When Liza Marshall was diagnosed with breast cancer, she had the seemingly perfect partner: Her husband, John Marshall, is a doctor and expert in gastrointestinal cancer. But even with his medical knowledge and connections, her cancer journey was a scary, stressful and sometimes frantic experience. In their co-memoir “Off Our Chests,” they offer readers a real, inside look into the cancer journey from a patient, caregiver and clinician perspective.
We talked with:
- Liza Marshall is a writer and community leader and volunteer. She graduated from Duke University and the University of Virginia School of Law. She helped to found a cancer support organization, Hope Connections for Cancer Support in Bethesda, Maryland. She continues to serve in leadership roles with Hope Connections, her church, and in her community. In 2006 when she was forty-three years old, she was diagnosed with triple-negative breast cancer, the most deadly form of breast cancer. In 2021 she and her husband published a book about their experiences with Liza’s cancer and how it impacted their lives and their family.
- John Marshall, M.D., received his training at Duke University, the University of Louisville, and Georgetown University. Dr. Marshall is an internationally recognized expert in new drug development for gastrointestinal (GI) cancer. In 2009, he established the Otto J. Ruesch Center for the Cure of GI Cancers, an organization solely focused on improving the lives of GI cancer patients through innovative research, personalized medicine and focused advocacy. In 2015, Dr. Marshall both established and directed the Precision Oncology Alliance, a national alliance established to study the impact of molecular profiling on cancer research, value and outcomes. He currently is serving as the Oncology CMO for Indivumed, creating a global precision medicine research network.
We talked about:
In this episode, Dr. Millstine and her guests discuss:
- Screening is important, but not perfect. Liza did all the right things: Annual mammograms, regular health visits and even monthly breast self-exams. But one day, she realized one breast was larger than the other. Diligent screening is important, but it doesn’t protect you from bad outcomes — and it doesn’t always catch cancer. Along with screening, it’s important to trust your intuition when it feels like something is off.
- The frantic search for a cure. After her diagnosis, Liza and John found themselves acting “irrationally” — asking if she could try a drug that hadn’t been proven for her type of cancer. Fear can make people — even very informed patients like John and Lisa — willing to try almost anything to cure their cancer or improve their chances of survival. It’s an understandable impulse, and something that patients can hopefully openly discuss with their healthcare team in order to sift through the evidence together.
- Navigating cancer as a couple: The real deal. John and Liza’s book doesn’t hide the frustrations and tensions that can occur in a couple during the stress of cancer treatment. Importantly, it also touches on how cancer affects your sex life. By sharing these personal details, they hope to give readers a better idea of what it’s realistically like to navigate cancer — as both a patient and a caregiver.
Can’t get enough?
- Purchase “Off Our Chests: A Candid Tour Through the World of Cancer.”
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- If you’ve got ideas or book suggestions, email us at firstname.lastname@example.org.
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Read the transcript:
Dr. Denise Millstine: Welcome to the “Read. Talk. Grow.” podcast, where we explore women’s health topics through books. In the same way that books can transport us to a different time, place or culture, “Read. Talk. Grow.” demonstrates how books can also give a new appreciation for health experiences and provide a platform from which women’s health can be discussed. At “Read, Talk, Grow.,” we use books to learn about health conditions in the hopes that we can all lead happier, healthier lives.
I’m your host, Dr. Denise Millstine. I’m an assistant professor of medicine at Mayo Clinic in Arizona, where I practice women’s health, internal medicine and integrative medicine. I am always reading and I love discussing books with my patients, my professional colleagues, and now with you.
Today, I am honored to have my guests with me for the episode. It is a husband/wife powerhouse duo who co-wrote a book “Off Our Chests” about breast cancer from the patient, the caregiver, and the clinician’s perspective.
I’ll start with Liza Marshall, who’s a writer and community leader and volunteer. She graduated from Duke University and the University of Virginia Law School. She practiced communications law until the mid 2000s, when with her two children and her husband, who was rapidly becoming an internationally recognized expert in oncology, she retired from her practice to manage her family and to focus on her volunteer work. Soon after, she helped to found a cancer support organization, Hope Connections for Cancer Support in Bethesda, Maryland, and she continues to serve in leadership roles for that organization, as well as her church and her community.
In 2006, Liza was diagnosed at age 43 with triple negative breast cancer, which is the most deadly form of breast cancer, and in 2021, she and her husband co-wrote “Off Our Chests,” which we are going to explore in detail today. Her writings have been published in several other platforms as well.
Dr. John Marshall also received his training at Duke University, then at the University of Louisville and Georgetown University. He’s an internationally recognized expert in new drug development for gastrointestinal (GI) cancers and he’s served as an investigator, the principal investigator for over 100 clinical trials, which for those of you not in academic medicine, is remarkable. He has an interest in many areas of cancer research, and his primary focus is on the use of precision medicine in treating cancer. He has become an outspoken advocate for GI cancer patients, and he’ll tell us about his opinion about breast cancer research and funding, I’m sure.
He’s spoken at many, many conferences and has held many leadership positions. In 2020, he and his wife published “Off Our Chests: A Candid Tour Through the World Of Cancer.” Welcome, Liza and John.
Liza Marshall: Thank you. Good to be here.
Dr. John Marshall: We are.
Dr. Denise Millstine: So you came on to my radar because you actually came and gave a Grand Rounds at Mayo Clinic. Grand Rounds is a highly respected, weekly presentation where the best of the best come and talk about a topic, and I was thrilled to see that this was based on your book. Tell us a little bit about the Grand Rounds experience and how you connected to that.
Dr. John Marshall: Well, it’s always good to know people, and since you understand, and we, of course have very many good friends and colleagues with Mayo Clinic over the years, and they were gracious to host us. But I actually think on some level, we represented a different sort of time; the pandemic, the stress on healthcare professionals, the need to sort of reflect on our lives and the jobs that we do, the added stress of the pandemic, the difficult nature of what we do in general.
We’ve been well-received by many academic institutions this past year. Sort of a different discussion, an openness about our world, and I think hearing also from the patient and the caregiver, if you will, perspective is something that we don’t usually do in Grand Rounds. On some level, it was kind of a refreshing break for most folks.
Dr. Denise Millstine: I would agree. We’re accustomed to hearing about academic studies and presentation of science and also how to change our clinical practice, and this was very refreshing and really stuck with me. Let’s talk about your book and let’s go to the beginning, which is always a good place to start. First, I want to comment on how honest and vulnerable you both are in your voice in the book.
You don’t sugarcoat the things that are hard and the things that you could imagine somebody might want to write a little bit differently. But Liza, let’s talk about when your friend Holly was diagnosed with breast cancer and that experience.
Liza Marshall: The parent of a person in my son’s class was diagnosed at 46. I mean, she walked into school one day and said I’ve got breast cancer, which is I think, sadly, the way we all kind of say it, one is so shocked you just blurt out. She was the president of the PTL, she worked for a U.S. senator who had been in the Senate for a long time, very well respected.
She ran his whole office. She ran everything for everybody. We watched her over the year continue to do all this and yet dwindle. She was dead within a year, and one of the things that I found most shocking is John was helping to guide since he was in the cancer world, and she asked him on the phone one day, “Am I going to live to see another Christmas with my children?” He’s like, “Oh, yeah.” I mean both to be encouraging, but also because this doesn’t normally go this way, and she didn’t.
It was just so devastating for all of us to be so close to this and see somebody go from being vibrant and alive and involved in everything to no longer with us. That was really my close-up view of breast cancer.
Dr. John Marshall: I’m wrong a lot. I didn’t want to be wrong on this one. That was not good at all.
Dr. Denise Millstine: Liza, you made a flippant comment, “I guess I’m the only one who’s not in this club” because several of the other women in the community said, “Oh, I’ve had breast cancer.” Little did you know that shortly thereafter you would be navigating the world of breast cancer.
So we have encouraged women to do self-breast exams for years, even though the guidelines don’t necessarily support it. One of the wisest physicians that I have had the pleasure to work with says that every month she would look in her mirror and she’d say, “Okay, girls, tell me what you have to tell me.” But in discovering your cancer John saw something that didn’t seem quite right from the corner of his eye, and you had a sense that things were changing and something was just not quite right.
Liza Marshall: Right. I was very diligent about doing my monthly breast exams. I also was getting my annual mammogram and going to my doctor, so I did all of the things that I thought were right, but got up one day and just looked in the mirror and realized that one of my breasts, the right breast, was larger than the left one all of a sudden and looked swollen.
It didn’t look painful or red. It just was bigger. At the same time John noticed this sort of pulling of the breast and I was already in with a breast surgeon because I’d had a fibroadenoma. I actually had had a lump earlier that turned out to be benign, and so I called her, got on her list and was in and really because I had gone through it before, even though it was a different presentation, maybe because it was a different presentation, I really wasn’t that worried about it.
I think John was more worried than I was.
Dr. John Marshall: We are so certain in our healthcare world that if you do the right things, do your screening and all of those things, that things will come out better. Right? And what we keep forgetting is that there’s a lot of what we do that’s not based on perfect science and certainly not applicable to every kind of cancer, every kind of patient and in fact, the kind of cancer Liza had, triple negative breast cancer, doesn’t really show up on mammograms, and so you go in reassure that your mammogram’s okay, when in fact, you’ve got this evil thing lurking.
That’s exactly what happened with Liza, her breast just swelled up. It was pulling, and those in the medical community know when that’s true it means the skin is involved in and that’s what we call inflammatory breast cancer. It’s a terrible thing. It’s a terrible prognosis when it happens that quickly. But all of her tests were negative. In fact, even when it came time to do the biopsy, it was just let’s aim there, because that seems right, not that there was some spot there.
For the non-medical people, even for the medical people, we need to remember the imperfections of what we do. It is an art, not a science; healthcare and medicine, and recognizing where we fall short.
Dr. Denise Millstine: I would layer on to that in my work in integrative medicine, our intuition and our innate ability to be connected to what’s going on in our body, and even when we fall off of algorithms really advocating when you have that sense that something is not quite right. I also want to back up and just comment on fibroadenoma, which is a benign breast tumor that doesn’t turn into cancer.
So the fact that you had that before made you familiar with the process, but didn’t put you at risk for developing breast cancer just in case some of our listeners have also been diagnosed with fibroadenoma. Well, so here comes clinical trial number one in your care. Tell us a bit about discovering the pathology.
Liza Marshall: As part of doing my biopsy, I signed a consent form for taking some tissue that another doctor was taking. She was banking it for further studies later on.
Dr. John Marshall: In Mayo Clinic actually, for some time.
Liza Marshall: Yes. I just left Mayo Clinic, but I was at Georgetown at the time as was she and I had this biopsy. It was a Thursday I think, and Monday morning John and I were talking on the phone and he was going through his pile of papers and came across one that had my name on it and said, breast cancer. John was, I think, flabbergasted and confused by that because he was not involved in my care in any way, and that was not a normal process to send the spouse who happened to be a doctor in the hospital a copy of the pathology report.
But the pathology had come out of this biobanking study. I think it had not yet been processed actually for my regular visit, and so Dr. Lou, who was the doctor at the time of the study, received the report almost simultaneously and came down the hall realizing that John had been incorrectly copied on it and might be a bit shocked by this news, not knowing that I was also on the phone at the same time.
Dr. John Marshall: We in health care, we hate giving bad news. It is something I mean, patients may not recognize this, but when we’re opening your reports or your scan or your labs, we are also sort of a little tense to know what we’re going to find. When we find bad news, particularly dramatic bad news, we have to figure out how we are going to tell the person, when we are going to tell them. Emotionally, ourselves, prepare to tell the person.
Now with portals and things patients often know before we do, and so in some ways, this was kind of an early portal experience because I was just on the phone with Liza doing our morning check in who was going to pick up the kids, kind of thing, and there was her report, and I hate giving people bad news, yet I got stuck with the one saying, “Oh, Liza, you have cancer, which she thought was very funny.
I am very funny just to know that, but this was not a funny moment, and fortunately, Dr. Lou sort of got the fax. Remember when we used to live off of faxes, the same time I did and came into my office while I was on the phone with Liza, took the phone away from me and then took over at that moment.
Dr. Denise Millstine: You are a cancer specialist. You are not a breast cancer specialist. You are a GI cancer specialist, which is hopefully a topic for another future episode. But you’d been saying some things about the breast cancer community up until this point in your professional role.
Dr. John Marshall: Anyone who would listen. In fact, I’ve been writing about it. I grew up in a cancer center that was very famous for breast cancer research. I was surrounded by breast cancer mentors and I was the GI cancer person, and I wanted to do new drug development, as you said in my introduction, and that’s where you needed new drugs because, frankly, breast cancer already had all the drugs and 10 times more research funding for breast cancer than all of the other cancers combined.
When I looked at that, I was angry, honestly. I was jealous, and I was watching lots and lots of patients with very common cancers dying. No one seemed to care. When Olivia Newton-John dies of breast cancer it’s a major story on all the Twitter feeds, but we only recently have gotten awareness around GI cancers and colorectal cancers, etc. through this advocacy.
Anyway, the point being is I just felt like this sort of stepchild under the stairs and I was angry about their success, jealous of their success, and just simply tried to point it out to others that we need to balance the playing field. So the retribution, of course, the breast cancer gods taught me a lesson and I don’t do that. They’ll teach me a good lesson.
Liza Marshall: Well, I think actually in many ways I think it has affirmed, I mean having gone through, we are both incredibly grateful to the breast cancer research movement and advocacy. Had I been diagnosed in 1970, I would have had a vastly different experience, so we are both very grateful to them, but also the breast cancer patient and many cancer centers is the one who gets the robe and everybody’s wearing a pink ribbon.
I went to see my OB-GYN the other day and she was wearing a pink ribbon and I thought, well, she must diagnose gynecological cancers. It is so omnipresent. We do seem to forget about the other cancers; that there are lots of people suffering other cancers out there who also need research and advocacy and recognition and a warm robe.
Dr. John Marshall: But the point is, that it works. The strategy of funding and having access draws the researchers, draws the patients to participate in clinical trials, creates a culture of success. And so now 90% of all breast cancer patients, all stages make it five years or more.
So Hollywood’s was the exception, if you will, to what is normal out there for most breast cancer patients nowadays. We just want to make sure that all the different patients with the different kinds of cancers have that same kind of backing, same kind of support and opportunity to advance the ball, and we’ve tried.
Dr. Denise Millstine: From your book, it sounds like as soon as the diagnosis was revealed, you got on to this fast moving train for treatment, testing and you made the comment that your outcome would have been different if you were diagnosed with this cancer in 1970. But I think one could argue your outcome might have been different even if you were diagnosed several years before because you were on a treatment path and then with your connections to the community, a very flippant, brief remark from a breast cancer expert changed your course and changed your treatment.
Liza Marshall: Somebody asked me the other day what I thought actually cured me, and the answer is I don’t know. The surgery may have been all I needed and all the rest of it was just extra caution. But yes, one of John’s former bosses, Mark Lippman, who was the head of the Lombardi Cancer Center and quite the world’s expert on breast cancer…
Dr. John Marshall: Just asked him.
Liza Marshall: Just out of the blue, John was not soliciting opinions from people outside of the cancer center, but he had done an interview online, and Mark, I guess, heard it and just sent John an email that said; “Your wife needs a platinum.” With that we went from being rational people to being irrational people, which was a real learning experience.
In retrospect it’s very easy to criticize patients who come in with the reams of paper of every study, some of which are not very well reputed studies and yet there was evidence that platinum drugs were very beneficial for metastatic triple negative breast cancer, and they were being used in that. As far as we knew, I did not have metastatic cancer. But the fact that that triple negative seemed to respond to platinum drugs and we were very afraid.
Dr. John Marshall: But you think about your area of integrative medicine, it’s very common for patients and their families to bring in something they found online or something. We always joke that the crazy uncle sent, that they should consider this, and increasingly it is in the space of, broadly speaking, integrative medicine and the impact. I’m not trained in that.I mean, I’m very interested in it and we are studying it, but I can’t tell you why this one versus that one and then the like. So there’s a lot of inside my head, eye-rolling going on when patients bring in these things because like, I don’t know which one of these to pick, and the patient themselves don’t understand that in the 22 patients I saw that day, I saw 23 different ideas of what they should be doing to try and cure their cancer, so for us to have lived on this, “You need to try this chemo drug that’s not been used in this space” was irrational. But it speaks to the sort of anxiety and fear that you’ll do anything you want. Even the most informed will do anything they can possibly do to improve their chances of being cured.
Liza Marshall: At least what they believe will improve their chances. I didn’t think about the long-term effects of that either, and I sort of tossed that over to the doctor to worry about. I just saw her recently and she was saying to me, that’s what was so hard, was that I had been on a clinical trial that had given me extra doses already.
So my body was bone marrow and all sorts of things were pretty beaten up, and then to throw in this drug, which is quite toxic and was really hard on her and she with great aplomb, I mean, I did not know that at the time, she went off and figured it out and worked us through it. But it was sort of an unfair thing to throw at her and then to expect her just to incorporate it in as if we knew more than she did about it, which we didn’t.
Dr. John Marshall: And we put her in a position of not really being able to wave it off because I’m her boss. I was her boss at the time. I was the division chief, and this recommendation came from a world’s authority. In a way, even though she pretty much didn’t want to do it, she did it because of those pressures. I think that did it, as you say, with great grace.
Dr. Denise Millstine: I just want to comment on the integrative medicine, because it is true that people come out of the woodwork and suggest things that are hopefully well intentioned, but usually ill informed, and I liked how you summarized what I often will say in my integrative medicine consults with people who’ve been diagnosed with breast cancer, which is that the science supports that you have to move, you have to keep exercising to the best of your ability, recognizing that will change as your therapy fluctuates and also the Mediterranean diet.
So eat real food and the rest is pretty much debatable, and we can navigate the science around it, but if people are listening and want to take away the things that they can do, I would say no matter what cancer you’ve been diagnosed with, moving your body is critically important and changes outcomes. So I got on to my integrative medicine soapbox, but I’m just thrilled, and one reason I like to talk about books like yours is that as soon as I started this book, it just carried me straight through.
I love that you created something so readable for patients that I think every person experiencing breast cancer, whether they have it themselves or they have a friend or they’re a caregiver, can learn something. Even physicians. A patient I saw this week was going through chemotherapy and she was talking about her nausea. I want to hear your little battle there that went back and forth with the nausea that was huge for Liza and dismissible to John. But also in your case, Liza, the nausea medication, I think you said was $600. My patient’s copay for the nausea medication in 2022, $6000. Her co-pay. So talk to us a little bit about what it is to have symptoms important to the patient, but the care team maybe doesn’t value it as much. Then let’s talk about the cost of care.
Liza Marshall: After my first round of chemo, I had some nausea and I had been given the sort of, I guess, the baseline things, which is what you would start out with. You don’t know how much nausea people are going to have, and so no point in throwing in and pulling all the guns out right away. I think after my second round, the doctor called me and said, “How did you feel?”
I was like, “Well, you know, I definitely had nausea. But I was still getting out and around, but I was a little afraid to get too far from the house in case, you know, it got worse.” And she said: “Well, we can add another drug,” which was at that time with a drug called Emend.
I was on, I guess, basically the generic anti-nausea drug, and this was a brand name that, as you say, costs something like the difference between $6 a dose and $600 a dose. So a very significant difference in cost.
But the cost to me was not that because my insurance was covering it. John preached for many years about the value of medications, and if we had to pay for them ourselves, would we make the same calculation about the in this case, how much knowledge I had and what I wasn’t able to do, and was it worth paying $600. But I didn’t have to make that calculation.
Dr. John Marshall: I like to poke the bear. So I poke breast cancer, then I poke the cost of cancer care. So I said something like, “You weren’t even sick, you didn’t even throw up!” Which was a terrible human thing to have done to my wife. I can’t imagine a normal caregiver making that remark.
Whatever we can give you is the right answer, right? If it’ll help, let’s do it. Whereas I was sort of stuck in my costs of cancer care, feeling guilty about now participating in this consumption culture. We need to understand there’s a big debate going on right now in Washington about the cost of cancer care and should we negotiate drug price.
It’s taken us years to get to the place where we can even talk about it on Capitol Hill and begin to make legislation, because it’s been this feeding frenzy of rising costs and cancer has been the real standout here. Remember, this was many years ago. So this has been going on a long time, and to your patient’s point, it’s only gotten worse. We’ve just kept ramping the amount of how much things cost. What is their value and can we judge it and should we provide that for everybody? We were in a discussion the other night at a nice dinner where the head of our cancer center was talking about how the United States healthcare system is incredible at the extreme, at the high-end extreme. Best in the world.
But when you talk about the middle, we’re not that good. Average care, we’re not that good. So Liza was getting outstanding care where we really shine, but we have to decide if we can afford it. Anyway, it taught me a lot of lessons. It taught me not to be so cheap, to take care of my patients.
Was I underserving my patients because of this feeling that we’re just spending too much money and is it really worth it? Who am I to judge on the individual level? We can talk about it as a nation, as a society, but as an individual level, I should be providing the best options for my patients, so it’s one of the many ways that my licensed experience changed my practice.
Liza Marshall: But I think it’s important to note that those conversations are very important. Maybe not right in the moment, but they do affect all of us and they do affect everybody’s care. When you give people one thing, you’re going to have to take away something else, and so those discussions are not unimportant.
Dr. Denise Millstine: I also think the focus on outcomes can be misleading. So if we’re thinking about survival in terms of days or years or months, if we’re thinking about the outcome of preventing cancer recurrence, we also need to think about how important symptom management is.
So whether you are nauseous or not can be sometimes dismissed because it seems like, well, that’s the price you have to pay, but then if we have tools to assist with that, not to dismiss that automatically because we’re so focused on the cancer outcomes.
Liza Marshall: Well, I think the quantity versus quality is the day-by-day assessment about what is worth doing and what isn’t worth doing.
Dr. John Marshall: Liza is always bristled a bit about this language. This cancer language of fighting and battle. When you’re in a fight or a battle, you get hurt, you get injured. Then patients come in and say: “I can take it. Give it to me.” In this curative setting that we were in, I do think there is a certain”I can take it” attitude. “Whatever we have to do, and I’ll deal with the consequences later,” which of course has brought up the survivorship sort of strategy, and we are getting better at giving less to give the same amount.
If you look at patients with metastatic cancers who are ultimately going to die of their cancers, their initial sort of approach to this is one of the battles. “I can take it, give it to me.” All guns blazing, but then a year or two later you begin to see this quality of life values coming in. The side effects matter, the costs matter. How much time are we talking about?
You have a different patient, a different family that you’re dealing with in year two and three of that journey than you were when you first met them.
Liza Marshall: Well, then we talked too about quantity versus quality, which it definitely is, but it’s also that fear versus hope debate, which was something we talk about a lot because your initial response is fear and I’m just going to do whatever, and then and then it is that hope.
I mean, yes, I want to live longer, but I want to be able to do things with that time. I don’t just want to do treatment, then go home and feel crappy for a week and then do treatment, go home and feel crappy again.
Dr. Denise Millstine: So we have talked about so many things that I learned from your book, but we’ve yet to talk about coming to the process of writing the book. If you’ll allow my brief summary: What I understood was that, John, you became very passionate about all patients getting access to care the way Liza had had access to care, getting that red carpet treatment available all the time.
Then you put yourself in a place where you were getting contacted directly by patients nonstop and, if you’ll allow the word, burned out a bit and needed to back off and the two of you decided to take a break and go to Europe and put together this book. Tell us about that.
Dr. John Marshall: Country formerly known as Europe. England. We were lucky enough to get to go to Oxford. Georgetown maintains some flats there and you have to apply, but we won and we went for a few months and with one of the tasks being to write this. We had made an attempt several years before to write this story based on some friends prodding us to write it.
We realized at that time we didn’t have either the time or really the mental space to do this. It required getting away. We did it in sort of a funky way. I would go down to the library because romantically, that’s where you write in an Oxford Library, and so I took my laptop down there and Liza stayed in the flat, pretty much every morning for this fall of 2019, and we would write and we didn’t actually tell each other what we were writing.
I knew more or less that Liza is concrete and was going to tell the story of the thread of her treatment and she knows that I’m kind of out there and was not going to be telling that thread. So we knew that, but we didn’t share with each other until we were pretty much done with what we had written.
By November we traded chapters. We wrote way too much. I wrote way too much, and it was a hard few days reading what the other had written and the sort of title of “Off Our Chests” again, Liza’s idea, was not only off our chests to the world, but it was really off our chest to each other. Things that we wrote, that I particularly wrote, and Liza wrote some things too, that stung.
If it had been said in the heat of the battle, so to speak, it would have been harmful. I think really hurtful. But the time and the fact that Liza was pretty much, okay now, it was a safer space. But we also thought these are the kinds of feelings that we were having, and so maybe others would want to know that those are normal feelings, that it’s okay to feel that way. That’s why many of those stayed in the book.
But anyway, we then had a little pandemic help that allowed us to put the book together. But as you know, it’s written in alternating chapters where we sort of tell the story through, but in two voices, and we enjoyed the end product. We hope it’s helpful to others.
Dr. Denise Millstine: It was clear that you were bringing the perspective and your own individual perspective. But to your point, I really appreciated that you didn’t keep the romanticized idea of what it is to have breast cancer and support somebody with breast cancer, because it never is entirely that way.
No matter how much you love the person that you’re going through, something like that, there are difficult times, there are frustrations. I think that was really helpful that you approached it with such honesty.
Liza Marshall: The person who suggested we write the book was actually reading on a sort of weekly basis what we had written, though we weren’t reading what the other wrote, but one, I think she was sort of able to see an arc, but she was really good about knowing what one of us had said and so she would try to draw out from the other one of us without saying, “How did you really feel in this moment? Try to think back about what your actual feelings were and not just the facts.”
It’s not something I think we would have been able to do on our own or maybe even recognize. But having a third party there who knew what a book should look like and what needed to be in it. Pulling that out of us was really important.
Dr. John Marshall: Yeah, I wrote a sex scene and she made Liza write one too. They’re not good sex scenes, by the way. So don’t get the book for that. I promise.
Liza Marshall: To their point that’s an important part of cancer treatment for both sides, as is whatever treatment you’ve had. Cancer interferes with your sex life in many ways, and so as John says it’s not detailed, but I think it’s important that the topic is out there, because I do think it’s an important one for people to talk about.
Dr. John Marshall: And it really, for me, became therapy. I got to the point where, down in that dusty library, where I didn’t care if anybody ever read this. I just needed to get it out. I needed to get it down and what I was thinking. And again, a lot of it made it to the cutting room floor, but it was good for me.
It was very helpful for me to have done that and for Liza to share those and vice versa. As people enter this world of cancer, and you take care of these folks a lot too, is that they don’t understand the world they’re about to enter. There’s not a good rule book out there, and this isn’t a rule book.
We debated whether this was a how-to or not. In the end it probably has those elements, but it’s really our feelings and our experience in it so that as we walk you through our experience, you’ll come upon, in your own world, “They did it this way. I don’t want to do it that way. We want at least some guidance.”
Dr. Denise Millstine: I was going to ask you about the readers that you were picturing as you were writing the book, and now that it’s in the world, the feedback, because I think you said at Grand Rounds that some people have told you it feels like a how-to book. Any shift in the readers you pictured compared to the readers after the book was published?
Liza Marshall: For me the hardest part really was that all the readers I pictured were people I didn’t know. Then, of course, people in our church read it, and our children read it, and for some reason it had never occurred to me that these would be people reading it, which has been fine and everybody’s been lovely about it, but that was a real shift for me because I did put things in there that I have never had anybody before and that were very personal.
That was, I think for me, the biggest thing. I think we’ve been really pleased at the response we’ve had from readers. I know you’ve got some patients who have reacted differently.
Dr. John Marshall: It’s the patients who have metastatic disease. So Liza gets out of it. This is not one of those books where the patient dies. These are patients who know they will die. I’m hoping they won’t, but I know they will. They get part of the way through it and feel compelled to just stop.
It’s too intense for them. Caregivers, I think, have been the unexpected reader of the feelings that caregivers give because Liza comments, I comment on just how important the role is and how little you’re acknowledged in this process. It is a book that’s a real shout out for the pit crew, if you will.
We’ve been quite pleased at the way the medical community has embraced it, as you say, with Grand Rounds, but we’ve been having a lot of fellow book clubs, of oncologists in training, if you will, but other healthcare providers too, not just cancer care providers. The advocacy community has embraced it.
Everybody sort of sees their place in it. I know you sort of pitched it as a breast cancer book and that’s a fight I lost. It has a big shaggy pink ribbon on the cover. Shaggy on purpose because we’re sort of tired of that culture on one level. But we have gotten a lot of readership from the non-breast cancer community, too, which we’re excited about.
One other place that I was surprised about is the drug development industry, and the pharmaceutical companies, particularly during the pandemic. They’re trying to get a better understanding of what’s going on in a cancer office and the cancer center. It does give you that sort of behind the scenes feeling of what we’re thinking and how we’re feeling. So they found it useful, too.
Dr. Denise Millstine: To your point about the patient reading this book, it might hit too close to home, but that it would be really great for a friend or somebody who cares about a person going through breast cancer treatment as an inside look into some of the elements and some of the ways that support can be given because you had a wonderful community of support.
You mentioned a patient with metastatic cancer who it seemed was not going to survive their cancer, and one of the books that I recommended to patients in that situation is “The Bright Hour”by Nina Riggs. And again, this may or may not be right for the patient herself, but I’ve seen it be helpful for people who find it difficult to approach end of life conversations that if I can’t talk about you dying, I can talk about this beautiful writer, Nina Riggs, who talked about her dying.
Then we can talk about the same topic in a way that becomes accessible and hopefully, eventually brings you to talking directly. I wonder if there are other books that you might mention or have found to be helpful in the cancer experience or caregiver experience.
Liza Marshall: I really like “The Unwinding Of the Miracle” by Julia Williams. She was also diagnosed at a young age with metastatic colon cancer and did not make it. But it’s a beautiful book and her life experiences are more than just the cancer. She had a very different approach.
She’s very angry about what happened to her, and I think there’s a place for people to be able to express that. I think it fills that space in the cancer patient’s experience sometimes. It’s being able to say, “I’m really angry.” And the caregiver.
Dr. John Marshall: I was going to say “Being Mortal,” by Atul Gawande, we all should read that; about life and death and the inevitability of that and managing that. When I think about the relationship of the cancer patient, say, with metastatic disease and the caregiver, a spouse, longtime spouse often is the caregiver. I think it sounds terrible, but, and I’ll say this to the couple as we’ve gotten to know each other a little bit, that it’s harder to be the caregiver, the survivor, than it is the patient, because on some level, the patient gets to die.
That’s a hard thing to say, but that surviving spouse makes them 75-years-old. Their plan was to spend the entire rest of their lives together, and now this 75-year-old is going to have to figure out how to do it by themselves and be missing that person. That’s hard. That’s a lot of grief that they’re going to have to endure.
We in the medical community appreciate that enough; that that other person in the room is maybe the harder of the two jobs.
Dr. Denise Millstine: You comment in the book that not only do you lose your partner if your partner passes away, but you have invested all of your energy and identity in becoming a caregiver and you lose your role or your job. There is no longer someone to care for and the hole left is gaping. I would agree we do not necessarily really pay enough attention to that experience and supporting those patients, those caregivers.
Dr. John Marshall: Most connections realize that there’s a bereavement group or a caregiver bereavement group. And they become very close.
Liza Marshall: They’ve gone on. We have friends who’ve been in there for years and they add people and it’s really a beautiful thing because they do help guide people through and continue to support each other.
Dr. John Marshall: I referred a patient there the other day and she goes: “But do they do social things?” I said, “Yeah, they do.” And she goes, “Oh, good. Because I think I need to do that.” With people who know how they feel.
Dr. Denise Millstine: And can understand the ups and downs of that journey. Well, the two of you are just such a gift to the world and to the healthcare community and obviously to our podcast. Really have enjoyed talking to both of you and diving deeper into your book that I know will make so many people’s lives that much better and easier to navigate.
It’s been such a pleasure to talk to Liza Marshall and Dr. John Marshall, who have personal experience in the cancer world and have been bold enough to share it with all of us. Thank you both.
Liza Marshall: Thank you so much.
Dr. John Marshall: It’s really our honor. Thank you.
Dr. Denise Millstine: Thank you for joining us to talk books and health today on “Read. Talk. Grow.” To continue the conversation and send comments, visit the show notes or email us at email@example.com.
“Read. Talk. Grow.” is a production of Mayo Clinic Press. Our producer is Lisa Speckhard-Pasque and our recording engineer is Rick Andresen.
The podcast is for informational purposes only and is not designed to replace the physician’s medical assessment in judgment. Information presented is not intended as medical advice. Please contact a healthcare professional for medical assistance with specific questions pertaining to your own health if needed. Keep reading everyone.