July 8, 2026 | 38 mins

Sabine Schwab shares her remarkable journey through brain cancer, from diagnosis to advocacy, highlighting the importance of resilience, self-care, and community support.

Tumor Type: Anaplastic Astrocytoma and glioblastoma (GBM)
Tumor Grade: Grade IV
Symptoms: memory loss, seizure, fatigue
Treatment: surgery, chemotherapy, radiation
Patient
Current Stage: Wait and Watch

Resources
Check out a list of the most common medical terms relating to the brain tumor experience: rewired-minds.com/terms
Connect with brain tumor organizations here: https://www.rewired-minds.com/braintumorresources

Connect with Rewired Minds
Website: rewired-minds.com
Facebook: https://www.facebook.com/RewiredMindsPod
Instagram: @rewiredmindspod
LinkedIn: https://www.linkedin.com/company/rewiredminds

Connect with Sabine Schwab
Facebook: https://www.facebook.com/share/16zH6zMy6B/?mibextid=wwXIfr
Instagram: @Sabine_NJ
LinkedIn: www.linkedin.com/in/dr-rer-pol-sabine-schwab-0232512b

Be a Guest
Interested in being a guest on a future episode? Visit rewired-minds.com/guest for more information and to submit your request.

Disclaimer
The stories shared here 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 professionals regarding your specific situation. Most importantly, take care of yourself as you listen and process.

Transcript
Bri (00:00)
I want to start this episode with deep gratitude. I recently looked at the trajectory of this podcast since it launched, and it has far exceeded what I thought it would be. I am humbled by how vulnerable you've been in sharing your stories, and I'm so grateful for your trust. I'm also so, so encouraged by the new connections being made between you and our guests. And I want to get your stories in the ears of those who need to hear them, which is why I'm asking for your help. Rating this podcast wherever you listen is a quick click for you, and it has a tremendous impact on getting in front of our community when they need connection, encouragement, and support. Would you be willing to give a five-star review to help us continue growing this community?

I really appreciate all the support you've given and can't wait to continue having incredible impact.

Also, have you been thinking about sharing 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/guest to share your interest. Your story matters. Truly. It really, really does. And I want to help you share it.

Bri (01:22)
I'm Bri Salsman, 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. Most importantly, take care of yourself as you listen and process.

Bri (01:46)
Today's guest is a dear friend of mine. Sabine Schwab is a 12 year survivor. She was originally diagnosed with an anaplastic astrocytoma in 2014, and it was recategorized as a glioblastoma in 2021. I know she's gonna share more about why that happened and all the details about it later in our conversation, but the largest impact has been cognitively and with the loss of her career.

I am beyond grateful that she's willing to share her experience with you and I appreciate you so much, Sabine. Welcome, friend.

Sabine Schwab (02:19)
It's nice to be here today. Thanks for having me on as one of your guests.

Bri (02:24)
We've been trying to get connected and both of us, our schedules are just so busy. So I'm glad that we've been able to find the time to connect. As typically goes in these conversations, let's jump back to before 2014, before all of this showed up in your life. What did life look like for you?

Sabine Schwab (02:46)
To summarize life was good. It was really more than good. Both my husband and I had moved to the US as you may hear from my accent. I'm not a native speaker. We are from Germany. We moved to the US a couple of years prior to my diagnosis. We landed in the same state only 20 miles away from each other coincidentally through both our jobs and we had just bought a house. I had graduated with a PhD in economics and in social sciences and it was just perfect. It was the life that we both had dreamed about. After we had bought the house, I became pregnant. That was also planned. So we were looking forward to being that little family in the suburbia of the New York metro area. And everything was good. Couldn't have been better.

I was working in the photonics and life science industry as an international project manager. I really loved my job, my career. I did lots of traveling for work and privately we always tried to add on little weekend trips to our travels and we actually competed about who got the better travel business trip and whatnot. And sometimes it turned out that we could align our travels together and be in the same area at the same time. So yeah, life was really, really good.

Bri (03:56)
Sounds like a building phase of life.

Sabine Schwab (04:00)
Absolutely, yes.

Bri (04:01)
So I have to know, who won the competition of better travel?

Sabine Schwab (04:07)
Well, my husband had way more travels than I did. So we have a map in our house, always had in any apartment we have lived in. And in the beginning we had different pins, different colors for his travels and my travels. And he had more than I had, but I always joked most of mine were financed by myself. Most of his were financed through his work. And he very often only saw the airports, whereas I, as I said earlier, tried to add on little days here and there to actually explore the area I was in.

Bri (04:43)
Quality over quantity is what I'm hearing.

Sabine Schwab (04:44)
Exactly.

Bri (04:44)
That's awesome. You’re getting established in your career, you're established in your home, you're pregnant, expecting your first child, life is moving along. And so what were those first signs or symptoms that you started noticing that made you pause and notice your body in a different way.

Sabine Schwab (05:07)
Well, pregnancy in general changed my life a lot because I was unfortunately one of the women who was sick throughout the entire pregnancy, not just the first trimester. I was hoping every week that it would go away, but it would not. No one at that time attributed my nausea and me being sick to a brain tumor. Although I did experience many other symptoms that overlap with brain tumors. I was all of a sudden very, very sensitive to lights. I was super forgetful, although there's pregnancy brain. And then later when you are a young mom, there's mommy brain. So my short-term memory was pretty much shot. I couldn't remember anything. In fact, once I almost forgot my daughter and her car seat while I was pulling into the parking lot at my workplace after she was born. And it was just horrible.

At that point still, I didn't think I had something going on in my brain. It was only when I experienced a grand mal seizure that we knew that something was off. And that was when our daughter was five months old.

Bri (06:10)
Wow, so all of this stuff is blending in with things that women experience in pregnancy already. It just sounds like your experience of this stuff was elevated maybe or exacerbated. Am I hearing that accurately?

Sabine Schwab (06:26)
I would agree with that. Although my doctors were not concerned all throughout my pregnancy, there was never someone who had suggested, hey, maybe we have to look a little bit further, do some more testing, something could be wrong cognitively with this woman. It was just a very severe case of having severe pregnancy symptoms.

And I went with that, I never questioned anyone about it. I just could feel that it was not right. I was not enjoying my pregnancy at all. And most of the symptoms stopped after my daughter was born, and then when she was five months old, I had a grand mal seizure. I never experienced any headaches or anything that would lead me to believe that something was wrong cognitively.

Bri (07:16)
I presume you go to the hospital with a seizure that significant.

Sabine Schwab (07:19)
Yes, I actually did. I did not regain consciousness after my seizure. I was very lucky that my husband was home. He actually had come home that night from a business trip and he found me in the bathroom on the floor seizing with our daughter sleeping in her crib. He was the one who called the paramedics and then I was rushed to the hospital and then the next day when I woke up, I was told by him that I had a mass in my brain. Clinicians all came in with the surgeon and telling me that I needed immediate brain surgery. I was kind of freaking out a little bit or a lot because I had not expected any of that.

Bri (07:58)
Sure, absolutely. How much do you remember this period of time, you know, being in the hospital? I know a lot of times memory of being in the hospital and surgery and post-surgery is through the memory of others rather than firsthand. How much do you remember of yours?

Sabine Schwab (08:12)
Yes it is.

I do not remember anything about having a seizure or how I got into the hospital. I remember running into the bathroom when I felt sick and that then I guess ended in me having a seizure in the bathroom and the next thing I remember is waking up in the hospital the next afternoon. I'm missing about 18 hours of all of that.

Bri (08:40)
Your five month old daughter in the midst of all of this, thankfully she was in her crib safe when the seizure happened, but that doesn't take the concern away from you and your husband as parents, I would imagine.

Sabine Schwab (08:34)
Exactly, yeah. I had to very quickly rely on my husband becoming the primary caretaker. I was still exclusively breastfeeding at the time I had my seizures. So he had to actually do the transition from breast milk to formula and bottle feeding all by himself. And that was not a big trusting issue for me.

I was grieving the time that I didn't have anymore with her and I was grieving the fact that everything was so quickly and I couldn't very slowly wean her off of that. There were many, many additional layers of difficulty and challenges that I had to go through as a very young mom with an infant at home that many other patients do not or haven't had to experience. Thankfully, they didn't have to go through that.

And then another fact that increased our challenge at the time, we do not have any other family member in this country and they're not just a state away, they are an ocean away. So we didn't have immediate help although I'm forever grateful to my in-laws who jumped on the next plane to then take care of our baby at home so that my husband could be with me in the hospital. So there was a big big help, but yeah, it was a big challenge specifically after they left and everyone else had taken off from work and spent some time with us.

But the PTO time of, even Germans, are done at some point, right? We get a lot but everyone had taken their vacations help us out and then it was just the two of us or the three of us or pretty much just him working a full-time job, being my full-time caretaker, and being a full-time dad. And thankfully he was able to work from home during that time but we decided we need additional help so we actually hired a living in nanny to take over that part of the caretaking.

Bri (10:51)
The other thing that's coming to mind as you're describing all of this is this is such a critical bonding time between you all and your new child. There are health and I would imagine even safety precautions that are now necessary.

Sabine Schwab (11:15)
Yeah, absolutely. And that was a big challenge again for me as a mom specifically. My husband was very nervous of me having another seizure. So he did not allow me or didn't like it when I was holding our daughter, when I was standing up, for example. He always wanted me to sit down, be safe on the couch. And of course, I understood where he was coming from. But it almost felt like I couldn't be the mother that I would have been had I not been diagnosed with a brain tumor.

So there was a huge impact on how I started or continued to being her mom. And then I also was very, very tired. I was mentally fatigued a lot and I took very many naps, very long naps. I feel in the first stages and months, including treatment, I slept almost up to 18 hours per day. So the bonding time that I had was cut short through that as well.

And then she was taken care by other people, which made me kind of jealous too. So yes, it was a very difficult time. To this day, I'm really grateful that my husband stepped up and never questioned his capabilities. He's a really, really great dad and has always been a great dad even before my diagnosis. Very hands on. Let's just say our daughter, when she would fall, she would cry for him and not for me, which is not the normal way of a mom and dad relationship to the children I feel. And yeah, it broke my heart a little bit every time she would do that. But today I'm very, very grateful for the great relationship that we both have with her. It was different than planned, but it worked out in the end.

Bri (12:56)
We all are able to, with hindsight, be gracious and appreciative. And at the same time, it doesn't take away from the challenge in the real moment when you're going through it. Parallel to all of this, you are going through your treatment plan. So what did that entail?

Sabine Schwab (13:16)
I was very lucky that my tumor was in a very favorable location for a gross total resection, which simply means that the surgeon was able to remove all visible cells. My tumor was located in my right frontal lobe, easily accessible. So after that initial surgery, I had the standard of care treatment for higher grade malignant gliomas, which is six weeks of concurrent chemo radiotherapy and then followed by twelve months of temozolomide. I think these days it's six months. Back then I did the full year of the oral chemotherapy drug that is called temozolomide.

Thankfully I was able to take that at home. You take that typically five days and then you have a break for twenty three days and that made it much easier to navigate the side effects that came along with it.

Bri (14:09)
And what were some of those side effects that you experienced?

Sabine Schwab (14:12)
Was mostly nausea for me and then the very, very heightened fatigue and I just slept a lot and I feel I missed many things by doing that. On the other side, I'm very convinced that by sleeping a lot, I protected my brain. I always see sleep as the cast that you put around your brain like you would put a cast around your arm. You wouldn't necessarily move your arm or play tennis or hammer a nail into the wall with a broken arm. You would try to keep it still, but we cannot keep our brain still because we talk, we think, we see, we process so many things. It keeps us alive, our organs and whatnot. So even though it's broken, we are still using it. So to me, sleep is the equivalent to a cast. Once I had understood that analogy, I just made sure that I got my naps and then to this day 12 years later I still try to schedule naps specifically on days that are mentally a little more challenging for me.

Bri (15:17)
This is really good to hear because these are the kinds of things that we don't hear about from doctors often and it it's not necessarily to to put the medical teams to shame or anything like that. Every single brain tumor patient and survivor is going to respond and react in a different way. For doctors to be able to confidently say you will likely experience A, B, C, D. That's just not the reality of the community that we're in, unfortunately. I think it's good to share the things that work for you because there's probably someone out there listening thinking, ‘oh I just am sleeping so much and I wish I wasn't sleeping.’ But the reality is that might be exactly what your body needs.

Sabine Schwab (15:57)
Yes, I mean we live in a society where people like to push themselves and perform and push your body and try to not wallow in your misery and whatnot and I do agree with that. But for brain tumor patients specifically I feel the brain is such a delicate organ and it does so much to keep us alive and we just have to protect it too.

It's like when you have so many windows open at a computer and you just close every window and then kind of reboot that rest that it takes to do all of that. That helps a lot to then have more energy mentally for the rest of the day.

Bri (16:35)
Yeah, I love all these analogies. They're bringing up so many visuals. I love a good analogy. So, okay you've done the standard of treatment. We're a year out or so from your original diagnosis. What does recovery look like for you?

Sabine Schwab (16:18)
Initially after my surgery, I didn't have a short term memory at all. We would have the same conversation over and over. In fact, I made multiple doctor's appointments with the same doctor because I forgot that I did that, but I wanted to be a help for my husband who had taken on all of those medical scheduling and whatnot.

So I did work with a occupational therapist on helping me with my executive functioning, which is the planning, organizing, the prioritizing, doing things in sequence. And she came into my house three times per week for six weeks. And by the time that we were done, she said, well, that's it. That's the end of the plan. And I looked at her and I said, no, we're not. I still feel very, very stupid. Her response was then, I'm sorry. This is the schedule that I have. These are the tasks that I have. There's nothing more I can do for you. But she also said you have to understand you come from a very high level. You are a person in your early 30s with a PhD. These are exercises I do with people who are in their mid 60s, mid 70s.

I just felt left alone and as I said, I was not happy with where I was so my husband and I sat down and he helped me design further exercises to train my brain because it is a muscle after all. Every day he took half an hour to sit with me and we would go over things like how to pack your bags because when we went on that first long weekend trip I was standing in front of my luggage crying. I knew I had to pack it but I didn't know how and yeah he just made up little tasks for me that I then had to complete and after two or three months of that I felt I was now at a point where I could say okay I'm back to somewhat normal. Not back to where I was but I was okay with where I was.

Bri (18:42)
What were the things that told you, I still know that I have more that I want to do regardless of whatever anyone else says.

Sabine Schwab (18:50)
So being a project manager and being in charge of other people's milestones and timelines and tapping them on their hands and reminding them has always been part of my life. I taught project management at my university and then I became a project manager for my work here. So not being do any of the above and crying when I cannot do a very basic task like packing my bags. That got me, that told me something is not right. And then on top of that, being German, being very organized, punctual, I like to plan, I like these things, they are just ingrained in me. When you then have that taken away, I was just not able to accept the new me that I was because of this diagnosis. I was very angry at brain tumor itself for taking that away from me. It was more difficult for me to cope that my career was over than the fact that I was now a cancer patient.

Bri (19:47)
And when you arrived at this place of my career is over as you described it, was there a period of seeking accommodations or adjustments along the way or was it a realization all at one time that this just simply is not possible for me anymore?

Sabine Schwab (19:32)
I've always had plans to return back to my career. I was still in touch with my former workplace all throughout my entire treatment and we had talked about what could be a possible reentry date and it was only when that date came closer and closer that I realized, no I can't, like I still need to rest, I need the flexibility in my day and I was nowhere near.

And still today I'm nowhere near to be able to perform the task that I had before. I have come to a point where I accepted this. It was very difficult to get there, by adding other things that now give my life a purpose, I feel I have accepted that the life I had planned for and worked hard for academically is not happening.

Bri (20:55)
What are some of those other things that you found?

Sabine Schwab (20:57)
I'm a big patient advocate as you know. When I was able to first advocate for myself, speaking up, going for a second opinion, not being afraid of any doctors, not questioning the treatment regimens, that put me into the patient advocate seat for myself at first and then later the more knowledge I gained, the more years passed, I was then help others that was one of the biggest accomplishments and things that drove me that my experience can have something good because I can help others and if I only have one person with sharing my story and even part of why I do this podcast is I really want to be there for others and share and my little tips here and there and help them to be better.

And then to even bigger picture, these days I do policy advocacy and research advocacy. So that is on a very higher level. I try to influence where research goes and always try to fight for more research funding for brain tumor patients. That is my passion these days and that has given my life a new purpose.

Bri (22:02)
I've never actually shared this with you, Sabine, but you are my inspiration and my personal aspiration. I hope to someday have the impact that you have. I don't know that I've met anyone in the brain tumor community who is not aware of who you are and the work that you do for the community, the impact that you've had. You are going to all of these conferences, speaking on panels, serving as a grant reviewer for a large number of grant proposals. As you mentioned, patient advocacy in many, many ways, and all of it with a singular goal in mind. It's people like you that give me confidence that we are going to find answers. They are not as far off as I once thought they were. So I am personally very appreciative of the example that you set because it lights a path for me in how to go about doing this work.

Sabine Schwab (23:03)
Thank you so much for saying this. I have the financial flexibility to do this and I have the ability to do it from a health perspective. I am well enough to advocate either on the Hill in DC or virtually, or like you said, go to these conferences and be the patient voice.

But I also feel it's kind of like my obligation. I'm still here. I'm one of the long-term survivors. Many people know that glioblastoma specifically has an overall survival of 15 months in the median. So I'm on the very, far right end of that curve. I shouldn't be here anymore, but I am, so I am giving my life the purpose and then doing this and being the voice and the advocate for all the others who no longer can or who are here but cannot because of more severe cognitive impairments or just because they are not interested in it.

As a former researcher, I've always liked to understand everything to the very core, always used to asking all these questions and challenging concepts. I just do what I have always done now in a different venue so to speak. It just again gives my life a new purpose and I also feel our experience is our expertise and we bring something to the table that many researchers have not experienced themselves so only we can speak to this and we can help by helping them with study design, feasibility studies. We can talk to patient burdens, accessibility to trials. We can help to make the enrollment very diverse. We can help design quality of life endpoints and not just endpoints like overall survival and all these other impacts. I'm just very thankful that I'm healthy and well enough to do that.

Bri (24:46)
Researchers and scientists are yearning for that input too. Not even nine months ago, you and I were on a panel together where researchers were presenting their proposals and wanting to get feedback from the patient perspective. Just seeing their gratitude and appreciation to understand how their research is landing for patients and is it understandable and is it getting at what patients really care about?

I think that there's this perception that the researchers and the scientists are just in a lab and closing themselves off and just doing their thing all day long and they don't have interactions with patients. But what I have found is quite the opposite, that they very much want that patient perspective and input because ultimately that's who they're doing the work for.

Sabine Schwab (25:35)
Yes, yeah, and thankfully an increasing number of grant funders also recognize the value of adding patient advocates to the scientific research team and they require at least letters of support from patients. So there is movement in that space and I'm very grateful for that because it will propel research into the right direction hopefully one day soon.

Bri (25:44)
Absolutely, absolutely. Well, and as we mentioned at the top of our conversation, at some point, your anaplastic astrocytoma was recategorized to a glioblastoma. How and why does that happen?

Sabine Schwab (26:12)
Usually every five years or so, the WHO and that stands for World Health Organization learns a lot more about brain tumors, their molecular profiling, genetics and whatnot. And based on that new knowledge, they reclassify tumor types.

So it happened that in 2021, based on the IDH status of higher grade glioma, they were reclassifying my anaplastic astrocytoma, wild type, which just means I don't have the IDH mutation to a glioblastoma, whereas glioblastoma patients who have that IDH status were reclassified as astrocytoma grade 4.

If you're listening and your doctors didn't do that or didn't talk to you about it, don't panic. Everything is fine because like my oncologist said, it just changed on paper. I know that lots of cancer centers, even the bigger ones, did not go into the data of the patients and make that change. Some did. Most actually did not.

You do not have to contact your doctors now asking about it. It won't change the type of treatment that you receive. For me, because I'm so immersed in the research, I knew about it, I read about it, I learned about it, and I questioned my oncologist about it, and he said, yeah, this is now just a new label. It doesn't change how your tumor behaves, which is not like a GBM. I wouldn't be here if my tumor was acting like a GBM.

There had been some changes back in 2016 when the WHO did some reclassifications around astrocytoma and oligodendrogliomas. Every now and then they do that and then it's in the news for a little bit and then someone like me picks it up and challenges their doctors about it. But again, nothing to worry about.

Bri (28:08)
So there's no real change in the tumor itself. It's just how we talk about it.

Sabine Schwab (28:14)
Exactly, yeah, just on paper.

Bri (27:36)
And you've mentioned, a few times today you are well enough. What does well enough look like for you?

Sabine Schwab (27:42)
Yeah, it's funny. I do not consider myself a survivor because I also have days to this day still over decade that I'm on this journey now that I very much do feel like a patient. I have days when I get home from conferences where I purposefully do not plan anything for a day or two and do not get out of bed. On those days, I sleep while my daughter is in school. I just use the time to pause and give my brain a break if that makes sense.

I always joke, I'm not a runner at all, my husband is the runner in our family, but I always joke if I wanted to run a marathon, I could potentially do that. Give me 10 math problems to solve in my brain one after another without a piece of paper, I would be so tired afterwards. So mentally fatigued days are very, very difficult for me to push through and that's why I always say I'm well enough.

Bri (29:17)
It sounds like you've kind of figured out the balance that allows you to do the things that fulfill you and give back and carry things forward without compromising your own personal health along the way.

Sabine Schwab (29:32)
Yes, absolutely. So it's very possible that we have an invite to a birthday dinner and on the way there my husband drives and I sleep and then on the way back I sleep in the passenger seat again just so that I can participate. And I always joke I know our very close friends' bedrooms or guest rooms very well because I'd rather go and then take a nap while I'm there than not going at all.

Bri (29:54)
How did you find the things that worked for you? I'm imagining there's a lot of experimentation that goes into this, lot of trial and error, things that you tried that was like I’ll ne ver do that again. You know, things like that.

Sabine Schwab (30:08)
Yeah, I feel when you're first diagnosed, there are so many things done to you. There's the cutting out of the tumor, then there's the frying of the brain with the radiation therapy, and then there's the poisoning of left with the chemotherapy.

But everything is done to you, so anything that puts you in the driver's seat and gives you somewhat of control in that situation is what I was latching onto. So at first, I looked at how can I eat healthy. I actually went on the ketogenic diet. That was way before it became a thing in the fitness industry. Because I had read that it's used in pediatric epilepsy as a form of seizure control. So I went on the ketogenic diet for almost a year and I only stopped because I was very restrictive. I also cut out dairy at the same time, which is not needed. Keto relies on heavy fats and and I cut that out as well, but I was craving fruit specifically when you cannot eat any fruit, apples, even berries, so that was a no-go for me, although I was able to get off my seizure medication with that.

And then I dove into other things. I looked into meditation because I couldn't fall asleep while I was on steroids. I looked into different breathing methods and I found YouTube videos that showed the 7-8-4 or whatever numbers it is for I think these days box breathing is a good thing. It is a very popular thing. Then my husband wanted to help me. He looked into juicing. So for many, many years every morning before he left for work, he would make a freshly pressed green juice for me. Very many things you come along the way as a cancer patient, some recommended by others, some by accidental findings or by realizing and recognizing what does good and what feels right and that's how you then eventually discover a regimen that helps for you. I always urge people, don't copy what others do specifically when it comes to supplements because they can do more harm than good as well if you don't work with a nutritionist.

Bri (32:18)
Yeah, absolutely. Sabine, how do you think about your future?

Sabine Schwab (32:20)
I am pretty positive about it, I would say. I'm not worried about dying tomorrow like I was when I was initially diagnosed. I planned my funeral. I'm a planner after all. I don't do that anymore. I do not schedule vacations anymore based on my MRI. If I want to go places, I book the flight. I don't wait until I have the go because I have quarterly MRIs still to this day and I will have them for the rest of my life just to catch a recurrence as early as possible for when it comes back and I always say when it comes back, not if it comes back.

Over the many years of having that pattern every three months to have your life questioned, I’m not anxious about it anymore. Sometimes I'm surprised by finding that MRI appointment on my calendar. I just planned like a normal person would and then every quarter I have it interrupted by a day or two when I have to go in to check for a recurrence.

Bri (33:16)
And of course I'd be remiss if I didn't ask how is your daughter today?

Sabine Schwab (33:20)
Oh she's great. She is 12 and a half years old on paper, wannabe 16. She is very healthy. She's very independent. We raised a very independent German. She's bilingual child. She's doing well academically. She's a big rock climber like I am. And she loves horses. She plays piano. She's looking forward to going away again by herself this summer.

I think throughout this experience to help to make her very independent and very much ahead of her age in terms of comparing her to her peers because mommy was there but mommy was sleeping and she had to learn to do things way earlier than she normally would have. But I wouldn't be surprised if she picked up a medical or nursing career one day.

Bri (34:07)
That's amazing. What does she know about your tumor today? When all of this started, she was five months old. So it's very different now.

Sabine Schwab (34:11)
We have always kept her in the loop about what's going on. When she was little and was old enough to understand that I have to close my eyes a bit every now and then. And mommy had a boo-boo on her brain and then that boo-boo word eventually morphed into mommy has cancer and she knows that I have lost lots of friends to this and that it's something that could potentially happen. But in our family death is a very normal topic and it sounds weird but we a very spiritual and religious family so we do talk about death and dying and end of life because we know that we will see each other in heaven one day.

And just a very quick story. I lost my mom to cancer when I was a teenager myself. When her great grandmother died seven years ago, we told our daughter about her great-grandmother not being there anymore when we would travel to Germany the next time. She said, oh that's great. And we were like, what? And then she said, now she can have playdates with your mommy in heaven.

So this is the type of child that we raised. She is a big believer as well and she knows everything about it but she's not concerned. She's just very aware and wary but okay with it. Like we all are because we have our faith.

Bri (35:33)
Yeah, yeah, beautiful, beautiful. How has all of this rewired your mind?

Sabine Schwab (35:37)
I was thinking about that question before this talk and I feel there's so many different answers I could give. As a patient, certainly the physical changes I feel have rewired me. I still suffer from short-term memory, executive functioning disorder. I'm still sensitive to light and sound and movement and all the things I was not before.

But maybe more impactful than the physical rewiring is the emotional rewiring that I went through. Those are a lot more positive. I feel I have a bigger appreciation for life these days than I had ever before. The cliche when they say people stop and smell the roses, I literally do that. Like I stop, I look at the beauty in nature.

My daughter has learned from me. We text each other when we see pretty sunsets or she calls me, mommy come outside the sun is so nice right now. Look at the sky.

I just feel my priorities have shifted. Before all of this my career was always on the forefront and I now enjoy volunteering and serving others and giving back and trying to make an impact and make the life easier for others that come after me.

Bri (36:47)
You definitely are doing that without a shadow of doubt. As I said, you are an inspiration and my aspiration. I am just so grateful to have you in my life. I'm also very appreciative for you to join the conversation today and share your story with listeners and if someone is listening and wants to connect to learn more about becoming a patient advocate themselves how can they get in touch with you?

Sabine Schwab (37:15)
Yes, please contact me. I'm an open book for anything that you need. On most social media platforms I go by sabine_nj. That is S-A-B-I-N-E underscore nj for New Jersey. Or you just type in my full name into Google. Sabine Schwab, S-A-B-I-N-E and then S-C-H-W-A-B and I'm sure that you will find me. There many articles about me and what I do and I'm connected with several organizations, so I have no doubt that you find the right Sabine Schwab.

Bri (37:46)
And just to make it even easier on everyone, I will also include links to everything you just mentioned in the show notes as well, but yes, you are easily findable. That is for sure. Well, thank you so much, Sabine. I appreciate it

Sabine Schwab (37:55)
Thank you as well and thanks again for allowing me to come on today.

Bri (38:10)
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.

Bri (38:42)
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 professionals regarding your specific situation.