Daughter, Doctor, Patient

COLD OPEN

Shoshana: What are the top three things you love about living in San Francisco?

Ed: I love the weather. Absolutely fantastic. That's number one. Number two, I love the Golden Gate Bridge. I would love to pitch a podcast on the Golden Gate Bridge right now to anyone that's interested. It has to be a hundred parts because there's a hundred things I love about it and it has to be four hours each episode.

Let's just say, Ed loves a lot of things about the Golden Gate Bridge...His passion for the city runs deep, and it's an integral part of his identity.

During the height of the pandemic, Ed showed his appreciation for our city -- and our lives -- by hosting online DJ dance parties. He called them his sunset sets.

[Thumb drive song]

Ed: I felt like people were scared and needed some release and I just thought like, I'm going to set cameras on our deck…

Shoshana: How many cameras, dear?

Ed: Well, it started with one, and then it escalated to probably six. Um, you know..

Shoshana: Including a zucchini cam.

Ed: We did have a zucchini cam. I grew a zucchini. And I'd play every week, Thursday Sunset Sets, and I played a hundred in a row.

[Zucchini talk]

These became a testament to Ed's connection with San Francisco.

[Wear a mask, stay home.]

Shoshana: And were there costumes involved?

[I’m a crocodile today or an alligator.]

Ed: Were there costumes involved?

Ed: Well, I don't know if a caftan counts as a costume, but there were caftans. There were unicorns, there were dinosaurs,

Shoshana: You were an astronaut.

Ed: I went hard. I did it – I did not halfway. I went all the way.

Our dear friend, Tracy Wheeler, was one of many who joined us online.

Tracy: Oh my God. He was dressed like a squirrel or something bouncing around, playing this music. The sun is setting, you know, over the Golden Gate Bridge in the background. I would tune in or sign in or whatever you would say. Um, and just enjoy this moment. Many moments he gave us.

<music>

Given Ed's profound attachment to San Francisco, you can imagine what a monumental decision it was when I asked him to leave the city and move an hour and a half away to Healdsburg to help take care of my dad.

Shoshana: So, set the stage for that happening.

Ed: (laughs) You should interview our therapist.

Let's start with something we agreed on. Ed and I both knew that my dad was going to be very sick for quite some time.

Ed: It was very clear that your dad was going to need support, and that we both wanted to support him. Driving back and forth an hour and a half each way or more with traffic was not going to be sustainable. So instantly got an Airbnb and then it became clear that This was going to be a hands on experience for a while. And we got, you know, through the course of several months lived in several Airbnbs until, um, you told me that you really wanted to move to Healdsburg, and that you wanted to have a house.

Shoshana: How did you feel about that decision?

Ed: Oh, well, I did not want to move to Healdsburg. We live in my favorite house on my favorite street in my favorite neighborhood in my favorite city. And it was hard for me to reconcile your clarity of view and your determination and the obvious path of what was going to happen with how I felt about it.

But our friend Tracy saw Ed's decision to move to Healdsburg and become a caretaker for my father in a different way.

Tracy: I thought, of course, because the number one thing Ed loves is you. I mean, of course he did. That's Ed.

I will be forever grateful that Ed was willing to leave his favorite house on his favorite street in his favorite neighborhood in his favorite city to help take care of my dad. Because I was already juggling being a doctor and a daughter. And soon I was going to become something else.

I’m Dr. Shoshana Ungerleider and this is Before We Go, Episode 6: Doctor Becomes Patient

Act II

After my father’s genetic testing came back positive for a BRCA mutation, we had hope… his long-term prognosis had improved.

Shoshana: Because of the BRCA mutation, there was this option for a new targeted therapy that was taken by mouth and didn't have the same kind of side effects as traditional chemotherapy. That sounded like a really good option, especially because it could increase his survival and give him good quality of life. But it also meant that he had to undergo the traditional IV chemotherapy that makes you really, really sick.

Shoshana: So my dad called all the time. Night and day. Do you remember any of those phone calls and what he was saying?

Ed: I mean, yeah. Your dad was the kind of guy who wouldn't take no for an answer. I don't mean that in like a good way. I mean that as in like, you know, the doctors tell him something really serious that he needs to do. And if he didn't like it, he would call you to try to get a second opinion. Or maybe you were the third opinion. And there were many times that it was clear that it was, like, difficult for you because you could tell that he was – not manipulating you, but was not giving you, like, a genuine question. He called, like, to try to get something he wanted. He was like, he was getting caught in really like…

Shoshana: Minutia.

Ed: Yeah, he was, he was not happy.

Shoshana: He wanted to call me every day and tell me about his bowel movements. And I just was like, oh man, okay. Uh… It's not that I don't want to know this or can't help you. It's that you need to listen to what your doctor's telling you, you know. That was a hard line to draw for me, because I, very often for the people that I love, try to be as helpful as I can be, medically, and for him, the best thing was to stay out of that stuff. To let him speak directly with his wonderful team of doctors and nurses, because when I would get involved, it would get more complicated, or I would tell him something different than what his doctor had said. And so he would hang on to that instead of doing what he was told to do.

Shoshana: It was very stressful, the whole thing, and figuring out that I really needed to set boundaries for myself to focus on my own health, to prioritize what I needed to do, not knowing his prognosis or how long he'd be around. It was the hardest lesson in boundaries and self care that I have ever faced.

<music>

Shoshana: Aunt Jeannie and Uncle Bill came to visit. Can you set the scene? Where were we? What, what did we talk about?

Aunt Jeanie is my dad’s younger sister.

Ed: Uh, We went and had sushi. We sat outside.

Ed: You started talking to Jeanie about your surgeries and your dad and what a tough patient he is.

Shoshana: And me just feeling overwhelmed by it all.

Ed: I don't think that's what you said. I think it was clear you were overwhelmed. But you – you know, you're a problem solver. And your dad was presenting us with many different problems. And Jeannie, in I think, I mean, the most beautiful, direct, amazing way, was just so clear that we can't solve this for your dad. You are his daughter and not his doctor. Jeannie was very clear that, like, it's inappropriate, and it is okay for you to draw a boundary around him and his medical care. And that you and I, but you, are going through something that is incredibly intense and serious with your own health journey and that you should feel empowered to make the space or take the space to what you need to do for you.

Shoshana: And how did things change after that, if at all?

Ed: I feel like before, you had taken your space to do like your day to day like micro things you had like micro boundaries. You're like, I'm working out today. I don't care what's happening. I'm going to work out today, But that after that you really, I think, much faster than me, I mean, you were incredible in that you took this feedback on board, you agreed with it, and you instantly started living it. And I was kind of like, oh, wow, yeah, we should figure out how to do this, and you're like…

Shoshana: We're doing it.

Ed: We're doing it. Dad, I can't talk to you right now. Dad, you need to talk to your doctor about this. Dad, I am not your doctor.

Shoshana: Dad, I have to have surgery in three weeks, so…

Ed: You better get ready.

Shoshana: Yeah.

Despite everything that was going on with my dad's health -- and his bowel movements -- I never wavered on my decision to have preventative surgery right away.

Shoshana: Never having had surgery before. That was really big. That was like a hard thing to wrap my head around.

Shoshana: But I could just feel it. I knew that this was the right thing for me and what I had to do and, um, I definitely felt guilty about this idea of focusing on myself when my dad was sick. But it just – there are a few things in my life where I've felt so resolute that I needed to do this and this was – and this was one of them.

The first procedure – scheduled for September – was a laparoscopic hysterectomy and salpingo-oophorectomy, which would remove my uterus, ovaries and fallopian tubes.

Shoshana: And laparoscopic just means that it's less invasive. They don't have to cut you open, which is basically how we do that surgery now. Less recovery time. Less pain.

As the day of my surgery approached, I decided to record some voice memos about how I was feeling… in case I ever wanted to share this story.

<voice memo beep>

Shoshana VM: People keep asking me, sort of how I feel about having surgery. And honestly, the feeling that comes to me the most is I feel grateful. I feel so grateful that I can do something to lower my risk of getting really, really bad cancer. I've seen young people with ovarian cancer, which is often caught very, very late and is almost universally fatal. I really, I really want to do everything I can to not have that happen to me. So that's why I'm having surgery.

<voice memo beep>

Shoshana VM: So the surgery's in five days and I'm ready, I guess, but I just, yeah, I just feel like it's a lot. There's so much to get done before surgery. I have no idea what my recovery is going to look like. And I have asked maybe 15 different people, people who've had the surgery before, doctors, people who know people who've had the surgery. And everybody's giving me totally different answers about what recovery is going to be like, how long I'm going to be out of work, away from exercise, kind of doing the things I want to be doing.

<voice memo beep>

Shoshana VM: My surgery is tomorrow, like, 24 hours away. And um, for the first time I'm, I'm feeling more nervous. I think before I was just like, let's get this done, has to be done. Now I'm, I'm just nervous, not so much for, for the surgery itself, but more of like the uncertainty of how I'm gonna feel afterwards. The ovaries, you know, have a pretty important function in the body. They secrete hormones. So, what's it gonna be like to not have that stuff on board? I have no idea. But when I think about that, it's just, the alternative to is like so – potentially, potentially so bad. I just got to focus on that kind of.

<voice memo beep>

Shoshana VM: It's the night before surgery. Um.. I'm probably the most nervous that, uh, I've – I've been just because you just never know, right? There's millions of women that have come before me that have had this done, but there's always a risk of, of major complication, um, even death with surgery.

<voice memo beep>

Shoshana VM: Today is the day. I'm here for my surgery, sitting in the waiting room, just waiting, waiting to be called back. Waiting rooms just feel really heavy, like heavy places. I've walked through a million of them and talked to people in them as a doctor, but I haven't waited in one as a patient for surgery before. I'm feeling nervous, but I'm ready. I'm ready to go.

Shoshana: Didn't the surgeon, like, show us pictures of his dog or something on his phone?

Ed: (laughs) Yeah, well it's just another day in the office, I mean, it's just, oh yeah. And like, you know, you'd met him a few times at that point, you knew him. And so, you know, he's just checking in, he's ready to go. Like, I remember being really impressed by your care team, and I remember, like, telling myself, like, this is going to be okay.

And it was okay.

Shoshana: It was actually a pretty easy surgery. You know, I was not feeling great for a couple of weeks, but pretty soon after I was back to working out every day and back to my regular life and felt really good.

But the surgery had removed my ovaries. And now, without them, nearly all circulating estrogen had been removed from my body. It’s called “surgical menopause.” And it meant that over just a week or two, my body had undergone a change that usually takes place gradually over a decade or more.

Shoshana: At first, I didn't notice much. And then, a few weeks in, I started getting these hot flashes where the heat would just come from the inside, kinda out of nowhere, and I would start sweating. They only lasted maybe a minute or two, but they were so distracting and coming like, once or twice an hour. When I was home, I would put ice packs, like, in the back of my pants to try to cool me down while I was working. And then at night, it was pretty unbearable, just waking me up all the time with drenching sweats.

In menopause, many women deal with hot flashes. So I tried to normalize what was happening to me.

Shoshana I felt like it was important for people to realize, and men too, that this is what a lot of women go through. So I remember being at like, a fancy dinner, out with like, ten people, and my husband, and starting to have this hot flash, and like, talking about it. And then I actually asked the waiter to bring me like a cup of ice in this like fancy restaurant. And he looked at me and I was like, I'm having hot flashes. Can you just bring me some ice? And I literally just like put ice like on my neck like during dinner and people kind of looked at me like, what is she doing? And I was just like, this is what it is. This is normal.

And even though I was experiencing something that many people go through, it felt just overwhelming – especially with everything else that was going on. My sister Ariel felt it too.

Ariel: No one told me that I was going to immediately turn into a psychopath of like crazy hot flashes and mood swings and night sweats and brain fog.

For Ariel, sometimes those mood swings would happen at odd times.

Ariel: I was with my son and I was like, tucking him into bed. And we were talking about – I can’t remember what we were talking about – but he's like obsessed with babies. He's my 8 year old boy, but he like loves babies, loves looking at baby videos of himself and his sister from when he was little. And he wanted to talk about where he came from in my tummy. And so, you know, in an 8 year old appropriate way, I talked to him about, you know, babies don't grow in tummies. We actually have body parts, you know, called a uterus where the baby grows. And after that conversation, I just remember feeling this overwhelming sadness of like, my baby's first home is like in a bio bag somewhere in a dump. I don't know. I don't know what they do with, with your parts after they are surgically removed. But I just remember feeling super sad. And I also had crazy raging menopausal hormones And I think had I known that could potentially happen as a byproduct of the surgery, I probably would have thought about the timing and dad's illness a little differently. Because I think what I was going through after the surgery – was insane. And so, I was, you know, going through that grieving process of seeing dad kind of slipping away and going into hospice and not sleeping and just kind of being a train wreck of emotion. Like I couldn't regulate because I was going through menopause. Or had gone through an immediate menopause

The symptoms of surgical menopause were such an issue for my sister and me. And we both got really conflicting advice on what to do about it.

It turns out, my sister and I aren’t alone.

Dr Haver: Surgical menopause is so much more devastating than natural menopause for so many women and the health risks ensuing from that just don't seem to be being addressed.

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

Act III

I probably spoke to 8 women’s health specialists and got 8 different answers… I wanted to figure out why, so I called yet another expert.

Dr Haver: My name is Mary Claire Haver, and I am a board certified OBGYN physician. And I've chosen to focus my practice on the care of the menopausal woman.

Shoshana: So a big part of this podcast is sharing my experience testing positive for the BRCA2 mutation and then following through with risk reducing double mastectomy and surgery to remove my fallopian tubes and ovaries. And then after the surgery, right, I was thrown into immediate surgical menopause.

Dr Haver: Surgical menopause. Yeah..

Shoshana: I got a lot of conflicting medical advice on hormone replacement and whether it was appropriate in my case. In talking to my Surgeon, he said, you should absolutely avoid hormones. I thought, oh, well, okay, that makes sense because of the BRCA and everything I was taught. Then I talked to a few more people. And they said, no, you absolutely have to go on hormones. You have to. Especially since you're having a mastectomy, you're going to have virtually no breast tissue left. Your risk of breast cancer is close to zero. Very, very close to zero. You need to protect your heart and your brain and your bones. As a woman's health expert, do you hear this sort of story a lot from people?

Dr. Haver: I mean, this is my world now. So all the time. You should be allowed a modern approach to this and a true, you know, buffet of your options so that you can make a decision that you feel like it's going to work best for your life. Because surgical menopause carries its own risks and those are risks that you're willing to take on so you don't get breast cancer based on your genetics. But, you know, most people in your situation are not being given a full picture of, okay, now these are the things we need to do to decrease your risk of heart disease and dementia and Alzheimer's and stroke.

And this lack of information and even misinformation is not just happening to people like Ariel and me who have experienced surgical menopause. Menopause will happen to every person who was born with ovaries – and Dr. Haver says many of them aren’t getting the information they need from their doctors.

Dr Haver: I just feel like it's under education. When I myself – now again, I trained many years ago. But I was a residency program director until 2018. So I know the curriculum up until then backwards and forwards. And guess what? It hasn't changed. And in medical school, I maybe got one hour one lecture on menopause, yeah? Hot flashes, ovarian function declines, the end. Then in residency, I think maybe five or six hours out of a four year curriculum of lecture only we had no clinic, no nuances. We never discussed perimenopause. Like nothing.

Perimenopause is a transition, when hormone levels fluctuate, leading to changes in menstrual cycles and commonly, symptoms like hot flashes, sleep disturbances, and mood swings. It can happen as early as ten years before a person’s last period. Which means for many people, it can begin in their early 40s.

Dr. Haver: And so when I hear someone being told. You can't be treated until you're a year after your period. We don't treat perimenopause. There's nothing we can do. Yada, yada, yada. It's simply a lack of education. This is a systemic failure of the medical system for females.

When most people think of menopause symptoms – some of which begin in perimenopause – they think of hot flashes and night sweats. Maybe heart palpitations. But those are just a few of the possible symptoms that can happen when hormone levels decrease.

Dr. Haver: Our skin, our bones, our eyes, our teeth, our hair, our kidneys, our gut, our stomach. Asthma. I mean, it's 70, 80 symptoms that are linked to hormone changes. And it's different for each one of us. So, you know, in medicine, we like a duck. It walks like a duck, it quacks like a duck, it's a duck. There's not a really great duck, other than a duck with no period and hot flashes for menopause, but that's only a small percentage of the population who acts exactly like that.

Shoshana: And for some people, not everybody, but, but a lot of us, these symptoms can be debilitating, ye s?

Dr Haver: Mm hmm. Yeah. So and it depends on the symptoms. So for example, musculoskeletal syndrome of menopause happens to 80 percent of us, So that's arthralgias, joint pain, hip pain, back pain, frozen shoulder, you know, with no injury. But no one was assigning it to menopause. You're just getting older. This is what happens. And then when we look at hypertension, insulin resistance, triglycerides, all of those changes accelerate with no changes in diet and exercise. These are things that happen with aging alone. So this happens to men as well. But what makes us special is these cardiometabolic things accelerate through our menopause. I cannot tell you how many patients I see watch their LDLs rise. You know, watch their specific markers for heart disease start to rise at a much faster rate and they've done nothing different other than go through menopause.

Shoshana: Yeah. It's wild to me how few people, and myself included, right, weren't thinking about my bones, my muscles, my heart health, my brain health as it related to, you know, hormones. It just wasn't like on my radar.

For me, the abrupt loss of estrogen probably ten years before it would’ve naturally happened, had its own set of issues. It put me at a higher risk for osteoporosis, heart disease and dementia.

This whole experience got me thinking about why we aren’t doing a better job of caring for women in midlife and really addressing these issues that so many face.

<music>

A lot of what we know about hormone replacement therapy comes from the Women's Health Initiative study which started in the 1990s. It’s called WHI for short. This was a massive undertaking - the largest randomized clinical trial in history involving only women. It studied health outcomes for 160,000 postmenopausal women with multiple arms looking at the effects of hormone replacement… designed to assess whether hormone therapy, we call this HRT, could prevent diseases like heart disease, cancer, and fractures in postmenopausal women. This study had tremendous influence because

of its size and because it was a randomized-controlled trial…

which is the gold standard approach we have for answering questions in medicine.

<music>

Now, here's where things get interesting. The trial was stopped earlier than planned. Why? They found small but statistically significant increased risks of cardiac events, strokes, blood clots, and breast cancer.

But here's the kicker: when I dug deeper, I discovered something really surprising. The results of the WHI were widely blown out of proportion, which lead to unnecessary fear about HRT. The study was designed to evaluate HRT for disease prevention, not for managing menopause symptoms, but its findings were misinterpreted as a blanket warning against all hormone use. Media sensationalized the risks, focusing on relative increases in breast cancer and heart disease without explaining that the absolute risks were quite low. And, the study's results, based on older women with an average age of 63,, were incorrectly generalized to younger women starting HRT in their 50s, for whom the risks are lower and the benefits often outweigh the concerns.

The media made things worse, sensationalizing the findings without explaining the nuances. Later research that clarified these issues got way less attention, so misconceptions persisted.

<music ends>

Even today, more than 20 years later, misinformation continues to confuse the public, despite the WHI’s actual findings showing that HRT is still a valid option for menopausal symptom relief.

Dr. Haver: It's really easier for the medical system to say, HRT is bad. Don't take it. Let's move on, you know? Instead of having this nuanced conversation around, well, you're really low risk, formulation matters, we have these newer drugs out, we know that you'll probably live a longer, healthier life with hormone therapy, you know, but but let's look at your individual risk factors and then you make a decision what you want for your body.

Shoshana: It took me a few months to decide what to do because I was getting conflicting expert opinions about this, but Once I decided to go on hormones, within about 10 days, the hot flashes completely stopped. I felt totally normal.

Now I want to make a medical disclaimer moment, I’m not saying that every woman at every age

should go on hormone therapy. This is an individual discussion you should have with your healthcare provider based on your specific circumstances.

<music>

The surgery to remove my uterus, fallopian tubes and ovaries was in September, and I scheduled my double mastectomy with reconstruction for December.

Shoshana: The breast surgery was really hard. I really second guessed that one big time. It was just later and my dad was a lot sicker. And the last thing I wanted to do was to have surgery and not be there if he was dying. I called like all of my doctor friends to ask their opinions on that. And everybody said, you need to focus on yourself. I definitely made the right decision. Um, but that was a really, really hard one. Felt really selfish.

<music>

I had worked so hard to set boundaries with my dad and his care, but while I was still in the hospital recovering from that surgery, my dad had a problem that I couldn’t delegate to someone else.

Ed: I walked out of the room to, like, get food or something. Like, I didn't leave the hospital – I went and, like, got a candy bar or something. And came back, and you were on the phone screaming. And for those that don't know Shoshana, she is not a screamer. Your dad's insurance had denied this medication that he needed, the thing we'd been doing all the chemo for. And you were, like, eight hours out of the operating room? I don't even remember because we're still in, we're, you're still in the hospital and I remember you crying when you hung up. And you never cry. I'm the crier. And you weren't like full tears, but like, if you know you the way that I do, something very bad was going on and you were very upset.

Shoshana: Yeah.

Ed: We started workshopping it. So like, we're literally there, supposed to be, thinking about you and your recovery, and it immediately is like, DEFCON 5 for getting this medication for your dad.

That moment was a profound reminder of how intertwined our roles as caregivers and individuals can be, no matter how much effort we put into setting boundaries. Even in the midst of my own recovery, I couldn't escape the responsibility I felt for my dad's well-being.

Ed: Yeah, and you're like, on your phone calling people, you're messaging the CEO of the insurance company on…

Shoshana: Who I happen to know.

Ed: You're like…

Shoshana: No, I texted him. He's my friend.

Ed: Yeah. But you were like, no holds barred. We are solving this problem. And that was like, major crisis on top of you being pretty sick. I mean, not sick, but like, you were in a lot of pain.

Shoshana: After having the other surgery and how hard pain medicine was on my GI system, I decided to not take any pain medicine from the breast surgery. At least not opiates. So I relied on Tylenol and Advil, um, which was interesting.

Shoshana: I stayed overnight in the hospital. I was – went home with big, huge incisions and bandages and drains. I wasn't expecting that. I don't – I was, but I wasn't like, I kind of didn't take the time to think about any of that stuff.

Ed: There was also like, an issue where there was like a segment on your breast that we weren't sure if it was going to be okay or not, like, we weren't sure if it was going to be healing correctly, and it was in an area that you couldn't see. So I was like constantly reporting to you. on how it was looking, and I do not have knowledge to communicate this. There was just a lot of really inadequate conversations about breast healing and how – how surgical sites looked and me trying to explain to you and taking pictures and then deleting them off my so I wouldn't have random, like, surgery boobs on my phone. It was, it was crazy time. It was crazy.

Shoshana: Moving was really, really hard. Like even just getting out of bed, I had to get this, like, you know, those craft o matic adjustable beds so that I could press a button and it could sit me up because I couldn't move. Um, we really take those things for granted.

Shoshana: It was about a month in. I showed up to the surgeon's office for one of my post op visits and I said, I want to start jogging. And I wasn't even really a runner before. I am like a workout freak. I exercise every day. It's like a huge part of my life. And when I can't move my body, when I can't sweat, it really messes with my mental health. He said, you know, if you can tolerate it, go for it. So I like strapped my chest down and got on the treadmill and just started going. And I was like, Oh, this hurts, but I'm going to keep going.

Ed: I just thought you are so you of the time. Like there's just – I'm married to Shoshanna Ungerleider and this is who she is. And there's no need, and there's no use in providing feedback. Um, this is what's going to happen. And maybe I should be glad that she waited four weeks.

Jogging made me stronger and more fit than I had been in years. I was about to need all of that strength. Because my dad was about to get really, really sick.

Ed: I remember telling him on the other side of chemo, like, there's hope. Right, we have to do chemo to knock down the cancer. It's horrible, but that because you do have this mutation, there are therapies that really have given people years of good life. And that if we can cross this bridge, that there is something on the other side that's worth going for.

That's next time on Before We Go.

Line for the credits:

And if you’re looking for a provider that’s been trained in menopause care, I recommend visiting menopause.org to find someone in your area.