In this podcast episode, Beth and Jason share their journey through Jason's diagnosis and treatment of gastric cancer. They review the 2nd opinion process toward the beginning of this episode. Toward the end of this episode, Jason and Beth go into the benefits of confidence in treatment decisions and shared decision-making with their oncologist having an expert 2nd opinion enables.
Jason gives us a glimpse into the startling experience of cold sensitivity when inadvertently sipping iced tea after receiving his first infusion of the chemotherapy Oxaliplatin.
Beth and Jason talk about adapting treatment schedules for quality of life and the value of support from specialized cancer organizations. They highlight how maintaining normalcy, such as continuing to work and exercise, has been a coping mechanism for Jason. The couple also discusses the significance of advocating for oneself in the healthcare system, the impact of the diagnosis on their family dynamics, and their approach to making the most of their time together by prioritizing their relationship and experiences amidst the challenges of cancer treatment.
For those watching this episode on YouTube, we get a glimpse of Beth’s book narration studio.
Thank you for listening. We would love to hear your thoughts about this episode. We want to hear from you: what topics you would like to have discussed or a guest you would like to see featured in future episodes. This show is here for you. Email us at EverythingCancerPodcast@gmail.com
The information on this podcast is not intended to be used for medical advice. For any health care concerns you have please consult with your healthcare team. The staff at Everything Cancer podcast will not be answering health individual health care concern questions.
Consider giving your support for ongoing content and interviews for this podcast through our Patreon Page for Everything Cancer or the Everything Cancer website.
Our sponsor: H2Ocean - makers of quality sea-salt products for over 20 years!
www.H2Ocean.com
www.Chemo-Mouth.com
Sea Salt Healing Rinse
https://h2ocean.com/oral-care/
Here is the link for the acclaimed cancer self-advocacy guide by Jill Squire, host of Everything Cancer Podcast
"Cancer Journey Guide and Journals: Empowerment in Diagno...
In this podcast episode, Beth and Jason share their journey through Jason's diagnosis and treatment of gastric cancer. They review the 2nd opinion process toward the beginning of this episode. Toward the end of this episode, Jason and Beth go into the benefits of confidence in treatment decisions and shared decision-making with their oncologist having an expert 2nd opinion enables.
Jason gives us a glimpse into the startling experience of cold sensitivity when inadvertently sipping iced tea after receiving his first infusion of the chemotherapy Oxaliplatin.
Beth and Jason talk about adapting treatment schedules for quality of life and the value of support from specialized cancer organizations. They highlight how maintaining normalcy, such as continuing to work and exercise, has been a coping mechanism for Jason. The couple also discusses the significance of advocating for oneself in the healthcare system, the impact of the diagnosis on their family dynamics, and their approach to making the most of their time together by prioritizing their relationship and experiences amidst the challenges of cancer treatment.
For those watching this episode on YouTube, we get a glimpse of Beth’s book narration studio.
Thank you for listening. We would love to hear your thoughts about this episode. We want to hear from you: what topics you would like to have discussed or a guest you would like to see featured in future episodes. This show is here for you. Email us at EverythingCancerPodcast@gmail.com
The information on this podcast is not intended to be used for medical advice. For any health care concerns you have please consult with your healthcare team. The staff at Everything Cancer podcast will not be answering health individual health care concern questions.
Consider giving your support for ongoing content and interviews for this podcast through our Patreon Page for Everything Cancer or the Everything Cancer website.
Our sponsor: H2Ocean - makers of quality sea-salt products for over 20 years!
www.H2Ocean.com
www.Chemo-Mouth.com
Sea Salt Healing Rinse
https://h2ocean.com/oral-care/
Here is the link for the acclaimed cancer self-advocacy guide by Jill Squire, host of Everything Cancer Podcast
"Cancer Journey Guide and Journals: Empowerment in Diagno...
Hi everybody, welcome to Everything Cancer Podcast, the extra large suitcase of the cancer journey. I am absolutely thrilled to have Beth and Jason here with us today. Jason, why don't you tell us about your journey? Ah, well, about 10 months ago now, I was diagnosed with gastric cancer. And my only symptom was that I was getting full really quickly. Like, I just couldn't eat very much before, you know, you get that feeling like you ate too much. And I kind of let it go for a while because I have a hiatal hernia. And I thought it was just the hiatal hernia getting worse and kind of restricting at the top of my stomach, which can happen. But I finally went to get an endoscopy and found that the endoscopy results were that I had five ulcers, bleeding ulcers. no symptoms of ulcers. It was very strange. No symptoms of ulcers. I didn't have any stomach pain except for that full feeling. And so she biopsied and one of them came back as gastric cancer. And that was, that was of course a shock and kind of a world crashing in on itself kind of a feeling. Yeah, I bet. I bet. So that kind of just rapidly put us on this path of being referred to an oncologist and discussing options and getting more testing and determining what exactly what type of cancer it was, what cell type it was, and what options were available in terms of chemotherapy. And fortunately, The type that I have is also responsive to immunotherapy. So I've been doing both chemotherapy and immunotherapy. And then I have a friend, a senior colleague at work who through his church actually knows a person who works at MD Anderson. And so he actually was the one who pushed me to get a second opinion. And I also had another colleague at work who... whose sister, you know, is at a cancer journey and that was the place that he pushed her to go to initially. And so between the two of them, it's, you know, I was able to reach out to the doctor that my colleague knows and ask, you who would he suggest at MD Anderson for gastric cancer? And he, you know, he basically suggested the... the longest tenured gastric cancer doctor at MD Anderson. And so the thing about MD Anderson is it's a research facility. So doctors aren't always in rotation to see patients. Sometimes they're actually doing research and not seeing patients at all. So I was fortunate that I was able to get in with this doctor and have been going about every two months. to MD Anderson. And so going back to the first part of my journey, we had to get a PET scan, which I'd never had a PET scan of MRIs, but never a PET scan. And so I had to get a PET scan initially. And kind of a funny thing about MD Anderson is we got an appointment with MD Anderson, which was incredibly easy. system for getting new patients in is very efficient and vast and so that was that was pretty impressive. I didn't really expect that. So we went to MD Anderson and saw the doctor for the first time. At first we were seeing his physician assistant and it's so funny because we got these local PET scans and the disappointment on the face of every, literally, it didn't matter if it was a nurse or the doctor, the disappointment on their face when they saw these PET scans because their equipment is so much better. And they're just like, man, we'd really wish we could see more basically is what they were getting at. And it was clear, it was just, that was funny to me. So ever since then we've had. He ends at MD Anderson. That's an interesting point that you make about the resources available at one cancer center versus another. And so sometimes people get frustrated when they can't go to have their advanced imaging, such as CT scans, MRIs, PET scans at their local facility, and their oncologist or their oncology surgeon is saying, but ours do such a better job. And yeah, it can be really hard to get that ride there when it's long distance away. And yeah, it can be really hard to get scheduled with your work schedule and your kids schedule, but it does actually make a difference. And. able to show us after his second PET scan, which was at MD Anderson side by side. And we were like, whoa, it was just so much. You didn't have to be a radiologist to see it. It was obviously a better image. And so that's a really good point also to bring up for our listeners to say that that second CT scan at MD Anderson is being denied by your insurance to say, but the oncologist at MD Anderson said that the definition isn't high enough and they need that for decision making and to ask for a medical director to review your case and put it forward, you know. his case, they were able to use the initial PET scan because they were using so many other types of procedures as well to get him staged. And so, you know, they were able to use it. And then a couple of months later, when it was time for PET scan number two, he just started doing all of them there. But what he's done is we don't go to MD Anderson for all of his treatment. And I think that's something a lot of people aren't aware that, when you go to a second opinion, it doesn't necessarily mean that you're switching to that person for treatment. So what we do is he does all of his treatment locally because it's infusions. They have access to the exact same infusion medications as MD Anderson. It's the same treatment he would be getting there. And MD Anderson is a three hour drive for us. So it would be really difficult to go there every two weeks when he's still working. We're both still working. But. We go there every two months at first, now it's every three months for scans and advice. And then he does all of the rest of his treatment and advice locally. And that's been a really good balance for us without having to, it's really not an either or, it's a both and, and that's been really nice. That's such a great point that you brought up, Beth, and thank you. Oftentimes, you can get the second opinion that is a few hours away and the advanced imaging that is a few hours away that the second opinion is involved in research and really knows the cutting edge of what's happening. The advanced imaging is a little bit finer, but they can then recommend that treatment to your local oncologist to follow. And that's often what does happen. The only time there's a significant difference is if there's a clinical trial that you're involved in that's only given locally at that larger cancer center. And then for our listeners, second opinions, you don't need to know somebody. You can call your insurance company. You can look up NCI, N as in Nancy, C as in Cat, I as in Ichabod, NCI Designated Cancer Centers online, and then call your insurance company and see which one of them would be in network. for a second opinion and go there. And as Jason mentioned, also go to oncologists that's been practicing in the type of cancer you've been initially diagnosed with for a long time. And that is something that several support organizations such as the American Cancer Society and other ones recommend to go to for a second opinion to make sure that your second opinion is from someone who can really give an ultra strong second opinion. Jason, do you know if your case was and you yourself as a person were presented at tumor board at your local institution or MD Anderson? Anderson I think at least twice. Wow. So what's your impression of how the tumor board works? My impression is that it's a bunch of doctors getting together in a room and discussing cases. They probably discuss a lot of cases. But you have specialists from the various specialties. And so there's a radiologist there, and there's a cancer surgeon there, and it's different. different doctors who look at the scans, who look at the information at hand, and then offer their opinions as to what's the best course forward. How do you feel that going for your second opinion and then working with MD Anderson every few months, how do you feel that that has changed your plan of care? I don't know. I think it's definitely advised the plan of care. I don't know. would have done anything really differently. For the most part, the two have just agreed on the treatment. The only disagreement has been the last recommendation was to, from MD Anderson, was to stop chemotherapy altogether and just do immunotherapy once a month. And my local oncologist's opinion was to... continue both the 5 -FU and the immunotherapy because there's research that shows that they work together and as long as you're not, you know, your body's tolerating it and there doesn't seem to be a toxicity issue, which is what AMD Anderson specifically suggest continuing. And so because I have tolerated so well, I actually... over MD Anderson just because it's to me it's more conservative and and if it comes down to me being able to handle more chemotherapy it just seems like why not why not do that. Well and there was one other time that they slightly disagreed so one thing we didn't know going into stage four he has stage four cancer so one thing we didn't know going into that treatment is that you start off with a bunch of medications and they do tend to taper them off because your body can't handle that much medication long term. When you're looking at long term treatment, which is what comes with metastatic or stage four, they're trying to like hit it really hard and then get you to maintenance that you can tolerate for a long time. And so when he'd been doing treatments for a few months, his local oncologist felt like eight cycles. which is 16 weeks, eight cycles of oxaliplatin, which is a strong chemotherapy medication, was sufficient. And his MD Anderson doctor wanted him to try for 10 before taking that medication away. In that case, he ended up going with the MD Anderson doctor's recommendation. So I think for us, it has actually been comforting how often they agree. But we've also really, because it tells us that our local oncologist knows what he's talking about. But we've also appreciated that we have options and options are hard because you're like making these decisions that affect your life and your health. But have when they disagree, like sometimes that's a positive because it just means you have two really good people giving you two options and then you get to choose the one that feels best to you. And, um, and even though, yeah, the MD Anderson doctor is one of the top specialists in the nation. It felt best to Jason. to go with the local doctor's advice in that particular case. And so that's what he did. that brings me to two points and I don't want to forget the second one which I also have in my notes Jason is what you've done to be able to tolerate the treatment and so thus be able to stay on the 5FU. But what you're describing both of you, the first point I want to bring up, what both of you are describing here is shared decision making and that's so important. So you're getting all of your facts together, you are making an informed decision and you're working with your oncologist in that informed decision. And shared decision making is something that people, if they have the right information in front of them and they can articulate their thoughts, which journaling really does help with in articulating your thoughts and bringing your questions to your doctor, that shared decision making, as you've described, helps you feel a lot better about the treatment that you're entering and continuing to have. And I really like how you describe that. And that's a cap... That's a pillar of self -advocacy on the cancer journey is the shared decision-making and making sure you do have good information. So Jason, you talked about your oncologist at MD Anderson having concerns about the toxicity of 5 -FU and your tolerance of it and your local oncologist saying you're doing fine. So can you describe to us what you've been doing to take really good care of yourself to be able to tolerate the 5 -FU? So before I started chemotherapy, before I knew about cancer, I was, I really this year in particular, now last year in particular, I had really gotten on a good regime of going to the gym. And so I was doing a spin class at 5 .30 in the morning, twice a week. I was swimming. hahaha And one of the things that actually got me to finally look more into what's going on was the year that I got my diagnosis. I had gone from like 185 in December to 164 in June. And the funny thing was it didn't really affect my workouts. So I kept doing the same stuff that I was doing. And so I get this diagnosis and, and so now I have to have laparoscopy and I have to have a port placed. And so that totally messed with my ability to work out for a little while, but I essentially, you know, was asking the doctors, I mean, you know, when can I start exercising again? Because it had become a really important part of my life and I was, and I was feeling so much better. I had more energy. Mm -hmm. it was a good place to be and so as soon as I could I got back to spin class and then as soon as I could I got back to swimming and so I've continued to do that you know three to four days a week of course on a chemo week it's it's a little harder to get more than three days in but I just gotten into the habit of You know, on a chemo week, I'd go to spin on Monday morning. And then when I was doing Tuesday infusions, I would go swim 1600 meters on Tuesday morning before infusion. And then, you know, I wouldn't really be able to do anything the rest of the week. But then Monday, I would start over again and I would just do a normal week. And I don't know why I figured this out really late, but we moved my infusions to Wednesday. And so now I can go to spin on Monday, swim on Tuesday, and go to spin again on Wednesday morning before I get three days in every time I have an infusion week. So I don't lose that extra day. I wish I had figured that out about eight months ago. Well, but what you're describing is working with your treatment schedules so that you can have an optimal. quality of life and feel really good. And that's really important. And it may have taken you eight months, but also maybe you didn't feel comfortable at the beginning, changing your treatment schedule or asking to change it or however. So and then for our listeners, if you're not an exercise person before you were diagnosed, you can start out with gentle exercise, such as chair yoga or as long as your doctor releases you regular yoga, taking walks, but anything that's getting your body moving makes a difference. And it helps, as Jason described, combat fatigue, which is huge. But that exercise does really, and it helps you sleep better too. And it helps reduce stress, as you talked about, because you just said you didn't feel quite the same until you started exercising again. That stress reduction feeds into decreasing fatigue. Helping you do better with your treatment because you keep those cortisol hormones down when your stress level is down so you feel better and also your treatment they show through a couple of studies. Actually, you do better with treatment and fatigue which is a big thing that a lot of people on the cancer journey at any point fight. Exercise does help. Yes, definitely. And it was definitely different. Oxaloplatin is horrible. And that's what gave me all the really noticeable side effects. I think I've been, from what I understand of other people's experience with chemotherapy, I've had it pretty easy. And I attribute that, at least some of that, to... I'm not really in the normal demographic for this particular cancer because mine is a genetic result. So you're younger. I'm younger. I was already, you know, I was already, you know, staying, keeping healthy and fit. And so I think my body was just... Initially more prepared for the onslaught of all these different drugs that there's these poisons essentially that are pumping into your body then then probably most people are and and I really feel for people who Don't have my experience and it's just a horrible thing. I've never experienced nausea. That's I think probably amazing that I've never experienced nausea because they give you anti nausea meds first thing, but they've worked really well for me. I you bring up a point there. It's not that you didn't experience nausea. It's that you were given nausea medication and you've been using it according to how they told you to do it and keeping it under so that you don't feel it. Right. And it's just been the infusion that they give me at the beginning has always been enough. I've never had to take anything like after, after the fact for nausea specifically, I've had, I still have platin, those other things. It's, it has a lot of nerve results. Um, you know, cold sensitivity, first bite syndrome and neuropathy. It's, it's great. Uh, and fatigue big times. What did you say Jason? I'm sorry. Yes. hammer me once, once I got to the weekend. I've had people say to me the cold sensitivity, even though they were told about it, totally surprised them. Can you describe it a little bit for us? it's, uh, it's so what happens is it's, it's, uh, it's impact is like immediate, like, like the, I think the first time I had an infusion of Voxeloplatin, I went to, after I got done, I went to stop and get lunch and I got an iced tea and I'm just like not thinking about it. And I go to, to sip this iced tea and you, and you get this pain and your throat feels like it's closing down. Oh my gosh. Mm -hmm. nerve thing. So your throat isn't really constricting, but that's what it feels like to you. And you just can't, you cannot drink cold liquids. And it's also true of your hands. If you hold a piece of ice, it hurts, it's burning your hands, it feels like it's burning. So it's not just in your mouth. But that's the thing that you notice the most is your mouth because of so, yeah, we eat and drink things that are cold so often. Yeah, we had to get in the habit of, you know, for that week or so after the infusion of just getting him un -iced drinks. You know, we'd go to, we have an iced tea place here called HTO and we'd go and get him his big thing of iced tea with. no ice, you know? And sometimes we'd have to let things sit out until they could get a little bit more closer to room temperature. Yeah. I met someone who broke her foot because she took frozen chicken out of her freezer and then dropped it. And so, I mean, she laughs about it now, but how a chicken broke her foot. But it is it is startling to people. And because you're so used to doing things, I think it's easy to forget and then just go into a habit like she did of reaching into the freezer for making dinner to get the. So she said whenever she goes grocery shopping, what she shared with me is that she uses gloves all the time for grocery shopping and for whenever she's getting things out of the refrigerator and freezer with which to cook. And that's interesting to hear you say that it starts as soon as you get the oxyloplatin. Like it happened that afternoon. That's very interesting. So you mentioned this is a genetic type cancer. Did you then proceed to have your family screened genetically? Yes. Well, with this, they so generally they don't do screenings for until you're 18. So we've had one of our kids tested and not the other one yet. And she was negative, thankfully, which was huge. But I've also gone and gotten genetic testing, even though obviously I'm not genetically related to him, but I have cancer in my family. And just being made aware of. what these mutations are that are out there made me go. And this is hidden close to home. I want to see. And thankfully, they didn't find anything on mine. But they were able to do like a breast cancer risk assessment with me that's beyond just the genetic testing. They're also looking at what kind of hormonal birth control have you used. And they look at your past mammogram and how dense your breast tissue is and things like that. And I was actually found to have a little bit of an elevated risk of breast cancer, not highly elevated, but a little bit. My mom has had breast cancer, but was diagnosed when she was almost 70. And so now I know what to do about that. I'm going to do a little bit of extra screening for breast cancer in my life. So that's something I feel really strongly about is if you have cancer, especially parents with cancer, finding out if you're eligible for genetic testing. There's so many people. Jason was walking around with this, you know, this entire missing portion of a gene that he had no idea was missing. And if we had known in advance, his cancer might've been caught earlier. And in his case, we don't have a bunch of people in the family with this cancer. So there was really no way for him to know. But... that man, when you can find out early that you've got that genetic predisposition, you can actually do something about it. You can do frequent screenings and hopefully catch that type of cancer before it gets advanced. Great point, Beth. Thank you so much. You seem as a couple very close. How have you collaborated together and worked together to deal with this change, this diagnosis? Well, I think first and foremost in my mind is that Beth's been the researcher. So she's done all of the legwork. And I think that that's worked for both of us because she has a need to understand. And I'm an engineer. So normally, I'm very detail oriented. You can ask Beth when I go to. buy something, for instance. I do a lot of research before I actually make that purchase. But when it came to cancer, I wasn't interested. I didn't want to do any of that research because honestly, it's a protective mechanism. Because to me, I'm not the typical demographic. So whatever information that I find out about is not gonna be applicable to me. So why would I put myself under that pressure of maybe some negative statistics about survivability or something? Because I'm not the typical person to have this. particular cancer. So I have let her do what she needs to do and I benefit from it because she learns about different treatments and what's going on out there in the cancer research world and I don't have to be the one to delve into all of this. I can just, you know, basically what I do is I've been trying to keep my life as normal as possible when it comes to work. and family life, I just have tried to keep everything, you know, health stuff as normal as possible. And that's my coping mechanism, really. I think that's a good, really good coping mechanism. A lot of people that continue to work through their treatment do very well. They have that support network, but also they get their mind off of things too and delve into other issues, other problems that they can resolve and work as a team with. And I have found... in talking with many other people that that's been a huge benefit of huge benefit to them. And Beth, you are a great researcher. I know that. So what's your impression of how your and Jason's dynamic changed and also worked together since his diagnosis? Yeah. So I think you just kind of figure out what your roles are, right? And you kind of figure that out as you go. So on a practical level, all the research and stuff, we had this experience in December when we went to Houston for his PET scan, where the wrong... So when you get a PET scan, they... they inject radioactive tracer, they infuse radioactive tracer into your body, and that's what lights up on the PET scan in places with cancer or inflammation. And the PA who had put in the orders... And long story, but by the time that like when you get there, you're like on this countdown because this tracer breaks down and then they can't use it. Yeah, it has a short half life. And so by the time, so I was like fiercely researching and advocating, trying to figure out if they had put the right tracer into his body because we thought it might be wrong. By the time we got the answer that it was the wrong tracer from the doctor, who we were trying to contact. We weren't in the same building. It was in a different part of town. We were trying to contact. By the time we got that answer, they had taken him in for the PET scan. They'd waited as long as they could, and they'd taken him back. But because I was able to advocate and ask the questions I was asking and push for answers, which is hard for me. I don't like pushing for answers. But because I was able to do that, at least we got that answer that day. And we were able to. just our trip, stay for an extra day, get the right PET scan two days later, and get the information we needed to get. It was smooth, it wasn't easy, but we were able to, and I think that experience drove home something to me. And we trust our doctor, his oncologists, they know their stuff and we do trust them. But everybody can make mistakes and... There is no person at an oncology office who is going to have Jason as their very top priority. They can't. They are going to have patients as high priority and we are confident that they do, but they all have many patients. I'm the only person on his care team who has him as my top priority. And that puts me as the caregiver in this really important role where it is, it's my job. to be there advocating for him. And I don't think this dynamic is the same in every relationship. Sometimes it's the patient that has lots of questions, but hopefully one of you, between the patient and the caregiver, hopefully one of you is the question asker. Because we, as a couple, are going to have Jason as a higher priority than anybody else is going to because his, him, He's the only patient we are concerned about. We're not concerned about all the other patients. We're concerned about him. And so that's where advocacy comes in is you go, love our doctors. They make great decisions, but if we need to push, we're going to push. And that's kind of my job. If I'm going to make sure that I have the information I need, because my job is to know as much as I can about stomach cancer. His oncologist, his local oncologist, has to treat lots of different cancers. And so I want to become as much of an expert in his cancer as I can so that I can ask questions. So yeah, I think we've just kind of figured out what those roles are. And when I had kind of that realization that I'm the one person who's going to put him first, that really made me feel like more empowered to keep asking questions, even if I feel like I'm being annoying. I'm probably not, but even if I feel like I am, I'm going to keep asking the questions because nobody else is going to do that for me. And then just in terms of our relationship, like I think we have just chosen to like enjoy time we have together. Nobody knows how much time they have together, but cancer kind of gives you this, especially like advanced cancer, like he has, it kind of gives you this gift where it makes you more aware that you don't know how much time you have. And so, we're choosing just to spend a lot of time together, whether it's, you know, just going and doing something locally, going and running and grabbing a drink together. Let's go get a drink tonight. Or if it's traveling, we've been traveling more as a couple and as a family, just to get, to spend like quality time consciously together. And I think that helps keep it so that even though cancer honestly tends to feel really central to my life these days, It's not the only thing that's central to my life. Like our relationship is central too. And focusing on doing some stuff that's just fun and enjoyable and laughing together and all of that has become even more important during this time than it was before the diagnosis. You just get more intentional. Yeah, and we've already done more vacation trips this year than we did the previous two years combined. So... love the points that you brought up, Beth, about someone needs to be the question asker and one of you. And I think that is critical. And that's part of self -advocacy. And then your appreciation for there's no guarantees. And... and how you have taken that and run with it to spend time together as a couple and time together as a family and that it's a gift. And that I hope that people that are listening are inspired by that comment and either already do that or say, hey, we should start looking at things that way too. Because it does make a big difference. And Jason, you just appear and sound so calm. Mm -hmm. Yeah. remember, I've known Beth a while, she's a friend of mine, but I remember when you shared the news about Jason's diagnosis, a few weeks later you mentioned the support organization, No Stomach for Cancer. So can you share how those type of organizations can be of help to people? for one thing, I feel like those types of organizations have good information on their websites that you can trust because they're focusing on, you know, what's happening with clinical trials and things like that. I think it's No Stomach for Cancer that also has even like a free like packet of information they'll send you with like a note.-hmm. but sometimes like they'll send you like basically like a care package. They're good. I can't remember if it was them. Oh actually it was definitely them. They they sponsored a a big cancer symposium just a few months before Jason's diagnosis at I forget which university it was but at the university. has a big cancer center. And they put it on YouTube for free. It was like this five hour thing where most of it was doctors talking and they had a couple people with stomach cancer also talking. Stomach cancer is the same as gastric cancer, by the way, for anybody listening. I didn't know all this when he got diagnosed. And I got so much good information from watching this YouTube video with these experts talking about his specific cancer. So. Great source of support and great source of education. But in terms of ongoing support, I have found Facebook groups that focus on stomach cancer are often good, too. Now, you have to be careful. You have to sometimes wade through some bad information. good where you realize other people are going through exactly what you're going through. Those are being good for me too. Yeah. I find that the shared experience is so valuable to the people that are there. And so if for our listeners, if you're not currently involved either as a caregiver or a person on the journey themselves, for watching. you to try it. Many of our members that have joined have said, I don't understand why I've waited so long. And they're typically always free. And the support organizations often have just so many other benefits and information and so on. So it's, you can reach out on a national level with CancerCare .org, American Cancer Society, CancerCare .org actually runs, cancer type specific support groups that are facilitated by oncology social workers. And they can either be message board support groups or virtual. And so you're not having to drive somewhere, but having that access to that resource can make a big difference. How has this been for your kids? doing pretty well, actually. I think like, so our kids are teenagers. They're 18 and almost 16. And the older one wants to hear kind of as many details as we will share. The younger one doesn't want to hear as many details. So we take that into account. in terms of the conversations we have with them. They've been really supportive. I feel like I can see their desire to remain close as a family that just feels, you know, more, just more conscious than before the diagnosis. But I think because Jason has handled treatment so well and hasn't been super sick, it's been good for them. It's... Now, that's not always the case. Sometimes you are super sick, and I'm sure that would be a different experience if that were the case. But neither of them seems all that anxious about it, which we're glad about. I think you have to realize, we're there as their support. We can't depend on them for emotional support. things because we're a family and we work together. You know, we might need our 18 year old to drive the younger one somewhere because of an appointment. And I think that's all good because that brings you together as a family. But but we try to not make it a huge deal when we're spending time together as a family so that we can talk through it when we need to. And we're not hiding it, but but so that it doesn't feel to them like it's their whole lives. Yeah. Yeah, that's great. So are there some wisdoms or topics that we haven't covered that you would like to go over? Well, going back to the whole second opinion thing, because I know we kind of started out talking about that. I wanted to go into a little bit more detail about how to decide if you even need a second opinion. So for Jason, it came down to a few things. For one thing, we live in a country a good sized metropolitan area. Austin has about a million people in the entire metropolitan area. But it's not big enough to have like a cancer center. MD Anderson and yeah MD Anderson is actually going to be putting a location here but we but it's not there yet and so and so because especially because he has a cancer that's not as common of a type of cancer in the US it did feel important and and because it's metastatic it felt important to us for him to get that really highly specialized-hmm. we couldn't get locally. So that's kind of what went into that decision for us. But what we haven't talked about is that a few weeks ago, he also got diagnosed with prostate cancer, which thankfully is localized. It's not highly aggressive. If you're going to get prostate cancer, it's a pretty good kind to get. At this point, we are not looking. We talked about getting a second opinion, but prostate cancer, is treated so often where we are. And we were able to go to a urologist and a radiation oncologist and his regular oncologist. And the advice we got, we felt like it really lined up with the research I had seen. They have the type of radiation machine that he wanted to use. He's going to be able to do like a five-day radiation course instead of a 28 to 40 day one. And they have that locally, so he's able to get the treatment he wants. It's like 10 minutes from my office. Yeah. And we felt really good about his ability to get really good treatment locally. And because his prostate cancer isn't considered a particularly aggressive or dangerous type of cancer, it didn't feel as important to us to go to a place that has highly specialized prostate cancer on the. If it was the only cancer we were dealing with, maybe we would. I mean, maybe we would, but it's kind of secondary to us at this point. And we all only have so much time, right? And so much ability to travel and all of that. So you're kind of considering all of that together. One thing his oncologist said when we first asked about getting a second opinion for his stomach cancer, he said, you know, I don't think you're probably going to get different advice there than you do here. but they might have more access to clinical trials if you need that. That's important for a second opinion, especially when you've got advanced cancer. He hasn't done any trials, but in the future he might. And he said, and if it's going to make you feel better to get that, I think you should go ahead and get it. And that's part of it is like, what's your gut telling you? Are you going to feel better going this direction? And if you think it's something you might want to do, just do it. Like, because. that'll feel better. So I wanted to talk about that because I think it, especially when you're first diagnosed, it can be really hard to make those decisions because you're making so many decisions. So that's really practical. I don't know if that's a wisdom thing you wanted to hear, but. I mean, you step back and looked at the entire situation and the information you had and made an informed decision. And I applaud you for that. I also applaud your oncologist for saying if it would make you feel better, go get it. Any oncologist that I have met that is very good at what they do are often encouraged their patients to get second opinions. A, it will help them trust their oncologist more. B, you don't know what that second set of eyes or second set of expertise may have to suggest. And there may be clinical trials, but there's so much to getting that second opinion when you're in the situation that Jason is with the metastatic gastric cancer. But also if it was, like you said, Beth, an initial diagnosis of the prostate cancer and you weren't dealing with the gastric cancer, you may have... for a second opinion. So it's a very personal type of decision, but it's never fear bringing it up. for ego in this business. And he has said that more than once when we've talked about second opinions and talked about come back with what his MD Anderson doctor talked about. And we've really felt that with him where, as he talked with us about pros and cons of do we stay on this chemo, whatever, that he very much, it wasn't about just getting us to agree with him. It was about making sure that Jason felt comfortable. making the decisions that he needed to make. And yeah, to me, it would be a big warning sign if you had an oncologist who seemed more concerned with convincing you of their way than making sure that you're getting the best information. I agree with you and you're the second person I've interviewed who has brought that up as far as there's no place for ego. You know Jeff Stort and I interviewed him a couple weeks ago and he said that one of the oncologists he respects the most is also one of the most modest oncologists he's ever met and he said she's always searching for more information. She always wants to see a greater scope of things. she gets, she does not get offended with any questions. And so I think that there's no place for ego is a really good point to bring up and something to understand when you're working with your doctor. And I like what you're saying, Beth, is a warning sign of someone who's convincing you not to get that second opinion or doesn't encourage you to find more information. I like that. So. thing I would mention about, for one thing, my doctors are all at Texas Oncology and they have, they work with MD Anderson a lot and most of the doctors, including my oncologist, did fellowships at MD Anderson. So they still have, they have connections there anyway, but it's, it's been interesting to me how different the, the bedside manner is between my two, my two primary oncologists. So you have. my local oncologist who's very, you know, he really comes across as caring and wanting the best for you. And it's not that that's not the case at MD Anderson, but the doctor there is so, he's a researcher and is very just matter of fact. And he just lays it out there and it is what it is. And he gives you the facts and he's probably not going to hold your hand. And that's okay. I'm okay with that. And I actually kind of appreciate. in approach and it's a bit of a different mindset but I fully believe that they both have my interests at heart and my health at heart so I don't see any conflict I think it's actually maybe a positive that they kind of look at cancer in a different maybe a different way and treating it in a different way. I agree. I so appreciate you. Did you have something to say, Beth? You know, I'll add one more thing for other caregivers who are listening. And this is something I keep hearing from my therapist and I did do a caregiver support group recently. That was a six week support group. It was great. This is something I keep hearing is we've got to take care of ourselves too. And like I have a cruise coming up that's and it's like a it's actually a professional thing. I'm an audiobook narrator and it's going to be a narrator cruise. And we're realizing. that's been scheduled for months, there's a good chance it's gonna overlap with Jason starting his treatment for his prostate cancer. And I'm like, this is horrible timing. I don't wanna be gone when he starts his treatment for his prostate cancer. But we've talked about it and it's important to both of us that I keep my own identity through this. Cancer needs to not be either of ours complete identity. And we've gotta keep caring for ourselves. And honestly going on this. cruise of self care for me. And I know that Jason has other people around him who can support him that week. So like, I try to do things like I read at night and I take my walks in the morning with my dog and I do therapy and I'm on medication and I will put that out there because my mental health is important to me. This has been a very anxiety producing 10 months and I finally got on a low dose antidepressant, which has really, really helped. me feel like I'm holding it together better. So we're caring so much for other people, but we can keep caring for ourselves too. And that's, I feel like that's the only way to hold it together in the long term is to continue prioritizing your own care as well. That's a huge point and I'm so glad you brought that up, Beth, and talked about it and talked about how you are going on the cruise. Do you feel good enough to step away and that this is something really important to you? So I applaud you for that decision, but also thank you so much for bringing that up because that is so important for the people that are listening to this podcast. I so appreciate your time, both of you, and your insight. and you being willing to share your experience. Thank you very, very much for being with us today on Everything Cancer. Thank you, Jill.