Episode 3: Small Wins, Big Ideas

We're back with Episode 3 of Just Diagnosed! This week, Steve shares some positive health updates, the unexpected side effects he's dealing with, and an inspiring visit from a friend with an incredible survival story. We also talk about our exciting new website—where you can now submit questions completely anonymously!

Tune in as we discuss treatment progress, staying positive through uncertainty, and a brand-new idea to bring comfort to those battling stage 4 cancer. Plus, we wrap up with some fun facts about Steve, a little nostalgia, and a heartfelt reflection on family time.

Got a question for us? Visit JustDiagnosedPodcast.com to submit your anonymous questions, and we’ll answer them in future episodes.

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Transcript

Okay, hi, and we're live all right, this is what episode number four. Episode Four? Did you think we'd still be doing this for episodes four weeks in a row? I honestly do not think we'd be doing four episodes right now. I figured it'd be one and done. Yeah, no, we're really doing this. Yep, it's a real podcast. Well, I am Kati and I'm Steve, and welcome back to just diagnosed.
Yeah, welcome everybody. Thank you for all the downloads that we've been seeing. It's been incredible. It's been crazy. How many people are listening to us. I'm just shocked. It's awesome. I mean, it's really meaningful, and I think it's really cool for us to see that people care to hear what we say. Oh, and I am shocked at how many people have contacted me or sent me DMS saying thank you for speaking about what you're going through Week by week, because there was nothing out there before, and now you're probably going to help a lot of people that when they first get diagnosed, if they listen to you, you know, granted, they might not have the same everything I have, but at least they'll have something to go by. Yeah, it makes me really happy that we're doing this and that we get to spend this time together doing it. That's even better. So we had an outline for this podcast, like we do all the time. Yep, we send it to me to look at. I feel like an actor. No, I'm just organized. I have an outline of things I want to talk about, and I don't like to get I like to get distracted. Don't get me wrong, tangents, my favorite things, right? Aliens, underwater, um, but our outline kind of went astray. It went astray last night. It sure did so Dad, where did we end up yesterday? Well, Kati, you and I ended up in the emergency room. And was it for you or for me? It was for you, it was for me. But yesterday, as I was sitting there, I was getting more and more nauseous and I was getting more and more fatigued. And to give you a little background, I haven't pooped in about four days,
so I was concerned, and because I need a more nausea medication.
And when we got home, I think we sat here for like 15 minutes because I just want to make sure you're okay, I was like, let me just, I was, I wasn't gonna leave you right away. It wasn't just gonna, like, dip. So we sat here for a minute, you know, we just, we were watching the lightning game, trying to get that streaming for you. Yep. And you were like, we're like, I think I'm getting more nauseous. And I made you take the Zofran. He dissolved it under his tongue because he wasn't doing that before. And then you were still getting more nauseous. And that's when I was like, this should be kicked in by now. Oh, and then you do, didn't you try to give me a wipe or something? I did. Oh, I gave him an alcohol swab. That works for pregnant women. Okay, well, pregnant Yeah, but it does come on now, so an alcohol swipe. If you haven't heard this, maybe you can comment and tell me if this is, I mean, it is real. They gave it to me in the hospital and in the doctor's office, but they like, open up the little swab and they put it under your nose, and that, like, cure and that, like, cures your nausea. It's amazing. So I gave him that, and then, what, five minutes, like, five minutes after you gave me that, I was running to the bath. I haven't seen you run in months. I mean, I probably many times, you know how far to Beth. I was exhausted by the time I got there. I thought you weren't gonna make it. I didn't think I was gonna make it either. Mom would have been pissed if I were to throw up all over the floor. Well, you did make it. And that was, I mean, I'm not gonna lie, that was, like, really hard to hear. You know, you hate to hear your parent like, feeling so awful. Oh, what's worse is, people at our age, we should be done with this. No, you should never be puking. You should never be doing this anymore. You know, I hate to say for the little kids need to go through, right? It's easier for them. Yeah, they won't remember it. No, they won. They won't remember it to their bodies are, like, not gonna lie, like, stronger, you know, they can take it and and the other thing is, I'm not a good patient when it comes to excuse, I should probably use the word vomiting. Yeah. Is that better? Yeah? Probably, probably because I'm horrible. I mean, I am. I think my neighbors might have heard me. No, you're so loud.
But I didn't, I didn't miss. So it was good. And it was not gonna lie, it was pretty vile. No, I mean, it was, it was really bad. And then, okay, so then you would stop for a minute, and we'd be like, Okay, you have a second. I you know, try and get you to drown some water and you to get the taste out. And then you went again and again. And that's when I was like, Okay, let me text me Aunt Rachel. So shout out Rachel for answering literally.
And then I got some updates from her, and she was like, if he continues to vomit, call the on call. So then I called the on call after you were continuing to vomit, and they talked to you after I gave me your number. Yeah, the my the actual doctor that takes care of me. At FCC called me and she says, hey, the biggest thing we're going to worry about is blockage, so we want to make sure you don't have that. So she said, you might want to go to the ER and have them get a CAT scan to make sure you have no blockages down there and to make sure everything is good. So then begins our.
Our, you know, 9pm journey to the, er, yeah, 9pm for you to stop. But I didn't get home about two. Oh, that's what I meant. Like, I'm like, This is gonna be a long night where I buckled in, I made every sure everything was packed, because that's what I do, put everything in the bag, ready to go. And, you know, we went and thank God, it's not far. It's literally five minutes away, five minutes away. That's why I think we moved here. It's beyond that grid. So if the power ever goes out, yeah, oz will never go out, because we're on the same grid as the hospital. No Best Place to Be during the hurricanes. It's right here with you guys. So went to the hospital, got checked into, they got you back pretty fast. I was actually shocked by that. Is that a thing for stage four? I have no idea. No idea. But yeah, they got me back there pretty quickly. But then we had to wait. Oh yeah, of course, then you have to wait, but at least you're not like, sitting. Least you're not like sitting in the waiting room or anything. Oh, yeah. Oh, excuse me, one second my coffee for a second that was so polite versus what you normally
do. My apologies. No need to apologize, Dad. You You got this, yep, but yeah, it was, it was, they took you back pretty quick. Yeah, got me back pretty quick. Did all the blood work, had a CAT scan, sat there for a long time, out there for a long time, listened to sad songs. Oh my gosh, that was ridiculous. The songs we were listening literally just like, I don't know, I don't know what it is, someone asked me this, like, how can this literally came up today? It's like, how it's good that we I can just talk to you like this, right? And because I don't think that most people, I would tell you, if there was not a microphone in front of my face, I don't know that I could, right? I think that's the difference, right? Is that I really put this, I've said this before, I put on this hat where I can talk to you and not cry the whole time and be fine, and we can joke, because I know that, like, this is the time where we just lay it out on the line. Oh yeah, yeah. And, you know, last night, I was just like, let's treat this like a podcast episode. And like, let's just and then we had to turn the lights out so we wouldn't look at each other, so we wouldn't cry. I was crying, so yeah, talking about songs and like, songs that make us think of like your childhood and like your life, and that's one thing we've always had, is music, right? Always, always, always. And I mean, I It's so crazy, because another tangent, I'm just now getting to the age where my daughter is turning like things that she's doing in the song, right, and like so she narrates what she's doing by a song you did that when you were a kid. It's so funny. And I know, I'm sure I got that from you, because I, you know, we're always thinking of lyrics and songs and singing and stuff. And so she, I was giving her a bathway before this, she goes, I'm running a bath, I'm running a bath, and I'm gonna take a bath. I still do that in general,
and she does it with everything. So that just is a testament to the fact that we're always about music so well. I also want to thank you for one thing you educated me on last night, music. Yeah, I never knew Willie Nelson same, the same song, Kermit the Frog sang, okay, hear me out. I mean, that was just, I mean, the Willie Nelson pod was a little bit, you know, sadder, yeah, but, man, I really like the Kermit, the frog one. It's literally one of my favorite songs. If you guys haven't heard the song, it's called Rainbow connection, obviously, originally by Willie Nelson. If someone sang it before that, I don't know. Oh, do we add that to my funeral? If
or not? Oh, it's on there. It's on the list. Yeah, it's on the notes.
It is on the Kermit, the bra, just everybody. My daughter and I have a dog sensing we really do. We really do. I am so positive I'm going to beat this shit. I really am. You really are. I really am, and but you know, you got to have fun in life. You got to cooperate. You really do. And it just, you know, you just do. It just makes my day a better day, when we could goof around like that Well, and that's how I also think it's a coping mechanism for me, like, what if anything, like, everyone would expect me to have planned my own to say, like, that's just, that's such a US thing to do, because it's like, so funny. It's hilarious. And so, yeah, I try to, like, take the brighter side of it. Yeah, it's dark. I mean, shit. People shouldn't probably talk about stuff like this, but it then there you are last night while we're sitting in the hospital. Okay, give me the list of all the people you want to talk about. You know, when, when, when the videos are going along and who you want to call out on the screen. Yeah, because I got to make sure that this is an order. I'm Taipei, if nothing, hence the podcast outline.
Literally, no, I just think that it's the easiest way to cope and deal with even though it's dark. Obviously, we both remain positive throughout this entire thing. So, but yeah, so we're really Nelson rainbow connection. We got there. One of my earliest memories is watching the Muppets with you. And I remember that Kermit and Miss Piggy are sitting on this bridge. I'm pretty sure it's a bridge. I haven't watched this in forever, and his little voice was like my rainbow connection. I don't know you used to be able to do the voice. I don't know if you can still do it, yeah, but Kermit, no, I can't.
You can't do. But it was, it was a great song, and I loved it. And then I heard somewhere that Willie Nelson sang it, and I pulled that out, and I was like, Oh my gosh, this is my funeral song,
and you're welcome for sharing that with you and bringing that back up to the top. That was funny, of course, with the lights, which was funny to me. It was hilarious to me. I'm like, of course, yeah, I'll have the real Willie Nelson version. My dad has the Kermit, the frog. Oh, wait, can we take this one step further? Yeah, go ahead. So the lady that was in the room that comes around and takes all the parents, yeah, oh my gosh, she got in on some of this conversation, and it was a riot. She was so funny. Okay, let me just make sure I don't want to say too much about in case we don't want to get her in trouble. No, definitely not. But she had a very amazing she was really lovely. And hospital that the girl, lady, woman, registration, registration, woman that came to room that made
me pay. She was amazing. She really was, she was, she was hilarious with us. Yeah. Thank you so much to you know, Trinity hospital, HCC, Trinity hospital, they really took great care of us, you know, I'm sure they see tons of people at night, but they were just really kind. Your nurses was really kind.
And just, I don't want to keep going, Yeah, everything ended up okay, yeah, oh yeah, sorry. Back to this, yeah. The CT scan came back, the doctor came in, and I says, you know, the last time I was in here, the last day of doctor gave me some really, really shitty news, yes. And I said, if you're really gonna give me shitty news, you could just walk out right now.
You guys were ready. I know I left at like 11 something, when my mom got there. So then we swapped off, because I went to his bed. And she said, You guys were there a long time. And yeah, that was Yeah. And then he he said, No, your blood works good. You just need those we already know about the cancer and everything you have, you know, a little bit of build up, but there's no blockages or anything. And then he prescribed some, what do you call those things? Depository depositories, I have never bet you will get there, but never had a suppository before that's funny, least one I can remember well. So since everything's good and we're so dark, obviously we're gonna use the photo that we took as our podcast cover photo. So you know, we're not click baity, but we're a little bit
there. So let's go into our favorite segment, since we're way past our time, Steve, side effect of the week? Yeah, so first week was really good, and no new side effects. It just seems after the second week, they all really sought to come back around. Yeah, it's starting to be a what's
the word I'm looking for? Reoccurring, reoccurring? Yeah, you know, each week, week 123, I pretty much know what's going to happen. 123,
and by week three, I know I'm really going to really, really not do well, yeah, so this was definitely a rough week for you. I'd say, oh I say, and I did a little too much, too also, that that's, that's crazy. Um, how is it impacting your daily life with these side effects, um,
sorry, shortest breath.
Um, you know,
taking a shower, yeah, you know, when I got a shower, man, I just got to stand there for about five or six minutes just to catch my breath. It's that bad. I lost all this weight. I'm I think I'm down totally 40 pounds now, wow. And I'm almost down to 205, I was gonna say, Have you stepped on the scale in a minute? Oh, I did, yeah, I did. And I'm almost there. But, um, I'm freezing all the time. You are cold when I was heavy, heavier. Yeah, man, turn that AC on. Let's put a crank it down to 68 degrees. So let's move on to your um Moffett update. Because the last time we talked the We the appointment didn't happen. No, didn't happen. It got rescheduled. So tell me what happened from the appointment. It actually happened. Yep, it actually happened. They were able to get everything they needed, scans, everything from everybody. Then we, because they're all the way in Tampa, and it's a lot for me to go, I mean, I can go there, but it's like, deep Tampa. We should, you know, make note for people who don't live here, like, there are multiple Tampa is really big. And I think when you say Tampa, like, okay, Tampa, but like, just to get from, like, Tampa to where, you know, we live, or even, like, further out towards the coast, it's like, you know, almost an hour. And this is by, like, USF, Tampa, right? Like, that's, yeah, far. So for you, that's a, that's a long car ride. Yep, it was long, yeah, long car ride. But, but it was a great call. The doctor had the first lady came in, introduced herself. It was a zoom call. Next doctor on the screen came and just reviewed everything. I was truly impressed that he really read everything. That's good. I mean, he read everything, he asked questions, and then after that, the third doctor came in, the actual cancer doctor, and the other guy stayed in a room as well. He was phenomenal, really, oh, I mean, just.
Just phenomenal. You know, he says, can you tell me a little bit about yourself? And you know, I share with him about my basketball and everything, you know, and
it's okay,
it's hard, yeah, but he was so positive. He's like, Steve, you're going to be back on that quote before you know it. Got and it's nice
to hear it from a doctor. Yeah, it is, yep, it is.
But, yeah, yeah, no, he was really, really positive. And so I'm trying to catch my breath. It's okay, take a second.
And then the other thing, which was shocker to me, at least. I think it was,
was he's like, Steve, we probably need to take some chest X rays to see about your lungs. Probably need to check your thyroid, all these different things. He goes, we can try to help you treat your symptoms that you're getting from the from the drugs that you taken.
And I just thought that was great. That's awesome. But he was so positive, and
just everything he talked about, you know, with all my Learn, some things that, you know, with my
stage four cancer, that I have spots in other places where I thought they were somewhere else, you know, crazy, crazy, that they wouldn't be like, I wouldn't know that, right? How would I not know that? Because he was asking me. He goes, Hey, did your back hurt a lot? Yeah. And I'm like, No. He goes, Chris, on your, you know, and the back side of your on your lip, you know, where you're, where you're at there. He goes, it looks like there's some sort of swelling. And I again, I need my wife here, because I with on these drugs and everything. I don't remember everything, but, you know, he was saying that, you know, there was something towards your back that he was a little bit concerned about, and wanted to know if my back was hurting all the time, right? Yeah, the lymph nodes. Yeah. So that's what I you know, it's so funny, because you could ask me to point out where lymph nodes are in your body. Are there? Five? Is there? 100 I could not tell you, and this is why this is not a medical podcast. We are not in the medical category. We are in the lifestyle, you know, all that stuff. We are literally just talking about our patient category. We are the patients. We are not medical advice. But I kind of thought that your lymph nodes were, you know, chest area, or, like, closer to something else, okay, mammary gland, like, Yeah, we had talked about that, but they did say it's on, it's towards your back, and so, you know, that could be near your lungs, which could be part of why you're having the shortest of breath. Exactly. So to validate that, after being told like that, your shortness of breath is just a symptom of the drugs you're taking, of the immunotherapy, right? That how does that make you feel to be validated? Do you feel a little pissed off? No, I don't, because I think,
I think every hospital, every Well, every institution, is different. Yeah, they all have to follow their own protocols, sure. And, you know,
some places have different protocols, and I'm willing to do different things, and, you know, try different stuff, yeah, and Moffitt's ranked up pretty high up there, no. I mean, that was for me, it was validating, and that they had something different to say. That was totally different. That was, yeah, totally different to say that was, you know, directly related to how you're feeling, what you're doing. Like, they're they're not just going to stay on the same path. They were willing to go look at other avenues. So that was exciting for me, yeah, yeah. But they did say that the AMB, he says that's, that's good, let him on that. Yeah, keep going. And that's the other thing, right? They weren't about to, like, stop what you're doing, the tries. To try something new. He's like, let's, you know, build on top of this. Let's make your life better, yeah? And that was one of the biggest things that he said, Yeah. He said, Steve, we need to get you a better quality of life while you're going through this, right? And that was just powerful, yeah? Because one week a month of like, feeling kind of okay, which I wouldn't even say is kind of okay, because it's still pretty crappy that one week a month, like, that's not, that's not a life, you know, that sucks. So we touched on your lymph nodes, but one thing I thought was interesting was that they're doing a new clinical trial, but technically you're ineligible.
Yes, so tell me, how does that work with clinical trials like, well, the he's, he said, The reason why I'm not eligible is because my diabetes, damn, yep. He says that wipes out a lot of people, yeah, come to find out more research and
talking to more doctors and everything. You know, liver cancer can come from start when you were younger, from type one, type well, type type one, type two diabetes, yeah, no, I'm not a doctor. I'm not saying my liver cancer is from that, but that is the only common denominator that you know, is how I got liver cancer well. And just reiterate, you guys still have no, no reasoning why you got none. Like there is not been.
One doctor that's been like, this is reason. This is probably how this is something that looks like you might have done, like no one knows. Nobody knows. It's so freaking weird. Yeah, it is weird. All right, well off from Moffitt, um, I heard you guys have plans maybe to go actually, to Texas, because last time we also talked, they weren't really solid yet. So, yeah, it is official.
MD Anderson, the number one cancer institute in the country. Yeah, especially for liver, they're also number one in liver. Number one in liver. We got approved to get in there. Our insurance is going to cover everything. The only thing we gotta do is pay for any flights or hotel accommodations, and thank God, my wife works in the hotel industry, so which is good, but yeah, we are really excited. We're going to, we have to be there for three days. They're going to run tests, all different kinds of things, and then we're actually going to speak to a surgeon. That's awesome. Yeah, now doesn't really mean, you know they're going to cut it out, because I already know that's going to probably an issue, right? But he's going to talk about, you know, whatever comes down to certain things. They're going to explain all those things to us. That's awesome, yep, and I'm excited that, yeah, they are so all over the liver cancer, I just it makes you feel really good that you're meeting with these two hospitals that are so ahead of the game when it comes to cancer treatment, and that they're both, like, eager and ready to help you. Oh yeah, because I felt I'm not, not hating on anyone anywhere, very happy for your treatment and everything that's going on. I have nothing bad to say, but it makes me
frustrated that some people are just fine. Like, okay, your scans in the next four weeks, your, you know, your next three minutes, three weeks. Like, I'm like, Come on, guys, let's get on this. Like, you know, this is interoperable, incurable. Like, get me the goods. Where? Where is the, where is something that's, you know, gonna break barriers, gonna get us something better. Because I just feel like we've been on the train, and I need to, you know, I need to ruffle up the train a little
bit, yeah. And again, you know,
I really feel certain hospitals have their protocols as they just have to follow, yeah, and you don't know who's paying the hospitals and everything else, so that they're probably limited to things they can do, and you have to advocate for yourself. I think that's the number one thing you do. And I'm gonna be one thing is
you also gotta bond with your doctor, you know, it make them humanize you, yeah? Yeah. I mean, for the for the doctor at Moffett, you know, he said in the beginning of the call about the basketball Yeah, but even actually, after the end, he said, Hey, Steve, we're going to get you a better quality of life. And I'm telling you, you're going to get back on that basketball court. I love that so, you know. And he was just so positive about everything that's really good. Oh, yeah. Make me cry, because I just, you know, it's nice to hear someone that really cares. Can you can tell immediately, I could tell, I mean, yeah, yeah. It was crazy. I talked to a lot of doctors, yes. Well, you met with your diabetes doctor, yep. And tell me about that. How that go?
So the diabetes doctor went fairly well, you know, I let her know that I took myself off of ozempic. What'd they say about that? She asked, why? And I said, Well, I lost 40 pounds without it. And on top of that, I says, between the nauseousness from the cancer and the nauseous from the ozempic was horrible. You weren't eating anything. I wasn't eating anything. I said, just, just crazy. I mean, I can tell a difference. And she stopped, yeah? And I told her, I says, Hey, I really want to monitor this. I'm really working on it. And she was like, let's get a game plan together. And our goal is, by the time you're cured, you'll you won't be on any meds. That's awesome, yeah. So
that is the goal, I mean. And she she prescribed a new a new medicine for me. If I ever eat something that raises my my blood sugar too high, I just take a little injection of, you know, two milligrams or something. Yeah. So do you still have, like, the Dexcom thing in you all the time? Yeah? No, Dexcom, yeah, that stay with you forever. I don't even know what it does. Yeah, it's good for 10 days. Let's see what my sugar is right now because I just had some salad and chicken. This is our favorite game to play. After we eat big meals like Thanksgiving dinner, we all guess what our sugar is, and dad will pull out. What's your sugar? What do you think? So I'm gonna tell you what I had for lunch. I'll tell you what I had for dinner. Okay, all right, I had a Greek salad, okay, with some Greek dressing that's high in sugar, and then I had grilled a little bit of grilled chicken. Remember? Not bad, not a lot. Yeah, no, I You're not eating a lot these days. And then someone is a ziki. I'm
gonna go. 217,
oh, close. 175,
that's good. No, it is good. Okay. Kind
of teach you all this is crazy. Sure beats my three.
57 to 375,
going off all the time. That's what I'm gonna say. My I thought your resting baseline was like 220,
that's really good. So much better. That's really good. I'm really proud of you, yeah, if no one's told you that lately, Dad, I am really proud of you. Oh, thank you. Yep. So you did some things this weekend. Did way too much this weekend. Yeah, way too much. So I actually didn't know this. I don't think he told anyone, besides Michael and maybe mom. You went to the lightning game? Yeah, I did.
It was a Saturday game. It was early, and I usually do pretty good early in the day. You do? You know, by this time of night, I'm pretty much comatose, but I make it up for this. I try to get a little caffeine in me of some sort.
But yeah, we went to the lightning game. I think my son was kind of nervous about going to the lightning Oh, he was definitely nervous,