The Survivorship Project
The Survivorship Project is a podcast dedicated to sharing inspiring stories of cancer survivors and thrivers who have defied the odds, expert insights from leading health professionals and holistic healers, and practical tools for thriving beyond a diagnosis. This show is a beacon of hope, resilience, and empowerment for anyone navigating the survivorship journey—whether in recovery, treatment, or supporting a loved one.
The Survivorship Project
Michael and Ashlee: Facing Rare Blood Cancer, Finding Strength in Surfing, and Living Through Love
What happens when a 19-year-old Olympic-level athlete suddenly faces a rare cancer with just a 15% survival rate? For Michael Reid Cramer, this devastating reality struck during the height of the COVID pandemic, transforming him from a competitive windsurfer at peak fitness to someone fighting for his life.
Yet this conversation with Michael and his mother, Ashlee, reveals something extraordinary – not just a story of survival, but a masterclass in finding meaning, purpose, and even beauty through life's most harrowing challenges. Their approach to cancer treatment was revolutionary in its simplicity: they brought LEGO sets to chemotherapy sessions, held lightweight workouts in hospital rooms, and even visited the beach between treatments. Shower in your pain," Ashlee wisely shares, "but don't bathe in it.
The journey took them through aggressive chemotherapy, total body radiation, a bone marrow transplant, and ongoing complications from graft versus host disease that Michael still manages today. But alongside these medical realities emerged profound wisdom about what truly matters. Michael's perspective shifted dramatically – from career ambitions to helping others navigate similar paths. Together, they launched the podcast "Michael and Mom Talk Cancer," creating a connection for others feeling isolated in their health struggles.
Perhaps most moving is their return to joy – Michael back on his surfboard despite avascular necrosis in his knees, finding that his relationship with surfing has deepened through absence. "I feel like I'm surfing better than I've ever surfed before," he shares, not because his body performs better, but because his approach has been transformed.
Their message resonates far beyond cancer – it's about living intentionally in the present, expressing love without hesitation, and finding purpose in helping others. As Michael puts it, "Don't wait until you're diagnosed with cancer to do that thing." Listen to their extraordinary story and discover how love, acceptance, and connection can transform even our darkest moments into pathways for growth.
Resources mentioned in this episode:
• Connect with Michael & Ashlee on Instagram
• Michael & Mom Talk Cancer Podcast Website
• Beyond The Blood (Michael's Book on Amazon)
• Cancer Support Group for Carers on Discord
• Cancer Survivor Group on Discord
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If you want to be a guest on the show, email Carsten directly at ckpleiser@gmail.com
Please remember to leave a review for the show and hit the Follow button to stay updated about new episodes.
Today we are joined by an awesome mother and son duo whose strength and love will inspire you. Michael Reed Kramer was just 19 and in the best shape of his life windsurfing, surfing and sailing competitively, going to the gym 5 times, 6 times a week, when everything changed in June 2020 with the diagnosis of a rare and aggressive blood cancer. But this isn't just a story about illness. It's about rebuilding from the inside out, finding calm in the chaos, learning to trust your body again and discovering the power of mindset. By his side through all of this time is his amazing mom, ashley, whose love and resilience became a lifeline. Today, michael is a motivational speaker, social influencer, author and, above all, a truly grounded human being. And together he and Ashley now co-host the podcast Michael and Mom Talk Cancer, where they share their healing journey with honesty and hope. In this episode, they're here to talk not just about surviving, but also what it really means to live and to thrive. Ashley and Michael, thank you so much for being here. I'm really grateful to have you on this show.
Michael:Thank you so much for having us. We are honored to be here. What a beautiful introduction.
Ashlee:That's what I was just thinking. I started to cry listening to your introduction. Thank you so much. It's a pleasure to be here, thank you.
Carsten:Thank you as well, and the reason I got in touch with you is because I follow you on Instagram and when this cancer world, often things are very dark and gloomy and people are very pessimistic about things. But what I found when I listened to your content, which is amazing I always find it so energetic and meaningful for anyone not just people with cancer, but anyone to live life really in the moment, to live life to the fullest, and this is why I wanted to have you on this show. So thank you so much again. Michael, you were 19, you were windsurfing. You were surfing. You were in the high school team for olympic windsurfing, right yeah, I was on the olympic development team.
Michael:We were in high school, it was like a few of us and yeah, it was. It was a weird time. You know, I just turned 19 on May 19th and even by that point I was feeling a little tired and not like myself. And then it was literally like two months later when I was diagnosed with cancer, like two months after my birthday, I did a semester of college and then came home, covid happened. We were in lockdown and you know it was weird because I was an athlete my whole life. Like from middle school I was doing sailing competitions and in high school we're doing windsurfing competitions and we were like traveling the world. We would be in the gym like two to three times a week, like doing fitness to keep up with our shape, and then sail on another two to three days, so pretty much six days a week. I was going to school and I was windsurfing and training and then, out of nowhere, when COVID happened, I got really fatigued, just like really tired. And me I was never tired before because I was the type to wake up every morning, even on the weekends, like at 8am, like just because I like being up early and doing exercise, and going to the beach and doing things, and when I started to feel tired, like I'd wake up later in the day, I didn't have the energy to do my workouts. Covid happened. So I wasn't in school, we weren't windsurfing, we weren't really training, the gyms were closed, everything was closed and at first I thought it was because I was depressed because everything had shut down. I wasn't being social. You couldn't be social. At the time, I wasn't being as active. I was doing home workouts, but it wasn't feeling like myself and I had some night sweats and then eventually some fevers around.
Michael:Like the end of June, beginning of July, and that was my mom and I. We went to our family pediatrician because it was COVID. We trusted her and she did some blood work and that blood work came back a few days later and she called us on July 13th of 2020. And we met with the specialist at Nicholas Children's Hospital. He's actually an oncologist and he did some blood work of his own. He asked us to spend the night in the hospital and do a bone marrow biopsy the next morning, and we just simply asked him if I could come in the next day and do it and not have to spend the night in the hospital. Because we spend the night in the hospital, it's a waste of time.
Michael:I thought I was fine. I didn't think I had cancer. The next day I do the bone marrow biopsy. The results come back and it's a form of leukemia or lymphoma. He doesn't know what it is, but the pathologist had an idea, but they didn't officially diagnose me until August 3rd of 2020. But they didn't officially diagnose me until August 3rd of 2020. And then I got diagnosed with a podosplenic T-cell lymphoma, which is, like a 15% chance of survival, a very rare and aggressive form of blood cancer.
Carsten:That's horrible, and especially at this young age where you went to the gym every day and you've been feeling in the best shape of your life. All of a sudden, you have this tiredness and fatigue.
Michael:It was weird. I would go to the shower and like I would put it on so hot because I'd be like cold, and then I'd get out of there and I'd be freezing. And then I'd be walking in the heat in miami and I'd be like, oh, this feels so good because it's hot. My body was just very like anemic off and everything just felt weird. At the time I honestly contribute a lot of the success to surviving that cancer with going into it so strong, like I was the strongest I'd ever been in my life before I was diagnosed and I feel like it took all that strength to get me through the cancer because I lost so much weight and so much muscle so quickly. Didn't have that weight and muscle before Like I probably would have either passed away or the recovery would have been nearly impossible because I went down to like 115 pounds at one point. So that's really what's your height, six one, so 115.
Carsten:Six one is like like skin and bones basically yeah, I feel like the pre-diagnosis physical condition of a body is really important, something that happened to me as well, like I was climbing mont blanc and kilimanjaro like big mountains, and it was like basically training five days a week as well, and I was also similar to you in the best shape of my life and I was diagnosed and I feel like this really helped with the whole treatment procedure, with the chemotherapy and all of that, because if you were weak in the beginning, then you probably wouldn't have dealt with that so well. What was going on in your mind when you first heard the word cancer?
Michael:honestly, I don't remember it so much, but what I remember was that I just had to get through it. I looked at it like it was something that I had to just do and get through and that I would be okay and that it was for a reason and that I was going to be fine because I was young and I was healthy and I didn't feel too awful, even going through the initial chemo. I always felt like I was still with it and still there. It was very difficult, but I always, even during chemo, like I had my light weights with me in the hospital. We would go for walks.
Michael:Obviously, there were days where I couldn't do that and I'd have to be inside and I was vomiting and I was sick, but the majority of the time we were trying to do something to keep my mind off of it. When we'd be home from the hospital, we'd like go to the beach. In the evenings I'd wear a mask. Be really careful, you know. Go for walks, just try to do everything we could to make it feel like it was a little normal, even though obviously it wasn't normal. Yeah, you know, when we were in the hospital for six weeks for my bone marrow transplant, we brought like posters and we brought a bin of legos and we did what we could. You know we did we could to make it a better experience. And that's something I think everyone should do you know should always try to make the most out of your situation, even if you're going through cancer is just try to have fun, try to do something that'll give you joy we had music, we had aromatherapy, we put lights I put lights up, motivational posters.
Ashlee:we did everything. And not to deny you know this as well not to not to ever deny how hard it is, but you can still find a way to be positive. There is a choice. I'm like don't deny how hard not denying it. We've had our hard moments, we've had our cries, we've had our cries, we've had our tears. But then to come back and not just like stay there, well, like shower in it, but don't take a bath in it yeah love that it's so similar.
Carsten:Again, michael, like legal, you know you're a big fan of lego. I saw your youtube as well, how you build big projects. I was doing the same thing on the first day. I was building a massive mclaren.
Carsten:You know the formula yeah, those are awesome yeah, and I built it in like one day, just like I was like literally working on it, and it's supposed to take three or four days, I think, based on the recommendation, but it was taking me, like you know, just the whole day of completely building it from scratch I love lego.
Michael:It's so fun. It's a good distraction. I wasn't working on a set. We just bought a bin of legos, just like miscellaneous pieces we'd have competitions, yeah, we had competitions building like spaceships and stuff and fiddling with pieces to pass the time and being creative yeah.
Carsten:Did you go public immediately with the diagnosis or did you keep it for?
Michael:yourself.
Michael:In the beginning I shared it only with my close friends and then I shared it on my instagram.
Michael:I didn't share anywhere else, just on Instagram to update people, because people would message me, just like friends that I wasn't super close with, and they would just message me if I wanted to do something or hang out or what was going on with me. And I just felt like updating everyone because it was just simpler that way, so people would know that I'm not available to do something or whatever, just to let people know what was going on. Most people I know my age followed me on Instagram, so it was an easy way to put it out there and update people that cared about me, that, even the people that were living in Miami at the time, just like friends I've met from around the world and people we've been close with over the years it was just like kind of organic, kind of shared a video and then people responded and in the very beginning, when we weren't sure what type of cancer and the treatment and the protocol, we didn't say anything right away.
Ashlee:But once he knew when we were in, we're like okay, now the hair is gone.
Michael:Yeah, when the hair was gone. We made a funny video where all my friends came over and they had their heads shaved and we all walked through the door one by one on video and there's like a rocky theme song playing and it was like all the guys being bald and that's what happened is I posted that video, like I did it on a whim, posted on instagram and then, like there was just so many people were so moved, there was so much love around it.
Ashlee:This is you know, I always say that kind of like set the tone, because we realized that people were just so supportive and so kind and just reaching out and so caring friends for social media ended up being really positive yeah, you feel so much love all of a sudden and it's probably been there before, but when you have a diagnosis you really feel it right.
Carsten:You feel the human kindness and the love around you. Actually, like, obviously, as a mom of Michael and someone who has already been going through this road with you, with your late husband, how did you deal with Michael's diagnosis initially and how did you prepare yourself mentally to go through this journey again?
Ashlee:Yeah, it was really. It was shocking and you would think, having been through this with my husband, that the symptoms were very different. My husband, he was tired, but it was more. He had pain. He had back pain. So when Michael was feeling tired again, as he mentioned, it was in 2020. And it was literally just like a few months after COVID and the lockdown, and also at that time around COVID there were so many like symptoms, were so different. I was like, oh my God, he probably has COVID. That's really what I thought is that he had COVID. So that's why we went in for a blood test, where I can't wait in line, so we'll just go to his doctor and see if she'll do a blood test and maybe she can like figure it out. And when she referred us to the specialist, even then Michael and I were like, ah, for whatever reason, you're anemic, you know, didn't even think cancer, and you know, my husband, of course, far too young, but Michael's 19. I'm like you don't get cancer when you're 19.
Ashlee:And when the doctor came in after the bone marrow biopsy and Michael, you know, he was kind of waking up from the anesthesia and he walked in and I always say like it was the you know he had on a mask. Of course, that was what everyone had on the mask. And I always say, like, before he diagnosed Michael, before he went in for the bone marrow biopsy, he was like this really sweet guy with like these really twinkly eyes right, like you could feel his smile. When he walked in after the bone marrow biopsy, there was like no twinkle. He sat down and you could just feel, without seeing his face, you could just feel he was heavy and the first words he said were you know, what you have is treatable. This is a form of blood cancer, leukemia, lymphoma, form of blood cancer, leukemia, lymphoma. And when he said lymphoma, I swear I even right now when I'm telling this story, I feel like everything kind of just like stopped for a second and I didn't hear the next words. I was like lymphoma, like my husband, like Patrice, lymphoma. And then you say, okay, now we just deal with it, like it was a moment in time and then there was no choice. I was like, okay, okay, we went through this with my husband and he didn't make it, we have another chance. And I think that that was, you know, part of it is I felt like I learned so much going through it with my husband and you know not to get like woo, woo or whatever, but Michael and I both kind of feel like everything we went through taught us so much and we feel like he's with us. You know, he's been part of the journey as well and there's been a part of Michael that's like okay, I kind of need to do this for my dad.
Ashlee:And it was different and I, you know, with Patrice, I had three young kids at the time when he was diagnosed they were 10. Michael was 12. My daughter was 10. Michael was 12. His brother was 14. And so I felt like my job was I was his caregiver, but I had to work more. I had to provide for the family and I didn't want the kids to feel their lives so disrupted. So when you were asking before about sharing the story with my husband, we really didn't share the story. I mean, obviously my family knew, my close friends knew, our close friends knew we didn't really share publicly at all. I was really protecting my kids, protecting my family, and with Michael I was like I'm just going to trust the universe, I'm quitting my job because I have to be with him and he needs someone with him 24 seven. So I quit my job. I became his caregiver, like 24 seven, and it was a different story. We got very involved and we did share his story publicly not right away, but pretty soon after.
Ashlee:So it was a really different way to live it. I think I learned a lot going through it. The first time.
Ashlee:And we have become advocates now. Now we're really involved in the cancer world and I think that's something beautiful that has come out of this. We've also been in it for a long time with my husband. It was 17 months from diagnosis to when he passed away. It was very fast. With Michael it's been it's been almost five years. So it has been a different journey, but the common thread is the love you know it's the love.
Carsten:Yeah, love is all there. It's like my yoga teacher said to me once um, I was after diagnosis, I was doing a yoga trainer program, and she said to me love is all there is. You know, baba nam kevalam, she said, and it stuck with me to today and I realized that is. Is there any mantra or any like mindset that you guys use?
Michael:there's a few for sure. The first one is probably it's not about what happens to you, it's about how you react. That matters. That was, that's one that's like the first one we did.
Ashlee:The other one was beauty and pain, the whole beauty and pain became a big one. Like you can have the pain but the beauty and also the best way to help yourself is to help others. You're taking it off yourself. But love, like we always joke that there's like so many four letter words. You know there's four letter words that go with cancer, but for us our four letter word really is love and that has been, I think it's been the big one.
Michael:Definitely.
Ashlee:But there are lots of choices. You see this as well. You have the choice of how you react, and he's made beautiful choices. Have the choice of how you react and he's made beautiful choices. But I think his choices come from a place. It all ends up helping yourself, helping others. It all ends up going back to love. His choices are from love and I hope that's where we both have made our choices.
Carsten:Yeah, I wanted to go back to the transplant. So obviously before the transplant they had to nuke your immune system. Yeah, p2 zero, right? How was that for you?
Michael:and that was really intense. I mean I had total body radiation basically for four days, with some also some radiation to my lungs as well, some lung blasts. So it was I do the radiation. The first two days was just the total body radiation. In the last two days we added lung blast and it was total four days of radiation.
Michael:And I was at the children's hospital and they'd have to wake me up at five in the morning and get me in an ambulance, transport me to a different hospital, do radiation all day, not all day. Two sessions like one in the morning it's like 20 minutes, one in the afternoon, also 20 minutes, and then come back to the hospital at like five. So I was like working like a nine to five doing radiation basically while I just had gone through chemo. So I was exhausted. I had chemo like a week or two before, not really. Yeah, they needed to get the transplant right away. And then I did that radiation and then, once the radiation finished, I had like two rest days in the hospital or something see there was rest in two days.
Ashlee:It was like on the protocol on the roadmap.
Michael:It was like rest days and then I started some intense chemo to continue to wipe out my immune system and then, once my white blood cells were at zero, I got infused with the stem cells from the donor. I was put on a ton of immunosuppressants, like you are in the beginning of any transplant, and then you wait to engraft and then, once you eng, you engraft. Hopefully you don't have any issues. But I did have issues and I developed graft versus host disease um a few like a month after the transplant and that's what I live with to this day still his chemo was tough though but we're grateful because he was at a pediatric hospital.
Ashlee:People People that are in, you know, pediatric oncology will know this that they'll do more intense chemo for pediatric patients because they can kind of handle it and his cancer. There's no protocol. So hepatosplenic T-cell lymphoma if you look it up, most cancers like my husband there's a protocol that go with large B-cell lymphoma. These are the chemos we do. Now.
Ashlee:There's therapies in the last couple of years that have also changed, but with Michael there's not a protocol and we're really grateful that he got the pediatric chemos because they were so intense. That probably helped to wipe out his cancer, at least to put him enough in remission to get to the bone marrow transplant, because that often is the biggest challenge is getting to the bone marrow transplant, and he wasission to get to the bone marrow transplant, because that often is the biggest challenge is getting to the bone marrow transplant, and he was able to get there, but it was hard. You know he was talking about working out, and it's true, like through his chemo and transplant, but I remember that a lot of times it was two tin cans he was holding like cans of beans, that he was crying Because I was very weak.
Michael:It was very difficult. It wasn't like I was working out, like how I work out now or I used to work out. It was like very light workouts and for very short periods of time. You know, it's about the mental aspect. It's about just trying to feel better and trying to get a sense of normalcy and a little bit of a routine and just feel like yourself. Because when you're going through that someone just told us recently it's like you're looking your eyes, looking out, you feel like the same person, but when you look in the mirror you're somebody else. You know. I'm sure you know how it feels too. You feel like you're the same person, but when you look at yourself, like wait, like I'm bald, I'm scanning, going through chemo, but I'm still me, you know yeah, I always try to see it as like cancer is an experience I have.
Carsten:I never use the word fighting or battling with it, because I fight or battle something inside me, but I never let it really define me in any way, shape or form. It's always something I've considered like this is an experience, it's part of the journey and it has given me lots of opportunities. But yeah, I mean, I see it similar to you giving some kind of control back, even with just like little cans. It gives you some kind of control and momentum and also some kind of you know normalcy in a completely crazy world. It seems like your oncology team, especially your doctor, has been really, really helpful and they've been really on top of things. Right. I've listened to one of the episodes where they had like a little group of five or six experts together and they were exchanging ideas about treatments and I think, did you do some research as well in terms of what kind of medication or chemotherapy they could try or yeah, mainly that was for the graft versus host disease.
Michael:Okay, the chemo and stuff was up to them and it was rather quick. It was a few months but okay. But the gbht has been more of a thing that I've done more research on and more of a struggle actually, in a way, because it's something I'm still living with and still having to do treatments for and possibly having to start a clinical trial in a few weeks.
Carsten:I don't know if I will, who knows so every three weeks you have to go through the hospital again, you have a pod right and you get your blood into a machine and then we'll do something with the blood and then put it back into your body excuse my language.
Michael:I'm not a doctor, but kind of, right now it's every eight weeks, but if I have to start this trial, it'll probably be more again. We'll see what happens. It's confusing. Even I'm confused. We're talking to the doctor soon and there's a treatment. I'm supposed to start a new immunotherapy but the insurance hasn't approved it. So if the insurance doesn't approve it, we might have to start a clinical trial to get to that treatment, because the only way to get it would to be through a clinical trial. So we'll see.
Ashlee:But his doctors. This has been a blessing, I feel like, and maybe it's also us, because maybe we have advocated more. And now I see that that was one of the differences with my husband and with Michael, and maybe because with my husband I knew nothing and we really did kind of the doctor said do this, this is what we're going to do, and not that. That's not okay. I think that that's good. We do want to trust our doctors. That's not okay. I think that that's good. We do want to trust our doctors. But it was a blessing that maybe because his cancer was so unique that there were five doctors on a group chat putting together ideas, and then also his doctors have been very involved. But we've been very involved. We talk to them, we share our stories with them and I feel like we've treated them like humans and not like the gods that sometimes they are or that some people think they are, and we give them control often and I think that works for some people, but for us we've had a two way conversation Since the beginning. It has always been does this work for you? And it's, and it's been great.
Ashlee:And sometimes you know they give their opinions, but what you were saying before. I love what you were saying about the fighting and the battling and I would never, you know. I know a lot of times in the oncology world people say they fought, they battle, and it's just natural. I think now, like everyone, kind of used those terms. So nothing against it. But it is true, we have conversations with his bone marrow transplant doctor about acceptance and if you accept this treatment as opposed to fighting, what's going on with you and that's really what graft versus host disease is it's his new immune system battling the old one. So you know, it really is finding the balance of acceptance and I think it's a great lesson for all of us.
Ashlee:And you don't want to fight your body your body we're going to go back to, to the love thing. I think that's why he's still here today. I think that's part of it is that he's been accepting what he's been going through and loving himself and taking care of himself and trying to do the right things.
Carsten:I think it's huge and loving the people around us and loving our doctors I'm not sure if you experience the same michael and ashley, but, um, you know, when I was before diagnosis, I had a business and I was trying to make it like really successful. After I got diagnosed, all of this became completely irrelevant. It was like more about different things to explore. But in your case, how did your goals and your your life's perspective change from before diagnosis to after diagnosis?
Michael:Definitely a lot.
Michael:I felt like before it was more about, you know, going to college, getting a job and then figuring out my life and working and making money and all that stuff, and now it's kind of just like I just want to survive and I'm still kind of going through the health issues.
Michael:Like I said, I might be in clinical trial soon, so right now my perspective is not so much about going out there and contributing to the world and like the way I was going to contribute to the world before cancer, and now it's about surviving and contributing to the world in a way where I can help change people's mindsets. And instead of doing something more for myself, I want to do something for other people and I want to show people through my journey of living with a chronic disease and with cancer is that you can still do stuff. Like I'm still living with this disease, I still live with like fatigue and issues with my bones, but I'm still in the gym and I'm back to surfing. I'm doing all these things and I want to show people that even with health issues and struggles and whatever it is, you can still live life, find purpose and do the things you love, and I think that's been. Our purpose is just to help and inspire people and show them that all our struggles and all your struggles in life aren't for nothing.
Carsten:Yeah, yeah, I think a lot of people, not only people with cancer, but people in general can learn a lot from you yeah, you've written a book as well.
Carsten:You're motivational speakers. I see you both going through amazing events and it's just wonderful what you do to. You know share this story with the world so people can learn from it, and I love that. It's really, really, really good, thank you. So you know my favorite topic, surfing. What was the feeling when you first pedaled out again or when you were first standing on your windsurfing? I don't know. Did you do both things or did you just do surfing?
Michael:I haven't windsurfed yet, no, okay it's complicated because, yeah, the gear was at like our yacht club and I don't think I even have that gear anymore and it's just yeah, I don't know. But surfing the first time I set up on a shortboard again was like last September, and before that it was probably like in 2020. So it had been like four years really. There were times where I went like on the longboard a little bit like in between treatments, but it wasn't like any real waves, it was like just like half a foot and just like for 10, 15 minutes.
Ashlee:But this was the first time I've gotten back to it and it's just been although I do remember that time, the very first time and it was actually a nurse came with us and we went to the beach yeah, and he stood up on a longboard and his sister was there. His brother was back at college so he wasn't there, but his sister and I were crying watching him stand up on this longboard. But okay, going back to the shortboard.
Michael:That time that was in 2022, and that was that was in 2022, and it was.
Ashlee:He'd been in the hospital for six months, no five months, yeah, so and didn't know if he was gonna live many moments during that. And didn't know if he was gonna live many moments during that time. Didn't know if he was gonna live.
Michael:So when he was discharged and you got up on that surfboard, yeah, that was in 2022 and the last time I surfed before that was 2020. So it's been two years and at that point I was still like really frail and weak. I was like 120 pounds probably and I had necrosis in my knees. So this was before my knee replacement and I didn't think I could stand up on a surfboard without a knee replacement because I had so much pain in my knee. But we're just paddling on the board in the water for fun. And then I just like tried to stand up and I realized I could sort of do it. And I did it and it was like not really even a real wave. It was so small, but it was so small, but it was. It still counted.
Michael:And now it's different, because now, like, I'm getting on the waves and I'm trying to improve and do turns again and get to be like a good surfer. So it's like a. It's different now. Now it's like, okay, I know I can, I can do it, but it's still crazy to me that, even with my body and even after a knee replacement, and I'm still surfing with a knee that has necrosis in it. So my right knee also has necrosis what's also bad and my elbows have necrosis as well. So I'm able to surf even with my body being like a shell of itself, and I actually feel like I'm surfing better than I've ever surfed before.
Michael:So it's kind of interesting the way it works. I think a lot of it has to do with my mindset and like the patience and I think being out of the water really for like, for like basically four years, I just observed so much. I just would watch surf videos in the hospital, watch surf videos at home, and getting back to the water, I was just like I've seen it, I've watched it so much that I just felt like I knew how to do it and it just, it just is there, it's still there and it'll never go away. And it's probably the same for you, like you don't really lose it, you just have to get back to it and like warm up, you know yeah, and I don't really care anymore, like what other people think of me.
Carsten:Before diagnosis I would be like, oh my god, I don't really want to do that, or maybe someone's judging me or something, uh, but now I just enjoy it and I'm so grateful for these being able to just to do it and not be dead yeah, you know, and this is kind of like, um, yeah, very, very inspiring and I'm very grateful for these little moments and it makes you a better surfer, I think because you care less.
Carsten:Yeah, and you're just in the flow and you know you're not thinking about anything else but surfing and yeah, I don't know it's I had this funny moment surfing.
Michael:I'll share this.
Michael:I don't know if I should share this, but I was surfing with my brother like a few months ago and my brother's like a really big guy and I'm like still kind of skinny and we're talking to this random guy and this random guy's like I told him, I told him we're brothers and he's like how are you his brother? You're like the skinny, like weak version of him and I was like, oh okay, it was, it was just funny. But it kind of goes to show that people often don't understand. You know what you've been through.
Michael:So like I don't just like not let people bring you down, because when you're going through cancer or a chronic disease, sometimes people will say things about you because they don't understand. So it's important to also know that deep down inside people just say things. A lot of times as cancer patients, I hear a lot of my friends tell me that our cancer patients, that people have said like some crazy things to them. So it's important not to take anything too seriously that people say, because they probably don't mean it in a bad way.
Ashlee:Oh yes.
Ashlee:I always want to tell people that I don't think people mean to hurt Michael, but they'll say things just because they don't know. I don't think people mean to hurt Michael, but they'll say things just because they don't know. People don't know, and I think that's hard, but there is a big, huge perspective shift that happens. You know, as you said, your perspective on your career goals totally changed, your perspective on making money or whatever it is, or you know, I think, just the day-to-day and appreciating life. And there's a moment that maybe it would have hurt Michael's feelings to be compared to his brother and oh, you're the skinny one. And he was like, yeah, I'm the skinny one, I'm alive though, and that's, that's all that matters. So I think there is a that is one of the gifts, like I think cancer has so many gifts and not that, ever you want, I would never want someone to go through cancer, but there's so many gifts, there's so many blessings. Like you really do realize that. Oh, my God, being in the ocean surfing, how beautiful is that, just like taking a breath today. How beautiful is that.
Ashlee:People don't see as a vascular necrosis. Some people might look at Michael when he's surfing and be like why can't he pop up faster? He'd be a better surfer if he could pop up faster, but he does have. Because of the treatments he's gone through with cancer he does have. His bones are affected throughout his body and that's from his cancer treatment. But who would know? So you know your perspective shifts so much, but that is a gift. You care about the little things less, and then the other side, you care about the other little things more. You care about like sitting down with your family way more, but then you let the little unimportant things roll off your shoulders yes, and you learn to say no to things as well yeah yeah, much easier.
Carsten:michael, what role has ashley played in this whole? I mean, obviously she was the one being beside you the entire time, but I want to hear in your own words, like to the hospital with her and and going through these treatments and her being there has been.
Michael:It's been life changing. You know, when I was diagnosed it was so scary, and it was so scary even with my mom, so imagine without her would have been even crazier. So to have someone like her by my side and be able to care for me and also be my therapist as well, basically it's been amazing.
Carsten:I'm so, so lucky a lot of people don't have someone like her by their side and do you still experience dark moments these days, even though you're on the way to full recovery and kind of like you're going through these challenges? Of course you are, but you kind of like um overcame the cancer challenge. Do you still have dark moments? And then, how do you deal with them when they come?
Michael:yeah?
Michael:No, of course I do, because what I live with now is still like a long-term disease that I'm going to live with for a while and there is really no like end date to this treatment into what I'm doing and it's just constantly like not a battle, but it's constantly like something I'm going through and there's always some sort of issue with my body, whether it's like I just got a biopsy on my skin last week, or my knee is hurting, or I just hurt my back, or something with my disease has just flared up.
Michael:So there's always dark moments. But I think just going back to the root of our message and our purpose always helps, and then finding myself like going to the gym and then trying to do things to keep me normal always helps. You know, I live like a really interesting life now, like I was in the hospital last week for treatment and then this weekend like I went out with my friends like to like a bar and we just like we're normal, you know what I mean. Like I do normal things, but then I'm in the hospital so he doesn't drink, though I can't drink that's my condition, but like I do normal things and then I'm in the hospital.
Michael:So it's a weird life, but I think it's just always coming back to why am I here and what am I doing really grounds me and gets me out of those dark places. Because I'm like, yeah, I'm in a dark place, but this isn't entirely about me. You know, this is about helping other people and showing other people that you can get out of dark places and that it's not just me that's in a dark place. Other people are in that place as well, so I'm not alone yeah, that's a really great perspective.
Carsten:I always see like, um, cancer brings like highs and lows, really dark, low, really big eyes. I'm always trying to stay in the middle, like the middle way is always good, but it's not always easy to stay in there in this middle lane, but uh, there's really dark times. Um, I just had one friday, but then it also always changes again. You know, these are impermanent things that come and go and basically I feel like just breathe through it and it will eventually go away, become a better day again. So if you at least find some joy every day, even if it's like a minute or an hour or you know a few hours, I think it's something positive we call it our pockets of.
Ashlee:They're like pockets of peace or pockets of happiness, and that would be the goal, like sometimes when it was like michael was, it was so hard. We'd be like just let's just find like one pocket of peace today or one moment of joy and we'd focus on that. And then they get more frequent and that's a good thing too. But, yeah, it's hard to stay in the middle lane, very hard Up and down. But that is a good thing to remember is that it is temporary, like the ecstatic joy you're never going to stay ecstatic and also those dark moments. You don't have to stay in the dark moment, like it can happen, but you can come back up again. That's so important to remember that it's temporary yeah, absolutely yeah, yeah.
Carsten:And I know, michael, you've been a really healthy, super fit guy before diagnosis. Have you changed anything in your lifestyle, in your choices, in your tools and activities after the diagnosis?
Michael:yeah, I mean I didn't. I never drank like a lot of soda, but I used to drink soda from time to time and now I just I don't drink soda at all. I try to stay away from like anything that's like bad, like mainly processed foods. I mean I do eat like protein bars and they are processed even now but I try to stay away from just like anything unhealthy. You know, I don't. I don't drink any caffeine, I don't drink alcohol, I don't do any of that stuff. I never really did it before.
Michael:So it's not much has changed, but little things have changed and I'm just trying to do my best to just eat as healthy as I can and just just live. You know like I'm just trying to live because you know there's so much stress on trying to live a perfect lifestyle after cancer and a lot of people are like cut out this, you shouldn't do this. Go in the hyperbaric chamber, people tell you all these crazy things to do and you're just like you know what, whatever, I'm just alive, I'm going to experience life and it brings me joy because so much of this is like outside of your control, so just like controlling the controllables and that's it. You know, just living People will give you advice like don't ever have one drop of sugar ever. Yeah, you're allowed to eat like a bad meal here and there. It's okay like we are very healthy.
Ashlee:We were healthy before cancer. I'm a really healthy myself. I eat food, but like once in a while, you know, if you want a dessert, like have a dessert. It's not like make your life miserable. But I will say michael's choices, it does change your choices. And then I think, when say Michael's choices, it does change your choices. And then I think when you make healthier choices, the more you make those healthier choices, the more you want to make them and the healthier you feel, the better you feel. Anyway, there was a moment before his bone marrow transplant. I remember talking to a mom that her son had been through a bone marrow transplant a couple of years before and her advice to me was like all they wanted to eat were like cheetos and I was like I just love it it was chips sea salt chips?
Ashlee:I think, I don't know it was like something and I was like I don't know about that, like we don't eat that way anyway, and they understood her point.
Ashlee:She was like there's sometimes moments that like you feel like crap when you're going through chemo, you when you go through a transplant, when you go through radiation, and if there's something that brings you a little bit of joy, maybe that that's okay, but I will say like definitely protein, not a lot of processed foods, not a lot of sugar. We make a lot of healthy choices in this house, so the best you can exactly, don't stress about it too much right, because that stress doesn't help yeah, exactly, you know and exercise.
Ashlee:And the thing about exercise is when you exercise you do feel better. And sometimes there is a moment, I think, when you're going through you know you physically don't feel well and you're exhausted. But I've seen michael you know what, going to the gym and he's like he had treatment the day before and he is tired but he's like I'm going to go and I'm going to do what I can do, and maybe today I can't do what I did last week, but I'm not going to judge myself for that, but I'm going to go because I am going to feel better if I go. So I think there's a whole thing about listening to your body, listening to your body. But we all know like now there's just so much research about exercising and moving your body and that just improves your, your. I'm not talking about preventative, even with cancer, but if you're going through it, it helps recovery. So I think for everyone, exercise is just so important.
Carsten:Totally. We just had an episode last week with Phil degree and he was like a stage four colon cancer thriver and he's been diagnosed like eight and a half years ago and he's now running like ultra triathlons and marathons and triathlons and everything and he said like exercise been my lifesaver. So I totally agree with that yeah, I agree with that too such an important factor for healing.
Carsten:So now obviously you are speakers. You have written a book, but you also started the podcast michael and mom talk cancer. What inspired you to do the project and what impact do you hope it can have on listeners?
Michael:yeah, we were inspired to do it because one of my cancer friends did a short podcast, like a little few episodes, about his journey and I saw him do it and we wanted to do something similar because we could go deeper into the story. And then it just became organic that we just started interviewing other cancer patients and we kind of just hope to spread the message and highlight other people's stories who have been through cancer, just to bring awareness. And if anyone wants a place where they can hear a bunch of different survivors' stories, they can just go to our podcast and listen to it.
Ashlee:Yeah, it started out as a way to share just this story. We did six episodes talking about diagnosis and then chemo, and then an episode on the bone marrow transplant and we kind of did that. And then we interviewed the friend of Michael who had cancer and because he inspired the podcast, we really thought we would stop there and then people just loved it and we just kept going and it was part of that theme of the best way to help yourself is to help others. We realized other people were relating to the podcast and it was helping other, in particular oncology, like patients. We had nurses and doctors that were loving listening to it and I think then we just we kept going.
Ashlee:We found our voice this way and it was like TikTok and Instagram are awesome, but with the podcast we could talk for 45 minutes or an hour to someone about their experience, so we could go deeper, and it's been beautiful. It's been beautiful to you know, to talk to other people to get their perspectives. I think it's touched our I and it's been beautiful. It's been beautiful to you know to talk to other people to get their perspectives. I think it's touched our, I think it's changed our experience. I don't know about you, but right, doesn't it motivate you to hear about other people going?
Carsten:through it, love it, yeah, I love it absolutely. And can people get in touch with you as well through instagram or what's the preferred? Way, if they have any questions, just you can just message us on Instagram.
Michael:I might not always see it, but you could also message me or email us, or email us from our website, michaelandmomtalkcancercom.
Ashlee:So yeah, we try to answer everyone. We try really hard.
Carsten:Amazing and I will share these links, obviously all in the show notes, so everyone can check out the podcast and connect with you guys. That would be amazing, like. So everyone can check out the podcast and connect with you guys. That would be amazing, like. If someone had just been diagnosed with cancer, what kind of advice would you both give him or her?
Michael:Yeah, I think it kind of depends on, like the cancer as well, but usually my advice would just be like, whatever it is like, you have to just find a way to, to hold on to hope, because some cancer diagnoses can be really, really tough and you honestly don't know if you're going to survive and some are more, you know, more treatable. But whatever it is, you just have to hold on to the hope and look to the future and look to things. You know you have to have something that's going to keep you going and for me, that thing keeping me going was like initially it was the idea of getting back to surfing, but then it just became surviving and seeing my friends and you have to find hope somewhere. You know, that's just what I would say.
Ashlee:I think also knowing and this is what I didn't know when I went through it with my husband is knowing that you are not alone going through this. I think that's like a really big message, and that was also part of the podcast for us was letting people know you're not alone, and sometimes with cancer it's so. It's like so ironic to me. We want to isolate, we want to like just go into our like little, our bubble of this is miserable and it's so hard and I just have to get through it. But I think it really helps to connect and know that there's other people that actually feel the way you do and not you know the whole, like Brene Brown, like people that you don't have to like fit in, but you like belong with them. And there are people that understand. Sometimes you're going through it and you're like, oh my God, no one gets me, my friends don't get me, my family doesn't get me as a caregiver. I know people don't understand what I've been through as a caregiver, going through this, but then I found ways to have it. I have a support group with other caregivers and that's been a great way to connect and we realize how much we have in common. Michael has a support group that he leads for cancer survivors. I think the connection piece has been really, really important and I love what Michael said about hope because there is a direct link.
Ashlee:We all talk about PTSD and we scans and we have this post-traumatic like here comes the scan, I got PTSD coming, and then there's PTG was like the post-traumatic growth and if you go through something and you can grow, a big key to finding that growth is if you can have hope. And I think having hope is really important for whatever it is, for whatever it is. You know it doesn't mean you know we're not going to, maybe we're not going to change the outcome. We're not going to. Maybe we're not going to change the outcome, but, as you know, you were just saying but you, you're on a path and maybe the outcome either way is, who knows, maybe your cancer is terminal and you're not like my husband, you're not going to make it, but maybe along that path you can still make it full of love and full of beauty and leave an impact.
Michael:Don't live your life with regrets. You know, I think that's like the one of the biggest things is, like just, you want to do something. Don't wait until you're diagnosed with cancer to have to like to do that thing. You know, don't wait till something bad happens to appreciate what you have. You know, like that's why I always say, like, live your life to the fullest. I always think that, like quality of life is just so important and when you're healthy and you're young, like you should spend your time doing the things you can do while you're young, like being active, working on your fitness, you know, surfing, traveling, exploring the world. Like do what you can while you still can do it, because you never know when, like something like cancer can happen and then you can never do that thing again or you end up with some disease or end up paralyzed or whatever it is. So I think in life, like a lot of times we don't live with urgency, when sometimes we should.
Ashlee:And then that's you know. Yeah, that's beautiful what you said, and I think it's also just telling the people that you love. You know, we get annoyed sometimes with the people we love the most. We get irritated or we take them maybe for granted, without realizing it and, I think, really appreciating the people you love, we always ask a question at the end of our podcast, like if it were your last day, you know what would you do if you knew? And everyone, everyone.
Ashlee:The common theme maybe they want to be in Australia surfing, but they always want to be with their loved one. Oh, that's like the common theme. I think everyone across the board wants to be with the person they love on their last day. So I think that's a really good thing to remember is love the people around you. Like, don't wait to tell them how much you love them and think I'm going to tell them tomorrow, I'm going to tell them later. I'm mad at them today. Let it go. It's not that important. Think about what's important. The little things don't matter in the end. What does matter is that we love each other A hundred percent.
Carsten:Yeah, Love that, guys. I love that so true, I really honestly loved it. But yeah, I got a couple of questions for you before we wrap this up, so one for Ashley, one for Michael. A book or resource that provided comfort during the caregiving journey or during the patient journey?
Ashlee:Oh goodness, for me, the biggest resource has been like having the support group. I ended up doing it myself, but the people that have joined the group I facilitate, but we're like we're a team and I think having that support has been amazing. There've been a lot of books. I've read a lot of books along the way, but it was really funny because, of course, everyone knows this book but the subtle art of not giving a. You know Mark Manson. I happened to start reading that when Michael was diagnosed and it was like a really good thing, like what do you care about? That was a great time to read that book. But I just think having a support now we're. Also, both of us are on an app called Cancer Buddy, which is an app that connects survivors with survivors, caregivers with caregivers. That's been another great resource. There's so many, but I think being able to talk to someone is really important and I would say that's really my biggest takeaway talking to one person.
Michael:Amazing. Yeah, I agree. And then for me there was a book called In Between Two Kingdoms.
Ashlee:Oh my, God, that's me too. I read. That's a great book. I add that to my list, Sorry.
Michael:Yeah, by Salika Jawad Very good book. And then also just we had a child life specialist as well at the hospital and that helped a lot. And also just social media connecting with other cancer patients and survivors was really important we were lucky, we had each other as well I mean we're really lucky because we do have a strong bond and like he's my kid, but I really like him.
Ashlee:I think he's really fun to be with. It's been amazing. It's been like that's been like a weird gift. Like I at 18, he know he went to college but then he came back and the last four and a half years we've been together a lot and what a beautiful human to spend time with. I'm lucky.
Carsten:Yeah, I can. I can see that I think I would get along with you guys very well if I was in the area, but I think you both seem very, very lovely and very nice and you know really great human beings, just in general. Uh, I don't know you that well yet, but, uh, it's definitely you will. The energy is coming through. I don't know if it's making sense or not, but I feel like the good vibes and everything, and it's really something that, um, I could already tell when I was um seeing your content on instagram. Um, michael one word to describe your mom's support and Ashley one word to describe Michael's journey. Oh my, mom's support.
Michael:I'm trying to think of a word. There's not one word, but I would say consistent, like it's always there.
Ashlee:One word. Oh my God. I have so many millions of words for Michael but it has always Actually wait.
Michael:the word is unconditional. Oh, that's very sweet, that word's better that's making me cry, I don't know.
Ashlee:It's got to be love, because it's always coming back to love. You know, I want to say resilience, but it's. But the reason he's resilient is because he's so full of love and I think if I think of every word that I would have to describe him the reason he can do the things he does is because of love. So I'm just gonna have to go with it cool, cool.
Carsten:I like that, michael. If you could surf with any historical figure, who would it be?
Michael:any historical figure, any famous surf anyone.
Carsten:Who's alive or dead doesn't matter anyone anyone.
Michael:Yeah, that's a lot of pressure, like I'm supposed to say my dad probably. Yeah, I'm gonna. I'm gonna say my dad. I'm supposed to say my dad probably. Yeah, I'm going to say my dad. I never surfed with my dad. He never even surfed. It would either be my dad or my brothers. Obviously my mom, but she's going to surf in a few months when her hip is better, so I will surf with her again, but my dad or my brothers.
Carsten:Yeah, I'm taking my six-year-old son surfing and he's getting used to it now. Awesome. He can stand up sometimes, but not very often, but he loves the waves, he loves being in the water, which is the most important. I don't want to put any pressure on him, but my biggest goal I would love to go surfing with him one day. It would be amazing.
Ashlee:That's so cool. Where do you surf?
Carsten:Well, actually in England we have waves.
Carsten:I live about two and a half hours away from the first wave, okay, um, we have a wave pool in bristol I don't know if you know these wave pools, uh, bristol, which is like an hour and a half away drive still a lot, but uh, that's where I often go and last year during my treatment I was often there like three times a week during double sessions and, as you know, obviously they not like the ocean, not as spiritual, not as nice, not as challenging as the ocean, but at least something that gives you a consistent way where you can at least you know get back into it and I'm looking forward yeah yeah, is it?
Michael:what's it like videos?
Carsten:yeah, I'm sure, yeah I share some videos with you afterwards on instagram. But it's really cool. You have like a beginner level like waikiki beach waves, and then you have like all the way to like barreling waves really it's really amazing and different groups, and you basically have no issue with getting waves because everyone lines up and everyone is taking their turns after one after the other. So it's really nice. Actually, you don't have this stress of you know dealing with locals or people you know who want to occupy the surf spot, and it really makes you better. I get about 12 waves and 12 waves in an hour, so that's a lot. It's roughly five pounds or five dollars a wave quite expensive, but it's so worth it. And yeah, I'm going to cornwall again soon, so cornwall is only a few hours away, but they have the best waves in the uk at least. And, um, how are the waves in florida? I mean, kelly slater was born in florida, wasn't he?
Michael:I read this book yeah, dreams where we, where we live, is like pretty bad, but we get waves here like something like not consistent, but there's yeah, there's waves like probably like in winter I'd say like a good week. We'd have like waves three days a week on a good week, but they're never like. They're great like twice.
Ashlee:We can drive a few hours like yeah kelly slater is from and we can.
Michael:Yeah, like three hour off and three hours north from here, it's pretty good. Yeah, no, it's amazing.
Carsten:What do you think is the the biggest contributor to the healing that you experience?
Michael:the biggest oh, it's definitely like was there's different healing was mental healing and physical healing, and physical healing is just to the healing that you experience. The biggest oh, it's definitely like was there's different healing it was mental healing and physical healing. And physical healing is just nourishment and activity. It's like nourishment and then being active and lifting weights and cardio. But healing mentally is just about like therapy and time and processing and thinking and being with your friends and just living and figuring out that life is simple. It's just about living. It's really nothing else.
Ashlee:And I love you, like with the yoga thing. Yeah, yoga and meditation has been very important as well, 100%, you know.
Carsten:Yeah.
Ashlee:Yeah.
Carsten:Guys, wonderful, wonderful. We're hitting the hour here and I just want to say thank you, thank you, thank you. Experienced just myself listening to you so much positivity and so much energy, and I love how you described the journey, which has been a tough one, but you made the most out of it, and I love that and I think, I wish, I hope, you both live a beautiful, wonderful, long, healthy life, live a beautiful, wonderful, long, healthy life and, uh, you're gonna be, uh you know, inspiring many other people to go through this with dignity and with hope and with motivation and with the right mindset and the right tools. And I just want to say thank you. I love that. I really, really appreciate you being here. Thank you so much thank you so much.
Ashlee:You are beautiful and we'll definitely connect and I will connect with your wife yeah, please do so.
Carsten:What's the name of the support group? Before we shut down here cancer survivor support group. But the link is through discord oh, okay, it's a discord group same same, okay, so it's really easy coping for cancer caregivers wonderful. I mean that's going to be a great resource. I'll share this in the show notes. Yeah, have a wonderful, wonderful week and good luck on your treatment next time and uh yeah, both of you just stay as you are, you wonderful human beings.
Ashlee:Thank you so much take care bye.
