"The Elite Runner of Survivors" (Deborah — Part 2)

If you're just joining us, I'm Dr. Randi Paynter, host of Changed By Cancer and your resident cancer epidemiologist. Before we go any further, if you haven't listened to part one of Deborah’s story yet, I strongly look to you to pause this recording, go back, and start there. Her trajectory through a lightning-fast clinical timeline, shifting from a clear brain MRI to nine active brain tumors in the span of a few months forms the mandatory landscape for what we are covering today.

In medical research we look extensively at protocols, clinical drug combinations, and macro data sets. But the actual infrastructure of survival is held together by human beings. Today, we pick up right where we left off, pivoting away from the sheer physics of laser surgeries into the interpersonal matrix of care. We look at how families establish boundaries in a crisis, how we navigate profound grief within a clinical space, and what happens when a patient is forced to walk completely off the edge of established medical data.

As always, a quick reminder: I am a cancer epidemiologist, but I am not your clinician. The data and experiences we discuss here are deeply personal and are meant for insight and advocacy, not as medical advice.

Let's return to Deborah’s story. Moving backwards into the immediate aftermath of her brain surgery as she balanced her role as patient with her role as parent.

You brought up your kids earlier, and I was hoping you would talk to us a bit about how old they were when this whole thing started, and really, what was it like being a parent to young kids while navigating all of this?

So at the time of my diagnosis, I had been married for almost nine years and we had two boys. One was six and one was three. And so I remember the day that I got the call, or maybe it was the day that I had gone to have my consult with the surgeon. Anyway, after school, I sat them down. I told them I had to talk to them about something. And here's where it really came in handy that we didn't have any close experience with cancer in our family. I was really, for our immediate family, like I was the first one, so they didn't have anything to sort of superimpose over that when they heard that word. And I said, you know, I have cancer. I described to them a little bit what cancer is. And I said, and this is what's going to happen. I'm going to have an operation, and they're going to take it out and make sure that there's no more. And that's where the adage of, ‘you answer the questions that they ask’ comes in handy, right? I, as a parent, I've always been really, really intentional about not foisting fears onto my kids that they don't come by on their own. Like, I remember the first time they, you know, one of them was like hearing a thunderstorm. I was like, oh, it's thunder. Let's go to the window. Let's check out what's happening. And they never were afraid of thunderstorms. And so the same thing with this. I was like, oh, you know. And so yeah, they saw when I came back from my surgery, I had a big wound, and I had stitches, and things like that. But, they didn't have this sense of impending doom because, frankly, and I don't know why this is, but I didn't either. I didn't really. It really sucked to be in this situation, but I, on some level, don't think that I ever really thought that this was going to kill me. And I don't know why that is. But I'm glad I've been right so far. So they just kind of had to learn to navigate a mom who is on steroids. Like when I was on steroids, I could be really short-tempered. And sometimes I couldn't really deal with having both of them in my room at the same time. You know, because they just they were energetic little kids. And so I had to, you know, one at a time. And the younger one especially developed this unbelievable sense of empathy. And he had this little doctor's kit, and he would come and check me out. That was very sweet.

What was the exact pathological staging that they assigned to you during this initial surgical window?

So I remember my surgeon, I asked him like about the stage and he's like, you're stage three microscopically. And I've looked it up since and I can't remember what exactly that is. So note to self, I need to look that up and remember what that means. But yeah, I guess it was stage three because there was like the melanoma in-transit, there wasn't lymph node involvement, but I didn't really get why it was stage three. But anyway, I mean they were definitely following me more closely because of the melanoma in transit. I also remember my surgeon saying something just like off the cuff about how my melanoma is one that he only sees like once every ten years. And I have never, I didn't ask him at the moment, and I've never figured out what he meant by that. I've looked at the pathology report and I'm like, I still don't, so I don't know. I don't know what he meant. If I went back to him today, I'm sure he wouldn't even remember. So yeah. Yeah. But, yeah, I guess, you know, I’m special. I'm an outlier. Yeah. Actually, this idea of being an outlier has come up for me again and again, right? Like, I talked about how the type of cancer that I got was not the type of cancer that women of my ethnic background get. And the way that I was treated for cancer is different than the way that… and it just kind of goes along with my outlier status that has been for my whole life. You know, I’ve always been super, super tall. I always had this crazy hair, like just it would be nice sometime to experience something in a way that everybody else does. So but in terms of my survival, I am beyond grateful to be an outlier. I just really wish that they would figure out what has worked so well for me so that it can start working this well for everybody.

I remember the Norse god named Tafinlar, so they had me on that as a single agent, but it's actually meant to be used in conjunction with another one called Mekinist. So the two of them, they work on different pathways. So Tafinlar and Mekinist. And I started out with Tafinlar. I was taking that exclusively for like three months until I had this really bad attack of uveitis. And then they were like, okay, so I guess we got to put you also on Mekinist. And the crazy thing about these combinations is that they, the side effects kind of tend to cancel each other out a little bit. And so I kept getting uveitis, but it was never as bad as that first time. So it touched off inflammation in my eyes that continued for years. But I've never had uveitis as bad as I did that first time with just Tafinlar. So that's an interesting thing about these drugs.

Time for an Epi Edit here — I want to look closely at the pharmacological mechanics of what Deborah just laid out. When a patient tests positive for a somatic V600 BRAF mutation, it means their cellular map has a broken switch that keeps shouting at the cancer cells to constantly multiply. The medication her team used — Tafinlar — is an oral kinase inhibitor designed specifically to lock that BRAF switch down. But biology is incredibly resourceful. When you block the BRAF protein alone, the cellular pathway often finds a molecular detour through an adjacent protein called MEK, causing the tumor to rapidly bypass the drug. To stop this, modern oncology uses a combination therapy, pairing the BRAF inhibitor with a MEK inhibitor like Mekinist. They intercept the cancer at two separate points along the exact same pathway. What's clinically fascinating is that while adding a second highly toxic drug sounds like it would compound a patient's side effects, it often does the exact opposite. Single-agent BRAF inhibitors can cause paradoxically activated skin lesions and explosive inflammatory events. Introducing the MEK inhibitor actually balances out the pathway signaling, mathematically lowering the incidence of those specific toxicities. As Deborah observed, her severe uveitis — a dangerous inflammation of the eye's middle layer — stabilized once the second agent was introduced. But balancing these pathway side effects requires a long-term clinical tightrope walk.

You stayed on that dual combination therapy preventatively for almost five full years. What led to the eventual decision to stop the drugs entirely?

I stayed on the targeted therapy preventively for – let's see, it was from April 2015 through February of 2020. I was on these drugs and, in 2019 – so I moved to Maryland in 2018, switched oncologists. And I kept experiencing eye issues, inflammation issues, wound up having cataract surgery. And then it just reached a point where my oncologist said, maybe first let's try and switch you to a different combination of drugs. So at the time, at least, there's probably more now. But at the time there were like three separate, drug combinations that serve the same function for brain metastases of melanoma. So I had been on Tafinlar and Mekinist the whole time, so they switched me to another pair of drugs. Eventually those caused the same eye side effects, and switched me to the third. Those caused the same side effects. So in February 2020, my oncologist said, all right, you need to stop taking medication because first of all, it's really endangering your vision, and we don't want that. And second of all, there has been no tumor activity. And so for a few years, I had been getting a blood test that was called ctDNA, which stands for circulating tumor DNA. And that checks for particles of tumor in your bloodstream. And they also call it a liquid biopsy. So I was getting those tests done, and every time it would come back negative. Then they switched vendors for the tests, and the new vendor needed a new tumor sample from me. But I don't have any more tumor samples to give. So I have stopped getting the ctDNA. And I went for five years without being on therapy until they decided, okay, I was I was getting scans every six months. And when I hit five years, which was just this past year, they said all right, so you can get scans annually now. So this May was the first time that I had gone an entire year without scans and cancer patients will tell you about ‘scanxiety.’ And I really managed to push it off for, for quite some time. But man, in the couple days before my scans, I was really just kind of losing it. Because once you have experienced the onset of brain tumors as just like a dull headache. And feeling really tired, and then one day suddenly waking up and you can't find words, you really, you start to worry about things like that because it is so subtle and so sneaky. When I had tumors in my lungs, I felt nothing, right? I remember the day before I had my lung biopsy, I rode my bike like three loops around Prospect Park. So I was like, you better show me what you're made of, lungs. I should have been in bed with a pint of ice cream, but now I was like, all right, we're going to do this, so let's do this.

So I wound up in NYU because my dermatologist in Brooklyn referred me to a specific surgeon there. And, you know, I think a lot of people are like, oh, don't you want to get a second opinion? And I was like, I could, but this seemed pretty straightforward. And the big name that everybody knows in New York is Memorial Sloan Kettering. And I was like, that's another stop or two on the subway. So if I'm going to be going here a lot, maybe I should check out NYU. And so we went in for a consult with the surgeon. So this particular surgeon does melanoma and breast cancer. And we're sitting in his office. He comes in, sits down in his desk, leans towards me and goes, you seem like a nice person. How did this happen? And we laughed so hard because obviously he was joking and I just knew that I was good in good hands. I just knew it, right? I, obviously I had looked up his record and any reviews and things, but yes, this was going to be a good match I felt. And it wasn't just him though. It was then the radiation oncologist was also fantastic. And then my medical oncologist and her nurse practitioners who, you know, before you have cancer, you don't really realize the role that a nurse practitioner can play in your care. And I really learned that, and I was just amazed. I mean, they're essentially your doctors too. They can do everything that a doctor can do. And in fact, the day that I had to go in when they found tumors in my lungs, my oncologist wasn't there. It was actually the nurse practitioner who talked me through everything, and I couldn't have felt more safe and more cared for. It really just made a difference – who was taking care of me. And these were some really exceptional people. So that led me to stay at NYU. And I stayed there through my treatment with gamma knife, through my brain tumors. And I only left when we moved out of the city. And it's really hard to leave a team that has cared for you – that has literally saved your life, right? There are serious feelings that you develop, serious attachments that you develop. And it's really hard to switch to another team.

I remember, you know, I love my medical oncologist in New York. I absolutely loved her. Absolutely loved her. This is a person who had wanted to fight cancer since she was in the third grade and learned about it in the Weekly Reader, right? And she had studied – her undergrad degrees where in biology and nursing. Like, what doctor studies nursing? So already setting her apart. And then she was a DO, not an MD. So again, very different kind of training. And she just was like an unbelievable doctor, just like in her approach to the patient and her humanity, her humor, everything about her. And also she was a total badass who earned her MBA from Columbia on the weekends while I was her patient, and then got to go and start a completely new program in a different hospital because she really had the skills. So, I can't say enough good things about her. But I remember her one time telling me how she felt that attitude was everything. And, I had a guy come in here once and he said, oh, I'm going to die. And we said, no, you're not. And he was gone in three weeks. And I'm like, I don't know. It made me a little uncomfortable to hear that from her. It sounded like some kind of tent revival thing or just some, like, weird, motivational speaker when I needed her to be my doctor. Luckily, that was the only time she ever said such a thing. But I just felt like… I have a sense of humor, and that's one of the weapons I am trying to use against cancer. But don't tell me that a positive attitude is everything because I know that it's not, you know? There are people who had such a positive attitude and they didn't make it. So I think it can be really dangerous when – especially when – medical professionals try and peddle that kind of thinking, maybe they're already saying it to somebody that they feel has pretty good odds. But all the same, that concerns me a little.

Beyond the physicians, you formed a very real human relationship with the auxiliary staff at NYU – specifically, your phlebotomist. Can you tell us a bit more about that bond?

At the NYU Cancer Center, I would walk in, there were greeters at a front desk, and they probably knew that you were coming because they probably could see that you had an appointment. But there was this one greeter, Quentin, and he just, we just developed this rapport, and he was really lovely. And, it was just something that made me look forward to going to my appointments. I was very focused throughout this whole thing on, like, where's the good part? Like, let's get to the good part. After every scan, I would go across the street from the hospital to the Greek Diner and get my spanakopita, and it was just like, I really loved having these, like, rituals and routines, and always thinking about where I was going to eat because that was really important. But yeah, arriving at the cancer center and having Quentin be there to greet me. Once in a while, they would have music in the lobby. Like, once there was a klezmer band. That was kind of fun. And another time I remember this because I think I wrote about it in my blog. There was a woman in the lobby with a keyboard. And as I was passing by, she was singing Qué Será, Será. And I'm like, is that really the vibe that we want in the cancer center? Like, whatever will be will be? No, no, we don't want that vibe.

And so then I would take the elevator up to the floor where my oncologist was. Her front desk staff were great. Sometimes the waits were interminable, but the further away I got from being in active treatment, the more accepting I was of having to wait a super long time because my reasoning was always they’re taking care of people who are sicker than me, you know? And if I got called in sooner, I probably thought, you know, they want a nice break. They want to see somebody who's doing well before they have to see somebody who's not doing as well as I am. So, you know, I had a lot of time sitting in waiting rooms. I also got to see with great delight that the pharmaceutical reps who would show up – I knew who they were because they were always dressed to the nines. And I got to see the way the front desk staff, would just absolutely make it plain that they were not a priority. And they were just, they just kind of had to very awkwardly, like, stand around waiting for a very long time, like sometimes even longer than I was waiting because they were not the priority. And yeah, I know that there's a lot of like back and forth and give and take between pharma and the medical profession. But I appreciated that. And I feel like that was probably my doctor setting the tone and making sure that her staff communicated that to these folks that they'll get to you when they get to you. Yeah.

So and then, the other people that I would see during my appointments, the medical assistant, Nelson, he was amazing. He had been a flight attendant for a charter airline that had somehow wound up making flights to, like, Somalia and stuff. So, like, just hearing all these people's stories was amazing. And then the phlebotomist. So the phlebotomist who worked with my oncologist, his name was Bakari, and he was from the Gambia. And certainly at the very beginning, like we got pretty close because when I was enrolled in the research study before I flunked because I got colitis, he would have to take like 27 vials of blood every time I came for a visit because this was part of the study. So, you know, we got to talking and I asked him to teach me some words in his language, and I decided I would try and teach him some Yiddish because I asked him – he said he was, a nursing student. So he was studying nursing and working and just unbelievably busy life and married with five kids. And so I decided I needed to teach him the word schlep, right? He needs to schlep all over. He had to schlep from where he lived in the Bronx to Manhattan to work and then schlep to Westchester, where his classes were… And I remember talking with him about Thanksgiving, and he said it was really his favorite holiday because it's about food and family and friends. And I stopped seeing him. And I, I didn't really – I couldn't get an answer, like a straight answer from anybody about what happened. And it was a while. And, you know, I really appreciated this person who had – just as much as my doctor, just as much as the nurses – been part of my care. And so I remembered his last name. And one day I decided to do a Google search and see what I could find. And I found an article from the Village Voice. That talked about his murder. He had been murdered by a mentally ill man in the elevator of his building one night when he realized – he was going to class, and he realized he had forgotten his phone. And he was going back to get his phone. This man got on the elevator with him and bludgeoned him to death. And it just, it just broke my heart. Because I have a particular, I have a particular empathy with immigrants. My family, we are immigrants. And I know the struggle that immigrants go through in this country, in New York City, just trying to get a foothold. And then to have it end in this way was really, really hard to take. It was so upsetting. And, so I finally had to confront my care team about it. And they, you know, obviously apologized for not saying anything, but it's not exactly the kind of thing that you're going to tell your cancer patients. And I get that. But, it was really – it was a blow. It was really one of the one of the worst things I remember happening. And it hadn't even happened to me. But I felt really close to this person, and he had taken care of me. And I really miss him.

It really highlights how much you look past the clinical role, to see the absolute person behind it. I know you've recently transitioned your career directly into this field, moving into the academic health library space. Can you talk to us a bit more about that pivot?

I'm an academic librarian, and I lived in New York City for 20 years. I moved there initially for a job, then I met my husband, we got married, and we had our first kid. When he turned one, I was really missing him. So I quit my job to stay home with him. Then the economy collapsed, and then we had another kid. And then I got cancer three times. So it was a little bit before I was able to get back to work. So in 2015, when the brain tumor showed up, I was working in a temporary job. When I got my brain tumors, I was like, I don't know what's going to happen here, so I'm not going to stay in this job. So I quit. But it took me a really long time to get back to full time work as a librarian. Eventually in 2022, I applied for a reference librarian job in a health sciences library at a university, and I got the job. So December of 2022, I started working there.

So we work with the Medical School, the Nursing School and the School of Public Health. And so I am in the classroom with medical students for their first three semesters of med school. Librarians are teaching them how to find evidence, how to do evidence-based practice, and how to give presentations based on that evidence. And it's really, especially now in the time of AI, just more important than ever that they have this solid grounding in, what evidence is, what is good evidence, what are predatory journals – like so many things that they need to know about. And so it's really exciting to be part of their training. I get to work with nurses, from people pursuing their MSN to people getting a doctorate, a DNP degree. And also work with students at all levels of public health, from undergrad to masters to doctoral. And we do a lot of consultations. So when people are working on a literature review, they will schedule time to meet with us. And it just brings me so much satisfaction to be able to do this work. It almost feels like, in a very small way, like I'm giving back in terms of all that I was able to benefit from in my cancer care. It's pretty important work for me. And sometimes I get to join systematic review teams. I have a couple of papers that I'm a coauthor on, because I help them with their initial search strategies. So that's been pretty exciting. And, yeah, I just, I love the work and I really feel called to it. And when opportunities arise, I will talk to my students about my experiences. I mean, I certainly have had many, many experiences with many different medical specialties. In addition to cancer, in 2020 I got a Crohn's diagnosis. So now that's like a whole area of medicine that I'm more familiar with. Because of my ocular side effects, I'm more familiar with what retina specialists do and what ocular immunologists do. And so, I bring up these things.

I'm always happy to share my experiences with my students. They don't always know what questions to ask, but I just want them to know that they can ask me if they're curious. One of the classes that I teach, the students have a case and there's a patient, and they have to practice telling the patient that they have cancer. And so, I will sometimes share my experience with that. And the fact is the first way that I found out I had cancer was over the phone. And my students were kind of horrified by that, but it's hard to know what is the best way to find out that you have cancer. Because if you have had a biopsy and then you get a call saying that you need to come in, well, they don't need to tell you. You know that you have cancer. So then you could spend the week or however long stressing about it. Or they could tell you over the phone. So I still remember when I got that phone call. It was the spring and I was alone in the apartment and I was looking out the window at a tree that was blooming. And I wasn't, I didn't know if I would get to see that same tree bloom the following year. That was pretty earth shattering.

Throughout our conversations, you've got me really thinking about cancer survivorship and what it actually means in practice versus research. What has your experience been like inside of that survivor label?

So my understanding of cancer survivorship is really everything after the point of active treatment, right? Where, I'm no longer being, no longer taking medication, I'm no longer being followed as closely, and, in the words of my friend Ingrid, who was like my first – I call her my cancer rabbi – so she's the multiple-time breast cancer survivor, and she was really the one who kind of guided me when I first was diagnosed. And she said, when you're a very special cancer person, and yeah, there's this sense, if you're lucky that you, you are this very special person who is getting all this attention from all of these professionals. And then when that fades into the background, as ideally it should, what is the framework there to make sure that you know people are still looking out for you? So I guess that that's part of it, and part of it is psychologically, how do you navigate being a survivor? There's this sort of adage that you don't get to find out if you survived cancer until something else kills you. So, I definitely feel that way about melanoma, which is a disease that – it's a malignancy that can sort of resurface after 30 years. And so, I think survivorship is pretty well established for breast cancer. Like, I think for breast cancer, at least for some types of breast cancer, you have these benchmarks, right? And you're one year, five years, ten years out – like it's very clear. And then you have something like melanoma where all of these drugs are relatively new, and my outcome on them is still being, I assume, tracked in some database somewhere. And essentially, though, I feel like – one of my nurse practitioners, once we were having a conversation and she called me an elite runner of survivors. And I'm like, oh, that's all very well and good, but that means I don't have really any data to fall back on, because every day that I wake up and I don't have a new tumor, I'm adding to the survivorship data. So you have to live with a certain amount of uncertainty. And I think where it comes in handy that I've never been good at being a planner is with something like this where, yeah, you really don't know from one day to the next what might happen. And so, to the best of your ability, you need to kind of get on with it. But it's hard. It's hard. You have to live with a sword over your head, essentially. And so maybe you learn how to make jokes about the sword. Maybe one day out of 20, you completely forget that the sword is there. But it's always there. And so I feel like what I would love is for there to be the benchmarks that exist for other cancers that have more established treatments and more established outcomes. But I guess what I have to be satisfied with at the moment is that I am helping to one day establish those.

I would like to just have more data. I would like to curl up at night with like a whole sheaf of data that doesn't exist yet, because I'm the one who's helping to create it. So yeah, it really comes back to the uncertainty of it all. My 24 hour period between being NED and then having like nine tumors in my brain – I probably have some PTSD surrounding that. And it's not by chance that after that happened, a friend of mine connected me with a therapist who specializes in PTSD but is also a cancer survivor and was the same age I was at the time. And so that was perfect because she absolutely had a 360 degree view of where I was coming from and what I was dealing with. So in that immediate aftermath, that was really, really helpful. And I think in terms of ongoing support, obviously we don't do great with mental health in this country, and it would be great if everybody had access to the kind of support that they need after a cancer diagnosis, all the way through becoming a survivor, if you're lucky enough to become a survivor. It's not like you don't need anyone to talk to anymore about this. It's not like it's settled, right? Especially with melanoma. It would be nice if there were ways to reach people in survivorship. Just like a multi-pronged approach to getting people the kind of support they need to feel less anxious, to feel less traumatized. But it's just a really – cancer's a really hard thing. To feel that your body has turned against you in this way, in this way that can be so subtle and so just nefarious, is really scary and is the stuff of anxiety for sure. So it's really about finding ways to release that as much as possible. And if you're also dealing with financial stress and like, debt from your treatment and things like that, then how on earth are you supposed to feel less anxious?

So when I was first diagnosed with cancer, I felt I was the first person in my family to get cancer. Like one of my mom's sisters had had breast cancer. But I think it must have been like in situ or something, and like it was just not a major thing. But then my mom's other sister, younger sister, was diagnosed with pancreatic cancer. And it was an incidental finding during a colonoscopy. So it was already stage four, but they found it early, which meant that there was like a lot more hope. And she actually lived for more than six years with a stage four pancreatic cancer diagnosis, which is just unheard of. Because usually pancreatic cancer, when it is found, it's just already too late. So it really spoke to the distance that, drug therapy has gone, but also detection techniques. And so we found out that actually one of my great aunts had died from pancreatic cancer. And one of them had died from melanoma. And so that was information that we hadn't had before. I was under the impression that nobody in my family had cancer. And so, yeah, it prompted genetic testing. But it's just kind of always lurking. But my aunt unfortunately passed away last November. And what I was really hoping to find or to figure out how to make happen was to find a researcher who could just analyze the crap out of our DNA and come to some conclusions about why we did so well on the therapy. Why my aunt did so well for such a long time. Why I continue to do well to the point that I'm not on drug therapy. Like when you are a survivor, you have a lot of guilt. It doesn't make sense, right? It doesn't make sense to feel guilty that you didn't die from cancer. But it feels terrible that you made it and others didn't.

So, I would still love to find a way to be useful in some way, to discoveries that will lead to drugs helping more people, right? Because that's really what it's all about. Immunotherapy is so incredible. If you haven't watched the documentary about James Allison, it's sort of like, Discoverer of Immunotherapy. Jim Allison “Breakthrough.”

I was really lucky to have the partner that I have. He's just, he completely stepped into the roles that he needed to when I needed him to, in terms of child care, in terms of cooking, in terms of like, really everything. And, yeah, I mean, everybody, everybody facing cancer should be so lucky. But I know not everybody is.

When we evaluate health metrics on a macro scale, we often treat long-term oncology survivorship as a finished equation, checking a permanent status box after ringing a bell. But Deborah's narrative shows us that the reality is far more complex. Surviving a highly aggressive cancer means walking completely past the edge of historical guidelines. It means being the raw biological outlier adding to databases that haven't been compiled yet. It means coping with hidden secondary side effects and structural ‘scanxiety,’ all while standing inside an active health university classroom, teaching the next generation of doctors how to appraise clinical data. The systems worked for Deborah because she possessed excellent insurance, premier urban oncology networks, and a deep baseline capability to parse peer-reviewed scientific journals. The goal of this media channel isn't to hold up the outliers so we can feel comfortable. It's to analyze the structural adjustments needed so these outcomes can become the baseline reality for everyone else.

A profound Thank You to my friend Deborah for her absolute honesty, her research, leadership, and her incredible sharp wit.

You can find comprehensive sources, links to her blog, and information on the Breakthrough documentary in our show Notes at ChangedByCancer.com.

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