Episode 59: Lawyer, mom, and patient from hell living with metastatic breast cancer, Abigail Johnston

The Patient from Hell (00:01.148)
Hi, everyone. This is Samira Daswani, the host of the podcast, The Patient From Hell. So Abigail and I have been trying to schedule this and trying to record this for a while now. And we are finally here. Welcome to the show, Abigail.

Abigail Johnston (00:15.259)
Thank you. I'm very glad to be here finally at long last.

The Patient from Hell (00:20.424)
All right, we're gonna start with the question. How are you?

Abigail Johnston (00:24.322)
Doing okay, hanging in there. I'm on N-HER-2 at the moment, which is my seventh line of treatment since my de novo metastatic breast cancer diagnosis in 2017. And it's not a very fun medication to be on, but we're getting through it.

The Patient from Hell (00:44.084)
I have so many questions just in the first line of yours. Where do you wanna start? At the big me or the end? You get to choose.

Abigail Johnston (00:53.875)
We should start at the beginning, right? You know, the whole chronological thing.

The Patient from Hell (00:59.104)
Let's go to 2017!

Abigail Johnston (01:01.994)
Yes, so 2017, I was 38 and I was tandem breastfeeding. My two boys, they were one and three about to turn two and four and I felt a lump. And I went to my lactation consultant thinking that it was something to do with breastfeeding. I had a couple clogs in the four years that I breastfed and fun fact:

there's really no doctor that treats your breasts when you're breastfeeding. So it's kind of hard to figure out like, you know, your primary care physician might know some things, your OB-GYN is kind of done with you, the pediatrician knows some things, but you know, you're kind of in this gray area. And so I had uh board certified lactation consultants that I had worked with. In fact, I worked with a milk sharing organization

and donated about 25,000 ounces of breast milk while I was breastfeeding. I know, it's like the one thing my breasts did correctly. And so my lactation consultant said, you know, this doesn't look right. Go see your primary care doctor. Went to my primary care doctor. And I'm very thankful that she did not start with, you're too young for breast cancer. She said, there's a history of breast cancer in your family. My mother had breast cancer.

She said, I'm 95% sure that nothing's wrong, but I'm gonna send you for your very first mammogram. So at 38, I went for my very first mammogram. I sprayed milk all over the machine. They were really unhappy with me, but that's just the way it works when you have a bunch of milk. And then everything went from there and it definitely was breast cancer. I was misdiagnosed for a couple of months, but found out a couple of months later that in fact, I...

I was stage four, so the cancer had left my breast and traveled to my bones, all of them, before I even realized what was going on.

The Patient from Hell (03:03.313)
What did they diagnose you with initially?

Abigail Johnston (03:06.606)
They thought I was stage two initially. The place that I went did not follow the NCCN guidelines. I know now, I did not know that then, but you're really not supposed to stage people until you've done the scan of their body to ensure that it hasn't traveled. And despite the fact that I was having pain, in my mind at that point, the fact that I was having pain in my leg didn't really seem connected to my breasts. At that point, I wasn't talking to the medical oncologist

that I was talking to about my breast cancer, about the fact that my leg was hurting, but I actually had larger tumors in my legs than I did in my breast. So within a week of finding out I was stage four, I was in surgery to have rods put in both of my femurs. It was, 2017 was quite the summer.

The Patient from Hell (03:56.532)
Okay, how did, I wanna go back then. So you've been diagnosed with stage two.

You have leg pain, they haven't done a scan. How do you go from there to having a scan to having a new diagnosis?

Abigail Johnston (04:13.422)
So the very first chemo treatment that I had, because I had the, they did genetic testing on my tumor when they did the lumpectomy and determined that I would benefit from chemo. And in my first chemo session, the nurse checked the box to check my tumor markers. It was not standard of care. It was in fact a medical mistake that she did that, but thank God she did.

So in the haze of the day after Adriamycin, which is nicknamed the red devil for good reason, my doctor called and said there was something wonky and I needed to go for scans. And I can't even explain why I didn't get all freaked out at that point. I think I was just overwhelmed with all of the pre-meds and what was happening. So it took another week or so. And I vividly remember it was...

June 27th of 2017, we got a call from my doctor's office and they said, you need to come see the doctor today. We don't care when you come. You just need to come. And again, I was like, Oh, I called my husband. I've got to go. I got to see the doctor. They said, just come whenever I said, I'll just go. Don't worry. You don't have to leave work. He had already missed so much work. And I'm thankful that my husband was actually thinking a little more clearly than I was because he said, no, I'm coming with you.

And thank God he did because that was the appointment when the doctor said, you know how we were talking about how breast cancer was going to be a blip and you were going to get through it and move on with your life and something else was going to kill you? He said, yes. And he said, well, now breast cancer is going to kill you. And so we had to sit there. Thank God my husband was there with me and we had to digest that news and digest that the plan that we thought

was going to happen in terms of my treatment was gonna be completely different.

The Patient from Hell (06:16.972)
The only thing I'm able to say at this point is there's a call and then there's a call and like...

Abigail Johnston (06:22.302)
Right. Yes. And in hindsight, now, I mean, listen, before my diagnosis, I went to the doctor once a year for my well-woman visit. And yes, when I had kids, yes, you see the doctor a whole lot more when you're pregnant and all of those things. But I really didn't interface much with the medical system. Now, as a lawyer, I had done some medical malpractice cases. And I was somewhat familiar with some things, but

I didn't really understand how to be a patient outside of some things that I had to advocate for as a pregnant person. And it is a very different thing when you have a terminal diagnosis that means you must interface with the medical system to stay alive. So there is a vulnerability and a dependence on a very broken system that I did not understand at that point.

And so yes, I asked questions and yes, I felt confident in my team and in the decisions that we were making. With the benefit of hindsight, I see a lot of things that could have, should have gone differently, could have, should have gone better, that were at that point very much beyond my control. Because when you are diagnosed with cancer, regardless of the type, you have to make a million decisions in a very short period of time with a very small amount of information.

And that has really informed how I have lived with the disease and how I have advocated and how I've then looked at helping others through it because at that point, I did not know what I did not know. And I was being asked to make decisions that have affected the rest of my life, which is a very scary place to be when you are not familiar with what's going on. And I'm not casting aspersions on

the efforts of those medical people because I think they did the best that they could, but it was a lot more overwhelming, I think, than maybe even, I think people when they're in it all day long, they don't know how overwhelming it is for somebody coming in. Someone just dropped a bomb on you and you have to somehow think clearly and somehow make decisions in that moment with that tiny bit of information. So benefit of hindsight has helped me look at things a whole lot different.

The Patient from Hell (08:44.36)
Can you talk about and give us an example?

Abigail Johnston (08:48.206)
Sure. One example I think very early on was my breast surgeon tested me for the BRCA genes. And I did not understand that there are actually many more genes, more than 40, that are associated with breast cancer. And so it wasn't until about six months, well, four months into my diagnosis that we finally understood that in my family we carry the germline mutation ATM. Now, that would not have changed my treatment,

Abigail Johnston (09:18.21)
But the fact that surgeon was cherry picking genes to look for versus ordering the full panel, I didn't know to ask for that. I didn't, you know, didn't know to say, wait a second, that's not all that we could be looking for. And I understand why she did. It's because it's very hard to get insurance to pay for genetic testing, except for some very specific criteria, which I met. And so instead of fully explaining that,

She's like, oh, we're gonna test for BRCA and then you don't need to worry. Obviously that was something where I missed that particular piece of information. And it wasn't until we discovered that I'd been stage four, had been stage four since the beginning, not the norm. So, you know, they tell you 60% possibility that 75% possibility that I have always been in that little 10% or 5%. And so playing the odds.

which is what a lot of doctors do, right? You know, it's very unlikely that this thing is going to happen. I have now learned not to rely necessarily on those statistics because when I meet the criteria for genetic testing or for some other testing, I've learned to ask for that testing, which hasn't always helped in my relationships with the doctors who don't necessarily want

to do that extra thing and fight with my insurance company to get things covered and that sort of thing. But the longer I've lived with this disease, the more I have realized that when I have a gut feeling about something, I have to follow that through. Especially when I meet the criteria for that particular testing.

The Patient from Hell (11:05.857)
I definitely relate. There's a reason this is called The Patient From Hell.

Abigail Johnston (11:08.162)
Hehehehehehe

The Patient from Hell (11:12.688)
Let's maybe talk about that a little bit, right? Because I think there's this, I think you're saying so many very, very important things. I'm just gonna underline a couple of things, right? There's this massive amount of information asymmetry.

The stake is very different if you're the oncologist and you're the patient. The stake is just different. Like what you are fighting for is fundamentally different.

Oncologists are constantly to use your tone of phrase, playing the odds. And you may be someone who doesn't fall into that band.

And then the last piece, and I think somewhat emotionally hard for me, is this individual who, at least the first blush, is really truly trying to save your life, like I think the intention is positive, is either ill-equipped, ill-informed, or just too busy to do what is required in your specific individual case.

Abigail Johnston (12:11.246)
And it's hard to know which one of those things is actually the case, right? I mean, I think that because most people fall into that, you know, 85, 90%, it's safe from their perspective to kind of have a general, like, this is what we do. But this idea of precision medicine, this idea of personalizing medical care is something that everybody talks about, but very rarely actually does.

And I really think that it's time. I think that if you don't take the time to do that, that you can't, and then that burden falls more on patients to insist on things not being cookie cutter, on things being more personalized, which is not always received well. Every time I've reviewed my medical records, at some point, every single provider has called me difficult, everyone.

The Patient from Hell (13:11.536)
You and me both, Abigail, don't worry.

Abigail Johnston (13:14.686)
And I'm not necessarily upset about that. I kind of wear that as a badge of honor because quite frankly, as much as all of these doctors are doing their best, I have caught, I think I'm up to 40 medical mistakes.

The Patient from Hell (13:29.884)
What?

Abigail Johnston (13:34.78)
And some of those are big things. Some of those are small things. Some of those are, I gave them certain pieces of information, they didn't record it properly. It didn't get properly into my medical records. I have been treated at a variety of places. Some of that is because when I was diagnosed, they told me you have 12 to 36 months to live. And so we thought, okay.

if we have 12 to 36 months to play with, to look at, we picked up, when I say we, my husband and my two kids and I, we picked up and we live in Orlando. I was diagnosed in Orlando. We moved to Miami to live with my parents. Now some of that was because after this rod surgery, I wasn't walking, my kids were little, I needed a whole lot more help than my husband could provide because of course, you know, he has to go to work to make sure we have health insurance.

So we picked up and moved to Miami. So I was treated in Miami for about five years. And of course I hit the five years and my parents start talking about like, well maybe we'd like to retire and sell the big house. So we picked up and moved back to Orlando. So I've been treated in a variety of places. And certainly some of the continuity of care issues have come because I've been treated in a variety of places. Got a lot of second opinions from a lot of different doctors. But

The lack of care that is often taken to symptoms, to looking at specific things, to recording what the patient is saying properly, that has been a pretty big stumbling block in a lot of ways. So, which is, I think, why I don't necessarily trust when people are saying certain things. I end up having to verify a lot of things and ask questions because I've been...

because I've caught things and because I've seen that things are not being done properly way too often.

The Patient from Hell (15:31.757)
I can definitely relate. I had a doctor tell me recently that my PCOS symptoms were because of cancer treatment.

Abigail Johnston (15:40.663)
Oh my gosh.

The Patient from Hell (15:41.692)
I was just like, I'm not a doc but I've checked with many docs who are oncologists and I'm pretty sure that's not a true statement and I'm almost certain that you're not gonna give me any medications, because that's just, that's just not right. it's just not like we're not in the ballpark of like interface medicine right now like what?

Abigail Johnston (16:00.903)
Oh my goodness.

Yeah, it happens, it happens. And if the patient is not paying attention, if the patient is say, you know, not very high on health literacy, if the patient a lot of times is more elderly and doesn't necessarily have all the brain power or dear God having gone through chemo and all the cognitive dysfunction that happens, if you are not fully present and fully asking questions and trying to understand, lots of things

can happen and I've talked to way too many patients where things have happened that never should have. So it puts, I believe, an inappropriate burden on patients. But to have to advocate for themselves and then advocating for yourself becomes a dirty word sometimes because they don't really like that so much.

The Patient from Hell (16:55.496)
I think it's the last part that I struggle with, right? For me, it's like, look, if you're the system and you're saying, hey, I need to learn how to be a patient and I need to teach myself, I need to show up, I need to be prepared, I need to ask questions, I'm willing to do all of that. But then you can't turn around and tell me that I'm difficult.

Abigail Johnston (17:13.472)
Exactly.

The Patient from Hell (17:14.308)
I think it's the last part that I struggle with, which is, it's like, look, if you're gonna, if there is this like distribution of burden, okay, all right, reality of care. But there's also the emotional backlash. It's like, I need to show up to make sure and verify, but I need to show up very nice, calm, patient calm, and not get upset. Because if I get upset, it's just, it's this like little flywheel of getting stuck in there.

Abigail Johnston (17:28.086)
Exactly.

Abigail Johnston (17:41.326)
100% and my husband reminds me regularly that I get away with things differently because I'm white, because I'm a lawyer. So he is Jamaican and dark-skinned and he has the opposite a lot of times experience with doctors. I talk to lots of patients where, you know, one thing that I see all the time is a difference in how people's pain is treated.

My doctors are like handing me oxy, please take oxy. I know you're in pain. I've tried very hard to stay off of opioids. But then I have friends who come in with the same or even less amount of pain that I live with. They're darker skinned and they're told to go take Advil. And I mean, that juxtaposition and how people are treated differently is really in my face a lot of times as I'm talking to other patients. And I think because I...

have being a lawyer and being educated and being able to talk through things with some semblance of logic, although sometimes that goes out the window, I do get a different response than people who are coming in triggered and upset and that sort of thing. And that is just a whole other layer of trying to access a medical system that views you in a certain way, that pigeonholes you in a certain way.

I don't necessarily have the answer for that, other than to say that it happens, it's the reality, and I wish it wasn't.

The Patient from Hell (19:15.552)
So my question for you is, so you've been on this since 2017, right? In the last seven, almost seven years, right? Almost seven years now. Have you seen a change?

Abigail Johnston (19:25.646)
Almost.

Abigail Johnston (19:32.354)
In what exactly? In how the medical system?

The Patient from Hell (19:35.608)
In patient experience and interactions with docs, in how you're treated, in any dimension, outside of, hey, there's a new treatment available, right? I'm assuming that that's true because in breast cancer there have been a lot of sort of new drugs that have come to market. So outside of that, just the experience of having a patient going through it, I'm curious to see from your perspective if things have shifted.

Abigail Johnston (19:44.124)
Hehehehehehe

Abigail Johnston (20:04.11)
I think that there has been a lot more lip service paid to this idea of patient-centered care. They're talking about it more than what I was aware of back in 2017. I have never experienced patient-centered care in any of the 11 hospital systems that I have accessed in the last seven years. I think there are a lot of people with really, really good intentions, and they want to center care around patients.

The Patient from Hell (20:31.867)
I'm just...

Abigail Johnston (20:35.01)
But the reality of it is something that to me is not, the system itself is dehumanizing. The system itself takes away your humanity and works on this idea of everybody being the same. And I'll just give you an example that just really exemplifies it to me, it's scheduling. I don't know how many schedulers have called me,

hundreds at this point probably, we have scheduled your appointment for this date at this time. Even though in every place I'm treated, it's in like 12 places in my chart, do not schedule an appointment without calling this patient. Now I'm out of step, right? The average breast cancer patient is 60, right? I was diagnosed at 38 at a one and three year old.

Now my boys are in the process, well, my eldest just turned 11 and my youngest is about to turn 9. They have to go to school. They have, you know, activities and things. And it's almost always someone is scheduling an appointment for me during the time where I have to drop off my children at school or during the time that I have to pick my children up. And what I've tried to do is just say don't schedule anything without calling me, but

it happens regularly. And I realized that it's easier for them, right? They have this many patients, you know, 10 patients they've got to schedule today and they schedule them because they got to get everybody in. And then they're picking up the phone to tell you about the appointments. And for somebody who maybe is retired, maybe doesn't have kind of these very fixed things in their schedule, like I can't say to the school, I'm just going to pick my kids up an hour later today. Like that does not work.

And yes, I could take them in later theoretically, but then they're getting a tardy and then they're missing things. And so my solution to that was just to say, don't impose anything on me. Don't assume anything about my schedule. Just call me. And even though I've been told at every institution that is an acceptable boundary to set, it still happens to me all the time. And that to me is a very clear example. If you are actually centering care around patients.

Abigail Johnston (22:57.494)
their time, their schedule is something that you're honoring and that you are respecting. And I have, no institution has done that consistently. The place where I am treated at the moment, they are doing much better, partially because I've had to file a couple of complaints because I tell them the boundary and then I enforce the boundary. And I am sure...

I haven't seen this doctor's records because I haven't had to go get a second opinion with her records yet. I sure said I'm difficult in there. And that's okay because we have made a very concerted effort to normalize my kids' lives as much as possible. And as a parent, I don't, I mean, yes, things are disrupted for them because I have to go to treatments because I don't have the energy all the time to do all the things that I want to do. I can't show up as a mom the way that I want to because of my diagnosis.

But what we can do is make sure that what I am doing in my treatment and my appointments happen as much as possible during that school day. So have things changed? I think we're talking about it more, which is a difference. In my mom's generation, when she was treated for breast cancer, nobody was talking about patient-centered care. Or if they were, it wasn't enough that it came up enough. And so I do think that we're talking about it more. I just think that

these gigantic hospital systems, it's really hard for them to be at all personalized because the only way they're profitable is to have it be an assembly line and have it be very, very general. I read a study and I'm not gonna remember the site, I'll see if I can find it for you, but just talking about the ratio of patients to healthcare workers in hospitals, that the only way that it's actually safe

is if every patient stays in bed. That's the only way it's safe. And so if you think about that, that there's not even quite enough healthcare workers if everybody needs something, and if everybody's up and out of bed, that to me is an excellent metaphor for how I think a lot of other things happen. The only way their practice works is if people are not difficult. The only way their practice works is if people come and show up

Abigail Johnston (25:20.95)
when they're told to come and show up. So I try to keep that in mind when I'm being difficult.

The Patient from Hell (25:28.455)
Hmm. I'm gonna ask you a question I don't think I've asked anyone before. Are you ever scared of being denied care? By being denied care?

Abigail Johnston (25:37.41)
So that is a conversation that my husband and I have all the time, because that is his fear. That because I am very outspoken, I will file complaints and I am very

Abigail Johnston (25:52.122)
demanding maybe the right word or that may not be the right word. That is his fear. I have been fired by one doctor. I've been fired in my life by two doctors, one because I didn't want to have a second C-section and so he told me to go somewhere else to get a V-back. And one, the doctor that he was an endocrinologist and because I had hyperglycemia from a medication,

and I didn't fit his like diabetes protocol. And so, you know, he said, you need to go elsewhere. That's it. That's all that's happened so far. And so there are times when my husband helps me to take a deep breath and reel things back in. When I am advocating for myself, I'm not yelling, I'm not cursing, I'm not casting aspersions on anyone. I am logical, I am pushy,

Abigail Johnston (26:51.771)
It's not the typical difficult, right? I never get abusive to people. I'm never screaming at people, that sort of thing. But yes, that is something that we talk about because at some point, some doctor may decide that it's too much.

The Patient from Hell (27:07.752)
How do you know you're right in what you're advocating for?

Abigail Johnston (27:15.982)
That's an excellent question.

The Patient from Hell (27:16.185)
I'm going to clarify that a little bit because scheduling stuff, it's not easy, but it's your life, right? But on clinical stuff, on stuff where you're not, for lack of a better word, quote unquote, an expert, how do you show up that way?

Abigail Johnston (27:37.922)
So I tell all my doctors, I'm the boss, I'm the decision maker, you are my advisor. So you are telling me, because you know, as a, and I'll even talk about like as a lawyer, I would have expert witnesses, right? And they would help me understand or explain something that I'm unfamiliar with. So I tell them, I take responsibility for my decisions. I am leaning on you for your expertise. I am leaning on you for your recommendations,

but I'm looking at this as your opinion, you're giving me your opinion, which is why I seek out multiple opinions from multiple doctors. And so there are times when I have to, and I do this very intentionally, I've come to a decision or I've come to something that I want to do, but I have those trusted doctors that I'm going to for advice, and then at some point I have to try to take two steps back

and do a gut check and make sure that I'm thinking properly about things. And so a lot of that is, you know, lists of pros and cons. A lot of that is, okay, this person is saying this, this person saying something a little bit different. Um, my husband is a great sounding board. We're both very cerebral and logical, right. And trying to make decisions, but at some point there's kind of that gut. I've got to make a decision at the end of the day. And so we,

we do kind of have that panel of experts. There's five medical oncologists that I consult with when I have to make a big decision and it's an odd number on purpose so that if there's a vote, then there's an odd number. And I tell them all this, right? I tell them like, I'm consulting with you, I'm trying to understand this, that sort of thing. So on big things like that, I make decisions in that way. But...

I've learned to trust my gut. I spend a lot of time immersed in research. I spend a lot of time talking to other patients. You know, I go to the conferences where they are presenting the new medications that are being approved by the FDA and things of that nature. And so at some point, we just have to make the decision and go with it. But I think the value of that, and I've told some of my doctors this, the value of that is I'm never mad at them. Like I take responsibility for my decisions.

Abigail Johnston (30:01.558)
there have been times where no, it probably wasn't the right decision in terms of, you know, I went into a clinical trial and it abjectly failed, but I'm not angry at them. We rolled the dice and we knew the risk and we knew the pros and cons walking into it. So, you know, I think that honestly takes a lot of the pressure off of them. Not that they're thanking me for that, but they should be.

The Patient from Hell (30:27.432)
So I think you said something super, super important. I think you said it twice. But I think if a patient starts saying that, I think it might ease some of the tension, is I take full responsibility for this decision. Because we've interviewed a lot of oncologists, we've worked with a lot of oncologists, and I think part of the fear in enabling a patient to make the call, again, I'm putting that in quotes, is

that they may not know all the information, they may not interpret the information, or they may not have, they don't fully realize that they are taking responsibility and they're letting the oncologist not take responsibility. So I think it's not that, I think it's super important. And I don't think enough patients do it. I don't think enough patients say it.

Abigail Johnston (31:18.154)
I, yes, I totally agree with you, 100%. And I actually, I did a presentation at San Antonio where I was talking to them about this whole idea of presenting information to patients in the way that they take in information and helping patients understand how to make decisions. But I talked about there being a spectrum, a spectrum of, you know, on the one end, the patients who just want to be told what to do,

and okay doctor, I'll do exactly what you're telling me to do. All the way to the other end of the spectrum, somebody like me who's taking full responsibility for those decisions. People fall on that spectrum in so many different places. And quite frankly, at different times, I have fallen in different places on that spectrum. I think of when I had sepsis and I was in the hospital and was really sick, probably more even sicker than I realized.

I was not fully making decisions, right? I mean, I was simply saying, okay, because I had no idea what was happening. So I think we all fall on that spectrum in different places at different times and with different decisions. One of the things that I've worked really, really hard to do is to stay off of opioids. And there is a lot of pain that comes with having cancer in your bones. There's nerve pain, there's bone pain, there's all kinds of pain, but...

I didn't like how I felt on opioids. I woke up from my leg surgery on Dilaudid and I was talking to shadows and was totally out of it. And so that experience, as well as just not wanting to deal with the side effects of opioids, I have worked really hard utilizing other pain management things like cannabis to manage my pain so that I didn't have to go on opioids. And that has not been a popular.

decision among my doctors, because I come in and I'm talking about being in pain, and what do they want to do? They want to give you a prescription to alleviate your pain versus having a conversation with the patient, well, what are your goals? I can't drive when I'm on a bunch of pain medication, and I have to take my kids to school. So that's a non-starter for me. I have to be able to take care of my kids.

Abigail Johnston (33:37.774)
And it wasn't enough to, well, just get a babysitter or just get somebody else to help. No, I wanna be present with my kids. And so there's not enough of that value-based discussions with patients, except with palliative doctors. And if there's one thing that I tell people who are newly diagnosed, especially with terminal cancer, is get a palliative doctor. It's not hospice.

You're not going towards death, but it is somebody who legitimately their whole job is to help you manage your symptoms. And that has been one of the saving graces for me because my palliative doctor has often in various circumstances, picked up the phone and called my medical oncologist and supported me and helped me in advocating for what I was trying to do with the medical oncologist. And so having another doctor,

The Patient from Hell (34:23.538)
Mmm.

Abigail Johnston (34:34.978)
who's talking doctor to doctor to your medical oncologist, that can also be something that is very productive. I've also done the whole, okay, Dr. So-and-so, I will do it your way for one cycle or for one month or whatever. And when I come back and tell you that didn't work, then we go with my plan. And that has actually worked really well

with many of my doctors like, I'll try it your way first, I'll go along with that. And when I come back and I'm miserable because of all of the side effects of whatever medication you wanted me to take, then you agree that we'll go to something else. And so kind of that negotiating with, okay, yeah, we'll let you cover your butt and we'll let you do kind of the norm or the typical, totally fine with that. But when the side effects that I'm anticipating happen, happen,

then we'll move on to what I wanted to do in the first place. So it takes figuring out each doctor, kind of developing that rapport and that relationship with each doctor. And as I've, you know, unfortunately had to change doctors, whether because doctors have retired or I've had to move, that sort of thing. I've learned that I have to learn each doctor and each doctor has to learn me,

in the process of having to make all of these big decisions on cancer care. So anyway, yeah, it's just, it's a, it's a constantly moving target in a lot of ways.

The Patient from Hell (36:06.696)
The thing that strikes me in this conversation is one, a lot of similarities between, I think, what you're describing, what I've gone through with my own set of docs. But what strikes me is it's pretty common for patients to get up to speed on the clinical side of things for whatever disease they have, right, in the cancer world. Right? You, Dr. Google, JGPD, WebMD, PubMed, like, and Google Scholar, like, those rabbit holes.

I've also seen patients learn stats. But in hearing you talk about it, and I remember I used to feel like my oncology appointments were multi-stakeholder negotiations. And my husband and I would be like, my husband would be like, what are you doing? This is not a work meeting. I'm like, honest to God, it does. Like I am walking in with data. I'm walking in having studied a clinical trial, understood the inclusion criteria, ready to negotiate a dosing on a drug.

Abigail Johnston (36:49.727)
That's true!

The Patient from Hell (37:05.652)
Like it just does. And I would like prepare, like the exact same way you prepare for a business negotiation is how I would prepare for my oncology appointments. And in hearing you talk about it, because I think I'm hearing the same thing. I'm hearing the, I'll try your way, but there's a definite time period. And if it doesn't go that way, there's like a, like it's, it's the same negotiation tactic that I would imagine you're using. I heard the expert panel, you want an odd number of panelists, because you want to break the tie. Like a lot of.

Almost like as a patient, you need to not just learn clinical medicine, you need to learn stats. Science, because now in the world of biomarker testing and diagnostics, or science, straight up biology. Oh, by the way, also just straight up negotiation, because it really is about negotiation. You need to understand your values, their values. What is that CYA? Because I heard you say that. You need to allow them to cover their butt.

Abigail Johnston (37:53.147)
Hehehehe

Abigail Johnston (37:58.198)
Yep, no, it really is.

The Patient from Hell (38:03.3)
Which is true, I have heard the same thing. They need to practice guideline-based medicine. So you have to let them try the guideline-based medicine.

Abigail Johnston (38:14.722)
Yes, no, absolutely. One thing that I have found to be very effective is to send a message to the doctor. When I know that it's a big appointment, right? We have to make a big decision or we're having to talk about these things, I will send a message in the portal or their email or however they allow me to send messages to them and lay out either the list of questions that I need to have answered or like.

here's how I'm thinking, like point A, point B, point C, or this is the way my mind is working. Because legitimately, so many of these appointments are 10 or 15 minutes. And so I have learned that when I have these bigger appointments where we have to make a big decision like changing medications, I prepare for it like I would prepare for a court hearing. And some of the...

It's been more than 20 years since I graduated from law school, and some of those things have actually served me very well. Maybe not so much because they probably think they're in a negotiation with a lawyer because I do. When I get triggered and when I get upset, I do start to cross-examine people. And my husband will be like elbowing me, like, stop cross-examining them. Nobody likes to be cross-examined. So to manage my anxiety,

a lot of times it's helpful for me to have like really worked through my thought process ahead of time, send that to them so they see how my mind is working. The other thing that I do a lot of is, you know, they'll say we're recommending X and then I'll say, okay, so how do we get there? Like walk me through the whole list of how your mind is working. Like what are the pros and cons or why are you saying that?

And so that also helps me kind of learn how they are thinking or how they're analyzing what pieces of data are they looking at. So that way I'm looking at the same pieces of data. And I talk a lot of, okay, what data point are we looking at now? How can we get more data points to make things as objective as possible? But then there's that element that you cannot, it's not objective. There's always a subjective, there's always this gut level,

Abigail Johnston (40:32.334)
clinician level, you know, this is rising to the top for whatever reason. And the longer I've seen doctors, the more willing they are to walk through all of those steps. But it takes a while to get them to become some. Some of them are fine to do that from the beginning, but some of them, it takes them a little while to work up to that.

The Patient from Hell (40:53.436)
You and I show up incredibly similarly, very, very similar. I do the exact same thing. Anytime I know there's a big decision it's a, here's what guidelines, like for me it's like, because I'm in early stage settings, guidelines plays much, much bigger of a looming presence because all the time, anytime you have to deviate, it's a whole thing to deviate in early stage settings. So for me, it's like, here are the guidelines, here's the trial, here's the inclusion criteria.

Abigail Johnston (40:58.55)
Hehe

The Patient from Hell (41:19.972)
It's exactly the same thing. It's bullet by bullet by bullet and it's sent before the appointment, sometimes a couple of days before, and if there's a tumor board and I know what's going up in tumor board, it's the like send it a couple of days before tumor board. Because sometimes it's not even the oncologist call if it's a massive deviation, sometimes it's tumor board. So it becomes this like, that's why I keep saying multi-party because sometimes, sometimes.

The conversations happening between you and the oncologist and the reality is oncologist is having conversations with other oncologists, especially in cases where it's complicated. And very often, sadly, internal hospital politics kicks in. So what does the department chair say about that case? So sometimes it's about enabling that oncologist to have enough data to talk to

Abigail Johnston (42:03.222)
Yes, yes.

The Patient from Hell (42:08.732)
the chair and it becomes this like fascinating, it's fascinating intellectually it's fascinating to me but as a patient it's like, oh, ow, that's a lot of work. It's a lot of work.

Abigail Johnston (42:20.874)
It really is. And I guess maybe the benefit of being medicine.

Abigail Johnston (00:02.786)
So I'm on my seventh line of treatment now, and in the metastatic setting, there are things that proved in the first or second, maybe sometimes the third line, but they don't really go beyond that. In fact, the presentation that I was part of at the San Antonio Breast Cancer Symposium last December was literally what happens after the CDK46 inhibitors, which are really the first line for most people who are metastatic. I've been on all three of them.

But once you get beyond kind of that first, second, third line, Dr. Stephanie Graf, who was the moderator for the session, literally said, it's a mess because there are all these meds and there are many different targets and there are different medications that different doctors like or don't like or familiar with or unfamiliar with. But sequencing those medications, you know, which one comes at the fifth line, sixth line, whatever,

that is anybody's guess. And so, you know, I think there are advantages when you're working within, here are the parameters and you've got to figure out, you know, do you deviate from the parameters? But it's an entirely different conversation and discussion when everything is completely gray. Pros and cons to both situations. But.

The Patient from Hell (01:19.609)
Yes.

The Patient from Hell (01:25.591)
That's actually why I was surprised that our styles were so similar. Because you're working in very, very different sets of data as well. One is very data rich. There's plenty of evidence to say this versus that, and the arguments are mostly about whether you, the individual patient, falls into that criteria. Versus what I'm hearing from you is there really isn't data. For the lack of a better word, it's essentially guesswork

which is why the reliance on the five oncologists matters because it effectively is an opinion-driven, educated guess-driven decision-making process. And if you are in that world, you want diversity of opinions, and then it comes down to what you were saying in terms of subjective thought or your gut instinct because unfortunately there is not data. That's why I was surprised at the styles being similar because I was expecting it to be different.

But you heard you say what you said, I was like, wow, like that's...

Abigail Johnston (02:22.742)
Well, and part of that is the way that I think, right? I look for those data points or I look for those things that are somewhat more objective in order to feel more comfortable with the decision that I am making. But that's part of the reason why I do see, you know, one of my oncologists is very, very focused on research and that is primarily what she does. In fact, I think she only has clinic one day a week because research is the majority of what she does.

And she is incredibly data driven. But then my local oncologist who is actually writing the orders and where I go for my treatment, it's not that she doesn't want to do trials, but her practice is as purely a clinician. And so they look at and analyze things vastly, vastly different. But I appreciate having those two perspectives, which is also why I always tell people,

who are treated in a community setting, which is something like 80% of us, right? The vast majority of us are treated in a community setting. Now, mine is a breast specialist, but many people are treated by a generalist oncologist. But going to an NCI designated cancer center, going to somebody who is a little bit more immersed in research, it just means that their minds work a little bit differently. And whether that's training or whether that's just what they're immersed in, whatever it is.

Having those two different perspectives is incredibly valuable, but it does then put the burden back on me to take all of that information and synthesize it into a decision. And that is the piece that I think a lot of patients struggle with. Okay, I have all this information, I have all this data. Now what do I do with that? And I think having more than one doctor giving their analysis and how they arrived at the decision,

that's what I have found to be incredibly valuable along the way.

The Patient from Hell (04:28.259)
And that's honestly the precursor for our digital product, right? Like I can't remember if you've seen it or not, but we have oncologists we work with and they literally say things like, this is my brain on paper. This is my brain on a screen because this is how I think. And they actually feel kind of, it's kind of funny to watch an oncologist do that because you sort of see them lay it out. And it's this moment of like, that is my entire life on one screen.

Abigail Johnston (04:58.794)
Amazing, amazing!

The Patient from Hell (05:02.171)
It's really cool. I mean, I'm such a nerd. Sorry. I'm just a nerd. I like, it's cool for me. It's super cool because I'm like, huh, if we can do that, if you can truly capture an unconscious brain on a screen, how much easier would these conversations be? It's like, we're at the point. Can we just talk about this please? Because as a person, you actually contextualize it, the information, the symmetry that happens. Like.

Abigail Johnston (05:17.867)
It's huge.

Abigail Johnston (05:21.435)
Yes!

The Patient from Hell (05:27.615)
We're trying to level the playing field a little bit. So it becomes a little bit easier to like have these conversations and figure out where you're going next. Because just too much.

Abigail Johnston (05:37.27)
Yes. And I think that patients want that, like legitimately. I think most patients do want that. I think part of the problem is that it is so big that to try to take all of the research and the experience that all these doctors have, like you can't absorb that in one, especially when we're able to spend 10 or 15 minutes with our doctors. And so having that educational,

opportunity for people who want it, right? There are still always going to be those patients who just want to be told, this is what you should do and go on. And legitimately, I have no quarrel with those people because if that's what makes them feel comfortable, do that. I've never been able to trust any person enough to just do exactly what people say without asking a billion questions. And so, you know, I was never going to be that patient, but.

Having a tool that allows you to bite size the things that you really need to know, but yet also be able to see where you're going, I just think that is incredibly valuable.

The Patient from Hell (06:48.651)
we're working on. I'm looking out of the clock and you and I, not surprisingly, can talk for hours. I do want to start wrapping up but I want us to go a little bit more on the emotional side. If you're okay with that. I'm gonna say something, it most likely is wrong. And then I'd love for you to react to it. I'm almost certain it's gonna be wrong by the way, so please correspond.

Abigail Johnston (06:53.324)
Hehe

Abigail Johnston (07:14.51)
Hehehehehehe

The Patient from Hell (07:18.867)
I'd imagine that if I were in the seventh line of treatment, I'm balancing this really precarious emotion of hope, but a lot of uncertainty. And this is me imagining, if I were there, I'd be... I honestly don't know. But I think I would be swinging back and forth a lot. I'm just curious, what's your reaction to that? How do you... Are those the right emotions?

Abigail Johnston (07:48.954)
I think terror more than uncertainty. When you are told that you have a diagnosis that's going to end your life, there's a process that everybody goes through in terms of how do you live your life with that? There's many metaphors. The sword of Damocles is kind of the thing that resonates the most with me. There's literally something hanging over your head

that could drop and decapitate you at any point. And learning to live with that hanging over you, I don't know if you ever watched Dexter, you talked about having a dark passenger. That also kind of resonates with me, right? Maybe a little less on the psychopath side, but just, you have this piece of who you are, because cancer is ourselves that went haywire, but you have this thing inside of you

that literally could end your life at any moment, but yet you're still alive and you still are living your life or trying to live your life at the same time. And so carrying those two very, very different things, I think ambivalence is another word that kind of comes to mind, right? You're having to live your life with these two very, very different perspectives or emotions and they're there all the time. And so, you know,

I think one of the things that I always tell people is certainly my coping mechanisms that I had up until my diagnosis were not up to the task of dealing with something like this. And so pretty much immediately I engaged with a psychiatrist. I've been on various mood stabilizing medication pretty much the whole time that since my diagnosis. I think that has been incredibly helpful –

to not have as many of the high highs and the low lows, right? I mean, because there's that roller coaster of emotions that's always there. And so, you know, I think that's been a hugely helpful part of things. Engaging with therapists who have some realm of understanding of this is very helpful. You know, I...

Abigail Johnston (10:04.558)
You can't just say, go seek out therapy because not all therapists are created equal. You're not gonna connect with all therapists, that sort of thing. And so finding people who have an understanding of what it's like to live with a serious diagnosis can be very, very helpful. But I think the number one thing that has helped me along this whole time of my diagnosis, I really don't enjoy the word journey for this because journeys are things that are fun. This is not fun, right?

Is connecting with other people with the same diagnosis. And so whether that's in online support groups, whether that's in the more personal meetings, that sort of thing, but connecting with other people who are living with the same diagnosis, because when you have something like this, you are out of step with everybody else in the world. And being able to talk to other people who you say,

Thaselidx and they know exactly what it's like to be on Thaselidx. You say chemo brain and they know exactly what it's like to have to deal with that. So that has really been, I think, yes, all those other things are good and helpful and finding good supportive doctors and the palliative doctors has been super helpful, that sort of thing. But in terms of emotional support and in terms of really being able to connect with other people.

That has probably been the best thing that I have done. Not to say that any of it's easy. There are those dark nights of the soul on regular occasions. And certainly as I get farther into my treatment, it means there are less options. Because we are only alive so long as there are medications available to us. And this last round of decisions, I have run out of oral options.

So initially I was able to be on oral medication pills that meant that I was not tied to the infusion center. That meant that I didn't look like I was sick. I mean, you know, I try to explain the diagnosis and people are looking at me like I have multiple heads, but being tied to the infusion center, knowing that the next lines of treatment that I have available to me.

Abigail Johnston (12:25.05)
are all medications that are going to make me pretty miserable for at least, you know, some amount of time. I mean, every IV medication is, is a challenge. Um, that is a sobering reality that everybody has to face in one way or another in our community. And, um, not going to say it's easy because it's not.

The Patient from Hell (12:49.438)
I am.

I don't even know how to respond to that. Because it's something so.

The Patient from Hell (12:59.859)
tethering about knowing that effectively you're tied to the infusion center.

Abigail Johnston (13:05.046)
That from a quality of life perspective, that's huge, right? I mean, you can't just pick up and go on a vacation without checking to see like where you are in your cycle. And I took a trip recently with some other people living with the same disease and it was the week after my infusion. And I couldn't have traveled with anybody else because they knew,

that I needed to take a nap and I needed to go to bed early and I was not going to be able to help with the food preparation and everything else. Like that was, those were my people. I could travel with them and everybody understood that the two of us that were coming off of treatment were not going to be as functional as everybody else. That's why I'm saying being in the community is so valuable because we have a different level of empathy for one another. And...

My husband laughs at me sometimes because my kids are in soccer and I'm sitting next to a soccer mom and I'm talking away and then I'm realizing she's getting increasingly uncomfortable and I'm like, oh, I just like totally overshared about all these medical things because that's my world now and that's what I'm used to. So that's the whole you feel out of step with other people who are not interested in the minutia of your blood work and why your hemoglobin is down or might go up or what you're doing about your red blood cells. Anyway, it's just...

It's a whole other level of intimacy that I have found in the NBC community with a lot of other people.

The Patient from Hell (14:34.119)
Have you read Estelle Perel?

Abigail Johnston (14:36.352)
I'm sorry.

The Patient from Hell (14:37.363)
Have you read any of Estelle Perel's work?

Abigail Johnston (14:40.238)
Oh, I don't think so, no, but maybe.

The Patient from Hell (14:42.919)
I'll send it to you. And I will use that as a wrap up because I think it really captures what you're talking about. So her parents were part of the World War II German Holocaust. And one of them was a survivor and ended up coming to New York and was part of the community that was post-World War II in New York. So she grows up as a psychologist. And she writes a lot about...

Abigail Johnston (14:49.183)
Okay.

The Patient from Hell (15:11.455)
traumatic disorders, right? And how the cancer stuff is not exactly PTSD, but it sort of falls in the same sort of general umbrella. So she actually does write a lot about medical related trauma. And she draws this parallel where there's this like new refugee community. And she's a child in the kitchen, and these are all parents playing a board game on like a Friday night or something. And they just say these things between these.

between each other, oh I was at like this place or I was at that place, but in that shorthand is communicated the vastness of the terror that they've gone through. But it's shorthand. It's actually not this long descriptive exploration of trauma, but it's shorthand and I find that to be such a similar analogy to what I see playing out in the

in the broad cancer community and then within the broad cancer community, even in breast cancer, right? The community that you're belonging to right now and the one I belong to are actually not the same. The MBC community is very different. The Matavibha community is different because they're dealing with a very different set of data, experiences, emotions than the early stage breast cancer community does. And there is a shorthand. And I...

Abigail Johnston (16:12.074)
Right, you're absolutely right.

The Patient from Hell (16:31.267)
One, I'm amazed at how individuals living with those types of trauma are able to communicate using shorthand. I think it's just, I think it enables a you belong, you belong.

Abigail Johnston (16:45.046)
Yes, you're absolutely right. Yeah.

The Patient from Hell (16:46.011)
why is it different? And anyway, so she writes about it and I love her style. So I'll send it to you.

Abigail Johnston (16:51.626)
Oh, that would be amazing. That sounds really amazing. I do think that there's an element of medical PTSD when you're having to access the medical system as much as we have to. And again, that vulnerability, you're dependent on a system that is broken to stay alive. It is a very unsettling feeling.

The Patient from Hell (17:13.551)
I have so many quotable quotes from this episode. It is, I can write a book on it. Thank you. Thank you for being a part of our podcast. Thank you for honestly validating the experiences of so many others. I am sure who are going through various, various versions of what you're describing. And I really, really appreciate you sharing everything. So honestly, so thank you. Of course, anytime.

Abigail Johnston (17:15.714)
Hehehehehe

Abigail Johnston (17:37.154)
I appreciate the opportunity. Thanks for inviting me.