A special episode from Before We Go

0:00This is TED Health, a podcast from the TED Audio Collective. I'm your host, Dr. Shoshana Ungerleiter. Today, we're going to do something a little different. I'm going to share the second episode of a podcast called Before We Go. Before We Go is the story of my father's cancer, the surprising diagnosis that threatened my own health, and the unexpected paths I took to find meaning and purpose in it all. We shared episode one with you back in mid-October, but it's been a while. So I'm going to remind you of some of the important things that happened in that episode. It started in the summer of 2022 with a phone call.

0:46It was on a weekend and I often talk to my dad, certainly on the weekend. So when I got the phone call from him, I thought we would just be catching up about my recent trip. But I could tell that there was something different about his voice. He sounded just kind of worried. He said, Shosh, there's a mass in my pancreas. You told me that you were scared because, given everything that had happened in your family, that was a real possibility. That's my husband, Ed Ayton. I think I was overwhelmed and felt like there was going to be a really bad road ahead and that I knew enough about pancreatic cancer to know that this was a one-way street.

1:40It took a few weeks, but eventually my father's diagnosis was confirmed. Stage 4 pancreatic cancer, meaning that the cancer was inoperable and would most likely kill him.

1:56The morning after the diagnosis was confirmed, my dad and I sat in his primary care doctor's office. And we were given an option that I wasn't expecting. His physician told him that he'd qualify under California's law, which had legalized medical aid in dying. I don't always bring it up right at the beginning. And often you've got to see how the patients are feeling before you do that. But I would share from experience that patients who are like your father, they're very engaged. They're very well read. He's a brilliant thinker. They're male. They're used to being in charge. They're independent.

2:38They tend to be the ones that want to talk about that early because that's the way they've lived. They're the CEO. This option is important to them. They've heard of it. knowing your dad for a long time as a friend and knowing his capacity made it easier to talk about that from the start.

2:59But before my family had the chance to even consider it, a specialist suggested something that would end up changing the path of my dad's cancer journey. Something that would impact me and my entire family. I called my husband to tell him the news right away. It was so confusing because you said, I have good news that's also bad news, but maybe good news. I think it's bad news for me, but good news for my dad, but maybe it's good news for me. And I don't, and I'm like, I can't track this. Can you just let me know?

3:47And with that, you know everything you need to know to listen to episode two, which is the episode you're going to hear today. I hope you'll like it. And if you do, please find Before We Go on your favorite podcast app. All eight episodes are available now, so you can binge them all without having to wait. I'd be so grateful if you tell your friends about the show. That's actually the best way to make sure this podcast reaches the people who need to hear it. But before we dive in, a quick break to hear from our sponsors. Shoshana? Shoshana? Good morning. Is it on? Yeah, remember the audio is going, so...

4:31Hi, pumpkin. Say hi, Daddy. I'm less than a year old in this video, and the man holding the camera is my dad. There's Daddy. Say, hello, Dad. What's that weird black thing you have in here? Hi, Sushi. Hi, Sushi. Sushi, we're rolling it. A few years later, my sister came along. Shauna, have you been taking care of your baby sister? Yep. What did you do with her this morning?

5:03Uh-huh. My dad filmed everything, and I mean everything. You are my sunshine, my only sunshine.

5:26So I don't know if you know this, but I'm having all the videotapes from our childhood digitized. No, they should live on VHS forever to never be seen again. That's my younger bossier sister, Arielle. I don't necessarily prefer the word bossy, but I think maybe assertive was the word you were looking for. Ariel and I hadn't seen these tapes for decades, but we had a pretty good idea of what we'd find. Say, say, who do we appreciate? Lakers! Lakers! Yay, Lakers! All right! Two kids who don't really look a lot alike. A lot of performances of like me on stage or at gymnastics meets or you playing basketball or winning some academic competition.

6:14The underliner cousins doing five foot two. Maybe some nudes of our wild hippie parents who would have naked hot tub parties with the rabbi. I dug up these old family videos because I wanted to find memories of my father. But all I found were glimpses of the man behind the camera, a director of sorts, sometimes calling out cues to Ariel and me. John, how about a moonwalk?

6:48He was an interesting, hard-to-pin-down character because I think he had a lot of different identities. You know, on the one hand, he was very serious at times. And I always was like a little bit afraid of him. He was also very fun loving and free spirited and athletic. He spent a lot of time stretching for whatever. I mean, I always remember him sitting on the living room floor in that like sunken living room on that cushy wool carpet, like doing his stretches in his running shorts. And I could never figure out if he was actually going to run or had just come back from running or was going to even do anything athletic.

7:27My parents were both Jewish, but they were also total hippies who wanted to escape everything that they'd grown up around. So in the 1970s, they moved to the country, outside of Eugene, Oregon. Arielle and I were always the only Jewish kids in our schools. It was very isolating, and I don't think I really knew until I was an adult or now raising my kids with other Jewish kids within their school, what it means to have that sense of community. Sometimes other kids would ask us really bizarre questions. So what does that mean? Because my dad said that if you were Jewish, you would have horns, like the devil coming out of your head.

8:12I remember a kid asking me that on the school bus once and just being so confused. There were only a small handful of Jewish families in the area. There were probably three times as many Jewish kids in my school as yours, but that meant there were two in your school and six in all of mine. That's Melissa Scheinfeld. We've been friends for as long as either of us can remember. Our moms met first. My mom was pregnant with me, and your mom was pregnant with Arielle, and they were both at the synagogue, like, extremely pregnant. And so we spent a lot of time together. They formed this chosen family in Eugene, Oregon, and we really grew up together through all of the Jewish holidays and traditions and so many family things.

8:58And so I asked Melissa for her memories of my dad. My favoritest, fondest memory. Your dad used to happily drive the three of us, you, your sister, and me, to Mount Batchelor to go downhill skiing. which now as a parent I understand was like kind of a big deal that one parent just takes all the kids.

9:26We'd all pile into my dad's Land Cruiser. And then he always, most importantly, had a round hairbrush in the car which he would point towards each of us when Michael Jackson's Heal the World would come on probably over and over again. And we all sang at the top of your lungs with your dad to Michael Jackson's songs.

9:52My memory of it is being so happy and having such a great time. Just deep love from your dad on that.

10:06But then when I was 14, something happened that altered our lives. Did dad change after Grandma Joy died? And in what ways? I think he did change a lot, going from being kind of this upbeat, positive, free-flowing guy to things being, like, much more serious. I think he carried a lot more anger.

10:38and the story of how our grandma joy died is important to understanding how my father reacted to his cancer diagnosis and all the things that happened next

10:53i'm dr shoshana ungerleiter and this is before we go episode two grandma joy

11:09We were sitting in the living room and it was early evening and my dad, it just seemed like something was off with him. And he said, you know, we need to sit down and have a family meeting. My dad was a psychologist, so we actually had a fair amount of family meetings. So I didn't think anything of this one. I remember him just really slowly and sort of carefully sharing with us that Grandma Joy was sick, that she had cancer. Grandma Joy had been diagnosed with pancreatic cancer, the same cancer that my dad would later develop. I was 13. I don't think I really had a sense of what that meant. This was the first person in my life that I knew really well, that I was close to, that was ill.

12:07Our Grandma Joy lived in New York and in Israel. She was a remarkable woman. She studied archaeology and was an author. She'd been the curator and then the director of the Jewish Museum in Manhattan. And even though we lived 3 ,000 miles away from her closer home, we still got to see her quite a bit. We would go to Martha's Vineyard in the summertime and typically see her. Sitting there on these warm summer nights in this little screened-in porch that she had, she would drink a really stiff cocktail and classical music would be playing in the background, which I always thought was so weird. And she would always come to Oregon for Passover with these like flowerless chocolate cakes wrapped in tinfoil in her carry-on.

12:55She'd come for a week. So like, why don't we bake that in Oregon? In retrospect, it makes no sense to fly with baked goods in your carry on. But that was her shtick. I remember her laugh. She had a great laugh. And she had like a fabulous sense of style. But she didn't dress like posh, like there was no Chanel involved. She was so healthy. She swam every day. She played tennis all the time. She traveled the world. We would get photos of her and Yasser Arafat at some summit, you know, and I'd be like, who's that guy? He looks interesting. At 13, I remember feeling shocked that such a vibrant, healthy and independent person could be so ill.

13:46And then our dad presented Arielle and I with a choice. I'm going to fly out to visit her and help her and take her to some of her appointments. And this might be the last time that you get to see her and maybe say goodbye. We just don't know because she's very sick now. And that totally freaked me out. The idea of getting on a plane and taking off school and then going to see her so sick when I had these memories of her being so healthy. It was just too much for me. I decided not to go.

14:33Certainly, the person I am now would have gone, but that isn't who I was then.

14:47I never changed my mind about going to see Grandma Joy, but Arielle went. So my bat mitzvah was happening around this time. And I remember there being this big, like, hope that she would be able to come to my bat mitzvah. And I think part of that was me, but I also think part of it was maybe mom and dad. Like, there's this date in the future and we hope she makes it to that date. I think when it was clear that she wasn't going to make it, we went to New York and I remember her being in bed at the house Dad grew up in. I remember them asking me to recite my Haftorah portion from my bat mitzvah to Grandma Joy while she was in bed.

15:44and that that was super meaningful to her. And I didn't really understand that I wouldn't see her again.

16:06By the time our dad brought his video camera to Ariel's bat mitzvah rehearsal, My Grandma Joy was already gone.

16:17She eventually opted for hospice, where she got to spend time at home. And people, many, many people from all over the world, from all of her travels, came to visit her. She got to die in her own bed, in her own home, which is what she wanted. And Grandma Joy's death had a big impact on my family. I think she was the first person that I was close with who died. And I just remember feeling so sad. I don't remember so much the burial site, but I do remember going back to her house, this beautiful home outside of New York City, and it being just really cold, like there wasn't much life left in the house.

17:07There were so many people there, so many people we had never met before. She was this very important person to a lot of people, a lot of people who looked important. It felt heavy. And after Grandma Joy died, things changed. It really just felt like there was a big cloud over our family. And so it felt like it kind of kicked off a pretty not-so-great time in our family's lives. And then just a few years later, my dad's brother, our uncle Peter, died of cancer. He was 50. And after that, my dad was terrified of getting cancer himself. Like, he talked about it a lot. Like, it was almost as if he kind of expected it to happen to him one day.

18:02my dad had lived through the death of his dad my grandpa sam at a young age then the deaths of his mother and brother both from cancer and now he was diagnosed with the same cancer that took his mother she was diagnosed with a pretty late stage i believe it was probably stage three now looking back, she underwent a huge surgery called a Whipple. They open up the abdomen and try to take out a lot of the cancer, which was in and around her pancreas, which is a really central part of the body around lots of blood vessels and other organs. It's very intense. The recovery is lengthy and painful. And then she started chemotherapy.

18:48And according to my dad, it was It was really, really tough.

18:58Like most pancreatic cancers, my dad's was caught too late for surgery. And he was facing the same type of chemotherapy that his mother had been treated with. The traditional chemo that we give is quite toxic to the entire body. We haven't made a lot of advances, unfortunately, in that kind of treatment.

19:23You're listening to Before We Go. I'm Dr. Shoshana Ungerleiter. We'll be right back.

19:41when my dad first told me about the mass on his pancreas he asked me not to tell arielle but eventually i had to because when i talked to dad he said well we're not exactly sure what's going on. He kind of wanted to sugarcoat it, I think, for me and probably for himself. My family, my husband and two kids, we were traveling on a rafting trip off the grid in Oregon, which was awesome. But also you come back to like a million missed calls and text messages. And I think you called me and said that dad has been kind of not really open about, He's been having some medical challenges, and over the course of the last few months, he's been trying to get a diagnosis.

20:29And we've now kind of come to a conclusion that we're pretty sure it's pancreatic cancer. When my dad finally talked to Arielle about it, he didn't want her to worry. He said, you know, Shoshi has been helping me a ton to get into the right doctors. We contacted pretty much every expert on the West Coast, at least, in pancreatic cancer about what to do. And we were lucky that they took our phone calls and said they were willing to kind of weigh in. And during that first appointment with a specialist, I learned something that was really surprising. So I immediately called Ed. What do you remember from that call?

21:09I actually like remember a lot because it was so confusing. You said, I have good news that's also bad news, but maybe good news. And I can't remember how you said it, but you're like, I think it's bad news for me, but good news for my dad, but maybe it's good news for me. And I'm like, can you tell me the news, please? Like, I'm so, I can't track this. Can you just let me know? He said, well, based on your family history, this cancer might be genetically linked. Have you ever been tested for the BRCA mutation, BRCA? I knew what BRCA was, right? The mutation that's named after breast cancer. And I looked at him and said, what do you mean?

21:57Pancreatic cancer? You know, I always thought that was just related to breast and ovarian cancer. He said, actually, no, we now know that that BRCA1 and BRCA2 are associated with pancreatic cancer, melanoma, prostate cancer.

22:18And the specialist told us that a BRCA diagnosis might be really good news for my dad. Several of his patients with BRCA-mutated pancreatic cancers were taking a brand new approved therapy that was extending their life by many months and for some many, many years. And my jaw like dropped to the floor.

22:48Who are you and what do you do? My name is Ari Barron and I'm a medical oncologist and hematologist. And how and when did we meet? When you were a resident. Yeah. Yeah. That's right. And what do you remember of the day that I brought my dad to see you? Your dad was sort of warm, high-powered, reminded me a bit of my father. I was moved that you were advocating for him and also sort of felt for you it is difficult to negotiate the role of daughter versus the role of care provider. when those boundaries blurred, it can be particularly painful. So I sort of had compassion for you at the same time.

23:40What was it about my dad's medical history that stood out to you and made you suggest the BRCA mutation testing? Well, a couple of things. He had pancreatic cancer and I knew he was Ashkenazi Jewish as a context. About one in 40 Ashkenazi Jews have a BRCA mutation. That's around 10 times the number that's found in the general population. And I felt there was at least one other first-degree relative of his who had a malignancy that could be associated with a genetic predisposition. Even with all those factors, there was a good chance that my father's cancer was not BRCA-related. About 5 % or so of pancreatic cancer in the United States is thought to be associated with BRCA or BRCA-like mutations.

24:31So it's not commonly associated, but even though it's relatively rare, you really can't miss it because it does influence the care that we provide to the affected individual. And how much better is a patient's prognosis if their cancer turns out to be BRCA mutation related? I can't give you an exact number, but I'll just say that it's been very difficult to make any advances in the treatment of pancreatic cancer. Most people with pancreatic cancer never have potentially curable surgery. So by the time pancreatic cancer is discovered, usually it is advanced to the point where it's not amenable to surgery.

25:15And without surgery, there is no cure. and that's because the pancreas drapes over the aorta and a major branch of the aorta called the celiac axis that provides blood to all of the intestines and other vital organs in your abdomen. Given that most people don't have surgery, it becomes a chronic disease where you're managing it with radiation and chemotherapies and other agents. There are only a handful of drugs that really play a role, maybe five chemotherapy drugs that work in pancreatic cancer, and we combine them in these doublets or triplets to get people more time and to mitigate symptoms.

25:53But pretty quickly, you run out of those options.

25:59But recently, that started to shift. What we're seeing now is that treatment is not based just on the primary site of the cancer, but rather on the genetic mutation profile, including BRCA. and being BRCA positive opens the door to respond potentially to PARP inhibitors, P-A-R-P, PARP inhibitors. It's an oral drug. It's well-tolerated. There's a number of them on the market. After chemotherapy, one goes on a PARP inhibitor as, quote, maintenance that keeps the disease in remission for longer, and people do live longer because of it. So now, instead of maybe only having radiation and a handful of traditional chemotherapy drugs to choose from, Specialists have new options for treating some pancreatic cancers.

26:46I often say to my patients, there's sort of three pots of treatment that we can choose from. Chemotherapies, targeted therapies, and PARP inhibitors are an example of targeted therapies. And then finally, immunotherapy. Immunotherapy has definitely captured all of our imaginations because the idea of your own immune system fighting cancer for you is fabulous and very compelling. And pancreatic cancer in the absence of BRCA mutations doesn't respond to immunotherapy, but pancreatic cancer in the context of BRCA does respond to immunotherapy. So again, it opens a door to a potential line of therapy that otherwise is not there.

27:27Median survival with chemotherapy alone is about 11 months. When you start to add some of these other lines of therapy, you get more time, which is what it's all about. More time and more quality time. I have people in my clinic who are alive five, six, seven years into therapy with either PARP inhibitors or immunotherapy. And so for them, it made all the difference in the world. So even though only about 5 % of pancreatic cancer is BRCA related, it's still really important to test. You don't want to miss that opportunity for that person, but also, of course, it has a ripple effect throughout the family.

28:07If my father tested positive for a BRCA2 mutation, Ariel and I would each have a 50 % chance of testing positive too. And a positive diagnosis for either of us would mean a higher risk of developing certain cancers like breast and ovarian cancer. This knowledge would allow us to take proactive steps like increased surveillance, lifestyle changes, or even preventative surgeries to manage our risk. And it would have implications for the health of future generations, my niece and nephew, as they would someday need to consider genetic counseling and testing. So you really must be aware and do the testing.

28:48As soon as Dr. Barron recommended it, my dad got tested for genetic mutations that might have contributed to his cancer. It took several weeks for the test to come back, which did in fact show that he actually had two genetic mutations, BRCA and another one, and that he would be eligible for this new treatment. But what it also meant was that I needed to get tested, and so did my sister.

29:20even outside of the pancreatic cancer and other cancers in the family i actually should have been tested before because we're of ashkenazi jewish ancestry some guidelines suggest that all ashkenazi jews get tested for brachka mutations wow yeah i didn't know that either and it appears that i'm not the only one who missed that memo well that's us and i haven't gotten genetic tested Ari. I know, I'm behind the time. You gotta do it. This is what I'm saying. I know. Does it matter if I'm a quarter Sephardic? Probably not. I don't know. Get tested anyway.

29:58This was something that I never learned in medical school, which wasn't actually that long ago. But as it turns out, there's a lot of important things that we don't learn in medical school. Do you remember learning anything about death and dying or even palliative care in med school? I don't. Did we have a lot of curriculum in med school? I mean, I don't remember much. I truly don't remember. I think we maybe had one lecture, but honestly, it didn't stick with me. That's next time on Before We Go.

30:37Before We Go is a production of Podcast Nation and me. Our production team includes Karen Given, Abby Williams, and Madison Britt. Our story editor is Lacey Roberts. Original music by Edward Aiton. I'm Dr. Shoshana Ungerleiter. If you like what you've heard, please tell a friend. You can also leave us a review on your favorite podcast app. It helps people who need us find the show. And if you'd like to see photos and videos and connect with other Before We Go listeners, visit us on Instagram at BeforeWeGoPodcast.