Grandma Joy

Cold Open - ACT I

Dad on Video: Shoshana! Shoshana! Good morning!

Mom on Video: You ready? Is it on?

Dad on Video: Yeah. Remember, the audio is going, so… Hi, pumpkin!

I’m less than a year old in this video. And the man holding the camera is my dad.

Mom on Video: Say hello, dad. What's that weird black thing you have in your hand?

Dad on Video: Hi, Shoshi. Hi Shoshi! .. Shoshi, we're rolling it.

A few years later, my sister came along.

Mom on Video: Shoshana, have you been taking care of your baby sister? (Yep.) What did you do with her this morning? (Played on her, played on her, played on her, played on her, played on her.) Uh huh.

My dad filmed everything. And I mean EVERYTHING.

Shoshana singing: You are my sunshine, my only sunshine. You keep me happy, when skies are gray. You never know dear, how much I love ya. Please don’t take my sunshine away.

Shoshana: So, I don’t know if you know this, but I'm having all the videotapes from mom's house digitized.

Ariel: No, they should live on VHS forever. To never be seen again.

That's my younger, bossier sister, Ariel.

Ariel: 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.

Video: 2, 4, 6, 8, who do we appreciate? Lakers, Lakers. Yay, Lakers!

Ariel: 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.

Video: The Ungerleider cousins doing 5 foot 2. (5 foot 2…)

Ariel: Maybe some nudes of our wild hippie parents who would have naked hot tub parties with the rabbi.

Yep… there was some of that, too.

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.

Dad on Video: Shana, how about a moonwalk?

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Ariel: He 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.

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My parents were both Jewish – but they were also total hippies who wanted to escape everything that they had grown up around. So in the 1970s, they moved to the country outside of

Eugene, Oregon. Ariel and I were always the only Jewish kids in our schools.

Ariel: 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.

Ariel: 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. I 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 our area.

Melissa: There were probably three times as many Jewish kids in my school as yours. But that meant there was, 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.

Melissa: My mom was pregnant with me and your mom was pregnant with Ariel and they were both at the synagogue like extremely pregnant.

And so we all spent a lot of time together.

Melissa: 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.

And so I asked Melissa for her memories of my dad.

Melissa: My favorite-est, fondest memory. Your dad used to happily drive the three of us, you, your sister, and me, to Mount Bachelor 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.

We’d all pile into my dad’s Landcruiser.

Melissa: 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 songs.

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

But then, when I was 14, something happened that altered our lives.

Shoshana: Did dad change after Grandma Joy died? And in what ways?

Ariel: 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.

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And 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.

I’m Dr. Shoshana Ungerleider and this is Before We Go. Episode 2: Grandma Joy.

ACT II

Shoshana: We 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, that Grandma Joy was sick. That she had cancer.

Grandma Joy had been diagnosed with pancreatic cancer – the same cancer my dad would later develop.

Shoshana: 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.

Our Grandma Joy lived in New York and Israel. She was a remarkable woman. She studied archaeology, and was an author — she’d been the curator and then 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.

Ariel: We would go to Martha's Vineyard in the summertime and typically see her.

Shoshana: 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, um, which I always thought was so weird.

Ariel: And she would always come to Oregon for Passover with these like flourless chocolate cakes wrapped in tinfoil in her carry on. She'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.

Ariel: 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.

Shoshana: She was so healthy. She swam every day. She played tennis all the time. She traveled the world.

Ariel: We would get photos of her and like 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, independent person could be so ill. And then our dad presented Ariel and I with a choice. He said…

Shoshana: I'm going to fly out to visit her and, 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, so healthy. It was just too much for me. I, I decided not to go. Certainly, the person I am now would have gone. But that – that isn't who I was then.

I never changed my mind about going to see Grandma Joy. But Ariel went.

Ariel: 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.

Ariel: I remember them asking me to recite my Haftora portion from my bat mitzvah to Grandma Joy while she was in bed and that that was super meaningful to her. And I didn't really understand that I wouldn't see her again.

Video: (Ariel sings and then the family joins in) Adonai Eloheinu Adonai Echad Shema Yisrael Adonai Eloheinu Adonai Echad

By the time our dad brought his video camera to Ariel’s bat mitzvah rehearsal, Grandma Joy was already gone.

Shoshana: She 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.

Ariel: I think she was the first person that I was close with who died. And I just remember feeling so sad

Shoshana: 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.

Ariel: There 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.

Shoshana: It felt heavy.

And after Grandma Joy died, things changed.

Ariel: 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 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.

Shoshana: Like he talked about it a lot. Like it was almost as if he kind of expected it to happen to him one day.

My 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.

Shoshana: 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, where it's, you know, they, they open up the abdomen and, 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. And according to my dad, it was, it was really, really tough.

Like 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.

Shoshana: The traditional, you know, 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.

You’re listening to Before We Go. I’m Dr. Shoshana Ungerleider. We’ll be right back.

ACT III

When my dad first told me about the mass on his pancreas, he asked me not to tell Ariel. But eventually, I had to.

Ariel: Because when I talked to dad, he said, well, we're not exactly sure what's going on. He kind of wanted to sugar coat it, I think, for me and probably for himself.

Ariel: 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 and we've now kind of come to a conclusion that we're pretty sure it's pancreatic cancer.

When my dad finally talked to Ariel about it, he didn’t want her to worry.

Ariel: He said, you know, Shoshi has been helping me a ton to get into the right doctors.

Shoshana: 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 very first appointment with a specialist I learned something that was really surprising to me, I immediately called Ed.

Shoshana: W hat do you remember from that call?

Ed: I 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?

Shoshana: He said, well, based on your family history, this cancer might be genetically linked. Have you ever been tested for the BRCA mutation? B-R-C-A?

Ed: I knew what BRCA was. Right? The. mutation that's named after breast cancer

Shoshana: and I looked at him and said, what do you mean? Pancreatic cancer? I, 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.

And this specialist told us that a BRCA diagnosis might be very good news for my dad.

Shoshana: 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.

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Shoshana: Who are you and what do you do?

Ari: My name is Ari Baron and I'm a medical oncologist and hematologist. I serve as division chief for Sutter California Pacific Medical Center. And clinical professor of medicine at UCSF.

Shoshana; And how and when did we meet?

Ari: Let's see. When did we meet? When you were a resident, yeah? Yeah.

Shoshana: That's right. Yeah.

Ari: I was always fond of you and respected the work that you had done as a trainee, and personally liked you.

Shoshana: And what do you remember of the day that I brought my dad to see you?

Ari: Your dad was sort of, uh, 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 because 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.

Shoshana: What was it about my dad's medical history that – that stood out to you and made you suggest the BRCA mutation testing?

Ari: Well, a couple things. He had pancreatic cancer, and I knew he was Ashkenazi Jewish, as a context.

About 1 in 40 Ashkenazi Jews have a BRCA mutation. That’s around 10-times the number that’s found in the general population.

Ari: And I thought there was at least one other first degree relative of his who had a malignancy that could be associated with genetic predisposition.

Even with all those factors, there was a good chance that my father’s cancer was not BRCA related.

Ari: About 5 percent or so of Pancreatic cancer in the United States is thought to be associated with BRCA or BRCA like mutations. So it's not – 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.

Shoshana: And how much better is a patient's prognosis if their cancer turns out to be BRCA mutation related?

Ari: I can't give you an exact number, but, um, 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 and 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, 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. But pretty quickly you run out of those options.

But recently, that’s started to shift.

Ari: 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.

Ari: 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.

Ari: I 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.

Ari: You know, median 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 5, 6, 7 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-percent of pancreatic cancer is BRCA related, it’s still really important to test.

Ari: You don't want to miss that opportunity for that person. But also of course, it has a ripple effect throughout the family.

If my father tested positive for a BRCA2 mutation, Ariel and I would each have a 50-percent chance of testing positive, too. 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.

Ari: So you really must be aware and do the testing.

As soon as Dr. Baron recommended it, my dad got tested for genetic mutations that might have contributed to his cancer.

Shoshana: 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.

Shoshana: Even 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 BRCA mutations.

Ari: Wow. Yeah. I didn't know that either.

And it appears that I'm not the only one who missed the memo.

Ari: Well, that's us. And I haven't gotten genetic tested.

Shoshana: Ari!

Ari: I know, I'm behind the time. See, this is what I'm saying. Lord, does it matter if I'm a quarter Sephardic? Probably not.

Ari: I don't know. Get tested anyway.

This was something that I never learned in medical school, which wasn’t actually that long ago.

But, as it turns out, there are a lot of important things that we don’t learn in medical school.

Shoshana: Do you remember learning anything about death and dying, or even palliative care in med school?

Cara: I don't. Do you remember? Did we have a lot of curriculum in med school?

I mean, I don't remember much. I think we maybe had one lecture, but honestly it didn't stick with me.

That's next time, on Before We Go.

CREDITS

Before We Go is a production of Podcast Nation and me.

Our production team includes Karen Given, Abby Williams and Madison Brit.

Original music by Edward Aten.

I’m Dr. Shoshana Ungerlieder. If you like what you’ve heard, tell a friend. And please leave us a review on your favorite podcast app. While you’re there, don’t forget to hit the “follow” button.

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