Season 4, Episode 3

Steven Petrow / Julie

Navigating Medical Aid In Dying as a Surviving Sibling: Steven/ Julie

In this episode, of The Broken Pack: Stories of Adult Sibling Loss,, author Steven Petrow joins Dr. Dean to discuss various aspects of sibling loss, grief, and medical aid in dying. He shares his personal experiences with losing his sister, Julie, to a six-year ovarian cancer experience, navigating his responses to her choice, and their perspectives on end-of-life choices. The conversation highlights the importance of privacy, listening, and respecting the wishes of cancer patients and etiquette in both grief and cancer. Steven Petrow also shares Julie’s voice and hopes for  expanding access to medical aid in dying for terminally ill individuals . This episode also sheds light on the unique dynamics of sibling relationships and their influence on individuals’ identity and well-being.

Content warning: This episode discusses Medical Aid in Dying.

Links Mention and  Other Related Links:
Clearity Foundation – https://www.clearityfoundation.org – An organization that Julie, Steven, and their family found support from. Clearity supports people with ovarian cancer and their families.

Empathy Cards (some may be snarky, others are not, sibling loss ones support The Broken Pack™)- https://tinyurl.com/34ab2js8

FAQ on MAID- https://www.compassionandchoices.org/resource/frequently-asked-questions/

Steven’s articles on Julie & on MAID
https://www.nytimes.com/2023/12/28/opinion/medical-aid-death-choice.html

NPR Article on Steven learning to understand Julie’s choice- https://www.npr.org/sections/health-shots/2024/02/25/1233668101/medical-aid-in-dying-cancer-pain

Steven’s website: https://stevenpetrow.com

Steven’s article on cancer etiquette –
https://www.mariashriversundaypaper.com/steven-petrow-cancer-etiquette/

Sibling loss survivor Steven and sister, Julie
Transcript

S4E3 Steven / Julie (YouTube)

Dr. Dean: [00:00:00] Hello and welcome to the Broken Pack, a podcast focused on giving adult survivors of sibling loss, a platform to share their stories and to be heard. Something that many sibling loss survivors state that they never have had. Sibling loss is misunderstood. The Broken Pack exists to change that and to support survivors. I’m your host, Dr. Angela Dean. I had the pleasure of speaking with Steven Petrow. He is an award winning author and journalist, but most importantly for this episode, he is a brother. In this interview, I learned a lot about Julie and who she is, as well as how Steven processed her dying and death, about the sibling relationship, both theirs and in general, about cancer, connection and so much more.

Take a listen. [00:01:00] 

Content warning, this episode discusses medical aid in dying. All right. Welcome to the show. I’m so honored that you’ve agreed to do this interview. What would you like our listeners to know about you? 

Steven Petrow: Well I’m also glad to be here with you.

Dr. Dean: Thanks.

Steven Petrow: Words are funny things. I’m glad to have a conversation with you. Circumstances are, ones I wish that I didn’t have, but, but that’s one of the lessons out of all of this. So I guess, what do I want people who are listening to know about me? Probably the most important thing is that I am the brother of Julie Petrow Cohen.

 Although she did pass and last June of 2023, I get confused about my tenses on purpose because I don’t like saying, and I don’t know if it’s actually grammatically correct to say I was the brother. I think I still am the brother So that’s the headline. [00:02:00] I’m a writer. I write nonfiction books. During Julie’s illness, she had ovarian cancer for about six years. I, I wrote two books. The first one is called Stupid Things I Won’t Do When I Get Old. And that was, a lot about my parents and all the things that Julie and I and our brother thought they were doing wrong that we were for sure going to do better. And, I’ll speak for myself, and not sure that’s as easy as I thought it was when I wrote that book. The second book, is called The Joy You Make, which will be published in September, and it’s about how to find joy in challenging times and dark times, which was really my lifeline during much of Julie’s illness. 

Dr. Dean: mm hmm 

I’m interested to hear more about that and definitely look forward to reading that book. How have you been able to find joy through grief and loss?

Steven Petrow: So, part of what I learned in doing the research for this book, and, I neglected to say, by day I’m a journalist, I write for the Washington Post. So I have decent, if not good, research skills, and, you know, we tend to think of joy [00:03:00] as, the fireworks, It’s the big emotion. And, it’s orgasmatic in some way.

But, as I both was reading in the literature and experiencing life, there are all kinds of joys. There are smaller joys, there’s anticipatory joy. There’s the weird joy of, schadenfreude, which is when we take joy out of the, mishaps and misgivings of people that we know.

So I came to see that there’s a lot of different joy out there in the world and I didn’t have to just be trying to find the big bang of one. 

Dr. Dean: mm hmm 

Steven Petrow: What I learned mostly during this journey was about how important connection is to others in both creating gratitude and creating joy. During Julie’s illness- we’d always been close as siblings- we developed an even closer relationship that, really fed me, and, I think fed her, giving us, this notion of, a lifelong joy and that was true in, for our entire family. We’ve been very open.

Julie led the discussion about death and dying [00:04:00] and how to talk about these topics. We all kind of joined her in that conversation, and that brought us closer. I remember early on before we started this conversation, I said to Julie’s best friend, “Jenny I think she’s going to die.” And Jenny said, “Well, why don’t you talk about that with her? She already knows.” 

Dr. Dean: mmm 

Steven Petrow: And that was part of the process of coming out, so to speak, 

Dr. Dean: mmhmm 

Steven Petrow: about all that. But, connection is very important to joy. Soit was a major theme of my experience, during her illness.

Dr. Dean: I wholeheartedly would agree with that as far as joy. I love how you pointed out the different aspects and definitions of joy. In my work as a psychologist, something that people struggle with, they just want to be purely happy in the way that society tells us that we should be. yeah.

Steven Petrow: What’s interesting is that they want to be happy, and a lot of people conflate joy and happiness, and I have to admit, I was one of them at a certain point. But when you think about it, one of the beauties of joy is you [00:05:00] can experience other feelings along with joy. You can feel sorrow, you can feel grief.

Happiness in a way is you know, hog center stage. You feel happy and sad. you’re happy. That is the way I’ve come to understand it. It’s more the shiny cousin of joy. It’s more driven by external circumstances. You got engaged. You got a job promotion. A fantastic vacation.

I’m happy. One of the scholars I interviewed said basically, joy is a mile wide and a mile deep, happiness is like an inch wide and an inch deep. 

Dr. Dean: Yes. 

Steven Petrow: I’m not dissing happiness because when all those positive haha emotions are good ones.

Dr. Dean: Yeah. Thank you for that. You mentioned that you had a close relationship with your sister. Do you want to say more about that or about her?

Steven Petrow: Yeah. So I was the oldest of three. She was the youngest. Our brother is the middle child. And, we were both always troublemakers. I was known as the troublemaker. She was known as the instigator. I’m a word I’m not really sure what the difference is, [00:06:00] except that we’re basically, always up to something, often pinning it on our brother, the mediator.

So we had that sort of innate connections to start off with. And then as things turned out, we were both queer and that’s something that I learned about her I guess when I was about 20, and she was 16. I was in college, and I came home for one of the holidays, and because we had been close, and because I had started coming out, I wanted to tell her.

 But I wasn’t very good at it, or very experienced that point. I made a mess out of it, and finally just said, “I’m gay.” 

Dr. Dean: mmm 

Steven Petrow: I remember that we were in her childhood bedroom. And she started, laughing, and she had this, she always had this very Julie laugh. And I thought to myself, this probably was a little bit ahead of the game, she can’t quite process it. And then she says, “Well,” when she can finally breathe and speak, ” I think I’m a lesbian. I’ve already, had a girlfriend, or I have a girlfriend.” I remember saying to myself, because I didn’t really know any lesbians then, Oh my god, my sister’s a lesbian. So, so, that was a real [00:07:00] bonding moment. We had others along the way for sure.

I had testicular cancer in my 20s. and Both siblings were very attentive and we’re very close.So, when Julie got sick, six or so years ago, I was able to step in a certain way and be her advocate, do a lot of research. I’m a health journalist. I have a fair amount of chutzpah or moxie, so I’m not afraid call anybody and ask for something, especially when it concerned her.

Dr. Dean: The protective big brother with resources sounds like a good thing to have. It’s very evident that you loved her very much.

Steven Petrow: Agreed. Well, I hope.

Dr. Dean: Yeah.

I’ve read several of your recent pieces and, I’m intrigued by both the cancer etiquette

Steven Petrow: Mm 

Dr. Dean: piece that you just wrote, especially given what I do professionally, 

Steven Petrow: mmhmm 

Dr. Dean: and also the reason that we’re talking, I read your article on medical aid in dying. Do you want to share more about that and Julie’s process?

Steven Petrow: Sure. So, medical aid in dying, it’s also, as it’s known as death with dignity, the right die. It’s called different things in different states [00:08:00] and the terminology has evolved over time. it is basically an individual taking end of life medications to hasten their own death after they have received a terminal diagnosis. Julie lived in New Jersey, which is one of the 10 states where MAID, as it is called, is legal, plus Washington, D. C. Very early on in her illness, I would say maybe in year two or year three, over five and a half years, she began researching it 

Dr. Dean: mmhmm 

Steven Petrow: and trying to understand how you needed to qualify so that if, or when the time came, she was ready.

And That’s always how she was.She hoped for the best. She plannedfor the worst 

Dr. Dean: mmhmm 

Steven Petrow: and she tried to live in the moment

 So by the time this became a conversation within the family, which was around the time she decided to end treatment, a year ago this week actually, she knew the ins and outs of it.

She knew you need to, make several, requests, oral, written, you can rescind at any time, 

you need, one doctor to sign off and you need someone [00:09:00] else who is a medical professional to sign off who has no interest whatsoever. So, she and her wife, Maddy, who is her, life partner, spouse, all of this for 35 years, they did all of that, together.

 She didn’t know, like many people don’t know, whether she was going to exercise that choice. But I can say the fact that she knew that she had that up her sleeve, so to speak, gave her a great deal of comfort in terms of knowing that she could end her pain and her suffering.

Dr. Dean: if or when it became unbearable. And we had come to understand from her oncologist that because she already had liver metastases, they would likely continue to grow and, that would be a fast and a painless death.

Mm-Hmm. 

Steven Petrow: Unfortunately that turned out not to be the case in her situation. And, there were more and more pain medications involved, fentanyl, morphine patches, and she was still in a great deal of pain. So in mid to late June last year, she decided, this isn’t going anywhere positive. I am in an [00:10:00] incredible amount of pain. It’s time to exercise this choice. That’s why I signed up. And they already had the medications in the safe at that point, four or five, that you mix with apple juice, and then you just take a big chug.

So she was prepared and she had prepared us as well, and I have to say, I had to travel a little bit of distance over time to be there because initially when we started talking about MAID, I remember saying to some friends, “So we’re going to know that Julie is going to die on this day, at this hour.” That was so unfamiliar to start off with. It was so finite, and for me, it was all mixed up with, she was going to be gone then. She was going to leave us. And I guess two things happened during that period of my transition. One, I saw her suffering deepen, and, 

Dr. Dean: mmhmm 

Steven Petrow: it was very clear to me, it [00:11:00] was time for an out here. 

Yeah, so basically during that time, I saw that she was suffering a great deal more. It was time. The other part was saying that I supported her choice to use medical aid and dying did not mean. I wanted her to die. It did not mean I her to leave us. I had to tease those two apart. And, I think that actually even in just talking to you now that’s still just hard for me. The finality of her not being here is still very hard. It’s about nine months later. I know that sometimes my mind, it just turns into a blizzard when I go into some form of overload or denial. 

Dr. Dean: Yeah. No, that’s understandable. And I think even with chronic illness in which we anticipate somebody’s death, so that anticipatory. mourning state can get in, you still don’t know when the person’s gonna die, unlike with medical aid in dying. And [00:12:00] so it sounds like that was a unique aspect to processing this grief, but also being able to say, I support you and I desperately don’t want this.

Steven Petrow: And she was very clear. I don’t want to leave you all. 

Dr. Dean: mmhm 

Steven Petrow: That was about

 the last thing she said. We’re so, binary in this world these days: this or that, and, this is a really good example of trying to hold two things at once. This will ease her suffering, and this is going to be hard for us to leave other.

Dr. Dean: Yeah, for sure

 I guess the other thread in all of this is, Julie wanted me to talk about this after she died. She wanted me to talk about her mindset, talk about her decisions, talk about why this is important for more people to have the choice.

Dr. Dean: It’s really by circumstance that New Jersey was one of the states and that they lived in New Jersey.

Mm 

Steven Petrow: Most of the country does not live in a place where it’s legal. Most states that have MAID currently do not allow non residents to just come over and do it there. A few do, I’m not a hundred [00:13:00] percent sure about those. It’s a topic that’s hard to talk about in the media because it falls then into the larger challenge that we have about talking about death and dying.

We don’t like talking about 

Dr. Dean: exactly 

Steven Petrow: our culture. I’ve done a fair amount of research on sort of American customs around death and dying, and if you go back a hundred years ago, older people, sick people, they were in the home. There weren’t hospitals in that way. There weren’t hospice buildings.

 There weren’t continuing care facilities, which is where, a lot of people who can afford it go. It takes that chapter out of our view, and it 

Dr. Dean: mmhmm 

Steven Petrow: makes it perhaps more comfortable in a certain way, but it really, I think, exhibits the fact that these are themes and topics that are very challenging to most of us,

Dr. Dean: Yeah, for sure. Some of that history around how this shifted had to do with the Industrial Revolution and when hospitals became the place that people became ill and, therefore died in a facility outside of the home. I’m a fellow in thanatology for the [00:14:00] Association of Death Education and Counseling.

And this is, part of our history is understanding that at some point people didn’t die in the home and nobody wants to talk about death and dying. No one is comfortable with it in the same way. Not no one, that’s a blanket statement, but that shift. I think that’s reflected in the difficulty with medical aid in dying.

Because I think I want to also clarify and you’ve probably researched this. as you’ve looked into, MAID. But, it’s not called assisted suicide, like it was referenced, Dr. Kevorkian was doing his thing.

Steven Petrow: Right.

Dr. Dean: The distinction there is really important, and I think our listeners need to hear that, because people like your sister don’t usually want to die, but they’re already dying.

And so this is a choice that’s not about suicide. And I don’t know what you wanna say about that, or your thoughts on that.

Steven Petrow: Well, also, the phrase assisted suicide, says rather explicitly, there is an assistant.

Dr. Dean: Right, exactly. 

Steven Petrow: What a main distinction, as I understand it, is and I’m most familiar with New Jersey in terms of the law, you do not have a medical [00:15:00] professional participating in the provision of the medication or if you’re in Canada, the IV method. You have to be able to ingest this medication, this 

cocktail by yourself, which is what happened. Julie had this wonderful hospice nurse who had to be outside of the house until after she had swallowed the medication and then she’s allowed to come in. So therecould be no question that Julie did this, herself.

This was her choice. And, that is a very important distinction. Words matter so much in this culture, and people on all sides of the political spectrum, use words and language to inflame issues, and so, suicide is often used these days to camouflage what is a very different process, in the same way I’ve heard, Some of those who are opposed to medical aid in dying say that you have to, or the patient has to, the person has to, take a hundred pills. And I thought that initially myself, and I thought, my God, I can’t stand to take three big [00:16:00] vitamins. I don’t know if the equivalent is of a hundred pills, but they’re capsules that are emptied out already. you’re dealing with, a fine powder.

You think about mixing that with a liquid. That is a very different, visual, to understand, just in terms of one’s comfort. And then, having spoken to some of the medical doctors who work in this area, they can do practice sessions with other types of medications.

Sometimes I understand you can do it rectally, but there are ways for doctors who really know what they’re doing to make this as easeful as this can be. Is that your understanding too?

Dr. Dean: Yeah. It definitely is. Yeah. What kind of conversations did you have with Julie as you were trying to navigate your understanding of it?

Steven Petrow: So when I was going through my internal dissonance, I kept that to myself.

I know other members of my family, had the same dissonance- not wanting her to leave us, but I did not want to ever say to her anything other than I support you in what you are [00:17:00] choosing to do. That had long been my, understanding of being her brother, and in this instance, it mattered even moreso. We talked about it amongst ourselves sometimes. We talked about it with friends and in therapy, but, I wanted her to know that, we were all on Team Julie, I was on Team Julie, and, and the end of that was that. Then I, internally came to the place that I needed to be, 

Dr. Dean: mmhm 

Steven Petrow: I think that support mattered to her, and also, she did not waver. . She remained focused on this as first the choice, and then the way to end suffering, 

 her suffering. And I rememberthe night before and our whole family was together. I wanted to say, it’s okay if you change your mind.

Dr. Dean: But I didn’t say that because that just seemed to then possibly open up a door of doubt of some sort. And she was steadfast and, I wanted to follow her in being steadfast, and we did. 

That’s admirable.

Steven Petrow: She always had a great sense of humor about everything. Her friend Michelle [00:18:00] made this key lime pie for dinner for that last night and Julie really wasn’t supposed to eat and really couldn’t eat. But she did have a couple of bites, and she said to me, a sweet tooth doesn’t even die when you’re dying.

She really enjoyed that, those couple of bites, and her humor carried us a good bit of the way, too.

Dr. Dean: Does it still carry you?

Steven Petrow: Yes, I’m known in the family for, and funny bone is not the right way to say it, Here’s how to say it. So at her memorial service, which is about five days after she died. Yeah, I acknowledged early on, I was her brother. She was a lesbian. And then I told this story about how she just loved men in uniform. A passion that I also love. And then, there was, in the sort of carousel of photographs, there was one of her with these two emergency service workers that was probably about a year old, that had come up. So I told that story, then I said, and this is where Julie would say, “Steven, you are so [00:19:00] bad.” And, and I always loved when she said that. I miss when, when she says that. Now, many people in the family say that to me, “Steven, you are so bad.” It’s not something that I plan, but it is something that’s part of, my personality, that if I think it’s gonna ease the situation, I might lean that way.

But I also am careful not to fill up hard moments, confusing moments, painful moments with something that might be a quick hit or something light. So it’s a real balance. Probably during her illness, I learned more about all of that.

Dr. Dean: Learning to tolerate the distress and sit with it uncomfortable versus filling it avoid it? It’s a hard lesson to learn.

Steven Petrow: Yeah. It has been hard. A lot of times somebody within the family and she was married to Maddy. She has these two wonderful girls in their twenties. My brother and his family. We all bring her up in conversation regularly. There’s a lot of storytelling.

There’s a lot of memories. Julie loved [00:20:00] amaryllis and that came from our mother who would give everybody in the family an amaryllis and we’d all watch them grow bright and sparkly and so on. And then Julie started doing that. And then. in the last year or two, many of us in the family were sharing them and so we’ve been posting photographs of our amaryllises as they bloom since Christmas and her friend Michelle, who was the baker of the key lime pie, sent one around today. Glorious red, her husband Tim had taken a mirror and illuminated it so it was just like on fire. And, we all just, have this moment on text of being one My text threads are just filled with Amaryllis photographs.

Dr. Dean: It’s beautiful. Can we go back to, you said that she wanted you to advocate for MAID.

Steven Petrow: She wanted me to be her voice on this. As a journalist, I have to be careful about, not advocating for partisan or political issues. So I don’t describe myself as an advocate, in terms of this. But I feel very strongly that [00:21:00] I am her voice.

Dr. Dean: That makes sense. Thank you for the distinction.

Steven Petrow: My editors would be happy to have heard me and know that I feel that way.

Dr. Dean: Is that difficult to navigate?

 

Steven Petrow: Yes, because, in this very politicized time where perceptions matter as much as realities, I think journalists have to be very careful in their reporting, in being fair, in being equitable, and also not appearing to, lean this way or that way. We have to sign a code of ethics every year, we have to re sign. I can’t go to fundraisers, I can’t do a lot of things. I can’t have a placard in my front yard for a candidate. That is really to instill trust in journalists that they are not beating the bush for this cause or that candidate at a time when there’s just so much distrust anyway.

Dr. Dean: Thank you for clarifying. What do you feel the big messages that you want to share from her voice?

Steven Petrow: Really the big message is MAID, medical aid in dying, should be a choice in [00:22:00] every state for every person who is terminally ill. Yeah, a choice, That’s very different than any kind of requirement or squad which, gets tied up in, the fundamental argument that goes back to a woman’s right to choose, but this is a human being’s right to choose how they will live and how they will die. That’s the number one message. And then the second level message is,around, and Julie and I had seen this as gay people when we were coming out. So I’m, 66 and she would have been 62 next week. So when we were coming out, so many people in the U.

S. did not really know gay and lesbian people. They certainly didn’t know trans people. And so this lack of, familiarity, this lack of understanding, made it much harder for Americans to embrace this unknown, these unknown people, subject to many stereotypes. As time went on, as more people came out, workplace families, more and more people and more and more [00:23:00] families knew someone who was, queer.

And that’s how we saw attitudes change around acceptance. So she really was hoping that part of what I might be able to do, is introduce her to more people after the fact. So that she’s a fully developed human being in the way I try to write about her. Her illness was one part of her life, how she died was one part of her life. Her smile was probably the biggest part of her 

life. Her daughters, her marriage. She was a 360 degree character and that is what I’ve been trying to, portray so, it’s, probably been the most gratifying time for me as a writer because then I hear back from people I don’t know, “Wow, I got to know your sister, I got to see, why she’s special, how we’re all special in ways, and also, she did this, now I know someone who did this.

Now I know a family who did, MAID.”, That’s also part of what she wanted me to communicate.

Dr. Dean: I’m also now aware that most of our conversation has been about talking about how she died.

and that’s not usually how I start [00:24:00] these interviews. Usually I’m really curious about the person that she is. So what do you want to say about her? So that our listeners have a sense of who Julie is.

Steven Petrow: We’ll get to talk a little bit at the beginning

Yeah, a little bit. About, about coming out and that she, One of us is the instigator, the other is the troublemaker, But, she was most proud of being a mom. : a mother to Caroline, a mother to,to Jessica and of being a wife. She and Maddy worked together for 35 years. I think they got married four times, because of, how the laws were, they got married in Canada, I think they got married on a Rosie cruise. They got custody partnered. They were very steadfast in creating the structure for family. About 10 years ago, Julie and Jessie, her eldest, testified, in the New Jersey legislature for same sex marriage. She was an advocate. Jessie’s an advocate. Caroline’s also a journalist, so I’m not going to, put that on her. She really, instilled that value Actually she made a video for the family before she died, probably about nine months before she died

Dr. Dean: hmm.

Steven Petrow: [00:25:00] which we saw on Thanksgiving, which was about five months after she had passed. And that was the first time the family saw it. And it was set up chapter about Maddy, chapter about the girls, chapter about the brothers. And then there was this sort of this standalone chapter about politics and the right to choose and the right.

So that right to choose is, in your reproductive years and the right to choose, in these later years. It’s part of her lasting legacy to our family. So, that’s part of her. And then, so that was Thanksgiving. And then at Christmas, this was another side of her.

So she was always in charge of the Christmas tree and it was a big deal. We had grown up with Christmas trees. Maddy had grown up with menorahs, but they did a Christmas tree, and Julie was always, “This is how you do it, and this is how you take it down.” So the girls were going to decorate the tree for the first time without Julie, and they found a four page single spaced letter from Julie in the Christmas ornaments, detailing how to decorate a Christmas [00:26:00] tree and how to pack up the ornaments

when,the season has come to an end. It was such a surprise to find it. It was so Julie. And she was working on it the day before she died. She’d been working on it for months, but she said, I’ve run out of time. I know you can do the rest by yourselves. She thought about everyone. She was really, such a giving and caring person. At her service, I met a lot of her colleagues and a lot of her friends that I didn’t know. She was the same Julie to all of them, and she’d been in like, she’d worked at Citibank and Raymond James, these sort of buttoned up places. But Julie was Julie there. They all, loved her, they loved her spontaneity, the fact that she would bend rules, not break them, but bend them. So, this was our Julie.

Dr. Dean: Thank you. I also feel like I know her a little bit. I have a sense. Yeah. So how are you doing with your grief?

Steven Petrow: So it’s funny, I hear that question, and I think, oh, Angela’s asking me about my grief, this is my grief, it’s in, I’m holding it [00:27:00] right

it’s this containable thing now describe, which I can’t, and it’s not this containable thing. It’s messy, It surprises me. It goes in waves.

I’ve learned, or I’m trying to learn. not to control it,

Dr. Dean: hmm.

Steven Petrow: but to let it be. And the lesson I’m drawing from is when I had cancer in my twenties, I had a lot of fear. I had fear of, I fear of losing my hair. I had testicular cancer. I had fear of various sexual repercussions. Then I had fear of relapse and recurrence.

And I had fear of, not making it the whole way through. I had a lot of fear. And. I tried to stay very buttoned up about that fear, locking it away, it’s put it in the safe and I’m going to go on with my life and that’s going to be that. That really didn’t work very well for me.

Dr. Dean: Right. 

Of Of course it 

didn’t. 

Steven Petrow: I believe you would call it compartmentalization,

Dr. Dean: Something like that. Yeah.

Steven Petrow: professionals. And, yeah, it could get out of the safe.

And, then it was like even more [00:28:00] powerful.

Dr. Dean: hmm.

Steven Petrow: So I adopted this process of letting it out on a weekly basis. Literally, I gave it a name. I called my fear Max. I was doing volunteer work at Memorial Sloan Kettering when I started this.

And so I talking to other patients who had been diagnosed, also with, testicular cancer. And it was a time where. I felt connected with them and that I could let Max out and do what he needed to do. And then he would go away until the next week when I went there. So I’ve tried to approach grief in the same way. This reminds me that I probably need to give my grief a name because it really did help to refer to,my fear as Max. So, thank you for inadvertently suggesting that to me,

Dr. Dean: Oh, of course, you did all of the work there, but 

you’re welcome. 

Steven Petrow: Well, it was the question.which is to say, it’s impossible to keep at bay all of the time.

So, embrace it. Understand what it is. and this is something that I still struggle with, but I’m learning [00:29:00] that, those feelings of loss, of sadness, of grief, they are manifestations of love,

Dr. Dean: Absolutely. I was just thinking that same thing.

Steven Petrow: And so I try to, I try to feel it that way. if you felt, if I felt nothing,

Dr. Dean: hmm.

Steven Petrow: that would be worrisome.

And when people tell me. not necessarily about a death, but if they’ve broken up with someone, and they’ve been together for a long time, I feel nothing. I worry a little bit because that’s walking a fine line. so, I try to embrace it, which means still though that, it comes at me. An example that comes to mind is about a week or 10 days before Julie died. We were in Manhattan. We stopped at a Chinese restaurant. We picked up Peking duck, one of her favorite dinners. She was hardly eating at this point. She ate, half that Peking duck. I’ve never someone so enjoy a meal. I don’t know, it’s greasy and it’s, it was a beautiful, it was beautiful.

And then, I don’t know, sometime in the fall a friend of mine said, Oh, I’d really like to go to this new restaurant in [00:30:00] Raleigh, Chinese restaurant and we can have Peking duck. Yeah, and with all the best intentions, he did not know this backstory, I went right over the cliff into that grief space, remembering that wonderful sort of last supper together.

So, they’re all, there are a lot of triggers out there too. In that moment I acknowledged it to myself and I said to my friend, here’s why that’s not a good idea for me right now. 

Dr. Dean: mmhmm I’m glad that you were able 

to recognize that and, maintain your space the way that you needed to. I think it’s also important, grief, I think, and maybe this was implied in how I asked the question, but grief is the reaction to loss. So it’s not always. the sadness and all of the negative emotions, just like you were saying before about joy.

You can find joy in grief and that’s a challenging notion.So you’re not having this contained space for it, that makes sense because it’s a whole bunch of other reactions too.

 

Steven Petrow: After she took the medication, it took her, it took her about five hours to pass, actually, which made her a little [00:31:00] bit of an outlier, and basically, it was longer than we had expected, but we were all able to be there, we were all able to talk with her, because they do say that one’s auditory senses are the last to go, and there were moments of beauty in that time.

And moments of, terrible sadness. 

Dr. Dean: mmhhm 

You also had time to think about losing your siblings, right? 

Many of my guests and my audience are younger and that’s not always the case. In fact, this season, that’s definitely not going to be the case. But I wonder what that process was like? You’ve already lost your parents from what I understand. 

Steven Petrow: mmhmm, You know, I had long been wondering myself, would I want a fast death or would I want a slow death? 

Dr. Dean: Mmhmm 

Steven Petrow: Julie was ill for five and a half years. Most of that time, she had a very good quality of life.Most of that time, she knew that it would not end well, as did most of us. It did allow us to [00:32:00] live in a much more intentional way with each other, to say things that you might normally put off for another time.to talk through some things that, that needed to be talked through. She and Maddy did all of the legal financial planning themselves, but it was really the emotional work that, we had time to do. And we had time to want to do a call out to this. There’s an organization called Clearity, the Clearity Foundation based in San Diego.

They provide a number of services to people suffering from ovarian cancer and their families. Julie benefited from their educational, director who would help her interpret different studies and clinical trials and so on. I, had a, therapist who I’ve worked with, probably for three or four years now – all these services provided at no cost to individuals.

 So that was just a very helpful,part of this in a way that we could use the time in more meaningful ways. [00:33:00] And,the therapist that I worked with, Whitney, she had done a lot of this work with other people. So she knew what that road looked like.

Not that anybody’s experience is the same. Not that she expected me to, drive in the same way. But she had an understanding of that landscape that helped me to navigate it, a little more. Without as much, trepidation, I’d say. I think I might have wandered off of a question, though.

Dr. Dean: That’s okay. No, I really, I think that’s all valuable information as well. In fact, I’ll put a link to Clearity in the show notes. It’s definitely a worthy resource. 

This is a topic you mentioned at the very top, I wrote last week for Maria Shriver’s, Sunday paper about cancer etiquette. And this is in regards, first of all, to Catherine, Princess of Wales, whose privacy was completely exploited by just about everybody, who had a soapbox and was fueled by our hunger to know, where is she?

Steven Petrow: Where is she? What’s going on? So this [00:34:00] piece talks about privacy as really the most important aspect of cancer etiquette. Respecting someone’s wishes, and if someone confides in you that they’re ill, that does not mean you have any legitimacy to tell anybody else,

Dr. Dean: Mm hmm.

Steven Petrow: It is a time when someone who is ill with cancer likely feels as though they don’t have any control over their circumstances and what is the one thing that we might be able to control?

Well, that’s our story, our narrative. How we divulge it. So, I really felt that what happened, to the princess was egregious and, and was, a teaching point, for the us.

 Okay, so this is a way I hope that I’m going to be somewhat humorous. Two months before Julie died, a good friend of hers that she grew up with sent a condolence letter to the family. you know, beautiful stationery, beautiful script, poignant memories. Julie’s reading this out loud, laughing, touched, oh, this is, I don’t [00:35:00] remember the person’s name, but I’m not going to say it anyway, but this is what so and so really thought of me.

So it was a goof, and I have been saying, before you send a sympathy note, please make sure your timing is right, but in, in a sense, Julie was also, very pleased, to read this. And,so,and some of the other things I talked about in that piece were the importance of listening.and, as we’ve talked a little bit, we’re not such great listeners these days, We want to hear ourselves talk. We want to be around people who believe what we believe. Someone who is going through a cancer journey is going through their own thing. And, even those of us who have had cancer, we can guess a little bit, but it’s still not the same.

So listening is a, is also a really important part of that.

Dr. Dean: Yeah. Thank you for that reminder. Actually, when I read that piece and then you’re an expert on civility, as I recall.

Steven Petrow: I am considered that.

Dr. Dean: Yes.I was thinking [00:36:00] actually about the two things in my head together this morning, knowing that we were going to talk today. I was thinking, so I have this, this line of cards that are really snarky about stupid things people say, in grief.

Steven Petrow: I would 

agree, yeah. 

Dr. Dean: but 

mainly because people say things, oftentimes they don’t mean harm by them, but they say things that are inappropriate or startling. And so I was thinking, is there a way to create a grief etiquette in the same way that we’re moving towards etiquette with chronic illness? 

 I think very much so. And I’ve been doing it in sort of bits and pieces. but it’s something that I’ve thought about doing in a more focused way. I’m sure. Well, will you put, in the show notes, will you put a link to the card yeah, absolutely. I’ll actually email that to you today but yeah. 

Steven Petrow: okay. because most of the missteps in this category probably, 98 percent unintentional 

Dr. Dean: Mm 

Steven Petrow: know, I’m sure you know, it is [00:37:00] hard, it can be very hard to know what to do or what to say. And I certainly have said stupid things. 

Dr. Dean: hmm. We all have. 

Steven Petrow: I have a friend who’s going through the process of right now of being diagnosed, and part of me wants to say, everything’s going to be alright. 

Dr. Dean: hmm. 

Steven Petrow: Well, 

I don’t know that.

Dr. Dean: Right.

She doesn’t know that. She’s afraid now. That’s the place where I need to try to join the conversation.Mm

Steven Petrow: andwith all behaviors, Especially, if we’re talking about etiquette or manners, there’s a lot of follow the leader. So if we can establish, better ways to convey ourselves, and whether that is listening, whether that is treating someone who is ill the same as we treated them before. And, seen, people shout at someone who has cancer, not because they have a hearing loss issue, just because this is what we start doing when we think someone is different,

Dr. Dean: Mm

Steven Petrow: treating them the same. And,we copy each other a lot.

that’s what this is about. So establishing more norms around this is good for all of us.[00:38:00] 

Dr. Dean: Yeah, I agree.you just reminded me of a memory of when my grandmother was dying and people shouting at her in the hospital because she didn’t speak English. Yeah, and I think listening is key. It would solve so many of the world’s problems if we could just listen 

but if we start to learn to listen and see that the person, whether they’re grieving or they have cancer or it’s, Something we don’t agree with politically or otherwise, and see the person as a human being, I think we’ll start to say fewer of those inappropriate things.

Steven Petrow: I think so. I hope so. Politics seems the hardest part of this, but it bleeds into everything else. And, to go back to medical aid in dying, that’s become very politicized as well. It’s become a red and a blue issue, which really upsets me, that it should be politicized in that way, that it should be binary, we can’t hear our loved ones and allow them to do what they want to do.

Dr. Dean: I’m curious [00:39:00] about your statement there that it’s become a red and blue issue because the literature from the death and dying world says that is not true. 

Steven Petrow: Well, the reason I say that is if you look at the 10 states plus D. C.,

Dr. Dean: Okay,

Steven Petrow: I think they’re all blue.

Dr. Dean: ah Fair 

 That makes sense. 

Steven Petrow: It 

needs to go through state legislatures and, breaks down that way.

Dr. Dean: That makes sense. Okay. So the articles that I’ve read are based on probably quantitative and qualitative surveys that people are answering. So

Steven Petrow: It’s so,

Dr. Dean: you know what, so both can be true, which is I have a giant ampersand in my office because I often remind people that multiple things can be true at the same time.

So thank you for the reminder.

Steven Petrow: well, thank you for the confirmation.

Dr. Dean: I think one other point about medical aid in dying that might be significant to realize is It’s along those lines of why it’s called that, but also another reason that it should be an option [00:40:00] is the population with the second highest suicide rate are the elderly, and a lot of them don’t have the option for MAID.

So, they are engaging in things that end up being rather violent ways to die, because they’re choosing suicide. They don’t have a better option. 

Steven Petrow: To your point, I had, an extended family member who had terminal cancer in a state where MAID is not legal, and, he had, he used a gun, youand it’s horrible. It’s horrible anyway, but that was horrible. But, you remind me here, Julie gave me talking points, so that’s great. 

But 

Dr. Dean: She didn’t leave you a detailed list.

Steven Petrow: pretty much,

Dr. Dean: Okay. Mm hmm. 

Steven Petrow: She did, she noted that she was white, they had the income to afford 900 dollars for this medication that was going to be, reimbursed by any insurance plan, and that, and then she had access to resources. [00:41:00] Most people don’t. And so when you look at the data about, who goes through the process of qualifying for MAID, It is more educated people.

It is people of higher economic income levels, white people, There’s a real, disparity of access and utility there. and that’s not fair. That’s not equitable.

Dr. Dean: Yeah, it sounds like an opportunity.

I’m attending this conference next week and I’m really curious to see some sessions on this very subject. I know that you have mentioned telling stories about Julie as being important way to other people to know her. Do you have some favorite stories or memories that you want to share?

Steven Petrow: So, I’m having sensory overload as we’re here. yeah, I’ve had many qualms about Facebook, but one of the things that I’ve come to appreciate in the past year, are Facebook 

memories, 

Dr. Dean: mm hmm 

Steven Petrow: which will bring up, posts or photographs, on a particular [00:42:00] date.and especially of Julie and me and our, family, One that I know that is coming up.

So her birthday is April 15th, which will probably be after this is posted, 

Yeah, okay. So, as of the day, as we’re talking, it’s April 5th. So, anyway, I that’s coming up, and so,

Dr. Dean: hmm.

Steven Petrow: This was the week that she decided to end treatment, and her doctor said at the time, when she asked him, how long will I have, and he said, two to three months. And, at that point, Julie said, I want a really big birthday party next week. and our family loves having parties and our family loves having speeches. We’ve done that all of our lives.but this was hard to hold these, the celebration and the finality together, but we did, and we even had two different cakes., One to represent sort of,each of the themes going on. What I think was especially beautiful, was anyone who wanted [00:43:00] to speak about Julie got to do that there with her there with all of us with each other.I think that was,that was really powerful to friends and family. And then, her friend Val made this pinata that said, fuck cancer and, Julie, Maddy, and the girls went first in whacking this and breaking it, but it was like a great way to get out all of that anger. as

well and destroy the pinata. at the same time doing, something that’s a party thing, a birthday thing.So I, so I hold that picture, this will remind me of that picture.Mary Frances O’Connor has written this really beautiful book about, grieving.

I think it’s called The Grieving Brain.

It is. Yeah. It’s a great book. And,what she talks about there, or what I took away from that book is, so, I think about her birthday, I think about the holidays we had, Julie was always front [00:44:00] and center in those pictures, whether they were mental or, literally photographs.

So then you come around and they’re not there. And that absence is so strong, it’s so powerful, especially in the beginning times. Because you’re having to almost reorient, remap your brain as to, What does your family look like? What does your family look like without your sister in it? Or from my niece’s point of view, their mother, or Maddy’s point of view, her wife.

And, O’Connor has looked at scans and so on and has come up with some really 

fascinating stuff about what the brain goes through.

Dr. Dean: Yeah.

It is a good read. 

How did you navigate what that looks like differently now with whatever you’re comfortable saying?

Steven Petrow: It was before the holidays last year that I did read the book. It was still, well, it was still very hard. on the other hand, we talked a lot about Julie at the table., The year before, Julie had been giving [00:45:00] really all of her cooking instructions to Jessie for the turkey, for the roast beef, in the same way that she did the Christmas tree.

and so Jessie was going, the, we were, we were really enjoying remembering, well, now is when, Mom would put the tinfoil on the turkey that it doesn’t, it doesn’t get, too brown or, burn. And so, she was, very present in those ways. And,there was a time right after she died, I thought, am I gonna laugh again? That’s, and I was afraid I wasn’t. And we, we all said after, both after Thanksgiving and after Christmas, was there was a lot of laughing, there was a lot of love, you know.yes,you will on your own time. You might not with everyone else.Laughter is also a way to express loss and love.

Dr. Dean: Absolutely.

Steven Petrow: So it did not feel like, well, we shouldn’t laugh. 

Dr. Dean: Thank

 

Steven Petrow: There’s something I want to put on the [00:46:00] table that, we may be getting to. I don’t want to have

Dr. Dean: no. Go ahead.

Steven Petrow: and it’s a topic of siblings. so yes, I have heard from many people, I’m so glad to have gotten to know Julie better. I’m so glad to have gotten to know your sister. and then I have, it’s been interesting because I knew Julie and I, and, Julie, Jay, and I, we had a special sibling relationship. And, And so then I’ve heard from other, folks, other friends, I’m envious of the closeness that you had.

 I don’t understand it, the closeness that you had. we don’t talk about sibling relationships in the same way that we talk about parental child relationships or spousal relationships. And this is something I’m just coming with. To understand myself and, NPR is doing a series this week on siblings,

Dr. Dean: Oh,

Steven Petrow: which I highly 

recommend to,

Dr. Dean: listen. Yeah.

Steven Petrow: yeah, and, there’s a whole new science of siblings that they’re playing around with, but real theme [00:47:00] is siblings matter more than we, we’ve understood. 

Dr. Dean: Yes. 

Steven Petrow: And, um and even when you don’t have a good sibling relationship, the bonds that exist are unique.

Dr. Dean: Well, it’s very formative and partly how this whole organization that I’ve founded started is sibling loss itself is misunderstood largely in part because the sibling relationship is misunderstood, just like you said. But if you think about the sibling relationship, the duration of your sibling relationship is intended to be approximately, ages and all of those things.

Steven Petrow: Mm

Dr. Dean: change this, but the statistics say 80 to a hundred percent of your lifetime, you will have a sibling. So for Julie, she had siblings a hundred percent of her lifetime. 

and we’re supposed to outlive our, parents and all of those things. And so the sibling relationship, who do you learn the social skills from and how to interact with the world? Surely your parents, but more so [00:48:00] your siblings. There’s that peer relationship and they’re there for everything. So of course, it’s not understood in the same way.

In some ways it’s more powerful, right?

Steven Petrow: That’s been my experience, and we also carry each other’s secrets. 

Dr. Dean: Which you get to carry for longer.

Steven Petrow: right, and I don’t know where mine go.

Dr. Dean: There’s the humor. 

Steven Petrow: Maybe time to get past secrets. 

Those are fun. but yeah, so it’s, territory that I’m, grappling with,and realizing how special siblings are and how in, our case, really how special our triad relationship, has been. 

Dr. Dean: Well, and to your earlier point, I think it’s not always a close relationship, but it’s still always an impactful one. So I’ve talked to siblings who are estranged from their siblings and maybe lost their sibling, or who are just estranged from their siblings, depending on where I’m meeting them. or they’re [00:49:00] not close or they are.

But the key thread is that in some ways it forms our identity and who we are in our relationships and what matters most. 

Steven Petrow: mm hmm. 

Dr. Dean: I’m definitely going to check out the NPR series. Thank you for letting me 

Steven Petrow: it’s still, started a couple of days ago.

Dr. Dean: Is there anything else that we didn’t talk about that you wanted to dive into? 

Steven Petrow: I think you’ve done a good job.

Dr. Dean: Oh, well, thank you from the professional interviewer. I’ll take that.

Steven Petrow: Yes, no.

Dr. Dean: hmm.

Steven Petrow: I really, appreciate the opportunity to talk with you and asess some of my own feelings. I was looking forward and having dread at the same time.

Dr. Dean: I understand that. Yeah. Well, thank you for coming on and sharing and being vulnerable with it all. Thank you for sharing, Julie. I have a sense of who she is. 

Steven Petrow: You’re very welcome. is Thank you For 

doing what you’re doing, too.

Dr. Dean: Oh, thanks. 

Steven Petrow: Thank you so much for listening. Our theme song was written by Joe Mylward and Brian Dean and was performed by Fuji Sounds (feat. MYLWD.). If you would like more information on The Broken Pack™, [00:50:00] go to our website, thebrokenpack. com. Be sure to sign up for our newsletter, Wild Grief™, and to learn about opportunities and receive exclusive information and content, as well as grieving tips for subscribers.

Dr. Dean: Information on that, our social media and on our guest can be found in the show notes wherever you get your podcasts. Please like, follow, rate, subscribe, and share. Thanks again. 

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More pictures of Steven & Julie