Transcript
Speaker: I'm Brie Salzman, a brain tumor survivor and identity integration coach, and you're listening to Rewired Minds, a podcast that shares brain tumor stories that change us. Sometimes guests use medical terminology, so I've partnered with Northwestern Medicine Malnati Brain Tumor Institute to provide definitions of common terms. You can find the full list in the show notes.
Speaker: Most importantly, take care of yourself as you listen and process. In a matter of months, Matai Romanchik went from migraines that induced vomiting and blurry vision to loss of control in one of his arms. When he went to the ER, he learned that he had a grade three astrocytoma and found himself in surgery a few weeks later.
Speaker: After recovering from surgery, he completed seven weeks of radiation and is currently continuing treatment with chemotherapy. Through all of this, his life has been turned upside down and he now has meaning in his life.
Speaker: Thanks for being here, Mattai. Thank you for having me. So glad to have you. I really appreciate your willingness and interest. Who was Matai before all of this came around? I am a scientist and I've worked in multiple fields of science, such as like ah biomedical research and pharmaceutical development. And most recently, i was working as a program coordinator of a mental health rehab. So I was working about 60 70 hours a week for a couple years.
Speaker: And it was pretty exhausting. A lot goes on and being married and everything. So once I got the migraines, everything just started to change rapidly. I had to miss a lot of time from work and my relationship was on the struggles. So you already had, even before all of this, some sort of connection to the medical community on kind of the behind the scenes research side of things. Am i understanding that correctly?
Speaker: Yes, definitely. i've I've worked with a lot of patients with a lot of different conditions. Type 1 diabetes, celiac disease, when I did pharmaceutical development, I worked in a lot of cancer medication development. So I saw a lot of the background of it, but I never expected to get diagnosed with cancer myself at 35. Yeah. Oh my gosh. I bet. I think this comes as a surprise to most everyone. And working 60 hour weeks, that doesn't leave a lot of time for you if you're also accounting for sleep and and rest. But what what did you do when you weren't working? When I wasn't working, i pretty much just hung out with my husband.
Speaker: We'd go on little adventures, watch movies together, play video games. I don't like to always play games myself, but I really loved watching him play. But we just kept things low key. On days off, I didn't like to be around he other humans besides him and our animals. What animals do y'all have? We have a seven pound Shih Tzu poodle. He's super tiny and he's adorable. He's his name is Pickles. And we had a 200 pound St. Bernard who died last year from old age.
Speaker: Oh, I'm so sorry. Her name was Andy and she was super cuddly and fun. What a dichotomy between the two the two dogs that you had. i bet that was quite interesting to see them. Were they friendly with one another? They were, but mainly got pickles because I knew Andy was going to pass. And I've always had a dog and I was really terrified because Andy and I went through a lot together. We were homeless together a few times. we We went through a lot and she was like my best friend. i knew it was going to be really painful. So I prepared. And when a coworker said that her dog had puppies and they were small little seven pound dogs, which my husband preferred, I just, I was like, I'll take this opportunity because I know it's going to be necessary. and now he's my best little friend.
Speaker: Oh, I love that. Also for Andy, 16 years, i mean, that's half your life at that point. You know, so he kind of grew into adulthood with you almost. Yeah. I'm sorry to hear that he's he's no longer with you.
Speaker: I'm sure that was quite challenging. It sounds like you had some challenging experiences even before your diagnosis that kind of instilled some resilience and stick-to-itiveness. I know that's not a word, but... Yeah, totally. i worked a lot with trauma victims, and I was a psychiatric behavioral counselor after grad school, and that was amazing. i got to work with troubled youth, so I got to see a lot of the mental health side as well as growing up in a family that had mental health issues, and I had mental health issues for many years. With CPTSD, being diagnosed with autism and ADHD, they thought I had bipolar, but it turned out to be CPTSD, which was kind of a nice change.
Speaker: But I was on a lot of meds, and as weird as it sounds, my cancer diagnosis is what changed everything for me, and I'm no longer on ah mental health meds. Wow, that is a huge change. I don't know what the word is. I want to say incredible, incredible amazing, but also maybe a little scary in in some way, possibly. How would you describe that? I mean, scary for sure, because my dad died when I was 23, and he had his first heart attack at 40, then he died at 47. So I've always been terrified of death.
Speaker: even as a little kid. like I tried really hard to find religion in my life, ah which is probably why I chose the profession of anthropology. and But I've always wanted to be religious, but I could never do it. My brain wouldn't let me believe in something without enough evidence to back it up. So I use science and anthropology to understand the world around me and to create meaning. And I think for me, it was all pretty subjective until they told me that it was brain cancer, incurable brain cancer. So that was terrifying to hear. And it took a couple weeks, but it really just shifted everything that I thought I believed in And it's been such a journey that now I look back and it's changed my life for the better in so many ways. i mean, it's terrifying thinking about...
Speaker: The tumor's coming back, but I was lucky enough to have a really good prognosis with my tumor because was right on the top of my front bridle on the right side of my brain.
Speaker: And they were able to just cut a few parts and just lift it right out without a problem. So I got extremely lucky and I'm very thankful for that. Music
Speaker: Have you been wanting to share your story? Wherever you are in your journey and whatever your relationship is to the brain tumor community, I'm looking for more guests for future episodes. Check out rewired-minds.com backslash guest to share your interests.
Speaker: Your story really truly matters and i want to help you share it.
Speaker: And so it sounds like then surgery went fairly seamlessly. Yeah, it did. it It did. How was the decision made that you would then continue for radiation and then chemotherapy? Well, um I had surgery January 20th of 2025, and had eight to nine weeks of recovery And it was really weird because like for the first couple weeks, I would hear the fluid dripping in my brain from the from the cavity. And it was the weirdest sensation, but it was also kind of the coolest thing I ever got to experience. It was so funny and weird. But after i did...
Speaker: the eight to nine weeks of recovery. My mom and I went to New York City for a week so I could freeze sperm because my husband and I wanted to work on IVF. And then we did that and then I came back to central New York from that week in New York City and it was so expensive to start the IVF process. Thousands of dollars that we just luckily happened to have. And...
Speaker: We I got back home and then started radiation. it was every day for five days a week for seven weeks. And it wasn't crazy. It was weird. It was like 15 minutes in this machine with this cage on your face. But eventually after doing it every day for weeks, I just kind of got used to it. And I really liked my care team. They were super nice. Yeah, I've i've had that before, too. I have the the radiation mask. It is quite tight. But I had a similar experience that, you know, i I saw the same people each time that I went in. And every time that I went in, it got easier and easier and less stressful, I think. And I think that the the team had a lot to do with easing that worry and fear, for sure.
Speaker: Very much so. The team, your care team, matters so much, i think, when you have cancer. Because you see them so often. Yeah, absolutely. And so did you do radiation because the surgery was not able to resect all of it? Or that was always part of the plan? That was always part of the plan. They were able to get all the tumor and they were very successful with it. But they pretty much said the cleanup process and like the standard is to do the seven weeks of radiation and then a year of chemo.
Speaker: And I'm done with chemo this month. It's my last round. And I'm very excited because chemo was the hardest part of the entire process. What was difficult about it? I would say the stomach pains and no one prepares you. Like you you know that you have like ruined your digestive system from mouth to back end. And no one tells you that you can have diarrhea and constipation at the same time. Like that is mind boggling. I've never had to experience that kind of pain. And it wasn't like sharp pain. It was just uncomfortable. And then a couple days after chemo, it just is the worst vomiting and nausea and stomach pains and headaches. But they go away.
Speaker: which is one thing I always look forward to. Then the rest of the time is just dealing with regular daily pains of the stomach and sometimes mouth sores. But it's been pretty positive. Like i've I have met people at my cancer center and they have such drastically different stories that I really enjoy hearing. It really puts into perspective that I got off extremely lucky biologically that things have worked out the way it has for me.
Speaker: cause some of though Because what some of the people go through is just heartbreaking. It can be for sure. And that's what's so mind bending for me around all of this is that you could have the same diagnosis as someone else, the same treatment plan as someone else, but the impact and the side effects can be completely different, even though the tumor and treatment are identical.
Speaker: Yeah, exactly. It's scary. Yeah. What were some of the side effects that you experienced? Well, with radiation, I ended up losing all my hair the last two weeks. And that was weird because I usually like my hair. I usually have like a really thick faux hawk kind of thing going on. Sometimes I used to braid it, but then lost all my hair. And then also the day after radiation ended, May 1st, 2025, my husband and I split up and my stepfather came up from Tennessee to pick me up in central New York to move me down to live with my mom and my stepdad after my now ex-husband and I split up. But my ex-husband I were still really good friends. We talk all the time and he's still there for me.
Speaker: We just decided not to continue our relationship after 10 years. That's a significant change at a really pivotal time in your life. How did you manage both of those at the same time? I would say music.
Speaker: I would listen to music constantly, like all day, every day and all night. And i liked I like to cry because it always makes you feel better. Like when your stomach hurts, give yourself a good cry and all the hormones come in and you're just feeling a little better. But I would talk to my mom a lot about everything. She's always kind of been my best friend. So living with her made everything so much easier because I didn't have to worry about rent or I didn't have the stresses of that kind of adult life anymore. So I just got to sit back, learn what it is to be single and to be alone in that way, and then find ways to find comfort in myself instead of having to have it from someone else. Because a big part of my mental health issues prior to cancer was like attachment. So I would need someone to love me in order to feel like I had any value. And since splitting from my ex-husband, i that's no longer an issue for me. i have found like a home within myself that I don't need someone to save me because i can do that myself. And my mom helped me get there. I love a home within yourself. What do you have within yourself that makes it home?
Speaker: I think I am able to have internal conflict. Some days everything seems so loud and angsty and, you know, never going to find someone to love again. It's kind of scary when I've had a lot of great relationships. I'm 37 now and I've been married twice and It's been a journey. I've had great relationships and horrible, traumatic relationships. But I think through it all, I've realized now that I'm most likely facing towards more of the end decline of my life, having brain cancer at my age.
Speaker: I've more than accepted that I may never have another intimate relationship again, and I'm honestly okay with that. I have learned to really enjoy myself. So when I...
Speaker: cry at some part in a movie, I no longer feel the need to have to hide it. Like I'll just let myself feel whatever I'm feeling and then be able to prioritize what I need as opposed to what someone else needs.
Speaker: So I'm able to put myself ahead of others, which I didn't always used to do. What helped you shift in this direction? One of my dreams has always been to be a dad, but being queer has made that extremely impossible because my first ex-husband and I were trying to adopt when we split. But my most recent husband, we were doing really well. We rarely ever fought. we were just on track, wanting to be parents. But I think cancer changed a lot, but it also kind of made...
Speaker: it hit home that I may never be able to be a dad like I've always wanted. And we've tried so many different ways for years. We were licensed foster parents during COVID, but never got a kid. So then we, during COVID, we ended up moving back to New York because we lost our jobs. And...
Speaker: it just It just got complicated. So I realized that I wasn't able to become a dad. And then losing all of that and my relationship with someone who was my best friend, and I slept in bed next to him for 10 years, everything feels like it went away. i prided myself on the careers I've had.
Speaker: And the education I've had. And i always wanted to do the best I can. And then to have everything taken away from my job, from my love life, from my family building. Everything seemed to go away. My independence. And just, once you lose everything, you have this whole new perspective to find what's next. And I think that journey to finding what's next for me has been life-changing. many people would crumble under all of that, my words, not yours, but all of that loss. But it sounds like you don't view it as a loss, that maybe you've experienced it it in a different way. No, i think I think because I've experienced so much worse than a breakup, even with someone I thought I would spend the rest of my life with, i was sexually assaulted as a kid and a teenager and as an adult. So there's been a lot that I've been through
Speaker: that was really traumatic and difficult to get through. A lot of people in my life have died. One of my clients, when I was a psychiatric behavioral counselor working with troubled youth, she attempted to hang herself with a scarf. Another girl I worked with, she ended up getting out of placement and was murdered two days later by her ex-pimp. So I faced so much loss and like turmoil in life. I think it's hard to really phase me. i don't think anything is the end until death. And even with death, I'm comfortable with it.
Speaker: When it happens, we're biological creatures. It's inevitable. And I think for me, the hardest part is finding meaning in life without being able to accept religion because it just didn't work for me. You have faced quite a bit. And yet you've said multiple times in our conversation that the cancer diagnosis is the thing that really kind of tipped the scales for you, if you will, that really changed everything for you. So what was it about this diagnosis that made it so different than the other adversities that you've faced? I think the finality of cancer alone, it's like something you can't really escape. You have to learn to accept that part of you. Like my tumors may come back and I had to accept that and prepare for it realistically. But also I've worked really hard at processing things.
Speaker: a lot of trauma that I didn't think I processed decades ago. And i think cancer really killed my ego and it shifted something. Like I was telling my ex-husband while we were still together and after that everything has changed. Like things that I once cared about are just so trivial now. Like I don't find purpose in not being honest with myself or others. Like if I don't want to hang out with someone, I don't feel that social pressure to say, Yeah, let's hang out, but you really don't want to. I'm just like, no, I'm good. Thanks, though. And it's just having ownership of your life and kind of how you process your traumas and issues. Last summer, I did an LGBTQ plus cancer support group. And one of the exercises that people were talking about was to start writing and free write about what you believe, who you are, what makes you you, your favorite memories, stuff like that.
Speaker: And for me, I was writing every day, a couple times a day on my phone, on my computer, and I mostly would talk about things I believed in, like ethics and science and people and humanity. And it just really made me focus about like what I really cared about. And I noticed that I wrote a lot about ethics and humanity and what it means to find meaning in the world.
Speaker: I think cancer has opened up my ability to think outside of my individual selfishness and my ego. I've been very thankful for that. This word meaning has come up several times. What is this newfound meaning that you've uncovered? Finding meaning has come to a few different frameworks for me. Like some of them would be I'm super passionate about anthropology because that's understanding human beliefs, cultures, identities that are shaped through context, evolution,
Speaker: and obviously meaning-making, and not ah not necessarily objective truth. But then i' would use my ethical system as like secular humanism, which is a moral system centered on human well-being, empathy, and like reducing suffering without relying on divine authority. And that was always important for me.
Speaker: I found out through that support group, all my free writings really made these things clear to me that what I cared about was ethics and justice. And it's very difficult to do that without having to use like religious frameworks.
Speaker: to apply an ethical or moral system. but I think that has been something that has really impacted how I view the world. And I think one thing that's given me purpose since having cancer and being out of work for a year and a half now has been advocacy and showing up to things that matter.
Speaker: And I think I've had the free time for once to be able to read and kind of learn more about what it means to be human. It sounds like this insatiable curiosity and inquisitiveness has always been part of your life. And really, you turned it into your career in a certain sense. And then your cancer diagnosis came along. And it's almost like that gave you an opportunity to apply this professional skill set that you have to your personal life.
Speaker: Am I understanding that? Yes, exactly. Completely. Yeah, exactly. Interesting. Through this kind of application to your personal life and through your journey with with your diagnosis and treatment, what have you learned about yourself? I've learned that I really get passionate about justice. When I see something that I find unjust, then it's so difficult to like let that go, which can be overwhelming. You get so so inundated with horrible things. But I spend a lot of time trying to like stay engaged in the world, but not letting it make me feel defeated. So I i really don't feel defeated by the bad things happening anymore. it used to really bother me. Environmental injustice or animal rights issues, i used to get really upset about, and I could be like really mean to people. and nowadays i
Speaker: don't do that. I'm still really passionate about things I care about, but I just, I don't let it affect me in the ways that it used to. The approach has shifted, it sounds. Oh, completely. It's softened maybe a little bit.
Speaker: We've covered a lot of territory in our conversation already. What do you wish that others understood better specifically about your diagnosis treatment experience and this transformation that you have experienced? I would say being able to come to terms with your diagnosis is really hard because you feel like your body's betraying you.
Speaker: I've had people who would talk to me about what if my previous job's working in cancer medication development, which I would have to be in full PPE and use special equipment to work because it was ah radiation. So like, what if one of my past jobs gave me a higher chance of getting a brain tumor? But I honestly think it doesn't matter. What matters is I add a tumor And it grew.
Speaker: and it could have been there for a long time. It could have been quick. I think grounding myself in the reality of my situation has had such a profound effect. And I really hope other people um can come to terms with what their body is going through. Because you really can't control cancer. i think the science behind it is what gave me comfort. For me, it really helped me put things into perspective that it's out of our control. And as humans, we want to have everything in our control. And you just can't.
Speaker: Like if your body isn't responding the way that it should, it's super sad and terrible. But I think realizing that We can only do so much and it's up to our biology and ourselves to do the the hard fighting. So I like to try and keep everything in a scientific perspective because for me, it brings comfort in just understanding the reality life.
Speaker: biology especially. it's ah It's a delicate balance between you know the reality of of what you're facing and and a hope for solutions in the future, I suppose. What do you see in your future? Well, I have a few different ideas. I do know that I have said to people I care about most, like my ex-husband and my mom and my stepdad and my sister, that if I do go terminal, if and when that day comes, then I would rather do the medically assisted suicide.
Speaker: So I've already planned that and have a natural burial and donate organs and stuff. So I think getting that out of the way and accepting that final path when it comes, because my type of cancer has a 65% chance of regrowth within within the first five years. So you know there's a good likelihood that my tumor or more tumors or worse can come back. So I think I've accepted that that could happen. And for now, i have social security disability, which has been nice. I've had a hard time with Medicaid. They keep trying to cut me off. Right now, I had to do an appeal.
Speaker: because they say I make too much on disability to keep Medicaid. And my ex-husband and I are getting divorced this summer, so I'm gonna lose his insurance and I'm losing Medicaid. So it's this whole big, you don't know what's gonna happen, and I don't necessarily know if I can easily get a job in my field again. But also I still have tremors and I still have a lot of brain fog issues and I can forget things all the time. And not just like you got to the kitchen, what was I coming for? It's like, I'll be in the kitchen and be like, wait, why am I here? Like, what's going on? So it can be difficult. And also I really don't have a whole lot of energy. Like I'll do five, five hours of something throughout the day and then be completely wiped out. A lot of it could be from chemo, but I'm really just hoping that I'll have a few more years
Speaker: to experience things and hang out with my nieces and nephews who I see a lot, spend time with family and friends, and be able to watch all the new awesome movies coming out And if I end up passing in a year or two, I will know that I lived a great life full of interesting, weird things. And I was a fun, weird person. And I think I enjoy that. You mentioned, you know, accepting whatever comes. How are you able to find that acceptance? Because I think that's something that a lot of people struggle with.
Speaker: I completely agree. And I know like it's difficult for my mom to hear me talking about it. So I understand that it's not an everyday thing that most people are comfortable talking about. But I've always been very macabre. I've always been interested in death. like and I did my dissertation on Haitian-American voodoo death rituals. And then I did some forensic anthropology work. And it was...
Speaker: fascinating and I've always been interested in death and how people celebrate it but also how like we look at it I've always been super terrified of dying but since having cancer it really put the fact that I am mortal I'm not immortal like I always assumed I was and I think realizing that my body has limits has been very important especially if my body is going to grow another tumor that's out of my control all I can hope is medicine helps prolong my life but if it doesn't I know that I will have died have so much love, and I've been through so many bad and amazing things, but I know I'll have my ex-husband there and my closest friends and my sister and my mom. I think that's what really matters, is I have prioritized the people and like the fact that I have experienced so much love in life, and I think that's...
Speaker: What it comes down to is as humans, we want to experience whatever we can, especially loved. And it is kind of baffling to me that I finally feel comfort in that part of life after getting cancer, an incurable cancer diagnosis. I didn't expect it. It's very weird, but I do have to say it is one of the best things that's happened to me and it's made me a better person. Wow.
Speaker: Thanks so much for sharing the tie. how How has all of this rewired your mind? It's rewired it to be more compassionate towards others and especially more compassionate to myself. Like I used to have an eating disorder in my 20s. I hated how I looked. I hated being pudgy and then skinny and then pudgy. And then I got fat during COVID with my ex-husband and it was great.
Speaker: So all my fat, all my pudginess now, it sucks. But at the same time, i don't hate myself like I used to. Like I don't worry every day about how I look in a mirror or how other people see me. And now I just, those things don't matter. What I'm wearing for clothes, it doesn't matter. Like I shopped at Goodwill today and I used to never want to shop at places like that. But nowadays i love it because i find so much weird stuff and it's affordable and being kind of poor, affordable is nice these days. Yeah.
Speaker: I think definitely the rewiring of my brain for me has killed my ego. And I think it's made me appreciate the love I've had in my life over anything. I think the through line that I'm hearing in our entire conversation that continues to show up in different ways is that this diagnosis and this journey that you've been on the last couple of years has made clear for you what is most important and prioritized your core values in a way, not that they weren't there before, but maybe there's more clarity and more commitment possibly. i don't know if that's that feels like the right word for it. It does.
Speaker: It really does. It feels like I've made a commitment to myself to love myself for who I am and not who I wish I could be. I think a lot of that is reinforcing that I now trust myself to be there for myself without feeling like someone else has to save me or I need someone else to make myself feel whole. But it's just me and my big hole in my brain now. And it's kind of great. I love that. What what a great way to wrap. That's amazing. Mattai, if listeners want to connect with you and learn more about your journey and maybe share about theirs, where can they find you? I'm on Facebook and Instagram and TikTok sometimes. Mostly on Facebook because I really, i follow a lot of science blogs and they're so fun on there. But my name is Tyromanchic and I also go by Hexcellent Hag, which was a fun swamp witch name my friend at one of the labs I worked at came up with. But yeah, I'm Tyromanchic. I'm pretty much one of the only Tyromanchics there is. So it's pretty easy to find me. Awesome. I will include links to your profiles in the show notes as well to make it easy for folks to find you. Thank you so much, Matai, for joining me for this conversation and just for for sharing all the different aspects of of your journey, especially how a diagnosis and treatment isn't
Speaker: just the medical side of things. There is a ripple effect. There is a larger impact on every aspect of your life. And for you, it really sounds to have been truly transformational in many, many ways. I appreciate you sharing. Yeah, definitely. I'm glad to.
Speaker: Thank you for being part of the Rewired Minds community. Full show notes, resources, and a transcript for today's conversation can be found at rewired-minds.com. If you or someone you know has a brain tumor story to share, I'd love to hear from you. Visit rewired-minds.com to learn more about collaborating on a future episode. This podcast is a one-woman labor of love. It's a true honor to bring it to your ears and facilitate connection among the brain tumor community. If this episode resonated with you, please rate, review, and share with someone who might need to hear it.
Speaker: The stories shared in this podcast are personal accounts from the brain tumor community for informational and awareness purposes only and are not intended as medical advice. Always consult with qualified healthcare care professionals regarding your specific situation.
