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Just Cut It Out Podcast | Inflammatory Breast Cancer, Identity & Learning to Let People In · Just Cut It Out Podcast

0:01
SPEAKER_01: I'm Dr.
0:02
SPEAKER_01: Kim Brown, and this is just kind of out where we talk about how the experience of a cancer diagnosis has made people think differently about what it means to them to live a good life.
0:16
SPEAKER_01: Each episode, we cover a little bit of practical wisdom and a little bit of big picture.
0:22
SPEAKER_01: What does this all mean through conversations with patients, their families, and teams who take care of them?
0:32
SPEAKER_01: Welcome.
0:33
SPEAKER_01: I'm Dr.
0:33
SPEAKER_01: Kim Brown, and this is Just Cut It Out.
0:36
SPEAKER_01: Today, my guest is the Honorable Susan M.
0:38
SPEAKER_01: Gordon, an amazing woman, one of the most inspiring patriots I've ever met.
0:43
SPEAKER_01: She had a successful career in the intelligence community, culminating with her role as Principal Deputy Director of National Intelligence.
0:50
SPEAKER_01: After that, she had experienced a diagnosis of inflammatory breast cancer, which we're going to learn a little bit about, and also hear about how she's navigated side effects of treatment and talk a little bit about identity.
1:03
SPEAKER_01: So thank you for joining us.
1:05
SPEAKER_01: Welcome, Sue.
1:06
SPEAKER_00: Hey, Dr.
1:07
SPEAKER_00: Brown.
1:08
SPEAKER_00: Welcome.
1:08
SPEAKER_00: Good.
1:08
SPEAKER_00: I'm I'm glad to see you in this circumstance.
1:11
SPEAKER_01: Yes.
1:12
SPEAKER_01: And that's an interesting comment.
1:14
SPEAKER_01: We see each other in many different contexts.
1:16
SPEAKER_01: And this time I'm not poking, prodding, or cutting on you.
1:19
SPEAKER_00: Exactly so.
1:20
SPEAKER_01: Fantastic.
1:21
SPEAKER_01: Well, welcome.
1:22
SPEAKER_01: Thanks for being here today.
1:23
SPEAKER_01: Delighted.
1:25
SPEAKER_01: So we have so much we could talk about.
1:26
SPEAKER_01: This could easily be an eight-hour episode.
1:28
SPEAKER_00: It's not?
1:29
SPEAKER_01: It's not going to be, no.
1:31
SPEAKER_01: Um, but let's start with how it all began before I knew you.
1:36
SPEAKER_00: Yeah, I um you started out really well.
1:39
SPEAKER_00: Um, as almost everything in my life starts with this sentence.
1:43
SPEAKER_00: There I was minding my own business when, and in this case, I was 66, so this is February of 25, um, post-menopausal.
1:56
SPEAKER_00: Um, and I noticed that my right breast was inflamed.
2:00
SPEAKER_00: And I thought, I don't know that people my age get mastitis.
2:06
SPEAKER_00: And that was the closest analog that I had to it.
2:09
SPEAKER_00: And so I thought what I'd do is to play the better or worse game.
2:12
SPEAKER_00: In other words, it's a cyst and it'll relieve itself, or it won't.
2:18
SPEAKER_00: And after two weeks, it didn't get better.
2:21
SPEAKER_00: So I decided I should take myself into a hospital.
2:25
SPEAKER_00: And I have a lake house in north of Houston, and I was driving to that, and my daughter happened to call me.
2:32
SPEAKER_00: I know that's so interesting.
2:34
SPEAKER_01: You're on your way to an emergency room.
2:36
SPEAKER_01: I am because your breast is swollen, painful, and red.
2:40
SPEAKER_00: Yes.
2:41
SPEAKER_00: And um, I don't know.
2:44
SPEAKER_00: There's like two stories through my journey.
2:47
SPEAKER_00: One is um incredibly good fortune, and the other is incredibly bad luck, right?
2:55
SPEAKER_00: And and so it's really interesting to me.
2:57
SPEAKER_00: And so this is a great story.
2:58
SPEAKER_00: So my daughter calls me and she says, Hey mom, what are you doing?
3:01
SPEAKER_00: Interestingly enough, I decided to tell her.
3:04
SPEAKER_01: Um you mean you might have otherwise minimized your symptoms and not let somebody know that you are experiencing anything other than your best life?
3:12
SPEAKER_00: Yes, ma'am.
3:13
SPEAKER_00: Oh, Sue Gordon.
3:14
SPEAKER_00: Yes, ma'am, as you have discovered.
3:16
SPEAKER_00: As I have discovered.
3:17
SPEAKER_00: This is and and we'll probably talk about this.
3:20
SPEAKER_00: This turns out to be something that I find helpful and is not always helpful.
3:27
SPEAKER_00: Um, but on this day I decided to tell her, and she said, Well, hey, mom, um, you were gonna come down to Austin for my son's birthday.
3:37
SPEAKER_00: Why don't you just come down to Austin now and we'll go find someplace together?
3:42
SPEAKER_01: And your daughter is seeing this through a unique lens.
3:46
SPEAKER_01: She's she's has some experience that would maybe inform her that going to a rural ER isn't the right place for you to be.
3:54
SPEAKER_00: Yeah, it's it's there were a lot of things about that.
3:59
SPEAKER_00: One, um, she's a medical student at Dell Medical School, and that comes into the good fortune part of my story.
4:06
SPEAKER_00: Um, also, the hospital I was going to was the hospital where my husband had just a year earlier um been admitted.
4:13
SPEAKER_00: And I think in Casey's, in my daughter's mind, she was like, Oh, oh, you're not going there.
4:19
SPEAKER_00: And um, so I turned around and drove to Austin.
4:22
SPEAKER_00: And by the time I got to Austin, um, she had called her mentor at uh Dell Medical School, happens to be one Kimberly Brown that I'm sitting in front of, and said, Dr.
4:33
SPEAKER_00: Brown, where should I take my mom?
4:34
SPEAKER_00: And she said, You should bring her to my clinic on Tuesday.
4:37
SPEAKER_00: And that's what we did.
4:40
SPEAKER_00: Um I we could talk about, you know better than I, that with what turned out to be inflammatory breast cancer, so massively inflamed, sore, red.
4:50
SPEAKER_00: In my case, it had relieved itself.
4:52
SPEAKER_00: My cancer decided to leave my body all by itself.
4:56
SPEAKER_00: Um and I'd never seen so this wasn't a lump.
5:00
SPEAKER_00: This wasn't like you think breast cancer is going to manifest, right?
5:05
SPEAKER_00: It wasn't that I'd felt a lump in my breast.
5:07
SPEAKER_00: This was it, it just, and I think I had even told my daughter, well, I'm sure it's not cancer.
5:13
SPEAKER_01: And that is the challenge of inflammatory breast cancer.
5:15
SPEAKER_01: It can happen to a woman of any age.
5:17
SPEAKER_01: Obviously, you're more in the age range of the average age for cancer, but I've seen it in women who are in their 30s and everyone says, Oh, red, swollen, tender, it's an infection.
5:29
SPEAKER_01: So then they get antibiotics, and then they get more antibiotics.
5:33
SPEAKER_01: And that can delay the diagnosis and the treatment of the cancer and allow it time to spread.
5:38
SPEAKER_01: So, as you said, there's many uh parts of your story that are fortunate that were where you had good fortune and your cancer did not let you sort of ignore it.
5:50
SPEAKER_00: It you're draining fluid out of your breast.
5:53
SPEAKER_00: I I did.
5:53
SPEAKER_00: It was it my body was taking action.
5:56
SPEAKER_00: And and so I come to your clinic and um it was obvious that that I was in trouble.
6:06
SPEAKER_00: And so um, and I didn't live here.
6:09
SPEAKER_00: I had a lake house here, I was visiting here, but I lived in Virginia, and so you kind of leapt into the fray and did some quick work on the table that day, I think in your clinic that day.
6:21
SPEAKER_01: We did a biopsy because there was a nodule.
6:24
SPEAKER_01: So um the cancer was spreading through the lymph channels in the skin and setting up shop in in little sites uh distant from where it started.
6:35
SPEAKER_01: So we did a biopsy of that, and then we tried we put a drain in to try to control the fluid so it wasn't just soaking your bra and shirt.
6:42
SPEAKER_00: Yep.
6:43
SPEAKER_00: And so you um And then I recall I went on spring break.
6:48
SPEAKER_00: You went on spring break, but you also packed me up with with some test results from those things that you did and sent me back to Virginia where I had anticipated, because that's where I lived.
6:58
SPEAKER_00: I'd lived there for 40 years, um, and I didn't want to bother my children if this was going to be bad.
7:06
SPEAKER_01: I I think I called you from a ski lift uh to tell you the results, and there might have been a four-letter word.
7:15
SPEAKER_00: I think that was the first word you said.
7:18
SPEAKER_00: I think I answered, I think I answered the phone, you said, Hi Sue, this is Dr.
7:21
SPEAKER_00: Brown, and I said, Hi, Dr.
7:23
SPEAKER_00: Brown, and I'm pretty sure you said well F.
7:27
SPEAKER_00: Right?
7:27
SPEAKER_00: And and I I guess I want to stop there for a second.
7:31
SPEAKER_00: I I don't know how you knew after one visit with me who I was.
7:39
SPEAKER_00: For me, that was exactly the right way to get me into the moment and into the journey that I was gonna have.
7:53
SPEAKER_00: It it for me, I was like, then okay.
7:59
SPEAKER_01: Yeah, I definitely don't use F-words with every patient, but I did get a sense of who you are when I met you and your style, how you were needed to be in a in almost a warrior mindset.
8:14
SPEAKER_01: And and that's kind of what some people need is we're we're gonna use swear words and we're gonna go fight this.
8:23
SPEAKER_01: And and some people it takes a little more time to process the shock and the grief and and all of that.
8:29
SPEAKER_01: So I I got lucky, I guess, that I pegged you correctly.
8:33
SPEAKER_01: And you had to then get more imaging studies, some staging studies, um, to to have everything that would be needed to make a treatment decision.
8:44
SPEAKER_01: And my team worked really hard to get all of that done.
8:48
SPEAKER_01: It's so hard to call and get this PET scan scheduled and this MRI scheduled and in a timely fashion.
8:57
SPEAKER_01: And my expectation was that you would be treated in your home because you said that is where you felt you had support.
9:04
SPEAKER_01: And so we sent you off.
9:06
SPEAKER_01: And then and what happened then?
9:08
SPEAKER_01: You you met with a um you met with a physician team in Virginia?
9:14
SPEAKER_00: Yeah, we didn't I think we knew enough to know it was serious.
9:19
SPEAKER_00: I don't think we knew everything, but we we knew that we were into it.
9:22
SPEAKER_00: And so I I went to a uh uh in Northern Virginia, out just outside of DC, a very well recognized cancer center where many of my friends had been treated before, and so I felt like I was in good care.
9:35
SPEAKER_00: And I met with um, as you often do, a surgeon is your first portal uh to treatment.
9:43
SPEAKER_00: And uh my daughter came with me, and my son was with me on FaceTime, and it it just became clear that she wasn't the right surgeon for me, and and and she may have been the right surgeon for somebody else, but for me she was more worried about aesthetics.
10:05
SPEAKER_00: Well, I'm a 66-year-old woman who had a pretty good grasp of what I was facing.
10:11
SPEAKER_00: That was not my concern at this moment.
10:16
SPEAKER_00: And she was uh had a very protracted uh vision of how long it was gonna take to see an oncologist.
10:25
SPEAKER_00: And we knew enough from that first set of information that this was something.
10:30
SPEAKER_01: You had a triple negative inflammatory breast cancer, and chemo was going to be your first stop.
10:35
SPEAKER_00: It was.
10:36
SPEAKER_00: And so taking another month to get to starting chemotherapy just seemed wrong, but it it wasn't that I knew anything about the actual protocol.
10:46
SPEAKER_00: It was that it didn't seem that they saw my case and me.
10:53
SPEAKER_00: You know, how are you thinking about this?
10:55
SPEAKER_00: So we walked out, I remember we walked out of that that meeting, and my children um we gathered for a cup of coffee and they said, Mom, we want you to come to Texas.
11:06
SPEAKER_00: Yeah, so you've got one in Austin and one in Houston.
11:08
SPEAKER_00: Right.
11:09
SPEAKER_00: And and so I came to Texas and it turned out to be uh and then with your recommendation.
11:16
SPEAKER_01: I tried to get you to go to Anderson, as I recall, and I set you up with another option in town.
11:24
SPEAKER_00: Yeah, so that was really interesting.
11:27
SPEAKER_00: I had forgotten that until you mentioned it.
11:29
SPEAKER_00: So I'm like I'm old and I've done a lot of things, so I know a lot of people, and so one of the difficulties I had was everyone wanted to help, and everyone wanted to tell me where I should go and who I should talk to, and I should go to Duke because they have an inflammatory breast center.
11:46
SPEAKER_00: And I went to Duke, and so that's a home, or someone else who knows someone at Sloan Kettering and other places in MD Anderson.
11:55
SPEAKER_00: Um, and I can't remember someone in your practice.
12:01
SPEAKER_00: It was in one of the first days, and I'm trying to sort out all these people who want to help me, who tell me I need to go to the best place.
12:08
SPEAKER_00: And all I'm thinking is the clock's ticking.
12:11
SPEAKER_00: And someone uh here said the the truth is you just need to start peddling.
12:18
SPEAKER_00: And that's kind of how we decided as a collective, and it felt to me like we decided that the that the best path for me was a local oncologist and life was a very good fit for you.
12:32
SPEAKER_00: I was just gonna say, weirdly, um, just like you, um, I need someone who will see past the chaff I throw up and will call me on on my BS.
12:53
SPEAKER_00: And you saw that right away.
12:56
SPEAKER_00: This oncologist also did that.
12:58
SPEAKER_00: And by the time I see here, we have more data.
13:02
SPEAKER_00: And we know that this is this is a sporty case.
13:06
SPEAKER_00: And she said something to me early on that turned out to be as we tell the rest of my journey, she said, Sue, we're just gonna get going.
13:15
SPEAKER_00: Oh, I remember I saying, can I wait a week because I have a meeting?
13:18
SPEAKER_00: And she said, Sue, I don't think you understand this is what's important in your life.
13:23
SPEAKER_01: Yeah, there are times when we say, absolutely, we can wait for this important event or that, but not in your case.
13:31
SPEAKER_00: So if you think about just now that time becomes urgent, think about all the great things that happen to minimize time.
13:36
SPEAKER_00: Case calls, I don't go to Winnie R, I don't take antibiotics, just all sorts of things happen.
13:41
SPEAKER_00: But the other thing she said to me, Dr.
13:43
SPEAKER_00: Brown, was she said, um, I don't know how this is gonna go.
13:49
SPEAKER_00: So we're gonna just throw what we think at it, and it might not all work, but we'll just figure something else out.
13:57
SPEAKER_00: So just I don't want you to get too wedded to any plan I tell you, because we're gonna deal with something.
14:02
SPEAKER_00: And for me, it's it's like that became throughout my journey, my lifeline.
14:09
SPEAKER_00: Like every time I wanted to be disappointed because my blood cell counts didn't let me continue with chemotherapy and I wanted to be mad at it, I remembered that she told me this is just the way my journey is gonna be.
14:22
SPEAKER_01: And I want to make a point there that if if a patient were to get a true informed consent, and this will become clear as we talk about your particular journey of what could happen.
14:36
SPEAKER_01: I think there'd be more patients who say, No, I'm not going to take treatment, because there are some really bad things that can happen.
14:45
SPEAKER_01: And I think as physicians, our job is to give information so that patients can make decisions, and that's a fine line between withholding information because I understand it's not going to be useful, but still being able to convey enough that this that the patient is truly making an informed decision.
15:08
SPEAKER_01: And for the surgery part of breast cancer, that's not as crucial.
15:12
SPEAKER_01: But for the chemotherapy, what she told you is there are a lot of side effects that could happen, and we don't know which ones you're going to get.
15:21
SPEAKER_01: And we're gonna start with a plan, and we may have to alter it based on what happens, how your body responds, how your cancer responds.
15:28
SPEAKER_01: And and she's a gifted clinician, and I think she did a great job of conveying what you needed to know without overwhelming you with all of the things that could, all of the details of what could happen.
15:45
SPEAKER_01: Um, and I'm just gonna say that as a doctor, that is a really hard line to walk.
15:51
SPEAKER_01: Um, you never want your patient to come back and say, But you never told me this could happen.
15:56
SPEAKER_01: On the other hand, if the patient is so scared by what you've said that they're not willing to take treatment, then that's not a success necessarily either.
16:05
SPEAKER_00: So I played uh uh college sports.
16:09
SPEAKER_00: I always felt like we had a team.
16:12
SPEAKER_00: And I think sometimes the power, not power, knowledge differential is so great between the patient and the doctor.
16:21
SPEAKER_00: And power in the way of man, I'm depending on that knowledge that there can there can be either too much trust or too little trust.
16:31
SPEAKER_00: In certainly with you and also with my oncologist, it felt like we found a place that you all I felt understood how fierce and brave I was willing to be.
16:53
SPEAKER_00: And that allowed, this is what I felt, you to say, okay, you're gonna have to be.
17:00
SPEAKER_00: And and and and I, you know, I'm I'd love to talk as we go through this and ask a question for you because I think that's a really interesting question of how you know that and how you find it over the course of the relationship that's built.
17:16
SPEAKER_00: Because while I think I would have loved if if it had been a short relationship, this one, this one is a long one.
17:24
SPEAKER_00: And how did we find our way there?
17:26
SPEAKER_00: Um, but that was for me, that was really good.
17:29
SPEAKER_00: But I think my big takeaway is it will work for me, it worked really well to have a team that that I trusted and that matched my energy.
17:41
SPEAKER_01: And so chemotherapy started chemotherapy with immunotherapy, which is how typically triple negative breast cancers are treated.
17:51
SPEAKER_01: And at the beginning, you had some of the typical side effects, you had fatigue, you had low blood counts.
17:58
SPEAKER_01: And then and then one day you were minding your own business.
18:02
SPEAKER_00: I was minding my own business.
18:05
SPEAKER_00: I was coming home from interesting, uh, a round of chemo that didn't include immunotherapy.
18:13
SPEAKER_00: And I just I felt what I thought was the way I normally felt.
18:18
SPEAKER_00: And uh the person that my sister had been with me that day, and I said, listen, I'm just gonna run upstairs and go to bed because I know what I have to do now.
18:26
SPEAKER_00: I need to take my drugs, I need to jump into bed, I need to staple my pillow to my head to the pillow, and it'll be better in three hours.
18:35
SPEAKER_00: Um, and in three hours, I was pretty much out of my mind.
18:39
SPEAKER_00: And with some good luck, um uh some people called to check on me, and I was obviously not well, and my daughter was one of them, and I had a really high fever, and I was not doing well, and she called her mentor, who also happened to be my surgeon, even though this was not a surgical problem.
19:03
SPEAKER_01: And I talked to your oncologist, and again, as the team, we made a decision about which hospital to admit you to.
19:09
SPEAKER_01: We wanted to have you closer to me and and our team.
19:14
SPEAKER_01: Um you had a fever, uh, you still had a red breast.
19:18
SPEAKER_01: And uh for the surgeon, that that's infection until proven otherwise.
19:24
SPEAKER_01: You had uh low white blood cell count uh from chemo, and so our top uh concern was that you had some kind of infection that we we didn't know where.
19:34
SPEAKER_01: So lots of tests, lots of physical exam, looking scans to see where this infection might be, and we couldn't find it.
19:43
SPEAKER_01: And you were you were not yourself.
19:47
SPEAKER_01: You when you say you were out of your mind, you were not the Sue Gordon, the fierce, witty, always have a snappy comeback, ready for a witty reparte.
19:58
SPEAKER_01: Yes.
20:00
SPEAKER_01: And I um had you admitted to me as a surgeon, and and I needed help.
20:06
SPEAKER_01: And sometimes it's hard.
20:08
SPEAKER_01: Uh in our training, we're expected to know the answers.
20:11
SPEAKER_01: I didn't know what was going on.
20:13
SPEAKER_01: Um, so I called for help from some colleagues, and it turns out that you were having an autoimmune reaction that where your body was starting to attack the lining uh around your brain.
20:25
SPEAKER_01: You had encephalitis.
20:28
SPEAKER_00: I did.
20:29
SPEAKER_00: Um yeah, it was funny to be not myself, but watching this go on, and now you have teams of people coming in and they're trying to figure it out.
20:39
SPEAKER_00: And I think the most interesting thing to me, and probably the coolest takeaway I had, is there was a moment when it felt to me, and you can clarify this, where you thought you knew what was going on, but you didn't have the time to be absolutely certain.
20:59
SPEAKER_00: And so you had to make a decision about how you were going to treat me.
21:03
SPEAKER_00: And it was really interesting to watch that go on and to know that there was some uncertainty.
21:08
SPEAKER_00: And some of the things that you decided to do were not things that were perfectly wonderful.
21:15
SPEAKER_00: You know, you decided to give me steroids, and steroids weren't what you would typically give to someone with an infection.
21:21
SPEAKER_00: With an infection, yes, because it suppresses that.
21:23
SPEAKER_00: And so I I guess I walked away from that moment, and we can talk about the effects of it, but that's when I realized that medicine is a decision not always with perfect knowledge.
21:37
SPEAKER_01: And you recently served as the commencement guest speaker for your daughter's graduation, which was pretty cool on so many levels.
21:47
SPEAKER_00: On so many.
21:48
SPEAKER_00: So many levels.
21:49
SPEAKER_00: Like I'm here, and I got to do that, and I got to share some of this experience and perspective with them.
21:55
SPEAKER_01: And so not only were you the proud mom of a graduate, um, and not only were you A patient who received care in the system that your daughter worked in, but you made that connection of medicine and intelligence both requiring a person or team to make high-stakes decisions with imperfect information.
22:18
SPEAKER_01: And I am been really aware of that in my training and my practice, that that's something that not everyone is comfortable doing.
22:27
SPEAKER_01: And one of the things you see is medical students go through their different rotations and decide do I want to be an internal medicine doctor, pediatrician?
22:36
SPEAKER_01: You know, the the nature of surgery and the difference of when we make a decision, we are cutting someone open and you can't take that back.
22:46
SPEAKER_01: It's very visible and real.
22:50
SPEAKER_01: And you have to be able to do that with your knowledge that you could be wrong and do everything you can to minimize the chance that you're wrong.
22:58
SPEAKER_01: But in the end, sometimes you have to make a decision.
23:00
SPEAKER_01: So I just thought that was such a beautiful third thread of your remarks that that you you understand what we do from a unique but very similar perspective.
23:13
SPEAKER_00: Yeah, I remember I I think I remember you will know better whether I actually did.
23:23
SPEAKER_00: Um not wanting you uh for some reason not wanting steroids.
23:29
SPEAKER_00: And and just in my head, I'm like, you need to know more or don't do it, or something like that.
23:33
SPEAKER_00: And I and you all patiently explained that we needed that it was the right thing to do.
23:40
SPEAKER_01: And so I go back to having the right team and having enough conversations with your doctors that you can have that trust because I remember just as a human in that moment, it I'm sure listening to us talk like that where we're not sure and we're discussing back and forth about the pros and cons had to not really um engender a lot of faith in in this process, but it it worked out, and I think you have an example of someone you know who had a similar situation where they made a different they they waited to till they knew, and it didn't turn out as well.
24:14
SPEAKER_00: So I don't know, it just for me that moment was one that gave me some clarity and it was horrifying, and I was grateful, and all those emotions at the same time, and maybe that's one of the things that if I could offer something is you'll have them all and and you'll you'll be angry sometimes and you'll be worried sometimes and you'll be brave and you'll be certain and all those things at the same time.
24:40
SPEAKER_00: Don't be afraid to share those because I think you all probably experience I'm not very good at at hiding emotions.
24:46
SPEAKER_00: I may be good at hiding symptoms, but I'm not good at hiding emotions.
24:50
SPEAKER_00: And I think you all saw that and helped me through it.
24:52
SPEAKER_00: But anyway, we so we get through that.
24:56
SPEAKER_00: I walked out of the hospital.
24:57
SPEAKER_00: No more immunotherapy for you.
24:58
SPEAKER_01: No more in it.
25:00
SPEAKER_00: Yeah, it's the gift that I've learned.
25:01
SPEAKER_00: It's the gift that keeps on giving.
25:03
SPEAKER_00: It turns out that that's an effect that can now happen to me for the rest of my life, even though I'll never take that drug again.
25:10
SPEAKER_00: And I didn't know that.
25:12
SPEAKER_00: I don't know that had I known it with the specificity, that it would have said, well, then I'm not gonna do it.
25:18
SPEAKER_00: Because at that moment early on, I don't know that my doctor was saying that that was our best chance.
25:24
SPEAKER_00: And now not having that as a tool, my care is slightly different because that was her plan post-surgery and post-radiation to kind of prophylactically keep my cancer in check.
25:38
SPEAKER_00: And now we don't have that tool.
25:40
SPEAKER_00: So so we go we go through that.
25:43
SPEAKER_00: I recover, um, we finish chemotherapy, we get to surgery, yay.
25:51
SPEAKER_00: Um it turns out that even surgery is an adventure when you have inflammatory breast cancer because my skin and plumbing underneath presented some interesting challenges for you.
26:04
SPEAKER_00: Sorry about that.
26:06
SPEAKER_01: It it comes with the territory, and you know, nobody no surgeon likes to have their wounds not heal perfectly.
26:13
SPEAKER_01: Um and it is easy to blame the disease.
26:17
SPEAKER_01: Uh we surgeons tend to blame ourselves, not not the disease.
26:22
SPEAKER_01: Um and it it's it was hard that it took you longer to heal than uh than it should have, but I we got you started with radiation and your skin just had to had to do its best, and we took good care of your wound.
26:35
SPEAKER_00: And yeah, I'm sitting here you are.
26:37
SPEAKER_00: I'm I'm sitting here.
26:39
SPEAKER_00: The the thing that I probably didn't expect was that that autoimmune reaction was gonna be now what I deal with much more than than the cancer.
26:57
SPEAKER_00: And I think in conversations with my oncologists, it's it's so interesting.
27:04
SPEAKER_00: You were saying the way surgeons feel that they should be able to do everything perfectly notwithstanding what's going on in the body.
27:13
SPEAKER_00: Um my oncologist, I think she said to me, she said, because she doesn't like what I'm dealing with now, and we'll talk about it, but she said, you know, I wasn't sure that we were gonna get you to surgery, so I might have over-rotated on the chemo.
27:26
SPEAKER_00: And now I've got to do some cleanup on that.
27:31
SPEAKER_00: And and even that, having the relationship and having doctors that will say those things to you somehow allow it to be, or at least in me, allowed it to be okay.
27:43
SPEAKER_00: So so the after effects are um I I have to I have some adrenal issues and I take steroids to kind of keep my body functions in check and my gut doesn't work quite the way I want it to.
28:03
SPEAKER_00: And so that's much more dominant in my life right now than than cancer is.
28:10
SPEAKER_00: Would I would it have been better had I known that this was gonna happen?
28:16
SPEAKER_00: I don't know.
28:17
SPEAKER_00: I think it just goes to the other part of this journey, which is how you handle it.
28:23
SPEAKER_01: And that can change over time.
28:26
SPEAKER_01: Most people at the beginning of a diagnosis, their mindset is I will do whatever it takes to live.
28:33
SPEAKER_01: And that that's something I've seen with all different types of cancer.
28:38
SPEAKER_01: I will take the whipple operation and all the possible complications of that.
28:44
SPEAKER_01: I will take the chemo, I will take the immunotherapy, I want to live.
28:48
SPEAKER_01: There are some people who start the diagnosis more focused on I'm only willing to do so much, and then I would rather not, I would rather die than deal with uh having my quality of life or what makes me me impacted.
29:07
SPEAKER_01: But most people are like, bring it.
29:09
SPEAKER_01: I I want to live.
29:10
SPEAKER_01: So I think that it's hard to ask on this side of that what you would do looking back because you're just in a different place.
29:22
SPEAKER_01: And what happened to you was pretty extreme and rare.
29:25
SPEAKER_01: Many, many people come you are.
29:27
SPEAKER_01: Many people come through immunotherapy with no side effects or mild, but some of the common ones are affecting the endocrine glands, so the thyroid, the adrenals.
29:36
SPEAKER_01: Um the encephalitis is pretty rare.
29:38
SPEAKER_01: That's uh and just rude.
29:40
SPEAKER_01: And just rude.
29:41
SPEAKER_01: You know, it's take someone who's so smart and then knock her down.
29:47
SPEAKER_01: Luckily, you seem to have recovered cognitively.
29:50
SPEAKER_01: Mostly.
29:50
SPEAKER_01: That I can tell.
29:51
SPEAKER_00: My friends say, how can you distinguish it from just how old you are?
29:54
SPEAKER_00: So they don't put up with they don't put up with me blaming.
30:01
SPEAKER_01: It's exactly chemo brain or yeah.
30:04
SPEAKER_01: So but but this brings us into the the deeper question.
30:09
SPEAKER_01: So cancer side effects, you know, when with chemo, a lot of times the side effects stop or or they abate once the chemo is done.
30:19
SPEAKER_01: The immunotherapy can be more permanent.
30:22
SPEAKER_01: And I've watched many people struggle with the side effects, and there's certain struggles that are just their inconveniences.
30:34
SPEAKER_01: I I can't go to this event because my white blood cell count is low and I can't risk getting an infection.
30:41
SPEAKER_01: I had this trip planned that I have to cancel.
30:45
SPEAKER_01: But there's other effects that hit deeper, and I've I think understood this at a level that I wasn't able to articulate clearly until you and I had this conversation.
30:58
SPEAKER_01: So your side effects have fundamentally impacted you being who you are, your identity.
31:08
SPEAKER_01: And that is what makes it so hard.
31:12
SPEAKER_01: Tell me a little bit about that.
31:14
SPEAKER_00: Yeah, I'm so surprised by that.
31:17
SPEAKER_00: Even sitting here, I've thought about it a lot and talking to you again.
31:20
SPEAKER_00: I'm so surprised that this is true.
31:24
SPEAKER_00: Um, I don't know whether it's my identity, whether it's the story I tell myself, or whether it's actually true.
31:33
SPEAKER_00: But it turns out that part of what makes me me in my head and in my work is that I was always stronger.
31:47
SPEAKER_00: I could I could go longer.
31:50
SPEAKER_00: I could I could fit 28 hours into every day.
31:55
SPEAKER_00: If I needed to do something, I could do it.
31:58
SPEAKER_00: I I I basically could will myself to do anything, and not with like a but but just kind of a joyful, okay, I can do that.
32:08
SPEAKER_00: And that was part of who I was, and it's not part of who I enjoyed about myself and was proud of it.
32:16
SPEAKER_00: And with cancer, I couldn't, like I I decided early on that I cancer would be what I had, it would not be who I was.
32:34
SPEAKER_00: And so I just decided that I was gonna, because I could always do that, I could just keep going at that rate, and then I couldn't.
32:47
SPEAKER_00: And it was all fun and games when it was when I was in the visible soup that everyone could see that I was had lost my hair, and um I was doing chemo, and you could see those things.
33:06
SPEAKER_00: It was hard then for me to forgive myself for what I couldn't do.
33:09
SPEAKER_00: Isn't that a funny thing to say?
33:11
SPEAKER_00: It was me, I couldn't forgive myself.
33:14
SPEAKER_00: Like, how can you not, Sue?
33:16
SPEAKER_00: How can you not?
33:19
SPEAKER_00: And it and it was just like to my core, like no one was expecting me to do it.
33:23
SPEAKER_00: This was not something that I had bosses or boards saying, Oh, no, you have to show up.
33:28
SPEAKER_00: No, they were saying, please don't show up.
33:31
SPEAKER_00: But for me, to not I it's like I I just couldn't do it.
33:41
SPEAKER_00: So that and and then now that I'm in the quiet of not cancer and not those things, to have this that really does a periodically take away some of my will, like who am I?
34:02
SPEAKER_00: And did I ever need to be that?
34:06
SPEAKER_00: And was that really ever who I was, or was that just a story?
34:11
SPEAKER_00: And so trying to trying to accept that I'm never gonna get to be who I was, and you know that I'm now trying to do that mostly alone and dealing with another loss of identity is so vexing, but I will do it, and but I think where I am now is I've just gotta kind of figure out who I am now and let go of that.
34:48
SPEAKER_00: And if I and I know in my heart that if I can let go of that thing that was always a story I told myself, then I'm gonna be able to find something else.
34:58
SPEAKER_00: But man.
35:02
SPEAKER_01: And you do you do fit 28 hours into a day.
35:06
SPEAKER_00: Well, not as well as I did.
35:08
SPEAKER_00: I mean, and some of it's goofy, right?
35:11
SPEAKER_00: And I I think I laugh some of at myself sometimes.
35:14
SPEAKER_00: I started a podcast.
35:15
SPEAKER_00: Sometimes I laugh at you too.
35:17
SPEAKER_00: I it is clear, and again, evidence that I have the right friends and team around me.
35:23
SPEAKER_00: But I started a podcast for goodness sakes, when I when I'm in the in the middle of chemotherapy on the on the day I had a second incident that was a side effect.
35:38
SPEAKER_00: I think of chemo though.
35:39
SPEAKER_00: Wasn't that wasn't the the fever, the neutropenic fever?
35:42
SPEAKER_00: Wasn't that a side effect of chemo?
35:43
SPEAKER_00: Not auto- who knows what that was.
35:46
SPEAKER_00: I'd actually recorded an episode of my podcast, and my co-host was like, Sue, you look bad.
35:50
SPEAKER_00: And I'm like, eh, I'm all right.
35:52
SPEAKER_00: And then by that afternoon, I'm in the hospital.
35:54
SPEAKER_00: So that silly, on the other hand, at that point when I'm in the soup of it, I think it was important that I held on.
36:04
SPEAKER_00: Now that I'm here, I think it might be important that I find new.
36:09
SPEAKER_01: And so, how are you finding new?
36:12
SPEAKER_01: Where are you looking for this identity that is not I'm worthy, I am a person who works harder than everyone else.
36:31
SPEAKER_00: So I don't think there's anyone that loves living more than I do.
36:37
SPEAKER_00: And um, I'm not a dumb woman, and so I probably don't have the same 38 years more than I've anticipated having to live in.
36:54
SPEAKER_00: So I think what's helping me right now is to be more mindful that I don't have an infinite supply of me, and I don't have infinite time.
37:05
SPEAKER_00: And so let's make choices now that are not artifacts of who I was, but are rather choices of the circumstance that I have now, which let's just talk about it.
37:21
SPEAKER_00: I'm here, right?
37:22
SPEAKER_00: I have I'm in Texas, I my children live here.
37:28
SPEAKER_00: I've developed a whole new set of passions around actually health disparities because it sends me over the edge that because I'm a woman of resources, whether that is intellectual resources or financial resources, that there is I have more ease at getting to care than any other person.
37:48
SPEAKER_00: And that sends me the over the edge.
37:50
SPEAKER_00: And so now I have a huge passion around that.
37:54
SPEAKER_00: So I think that's what I'm trying to do is to say, what do I want to do with my time and resources that are not just continuing the things I did in the past.
38:10
SPEAKER_01: But boy, that's hard.
38:12
SPEAKER_01: So through asking those questions, you anticipate that the answer of who is Sue Gordon now will emerge.
38:20
SPEAKER_01: And I see it emerging.
38:22
SPEAKER_00: Yeah, I think the hardest thing is the other piece, you know, that are uh is in the category of you can't make this stuff up, a year before I was diagnosed with cancer, I lost my boyfriend and husband of 40-some years, who was my best friend.
38:43
SPEAKER_00: And even though I had this amazing career that I talk about a lot, it was just my day job, my life was my family.
38:52
SPEAKER_00: And so I had this picture of, and and I don't know what to do yet with the fact that I am both glad that he's not here because he would have hated me going through this.
39:13
SPEAKER_00: And I watched him go through cancer, and I'm here to tell you if you made me choose being the one going through it or the one watching someone I loved go through it, the one with it has the easier gig because I can do something with my energy.
39:31
SPEAKER_00: So I'm kind of glad he's not, but I haven't yet figured out how to be Sue without Jim.
39:41
SPEAKER_00: And so I think that's the big thing that still remains.
39:46
SPEAKER_00: Um kind of damn it, you guys have made me so healthy that I don't have a lot of physical worry, so I have this quiet to have to deal with the emotional piece of it.
40:01
SPEAKER_00: Because in a weird sort of way, I lost Jim and then I got cancer, so I never had to really deal with that quiet moment figuring out.
40:09
SPEAKER_00: So you've now healed me well enough that I have the quiet moment, but there are some struggles that you have to just wrestle that I'm wrestling through.
40:20
SPEAKER_02: One day at a time.
40:21
SPEAKER_00: One day at a time.
40:22
unknown: Yeah.
40:24
SPEAKER_01: Is there anything in particular that you have just cut out as a result of your diagnosis, your cancer journey giving you a lens uh through which you see what matters most?
40:38
SPEAKER_01: I mean, you're a woman who prior to cancer lived, like you said, a very intentional life or passionate about your family.
40:46
SPEAKER_01: But there had to have been something that and and maybe it is the the work and the pace.
40:53
SPEAKER_01: But I'd love to hear if if there's something else that you have just cut out.
40:59
SPEAKER_00: I think I've just cut out I have I have two fundamental flaws.
41:04
SPEAKER_00: I have a helping problem and I have an interest problem.
41:07
SPEAKER_00: And that is I if I can help, I want to.
41:11
SPEAKER_00: And if it exists, I'm interested in it.
41:14
SPEAKER_00: So and again, the Sioux story was I have enough of me to to satisfy all those things.
41:23
SPEAKER_00: I think what I've had to cut out and what I still struggle at cutting out is all the things I could do, I can't do.
41:31
SPEAKER_00: And so I think that's still a challenge for me.
41:39
SPEAKER_00: But I have to in order to be this person that I want to be now.
41:46
SPEAKER_00: Interesting.
41:47
SPEAKER_00: I didn't thought of this until you asked.
41:50
SPEAKER_00: You know what I've added?
41:53
SPEAKER_00: I've let people in.
41:56
SPEAKER_00: I know.
41:57
SPEAKER_00: It's so crazy.
41:58
SPEAKER_00: I was just part of my story was oh, I never want to burden you with anything.
42:04
SPEAKER_00: I don't, I don't want you to care about me.
42:06
SPEAKER_00: I mean, I I won't want to be in your life.
42:07
SPEAKER_00: I don't want to care about me because I'm fine.
42:11
SPEAKER_01: Um just something for someone who lived a fairly public professional life.
42:16
SPEAKER_01: I know I hate being you don't like being seen.
42:18
SPEAKER_00: I hate being seen.
42:20
SPEAKER_00: But part of it is I just don't want anyone to have to worry about that.
42:23
SPEAKER_00: I wanna, that's what I do, right?
42:26
SPEAKER_00: And somewhere, I think I saw some silly Hallmark.
42:34
SPEAKER_00: She couldn't have been Hallmark because it's way too intentional.
42:36
SPEAKER_00: Though I do love me some Hallmark movies, I do.
42:40
SPEAKER_00: Um uh there was about a woman with cancer, and along her journey, she closed everyone out such that she lost a lot of her friends because they couldn't get in.
42:52
SPEAKER_00: And I thought, wow, you're not really in a relationship with somebody if you're setting all the rules.
42:58
SPEAKER_00: And so in a really weird move, I decided to let people into my journey, and it's unbelievable.
43:07
SPEAKER_01: A lot of people love you, so a lot of people showed up, right?
43:11
SPEAKER_00: Yeah, and it's hard and awful, and I hate it, and it's wonderful, and it has sustained me.
43:17
SPEAKER_00: And so that's not something I've cut out, it's something I've added, but it has come at the expense of or willful expense of this facade of.
43:30
SPEAKER_01: No, I don't need anything.
43:32
SPEAKER_01: I'm good.
43:32
SPEAKER_01: I'm good.
43:33
SPEAKER_01: I'm good.
43:34
SPEAKER_01: Okay.
43:35
SPEAKER_01: Sue, would you like to ask me a question?
43:37
SPEAKER_00: Yeah, I think it's um, I do.
43:41
SPEAKER_00: What?
43:41
SPEAKER_00: Sue Gordon have a question to ask?
43:43
SPEAKER_00: Or 700?
43:44
SPEAKER_00: Um, but I do have one, and it's kind of predicated on the conversation we've had, and that is it's about relationship and trust.
43:53
SPEAKER_00: So I've talked a lot about what it feels like to be in my In this relationship.
44:03
SPEAKER_00: And I I'd love to hear a little bit of how you're trying to navigate that.
44:09
SPEAKER_00: And my version of that is what's easy for you in that and what's hard for you.
44:15
unknown: Yeah.
44:16
SPEAKER_01: Well, I think I'm naturally a relational being.
44:20
SPEAKER_01: I thrive on connection.
44:21
SPEAKER_01: So I think I'm pretty good at establishing connection across a variety of personalities, a variety of mindsets.
44:30
SPEAKER_01: People come in in all different head spaces.
44:34
SPEAKER_01: And I think I can read that pretty well and meet people where they are and help them move toward where they need to be, providing information in a way that they can receive it and helping them make the decisions that need to be made.
45:09
SPEAKER_01: I have to do that in a more compressed fashion.
45:12
SPEAKER_01: And even times I might meet someone and now we have to do something like now.
45:19
SPEAKER_01: And I've heard I've heard you say on your podcast, you can't surge trust in a crisis.
45:25
SPEAKER_01: And I think that really applies in a case where someone has a change in their condition and we have to make a quick decision.
45:32
SPEAKER_01: If I know them already, the trust is there.
45:34
SPEAKER_01: It usually goes much smoother.
45:36
SPEAKER_01: It's hard to have to convey bad news and a it's usually a difficult decision where no choice that you have is a good one.
45:46
SPEAKER_01: You're choosing the least bad out of choices.
45:49
SPEAKER_01: And um, and that's hard.
45:51
SPEAKER_01: And and when people don't want to do what you know is best for them, walking that line of respecting their autonomy, but also trying to get them to do what you believe and know is actually what they would want if they were perhaps not making a decision in a place of fear or shock, etc.
46:16
SPEAKER_01: So those are hard.
46:18
SPEAKER_00: I appreciate your perspective respecting my privacy on this, but I remember the day.
46:25
SPEAKER_00: I will never, for the rest of my life, forget the day that you needed to tell me that what I was doing was not helpful to either you or ultimately my care.
46:41
SPEAKER_00: And I it was it was so different from the kind of gentle guidance or rybald, witty Sue.
46:55
SPEAKER_00: Come on.
46:56
SPEAKER_00: This was this was Dr.
46:58
SPEAKER_00: Brown very directly conveying information that I needed to hear with no like gentle rap around it.
47:10
SPEAKER_01: So I I believe I used my mom voice.
47:13
SPEAKER_00: You did, but I think it was also what you just said.
47:16
SPEAKER_00: It was that idea that that yeah, part of this is letting me lead and helping meeting me where I am, but there are certain days where I'm not gonna get us there if I continue to behave the way I do.
47:28
SPEAKER_00: And I I guess you just know how to do that, huh?
47:32
SPEAKER_01: That it isn't something that you learn right away.
47:35
SPEAKER_01: I think it's it's a reflection of my gray hairs.
47:38
SPEAKER_01: That uh, we could literally talk forever.
47:44
SPEAKER_01: Uh we may have actually talked forever.
47:46
SPEAKER_01: Um, but uh I I will perhaps have you back for a future episode where we can dive into some more of these threads we've started to pull on.
47:54
SPEAKER_01: Um you're fascinating, wise, interesting, smart, caring human.
48:01
SPEAKER_01: I still don't quite understand how you walked into the White House and had to convey information uh to somebody who might not have received it or responded to you in a kind way, and yet you still have kept such a big heart.
48:16
SPEAKER_01: That is probably of all the million things I respect about you, how you did such a hard job and and didn't lose your your heart.
48:23
SPEAKER_00: Luckiest girl ever is evidenced by the fact that I landed in your clinic.
48:28
SPEAKER_01: So thank you, Dr.
48:30
SPEAKER_01: I feel very lucky and incredibly privileged to have been able to help take care of you.
48:34
SPEAKER_01: Um, so that's this episode of Just Cut It Out.
48:38
SPEAKER_01: Thank you so much for joining us.
48:39
SPEAKER_01: We've learned a lot from our guest, the Honorable Susan M.
48:42
SPEAKER_01: Gordon.
48:43
SPEAKER_01: A little bit about inflammatory breast cancer.
48:45
SPEAKER_01: And as a reminder, if your breast turns red, if it swells, if it hurts, make sure you get it checked out.
48:50
SPEAKER_01: And if someone's giving you antibiotics and not following up, make sure you go back, see someone.
48:56
SPEAKER_01: Um, if it keeps going, make sure you see a breast doctor of some kind.
49:00
SPEAKER_01: We learned a bit about the side effects of chemotherapy and immunotherapy.
49:06
SPEAKER_01: And as she said, that there's some side effects that are annoying or inconvenient, and then there's some that really strike a chord.
49:14
SPEAKER_01: Pay attention to those.
49:15
SPEAKER_01: Those are telling you something about who you are.
49:18
SPEAKER_01: They're they're threatening your identity and understanding that I think can help give a great perspective on how to respond and how to navigate that challenge.
49:29
SPEAKER_01: And as Sue said, in those quiet moments, you know, that's when you are visited by those thoughts, by the deeper meaning of what's going on and what this means.
49:41
SPEAKER_01: So I hope that you've taken away one or more amazing nuggets from my guest, and I look forward to seeing you on a future episode.
49:49
SPEAKER_01: Thank you so much.