or biggest needs? Teresa: It's been really interesting. Lately, there's been a, a huge outcry for mental health. Vince: Okay. Yeah. Teresa: For mental health resources. Um. And fortunately, um, the, the woman who co-facilitate with me, Michelle Hoy, she's actually unfortunately going to be moving on because she's gotten so involved in this very specific area and the studies that are being done and the actual clinical trials, all of this is free of charge, um, that are highly supportive of, of mental health initiatives. And if there could be a mental health program. A two or three series it, it would really, [00:32:00] really benefit a lot of people. Vince: Okay. What would you say are the biggest mental health challenges these patients, and maybe even the caregivers are having? I, I can think of several, but Teresa: Oh, it's anywhere from lack of understanding, the implication of their disease, lack of understanding, the statistics of revolving their disease. Yeah. Some people are very, very fearful, and not that they won't always carry fear and there isn't some reason for fear, but they don't need to be as fearful as they are. Yeah. Um, fear of recurrence is always an enormous issue. Yeah. That people are, they have a, any, a twitch, a tweak, you know, anything they, they are, they're running to the doctor to try to find out what it is. Yeah. Some legitimacy in that, but there's, it's often an overreaction. Um. There's, there's, um, a fear of the language, and this is particularly notable. Um, I mean, my group works at its [00:33:00] highest level when we have a new person come in, Vince: okay? Teresa: Because they know how to take somebody who's crying and they usually do cry with the group. Somebody who's a man who's never cried in front of other people he doesn't know before. Um, and when they leave, it's not that they've got a huge smile on their face, but they are. Understanding far better where they are, what they can do, how they can get help, um, other issues that they may want to consider. Vince: Mm-Hmm. Teresa: Um, oh gosh. There's, there's, Vince: well, you guys are, you guys are providing that warm blanket. Teresa: We are. Yeah. That, that's, that's beautifully worded. I never thought of it exactly like that. And Vince: even for folks who are then on the other side, um. I know I've experienced this from time to time where someone I know then loses their battle. You can have some, you know, they call it survivor's guilt, and I think it hits people in [00:34:00] different ways. To me, it, it hits a couple different times, like yeah, I think on one hand it, it for just further en rage is that fire, it made it keep doing what we're doing, but at the same time, there's also part of me that says, why, why am I the one who's fortunate enough to get through this and to continue on? And, and my roommate from senior year in college didn't. Yeah. Like, I can't, no one can explain that, but it, it bugs me. Teresa: It bugs me too. Um. I, I often tell people that the last 15 years since I was diagnosed have been the very best years of my life because, you know, you, you wander around and, you know, as a female whose husband could be the single income earner for the family. I had lots of free time, but I was raising two children. But I did lots of volunteer work and it was, it was. Lovely volunteer work and I benefited any number of causes, but it wasn't like what I eventually evolved to, which was working with one of the not-for-profits. And, and as a [00:35:00] vol, as a volunteer, I was the board chair and, and knowing that I saved lives, knowing that lives were being changed, knowing that people were finding the right, right resources, knowing that we kept people out of. I don't wanna say harm's way, but we got them to the highest level of medical professionalism to get the right answers for them. I mean, it, it goes on and on and on and on. What we were able to do, and you know, I look at what you've done, you know, supporting research now, um, in addition to, to. To the Cancer Resource Center and the Complete Life Program. It's just remarkable. I, you know, I, I was tapped by a doctor. I don't know if somebody tapped you, maybe it was your wife and your conversations or whatever, but I find it absolutely remarkable. I never in a million years, for all the impact that I've had, would've. Ever thought to start a foundation? Vince: Yeah. Teresa: Are you crazy? Vince: Apparently, yes. You Teresa: know? Yeah. I mean, it, it, it, it, it just, [00:36:00] it, it's amazing. Vince: Yeah. Um, it's funny you mentioned that because I mean, I, I say this story now, I mean, we we're 24, finishing our 24th year, and I don't, I don't shy away from this. There have been many nights where we laid in bed and said, oh my God, what do we get ourselves into? Yeah. But I think. Even in those times, especially high stressful times around events or, or what's, whatever's going on, there are more times where we, we, we say, what more can we do? Um, there still isn't enough. You know, we're still having people that we know just in, in our close circles who are being diagnosed and, uh, sadly aren't, aren't making it through. And that. Yeah, that's what keeps the fire burning. Um, you know, I mentioned to you before we started this episode that we had, uh, recorded another episode earlier this morning, and, um, you know, early twenties, um, daughter of a friend of mine diagnosed with stage four lung cancer. Like, w why, like, that makes no sense. And it, you know, keep my language clean, but I, that makes [00:37:00] me very angry. Teresa: You know, you talk about your inspiration. Um. I have a friend, I had a friend who was diagnosed with stage four lung cancer, and she lived longer than any other patient on Tarceva in longer than anybody in the world. Okay. So people were continuously coming to, to see what this woman was doing, right. And what she was doing was working with some of the, the, the doctors at IU and formed a program where she went out and she'd spoke to. Hundreds and hundreds and hundreds and hundreds of schoolchildren about the dangers of smoking. Vince: Mm. Teresa: She spent 11 years of her life doing that, and the impact was enormous. Yeah. And she was a dear, dear friend, and she invited me to go with her. I saw what this was like, what that whole experience was about, and she was the person who let me know it was okay to do this and that you really could make a difference, that it could really be meaningful. Vince: Right. Teresa: And that's what you've done. You know, you've [00:38:00] had your, your muses also. Vince: Yeah. Thank you. Um, certainly haven't done it alone. We've taken people like yourself. Uh, you and your husband have been great supporters over the years of, of us and, and just all the friends, family, and I think the community that we live in, it's, it's pretty special. I mean, we, we talked about attitude, but we also talked about that. Um, oh, what's the term about raising a child? Like it takes a, it takes a village to raise a, a child, like same difference. It takes a village to surround themselves and support. Um, others that are in need and whether it's a cancer diagnosis or, or what have you. Um, the community that we live in, just in Indianapolis in general, but in particular, I know our neighborhood, um, has been very supportive of one another. And it's, um, when you live there long enough, you're that network 47 and grows 47 Teresa: years. Yeah, Vince: we, we talked about this earlier and especially in another podcast on the business side, but we say, you know. Not only don't burn a bridge, but if you're trying, you need to really develop your network because in Annapolis, you're really only two people away from [00:39:00] whoever you need to get to. Right, right. And most people are, are generally open to helping you find that connection that you're looking for. Right, right. I mean, I think in, in this world and in, in the cancer community that, um, that really holds true. And, and so it's, I don't wanna say it hasn't been easy, but. It, it's been easier knowing there are many hands who are here willing to help and who have the same, uh, the same passion and want to see the same end result. Teresa: Um, so we're very thankful. Well, I, I, I do believe that there's a reason, there's a key, key factor, why that all works that way, Vince. And it's worked that way for you. It's worked that way for me. It's worked that way for your wife, and that is because of your sincerity and what you're doing. Yeah. And people see it, feel it, know it. This is life's at stake. This is not, this is not a, a casual dalliance and raising money for, you know, some inconsequential thing or some inconsequential service. This makes a difference. And they know that you [00:40:00] are sincere. Yeah. And from the heart. Vince: Yeah. Well, thank you. We appreciate that. I mean it, what else would you like to share? Teresa: Oh gosh. Uh, we've talked about a lot of things. What else would you like to know? Vince: I guess what I would, probably, my last question for you would be, um, you've been doing a lot of things in this realm and been doing it for a while. Uh, we, we've mentioned this a little bit earlier. Would you say you're any less passionate today? Oh, no. We may be more tired on occasion, but are we any less passionate? Teresa: No, we're not. Yeah. 'cause the mission goes on, right? I mean, there continue to be. New diseases, new drugs, new new opportunities, new it. It's just a constant evolution, but it's, it's important work. Mm-Hmm. It has to be done. I, I think the voids that would be out there, all the people who've, who've had these wonderful experiences through the support groups, et cetera, if it were not for the Heroes Foundation and [00:41:00] others, but you guys, notably with that program in particular, and with the art program, the void would be enormous. The void would be huge, and those lives would never had the chance to have the experiences that they've had and the change agents that they've had. So, so grateful to you. Vince: Well, thank you. And we're grateful for folks like yourselves to help, um, help these programs, uh, gain life and expand and, and have the impact that they've had. Um, I, I think in, in some respects, we, we've just done the easy part and helped, you know, provide some funding to get them going, but it's, but it's you all who had the ideas and, and the wherewithal too. Really support them and, and manage them and push them. That's, that's why they are what they are. Teresa: You know, I heard something this morning that's a vision of success. Um, I, I had breast cancer also, and I have Parkinson's, so I go to the neuroscience center and I'd been talking with them about, repeatedly with the doctors and, and others social workers that they don't have some of [00:42:00] these kinds of services available. And I just found out earlier today that the, the art therapist is now going to be working. Through the therapist, the cancer resource, the, I'm sorry, the Complete Life Program, um, at Simon, um, for the neurology patients. Okay. For their issues and their needs. So I think it's just one sign of steps that are being taken, right? The power and the, and the, and the effectiveness of what the Cancer Resource Center and the Complete Life Program are. Vince: That's awesome. Teresa: So yeah, I was, I was thrilled. You know, I love art. Vince: Yes. Teresa: I, I am. I love art. Vince: That's great. That's great to hear. And, and I think that maybe that's just one, one tipping point to it is provide further services to those folks and, and, and spread from there. Teresa: It is. When they were starting a support group in the Neuroscience center, I went to that and they didn't know about the Complete Life Program and they were trying to bring up a program and I was just, all the resources are there. Vince: Yeah, they're all Teresa: there. Just go talk to 'em. Vince: Awesome. Well said. [00:43:00] Well, Theresa, we appreciate you coming in today. We appreciate your time. Uh, we appreciate you sharing the story, your personal story, but also the story about, um, those different support services and how impactful those are for cancer patients as well as caregivers. Teresa: Well, thank you. You're welcome. Thank you for what you do. It's been a pleasure to be here and talk to you. Vince: Thank you and thank all of you guys for joining us on this episode of the Summits podcast. We appreciate your time as well. Uh, if you have any comments or questions, maybe about how a support group has benefited you or conversely how you might learn more about the support groups that, uh, either the IU Simon Cancer Center or other cancer centers, uh, hit us up in the comments, we'll be happy to try to answer as many of those and point you in the right direction. We greatly appreciate that. Um, and don't forget, folks beat [00:44:00] cancer.