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3: Crushing Cancer w/ Michael & Ashlee Cramer · Harder Than Life

• 0:00
  I'm Kelly Siegel and this is harder than life a podcast about self-love self-awareness business and health We tell outrageous stories and boil everything down to simple practical advice. You can start using today. Let's get living
• 0:15
  I don't want to waste a minute on an introduction. We have an hour and I want to get right to this harder than life story of, unfortunately, death and survival from cancer. Michael and his mom, Ashley, are here today to talk about their life and we are asking for your support on the medical expenses on their website, www.michaelandmomtalkcancer.com. It's at the bottom of the page.
• 0:40
  I just, Ashley, Michael, welcome. I realize Michael will never be. Thank you. Sorry. I'm just, I get fired up. I'm really excited to have you guys here. I realize that Michael, you're not out of the woods yet, but gosh darn, it's good to see you today. Thank you. It's good to be on here today. I like that hair. Thank you. Thank you.
• 1:02
  Please, I'm going to turn it over to you, man. Give us your story. I'm not even going to try to steal any of it. It's amazing. Okay, so I'll just start a little bit of backstory. I'm not sure if you know, but when I was 14 years old, I actually lost my father to lymphoma.
• 1:22
  You know, my mom lost her husband. It was tragic. And it was kind of one of those things where just this word cancer just scared me so much. And I hated that word. And I didn't think I was ever really going to, you know, I didn't think I was going to get cancer. You know, at such a young age, I would ever even get cancer. It was just...
• 1:39
  something that I hate. I hate the word cancer. I couldn't hear it for years. And then around March of 2020, when COVID had kind of hit, I remember the beaches were closed. Everything was shut down. And I was an athlete. I was on the Olympic development team for windsurfing.
• 1:55
  I was a surfer. I was always in the gym. I was in school. Very athletic life, very active lifestyle I lived. And I just felt really, really tired around that time. And this kind of went on for a few months. And I remember my mom thinking, you know, I had COVID or I had something.
• 2:11
  And then I started to get these night sweats. And it just wasn't normal. It wasn't me. And I remember the gyms reopened in around June in Miami. We were there with masks. I remember I went to the gym. And my friend and I, we did our first exercise. And then I went to the bathroom, and I just threw up. And it wasn't like me to throw up in the gym. I just wasn't like that person. And I felt disgusting. So I went home.
• 2:39
  And then my mom and I, we had a call with our family doctor. And she said, you know, you look fine. I don't see a reason for you to come in because, you know, your symptoms are just, you know, some night sweats. You're just tired. Maybe it's just hot in your bedroom because, you know, my bedroom had the sun coming in every morning.
• 2:58
  I don't want to think she blew him off. She actually said, would you like to do some blood work? And she said, I don't feel like you have to, but if you feel like you need to. And she wrote a prescription for blood work. Michael's like, you know what? I'm feeling okay. That weekend, that exact weekend,
• 3:13
  or Utah, you guys went surfing. Yeah, that exact weekend. There were beaches open in North Florida, in New Smyrna Beach. So my friends and I, we got like an Airbnb. We went surfing for a few days. I felt great. I was happy. And then I got back home and I was right back into that funk of feeling awful.
• 3:30
  And then I was like, it's time to do blood work. So we went to the doctor. My brother and I went. He took me because I wasn't feeling that great. I was getting because I was working. I was getting fevers at that point. And I remember going to the doctor during COVID. It was crazy. And I get into the room and I'm just seeing all these stars. I'm just sitting there waiting for the doctor. I'm just seeing stars and stars and stars. And I'm like, oh, man, I feel horrible. She comes back.
• 3:59
  She's like, you look fine, go home, we'll have the results in a few days. And then in a few days later, I'm driving to my friend's house. Well, that weekend, we're Googling the way he's feeling. And we're like, okay, you're probably anemic. The famous Google doctor. Yeah, the Google doctor. Well, I mean, we did the blood work, we were being good. But I was like, okay, a little more almonds, some dark chocolate, I'm a vegetarian, they eat really healthy. I'm like, maybe you're not eating enough meat.
• 4:26
  So that's what we were, that's where our heads were. That's why I just wanted to interject that our heads were like, it's either COVID or maybe you need a little more protein or iron in your diet. Yeah. But then. And then, you know, we got a, my mom got a call actually from our doctor and said that we needed to meet with a specialist at Nicholas Children's Hospital. I remember my mom, we went to the hospital together.
• 4:51
  We went to meet the doctor who's a super nice guy. He did some blood work. And the next thing he said was, you want to spend the night in the hospital and do a bone marrow biopsy in the morning. And I'm thinking, there's no way I'm spending the night in the hospital. Like, I feel fine. Like, I'm going to be fine.
• 5:06
  We come back the next day. At this point, are any red flags going up? No, not even. Not really. We're still thinking he's anemic. We weren't that concerned. The doctor that we met was a blood specialist. He was, it does say on his, you know, we walked in and said oncology, hematology. But in my head, I'm like, hematology.
• 5:29
  Iron, you know, and he was not overly concerned. He was super friendly. He was like, if you want to spend the night and do the bone marrow biopsy, we'll do it first thing in the morning, 7am. And I was like, whoa, I have two other kids at home. I was like, is it okay if we go back and come back in the morning at 7am? He's like, yes, a hundred percent. He wasn't. He wasn't like.
• 5:49
  there's something serious going on with your son. He's like, let's do a bone marrow biopsy so we can get to the root of this. So that's kind of where our heads were. Honestly, I still in my head was like, he's got COVID. They don't know a lot about COVID right now. Getting COVID tested was so hard. Even at the hospital, they did not do a COVID test until the next day they did.
• 6:09
  Wait, wait, what time was this time frame again? So this was July. Well, this was July 13th. So of 2020, right? Yeah. So we're deep into the part of COVID because it hit just to remind everybody from this. It was March 20th, 2020. So it was now you're talking July.
• 6:31
  And that's exactly when he started getting tired and it coincided with COVID. So even though in the end we found out it wasn't, that was why we were like, it's a bummer because you're locked in the house. Just like everyone was feeling crappy and tired and a little bit sad and depressed. You're not socializing. You're not going to the beach. The beaches in Florida, ironically, during COVID were closed. So everything he loved to do, all of his passions were taken away. So that's why we really thought more along the lines of COVID or sad and sad.
• 6:59
  He didn't have a lot of horrible symptoms until he got those last few days of fevers. And then that's when we saw his doctor did the blood work, saw the blood spread, the oncologist. And the next day, I'll let Michael know that. I was just going to say, you're catching me every time. I'm looking at the timer, like seven minutes in, Ashley took over. I'm just messing with you. I'm messing with you. So the next day, we come in for the biopsy, and the doctor told me to be NPO.
• 7:30
  And I had no idea what NPO meant. He's like, come back tomorrow. It'll be NPO. And we're like, okay. I have no clue. What is it? Okay. NPO just means you can't eat anything past, like, after midnight. So the thing was, we're just like, we're like. Good luck with that with me. Yeah. I eat nonstop.
• 7:48
  So that morning we came in, it was around like 7 or 8 a.m. I'd say. And I had like a bite of an apple and the nurse, she walked in and she was like, oh my God, what are you doing? You're going to be under anesthesia. You can't have anything in your system. So the bone marrow biopsy got delayed by a few hours. Which was fine.
• 8:06
  which was ended up being fine. But I remember, you know, I wasn't even thinking cancer. I wasn't even scared about the result. I was just scared about going under anesthesia because I'd never been under anesthesia before. And it was his first actual COVID test with the thing way up the nose into your brain. He had one of those COVID tests. I mean, it was when it was like the 10 seconds, really nasty. And then I remember- Sorry to cut you off, but in my, it's weird you're in Miami, right?
• 8:32
  Yeah, when Miami. So I have a house on the other side, the other coast. Everything was wide open. All the beaches, everything. So how can the same state? And I also have a house in Michigan today. I'm in Michigan. It's freezing cold, just to give you an idea. I'm catching a plane and I'm getting out of here. But Michigan, everything was closed. Everything. For months. That's why I bought a house in Florida.
• 8:54
  Well, here in like Miami, things were very closed, very masks, all of that. And more North Florida. I remember when they went surfing that weekend, I was like, make sure you bring your mask. You're not going to be allowed in a restaurant or anywhere without your masks. And they didn't need masks anywhere. In Miami, everyone was not. It was just the same state. It was wide open.
• 9:14
  That literally made me buy a house down there because of it. I walked in like, what is going on? There's a pandemic in Michigan. Everything's shut down. I go to Florida. Everything's wide open. I said, I have to live here. Let's fast forward to the point where they give you
• 9:30
  The terrible news, because really the story here is how you kicked its ass and your amazing personality. And then I want to kind of rewind a little bit to talk about your dad. So just let's go to there. I remember I had the biopsy and I woke up super groggy. I'd never been under anesthesia before. So if you've ever been under anesthesia before, you know, when you wake up, you're, yeah, you feel awful. You're groggy. You don't know what's going on.
• 9:57
  And I remember waking up and the doctor walks in to the room and he's like, you have leukemia slash lymphoma. And he said it just like that. No, no, no, no. No, he walked in this beautiful human who had these, I always say he had like these twinkling eyes, gentle kind, you know, big old mask, but his eyes were always happy when he walked back in the room after the biopsy, his eyes were not twinkling. He sat down.
• 10:26
  He was very human. He said, the first thing I'm going to say to you is this is treatable. And as soon as he said, this is treatable, I was like, shit. If he is saying this is treatable, that means it's something that he needs to treat. And then he said, Michael, you, and he spoke to us both together. He spoke to Michael as an adult. He was 19 at the time. He spoke to me. He's like, Michael has cancer. He has a blood cancer.
• 10:50
  It's a kind of leukemia. We're not exactly sure what kind. He said leukemia, maybe lymphoma. And that's, as Michael was saying, when we heard lymphoma,
• 11:00
  That's what his dad had, right? Yeah. Yeah. So I just remember... I want to interrupt. Ashley, you're an extraordinary human. You turn everything positive. Even the phone call from the first doctor, you're sticking out for that. That's a very rare quality, and I just love it about you. I'm going to be in Florida, and I'm going to make sure and find you guys, and I want to give you a hug. I just have to point that out, and then I know you've passed the...
• 11:28
  Apple hasn't fallen far from the tree and you've handed it off to Michaels. Your mother is extraordinary. So your positive outlook, I wish I could bottle that and sell it. That's literally all I talk about is over and over. Just positive mental attitude because I will tell you that I believe that energy and that positivity is why you were able to overcome what you did. I don't want to steal your thunder. I just had to give her kudos and props. You're amazing.
• 11:58
  Thank you. I feel the same about you since the first time I spoke to you. I feel the same about you. Oh, thank you, Shio. Sorry. Go ahead, Michael. And I'll take the hug. We'll take the hug. We're big huggers in this house.
• 12:11
  It's just extraordinary. And so pick it back up where he told you it's treatable. You're probably going through a lot of things in your head where like, well, my dad had this happen. I mean, you were 14 when that happened. Five years later, you're getting a similar diagnosis. It can't be settling. Talk to me.
• 12:29
  No, so I didn't really process it until like a month later, I'd say, because everything was so fast. I remember I got taken up to the sixth tower on the hospital, which is the oncology unit. The next day I had a port placed in.
• 12:44
  I didn't start chemotherapy until three weeks, four weeks later because they couldn't figure out my diagnosis. I was in the hospital for about a week after the doctor told me that I had a form of cancer, just doing blood work, getting blood, throwing up, feeling awful, getting all these infusions, people doing all these tests on me to figure out what I had, residents walking in, touching my toes, trying to figure out my diagnosis. I'm not even joking. It's a funny story we have.
• 13:13
  Wait, wait, wait, stop telling What is touching your toes Foot fetishes down there in Miami Yeah
• 13:20
  I mean, I don't know, but there was just one resident. He was awesome. And he was awesome. He, I don't know. They were just, they were looking for blood circulation, obviously, but I remember we would joke with him because he was the first guy to ever come in and like, be like, okay, take your socks off. I want to like feel your feet. And it was funny because I was like, okay, this is weird. But I guess they were just looking for blood circulation. Yeah. And we always joked with him about it later on when we would see him.
• 13:43
  So that was funny. Well, it's a teaching hospital. So they have a lot of residents. Yeah, so they have residents. And Michael was a mystery. So they couldn't normally with leukemia within 24, he said, you know, the doctor told us, he was like within 24 to 48 hours, we should be able to pinpoint which type. And then we'll start chemotherapy because it's, you know, chemotherapy is a protocol. And what happened was 24 hours later, like we still are not sure. 48 hours later, we're not sure.
• 14:13
  We found out afterwards that they did figure out what type of cancer he had within 48 hours, but because it's such a rare cancer, they did another bone marrow biopsy and they sent it off around the country, even to South America, to some hospitals, they wanted to get other doctors. Also saying the same diagnosis because what he had, I want to say had, cause he's in remission is hepatosplenic T cell lymphoma.
• 14:36
  There's less than two documented cases. Most people don't survive. They'd only ever seen one case ever in that hospital, ever, ever, ever. So it's a really rare one. What was the percentage of the diagnosis of survival? 15%. Usually it's about eight. And that's in five years. That's all the data. And it's even less than that. I don't even know. We've heard eight months, eight months survival. Do we care?
• 15:02
  Not really. He's here and we love him. It's awesome. 15% you, my friend are a miracle and I love it. And this is only five years out because that's as far as the data goes, but he's, he's here for like a hundred years.
• 15:21
  I have so many questions, but I want to get to the part where you told me so many miracles that happened. That's not even – there were so many, but the person from Germany that came in to give you the transplant. Just talk about – let's go through the miracles, the one after another after another, and then I'm going to go into my questions because I have so many questions. Right. So after that, I was officially diagnosed with a podospinic T-cell lymphoma on August 3rd.
• 15:50
  Say that one more time. I was officially diagnosed with hepatosplenic T cell lymphoma on August 3rd. Of 2020. Of 2020. I just wanted to hear the diagnosis. That's interesting. I never heard of it. I had the biopsy and the doctor sent me home on steroids. Which saved his life. Which would be a part of any cancer treatment. Because he couldn't start chemotherapy because he didn't know exactly what I had. So I was on steroids for three weeks.
• 16:16
  And the doctor calls us on August 3rd. He says, come into the hospital and be prepared to stay. He tells me my diagnosis. He basically told me that I had to do at least two and possibly six, like anywhere from two to six runs of chemotherapy and then have a bone marrow transplant.
• 16:33
  And I started tripping because bone marrow transplant, my dad, he had cancer, but his cancer went into remission and then it came back and they told him he needed a bone marrow transplant. So I was hearing lymphoma and bone marrow transplant for me. And all I was thinking was my dad and my dad, this is the same thing as my dad. And I was so scared, but I knew that, you know, he was going to get me through this. And I felt like he was always there watching over me. So I knew I was going to be fine. And I just had this mentality that I had to do this and I was going to beat this for my dad because there's no way that...
• 17:03
  I got diagnosed with cancer at this young age just, you know, to die. I had a purpose. I knew I had a purpose. And I started chemotherapy August 3. I was in the hospital for a week. Each of my chemotherapy rounds were 21 days. I would stay in the hospital for about six days, go home, come back, get chemotherapy. And after three rounds of chemotherapy, I was in remission. And October
• 17:28
  18th? I was, no, 19th. I was admitted to the hospital for my bone marrow transplant. And the bone marrow transplant is actually this insane thing because you have to have a match. And my brother was a 50% match. So he was not gonna be my donor unless we couldn't find a 100% match. My sister was not a match at all. And my mom, she was unfortunately too old to be.
• 17:56
  Let's just say it right out. No, it's true. It's true. You're beautiful, Ashley. Don't they? Just because you...
• 18:02
  It would be a half match anyways. So there was this random guy from Germany who was a match, 100% match. And he donated his stem cells to me. And I had my bone marrow transplant from 100% match from this guy in Germany. And for my bone marrow transplant, I was admitted for, I was in the hospital for six straight weeks. I had total body radiation to start out for four days, 12 sessions of radiation. I had the most intense chemotherapy that
• 18:30
  a body can physically handle without being pushed to death. It's like for the transplant, they give you the most intense treatment they can just to wipe out all the cancer. And it's so intense that, you know, it wipes out your marrow, basically it wipes out your whole bone marrow so that you can be ready for the transplant. I got my transplant October 27th of 2020. And then a few weeks later in the hospital, I developed this thing called engraftment syndrome.
• 18:56
  which is a very, it's not too rare, but it's kind of rare after a transplant. And basically I had all this pain in my back. I had these hallucinations, they were very, very severe. I remember being in the hospital and I'm like, mom, why is my grandpa here? And he wasn't here because nobody could visit us because I had no immune system.
• 19:16
  basically I was, you know, tripping. I was having hallucinations. I was closing my eyes and I was thinking I was on my phone and I was just, there were videos of me. My mom had a video of me just eating, but I wasn't eating anything. I was just hallucinating. I had no idea what was going on. And for days I was like that.
• 19:34
  And the doctors were so concerned because there was so much swelling and, you know, that could go to my brain and my heart and lungs. They thought that they were going to fail and they thought I was going to pass away that night, one of those nights. And they just immediately started me on steroids. Again, this is the second time that steroids are saving his life. Yeah, very high dose of steroids in the hospital. And that saved my life that night because they were very concerned. You know, it was like I didn't know at the time, but I was very close to death there.
• 20:04
  I have to bounce it because that's one of my questions. Your mom told me there was one point where you didn't think you were going to survive. Is that it?
• 20:12
  Well, there's later, there's like three points. Wow. There's a lot of points because then after my transplant, after those six weeks, I went home and I went home and I developed this thing called GIGV, GVHD, which is gastrointestinal graft versus host disease. So the graft is the bone marrow is the bone marrow from the donor attacking me, the host. And it attacked my body and attacked my GI, my GI tract.
• 20:41
  And this is a little TMI, but I'm sorry, this is just real. No, no, no, dude. I had loads and loads of like diarrhea. I was losing weight and that's what it is when I taxed your GI and I couldn't, I wasn't able to eat anything. I'm just gonna tell you, it was, what happens is when you're in the bone marrow transplant unit, they make you measure everything that comes out of you, right? If it's vomit,
• 21:04
  if it's diarrhea, if it's urine, everything is measured. And I was, I was with him. So I would, I would do the measuring. And how does one measure it? You just have a measuring cup and you just, how do you do that? Yeah. I mean, you have, it's called a hat that you can sit on. Something you have to pee in. It's very intense. It's very intense. And so at home, I had a hat and that's for like diarrhea. And they're like, okay, Ashley, it's time to start. I was letting them know on the phone, his doctor, what was going on. He's like, you need to start measuring. He had.
• 21:32
  leaders coming out of him, leaders. And when we went in, it was on Christmas day of 2020, when he was readmitted. When we went in, the nurse, Michael goes to the bathroom, comes out. And I remember she was like, I saw her face white. And I was like, wow, I knew that what he was going through was hard. But when I saw her face,
• 21:56
  I really knew what he was going through was bad. She had never seen anything like that before. Is this like the, this reminds me of when you get an organ transplant, sometimes the body rejects the organ. Is this very similar to that? It's similar. It's similar. So does the body process it? How did it assimilate to give you this fresh hair piece now that you've got, because obviously everything's working great right now. I mean, it's still assimilating. I'm still on immunosuppressants to calm down my bone marrow.
• 22:27
  And I still do an immunosuppressive treatment twice a week every other week for my bone marrow to calm my white blood cells down.
• 22:35
  But he's obviously much better. I'm obviously much better. It was a miracle that I survived this GI GVHT because what I had was like, I had severe GI GVHT. I had lost, I'd say like 15 pounds in like a few days, like no joke, just from the amount of diarrhea that was coming out of me. And I went to the hospital and they're like, we're gonna put you on IV nutrition. You're not allowed to eat for two weeks. Not allowed to drink. Not allowed to drink. Complete bowel rest.
• 23:01
  Complete bowel rest. And I remember I was there for about two weeks just like that. And they sent me home on this diet. And it's called the GVHD diet. And all I could eat was plain white bread, chicken breast with nothing on it, and pasta. There was three things I could eat for months at home. And I'm telling you for months I was on this strict diet. Like that's all I could eat.
• 23:23
  And all I could drink was water. There was nothing else. It was the most strict diet I'd ever been on. I've done bodybuilding shows that that's what we had to eat. So, hey, if it's the alternative, taking the, you know, not being alive. Well, okay. Well, the funny thing is I was on steroids.
• 23:38
  So I was on steroids and they make you very, very hungry. So eating those foods and having all those cravings, it was very tough. I got very creative though in the kitchen. I will say that. Very creative in the kitchen. I figured out how to use very few ingredients and make things taste good.
• 23:55
  So you don't know much about me, but I didn't, my parents were non-existent and, and I just, my heart just keeps, I would have, I could have taken over the world if I had a mother like you. So I admire you and what you were doing and I have questions for you later, but I just, I still am enjoying Michael's story. So keep going, buddy.
• 24:14
  Yeah, so the next, I'd say like five, four months, I went after I went home from those two weeks in the hospital, I was doing fairly well, I was coming to the hospital three to four times a week for infusions of this thing called mycophungin, which is antiviral, antifungal, antifungal. And so I was still in the hospital three to four days a week. And suddenly around
• 24:40
  I'd say it was April, March, my liver enzyme started to creep up and the doctors didn't really know why and they couldn't pinpoint it. And then a few months later, I was diagnosed with chronic liver GVHC. My eyes just turned yellow. Like my eyes were yellow, my body became yellow.
• 24:59
  You're drinking too much alcohol at that point? That's what everyone thinks. No. I'm just messing with you. I know. No, nothing. It was just liver GVHT, extremely unlucky. And at that point, I was so mad because I just got taken off the steroids.
• 25:15
  And if you don't know, corticosteroids, the medication I was on, they make you extremely bloated. My face looked like a moon. I did not look anything like I look now. You would not be able to recognize me. I had gained, you know, like 40 pounds on them. Like, you look huge. I was like, what's it called? I was like, what's it called?
• 25:34
  A chipmunk. I had a chipmunk. Wait a minute. Are you making fun of me because I'm wearing purple? Are you trying to say I look like a dinosaur? No, no, no. He wishes he looked like you on it. I wish I looked like you. We were working out. We worked out through this whole thing. We were working out. And no matter how much he worked out,
• 25:52
  he couldn't build muscle. These are not the steroids that make you build muscle. Those are the steroids. Listen to mom, we, we, we, I can't stress enough. Oh, just extraordinary. You're just amazing. How did it feel to have such a supportive system and then you have brothers and sisters? Talk to me about that. I know nothing about this. I have a sister and it was me and her against the world. And it was harder than life.
• 26:20
  But you, my friend, have a support system that's amazing and it's warming my heart. It makes me want to cry right now. Talk to me about how that makes you feel. It was amazing. I feel my mom is the reason why I got through all this and I have this attitude. You know, I literally wouldn't. I feel like I would have, even if my health stayed the same, I feel like for some reason I would have passed away if I didn't have my mom because she was the one who would drive me to the hospital. She was the one who was always checking if I was okay. And I feel like if I missed...
• 26:50
  you know, a few hours before going to the ER one night or a day, I wouldn't have made it. And she's the one who would drive me to the ER and take me on all those hospital adventures that we had. Adventures. And get the nurse right away when I was vomiting or feeling awful. And I feel like if she wasn't there, I just genuinely don't see how I would have lived through this. I just don't see how I would have. It would have been impossible. I would have given up because, yeah. I just...
• 27:20
  Are you guys spiritual? Do you believe in God? We are spiritual. We're spiritual, yeah. Were you before this? Yeah, we were always very spiritual just because we went through a lot when my dad died. You know, we were all there at home with him and we just, you know, we went through a lot as a family. We're always very close. And I feel like that, my father's death brought us very close together. Correct me if I'm wrong, you're the middle child, right? Yeah, I'm the middle child, yeah.
• 27:49
  trouble yeah I'm the one who I can't answer it is just a little bit so you have a couple of mantras uh beauty and pain and love uh my word for the year is love I'm I'm literally trying to exude love for everything I'm big into buddhism and I I
• 28:11
  Everything is love. So talk to me about those two things and what they mean to you and how other people can use it to deal with their difficult times. I mean, nobody's going to deal with what you just dealt with. And God only gives you what you can handle. So apparently he thinks you're a badass. She is a badass. Talk to me about beauty and pain and love, what it means. So beauty and pain. Beauty and pain really started, I would say, around –
• 28:38
  2021 when I was admitted to the hospital in, I'd say October, I had gallstones and I had to get my gallbladder removed, but I was in so much, so much pain with these gallstones. It was Wait, wait, wait, wait, wait, we're one year later, right? I know, I know. This is another thing. But this is where the beauty and pain... No, this has to do with the liver. But this has to do with the beauty and pain. This is when we really started talking about beauty and pain.
• 29:06
  Okay, I just, it just keeps... It's all related though. Life just keeps handing you things and you just keep taking it. Man, it's just such a good story. Yeah, and I remember when I was admitted to the hospital for the...
• 29:22
  for the gallstones and then my gallbladder removed because I was on so many immunosuppressants, so many drugs, the surgery is awful on the body. And even though it was a minor surgery, I was still in so much pain. Like every day they were giving me pain medication and I was still in pain even with the pain medication. But I remember the nurses in the hospital, they were so, so nice. And my brother would come to the hospital, my sister would come.
• 29:49
  And literally all I had, because I couldn't get out of the bed, I couldn't work out, I couldn't do anything, I was just in the hospital. All that I really had was love. Like when I was stripped down and everything was taken from me, my athleticism, my health, all I had was love. And I was in pain.
• 30:05
  And we really found the beauty in the pain because that showed us what love was and that love can keep you going through the hardest times in our lives. You know, my mom and I, we'd make TikToks. I would cry to her. I would cry to her almost like all the time in the hospital because I'm like, Mom, this really sucks. Yeah.
• 30:21
  But we would always get back up. We would always be like, it's okay. We're going to make it through this. We have each other. And we just had so much love surrounding us. And we gave so much love to everyone. And that's just what kept us going, was we knew that there was a purpose. We knew that we were going to inspire somebody. We knew that this wasn't just for me to suffer and then go back to living a normal life. This was more than that. This was just...
• 30:43
  you know, we had each other and I knew that my dad was just watching over it. I was just gonna ask you that. Did you feel your dad's love? I did, I did. So he, do you feel that, go ahead Ash. There's so many things that he just said though. Like one of them was our whole philosophy from the very beginning.
• 31:01
  When he started going through the complications after the bone marrow transplant were like, sometimes he'd feel down, but someone would be inspired. I'd be like, Michael, let's focus on that. If you can help someone else, you're going to help yourself. And one thing he just said, he's like, okay, I can feel love. So I'm going to give love right back.
• 31:19
  And that has been one of our like biggest lessons is when you're at your lowest, if you can just find a way to do one thing, good, take the focus off yourself to help someone else to love someone else. It just comes back to you like a million fold. And that has been one of our things with the beauty and pain. We have been handed a lot of pain. He's been handed a lot of physical pain. I saw him suffer so much and you can't take it away, but man, there were so many beautiful moments in that hospital.
• 31:45
  I know you want to say something and I'm no, I don't. I, you're, I, I'm sitting, if you could see me, my hands are sweating. My feet are, I am so touched by this and it's, it's, it's activating triggers in me and it's, it's, I'm feeling it, Ashley. So it's, it's, it's, where did this come from? Where did this positivity, this love, where is it from? Did it start with you, Ashley? Did it start with your mother? Did it start with your father? Where did this come from?
• 32:12
  Did it start with the universe? I mean, I don't know. I think it started when we just shared our story and we had so much positive feedback. Like, we posted it on Instagram, and my mom knows, like, everybody in Miami. Like, everybody. She taught music classes, and we would go to Publix. This was before I had cancer. When we go to Publix something together, we would knock it out of there because she would just be talking and find someone she knows every single time. I'm a very social girl. It ended up being, like, a 30-minute conversation. I can't tell.
• 32:41
  So, you know, I think it was that. I think it was the karma that she got from all those years of giving so much love to everyone.
• 32:48
  So, Michael, you have such an amazing positive attitude. What's your advice to people that are dealing with it? So before this interview, I was telling everybody the way this puts life into perspective. You know, somebody gets cut off in the car or, you know, I lost a deal at National Technology Management. None of this matters when you're facing...
• 33:11
  death. So give us how your remarkable 21-year-old self is able to look at this and say, give us the average person some advice on how to keep that positive attitude every day despite trials and tribulations and it never could compare to what you've gone through. Yeah.
• 33:33
  So one of the things we've been talking about lately, and I'd like to bring light to this, is that everything in life is temporary. We were talking about this a lot, and that includes pain, suffering, and it also includes the good things in life, unfortunately. But you have to realize that somebody cuts you off, right? That's just like one second of your life taken away. It's not going to matter. And...
• 33:55
  you know, you have to realize that you could, you know, you could die like any day with a freak accident. You have to understand that all you really have is today and you never know. So I live, and I feel like I live like,
• 34:08
  This life where I try to make sure when I'm with somebody or I remember, I think about somebody, I text them, I tell them I love them. I'm just so appreciative because I had never expected to get cancer. And I've seen so many, you know, we've had a lot of people that we've known in the hospital recently pass away. And it's so sad because those people, they're not with their family anymore. And they can't tell their family that they love them and their family can't hug them.
• 34:32
  So I live with this perspective and I want to give everybody that's listening this perspective that life is just so short, you know, and there's just there's no reason to get mad at little things or to, you know, not appreciate what you have because you have so much. If you have your health, if you have your family, if you have your loved ones, you have a job, you have a roof over your head. Even if you don't have your health.
• 34:54
  Even if you don't have your health 100%, if you are around your loved ones, you just need to appreciate the hell out of that because you just never know when that can be taken away from you. Attitude of gratitude. Yes. It's beautiful. I'm so choked up. I can't even. My next question is, Michael, what do you want your legacy to be and what's next?
• 35:17
  I just want my legacy to be of helping others. Like, you know, I lead two support groups for cancer patients. And I just want to be known as somebody that went through this for a reason, not to just go back to,
• 35:29
  to being, let's say a normal person, I guess. I wanna make sure I help everyone going through something. That's why I have a support group today at 5 p.m. and I'm excited for it because I don't know who's gonna join and who's gonna talk to me and who's going through some struggles that needs some advice. And I think I just want people to know that everything I do is, it's not for me, it's for other people, because I've been through all of this and it wasn't for me to go through all this. It was for me to help other people.
• 35:54
  And what's next for me is just continuing doing what we're doing, you know, inspiring people doing podcasts like this, you know, speaking. We want to speak a lot. We're going to this thing called Toastmasters once a week.
• 36:09
  So I met you. So the backstory on this podcast, this is the second podcast I just launched is harder than life. It's it's to give back. I'm not doing this to try to become famous. I've lived a different type of hard life. I didn't have to battle health, but I had to battle safety.
• 36:29
  things as a child that it was not safe in my growing up uh so i literally that's what all this is for us to give forward and and we're going to make a donation to to you i know i talked to rark he's going to do the same i'm going to pass you guys on we're going to forward this on to other people that i know in the business i know some people locally in miami that we're going to reach out to
• 36:50
  And we're going to do whatever we can to raise as much awareness and get you some speaking arrangements. Because as you get better, you have to tell this story. You have to share this with the world. And hopefully you're comfortable in the Toastmasters. And another thing, too, is it reminded me that I got to brush up my speaking. I've given speeches in front of people. I have the Toastmasters up on my computer right now. And I'm going to join my local based on Rourke and your recommendation.
• 37:20
  When you come to Miami, make sure you're on a Thursday. We'll bring you with us. Oh, definitely. You guys don't threaten me with a good time. I will come. We want you to come. I want mom, Ashley, you used to be a dance instructor and had to give a lot of that up. What was it you liked most about dancing? What was it you loved about dancing? Yes.
• 37:44
  What I love about dancing is dancing is just like, it's an art that you get to share. It's physical, you get to be on stage, you get to share all this joy. Have you ever danced? Like it's one of those things that we're born with,
• 37:57
  and little teeny tiny babies, music comes on. And the first thing you can see them do is move their bodies because we're all born with dance. If you look back through cultures, every single culture, we have different languages. Every culture has a form of music and dance. And I think that for me, I am a very joyful person that was born that way. And dance is just like a part of that. So it was always a way to express myself. And I always think that it like,
• 38:27
  You know, I know things in life happen for a reason. And I do think we have so many choices. I don't think we have like predispositioned. Our life is laid out in front of us. It has so many curves. But it's like being a dancer. I swear it set me up for becoming an early childhood educator and educated families.
• 38:47
  and being with families and teaching young children and then making this huge community. And then when Michael got sick, I had this huge community that was there to reach out and give us so much love. So everything that like, you know, karma, everything does kind of come around and I've given a lot of love in my life and I feel like we've gotten so much love, but then this
• 39:09
  I don't want to say it's an opportunity. It's not like cancer is an opportunity, but it's like another chance to give back and spread more awareness and more love. Because even when things are shitty and crappy, you still have no pun. Yeah. Right. No pun intended with that GRI GVHD, but, um, but there's still so many chances to give love.
• 39:34
  Even when you're, and I am not a toxic positivity person. Just, I want to put that out there because I do, I'm not disagreeing with Michael, but yeah, you're in traffic. Someone cuts you off. You get pissed and that's okay. But the point is not to hold on to it. You get pissed. Everyone gets mad.
• 39:52
  Someone is rude to you, of course you get offended. Something bad happens, of course you get sad. The point is though to live every moment and then okay, that moment is gone. Now we can be open to joy again or whatever is next.
• 40:06
  I love you. I can't help it, but I just have to tell you I love you. Michael, your mom told me about that the house is full of meditation and yoga. Do you tell me about, because that takes practice to be able to have patience and have the emotionally intelligent, emotional intelligence to let things go. And it's in practice. It's a muscle.
• 40:31
  are you doing, what do you use your daily habits and routines? Like I have crazy things that I do daily to make sure, you know, go to the gym. If you can't tell, uh, we can tell. Yeah. That's if I didn't go, I wouldn't kill. I would kill people literally. So what are some of the things that you do daily, your daily habits to, to be able to let things flow off? So my, my daily habit I've been doing ever since, um,
• 40:57
  Right before I started Radiation, I have a journal. In what's, it's a Google doc actually, but I write every single day in it, what happened and how I'm feeling. Just every single day. Like if you look, there's hundreds of entries in there. I have like over 70 or 80 pages just of,
• 41:15
  You can go back two years now or two and a half years now and just see what happened on that day, what I did, how I was feeling and what I was going through. I write just every single day before I go to bed. And I always, you know, we always do like a little meditation. And in the hospital, we used to meditate all the time. We would just put on meditation music. I would just sit up in my bed, push the bed up a little bit and try to just meditate.
• 41:39
  Sometimes I remember the nurse walking in on us when I was meditating sometimes, being like, oh, we have to do this, some blood work. It was just funny. But, yeah, I try to write every single day, meditate five minutes at least. So you just said Google Docs, so you're typing in your phone, your journal? Yeah, on my computer, yeah. There's probably some...
• 42:02
  just absolute magnificence in there. Yeah, there's a lot, you know, to me surprise, there's a lot of like very sad, very emotional posts in there all the time too. You don't have a bad day, I just write it out. I can't imagine what a bad day for you looks like. It makes me feel insignificant. The,
• 42:22
  No, because everyone has their path. Everyone has their path. Everyone has their difficulties. We went through this. He went through this. I went through this. But the point is to take whatever you've gone through and make it mean something, whether it's something small or something big, it doesn't matter. Yeah. I'm just floored. You really have me speechless. So out of the many miracles and blessings, what, in your opinion, is,
• 42:50
  was the most impactful one or the most moving one, the one that sticks out? Because there's just a laundry list of them. Because we didn't go over this one. I love the smile. First of all, I love what's about to happen. I love how you look at each other. I love the devious look. I can't wait to meet you guys. You think that everything else that you've heard was crazy. This is even crazier than all the other things I've told you. So when I was telling you around October...
• 43:13
  when I had my gallbladder removed, I had gallstones. And I had those gallstones because my liver was doing awful. It was failing. It was basically failing. I was really yellow. I had a, so you probably don't know what this is, but I had a bilirubin of 36, which is like liver failure numbers, which is liver transplant numbers. And we went to this different doctor at a different hospital, specifically a liver doctor. And she was telling me that I needed a liver transplant. And she admitted me to the hospital. I did a liver biopsy.
• 43:43
  And I remember the doctor, after the biopsy, he kind of walked in. He was, we didn't know the guy. This was at a different hospital. And he just said, your heart is failing. Your liver is like failing. He said these things that really just scared, really scared. Wait, hold on. He didn't say your heart and liver. Oh, yeah. Yeah, he did. He did. He did. He did. He did. And this guy was like, because my heart rate was extremely high. Because I developed this thing called TMA, which is thrombotic microantiges.
• 44:13
  And basically, they didn't know I had that at the time. And I actually had it before. So I was at a different hospital. They didn't know me. And the next day, I was actually transferred back to my hospital where they knew me. And they're like, your heart and liver are not failing, but your liver is on the way to failing, is basically what they told me. I had extreme, extreme liver GVHT, like the worst of the worst.
• 44:36
  And they were basically telling me I was gonna have to stay in the hospital for the next like four months, just live there and do a very, very high dose of,
• 44:46
  Sarah Holtzman , Mephylprednisone and I was like, this is crazy, and this is the part where you know I just I broke you know it's crazy because. Sarah Holtzman , I didn't think i'll be able to break but I broke and that's when everyone around me lifted me up, it was this insane miracle because my bilirubin was again 36 I developed.
• 45:08
  this complication called ascites, which comes from liver failure, where basically you just start bloating and bloating because fluids can't be processed. And they take a drain, they put a drain into you and they drain out all the fluids because your body can't, physically cannot push out fluids because your liver isn't working. So I had a drain in me, every day they were draining fluids from me. I remember it would make my blood pressure run so low that when we would decide to go walk in the hospital,
• 45:35
  I fainted in my mom's arms like twice. And I never fainted like that before walking. It was super, super scary. And at that point, I really wanted to give up. I was just done. I was like, mom, like I want to, I literally just like, I'm done. I was so like, this was a point where I broke. I was extremely depressed. Did you say you wanted to die? Yeah.
• 45:56
  Yeah, yeah, I did. I was, I was done. I was done with everything. I was just wishing the complications would, would take me away and the steroids were not working. I was not sleeping an ounce because one of the side effects is insomnia. Life was so, it was just like unlivable. My quality of life was-
• 46:25
  I hadn't gone out or seen any of my friends or I wasn't allowed to touch any of my friends when I saw them because I didn't have an immune system. So imagine I hadn't hugged any of my boys, any of my friends for two years. You hugged me. I was with my mom, yes. I was very lucky to have my mom. And it was this sad life. And I felt like everybody was just watching me suffer. And I even talked to my brother about it. He was like, Michael, like...
• 46:51
  You know, I can understand why you are trying to give up because, you know, your life is just it's just not a life to live. It's horrible. And just this miracle happened where the doctors, they took me off the steroids and they put me on this this medication, another immunosuppressant that was a third line treatment, which means you have to fail two lines of therapy before you go on to it.
• 47:17
  And even at that point, when they first put me on the medication, I was still so depressed. But I was in the hospital and weeks later, my liver just started to improve. Nobody could understand why. Because the steroids for the liver are like, for the liver GVHC are like the main treatment. It always works. And no one understood why this medication worked and why the steroids didn't. They were just shocked that I was only on this one medication and it was working. They also put me on another immunotherapy that was experimental. Yeah.
• 47:47
  And it just saved my life. It was the luckiest thing ever. And when I got discharged from the hospital in... It was April of 2022. When I look back on what I looked like when I got home, it was like, you could see what I've been through. I look... I was...
• 48:04
  113, 114 pounds, like I'm 6'1", so 114 pounds, like I'm like a stick. I was yellow, my hair was thin because I was barely eating. I had scars all over my body from all the steroids. So it looks like on my back, I have all these like slashes. It looks like I was whipped. I have, you know, my hair is basically falling out because I wasn't eating because I had this thing called gastroparesis, which is a paralyzed stomach.
• 48:30
  I could barely eat. I was vomiting every single day in the hospital, every single day at home. I was at this point when I got home that I was just like, one more complication, one more little thing would have killed me.
• 48:41
  It was just a miracle that my liver just started to get better and I went home. Because I was at the point where my body was just this frail, bony, like I was just, it was a miracle. And I just scraped through. I barely made it out of there alive. So was April your last, April of 2022, your last major stint?
• 49:01
  Yeah, my last admission. We came home at the very end of April of 2022. Yeah. Still in treatment, still outpatient, still go to hospital at least twice a week. But now it's outpatient and we've been living at home. So we only have a few minutes and I want to ask the two most important questions. Is there something I haven't asked today that you feel compelled to share? So many things.
• 49:29
  Fire away. Let me talk really fast. One thing people say is out of the kindness of their hearts, and we sort of touched on this, but I have to bring it up because I think it's really important. There's so many people say, cannot wait for Michael to get back to who he was before. Can't wait to see Michael on a surfboard. Don't want him to go back to who he was before. I can't go back to who I was before. If we went through this entire journey to go back to who we were before, what's the point?
• 49:57
  So of course, do I wish he could surf again? Of course. Do I wish he could have his physical body? Yes, but he is never gonna be who he was before. He is a totally different person. He is grandpa Michael now, and he's gonna say he's grandpa because of his osteoporosis, because of his bones. And I'm gonna tell you, no, he's a grandpa because he's so wise, because everything he's been through, he's this very wise, mature human that's been through so much at 21, and he has so much wisdom to give.
• 50:27
  And we have been very blessed to have each other. I feel like there's been so many times that I'm just, I did, I quit my job to be with him. I was very, my husband passed away in 2016. Even before that I was supporting us because he had cancer for a year and a half. We both worked.
• 50:46
  Um, when he got sick, I had to be the one to really make the money when he passed away, obviously. But with Michael, it was just like jumping off of the cliff. I was like, okay, I'm quitting. I'm going to be with him somehow. God, the universe, we're going to be taken care of. We're going to survive because I need to be with him. And it's true. Karma comes around.
• 51:05
  And we're okay. We have a roof over our head and we're here with you. We went from a house to an apartment. That's okay. We went from two cars to one car. That's okay. We're here. But I feel like we've been through all of this for a reason. We really have this very, very strong purpose to help.
• 51:23
  to give back and love. I love that that's your theme word because for us it's been love and acceptance. Michael talks about that miracle. It is true. When he was at his lowest, I remember pleading with him. He was like, I wanna go on hospice like dad because his dad was in hospice before he died. Two weeks he was at home, passed away at home. We were holding him. And I remember saying, Michael, do me a favor. And I was like, we can write a contract. Just give it like two weeks. And if nothing changes,
• 51:52
  Yes, we'll take you off of everything. And in those two weeks, miracles happened. They took him off the steroids. The Reserat got approved. The immunotherapy got approved. But also we always talk about this. One of his BMT doctors, bone marrow transplant doctors, this beautiful human who is also a spiritual being, not just a doctor. We talked a lot about acceptance and we talked about, okay, accept this is who you are now, Michael. And I felt like,
• 52:18
  Before that, you know, there's all this terminology on cancer and a cancer fighter and nothing against that. Because if you relate to being a cancer fighter, yes, that's amazing. But for us, it was like we had to not fight and just accept. And I feel like all of those things went hand in hand.
• 52:33
  Well, I wouldn't call him a cancer fight. I would call him a badass. He is a badass. Wisdom creates, experiences create wisdom. And learning and sharing that wisdom, we tend to not do as humans. And you sound like you got a good head on your shoulders. You have a good support structure. Anything I can do. I'm going to end it with, what can I do to personally support you guys?
• 53:00
  come give us a hug in Miami. I'm coming, coming. I, I, I need your energy. Your, your love is contagious and the world needs it. And I'm so grateful that you guys took the time. And again, give the, the website, uh,
• 53:19
  where people can donate. And like I said, we're going to make a donation. I know Rourke's making a donation. And then anything, when I do come down, I will come see you. And then I will come to Toastmasters, and we'll make sure that we can do everything we can to share this message because, Michael, you're phenomenal. And, Ashley, you are...
• 53:39
  I have no words for you. I love you and I'm blessed to know you. And I'm so grateful that you're, that you, that I, that work introduced us. And, and we're going to, we're going to do as much as we can together. We, we, we just met you and we love you too. We feel, we feel the same. That is our message is to just get out the love more than anything. We just, we really want to share this story. So I want to say it one more time. It's,
• 54:05
  Michael and mom talk cancer.com. Plus on there, you can make donations. You can also hear their podcast. You can read about the Rachel Ray story. It's just phenomenal. We just, we only had an hour. So I, I will have you on again next year when he's doing something like flying or whatever. I, I, and then I want to see where the hair grows. Cause I love it. I'm growing it out. So we'll, we'll see. Okay.
• 54:32
  You look good, brother. I'm really, really, really proud. I'm glad you said you were 6'1", because I'm 5'0". I'm as wide as I am tall, so now I won't come on and look up at you, which I won't be surprised. Guys, I thank you so much for coming on. I want to remind the listeners that the Harder Than Life book is available. Please buy it. And remember, until next time, be harder than life. Thank you for listening. Please rate and subscribe to Harder Than Life, and let's take this to the next level. Get connected at the links below.
• 55:02
  you