Thank you to the Moore Family for their generous support of our osTEAo podcast and creating a space for young adults experiencing cancer to share, relate, and heal together.
More info on patient advocacy opportunities discussed in this episode.
Apply for the MIB Agents 2025 Junior Advisory Board! Applications are due at 11:59 PM EST on January 20th, 2025. https://forms.gle/hTCqKuPLHkntBw1U6
Share your story with our congressmen and women to advocate for several key policy issues that impact children with cancer. Join MIB Agents for Childhood Cancer Action Days on Capitol Hill, February 27-28th. Email linda@mibagents.org for more information.
Mia: Hi everybody. Welcome to osTEAo that's with a capital TEA, where OsteoWarriors in treatment and recent survivors spilled the tea on all things osteosarcoma and cancer, from the adolescent and young adult patient perspective. Listen in on our honest and personal conversations about our osteo experiences, stories, and who knows what else. We tend to get off track. This podcast discusses all aspects of the young adult cancer experience in a conversational format. Audience discretion is advised. Please like and follow MIB agents on social media for all of the intel and hot goss.
Sammy: Welcome back guys. Happy new year. Happy 2025. We're super excited to have everyone here again as we kick off season 4 of our osTEAo spilling the tea on all things osteosarcoma and AYA cancer podcast. We are thrilled to announce a generous sponsorship from the Moore family to support this podcast. The Moore family wanted to share what motivated them to sponsor osTEAo and we would like to share a few words from the Moore family:
Supporting osTEAo, spilling the tea on all things osteosarcoma and AYA cancer, a peer-to-peer webcast for young adults. Battling cancer means the world to our family. Our daughter Sarah an osteosarcoma warrior has found comfort and strength in hearing from others her age who have endured similar struggles.
Cancer is not only a battle of the body but of the mind, and knowing that others share and challenges of both physical and emotional toll can make a profound difference. The connection that these young adults form with one another helps combat feelings of isolation and gives them a space to share, relate, and heal together. As parents, we see firsthand how much it means to Sarah to hear from those who truly understand her journey. It's comforting to know she is not alone, and it's inspiring to witness the resilience of these incredible young people. We are honored and pleased to sponsor this webcast, as it provides an invaluable platform for hope, camaraderie, and empowerment.
Our family believes in the power of connection and strength that comes from shared experience in the fight against cancer, and we are grateful for the support MIB has given Sarah and us as we navigate her journey.
Our deepest, deepest gratitude to the Moore family for their support. Now let's get on with our first episode. We cannot thank you guys enough and we're super, super, super excited for this season.
Mia: Beyond, totally excited, so thankful. It makes me so happy that when we first started osTEAo, we didn't know how many people would see this, hear this. Be a part of our little community and and it's grown so much more than we could have ever imagined, and so the Moore family, thank you so much for continuing to give this gift to the osteosarcoma community, and Sarah, we hear you, we see you, we are there for you. Anyone who listens, we get it. We may not get it a 100% but probably more than the average person and we're in your corner, and it's so great to be here, so enough with my little sappiness.
Let's get on with the show, so great news JAB applications are open. JAB the hottest club in town is our Junior Advisory Board here at MIB agents, so you would be applying for the 2025 Junior Advisory Board. They're now open. You must be 15 to 22 years old, have experienced osteosarcoma as a survivor, patient or sibling. Have made significant contributions to at least 2 of the 3 categories that MIB holds dear, community funding and patient support and education. Be able to serve a term of at least 1 year and meet the monthly Zoom call, as well as the in-person MIB FACTOR osteosarcoma conference.
You have served on the JAB in the past, you are eligible to reapply. You want to make sure that you strive to not only continue to do this work but to grow those contributions in the future years. MIB agents Junior Advisory Board responsibilities include having an active role in voice and MIB agents, which is how I got my start. I obviously aged out of a Junior Advisory Board but was a part of it for 2 years, and then VP friends for life seriously. To help build current programs and grow our current programs. If you want to be on osTEAo here's your chance, and to help design future programs to meet the unique needs of OsteoWarriors and their families. To abide by our code of ethics and to be able to attend our monthly meetings as scheduled.
If you would like to apply for the MIB Agents Junior Advisory Board position for 2025, please fill out the form that we will be I guess attaching to our website. Applications are due at 11:59 Eastern Time. I'm a West Coaster so this is 8:59 West Coast, 11:59 East Coast. I don't want to get those deadlines mixed up. January 20th, 2025. We will be attaching that Google form somewhere where you can access it. https://forms.gle/hTCqKuPLHkntBw1U6
Sammy: Yes, thank you so much. Actually I'm the current Junior Advisory Board president for 2024 and Sloane and Matthew are also a part of the Junior Advisory Board. I think all of us have nothing but good things to say about the Junior Advisory Board. Super exciting and of course we'd love to grow our community, so if you feel very passionate about advocating and the cause that we just feel very.... the word is passionate. We're so passionate about making things better. Please, please, please apply. We actually just announced our leadership board and I'm very grateful because MIB has given me the opportunity to be president for the 2025 Junior Advisory Board again, and the Vice President will be Mackenzie, and if you haven't heard Mackenzie's story, she's incredible.
She's gone through so much and she's just truly such a warrior, and such an inspiration to all of us, so if you guys feel compelled to join our community, it's super, super fun. There's a lot of really great things that we do within the Junior Advisory Board, so please, please, please fill out the applications and make sure you do it on time. Like Mia was saying, the time zones kind of trip me out, so just see where you're at, see where your time zone is and make sure you get those applications in as soon as possible. Join MIB on Capitol Hill for Childhood Cancer Action Days February 27th to 28th, 2025 in DC. A lot has gone on as far as legislation and bills and it's very, very important for us to continue our advocacy work in DC.
MIB Agents is assembling a team to represent MIB Agents for Childhood Cancer Action Days on the Hill in Washington DC. This Winter Action Days 2025 are a two day in-person event in Washington, DC. Thursday, February 27th is a required training day. During training, you will hear from guest speakers and meet fellow advocates to help prepare you for your Capitol Hill meetings on Friday, February 28th. If you ever wanted to share your story with congressmen and women, this is a great way to share that experience. We are at a critical point on several key policy issues that impact children with cancer, and we need a strong showing of advocates at Action Day 2025.
Sharing your story with members of Congress will ensure that the voice of children with cancer is heard loud and clear. The Alliance for Childhood Cancer has a limited number of scholarships. Applications are due January 6th, 2025. Please contact Linda Kennington at linda@mibagents.org for more information.
We also would like to ask you guys to submit ideas for future topics. If there's anything that you would like us to discuss on this podcast, so you think that it's important for us to kind of have a conversation about, then please, please, please reach out and submit ideas because we're always listening and we're always open to input.
Mia: As you can tell, Sammy and I were big fans of Sabrina Carpenter in our Spotify wrap for 2024 with the amount of times we say, please, please, please, so we are on the same wavelength.
Sammy: Please, please, please. Yep.
Mia: Anyway, let's please, please, please kick this show off. It is season 4, episode 1 people. I cannot believe we've made it this far, and just welcome back to another great year of osTEAo and us just gabbing and talking about all the crazy things that happen in the cancer community, as people who are young adults, and adolescents and all that jazz and just everything we do, so it's time for our original and first segment. What's the tea? No, like literally what is the tea? We're going to go around and share what preferably tea or beverage we're drinking, and give a review and rate it.
We'll also share our name, age, where we're from and what we're up to. Brief osteosarcoma story overview and just what we're drinking and rate it 1 out of 10, so as many of you know I am Mia Sandino. I have been a co-host of osTEAo since its birth, and I'm very happy to be here, I am 25, almost 26. Thankfully got my insurance figured out because my birthday's in February. Favorite birthday present ever getting my insurance ripped away when my cancer comes back, so much fun. I am from the beautiful sunny Los Angeles, California. I believe it is seventy one degrees outside currently, which is crazy because it's January.
Can't believe it's January. Wow. I don't know what time is. I am currently doing an online certificate through Syracuse University in cannabis studies, obviously that came through my connection with health and cannabis, and health and cancer specifically, so it's been really, really fun to get into that. I'm actually starting in science and health component of the program next week, so really excited to to start that. Obviously I am 25 and live in LA so this is all very legal. Anyway, I was diagnosed with osteosarcoma in September of 2018 in my right proximal tibia. I've had a limb salvage, two thoracotomies, over thirty ablations, including 1 like just 78 hours ago.
Where they just take probes and freeze the tumors and it's quite nice, but this one was a little rough on me, so a little short of breath, and on some meds so I'm sorry if I'm a little loopy today, but because of everything I've been through in the past few days, I'm just drinking water. I had some tea earlier today but I feel like just getting straight up water as my fluids is good, and it's a perfect temperature right now. Honestly, 10 out of 10 water is the most adult beverage as far as I'm concerned. Sammy, what do you got?
Sammy: Very, very important to drink water after everything you've been through. I am Sammy Ulloa, I'm 22 years old and I'm also from Southern California, but I'm from Redlands and I might have you beat because I checked the weather right now and it's 72 where I'm at, so it's a warm winter here in California, but that's pretty, pretty common. I currently dedicate a lot of my time to MIB and I do a lot of advocacy work and I am going back to school. I am debating whether or not to switch my degree, but that's a conversation for another time. I was diagnosed with osteosarcoma in my right proximal tibia in August of 2022 when I was 19 years old. I underwent treatment until May of 2023 and halfway through my treatment in November of 2022, I underwent limb salvage surgery, so I currently have an internal prosthetic in my right leg.
She's holding it very, very well. I had another surgery back in January of 2023 actually to strengthen my leg, and kind of fix a tendon in there so it doesn't buckle as much. Very grateful to my team. I'm doing very well now, thankfully as far as stability, so yay for science because I wouldn't be where I'm at if they wouldn't have fixed me I guess. I'm currently drinking juice because like I said it's 72 degrees where I'm at, so it's not really the ideal temperature for tea, but I'm having cranberry and pineapple juice. I kind of mixed it, a little concoction. I would rate it pretty high, I'd say like a 9.5, but I'm biased because I really, really like cranberry juice.
I would only take away a half a point because we bought the one that's both, or actually both the pineapple and cranberry juice are like the light one, so like less sugar. I want it. Like next time I go to the store I'm going to have to get the full sugar one because it's just not the same, but overall really, really great. Sloane, if you want to go next and introduce yourself and tell us about your story.
Sloane: Yeah, so my name's Sloane Dyer. I'm 20 years old, I am originally from Chicago. I'm currently in Atlanta where my family now lives, and I go to school in Denton, Texas at the University of North Texas for jazz performance. I was diagnosed in with osteosarcoma in December of 2016 when I was 12 years old. I had MAP protocol and I initially had a limb salvage. I had that for 6 years but it caused a lot of debilitating pain for me, so I later had an elective amputation of my right leg above the knee and now I am just waiting for a corrective surgery because I had some complications, but besides that we're doing good. We're in school and I'm currently drinking some throat coat tea for my singing chops, because it's very dry and gross in Atlanta right now and it's just comforting as well.
I would probably give this one like a 9 stars out of 10. It's kind of extra steep, so it's very, very licoricey, so it's not the best but in general I love this tea. What about you Matthew?
Matthew: Hi, I am Matthew Ceelen. Thank you Sloane, and I am from Milwaukee, Wisconsin, the Milwaukee area I should say, but I go to UW Madison, go Badgers. I study biomedical engineering and I'm going to graduate in just about twenty weeks, which is very exciting. I'm 22 as you can probably guess, and I don't really know what I'm going to do for my next year, but that's a different story. Seven years ago I had osteosarcoma. I was actually playing football and I got tackled and my arm snapped, my left humerus and I was like, "That's not right." Long story short I had a year's worth of MAP treatment, not one, but to 2 limb salvage surgeries and a couple other surgeries.
You know how that goes, and yeah, so I'm 7 years post, well 6 years and 4 months post treatment and yeah, just living life, so I am drinking masala chai. I don't remember where I got this. I go to a lot of tea stores. I love tea so much. This is actually a mug I got in Barcelona, but I love tea so much. This one I think I should have steeped it a little bit more, but I'd give it probably 8.5. I think I like this type of chai the most so yeah.
Mia: Well, all fantastic options as far as I'm concerned. Throat coat is a personal favorite. I also love chai.
Sammy: Yeah, that's a pretty good, we got a pretty good line of, we have water, we have juice, we have over steeped tea and we have under steeped tea, but we're enjoying it. We're having a great time nonetheless.
Mia: We're the broad spectrum that is osteosarcoma on this podcast today, so yeah let's let's get into the meat of things. I'm so grateful that you guys are here today, and I know we're talking a lot about cancer fatigue, and a lot of us talk about the Cancerverse. A lot of people are like, oh, there's the MCU, the Marvel cinematic universe and no, no, no. The most iconic, and infamous in my opinion is the Cancerverse, and cancer fatigue really goes hand in hand with being a part of the Cancerverse.
Whether you are a caregiver or a supporter of someone going through it, or if you are someone who actually is someone who has cancer, and it's very, very difficult and it's exhausting, and that's kind of what we wanted to talk about today. It's a little bit of a trick question, how do you escape the Cancerverse? And in my opinion at least, and if you guys have different opinions please jump on in, you can't. There is no escaping the Cancerverse. Even if you've been in the clear for a while or you had a bad scan yesterday, it doesn't matter. There's always a small part of us that feels like the other shoe is going to drop, that we're waiting. My mom and I were actually just talking about this at lunch today, and she was saying how she feels like there's a boulder that's up on the hill and that we live in this village under the hill, and that at some point the boulder's going to break loose, but we don't know when.
I feel like that is kind of just that angst that we just all feel, and it's just kind of this fear that something could happen and it's like, yes, I've gone through so much, but what if it happened? It's this constant back and forth and it's exhausting, so all of this is a long-winded way for me to ask you, when do you feel like you are emotionally or physically the furthest away from your cancer? Like what fully pulls you out? Like if you are in a funk, what is your go-to? Like what pulls you out of the Cancerverse for a while, makes you almost forget it exists enchants you under its spell, and Matthew let's start with you if you have an answer.
Matthew: Yeah, sure, I'll give 2 answers. I'll give while in treatment and then post-treatment. While in treatment I think the thing that I always kind of relied on was, just kind of doing things that I used to love to do before treatment and it kind of just took me out of it. I remember I love Conan O'Brien back when he had a show, and then also I love Top Gear, so like old British car show, and I remember I would watch Conan shows with my family, and especially his travel shows, and we were always able to just kind of sit back and then laugh, and I think that pulled me out because just during that time I love Conan so much. My whole family loved Conan. We were just able to do things that we've always done and we've always loved to do.
There's nothing that was kind of blocking our way from enjoying it, and so that was kind of a nice escape, so just doing things that I used to love to do and keep on doing them, and then also in terms of after treatment because I don't want to say misconception. A misconception that I had I should say, would be I thought, okay, I'm going to do a year's treatment and then that's going to be it. That'll just be a chapter in my life, and I think a large part of after treatment, especially right after treatment but honestly it went on for 2 years, 3 years, was just trying to figure out who I was after treatment, because it obviously it changes us. Even after 2 years you kind of have this feeling if I meet someone new, oh, are they perceiving something about me because I had treatment? Are they acting a certain way because they just found out I had treatment? And so I think a large part of that was understanding that having cancer, and being a cancer survivor is not just something of note. It's not just, oh, that's just a little bit about me.
It is truly who I am. It's a large part of who I am, and I think for a large part of my life I've always wanted to just say, okay, I'm going to push it away but truly understanding that it is who you are, and you really can't escape it is something I've grown to not only accept, but be proud of. That I am 6 years and so many months post-treatment, and then I can actually give back to the cancer community.
Mia: That's beautiful.
Sammy: That's really beautiful. Thank you so much for sharing. I think what you said about trying to I guess redefine yourself post-cancer, and like you're trying to figure out what your identity is because I think for a lot of us, there was things prior to cancer that really like defined us. Like when people would talk about us, it was like, oh, like that's her and she does this, but then after cancer it's like a completely different ball game, so it's really important that you brought that up. I like what you said about giving contrast and giving an example of what pulls us out during and after treatment, because for me it's kind of similar to you during treatment, what would pull me out?
I remember my sister and I and my mom, we used to watch Dancing With the Stars and that was during like my first half of my treatment and it was like once a week, but that was one thing that we used to always do together. My sister would bring her iPad to the hospital and we would sit there and watch it and just like being able to kind of talk about something, and focus on something that's not cancer related, and just feels like a sense of normalcy is something that really pulled me out, because for just like those sixty minutes of watching like celebrities dance, stuff like that, sometimes I would kind of forget where I was, or what was going on and I was just focused on something else that brought me joy, and would remind me that this was my normal beforehand.
I used to always watch shows with my family and I can still do that, and then as the year turned of course, it's Bachelor/Bachelorette season, so just reality shows for me were a big thing because it was normalcy. For me, it felt familiar and it felt like something that I could still do even during my cancer journey, and then afterward, what pulled me out or what pulls me out is just doing things with my friends, or hang out with people that don't see me as just like the cancer, because it is a big part of our identity. Like fortunately it becomes a part of you that just never goes away.
Like you don't escape the Cancerverse. Like we're in it and we're not getting out of it. We're just in a different part of it, but I like going to for example going to a bar and sitting there with my friends and like laughing and having fun. For a second I forget that I have a piece of metal in my leg and that if I were to roll my jeans, like there's a huge scar running down my leg. It's just different things that feel normal and make us feel normal , because I think after cancer the word normal kind of just gets thrown out the window because nothing's normal about our life anymore. We still have appointments. I still do physical therapy. It's been now... I was going to say 2 years, but now since 2025, it’s my third year of physical therapy.
It's something that never changes, but it's the little instances where you can kind of just be like with people that you love, or doing something that you love and you truly do forget. I kind of find too that my cancer gets brought up a lot like every single day. Somehow I talk about cancer or somehow I think about it, whether it's on social media or talking with a friend, or sometimes I'll go to a store and someone will say, oh, your hair's so nice, I love the length and like, why'd you decide to cut it? That just happened a couple days ago, and I stand there and like I share part of my story, but it's just that just emphasizes the whole Cancerverse thing, but it's just really nice to be pulled out every once in a while and just feel as normal as we possibly can.
I don't know if Mia or Sloane, what do you guys think? Like what pulls you guys out?
Mia: I just want to say like having those moments that pull you out and you forget. I have those moments and they're few and and far between, but it's really nice. It's like I'll say I'm out with friends, or I'm at a friend's house or even if I'm at home and I'll get up, just, just to grab something for someone and I'll fully forget that Rodney is there, meaning my leg, and we've been together for over 6 years now, we are very close, but he does give out on me pretty frequently and it's very frustrating even though he's great construction, solid love the guy. It's weird when you get pulled out, you're so excited and you're like, oh, it's completely either in the back of your mind or just gone just for those few peaceful seconds.
Then you stand up and then your leg gives and then you're right back into it, and so I just wanted to like bring that up because it's like, yes, we have these amazing moments and they're so important, but it's so funny sometimes when you get snapped back into. It's an ironic funny more than like a ha ha funny, but it really just shows how great those moments are, and how much you can appreciate them when you are kind of snapped back in, because then you're like, wow, how great is this? Like I'm with my friends and how nice it is it that they're so great that I was able to forget the trauma that goes on in my life, and the trauma that I've experienced even for a few minutes or an hour or however long it is.
Or you escape into a show or what have you, and it's just so beautiful, and so I just think that it's so important to find those moments and that's why our community is so great, and Sloane, I know I definitely want to hear what your tricks are.
Sloane: Mine have actually like kind of stayed the same since I was in treatment. Before treatment I was really into baseball and then immediately I got into treatment obviously you can't run, and so I immediately kind of just switched to music. Obviously it was not easy at all but I was already in like the concert choir at my school. I was already in orchestra so it made it an easier switch since I was already established in those areas, so there was only 1 thing that really got me to completely avoid cancer when I was in treatment, and that was my concert choir rehearsals. They were like the hour before school started on Fridays, and I would go and I would have such a fun time.
My teacher found ways that I could dance in my wheelchair, and then also adapted once I was able to walk on my limb salvage, and I just loved every bit of it but as Mia was saying, the snapback to reality especially with that was so fast for me, because on Fridays were the days I started my chemo, so I would go for rehearsal and then immediately leave without going to any of my classes, and then go to the hospital for chemo, and so it was like it was such a nice reprieve right before chemo started, but it also kind of was a little bit brutal of like, you're getting your one reprieve and then you're right back into chemo, but now that I'm older and in college I think the answer is still the same.
It's when I'm with my friends, immersed in my music, that kind of experience is what helps me take away the most. Though as my pain has been ramping up, it's harder for me to completely not associate any time with it, because no matter what, I'm usually spending at least a little bit of brainpower about like, okay, how can I make my leg the most comfortable? How can I get what I need? But I think especially in college it's become more apparent to me that like I represent cancer to a lot of my friends. They have no other experience with it or very limited, and so it makes them curious and I really don't mind that, but it makes it a little bit harder to get away from it because I recognize that I'm the only child amputee, or child amputee I've seen on campus.
The only other amputee I've met is like a person who works at the dining halls and he's like 60, and so I don't have anybody really that I talk to about it, that knows about it, and so it's kind of hard to completely step away from it even when I'm with my friends, because I'll say stuff that like to me isn't related to cancer, but to them it is, and then I start having to explain it, so I think why I like while I'm with the same friends after being in music, I find that while we're doing something else, it's way easier to completely just take my mind off of it because there's no questions coming to me about like how it's impacting me and all of that.
Sammy: Yeah, I feel like we all kind of look forward to those little moments of relief and those moments of forgetfulness, before cancer kind of like snaps us back into reality. Like the reality check we get, whether it's like you were saying like someone asks a question or our knees buckle. Like it can be instantaneous, but it really does bring you back because you're like, oh, I felt normal. Like it's an odd kind of verse that we're in, it's weird but I feel like we handle it best we can. It's really nice to have those little moments. Like I look forward to those little moments where I kind of just forget, like it's like it's all whimsical and blissful because I'm like, la la la I'm okay, and then, oh, knee buckled I remember that.
I'm in the middle of a JC Penney and I have an internal prosthetic that just almost put me on the floor, so Matthew, I know you looked very excited to make a point.
Matthew: Yes, so a couple things, Sloane it's funny you talking about treatment in school, and that's a totally different topic, but also I had chemotherapy my freshman year of high school, and I like school. I know it's weird but I like school. I like going to school, obviously I wouldn't really do too much work then, but I really I would love to, every time I would be out of the hospital I'd want to go to school just because I was a way of just kind of feeling normal. Now, trust me I would sleep through lectures and my teachers didn't care, and then also I would have treatment and they would talk to me after class. They're like, "Oh, so how long are you going to be here?" And I would be like, "Oh, a day and then I'm going to be gone for 2 weeks."
It was just how it was but I loved school just because I was away to get out of just kind of the cancer universe at the time, and just feel like a normal guy, and then also you were talking about on campus being a cancer ambassador. From my lifelong friends to people who I just meet, when I talk about I have cancer they feel really apprehensive of asking me questions, which for me I don't feel bad about it all. Like honestly I love answering questions because it's nice to just talk about my experience, but also I would prefer that than I guess I prefer something I know than something I don't know, so I love to ask questions, or I love to answer questions than to have people perceive something about me.
It could be any question. Like I remember there was one where like someone said, when you have chemotherapy does it hurt when it like goes inside you? Like, no, that's not really how chemotherapy works, but I just love answering questions because again that's more communication and interaction, than just kind of going about my life, and then me thinking about me having cancer and then saying to myself, "Oh, are they thinking about something about me now? Or something else." But yeah really that's how you brought that up.
Sloane: I agree. I love being asked questions, but it's so nice to have like a little bit of reprieve because since I'm in so much pain most of the time, it kind of like spurs me to think, "Oh, my leg sometimes." Not all the time, obviously, but I think my friends ask me so many questions. I love my friends because my wheelchair and like the medical stuff around me has been kind of crappy lately, and every time I talk about it, my friends are like, "You should sue, just sue everybody. The doctors, the technicians, sue everybody." And they bring such lightness from the questions they ask, but yeah I love it anyway.
Mia: You really hit the nail on the head with that, we are just walking ambassadors whether you like it or not, because I had my ablation on the 2nd, with everyone traveling I couldn't even really see my friends because so many people are traveling from across the country, and people are having New Year's parties and all this stuff, and I couldn't risk getting sick because almost everyone I know is sick right now, and I just couldn't risk it, and so my mom and I decided to make New Year's as nice as possible at home just the 2 of us, and we made some fun drinks, we watched some funny shows, we re-watched Sabrina Carpenter's Christmas Special.
We just did stuff to have fun and to be silly, and one of the things that we did, which is actually ironic because when my mom went to first see the show Wicked, she first went to see it on Broadway. She was living in New York, and she walked out during intermission. She hated it. Fast forward to last November when it comes out, we go and see it. We loved it, and so it started, it came out on, Apple TV or whatever, Amazon to purchase, not yet to stream but to purchase, so we're like, "oh, we're buying this, we're buying this for sure, and we're doing the sing-along version." So that was our New Year's Eve plan, and this is a long-winded way of me getting to the line in the movie, in the show, are we born wicked or is wickedness thrust upon us?
I feel like it's a metaphor for so many. You can put so many different pieces in and we also joke with the killer song, are we human? So are we human or are we cancer is what my mom and I sing instead of are we human or are we dancer, and so it's how much of the cancer are we, you know what ? Like we're not born with the cancer, the cancer's kind of thrust upon us and we just have to deal with it, and suddenly it's this label that we have that we can't shake whether we want to or not, unless we just want to lie to all the people in our lives and why, so that was just kind of a point that I wanted to bring up is like, yeah we are the ambassadors whether we like it or not.
Thankfully we are all here because we do enjoy sharing our stories and our messages, and to be a part of this community, and that's why the 4 of us are here today on this call, just to let other people who are in the community know that it sucks, but we're here and we're in it together, High School Musical 3 vibes, we're all in this together and we can help each other get out of the Cancerverse for a while, and get out of our heads. Even when I'm with my cancer friends. It'll be like, "Isn't it so crazy that we know each other through this awful disease, yet we have conversations that have nothing to do about it?" And it's amazing how much adversity brings people together, but at the same time it doesn't.
Sammy: We always say like the cancer community, the cancer club's like the best but the worst club to be in because what we have to go through to be in it, but then once we're in it like the community's so beautiful, but as you were talking Mia, I was over here. Like if I had a tail, it would be wagging. You were saying all of my favorite words, you were like Wicked, Sabrina Carpenter, but I love that you brought up that line because I always think about that. Like I always compare it and I think I do it a lot. I don't know if other people do but I always try to like relate things kind of to like my experiences, and I'll listen to music sometimes or I'll watch movies and hear lines, and I'm like, how does that relate to my personal experience?
A lot of the time it's tied back into cancer, and I think it's really cool how all of this stuff like we interpret it differently based off our lived experiences, and for us a lot of the time it's cancer, but I love that you tied all of that together and then what you guys were talking about being like ambassadors and advocates, like within our little community because we have a very rare, or we had/have like very rare type of cancer and it's also a type of cancer that leaves us physically disabled where people can see it, so it's kind of unavoidable for people to see like our scars or our prosthetics and like have questions and curiosity. I think we all agree that we'd rather just answer it instead of having people just stare.
Then it also is another form of advocacy and raising awareness, because a lot of the times when I tell people like, oh, I had bone cancer, osteosarcoma, most people don't know what that is, so it's really, really beautiful that we're all kind of on the same page about that, and I'm like so proud of everyone for just taking all of that and turning it into a positive, because I know sometimes it can be a lot to constantly talk about something that was so heavy and was so impactful for us, but I think the fact that we're taking these steps and doing these things to make things better, it's just so beautiful to me. Like again, if I had to tail it would be wagging guys. Like I'm so happy right now. I love that we're doing this.
I love being on this podcast and you guys too, it's such a fun group.
Mia: No, you guys really are a great group, and it's just crazy walking around it, and knowing this will always be part of our lives, but at the same time it's just so beautiful coming together and we all have these beautiful lives outside of the cancer, and it's crazy that the most difficult thing is what pulls us together, and that's how you really know you can trust someone. I took a psychology of happiness class. Matthew, you said you went to UW Madison. Thank you for specifying Madison, because I went to the true UW, the University of Washington and no tea no shade. Actually yes tea no shade, so I took a class called the Psychology of Happiness and it was talking about happiness within relationships, whether that be platonic or romantic.
Or sexual, however you want to define a relationship. What was the point I was going to make? There's a point I swear. Oh, I got it. So basically the true way to know if someone will be a healthy, long-term partner for you, as any type of relationship, even just a friend, is how they respond in times of crisis. Financial crisis, emotional crisis. Like a death of a close loved one, sickness, things like that. Those are what really define a crisis, and if someone is good to you in that scenario or how they react to that, tells you a lot about who they truly are deep down as an individual, and I know that that shock is scary, so I'm not saying just the immediate reaction here, but you can really tell a lot about someone.
I feel like that's what makes our community so strong is we get it, and we see what the other people are going through, and I'm not saying we know how to respond, because people always ask me, "What am I supposed to say to my friend who was just diagnosed?" And there are things not to say for sure, but there's really no wrong answer here. If your friend is already down to make jokes, make jokes with them, but just try with caution. I don't know, I think it's so great that we have this beautiful community and that we can be pulled out and we are these ambassadors, and I'm just so proud of every single person on this call, but before I start breaking down in tears because I love you all, what are your favorite things your support system does for you that you do with your support system?
I know this is a fun one, so it's like just with your friends or with your family, you can talk about a tradition or just something you like to do on a random Tuesday. What is your favorite thing when you're down that your support system does for you, and Sloane let's start with you.
Sloane: Okay, I think one of my favorite things currently that my support system does, is They just watch things with me because currently I'm unable to walk. Movement makes my leg hurt exponentially bad, and so there's a limited amount of things that I can do that I used to be able to do, so one of the things that I really appreciate about my friends and family, is they like spend time with me even if we're just like doing coloring books or watching a stupid TV show that nobody really cares about, or anything like that. Especially letting me dictate part of the mood as well. Like they don't force me to feel happy or like to talk to them, or not to talk to them during these times.
They just let everything be how it is and just be with me, and I think that's the most important thing, is like letting me be a feel as okay as I can and feel supported just by them being there.
Sammy: Yeah, that's really beautiful. I think that's the most important thing, and how you was saying the people that you love doing activities that you can do, because a lot of the times there's stuff that we cannot do and it feels so nice when it's like this unspoken... how do I put it? It's just we don't even have to talk about it. Like I never have to remind those that I love that there's certain things that I can't do, and that sometimes this fatigue that kind of stays with us. Even like post-treatment and everything is like still there. There's certain things we can and can't do that they always accommodate and they never make me feel bad for having to do things that I can do. Even though I'm pretty sure there's thousands of other things that would probably be more fun.
I think that's the purest form of love, like thinking about you and it's so touching when people are that considerate. It's like the compassion and it makes me feel so seen and I never feel like a burden to like my family or my loved ones, when like Sloane was saying like sometimes you want to sit there and just watch the stupidest show out there, just like a really, really like weird movie, but they sit there and you never feel like you're forcing them because at the end of the day, like those that love you will just want to be around you. It doesn't matter what the capacity is, it's just spending time and being there because I think after all of this and last year was really difficult.
We lost a lot of friends and such. I think it really opens your eyes to the fact that you should spend time with the people that you love, and whatever capacity you can because you don't know how long you have with them, and it's made me appreciate my relationships even more, and I think that I go about nurturing my relationships even more with more care and compassion, and I feel that reciprocated from my support group, so I love everything that you said, so what about you? Oh wait, no, Sloane go ahead.
Sloane: Right. You brought up something about like our families being able to do other things, and over the break since I've been home, it's become so like blaringly clear. Like my brother will do something as simple as put on his shoes, but he like kneels on one knee and like does his shoe and then quickly flips to the other knee, and sometimes I get so jealous of people doing the most mundane things, and I think that adding that perspective of they could be doing something else, and they're doing this with me is something I wasn't like... I was thinking about it but not like directly, and I think I love that you pointed that out.
Sammy: Yeah, I think it's just so touching and it just that feels like love to me. Like that's what I feel loved the most, like when you're doing something with me and doesn't matter what it is, it's just because I know you want to spend time with me, so what about you Matthew?
Matthew: Yeah, honestly, I resonate with everything you guys say. I wish this was like a 4 hour podcast where we could just talk, but yeah I have a group of 8 gymnastics friends. I used to do gymnastics when I was, I think started from 6 years old to 15 and we were nationally competitive. We would go all over the place, but as you can probably guess I can't do gymnastics things anymore. Like we still hang out, we can go to like a gym and then just like mess around on a high bar or something like that. Obviously I can't do that...if you guys are curious about like what they do, you could just look up like college gymnastics. They crazy, but I look at them today, I'm just like we would go to open gyms or something like that, and obviously I can't do anything, but they're so welcoming.
They understand everything I've been through, and I think something that's super nice is having a really close friend or family member who you don't even have to say anything and they just understand, like you were saying, and I could watch them now and obviously I can never do the things that I used to do, let alone the things that they do now, but it's super fun to just hang out and be with them, and not have to worry about, oh, am I going to have to explain to them that, oh, I can't do this. I'm going to risk my arm being totally destroyed. Without even me even having a look or me even having a thought, they already know, okay, we can't do that. We can include him in this.
Whether that's just hanging out with anything, so I think just having really close friends who have been with me for a very long time before treatment, being with me close during treatment, and then obviously being really close with me after treatment. It's super nice to just not only get away but to I guess put everything, put my whole life into perspective.
Sammy: I love doing like these podcasts too, like learning about everyone's lore. Like right now I had no idea that you did gymnastics before. Like that's so cool, but it's just, you learn so much about like, this is our little like community. This is our friend group I feel like we're always learning new things about each other and it's so cool. Like I thank you guys for being so vulnerable and opening up, like it is really a lot like coming on here and being as open as we are, it's not easy. You have to kind of acknowledge that it's pretty difficult. Sometimes talking about all these topics, but the way that you guys do it with such grace and just this opening your hearts to us and then to the viewers. Like I'm so proud of you guys. I'm so happy to have you guys here so thank you.
I get what you mean, Matthew. Like I used to be a runner. Like I have a bunch of runner friends, but when I hang out with them, they're never like, "Hey guys, let's go do ten miles." No. They're like, "Let's go sit and watch a movie." And I'm like, "Hell yeah, that's right up my alley." So it feels so safe too. I think that's another big word, like when you're around people that love you and make those accommodations, like without even having to say it, like they just do, it feels so safe. Or like if I'm about to go up like a flight of stairs, I have friends who make sure that they walk behind me and they make sure they walk next to me.
Or they'll like grab my arm, and it's like those little things you feel safe and you feel so loved, and then I think we're all so grateful for like Matthew, who you were saying those friends who have been with us before, during, and after our process, like those are the friendships that I hold so close to my heart because their love never wavered, even though my ability to do certain things has changed significantly.
Mia: I think that's again a sign of someone who will really stick by you, and Sammy I completely agree. I feel like every time we do an episode, it's like we're adding multiple new like rich threads to our tapestry of like just osTEAo incredible people. It's just, we all have these stories outside of cancer. We're not just the cancer but at the same time it takes up so much of our lives, it's just crazy, and I have a couple of stories and only reason I'm adding more stories, and I'll let you guys go soon I promise, is because I want all of you who are on the call today, and all of you who are listening or who are watching this, to really know that you shouldn't settle for people who don't make you feel safe in any situation, whether you have cancer or not, it doesn't matter.
You want a support system where you feel safe, and obviously with cancer we need to highlight that, because a lot of us have disabilities that aren't visible from first glance, some of us do, some of us don't, but not all disabilities are visible, and so I think it's important, but my silly little stories, my cousin got married in 2022 and she was the captain of Cornell's Women's Basketball team 2 years in a row, and she is big athlete, and we went to Charleston for her bachelorette party and I don't do well with heat, and this was August, and it was me and 8 former D1 athletes, so again me 5'5'', 220, standing there. I was the shortest person by 4 inches. Sam who's my cousin was the second tallest, and so I think Ariana was the tallest at 6'3''.
It's me and all these super athletic women, and there was like a song on Sesame Street or something when I was growing up, and my mom and I reference it all the time. It's “one of these things is not like the others,” and so it was just so funny how much I stood out, and of course everyone, because we're going to bars and stuff. It's a bachelor party, and so everyone's like, "What?" And I'm like, "I have cancer, I never did sports." I was a Pilates, I was a Pilates girl, I did dance in high school, not because I loved it, but just because I hated BE, and wanted to hang out with my friends, and I thought it was fun doing the shows, so even though I was athletic, like I worked out a lot.
Like I was in very good shape, but it was mostly through like strength training and Pilates and dance and stuff like that. I was never like a runner or a track star or anything that other rappers say. I was literally just minding my business, walking around Seattle and, and my knee hurt like hell and then surprised you have cancer, but it's just so nice, because on that bachelorette trip, my cousin was like, "I like going to bed early." So literally whenever you want to leave the club, if you feel uncomfortable, I will say I'm tired, and we will go. I'm like, "This is your bachelorette party and you're still stepping up like this for me like that." Like it's that kind of level of care, and she was like, "No, I don't want to be at the club until midnight."
She's like, "I want to go to bed so we can make the booze cruise at noon tomorrow. You know what I mean?" She's like, "We can sit on that." And it's just so nice when you have people who care like that, and my last story is before I was diagnosed I had purchased non-refundable flights, hotel and wristbands for Coachella 2019, and I was diagnosed in September, 2018, and everything was bought in June of 2018, and I was bringing 2 of my sorority sisters, and I didn't ask my oncologist, I told him that I was going to Coachella in 2019, because I'd suck a lot of money in there and I'm going, and I asked him if I would be ready to, he said, "I don't know, but if your friends care enough that they're still willing to go with you, I think you'll be okay."
I ended up chafing so bad in between my legs and with really bad back pain because I hadn't walked more than half a mile. I walked 6 and a half miles on the first day, but Lindsay and Meg, my friends, they went above and beyond. I am serious. They didn't care about being as close to the stage as possible. They were fine hanging back so we could all sit on a nice little tarp together. They would help me get up if I needed help getting up from the ground. If we were in a crowded area, they would stand next to me and kind of like work as my bodyguards, almost the swooshy TSA machine, that's kind of the motion they were like dancing in to keep people away from me.
It was so sweet because I was fully bald and Lindsay was drawing on my eyebrows every morning, because she did theater and so it's just so nice having this camaraderie, and we may not be able to escape the Cancerverse, but the friends who come in and join us even for little bits and pieces, they're who get us through that, and the people who are on this call and just the people who are in our individual communities who make us feel safe. You can't escape but it makes it a hell of a lot better.
Sammy: It does. Yeah. Like you can't escape the Cancerverse, but the love that we feel from our support circle helps us embrace it.
Mia: Inescapable, you can't leave us.
Sammy: You can't leave us. Like my best friends, we're like, you're locked in. They like signed a contract in my mind. Like those are my people, you are going anywhere, and I feel the same about like this group too. Like it's just so beautiful, you make all these friends and I know, like some of us we don't talk as often sometimes. Like we all live so far and our lives go on, but the beauty of it is that we always check in with each other and whether we're talking or not, and you're far like the love is still there and we feel it, especially like when we do things like this. It's so beautiful.
Mia: We see you, we hear you, we've got you, so yeah, I just want to say, seriously thank you again to the Moore family. We appreciate it so much. I'm seriously going to start tearing up. For your generous support of our osTEAo Podcast and creating this incredible space for young adults experiencing cancer. Just to share our stories, relate with each other, and just heal together, and it's so beautiful and you all are what have made this the beautiful experience journey, whatever you want to call it, that it is, so thank you. Thanks for tuning into osTEAo the osteosarcoma podcast. Be sure to follow MIB agents on social media at the links in the description for all the intel and hot goss.
Thank you Sloane, Matthew for joining us today, and Sammy, as always, my beautiful, wonderful co-host. See you next episode. We're your hosts, Mia and Sammy, and...
All: That's the tea. Bye. Thank you.
Mia: Thank you guys so much.
