Latest / Mane AF / EP #9 What We Wish We’d Known Before Radiation—and Shingles

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EP #9 What We Wish We’d Known Before Radiation—and Shingles · Mane AF

• Mane AF Podcast: What did I do to piss you off this week? There's gotta be something. I'm too tired to be pissed off at you. You're too tired to be pissed off. Too tired to be pissed off. Wow. Is that because I'm keeping you busy with the podcast stuff associated with It's podcast stuff. It's work stuff, but it's also this the the shingles, yeah. Are making me insane. I'm not sleeping at night. I have to get up every hour to go get another cold compress. it's yeah. It's me. I saw on your Instagram you put that picture of the cold compress on your forehead. I accidentally found out that that works. I was so frustrated because I kept trying to use a cold compress on the itching on my face so I could sleep. And I got so frustrated, I just flapped, oop, flopped back and slapped the cold compress on my forehead. And the itching went off like I hit a light switch and I was like, Don't move, don't move, don't do anything, just lay here. And I got Five hours of sleep uninterrupted. Wow. Yeah. So put a ice pack on your face if you got shingles. There's no tip of the day. Nobody says that online. And then when I looked it up, it said, yeah, well, that works because it's the something about the way the trigeminal nerve and it stops the distracts the nerves. And I'm thinking, Why didn't you tell me that before? If you know that. Why didn't you tell me that before? But yeah, so now I walk around wearing an ice pack for a forehead. Yeah. It looks great. What did I do to piss you off? Well, this morning you were in the shower and we were having a conversation. Uh-huh. And the conversation quit. So I started to leave the room. I wasn't done. And apparently not, because I'm in the other room and I'm hearing and I'm like, what is she saying? And I'm hoping that I don't miss a major tidbit of of genius out of your brain. So I think that's your thought. And so I came in, I stand there and it was like, squirrel, you're talking about having to wash the dog or something. I don't know what you were talking about. It was crazy. And then I leave the room again and then I hear you talking again and I have to come back in. It's like, do you just want me to take showers with you? Is that what you're I can't see if you're still in the room or not. I thought you were still there. But What do you think? I'm just hanging around outside the shower just waiting for you to say something to me? Yeah. Apparently not. Apparently not. So today we're gonna talk about you finished radiation this week. We are, but what mo most importantly, it is breast cancer awareness month. Yes. It is October, which is breast cancer awareness month, which has affected me. It is also sober October, which is Also affecting you? Which has also affected me. And we did an episode on Sober October. It's going to be linked at the end of this so you can watch that. Also, we are going to have at the end of this the first two cancer journeys linked, the chemotherapy one and chemotherapy two. Make notes because I just gave you more work to do. But yeah, so that's we're gonna be talking about my radiation, my radiation journey. And this is something that I'm really excited about because you cannot interrupt me and correct me on this because you weren't there at my radiation. You you do it. Let's start this. Roll it. Give me that intro. Hit it. I'm Tyler Mane And I'm Renae Geerlings And this is Mane AF. Today we're talking about the next step of my breast cancer journey. I just completed 20 rounds of radiation. And we'll talk about what the process is like and what happens when treatment ends, but your brain goes and doesn't get that memo. Plus, we'll talk about how this month I got shingles because my body was so excited about doing a midlife podcast that it yelled, What's more midlife than shingles? Hold my purse. So yeah, it's been quite a month. It's been quite a year. But before we get into day's discussion, please subscribe and follow on whatever platform you're listening or watching on. That little click really helps us to grow the show and keep having these conversations. It takes a village to make a bigger village, and we're really glad that you're part of ours. Yeah. Let's do it. Let's get into this stuff. I've got some facts since it is breast cancer awareness month. for women, an estimated 321,910 new cases of invasive breast cancer will be diagnosed in 2026 with an additional 60,730 cases of non-invasive breast cancer, which is in Situ or something in in situ? In situ situ. In situ. It's Latin. I I don't I have very poor Latin. and for men, breast cancer, an estimated twenty six hundred and seventy new cases of invasive breast cancer will be diagnosed in twenty twenty-six. And I am one of them. It's a small club. Yeah. Yeah. But the sad thing about breast cancer. This year, the mortality rate across men and women is an estimated forty-two thousand six hundred and seventy deaths from breast cancer are projected in twenty twenty six. And this is from cancer.org, breastcancer.org, and stop breastcancer dot org. So these are the facts that are, you know, out there. And the thing is that There's a 40% chance to 50% chance, it's going up on a regular basis that you have a 40% chance to a 50% chance of getting breast cancer, not breast cancer, any type of cancer in your lifetime. So I have just gone through like we said, the chemotherapy. And you can see those other episodes at the end of this podcast. But also I just completed 20 rounds of radiation. Yeah. And ding dong, I rang the bell again. Yeah. And what struck me when we started your treatment was that when we started talking about chemotherapy, there are so many images out there of people sitting in the chair with the ivy drip. I feel like there's a lot more awareness of that treatment for some reason. I don't know why the visual is so much more common, but radiation, we had no idea what that process was. No idea. And the thing that I've noticed talking to people at conventions is that they don't know the difference between chemotherapy and the radiation and that there are two different types of of treatments for cancer, any type of of of cancer, but for for me specifically for my breast cancer. Yeah. I actually thought that chemotherapy included some form of radioactive material. I didn't realize it was it was chemicals. Yeah, it's all I it's all scary stuff when you start hearing them talk about this and have to make decisions on what kind of treatment you want to do and and and what road you want to go down. Yeah. And when you started radiation, when we started talking to the doctor about that, I think both you and I thought it was gonna be a couple sessions. Right. Like they were you were gonna go in, they were gonna nail you with radiation, you were gonna be all red and sunburny, and then you'd you'd be done. And when they said twenty. Yeah. I I yeah, I well, I think what they said was four, and I thought it was gonna be four sessions. They said four weeks of five treatments a week daily, and I almost fell over. Yeah. Me too. I bet you did. I I totally did. I c because I didn't know what to expect. And, you know, they take you into that room when we first met my radiation oncologist, and they sit you in this bland room and you're watching a video and I zoned out and accidentally fell asleep. I watched it though. I got all the information. But you watched it. I took notes. Stay awake during that video so that you can learn because you're better half may not show up on the radiation days when you you need some guidance. That is true. Yeah. But you know, so for for my so that first preliminary radiation is when everything is set up. Everything is set up. You are going into the doctor, the doctor's laying you on the table. You're on the table and they make a mold. For you, especially if you're breast cancer, your hands are above your head. You interlock your hands above your head. And depending on which breast it is, you turn your head to whichever side. And there's a mold for your head and shoulders. And what I didn't realize is that I should have said, hey, this is a little uncomfortable because I'm going to be in this position for the next month. You were committed. I was committed. And and I was stuck like that. But So so if you are doing that, make sure that you're comfortable. The one side was digging into my arm and it would numb my arm. So every time when I came out of radiation, I'd be like, okay, I'm good, and have to loosen up. Maybe that's why my shoulders giving me a little bit of problem. But what they also do is they line up the machine so it is precise on your body. And they draw marks on you with a with a Sharpie. And put tape over them. There'll be Xs and straight lines in areas. The Xs are where they line up off of them to know just how far they have to go to hit that area. Yeah. And I remember you came home and you said, I can't take these marks off me for four weeks. I have to keep that. And I was like, how Well, it was even more well, it was even more than four weeks. If I would have known that I wouldn't be starting my radiation until three weeks after chemo. Because we went and did that that first one the day right after, because I was like, let's get it done. Let's get her done. But I had to wait for the three weeks for the chemo to go through me or more. And I had to keep these marks on me. And they luckily they taped the X's. But a couple of them did come off and move it and and we were just guessing at them. I'm like, Holy shit, did I screw up this whole thing? And now also Talk about the area. I thought they were going to do radiation on just the area where you had had the tumor removed from, but that was not what happened. What was the area that they did the radiation on for breast cancer? Yeah, no, they hit the whole chest. They hit my whole chest, breast, whatever area it is, from below my nipple to above, just about to my collarbone and back where the lymph nodes are, they hit those into the armpit. So that whole area, and and I'll explain it in a little bit how it hits you, but that area was charged for it takes about 10 minutes each s each session. And we did 16 of those. but it was kind of daunting the very first time I went into that room, because you walking into this white sterile room. And there is a eight inch to 12 inch thick door there that they closed behind you. And it's like, wow, what are they pumping into me here? But you know, the the room was white, the bed was hard as the table, and you're lying there in your mold, my head turned off to the side, and they're adjusting the tube around you, the the the radiation. Laser beam, what is that? So describe to me what that looks like because it it it sounds from what you said like it's like it's a cat scan or like a when you go in the tube. Yeah. It i is it arms that rotate around you or Yeah, it's kinda like got two different arms that rotate around you. It kind of looks like our lights there a little bit. They can't see our lights. They can't see our lights. But i it it's you know, the one side's circular, the one side's flat. I don't know whether it's to bounce off of it or what, but you go in there and you lay down. and it's kind of surreal because they leave, you hear the door close behind you. And when for breast cancer, you have to take a deep breath because they want to make sure it keeps off of your heart and lung and and yeah, I thought that was really interesting. They just learned that at Harvard. They came up with you take a deep breath when you're laying down so that your rib cage expands. And your heart falls away from your rib cage. And the radiation is ultimately so targeted that it only goes as deep as your your bones, a little maybe a little bit like they said, the outside of your lung may have a little bit of a lesion or a sunburn on it, but the heart falls back. So the heart is no longer in the field of radiation. So that's it protects your heart, which is good news. God, I hope so. You know, but then like we were talking, how they change off. shifts, you know, because I'd have different shifts every week. And you take the deep this is the pattern that I got into. Okay, take a deep breath. Take in a little more. You have to get it just right. So those marks are just right. And then you hear a a buzzing. And I would count to see how long I would have to how how long I could hold my breath because I was Trying to increase my VO2 max at the same time. Look at me trying to, you know, have something good come out of this. And it did, you know, like I would hold for the whole count that they were shooting the radiation in the area. And then they, okay, breathe, but but there's also a meter on your stomach that tells how whether your breath is in enough or not. So that's how they go more taking a little more. Taking a little more, taking a little more, and then it starts. And you hear the and of it after you hear it for a few times, you get you okay, that's now I'm getting zapped. Now don't breathe because you don't wanna and then so they'd hit me from the left, and then this machine would go all the way, switch to the other side, and it'd hit me from the other side. And then I'd be done. And that would take about ten minutes. They'd take x rays each time to make sure, I guess, that the bones aren't getting brittle or something isn't happening. And they'd come in, you'd hear the door suck open, whoosk and they come in and okay, you know, and I'd literally have my shoulders up above my head and go, Okay, I'd try to get up. But it would just be ten minutes. So, you know, you get used to that. The first week went by, no problem. And and then the next Yeah, now also talk about this because before you started, they they gave you a very serious skincare regimen. Right? You're not allowed to use deodorant with any aluminum in it. So you have to have a a specific type of They wouldn't even let me use the deodorant my essential oil deodorant that I make myself, which is we'll get into that some other time. But the essential oils can be could mess with it depending on whichever oil I had. Make you more sensitive. So yeah, you have this whole skincare routine that you're supposed to be doing. Of course, I was like, it's not even affecting me. I did it, but not as much as I should have. Do your skincare routine. Yeah. That's all I'm gonna say. But I want to get into but you did But you did pretty well through the first week. I did I didn't there was no pink, no red the first week. The second week, even you started to say I can feel it a little bit. Yeah. The the first week, you know, you y it feels like I I don't know that it felt like it was getting warm, but you feel like something's going on inside. I believe the word you used was I feel like I'm cooking. Well, there we go. But I I You do that for the few zaps that you get, and then I was fine. But what I wanted to say is like this is about the whole switching out the team thing. I would be in there and I'd hear the the cooker come on the and then they'd say, Okay, take a deep breath. So I was like trying to get enough air in so that I wasn't getting cooked. I'm like, dude, should I say something? Should I take a deep breath bef you know? But yeah, so that kind of messed with my brain a little bit because I was like, Am I cooking things? They seem to not care. So I'm like, whatever. But that kind of freaked me out. But then I I talked to the doctor and of course it was a different doctor and I said, could you explain to me about what's going on with this chemo? Of course I didn't do it. Or radiation. Or radiation. Sorry, radiation. Radiation. I don't know why I keep calling it chemo. But the radiation I s I I I don't know why I waited until, you know, just about a week in or more. And he said, okay, well, what happens is the cancer cells are stretched out and they're mutating or whatever. And the radiation hits them in a certain way to destroy them more than your regular cells. So then you're and they're just hitting it with a little bit each time. So that's why you have to do 20 sessions and and just a little bit at a time. So in between times of destroying, hopefully destroying these cancer cells with this radiation, the good cells come in and clean it up, is what he kind of explained to me. And we're we're doing it on the whole chest for the 16. And then for the four, it got very, very pinpointed that they were shooting those four right on Right where the tumor was? Right to the left of my nipple. And it was cooking my nipple and my and the area where the tumor pocket was. I think they called it a pocket or tumor pouch, something like that. And that was set very directional and it was very close to my body, and it only goes a certain depth. It doesn't go, you know, it only went to that. depth of of radiation. So yeah. And then and while you were doing radiation, they told you not to be taking antioxidants or anything that was going to help your body with cell turnover and cell recovery because that while it's great for all of your good cells, they didn't want these tumor cells to get any boost to be recovering while they were trying to break them down. So that was also a part of it was that you couldn't take Vitamin C, antioxidants, any NAD plus, anything that was going to help cell recovery. Yep. And you know, the funny thing is, is because we're doing this as preventative medicine. I don't even know if I had any cancer cells left in there, but I'm pretty sure we cooked them out because my chest is pretty red and raw. Well, I will say it started the red. The redness and the and the little rash that look like a little red dots didn't start until week three. Yeah. And and when it did, it was extremely targeted. There is a line. It's it doesn't spill out. No. It's like there is a straight line. There is a boundary. Shape of my chest. Yes. Yeah. And it's funny because every week they would check on you, starting Monday after after the radiation, the nurse would come in and say, How you feeling? She has her little chart. From it goes from red mad ball face all the way to happy and green. Did you say your set point is the red mad ball face? Right. Like this is my normal. This is my normal lady. Back off. No, you know, I was like, I'm fine, I'm fine, I'm fine. And it didn't really kick in until the second to last. Day because I finished on a Tuesday and I talked to the nurse and the the doctor on the Monday and they came in and they were like, How are you feeling? I got I got one more to go. Just let's get on with this. I'm actually going to say I feel like not to correct you. But I heard you say so you finished on a Tuesday. I heard you say the Thursday before, which was the beginning of your targeted. Yeah. That was the day I found you down here laying on the couch. And you said, the They said I was gonna get tired, but I didn't on today. We was the day. We didn't even I didn't even get into the tired part. You didn't let me get there. what were you talking about? I was talking about just the how the how it feels. How whether the pain, the pain level, or the angry level, the whatever. But then yes, there was also the the the red face to the green face on tiredness. And I I was feeling a little tired probably the second, third week in, but it wasn't really all that bad. You know, I was still working out. I was I was I think what helped me is I'd walk biscuit every morning and got me energized. But then when I'd come home, I'd just be like wiped out. But I wouldn't even fall asleep. I'd just be drained, you know? And those last if after that 16th treatment, and then when it went into the local, it was I was thumped for, you know, the morning. But then I'd kind of gained my energy back. And I wonder, and I don't know, because I wasn't inside of you dealing with what you're dealing with, but there's a part of me that wonders if relatively you felt so much better because the chemo was kicking out of you that it sort of balanced out some of that early tiredness from the radiation. pr probably. But but then also I think I've come through this whole process as well as I have because of being as fit as I have been, and because I was off the booze for the year before, and because of me working out regularly. My workouts are probably, you know, during the chemo and everything were probably a quarter of what they are. I'm probably up to about half, three quarters of my usual workout now, you know, and I'm And this is something that I just realized in the last few days. I'm starting to sweat again. I wasn't sweating. It it's interesting. Your color is coming back. your beard is coming back. Yes. And even there's some fullness in your face that is starting to come back a little bit. Yeah. I I'm I am totally feeling better now that it is done. But then now we're getting into the mind games. Yeah. So you rang the bell on Tuesday. I rang the bell. That was another that was another thing. I was going through these so early in the morning at seven o'clock in the morning. There would be, you know, two people, the two people that do the radiation with me. Sometimes the nurse would be at the front desk to check me in, or she goes, Mr. Mane go ahead. And every once in a while there'd be a nurse at the station that I have to walk by where the bell was. But that whole last day of radiation, I was sitting there going, hmm, do I want to ring the bell or do I not want to ring the bell? And if I I I'm trying to figure out, am I going to prop up the phone? Cause usually the nurse wouldn't be at the station, right? Because it was seven o'clock in the morning. So I was like, okay, well if I do decide to ring the bell, I'll prop it up and I'll selfie with the bell. I'll do it myself. And you know, I'm like And then I was like kind of like sad because was like, who's gonna, you know, enjoy that with I would have gone with you if I hadn't been up until two in the morning working on the podcast. Well, you were, yes. You were you were doing good things. But I so I was like, how am I gonna do this by myself? Cause you know, I kind of wanted to bring it to to have it to show, to show the people. Yeah. And luckily I walked out there and I Got even more chipper and she was like, Would you like to ring the bell? And I'm like, Yes, I'll ring the bell. That's a that's a different reaction than you had with chemo. You c you really were like, I don't want to ring the bell. Yeah. I but so I was like, okay, I'll ring the bell. And I've got a video that we'll put up on this. Did you feel after chemo versus radiation? Because chemo, you knew you still had to go into a full radiation treatment. Was part of your not wanting to ring the bell because you didn't feel like you were done? Yeah, I knew I wasn't done. Do you feel done now? Yeah. I g I kinda I I do, but now I'm dealing with the side effects and what comes next and this is the mind game. I'm done with the treatment side of it. You know, and the funny thing is too, I don't know if you saw it, I put it on the kitchen table there. Is they give you a plaque that says that you or or a little thing that says you've completed radiation. A diploma. Like I got a participation. Participation trophy for completing my radiation. I was like, no, don't need that. But that was, I was like, Who thought of this this thing, you know? When you started radiation, was there something that you were bracing yourself for that turned out to be different? hell yeah. I thought I was gonna be cooking from the get-go. I didn't I I mean you you really don't know what to brace for. And I guess that's why we're doing this podcast, so that you know, I can tell people what I went through at least. It's I thought I was gonna be cooking and you know, I don't know why, because I mean radiation at the going through the airport terminals and stuff is pretty much the same sort of thing, just not as ex not as extensive, you know? I think in some way it's radiation. I don't know. I feel like I it's like some form of radiation. I feel like this radiation is a Well, this is definitely more Targeted and and This is more like the Hulk when he got hit with gam Bruce Banner when he got hit with the gamma rays. Well, okay, yeah. they hit me pretty hard. But it it's it's in small short bursts. you know, like the ten minutes that you're in there, it's probably you're only getting zapped for maybe one or two minutes, three minutes of it. What was the hardest part about treatment now that you're through it? What was the part that was the either the most painful or the most difficult for you mentally? In the radiation? With this radiation. With the radiation? You know, it wasn't it it wasn't that bad. The the You know, once once I started to cook and get the red get the redness on my chest and and feeling that, I was a little concerned. And then on my very last time talking to the doctor, she said, keep doing the the Salves and everything, and she said my nipple could peel and all these th I was like, What? What are you talking about? So that's you know, I'm I'm still Yeah. But but she said I've I'm I'm looking better than most, you know. So you also were working out through it and they said that is actually really, really good because the muscle fibers are also getting cooked. And the fascia in there is also getting cooked. So doing the fascia massage, keeping the muscles moving, keeps them pliable through the treatment so they don't seize up and get very important. Yeah. Yeah. And and she also said that my one the the area where we were hitting could be a little bit noticeably smaller. Muscle wise? Muscle wise. And Tone wise, I guess. And it does seem a little bit Well, that's common. Smaller. One's usually a little bigger than the other. Well. So but yeah, now it now it's just it's moving into what next that is the crazy part for me. Yeah. You know, i w the chemo really sucked because it ha it was doing it again and and you feel like crap and then it comes through your system and then you're feeling better and you gotta do it again. Radiation but then you're done. I did four sessions. Now the radius can get worse up to two weeks, one to two weeks after radiation finishes. Yeah. So Yeah. I'm still putting this stuff on daily to to protect you did. Who loves you? you do. I know you do. Who takes good care of you? You do. Who cooks for you? Me. I cook for you. But y you know, so so the the the radiation, albeit twenty times every morning, I kind of miss meeting the greeter at the door. You know, he'd probably like you liked the schedule. Yeah, 'cause it got me up, it got me moving, got me out of the house, and I'd see the same guy and see Larry, the technician, and be like, Hey, Larry, you know. And then when he wasn't there, it would be like, okay. But yeah, but but now the biggest part those were certain time periods, right? The the chemo was three months, four times, this was twenty times and done. Now I'm moving on to the stage and the the the the area where it's kind of freaking me out the most. And that is because I had an estrogen driven testosterone, we're trying to figure out what my estrogen driven testosterone. Or estrogen driven Fed tumor. Fed tumor. Thank you. This is why I have you here. Help correctly. You can't use chemo brain anymore. I can't use chemo brain. But I have this, and now we're trying to decide what plan and program I'm gonna do for the next five years. It isn't just three months, 20 sessions now. Now I'm moving into a five-year post-treatment. It's like a maintenance. Maintenance thing. Yeah. So I'm taking the tamoxifen. I've I've decided to take the tamoxifen and increase my testosterone. Yeah. So that I can't which is not exactly what the doctors love. Well, the I mean Explain explain to the people listening. We talked a little bit about You're probably gonna explain this better than me. So I will let you handle this one because So what we learned during the process. There are two types. treatments I could do. Is that for male breast cancer, it is still estrogen fed. Well, Tyler's is estrogen fed. And what we learned is that testosterone in a male body can be turned into estrogen. So and I'm I'm assuming it's men with a lot of free testosterone. I don't know. I'm I'm making that up. So we'll have to look that up. Well if if you carry a lot of visceral fat You can have higher testosterone levels also. And I was carrying a lot of estrogen levels, you mean? Yeah, estrogen levels. Estradiol. Because men do have estrogen, which I think a lot of people are surprised by. Women have testosterone. Men have estrogen. It's it's just in varying degrees. The only hormone that men do not have is progesterone. so there is no progesterone driven breast cancer in men. Right. But you had the estrogen driven type. Right. They gave you two options. The preferable option is to take a drug called tamoxifen or a drug that is an estrogen blocker. Yes, but I you're the one that said that the best outcome comes from the tamoxifen. Well, that's what they said. The best the best outcomes or as I read or heard, as I understood it. I could be wrong. the best medication, the most effective medication for long term not coming back is tamoxifen for this type of cancer. It's not coming back. It's keeping your estrogen levels down. So that it doesn't so it doesn't have anything to feed on. Right. Correct. Yes. Four or five years, because these type of tumor can live for four and a half years without food. And so you have to go five years without estrogen. Right. Tamoxifen blocks estrogen. Correct. For you, the wrinkle is tamoxifen. One of the side effects is that it causes blood clots and you have a high. High proclivity toward getting blood clots because of your factor V Leiden mutation. That is a risk. It it remains most likely the best treatment for your breast cancer, but it causes the potential for blood clots, which are which means, well, it just means I just need to stay on the. blood thinners and and all of that while I'm doing and be careful when I'm traveling and keep moving and doing all stay well hydrated to do. The other option was to go on it w it was Lupron. The shot was Lupron. Right. And basically what that means is that shot is a testosterone blocker. It would take your testosterone down to zero, which I do not want to do. And that was the way to stop it from if there's no testosterone, we can't turn any testosterone into estrogen. And then they still wanted you to be on some kind of was it amylase inhibitor? I don't know. I'm just putting big words together. But there was you needed a shot and you needed a pill. Right. But then they also suggested that you still stay on the blood thinner because of your factor five Leiden. So you were like, What's what's Yeah, where where are we at with that? I'd rather just be careful with the Yeah, 'cause I I you know, and the bottom line is I want to feel good and enjoy my life while I'm I'm doing this. Like for five years, if I have my testosterone shut completely shut off and I'm feeling like crap. The thing is the whole reason why I went on testosterone to begin with was to give me a better a better lifestyle and and optimize my living. You know, because when I first went in, I believed my testosterone was 380 something. And then, you know, I got it up to Around the 900, feeling great. And I know it's the free testosterone that's the most important. I think I was like up at 140, 170. I was feeling great. And when I was pulling back during this, it it was slowly dropping and I was slowly fli feeling sluggish. The last time we tested it, I was at 181 with a 20 free testosterone. No. Which I was feeling horribly. To be fair, you were also in the middle of your chemotherapy treatments. Well, yeah, but that didn't affect, you know, the the I don't think the chemotherapy affects your testosterone levels. No, but I'm saying it affects how you feel. it affects how you feel. So it was a cumulative effect. Right. But with the testosterone dropping, I was feeling like crap and And now I'm starting to feel a little bit better with coming out the other side of the radiation. It took me a little bit of time to decide. This was the first decision that I really needed to think about. And I took about a week, week and a half to decide to go with the tamoxifen and start talking with Dr. Cox about cycling my testosterone. But keeping it lower. But keeping it way lower. To try and get into a different optimal range, but also have a good body of light. We're trying to thread the needle. Basically. We're threading the needle. But and this is all too, this is all just speculative. Right. Because, you know, I I've had it all cut out of me, and this is all just preventative medicine. It could be And as we keep harping on. Because there are only 2,500 cases, 2600 in the United States every year, there's not enough to do a large enough study to really look at hormone treatments for men. So we're extrapolating from women's, which obviously estrogen and testosterone behave differently in the female body. So And this is the one time that the test is done on the women instead of the men. Yeah. So it's kind of the flip-flop, you know? Sucks. So let me ask you, because you're a doer and you like to have something to do. And much though you hated agreeing to do chemotherapy, you did agree to do the chemotherapy and you agreed to do the irradiation. And so you had a plan, you had something to do, and now you're in the waiting. So now every three, three months, you get a signatera test to test your blood to see if there's any DNA from that. specific tumor floating around. I guess, yeah. You listen to the doctor, not me, so try. that's why I brought you, babe. And and you stay on the tamoxifen and the blood thinners for five years. Yeah. That's not and and you know the tamoxifen in itself has side effects too that you have to worry about. Tell tell us about those 'cause I know you were looking at those. You know, I was looking at them, I think it's it's it's tiredness and and fatigue and and Some other ones joint pain or bone yeah, joint pain brain fog, I think, and brain fog, yes. There are a lot of women who do not complete their full five years on tamoxifen because the side effects are too yeah, you know, and and I'm I've been taking it now just for a little bit of time, and I'm like, my joints are feeling sore and achy. And every time I turn on my knee, it my knee pops, and I'm like, is that from the tamoxifen or is that something else that I just need to worry about? And that's the thing. That is the thing with with this cancer bullshit. Once you walk through that door, you're questioning your body, you're questioning your mind, you're questioning everything you do because it's gonna affect it could affect like, do I need to go in and get this checked? Because, you know, I've got this joint pain. Is that another form of something coming back? You know? Cancer coming back, whatever. And and the thing is, like when I we we when we were talking with our our doctor about me with the testosterone and and taking the blood thinners and everything, he's he he the one thing that he said that kinda freaked me out, he says, like, don't ride a motorcycle and I'm like what is what? Well and don't do anything that's going to get you. Don't do anything risky or Yeah. And so, you know, that life is risky. I know life is risky. You're Tyler Main. Yeah. And you're working in the yard and bare feet. Yeah, that was crazy. Well, by the way. it aches every once in a while. But the the good thing about it is is j well, just to recap that is I went out in the yard, I was cleaning and then came back and saw a spot that I missed and I went out there in barefoot and on walked on the rocks in barefoot and sliced my toe and then we had a bloodbath in the backyard and in the house for a little bit. But that was a good there were tracks. Foot tracks. Through the garage, through the house. It was a horror kinda like the Yeah. The whore Easter bunny was leaving his footprints everywhere. But yeah, I mean that but that was a good Good thing to to realize, you know, that was a wake-up call that I needed to get. And and I think and I think this whole thing we have now stocked up on clotting bandages and clotting powder. And that's something that's something that I gotta take and and take with me everywhere I go. Don't use dog stectic powder in a wound. Yeah. Yeah. I mean you know, but and and and that's crossed my mind too. It's like, what if I'm out and something happens where I really, you know, get a cut that it just that did I would not think about being anything. Yeah. And it just keep blu keeps bleeding, you know? I mean, that's you have to think about that when you're on the It's so frustrating going from being 35 and not having any meds and not needing any glasses and not needing any special anything. And you just wake up in the morning and just roll out of bed. You could jump on a plane, go anywhere. Now you gotta Pack your reading glasses and your driving glasses and your prescription sunglasses and your thyroid medication and your blood thinners and your special bandages. It's and wear your compression socks. It's like from being so low maintenance to being so high maintenance. I was no maintenance. The twenties, thirties, forties, even the fifties, it's like I'm invincible. Nothing's gonna happen to me, you know. I and I did I barely took aspirin, you know, or or Advil or telamone sometimes. Ibuprofen I'd take every once in a while. That was the most I would do. And now I'm on all these different medications. I mean, midlife sucks, but the alternative is worse. So I like to just think how lucky we are to have modern medicine. You know, I actually do think, and I'd need to do some research on this, but part of the fact that we live longer. Is one of the reasons I think why there are more cancer diagnoses because as your body gets older and less able to fix things that go wrong, the age of living, the the age of the standard what's the phrase I'm looking for? The life expectancy. Life expectancy, yeah, getting higher, it puts us more at risk for if for different cancers to pop up. So what was that I mean, I th I I think I pointed it out to you. Wha what was that guy's name? Is it Brian? Brian Johnson? No, no, no. The the other guy, the scientist who talked about the life expectancy back many years ago you'd live, you know, twenty, thirty years, forty years. you're talking about Cosmos my gosh, don't do this to me. He's very I I want to have him on the show. I'd love to Michael Help. What's his name? Three he has three names, he's a very famous scientist. Yes. Yes, Neil deGrasse Tyson for the win. Thank you, Michael. That's why we have a producer. But yes. I need to take Michael with me everywhere, just be like, what's their name again? But but that's the thing. Like, I mean, he he he did the life expectancy thing. Like the reason why we're living longer now is because of science, because of the medicines. The life expectancy didn't change over all those years. The point that he was making was They were eating completely organic. They were eating non-GMO foods. They were eating all of the stuff that we now say, you know, that's the perfect diet and we need to go back to that. But their life expectancy was like 45 because they didn't have science. Didn't have the medicine. Science is where it's at. Yeah. Cause I mean, back then you would have the factor five Leiden. And if you didn't have a blood thinner and didn't know you needed a blood thinner, you could die of a blood clot, you know, at any point in time. Yeah. So there we go. Yeah. Yeah. So I mean, for me now it's just the figuring out what comes next, you know, and and as Dr. Shroka said when she was here, it'll slowly get more and more in the rear view mirror, and then we'll put it behind us, you know, or or pack it away. But then again I was, you know, at a show and talking with my driver who had a form of cancer and had it removed ten years ago. He did the chemo and to shrink it down and the radiation and all of that. And maybe he didn't do the radiation. No, maybe he d I think he did both. And you know, ten years clear, he still it still crosses his mind, you know, and you still think, what if? Yeah, let's go there. You do this a lot where you put a good face on it. You talk about it clinically. Yeah. when you started, when you got the diagnosis, one scale of one to ten, what was your fear at that moment? Well, at at the beginning I was like, this can't be possible. And then it was I had it cut out of me and I'm like, it's gone, nothing. And then when we got the diagnosis that of what once they examined the tumor, I was like, shit, do I have this in other places in my body? So I was at a on a one to ten scale, I was at a twenty. And that was mostly after your PET scan, I think. That was when it hit the peak, right? When you were waiting for the PET scan? Yeah, yeah. Before the PET scan, because that's when you go in and you find out if it has it is anywhere else in your body. You know, there's so many So then you started chemo. What was your level of fear one to ten? Getting itchy. Getting itchy. Well, we're gonna get into that one next about the your your shingles. Okay. but so on one to ten. One to ten. Going into it, I didn't know. I was probably a ten and I quickly went down to a three or a two. Started radiation. What was your level of That was more I was like at an eight Because I was thinking, you they said, it's gonna be just like kind of getting a sunburn. Mm-hmm. And then now I'm like at a a one, a slightly irritated that I've got this rash that I've got to get rid of now. Okay. But now let's look forward at the next five years. Getting tests every three months. Wondering if it's gonna come back somewhere else. Yeah, that's that's a whole nother ball game. I I I don't I don't even know. I'm still unpacking that. I'm still unpacking that. But you know, but then I then I go, I've had it all cut out of me. I'm fine. It is so interesting to watch your brain because this is your pattern. This is what you do with everything. Fuck, I know. It's driving me crazy. You start to go, you examine something, you see the thing, and then you go, you know what? No, it's fine. I'm fine. It's fine. It'll be fine. I know. I and that's what I have to do with that. Do you actually believe that? Or is that a pattern and a habit that you have learned that helps you cope? There's probably a coping mechanism. You know, I just I would not think about it, but with doing this podcast now and we're doing all these research re research and and all this and and I'm having to think about it. And not put it away in the the closet in the back of my brain and shut the door and go stay the fuck back there. Now I'm unpacking it on a regular basis, which is kind of ooh, you know. Well, I think those are the most important moments for this podcast is when you when you allow yourself to stay there and examine it because you are not the only person who is going through this. There are No, and people watching right now who are potentially in a hospital bed with a stage three or four, are there treatments? Yes. But that fear is and maybe they don't have your ability to have a coping mechanism where you go, it'll be fine. Yeah. Well, then you I mean, you just have to keep as positive of a mindset as possible. You know, it it it is I fully believe that the more positive your mindset, the more healthier you're gonna be and the more better you are equipped to handle what is going to be thrown at you in in these situations. Like look at hey, I relatively had it, I'll dare I say easy. Some I had my tumor completely cut out of me. Some people's their taking the chemo to try and shrink the tumor so that they can ha so that they can have the ability to cut it out and then take the next steps. So I consider myself very lucky in this whole breast cancer journey that I'm on because I have I have been able to do preventative You know? Mm-hmm. So we're lucky that way. But yeah, so I mean, I still got tons of stuff that I gotta unpack with that. And and we'll we'll talk about that and you know, other things in other episodes. But another thing that I wanna talk about, I wanna talk about your what you're going through. Ugh. Your shingles. Ugh guys. Get the shot. Just get the shot. You heard it here because and I've seen it here. And I didn't even have it that bad. You know, and it was it is. It remains four weeks after my first symptoms showed up, diagnosis. I think I got no, was it Friday that I that I called? Yeah, and got the antiviral. It's the worst. And it's a it's so funny because I feel like now that I have it, all of a sudden everyone is coming out and being like, yeah, I had that too. It was horrible. And I'm like, why didn't you tell me? So let me tell you. It sucks. Do you have two days to lose to getting the second shot or the first shot or whatever? Do you have a week to sit around having the flu and feeling like crap? Yes, you do. Because the alternative is you sit around for four weeks with blisters all over your body. I didn't get those, but a lot of my friends did. Nerve pain, like you can't believe. I had shooting nerve pain in my top teeth, then in my bottom teeth. Then I had open sores all the way down the top of my mouth, all the way down my throat. I could barely swallow for a couple of days, but it's all on the left side. Then I had Red bumpies on my face. It never broke open because I started the antiviral very early and I was lucky, but it ran through the entire process. it is it is like a it's like a race car that comes up from behind and you turn around and it slams on the brakes with the antiviral, but it continues the skid and it will just take you out and it will just keep going and you have no idea how long it's gonna go and it's just gonna follow through all the nerves. I got it in my face. My whole face was red and bumpy about a week after the first symptom, the left side of my face, I got Ramsey Hunt syndrome. It looked like I was melting off and my whole face drooped and I couldn't move my face. And ever since then, that was what three weeks ago. I've now run through all of the symptoms of super pain in my scalp. Brushing my hair was really painful, sunburned, feels like bruising, and it was bruised all around my eye. Didn't look like it. I looked fine. So painful. shooting pains in my ear, like an ice pick. Then it was all of the stuff started to go away, but it was still painful to the touch. And then the itching started. Did you did you say that it started with your teeth? My teeth. Your teeth, yeah. It started with tooth sensitivity and then you were arranging a dentist appointment to try and arranged dentist appointment. And then an eye appointment. That was not Monday morning. I had to get the emergency eye appointment because I had something called Hutchinson sign, which is the tip of your nose getting the red rash on it. And when it's here, it's in the same chain as the optic nerve. A friend of mine lost her vision in her left eye completely. and this is not we've we've actually now spoken to many people who are like, I got it in my eye. You don't you don't want that. It can damage your cornea. but right now the itching. Is it's it's like I actually feel like I'm kind of going a little bit insane. The itching is there's nothing to scratch. It feels like little hair is tickling my face. It's getting better every day, but make no mistake, it still itches. And I can't concentrate, I can't sleep, I can't wear my glasses because the touch of my glasses on my face freaks my nerves out. you're even using my And now I have radiation cream on your face so that you doesn't keep just rubbing cream on my face so that rather than scratching, I can just rub it so that I can get some kind of a friction. We talked about the cold compresses. I rubbed my face raw multiple times in the middle of the night because when you're half awake, you don't realize that you're doing damage to yourself. I need the baby mittens. like they give when in the in the in the hospital to newborn babies. You know, I mean it was It i it was crazy. And and th the thing is, is that shingles comes from stress. It can be stress induced. It can be stressed virus that then comes back. With a vengeance. Yeah. As I like to say, it's the reunion tour you don't want a ticket to. when you have shingles, if you would get s shingles, things to look for, things to look for. Sensitivity. It actually starts with like tingling and sensitivity in the skin. A lot of people don't realize it started then. And a lot of people get it on their shoulders or shoulders or in the back or their underarm. Yeah. My family friend had it in the groin area. Do not recommend. and and then mine was in my face. My brother also got it in his face. And I've talked to several people who've gotten it in their I didn't I didn't think it could go in your face and but then after you know, the things we're learning with this, I I've Felt so bad for you. It can be stress induced. I wonder if it was stress induced like we've had one hell of a yeah. We've had one hell of a year, you know, with all the things that have gone on. But I I also and you you said some things to me That during this journey that really kind of affected me. And I know you didn't want to say anything to me, but you said, I can't lose you. I don't want to lose you. And you were stressed because of my treatments that I was going through. Well, of course. And I know, I know, I know. But I think that was. The epitome of stress, I think that you have been dealing with that could have brought this on. Well, imagine my father was such a steadying force in my life. he was not a he was not a man you could be like really emotionally close to, but he and I were we we were very close. Losing him at the same time as potentially losing you. And then also recently. Sprockett, our old man dog, has not been doing well. And now we found out he's an early kidney failure. So like all the men in my life. He will be he will be. But he's 12. And so I think this year, I'm yeah, it this year's really kicking me in the in the face. In the face. Wow, yeah. It's the shape. It gave you. So and I mean like I and the one thing that I want to touch on that I've You know, if if if you're going through something like this, hopefully what we're talking about helps you. But also now I've seen the reverse of it with being the caregiver role with you with the shingles. Of course, I said, go get yourself an ice pack or take care of yourself. You just keep yelling at me, call the doctor. Well, I and you know, that's that is one thing that I'm like, what the heck, woman? You told me to go to the doctor because I felt a lump. You told me to go get checked because of my swollen ankle. And I did. And now when it's the reverse and I say, Hey, call the doctor. We're we have this special concierge doctor thing. I'm paying for it. Call him and you go, I don't want to bother him. He's just gonna he's gonna just tell me what what I just read on Google. I always so in my defense, the minute I realized the symptoms could pot like I looked them up right away. I and I Called urgent care immediately, got on an antiviral before I even really had a grasp of what you were dealing with. They were like, it's most likely shingles, just better safe than sorry. I started in the better safe than sorry stage. And then I proceeded to Google everything. I was the one who was like, I need to go to the emergency ophthalmologist. So you're saying that I'm a shitty caregiver and you had to take care of yourself. I'm not saying that's not what I'm saying. Don't misread what I'm saying. What I'm saying is I actually was doing a pretty aggressive job at staying on top of what was happening to me and what I could do. The problem with the itching, though, is there isn't much to do. It's not like you can put calamine lotion on. It's not like it's a rash on the outside. It's not like it's something a histamine response. It's just your nerves having hallucinations. And the only thing that can treat that is medications that affect your nerves. And I also found out that the itch is probably worse because I drink high levels of coffee. And coffee is a stimulant which stimulates your nerves, which probably making my nerves worse. But the only thing I can take is gabapentin, which is the opposite of caffeine, is actually its effects are knocked out by caffeine. So it might not even help me anyway, unless I stop drinking caffeine, which we all know I'm not going to. And then it would make me sleepy, have no focus, and memory loss. And I looked it up. Gabapentin in women my age, particularly paramenopause, late paramenopause, postmenopause, it can cause brain fog and memory loss that is irreversible. Irreversible. And I don't want that. No, I can't, I can't have you having brain fog because I got the brain fog. No. This could be people could come on and say that's absolutely not true. And and I I would say, I don't know, I'm not a doctor, but just hearing that, I was like, mm-mm, no cancou. I am not, I am not taking that risk because God knows my brain fog and my memory loss are already they're real. So I'm just living with my it cosmetics tinted lotion and my concealer. They are putting in the work this last couple weeks, and I'm really trying not to itch. But if you have not gotten the shingle shot, get your shingle shot. You you I promise you. Feeling crappy after the shingle shot is gonna be so much better. Well, yeah. And I mean, I can testify to it. I got the shingle shot, the two shots. First one was fine. Second one, I felt a little bit fluy a day or two. Then I was fine. Yeah. It is nothing compared to what the hell you have been going through. Because I can't wear my reading glasses. Now I'm starting to get eye strained. So doing work is hard. I can't focus. I can't get anything done. It's awful. Just get the shot. Answer your wake up call, go get your damn shingle shot if you haven't gotten it, and protect yourself. Yes. So yeah, there, you know. I think we're pretty much at the end here. We've got Did you did you think when I got the shingles that I fell off helping you in any way? Did I abandon you? Well, you pretty much abandoned me for my whole radiation treatment. So I was kinda used to it. I was like, ouch, have fun storm in the castle, you know, every morning. I mean, you weren't even up. I I would go I wasn't even allowed in the room. I would go have my radiation, come home, walk the dog, come back, and then you'd kind of emerge from the bedroom and go, ooh. And then I had to be quiet for the next two hours while you got your coffee and figured out your day and You're not good at that. I am not good at that at all. Not good at that at all. So we've touched on a lot today. Hopefully people watching now have a clearer idea about what to expect from a radiation treatment sequence after breast cancer. Yeah. And they or I I mean it is the same scheduled their shingles vaccination. Yeah. I mean it's the the the radiation is the same, it's just a little different. You don't have to hold your breath depending on the the area that you're getting the radiation treatment on. So some radiation treatments are quite invasive though. Some are. Luckily I didn't have to deal with that, but Now we you know I've I've spoken about my experiences and and hopefully it helps somebody in the end. But I just want to say once again it is breast cancer awareness month. I am going to be doing a couple of in-costume photo ops. one is going to be at Spooky Empire over the Halloween weekend, where I will be in costume as Michael Myers for photo ops. And I will also be doing that. for the love of horror in Manchester, England, doing photo ops and a portion of the proceeds will be donated to breast cancer awareness. So if you're in those areas, please get your tickets. Come by and see me and help support the cause. And so I want to thank you for all listening and I think we are ready to roll out. Is that what you were roll out. Autobots. Roll out roll out. clearly we don't have this all figured out. But hopefully something we've shared helps you feel a little more prepared or a little less alone. So if you would please subscribe, follow, and send this to someone who could use it. Because that's how community grows and how we keep these conversations going. And we would also love to hear from you if there is a topic that you would like to see us tackle or maybe dive into even deeper. Reach out to us on the socials at mainaf pod. Yeah, so thank you for being here and we will see you next time on Maine AF. Peace. We're out.